Main » January 2005

January 30, 2005

Sunday tired Sunday

It is already Sunday and I am still not back in my home, I am really feeling down. It is so hard to stay in someone elses home and then to also find out that someone you truly respect and would never intentionally offend you have done so simply by trying so hard not to. I know that does not make sense to anyone but me right this minute. My hands are swollen and red again, my elbows are acting-what is that about? It seems like at least weekly something else rears its ugly head and I have no choice but to adapt and I am tired of adapting to everything! I wish for once something or someone had to adapt to me. It is so odd to me that every time I turn around something else is going wrong.

I have managed to also make my son angry at me most of the time anymore and at the same time, I do not understand how that happened. I chalk part of it up to normal teenage moodiness-but I think the rest is also staying at my parent house, changing schools, not having a home still, we have been at my dads for three weeks now and it looks like it will be another week or so. I am truly hoping for less simply because it is so very hard to have two families under the same roof and it work for any length of time.

I have my long day tommorow then have to pick up the kids, I will be lucky to make it home by nine in all fairness and then have to get them ready for bed and make sure I can go to sleep at a reasonable hour so that I can get up tuesday and do it all again.

I am tired, so tired. I have been telling people that I sleep like a baby-up every two hours-LOL but it is so true and I need a good nights sleep so bad. I honestly think if I could sleep for about 10 hours solid I could start feeling better. A lack of sleep will cause you to be in more pain (my own opinion) simply because your body is supposed to heal itself through rest so how does that happen if you do not rest?

Anyway I am going to wrap this up and get ready for bed-filled with dread over tommorow and such a long long long (did I say long yet?) day.

One more thing before I wrap it up-I want to apologize to anyone who has read this and feels offended by my blantant dislike of Mr. Bush. Ocassionially I interject my opinion on alot of matters everywhere LOL and this is also one of those places. In any event to anyone who felt truly offended-I am apologizing to you. And to anyone who enjoys it-NAMASTE :) and goodnight.

Remember-keep smiling :)

Posted by Lisa at 05:26 PM | Comments (0)

January 27, 2005

Todays joke

I have fallen behind-mostly because I am so tired all the time again. Anyway if you are offended by political jokes or one foul word-do not read the joke-I repeat-DO NOT READ THE JOKE-

Dubya, Cheney & Jumbo

George Bush and his accomplice Dick Cheney were riding on an elephant. A group of bystanders were watching intently. All of a sudden someone in the croud shouted, "Hey look that elephant has two assholes on it!"
Bush and Cheney looked down at the elephants ass, confused.

Posted by Lisa at 06:22 AM | Comments (0)

January 25, 2005

Working full time and parenting full time

I was late for work this morning because I had to enroll the kids in their new school. We really thought we would be living in our new home by now so last week was the kids last day at school and they started Wood County today except after we get there and fill out all the paperwork, they tell us to come back tommorow as the semester ends today and there is nothing for them to do. Now until we mve I have to be ready even earlier which is really hard when you have trouble moving s it is. I have to take the kisd to school clear out near Lubeck then come into work and it is going to be rough. Seems to me the guy moving our home doe not get into a hurry about anything ! I am begging my husband for us to put the trailer up for sale do our income taxes and go back to florida. I am tired of the cold, I am tired of feeling like a burden to my step mother and the kids want to go back also-I think they are tired of having t owear a jacket so much :) They both ask all the time when we can go back to Florida so I know they miss it terribly and so do I. My mother in law is in Naples and that is too expensive for us but Sarasota i close by and more affordable. My mother in law is also trying to convince my husband that we need to go back to florida, then my husband could find a job making decent money instead of what he is making now and I too could find a better paying job, I was making 500 a week there and only 260 a week here, talk about a blow to the ego!! It is a bitter pill to swallow that her in another part of the country I am not worth what I was before. :( What can you do-except keep asking to go home!!

More later, have to get back to work :)

Posted by Lisa at 09:08 AM | Comments (0)

January 24, 2005

New Pain Meds

My doctor decided to change my pain meds to a med that is like lortab but changes the compound around a little when you start to build a tolerance and require more than the prescribed amount. I do not like the new pain med at all, I do not think it is working, but when you wake up and it is 0 degrees out how do you know for sure? I need the weather to turn warmer so I can tell if any of this medicine is working or not. I can not tell when it is so cold that I ache and am stiff all over.

Last night my husband was joking around and stepped on my foot, today that toe is swollen and black and blue. He does not realize how much I hurt and how easy it is to hurt me right now. He calls me a wimp like it is a joke or something but it is not funny. I had to have him put the lid on my cup that I bring my ice tea to work in because I could not get the lid closed at all, it hurt too bad and saturday it hurt to light a ciggarette. I am going to be in BIG trouble if I can not light a ciggarette. What am I supposed to do?

Jeremy-the guy who is supposed to move my mobile home now says he can do it wednesday that will still make it next week before I get out of my dads house. Don't get me wrong-I am grateful that we can go there and all but I need my own space, and I am certain they are more than ready to have their house back, this past friday it was two weeks that we have been there. You know the old saying-fish and company are alike in that they both stink after three days! I hope we can get moved in and get the kids in school and just get our life back to normal soon, this is so hard right now.

One thing that can trigger a flare or cause a flare to get worse or last longer is stress and I seem to have that in spades right now.

Oh well I guess eventually things wil work out the way they are supposed to.

Until then-keep smiling :)

Posted by Lisa at 09:08 AM | Comments (0)

January 23, 2005

Ready for the work week?

Used to be I would just jump out of bed, Iwas always so eady to start my day and now it takes forever to get out of bed-I move like an old woman and I feel like one most days also. The new pain meds aer not working out so well. I wish I could call her and tell her try the 40 oxys again because I think I could handle it now. The cold weather is really making me miserable.

My hands are so sore and swollen they hurt even typing hurts but it seems like there is nothing anyone can do about it for me. It also seems like at times that no one really cares how much I hurt. Other times I think they do and I do not know if it is me or if they really do care and do not know how to show it very well or if they simply dop not know what to do to help me feel better. It is confusing sometimes.

I hope like hell I am in my own home again soon. This being houseguest is driving me crazy!! I want to go home I want to sleep with my dog, I want to have my own stuff around me and I want to be able to just be in my own home. It has been over two weeks and it seems so much longer now, it is driving me crazy.

I was reading a financial planning book (it was one for dummies, which I qualify as when it comes to managing money) and anyway it said to pay yourself first-and to put 10% of your pay in a savings account when you get paid before you cash your check, before you do anything else regarding your finances-put 10% away-hence the term "pay yourself first". I have direct deposit through my work so it was easy to fill our the form and begin to "pay myself first". After you get an amount that your comfortable with take it and buy a few stocks. Do not hire a stockbroker, if they knew so much they would be so wealthy they would not need to work themselves so why pay someone to do what you can research and do yourself. It makes sense to me. I just wonder if once I go on disability if I can still do that because it will be hard to survive on just disability anyway so I imagine it will be even harder to try and save anything. Also we are cutting out most of our cable channels because realistically we do not watch but a few and we need to start saving money wheerever we can. I have also started clipping coupons for the past two weeks and the grocery store wher I go doubles them up to .50 so it is almost a dollar off stuff. I was reading an article about a woman who clips soupons avidly and almost always gets around 150.00 worth of groceries for under 30.00! That to me is incredible. One thing I do not scrimp on is food for the household as the children need to eat balanced meals that are good as well as good for them. But I will use the coupons and I will try vry hard to save money there. We also cut back to generic ciggarettes, something I swore I would never do but when times get tight you do what you have to do. Now if I culd just quit that would be even better!!

Anyway, I will update more tommorow or tuesday. Monday is my 12 hour day so I may or may not update then, depends on how I feel.

Keep smiling :)

Posted by Lisa at 03:25 PM | Comments (0)

January 21, 2005

Back From the Dr

My visit with the doctor went well. My doctor said I make her a better doctor because my case is so frustrating-LOL. She is trying me on a new pain med called Panlor SS. She said it is like lortab but the chemistry is altered so it is like starting lortab for the first time. We shall see.

Did you all see where the religioius right is now saying "Sponge-Bob Squaer Pants" has homosexual overtones> You have to feel sorry for these people since they are obviously so repressed they do not know what to dol Anway after reading that I decided we did not need a new joke today thanks tothe religious right in this country we were provided one-LOL.

Naptime for me I am really getting tired.

Keep smilin :)

Posted by Lisa at 12:24 PM | Comments (0)

12 Degrees and Major Objection

We have two to three inches of snow on the ground-not enough to not have to go to work but enough to make the roads dangerous. My dad drove me to work today so I would not have to attempt it. I told him though I have a doctor appointment but he still insisted on bringing me which I greatly appreciate as I do not like driving on snowy or icy roads, I really do not even like driving in th rain. One of the things I have had to get used to is that I am now even more nervous of a person than I was before.

I am in so much pain again. My mother in law said it is possible to build up a tolerance to the lortab so she advised me to get my doctor to switch me to something else like percocette or percodan or she also said they can give you presription demerol or dilidan like what they gave me in the hospital and that helped alot-so I will talk to her today and see what she reccomends-I know that I have to ge able to get a break from the pain. The other day a new area was causing me so much pain I thought I was going to die-it was my jawbone! I never expected it to hurt-I did not eat anything for two days! It was so bad I could not stop crying. Anyway, all the pain killers in the world did not help it.

We are still staying at my fathers due to the weather they can not move my mobile home yet. Don't get me wrong-I am grateful but I want to go home so bad and it seems like I never will be home again!!

Anyhow I will probaly update after my doctors appointment see how my blood came out and see what she decides to do for me as far as adjusting my pain meds goes.

Keep smiling :)

Posted by Lisa at 05:05 AM | Comments (0)

January 18, 2005

Tell me again WHY WE GET MARRIED?

Last night I gave my husband a presription to get filled for me-he said he would take care of it as I worked until 8 lsat night. I got off no medication-pharmacy was closed all because he "lost track of time" something that happens quite frequently to him. As a matter of fact I do not think he has ever "found track of time". So anyway he promises me that he will get it this am for me as I can not hardly move due to it being 4 degrees outside. I am hurting so bad and yes it is a painkiller that I am waiting for him to get. Anyway this morning he told me he would bring me to work, go get my medicine bring it bak to me, so now an hour later I still do not have it, I called him and he said he fell asleep! Must be nice-I am hurting so bad that I can not sleep real well and yet he is so concerned that he is sleeping instead of keeping his word!! He is so irresponsible I could scream. He knew I was going to be miserable this morning because I am out of pain meds, it is so cold, I am not sleeping, I was running a temp, and I worked 12 hours yesterday and went to bed pretty soon after getting off. Anyway so I ask him if he can go and get my medicine so maybe by 10 or 10:30 I can get some relief. He acted so put out!! This was his screw up anyway. He lost track of time lst night so he did not make it to the pharmacy before it closed and now it is somehow my fault that he has to make this trip. If he paid attention and did things the right way it would not cause him the extra grief. If he would stop screaming and cussing at everyone around him when things do not go his way he would be better off, HE DOES NOT CARE who hears him go into his tirades. When his mom visited I left the table in tears because of his screaming and cussing. It does not matter whos around and he says some of the ugliest things-I WISH YOU WOULD DRAW YOUR LAST BREATH NOW and that type of stuff-things I have never said to anyone in my life and never would! He is just that ugly when he gets angry it is ridiculous and I resent it so much. Ninety percent of the time I firmly believe I want a divorce. I do not think I can stay married to him and deal with a chronic illness at the same time
it would be nice if he were supportive and helpful instead he calls me lazy now and says I am just not getting out of bed because I do not want to when I used to get out of bed at lesat an hour before anyone in the house because I was an early bird and I enjoyed the peace and quiet and he knows that he just says some of the most hurtful things imaginable when he is mad and then apologizes like that makes it ok-it is not ok. I know in my heart I want a divorce I just do not want to hurt him. I do love him very much I just can not take his mouth anymore. He says too many ugly things to me and the kids none of us can ever forget them.

Posted by Lisa at 05:55 AM | Comments (2)

January 17, 2005

TRUE SO TRUE

This was posted in a message board that I belong to and it is so true that I felt compelled to put it as todays joke that is true!!

Mum and Dad were watching TV when Mum said, "I'm tired, and it's getting late. I think I'll go to bed." She went to the kitchen to

make sandwiches for the next day's lunches. Rinsed out the popcorn bowls, took meat out of the freezer for supper the following evening,

checked the cereal box levels,filled the sugar container, put spoons and bowls on the table and started the coffee pot for brewing the next morning.

She then put some wet clothes in the dryer, put a load of clothes into the washer, ironed a shirt and secured a loose button.

She picked up the game pieces left on the table, put the phone back on the charger and put the telephone book into the drawer. She watered the

plants, emptied a wastebasket and hung up a towel to dry. She yawned and stretched and headed for the bedroom.

Stopped by the desk and wrote a note to the teacher, counted out some cash for the field trip, and pulled a text book out from hiding under

the chair. She signed a birthday card for a friend, addressed and stamped the envelope and wrote a quick note for the grocery store. She put both

near her purse. Mum then washed her face with 3 in 1 cleanser, put on her Night Solution & age fighting moisturizer, brushed and flossed her Teeth

and filed her nails. Dad called out, "I thought you were going to bed." "I'm on my way," she said. She put some water into the dog's dish and

put the cat outside, then made sure the doors were locked and the patio light was on. She looked in on each of the kids and turned out their bedside lamps

and TV's, hung up a shirt, threw some dirty socks into the hamper, and had a brief conversation with the one up still doing homework.

In her own room, she set the alarm; laid out clothing for the next day, straightened up the shoe rack. She added three things to her 6 most important things to do list. She said her prayers, and visualized the accomplishment of her goals. About that time, Dad turned off the TV and announced to no one in particular. "I'm going to bed."

And he did...without another thought. Anything extraordinary here? Wonder why women live longer...? 'CAUSE WE ARE MADE FOR THE LONG HAUL.... (and we can't die sooner; we still have things to do!!!!)

Posted by Lisa at 04:48 PM | Comments (0)

Is it Lupus or is it Not?

The following is kinda like a guideline-remember many auto-immune disorders resemble each other so it is very hard to get a diagnosis.
As you read these think carefully about each one-something you may have seen as a normal sign of old age or the like really may not be. You can not be too careful when it comes to your health.

So, you think you may have lupus? What should you do now?

Swollen, or painful joints
Do you get a rash when you go in the sun?
Do you get mouth ulcers?
Do your fingers/toes go blue, white or red in the cold?
Have you ever had a low red blood cell count (anaemia), low white cell count, or low platelet count?
Do you get extreme fatigue, even when you've had a good night's sleep?
Have you ever had pleurisy (pain in the chest on breathing in)?
Do you get a red rash on your face, across your cheeks and nose, in the shape of a butterfly?

If you've answered yes to three or more of the above questions, then there is a chance that you may have lupus.

Look at your symptoms, to get a diagnosis of lupus, patients usually must have at least four of the following-

1. Characteristic rash across the cheek
2. Discoid lesion rash
3. Photosensitivity
4. Oral ulcers
5. Arthritis
6. Inflammation of membranes in the lungs, the heart, or the abdomen
7. Evidence of kidney disease
8. Evidence of severe neurologic disease
9. Blood disorders, including low red and white blood cell and platelet counts
10. Immunologic abnormalities
11. Positive antinuclear antibody (ANA)

Get yourself a good doctor who knows a lot about lupus. Contact your national lupus charity (e.g. Lupus Foundation of America, Lupus UK) who should be able to recommend a good lupus doctor.

If you already have a doctor who isn't very good or isn't taking your symptoms seriously, ask to be referred for a second opnion.

Keep on going and believe in yourself. Many lupus patients often say they feel like hypochondriacs when visiting their doctor because of all the minor symptoms that they want to report. It can be a long, hard road to get a diagnosis & it's easy to want to give up. Sometimes, even their families begin to question whether there is anything really wrong. The important thing to remember is that you know that there is something wrong, so you must keep going until you get an answer.

Make a note of all your symptoms, even the ones that you think are not connected. Take this list with you when you see your doctor. Also make a list of any questions you have.

Learn about lupus, read books, search the internet & be informed about the symptoms, treatments & tests. This will help you to communicate with & better understand your doctor & what is happening.

Autoimmune diseases tend to run in families, although they can change in their expression from generation to generation. Your grandmother may have had lupus, your mother Graves' disease, or your sister diabetes. Look back at your family history, and tell your doctor if anyone had an autoimmune disease, it may help with the diagnosis.

Posted by Lisa at 02:48 PM | Comments (0)

Why not ask someone with chronic pain??!!

MANAGING PAIN WITH NARCOTICS - OXYCONTIN AND ITS ALTERNATIVES
By Howard LeWine, M.D. Brigham and Women's Hospital

Narcotics are an essential part of pain management for many people. Doctors and their patients need to balance the improved quality of life pain relief brings against the potential for abuse and misuse. Narcotic abuse refers to a pattern of behavior where someone uses a drug to get "high," and as a result runs into problems at home, school or work. Someone abusing narcotics is prone to hazardous behavior, such as driving while intoxicated, getting into fights or running into trouble with the law. Narcotic misuse includes giving narcotics to others for whom they are not prescribed, selling prescription drugs, and stealing them.

Drug dependence is different. Dependence refers to the physical and psychological changes that occur when someone regularly takes a narcotic. A person may need larger amounts of a drug to achieve the same effect. The person could develop withdrawal symptoms if the drug is suddenly stopped.

There are situations in which the potential for drug dependence should be taken out of the equation. The most glaring example is end-of-life care. Increasing the dose of narcotics to relieve pain in a terminal patient might be limited by side effects and the risk of halting breathing, but worrying about the patient's becoming dependent on the drug should never be an issue.

Doctors sometimes will need to prescribe narcotics for a prolonged painful illness, postoperative pain, or a chronic pain syndrome. The patient may become dependent on the drug, but dependence is not always a bad thing as long as the gains are worth it. Doctors do pay attention to the possibility that healthy dependence could become unhealthy abuse.

Of the many narcotic pain relievers, OxyContin has been getting the most publicity. OxyContin, when prescribed and used appropriately, can be an important part of a successful pain-management program. When the pill is swallowed whole as designed, the active ingredient oxycodone is slowly released to relieve pain without creating a "high." This allows people to function in daily life.

But OxyContin can easily be misused. It has more abuse potential than many other narcotics because it is pure oxycodone, the tablets can contain very high doses of narcotic, and the tablets can be crushed to release the ingredients in a powder form that provides a much more immediately potent dose. So if you are taking this medication, never chew the tablets, and store them in a special, safe place.

OxyContin should usually be limited to the treatment of pain that is expected to last more than a few weeks. For most people with new severe pain, shorter-acting narcotics can be used. There are many choices, most of which contain a combination of two ingredients. Acetaminophen, aspirin, or ibuprofen is often combined with a narcotic such as codeine, hydrocodone, or small doses of oxycodone. Examples are acetaminophen with codeine, Vicodin, Vicoprofen, Percocet, and Percodan. People with gastritis and peptic-ulcer disease should note that Vicoprofen contains ibuprofen and Percodan contains aspirin. These medications also are used in people with chronic pain to help manage what is called breakthrough pain.

In people with cancer or chronic pain syndromes, using a long acting, slow-release narcotic preparation can prevent, or at least significantly decrease, the frequency and severity of breakthrough pain. The long-acting alternatives to OxyContin are oral sustained-release morphine sulfate (MS Contin, Avinza), methadone, and the fentanyl (Duragesic) skin patch. The morphine-sulfate preparations share similar problems with OxyContin in that they can be opened or chewed, but the incidence of abuse with MS Contin and Avinza has been much lower. Methadone works well for many people to provide steady pain relief with less of the "high." The fentanyl skin patch is expensive, but provides a steady amount of drug delivered to the bloodstream and, presumably, a steady amount of pain relief.

Because all of the narcotics work in essentially the same way, they all share the same side effects and potential for dependence. When used under careful medical supervision, these drugs can provide great relief and improve the quality of life in people with cancer or chronic pain conditions.

The company that makes OxyContin is working on a new tablet design. The goal is to create an easy-to-take oral medicine that continues to slowly release oxycodone over eight to 12 hours, but one that cannot be altered by chewing or crushing to release pure, short-acting oxycodone.

Howard LeWine, M.D., is chief editor of Internet publishing, Harvard Health Publications. He is a clinical instructor of medicine at Harvard Medical School and Brigham and Women's Hospital. Dr. LeWine has been a primary care internist and teacher of internal medicine since 1978.

I know some people abuse narcotics but it is wrong to hold all accuntable for the actions of a few! Some of us are trying so hard to get some relief even if it is short term relief we will do it because it wears you our to hurt so badly. Am I an addict, no, have I become dependent for a better quality of life, yes, is there a BIG difference-YES

Posted by Lisa at 10:47 AM | Comments (1)

Moved away from my co-workers

I got moved to an office by myself today. This is so I can use a lamp instead of the fluroescent lights that do not bother anyone else but give me awful headaches and make me so very nauseas I think I am dying. It is only 15 degrees here right now anyway so every fiber of me hurts like HELL. I put in a call to my doctor to ask for something stronger for pain relief, I do not know if I have built up a tolernace to the lortab or what but it is not effective for me anymore. I do not know what she is going to want to do but what I am doing is not working for me. In case you want to know-what I am doing is crying-hoping the pain will come out my eyeballs-LOL, it hasn't worked so far though-better luck next time.

Anyway-my coworkers act like they are jealous because I am in an office by myself. Do they have any idea how lonely it is? I would not trade back now though for nothing-the difference in the way I feel in the lights and ut of the lights is like night and day. And it is so quiet in my new office that I love it. The longer this flare goes on the less my tolerance for any kind of noise is. So it is for the best that I am alone right now.

Still wish I knew what to do about disability. Part of me is afraid to give up working and the other part of me is afraid to continue. Pretty messed up but that is not too unusual for me.

I find it ironic-when I was a child all I ever wanted to be when I grew up as writer-I did not want to be a wife, mother, or owe anything to anyone but myself. I wanted to go to countries ravaged by the injustices of war and write and rage against the corruption of a goverment that would let the senseless slaughter of innocents continue, anyway fate and hormones intervened and I got pregnant, got married and gave up the dream of writing.

Now almost 17 years later, I am writing-it is for free and it is on health-but I am writing so maybe someday my dreams will come true?!

BBL-(Be back later) probaly tonite.

Posted by Lisa at 10:16 AM | Comments (0)

January 15, 2005

Coping? Is it possible?

These are tips provided by a lupus website to help people "cope" with lupus. Some are practical and you may or may not be able to do-others (and you will reconzize them) if you can do them-please please please tell me how!!

Steps to coping with lupus
- become well-educated about lupus

- try to prepare for the up-and-down nature of the disease. plan alternate activities, alternate schedules or time for extra rest.

- be open with family & friends about the unpredictable pattern of lupus & how the disease affects you.

- By listening to your pain as a signal you can begin to control it.

- find positive ways to channel such negative feelings as anger & depression.

- try to accept the things you cannot change rather than feeling constantly frustrated & upset over situations beyond your control.

- remember that stress, depression & pain are all closely connected & each affects the other. If you can, take steps to solve any one of these problems so as to reduce the extent of others.

- you can reduce fatigue by developing priorities & learning to pace your daily activities. Break down big, long-term goals into small, manageable steps that can be accomplished in some short amounts of time.

- if lupus has limited your hobbies & activities find new ways to use your skills.

- don't be afraid to ask for help if you need it. Family & friends, doctors & other health care professionals, & Lupus UK/Lupus Foundation of America are all sources of help & support.

- become a partner in your healthcare by taking care to stay as healthy as possible - physically & emotionally.

Prioritise
The most important things are done first

Evaluate your daily routine & responsibilities in light of your current energy level.

Make a written or mental list of things to do each day.

Ask yourself these questions about your list:

- which ones are important to me?

- which ones have to be done?

- how much energy & time is required to accomplish them?

Determine to spend some time on the most important one or two items each day.

Eliminate unnecessary tasks & activities - which items on your list don't really need to be done?

Delegate - which items on your list can be done by someone else?

Encourage others top be self-sufficient.

Modify or simplify the remaining tasks or activities.

Learn to say "No"!

Planning
Think ahead so that you can do what you want to in the easiest way & in the shortest time possible.

Use mental energy whenever possible to conserve physical energy.

Plan work, & work according to your plan.

Plan time for rest, relaxation, & recreation.

Arrange your work & storage areas.

Plan in advance for work to be done in each period (day, week, month, season).

Plan alternating activities: sit/stand, fast/slow, light/heavy.

Buy smart. When making purchases, consider ease of use, weight, size/shape of items, handles, & any other important considerations.

Pace yourself
Know how to balance activity & rest to make the best use of your energy.

Plan several; rest periods during the day.

A ratio of 10 minutes rest to 50 minutes activity seems to work well.

Rest before you get tired.

Avoid getting involved in activities that tax you beyond your endurance.

Divide large jobs into small steps.

Work at a rate comfortable to you.

Avoid tye need to rush with better planning.

We must pace ourselves properly in order to have energy to carry out our priorities & plans.

Posted by Lisa at 02:45 PM | Comments (0)

Impeachment Anyone?

I personally think this is a GREAT idea!!!!!!

Top ten reasons George W. Bush should be impeached

1) Compassionativity is not a word.
2) Social Security IS a federal program.
3) Benjamin Franklin did NOT invent the light bulb.
4) Trout are not extinct.
5) Brazil DOES have blacks.
6) Speaking is an important part of being president.
7) Our children is learning enough.
8) Fool me once, shame on you... fool me twice, shame on me.
9)Two words... Big Oil.
10) Sanity is an inalieble right.

Posted by Lisa at 12:42 PM | Comments (0)

Xrays and Blood work for breakfast-YUMMY!

I have never spent so much time with a needle in my life as I have since my dx!! It seems like every time I turn around they want more blood. I wonder if they take all of it and give me brand new blood if I could be cured? LOL-just joking. Anyway, my mobile home should be moved tuesday so if all goes according to plan with the utilities and such hopefully I can be home friday!! I need to be home so badly. I have no other desire to be anywhere else at the moment. Yesterday we had to go winterize the lines and when I walked in my home I started bawling like a baby. Me who according to all my friends-likes to live in a sterile enviroment-had to see mud tracked through my house, all my possesions laying down, it was just alot emotionally to deal with. It seems like these things keep happening. My husband said maybe moving to parkersburg will change our luck since belpre has not been so good to us. We did find a lot in a very nice park and I hope it is going to work out well for us.

The cold weather has came and of course with it the swollen painful joints that make one wish they could cut off the offending parts of course in my case that would be too many parts LOL.

My daughter is going to stay with a friend tonite and I think my son might also-at least they will get a break then. I thin I will make my husband take me to visit Steve and Kelly tonite since I need to get out also for awhile. IT would rally help my attitude quite a bit to just get away for awhile. Sometimes a change of scenery is a great thing!

Posted by Lisa at 12:32 PM | Comments (0)

January 14, 2005

Blonde Joke Time

Lunch time

There was a blonde, a brunette, and a red head. They were all builders and they were working on a sky-scraper. They always ate lunch on the top of the building. The brunette always had a ham sandwich for her lunch, The red head always had a cheese sandwich, and the blonde always had a turkey sandwich. One day they all got sick of always having the same thing to eat everyday, so they made a deal. They all said that if they brought the same sandwich they usually bring, they would have to jump off of the top of the building.
The next day, the blonde was found dead on the ground by the building. The husbands of the three builders were there and they started to talk. The red head's husband said to the other two men, "I packed my wife a peanut butter and jelly j so she wouldn't jump off."

The husband of the brunette said to the other two men, "I packed my wife a turkey sandwich so she wouldnt jump off."

They both looked at the wife of the blonde and he said- "don't look at me, she packs her own lunch!"

Posted by Lisa at 05:37 PM | Comments (0)

January 13, 2005

Lupus and Dental Care-something we probaly do not think about

Dental Concerns and Lupus
by Gretchen Malik, Women’s Health at Suite101.com
Communication, self-examination and prevention are the keys to controlling dental problems for the lupus patient. Lupus patients have specific dental problems because of the disease process and the medications needed to control lupus symptoms.

Lupus patients should visit the dentist at regular intervals, usually every two to six months, and inform him about current and past medical history. Your dentist should also be supplied with a complete list of medications, the dosage and any side effects. Also keep your physician aware of any dental problems and any proposed treatment.

Get into the habit of regular self-examination of your mouth. Periodontal disease, a group of inflammatory conditions that affect the gums (gingiva) and supporting bone around each tooth, causes the greatest amount of tooth loss in adults and affects almost everyone. The most common periodontal disorders are gingivitis (inflammation of the gingiva or gums) and periodontitis (inflammation affecting the bone under the gingiva) does not cause pain and may not give warning until significant tissue breakdown has occurred. However, the presence of any of the following signs and symptoms signs and symptoms of periodontal disease can be detected with self-examination:

1. Bleeding gums: Gingiva bleeds on eating or brushing teeth, or bleeds without any obvious cause.

2. Swollen gums: Enlarged gingiva is not bound tightly around each tooth.

3. Red Gums: Gingiva is red in color. Dark colored gingiva due to naturally occurring melanin (the substance which colors the gums) is not an indication of inflammation.

4. Sensitive gums: Gingiva that is painful to brushing. Untreated gingivitis can progress into the tissues under the gingiva and cause the bone that supports the teeth to become weakened and resorb.

Periodontitis, a form of dental disease, is marked by bone loss and will eventually lead to loosening or loss of teeth. It is usually painless and may have the same signs and symptoms as gingivitis. If any signs or symptoms of gingivitis or periodontitis are noted, you should tell his/her dentist. Your dentist can accurately diagnose and treat periodontat disease.

Prevention is the best treatment for dental disease. The only way to prevent periodontal disease is by effective tooth brushing techniques. Tooth brushing must clean all five surfaces of each tooth. The most critical area of the tooth to clean is immediately adjacent or next to the gingiva or gums. Since a toothbrush cannot clean the area between the teeth, dental floss, dental tape, rubber tips, special brushes and stimulators are used to remove the plaque that is deposited between teeth. It should take approximately three minutes to brush your teeth thoroughly. Plaque that causes dental cavities and periodontal disease accumulates on all tooth surfaces and must be removed daily. Any areas of gingival sensitivity, tooth sensitivity, or gingival bleeding require effective brushing or the sensitivity and bleeding will get worse. If it hurts or if it bleeds, it should be brushed harder.

Everyone with lupus should check the inside of their mouths regularly for any red or irritated areas. If such areas are noticed, these should be brought to the attention of the physician and dentist. Approximately 25% of lupus patients have these kinds of oral problems, which are usually accompanied by a skin irritation or facial rash. Oral problems in lupus are also found on the lips and on the tissue inside the cheeks. If you have an active oral problems do not use denture powder or denture paste to hold in removable dentures. If toothpaste irritates the mouth, baking soda and water should be substituted for it.

You can learn to keep dental problems under control with preventive maintenance.

Posted by Lisa at 06:23 PM | Comments (1)

Time for me to Whine

This last week has been one of the worst weeks since the diagnosis. In the past week we got flooded and had to evacuate, my car broke down, we are staying at my parents and it will be a week tommorow, and now i find out it will be another week at least, the guy who is setting out traielr said it can not be moved until tuesday because the ground should be frozen by then. This means one more week at my dads with the kids, dog and everyone else in such dissaray that it is not even funny. I do not get two minutes to myself ever and the kids aer fighting up a storm because they are bored to tears, my husband thinks he is on vacation which is not a surprise since he thinks that at home also and I can not take it! I am ready to jump off a bridge but knowing my luck as of late I would wind up paralyzed from the neck down and still alive. Then my mother wound up in the hospital tonite, it is literally just one thing on top of the other., I have to use my dads computer so I have not been able to listen to even a dharma discourse this whole time which has been my saving grace up until this point in my life. I AM GOING TO SCREAM! I want a beer-mind you I am not a heavy drinker at all but it has been so long since I have even had a beer that I know one would help me relax some as well as help me sleep. The dog has not had hardly any attention for this whole ime because he is in the basement and I can not take the steps to go down there and my job is miserable and I am just ready to die. Not that I am suicidal I am just losing my mind at this point!!

ANyway-I kept my word and posted my joke for the dy so I am going to close for tonite-and remember in the immortal words of my father-keep smiling :) whatelse are you going to do really?

Good night, and gentle hugs.

Posted by Lisa at 06:11 PM | Comments (0)

More redneck humour

Sobriety Test

A young man was pulled over by the Mississippi State Police for speeding. The officer stepped out of his patrol car, adjusted his sunglasses, and swaggered up to the young man's window. "What chew driving so fast for boy? You going to a fahhr? Let me see your license, boy." The young man handed over his license.
Then the officer noticed that the back seat of the car was full of large knives. The officer said, "Tell me boy, why you got them knives on that there back seat?"
The young man replied, "Well sir, I'm a juggler."

The officer spat some tobacco juice and then he said, "A juggler; well you don't say. Boy, put cha hands on the trunk of yer car; you going to jail!"

The young man pleaded with the officer not to take him to jail. He offered to prove to the officer that he was a juggler by way of demonstration. He said, "You can even hold me at gunpoint while I juggle for you." The officer reluctantly allowed him to prove his point while he held him at gunpoint.

Two miles down the road at Joe's Tavern, Billy Bub was drinking it up with Jerry Lee Jones. Billy Bub soon left and got into his old, rusty pickup truck. He proceeded down the road trying his best to stay on the right side. All of a sudden Billy Bub spotted the most unbelievable sight of his life! He drove to the nearest phone booth and dialed the number for Joe's Tavern and asked for his buddy, Jerry Lee.

When Jerry Lee got on the phone, Billy Bub said, "Whatever you do when you leave that tavern, don't go north on route 109. The state police are giving a sobriety test that nobody can pass!"

Posted by Lisa at 06:05 PM | Comments (0)

Most Important Symptoms of MCTD

Most important symptoms
Raynaud’s phenomenon
Is basically always present in the early phase of the disease, mostly without other symptoms at the level of the fingers, unless scleroderma is also present at the onset of the disease.
Swollen fingers
Mostly all the fingers are swollen in the overall length and become ‘sausage-like’. Sometimes this is only temporary, but occasionally it evolves into sclerodactyly (thin fingers with hard skin and limited mobility).
Arthritis
In the early phase there is painful swelling of the joints of the hands and feet like in rheumatoid arthritis. Damage to the cartilage or bone, however, is rare. As such, malformations do not occur or only seldom and the function of the joints remains intact. This kind of arthritis is comparable to the arthritis seen in lupus.
Muscle inflammation
In 10 to 20% of the cases, patients develop a real form of myositis, muscle inflammation (see polymyositis). Two out of three patients suffer from significant muscle pain (no weakening or paralysis), without demonstrable abnormalities in the laboratory test, electromyography or biopsy. Patients complain mostly of pain at the level of the large muscle groups of the shoulder girdle and the upper arms.
Lungs
The lungs may show the same abnormalities and problems as in scleroderma. Reduced lung volume is common, sometimes reduced absorption of oxygen and rarely overpressure in the lung vessels with fatal outcome occurs.
Oesophagus
The same complaints as in scleroderma may occur.
Heart
Inflammation of the heart sac or pericardium (pericarditis) may be acute. Unlike in polymyositis, inflammation of the heart muscle (myocarditis), which may cause heart failure or arrhythmia, occurs rarely. These complications are very serious and may be life threatening.
Neurological damage
Meningitis, psychological abnormalities due to brain damage, damage to the spinal marrow or facial nerves have been described. These symptoms occur often in Sjogren’s Syndrome, which often occurs in MCTD.
Renal involvement
Renal involvement is very rare and can be similar to the damage caused in scleroderma (especially damage to the renal blood vessels) as well as to the damage caused in lupus lupus (damage to the renal filtering units).
Skin and mucous membranes
The skin may show symptoms of scleroderma as well as of lupus. The mucous membranes (mouth, vagina) and the eyes may be dry due to the Sjogren’s Syndrome .

Posted by Lisa at 09:06 AM | Comments (1)

January 12, 2005

Crow for dinner anyone?

The coworker I was complaining about earlier has been one of my best friends for over 30 years and I know in my heart she is trying to make life easier for me, I tried to delete that entry because I hope she never sees it, it would hurt her feelings so badly to know what I was thinking and I would never want to do that. Sometimes the pain gets so bad it muddles your thinking and you get almost to a point where you think everyone is against you. Realistically I am probaly going to wind up on disability and why should she not try to get a better position for herself if I am not going to be there? I just do not know what is going on in my head anymore. I am angry, in pain, easily drawn to tears and in general just feel really messed up. I am crankier with my kids than I ever was before and it does not help not having a home! I want to be at my house, I want to sleep in my bed, I want to be able to get away if need be and to be honest I just need some space. I am the type of person who requires alone time at least a little bit every day and I have not had that for quite some time now and that is driving me nuts and I can not concentrate at work at all anymore, there are just so many things going on all at once. Trying to get things moving so I can go home, and trying to get the kids switched at school, trying to get some understanding from my husband, trying to keep the kids quiet so they do not get on their grandparents nerves, money to move, then my car died today, actually it did not die just the water pump needed repplaced so now I do not even have a car-it should be ready tommorow though-damn considering I just went through a flood-the old saying when it rains it pours rings so true right now-LOL. At least I still have some sense of humour somewhere-it is just so hard to find right now. I feel more stressed than any one person should ever feel. Like right now while I am trying to relax and write in here and just calm down-my son will not quit bitching about everything! None of the things are in my control and he is 15 but sounds 2! I keep telling myself that his world is being disrupted also but right this minute it does not help. It is like he does not care that I said I was going to try and relax for a little while and he said oh and started in on me right then. And has not let up one little bit.

Anyway I am going to wrap this up because that is apparently the only way I am going to get a break from his mouth is to leave the room plus I have to bring the dog in or he will bitch and whine more if I ask him to because for some reason he thinks his whole life should just be playing. I am so tired of my family expecting me to do everything for them all the time and when they are asked to pitch in they throw a fit!! I NEED A BREAK SOMEWHERE!!!!!!!!!!!!!

Posted by Lisa at 05:15 PM | Comments (0)

Redneck Humor

Top 10 Reasons to Know You're a Redneck
1. Your dog rides in your truck more than your wife.
2. You wear specific hats to farm sales, livestock auctions, customer appreciation suppers, and vacations.
3. You have ever had to wash off in the backyard with a garden hose before your wife would let you in the house.
4. You've never thrown away a 5-gallon bucket.
5. You can remember the fertilizer rate, seed population, herbicide rate and yields on a farm you rented 10 years ago, but cannot recall your wife's birthday.
6. You have used a velvet leaf plant as toilet paper.
7. You have driven off the road while examining your neighbors crops.
8. You have borrowed gravel from the county road to fill potholes in your driveway.
9. You have buried a dog and cried like a baby.
10. You've used the same knife to make bull calves steers and peel apples.

Posted by Lisa at 06:40 AM | Comments (0)

January 11, 2005

I could get more support from support hose!

I told my husband tonite that I think after we get moved and settled in and if I am still not getting any better-I think I am going to apply for disability. He was so rude it was unreal! Told me that I have never wanted to work-mind you I have always worked-my entire life-and told me he doesn't want to be trash his whole life! Nothing is stopping him from looking for a better paying job-my health is a real issue and I am tired of trying to do it all! I work full time take care of the kids, take care of the animals, take care of the house, I am not and have never been LAZY and he implied that tonite which really hurt my feelings. He will not read about lupus, he shows no interest in learning anything about it at all! I am so angry!! I hope his attitude changes because right now he is making me so angry and is making me feel so unloved!

Posted by Lisa at 05:26 PM | Comments (0)

Terrible Tuesday

Today is a BAD day. A lot of trouble with cognitive functin-can not remember numbers, names or anything. Also alot of swollen joints today that are very painful. But the worst is the cognitive function. I fear losing my mind on days like this and I know it is incredibly rare in this day and age it still scares me and no one can guarantee me it won't happen. I hate feeling spacey and I hate the feeling of knowing I know something but can not find it even more.

It is not a good day at all, I feel very shaky inside and swollen outside, and just not right. I think I am getting ready to go through a bigger flare. I am not done with the flare that put me in the hospital but I feel another bigger one coming. I am running a temp again only this time it is 101.2 and my head hurts and I feel funny and my legs have knots all over them and yes I mean knots not sure what that is all about? Never heard of it before but they are there. Plus I slept even worse than usual last night and the rash on my face is worse, so all the symptoms point to getting ray to go into a flare when I am still under doctors care for a flare that has not went into remission. I am getting worried. I can not come to work like this every day yet at the same time I can not afford not to-I do not know what to do. I wish I had a guardian angel like Frenchie did in Grease. Grease is one of my favorite all time movies and I really need a guardian angel to come and help me figure out what to do. Anyone know where I can find a spare one?

Posted by Lisa at 10:49 AM | Comments (0)

Make the Whole World Smile

It is not surprising knowing my political leanings that I would find this joke true and funny!

George and Laura Bush were on a private...

George and Laura Bush were on a private jet en route to a public speaking in Florida.
After staring out the window with a curious look on his face he turns to Laura and says, "Hey Laura, how about I throw a $100 bill out of the airplane and make a person happy?"

Laura replies, "Well, why don''t you just throw two $50 bills out of the airplane and make two people happy?"

George W. thinks about this and replies again with excitement, "I know what I''''ll do! I''''ll throw five $20 bills out of the airplane and make five people happy!"

The pilot of the jet turns around with frustration and says, "Why don''''t you both jump out of the airplane and make the whole world happy?!"

Posted by Lisa at 10:48 AM | Comments (0)

January 10, 2005

In depth explanation of some of the symptoms involved with Lupus

Systemic Effects

Constitutional

90% of patients with SLE experience fatigue. Arthralgia and myalgia often accompany complaints of malaise. A less common but more serious constitutional feature of SLE is persistent fever and weight loss.

Musculoskeletal

Approximately 90% of patients with SLE have musculoskeletal symptoms. The typical clinical manifestation is arthralgia. The joints most commonly involved are the proximal interphalangeal, metacarpophalangeal, wrist, and knees. In contrast to rheumatoid arthritis, however, lupus is rarely accompanied by frank articular erosions. When arthritis occurs in SLE it usually is the consequence of periarticular inflammation with involvement of tendons. This can lead to Jaccoud's arthropathy which is notable for reducible deformities. Myalgias are another common feature of SLE. Less common is frank inflammatory myositis which occurs occasionally during the course of SLE. Steroid induced myopathy is a potential source of confusion. However, with inflammatory muscle disease, there is usually an elevation of the muscle enzymes, such as creatine phosphokinase, lactate dehydrogenase or aldolase.

Mucocutaneous

Mucosal ulcers are not an infrequent complication of lupus, occurring in 30% of patients. They most often occur on the hard or soft palate but also may be found on the nasal septum. The ulcers are usually painless and undetected by the patient but may be painful when there is a secondary infection, such as oral candidiasis. It is controversial whether the ulcers represent a simple inflammatory mucositis or a frank vasculitis of the mucous membranes.

Approximately 80% of patients with SLE have dermatological manifestations during the course of their illness. The acute cutaneous eruption is manifest as a photosensitive rash which often has a butterfly appearance by virtue of involving the bridge of the nose and malar areas of the face. A characteristic feature of this rash is sparing of the nasolabial folds. Photosensitivity is less common in patients of color but occurs in 50% of all patients with SLE. The rash of subacute cutaneous lupus is observed in anti-Ro positive patients. This eruption is intermediately photosensitive and can either have an annular, polycyclic appearance or a more papulosquamous, pityriasiform, or psoriasiform appearance. 25% of patients with SLE have discoid skin lesions. These lesions are often on the face with a predilection for the inner pinna of the ear but are not photosensitive. These lesions are characterized clinically by follicular plugging, skin atrophy, scaling, telangiectasia and skin erythema.

Alopecia occurs in 50% of patients. Typically this is manifest as reversible hair thinning during periods of disease activity. This is demonstrated by the ease with which hair can be plucked from the scalp and the development of "lupus hairs" (i.e. short strands at the scalp line). Following an acute, usually febrile, exacerbation of SLE patients may experience precipitous generalized hair loss as part of a telogen effluvium. This results from a period of arrested hair growth during the acute episode. Discoid lesions involving the scalp leads to scarring alopecia.

Unusual cutaneous manifestations of lupus include urticaria, angioedema, bullae and panniculitis known as lupus profundus.

Raynaudus phenomenon is observed in 30% of patients. Livedo reticularis occurs with increased incidence in patients with SLE. Livedo also may be a marker for patients with SLE and the secondary antiphospholipid antibody syndrome. Digital purpura is another manifestation of SLE and may occur as the consequence of vasculitis. Palpable purpura with histologic evidence of leukocytoclastic vasculitis is an occasional feature of SLE.

Serositis

Inflammatory serositis of the pleura, pericardium and peritoneum occurs in 50% of patients with SLE. This may produce pleuritis, pericarditis and medical peritonitis. These may occur in the absence of any significant effusion and represent a non-effusive serositis. Alternatively, patients can develop large pleural effusions, pericardial effusions or ascites. These effusions are typically inflammatory and exudative. Frank cardiac tamponade has been reported, albeit, on rare occasions.

Hematological

Anemia of chronic inflammation is a common feature of exacerbated SLE. Coombs positive hemolytic anemia with an acute declining hematocrit and reticulocytosis is a characteristic but not especially common occurrence in SLE, appearing in 10% of patients. Autoimmune thrombocytopenia purpura can be a presenting feature of SLE or occur at any time in the course of the illness. Thrombocytopenia as a consequence of the antiphopholipid antibody syndrome has also been described in SLE. Leukopenia with lymphopenia is also a characteristic feature of SLE. Interestingly, when this occurs in the absence of cytotoxic drug therapy of the illness, it is not a significant risk for infection.

Renal

Although pathologically the majority of patients with SLE may have glomeruplopathy clinically relevant kidney disease occurs in about 50% of patients. This is usually the consequence of the deposition of immune complexes containing anti-DNA in the kidney. Serum antibodies to anti-DNA are a marker for the development of renal disease. Hypocomplementemia is often a harbinger of active renal disease. Mesangial lupus nephropathy is generally associated with an excellent prognosis. Proliferative lupus nephropathy, especially diffuse proliferative, often has a nephritic picture with hypertension, urinary red cell casts and can be accompanied by significant deterioration in renal function. Nephrotic syndrome in the absence of hypertension, active urinary sediment, or significant hypocomplementemia suggests membranous lupus nephropathy.

Central Nervous System

Neuropsychiatric complications occur in 50% of SLE patients and include acute and chronic, as well as focal and diffuse manifestations. Cerebral vascular accidents are the consequence of either inflammatory or non-inflammatory, thrombotic vasculopathy in the central nervous system. Seizures complicate the course in 25% of patients with lupus. Diffuse cerebral dysfunction is manifest as an organic effective disorders, personality disorder, psychosis, or coma. Vascular or migraine headaches occur in 10% of lupus patients. Recurrent involvement of the central nervous system may result in an organic brain syndrome and dementia.

Secondary Antiphospholipid Antibody Syndrome

Patients with SLE have an increased incidence of the antiphopholipid antibody syndrome. This syndrome is defined by the co-occurrence of thrombotic events and the presence of autoantibodies against negatively charged phospholipid, such as a biological false-positive VDRL, lupus anticoagulant, or anti-cardiolipin antibody. This syndrome occurs most frequently in patients with high titer IgG anti-cardiolipin antibodies or lupus anticoagulant. Patients with this disorders are at risk for recurrent arterial and venous thrombosis, thrombocytopenia, and fetal wastage. The mechanisms of this prothrombotic diathesis are uncertain, but these autoantibodies, perhaps interacting with co-factors, bind to target antigens on endothelial cells, platelets or coagulation factors producing a hypercoaguable state.

Ocular

Patients with lupus may develop anterior uveitis or iridocyclitis. Frank retinal vasculitis has been described, as well as central retinal artery occlusion, central retinal vein occlusion and ischemic optic neuropathy. Xerostomia with keratoconjunctivitis sicca is seen in 10% of patients.

Lung

As mentioned, the most common involvement of the lung is inflammatory serositis producing pleuritis. However, patients with lupus can also develop transient hypoxia on the basis of pulmonary leukosequestration, inflammatory pneumonitis, interstitial pulmonary fibrosis, pulmonary hypertension, diaphragmatic dysfunction, and phrenic nerve palsy.

Cardiac

The most common cardiac manifestation is pericarditis with or without effusion. Additionally, patients with lupus can develop myocarditis. Nonbacterial verrucous endocarditis or Libman-Sacks endocarditis produces millimeter vegetation on the mitral and aortic valve. These are usually asymptomatic and an incidental pathologic finding at autopsy. Rarely, they can be a cause of cerebral or coronary artery embolization. Thrombotic valvulitis and thrombosis of cardiac chambers have been described in patients with the antiphospholipid antibody syndrome. Active SLE can be accompanied by coronary artery vasculitis and, on rare occasion, this has produced myocardial infarction.

There is an increased incidence of atherosclerotic heart disease in SLE, including in premenopausal women. This may be related to coronary artery pathology initiated by immune complex deposition, but certainly is aggravated by chronic steroid therapy which can produce hyperlipidemia and hyperglycemia. Additionally, the hyperlipidemia of the nephrotic syndrome that can accompany lupus nephritis promotes atherosclerosis. SLE patients with the secondary antiphospholipid antibody syndrome also develop myocardial infractions but on the basis of bland coronary artery thrombosis.

Gastrointestinal

Medical peritonitis with or without ascites is a manifestation of lupus serositis involving the peritoneum. Less common manifestations of lupus involving the gastrointestinal tract include mesenteric ischemia from mesenteric vasculitis and pancreatitis. The latter can be a manifestation of disease activity, or less commonly, a consequence of disease treatment as with steroids. Nonspecific inflammatory liver disease has been described in lupus. Liver function abnormalities in lupus, however, are most commonly explained by idiosyncratic reactions to aspirin, anti-inflammatory drugs, hydroxychloroquine, or azathioprine. Progression to cirrhosis as a consequence of inflammatory liver disease in SLE is rare.

Posted by Lisa at 04:40 PM | Comments (0)

Some treatment for psoriatic arhtritis

There is not alot they can do for psoriatic arthritis, most treatments are to help stop the disease from progressing-there is nothing that can be done to reverse it.

Some treatments that help are:

Skin care
Light treatment (UVB or PUVA)
Corrective cosmetics
Medications: glucocorticoids, NSAIDs, DMARDs (disease-modifying anti-rheumatic drugs) such as methotrexate, sulfasalazine, gold, cyclosporine
Exercise
Rest
Heat and cold
Splints
Surgery (rarely)

Posted by Lisa at 04:33 PM | Comments (0)

Treatments for MCTD

The treatments for Mixed Connective Tissue Disorder are similar to those used for other autoimmune diseases. There are few studies of the effectiveness of most of the medications since this is such a rare disease. There are medications to control symptoms, as well as anti-inflammatory, immune suppressing, immune modifying, which are used to try and change the course of the illness.

Many medications are used to control the various symptoms. Patients often need to take a combination of medications to eliminate pain and reduce symptoms. These can include aspirin, Tylenol anti-acids, medications for diarrhea, reflux. Heart medications sometimes help control the Raynaud's symptoms (cold extremities). There are ACE inhibitors which can protect the kidney from damage.

Medications for MCTD may also include other non-steroidal anti-inflammatory drugs, antimalarials, corticosteroids, and other immunosuppressants. Anti-inflammatories Steroids, d-penicillimine, and methotrexate are used to reduce inflammation that seems to lead to fibrosis. But, they depress the immune system and there are great risks from the long-term side effects. Since the immune system is suppressed, infection and cancer is a concern. As newer and better drugs are proven effective, these drugs will not be used in the future.

Other treatments used with people with serious symptoms are the cancer and organ transplant medications. These medications also depress the immune system. Presently Cytoxin a cancer fighting drug is being tested in many sites around the nation. Even stem-cell transplant, which is a very high-risk treatment because it wipes out the immune system totally, has been used with some success in the few patients who have undergone that treatment.

Posted by Lisa at 04:31 PM | Comments (0)

Found a new lot

Did not update yesterday as there was no time-we spent all of yesterday looking for a new lot to move our mobile home to. We found one it is in Parkersburg so it means changing the kids schools and such but they both are fine with it and fortunately the one we found is in a school district where they know a few kids already so that should make the adjustment easier on them.

This park is so much nicer than the one we were living in and has off street parking so you do not have to park in the road and it is closer to mine and my husbands work. Now all we have to do is get ahold of the guy who moved out trailer to begin with and get him to move it to its new location and get our utilities switched over and we will no longer be homeless!! That is a big relief.

You ever discover when you are diagnosed with a chronic illness people closest to you do not want to learn anything about it? If I was diagnosed with cancer-my family would be reading everything they could find so they could come up with ways to help me but since what I have has no cure they seem to not want to read it or learn ways to help me cope. I keep hoping someone in my family will show a desire to learn more about the illnesses that are threatening to take over my life but there does not seem to be alot of interest. My husband only seems to notice if it affects something he wants me to do for him. He is supposed to be my partner yet he shows no interest in helping me or learning about what is wrong with me and what causes all of my symptoms. It is frustrating to say the least.

Gotta run-have to get the kids to school and have to get to work-odds are high I will not update further today as I have to work from 8-8 today and it is a long exhausting day at best.

Posted by Lisa at 03:35 AM | Comments (0)

Rules for Employment

Alot of companies would adapt these policies if they could-LOL

New Rules For Employment

SICKNESS AND RELATED LEAVE: We will no longer accept a doctor statement as proof of sickness. If you are able to go to the doctor, you are able to come to work.

SURGERY: Operations are now banned. As long as you are an employee here, you need all your organs. You should not consider removing anything. We hired you intact. To have something removed constitutes a breach of employment.

BEREAVEMENT LEAVE: This is no excuse for missing work. There is nothing you can do for dead friends, Relatives or coworkers. Every effort should be made to have non-employees attend to the arrangements. In rare cases, where employee involvement is necessary, the funeral should be scheduled in the late afternoon. We will be glad to allow you to work through your lunch hour and subsequently leave one hour early, provided your share of the work is done enough.

YOUR OWN DEATH: This will be accepted as an excuse. However, we require at least two weeks notice as it is your duty to train your own replacement.

RESTROOM USE: Entirely too much time is being spent in the restroom. In the future, we will follow the practice of going in alphabetical order. For instance, all employees whose names begin with ''''''''''''''''A'''''''''''''''' will go from 8:00 to 8:10, employees whose names begin with ''''''''''''''''B'''''''''''''''' will go from 8:10 to 8:20 and so on. If you''''''''''''''''re unable to go at your allotted time, it will be necessary to wait until the next day when your turn comes again. In extreme emergencies employees may swap their time with a coworker. Both employees'''''''''''''''' supervisors in writing must approve this exchange. In addition, there is now a strict 3-minute time limit in the stalls. At the end of three minutes, an alarm will sound, the toilet paper roll will retract, and the stall door will open.

PAYCHECK GUIDE: The following helpful guide has been prepared to help our employees better understand their paychecks:

Item Amount Gross pay $1,222.02 Income tax $244.40 Outgo tax $45.21 State tax $11.61 Interstate tax $61.10 County tax $6.11 City tax $12.22 Rural tax $4.44 Back tax $1.11 Front tax $1.16 Side tax $1.61 Up tax $1.08 Down tax $1.14 Tic-Tacs $1.98 Thumbtacks $3.93 Carpet tacks $0.98 Stadium tax $0.69 Flat tax $8.32 Surtax $2.23 Ma''''''''''''''''am tax $1.23 Corporate tax $2.60 Parking fee $5.00 F.I.C.A. $81.88 T.G.I.F. Fund $9.95 Life insurance $5.85 Health insurance $16.23 Dental insurance $4.50 Mental insurance $4.33 Disability $2.50 Ability $0.25 Liability $3.41 Coffee $6.85 Coffee Cups $66.51 Floor rental $16.85 Chair rental $0.32 Desk rental $4.32 Union dues $5.85 Union don''''''''''''''''ts $3.77 Cash advance $0.69 Cash retreats $121.35 Overtime $1.26 Undertime $54.83 Eastern time $9.00 Central time $8.00 Mountain time $7.00 Pacific time $6.00 Time Out $12.21 Oxygen $10.02 Water $16.54 Heat $51.42 Cool air $26.83 Hot air $20.00 Miscellaneous $113.29 Various $8.01 Sundry $12.09 ------- Net Take Home Pay $0.02

Thank you for your loyalty to our company. We are here to provide a positive employment experience. Therefore, all questions, comments, concerns, complaints, frustrations, irritations, aggravations, insinuations, allegations, accusations, contemplations, consternations, or input should be directed elsewhere.

Have a nice week.

The Management

Posted by Lisa at 03:33 AM | Comments (0)

January 08, 2005

Evening activities have changed ALOT

Most of us come home from work eat dinner relax and get a few chores done around the house before it is off to bed to do it all again the next day. In that respect I am much like everyone else-I just have to make minor adjustments to make it work. For example-I have become quite adept at using the crock pot, I can put something in it the night before and all I have to do is take it out of the fridge and put in on low in the morning and dinner is ready when I get home. Some mornings if it is a heavy dinner in the crock pot, I have to ask either my son, daughter or husband to put it on for me. Who I ask depends on who is not running behind at that point.

I also now have the children bring their laundry hampers to me and they have to separate their laundry when they get it to the laundry room. It is very hard for me to bend over and it is impossible for me to do it without alot of pain so this is an adjustment that we have all had to make.

My husband says I want to live in a hospital because he has never seen a cleaner more sterile enviroment than our home besides a hospital-LOL. That has not changed it just takes me alot more time now. If it is too much though I am learning how to let it go and do it the following day when I may be having a better day. Alot of "lupies" make the same mistake I do which is if I am having a really good day like a 4-5 on the pain scale, then I do EVERYTHING, because I do not know when the good day will happen again so if I get as much done as possible on those days then on the bad days there will not be so much to do. The problem with this type of thinking is overdoing it one day can cause you to be bedridden for two so before you over do it to that point you have to decide if what you are going to do is worth it to you. I will do that to go to something one of my children have going on, I will not do that (anymore) to scrub the kitchen floor on my hands and knees-I have to learn to be happy with the job the mop does. Not an easy task for me but one I have had to do. When it comes to your health you can not be too careful and realistically, if I want to be around to see grandchildren and bake cookies with them, then I have to pay attention now. Most people my age are not as aware of their joints and muscles as I have had to become.

It is funny when one finds out they have a chronic illness alot of thoughts run through their mind. Typical ones about money and children and how to go on having something resembling a normal life but depending on what age you are when you find out you have a chronic illness you also have other thoughts.

I have searched the web wide and posted the question in a couple of message boards that I belong to and I still have not gotten a good answer, I have gotten typical type of replies but not the meat and potatoes answers I am looking for so I have also decided to post it here because depending on your age-if you are reading this odds are lupus is affecting your life rahter it is yourself, a family member or a spouse.

If you are uncomfortable with sexual talk then you may want to quit reading this entry now.
Last warning..............................................
Ok-alot of the medicine that they put you on to try and help control your sypmtoms also cause a loss of libido. It is hard to feel turned on even without the side effects of the meds when your whole body hurts and you are either sweaty or clammy or cold depending on where your tempature is. I am still young enough to want to have a normal sex life with my husband. The problem with this is at least triple fold though. One-the meds I am on cause a loss of desire. It is not that I do not want to have sex, it is that sex does not occur to me to have sex anymore, it is the furthest thing from my mind most days. Two-My muscles and joints hurt and ache even on the pain meds. Now I am trying hard to not get too graphic however-there is no position that does not put pressure on your joints or muscles, there is no position that you do not have to use these in one way or another. Third-I have been running a tempature since April with maybe a day a week for break from it and that is it-who wants to have sex when you are already HOT, SWEATY and CLAMMY? Now if I was not married this probaly would not be as big of an issue as it is however, I am married and my husband is only 30. He obviously wants to have a sex life that includes equal participation. What I really need to do is talk to my doctor about it and hope she can give me some advice in this area. I do not know if she can or not. What has stopped me from doing this up to this point is the knowledge that this can go into remission at any point and if it does why bring up such an uncomfortable topic with my doctor if it is only going to be an issue once in awhile-like during a flare? OF course this last flare that I am still in has been going on since November and is showing no signs of letting up. When I took my tempature tonite it was 100.4 now that does not sound too bad to most people but most with lupus and I am one of them-do not have a normal body temp anyway. Normal body temp for me is 97.3 so you are talking over a three degree higher than usual temp as opposed to less than two degrees. Generally your tempature is one good way to tell if you are still flaring (besides the pain and fatigue)or if you are getting ready to flare if you have been in remission. An increase in fatigue for a lupie is kind of like an oxymoron simply because we are more prone to being excessively tired than average people anyway. One of the first signs that I had that something way out of the normal was going on with me was that I have always bounced out of bed in the morning and all of a sudden found myself turning off the alarm and oversleeping. Before I was diagnosed, I had overslept so often that my son had to go to lunch detention for being late to school so many times!! We finally had the children put alram clocks in their rooms to set so that they would get up and could wake me up as well. So far no one has been late since we did that.

I am going to wrap up tonight with this-life with lupus is ever-changing and is a journey as much into your soul as it is into your health. IF you are going to have to give up your career you will have to know that you have value as a human beyond your contribution as a breadwinner, for many that is a hard adjustment as well.

Posted by Lisa at 04:30 PM | Comments (0)

Famous People say the Dumbest Things :)

Intelligent Quotes

Question: If you could live forever, would you and why? Answer: "I would not live forever, because we should not live forever, because if we were supposed to live forever, then we would live forever, but we cannot live forever, which is why I would not live forever," -- Miss Alabama in the 1994 Miss USA contest.
"Whenever I watch TV and see those poor starving kids all over the world, I can't help but cry. I mean I'd love to be skinny like that, but not with all those flies and death and stuff," -- Mariah Carey

"Smoking kills. If you're killed, you've lost a very important part of your life," -- Brooke Shields, during an interview to become spokesperson for federal anti-smoking campaign.

"I've never had major knee surgery on any other part of my body," -- Winston Bennett, University of Kentucky basketball forward.

"Outside of the killings, Washington has one of the lowest crime rates in the country," -- Mayor Marion Barry, Washington, DC.

"I'm not going to have some reporters pawing through our papers. We are the president," -- Hillary Clinton commenting on the release of subpoenaed documents.

"That lowdown scoundrel deserves to be kicked to death by a jackass, and I'm just the one to do it," -- A congressional candidate in Texas.

"I don't feel we did wrong in taking this great country away from them. There were great numbers of people who needed new land, and the Indians were selfishly trying to keep it for themselves." -- John Wayne

"Half this game is ninety percent mental." -- Philadelphia Phillies manager, Danny Ozark

"It isn't pollution that's harming the environment. It's the impurities in our air and water that are doing it." -- Al Gore, Vice President

"I love California. I practically grew up in Phoenix." -- Dan Quayle

" It's no exaggeration to say that the undecided could go one way or another" -- George Bush, US President

"We've got to pause and ask ourselves: How much clean air do we need?" -- Lee Iacocca

"I was provided with additional input that was radically different from the truth. I assisted in furthering that version," -- Colonel Oliver North, from his Iran-Contra testimony.

"The word 'genius' isn't applicable in football. A genius is a guy like Norman Einstein," -- Joe Theisman, NFL football quarterback & sports analyst.

"We don't necessarily discriminate. We simply exclude certain types of people." -- Colonel Gerald Wellman, ROTC Instructor.

"If we don't succeed, we run the risk of failure." -- Bill Clinton, President

"We are ready for an unforeseen event that may or may not occur." -- Al Gore, VP

"Traditionally, most of Australia's imports come from overseas." -- Keppel Enderbery

"Your food stamps will be stopped effective March 1992 because we received notice that you passed away. May God bless you. You may reapply if there is a change in your circumstances." -- Department of Social Services, Greenville, South Carolina

"If somebody has a bad heart, they can plug this jack in at night as they go to bed and it will monitor their heart throughout the night. And the next morning, when they wake up dead, there'll be a record." -- Mark S. Fowler, FCC Chairman

“If we let the loggers go in and cut down all the trees we wouldn’t have a problem with forest fires.” – George Bush

Posted by Lisa at 12:31 PM | Comments (1)

Laughter is the best medicine

24 Fun Things To Do In An Elevator...

1. Grimace painfully while smacking your forehead and muttering: "Shut up, dammit, all of you just shut UP!"
2. Whistle the first seven notes of "It's a Small World" incessantly.

3. Crack open your briefcase or purse, and while peering inside ask: "Got enough air in there?"

4. Offer name tags to everyone getting on the elevator. Wear yours upside-down.

5. Stand silent and motionless in the corner, facing the wall, without getting off.

6. When arriving at your floor, grunt and strain to yank the doors open, then act embarrassed when they open by themselves.

7. Greet everyone getting on the elevator with a warm handshake and ask them to call you Admiral.

8. On the highest floor, hold the door open and demand that it stay open until you hear the penny you dropped down the shaft go "plink" at the bottom.

9. Stare, grinning, at another passenger for a while, and then announce: "I've got new socks on!"

10. When at least 8 people have boarded, moan from the back: "Oh, no, not now, damn motion sickness!"

11. Meow occasionally.

12. Holler "Chutes away!" whenever the elevator descends.

13. Walk on with a cooler that says "human head" on the side.

14. Stare at another passenger for a while, then announce "You're one of THEM!" and move to the far corner of the elevator.

15. Wear a puppet on your hand and talk to other passengers "through" it.

16. When the elevator is silent, look around and ask "is that your beeper?"

17. Say "Ding!" at each floor.

18. Say "I wonder what all these do" and push the red buttons.

19. Listen to the elevator walls with a stethoscope.

20. Draw a little square on the floor with chalk and announce to the other passengers that this is your "personal space."

21. Announce in a demonic voice: "I must find a more suitable host body."

22. Make explosion noises when anyone presses a button.

23. Wear "X-Ray Specs" and leer suggestively at other passengers.

24. Stop at every floor, run off the elevator, then run back on.

I will try to post at least one new joke a day to remind everyone that laughter truly is the best medicine-if you have a joke that you would like me to post-stick it in a comment. Keep it fairly clen though-we do not know who reads this or what age group as all age groups can have lupus.

Posted by Lisa at 12:24 PM | Comments (1)

Open Letter to Family and Friends

Having LUPUS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident , most people do not understand even a little about LUPUS and its effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand...... These are the things that I would like you to understand about me before you judge me....

- Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school, and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

-Please understand the difference between "happy" and "healthy" .When you've got the flu you probably feel miserable with it, but I’ve been sick for years. I cant be miserable all the time , in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say , "Oh, your sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

Please understand that being able to stand for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes ,or an hour. And, just because I manage to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of disease you’re either paralyzed, or you can move. With this one it gets more confusing.

-Please repeat the above paragraph substituting "sitting", "walking", "thinking", "being sociable" and so on.... it applies to everything. That's what LUPUS does to you.

-Please understand that LUPUS is variable. It's quite possible (for me, its common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying "But you did it before!" if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, it this happens please do not take it personally.

-Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me I need a treadmill , or that I just need to loose (or gain) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct....if I was capable of doing these things , don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do.

Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously LUPUS deals directly with the immune system, and because our immune systems don't work the way yours do this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, LUPUS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.

-Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now...it cant be put off of forgotten just because I'm out for the day (or whatever). LUPUS does not forgive.

-If you want to suggest a cure to me, don't .It's not because I don't appreciate the thought, and it's not because I don’t want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped , all people with LUPUS then we'd know about it. This is not a drug company conspiracy, there is worldwide networking (both on and off the Internet) between people with LUPUS, if something worked we would know.

-If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I'll take what you said and discuss it with my doctor. In may ways I depend on you....people who are not sick....I need you to visit me when I am too sick to go out....Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or the physical therapist. I need you on different levels...you're my link to the outside world...if you don't come to visit me then I might not get to you . ...and, as much as it's possible, I need you to understand me.

Although this is a Copyright of Fibrohugs.com we grant permission for anyone to use this at any time as long as the following "Copyright of www.fibrohugs.com Written by Ronald J. Waller" is fully visible.

I want everyone that wants to read this or print it or email to take advantage of the opportunity to do so. This is very useful advice to give out.

Posted by Lisa at 11:46 AM | Comments (0)

Adjust adjust, adjust!

Seems like for months now my entire life has been one big series of adjustments! We are staying at my dad and stepmoms house since our park got flooded out. It is very nice to stay here but I want to be at home. I am hurting everywhere today-if there is a place that can hurt it hurts on me.

My doctor said she doe not care what the rhuematologist said-she knows I have lupus and MCTD. She said alot of rheumatologists only see people with arthritis especially in our area because there is not that many people around here with lupus and she said that is why it is easier for him to diagnose psoriatic arthritis simply because he knows more about it. She has alot moregenerous opinion of him than what I do- I found him to be incredibly arrogant and bad mannered.

I am going to go look at the flood water today and see if you can see anything in my old neighborhood. We are not going back ther. We stayed after the first flood but with my health issues and all we can not stay again simply because if my husband had been over the road I would not have been able to deal with this crisis myself so it will be better if we live somewhere that has neighbors as well as no history of flooding.

Hope these adjustments stop soon-I can not adjust any further-LOL

Posted by Lisa at 06:34 AM | Comments (0)

January 07, 2005

What is Mixed Connective Tissue Disease?

This is the first chance I have really had to look up MCTD since getting the dx so I thought I would post what I found out. Not alot of information since this is a rare disoder but there is enough information to atleast give me an idea of what all I'm dealing with.

What is mixed connective tissue disease?

Mixed connective tissue disease, as first described in 1972, is "classically" considered as an "overlap" of three diseases, systemic lupus erythematosus, scleroderma, and polymyositis. Patients with this pattern illness have features of each of these three diseases. They also typically have very high quantities of antinuclear antibodies (ANAs) and antibodies to ribonucleoprotein (anti-RNP) detectable in their blood. The symptoms of many of these patients eventually evolve to become dominated by features of one of three component illnesses, most commonly scleroderma features.

It is now known that overlap syndromes can occur that involve any combination of the connective tissue diseases. Therefore, for example, patients can have a combination of rheumatoid arthritis and systemic lupus erythematosus (hence, the coined name "rhupus").

This definitely does explain more of my symtpoms to me.

Posted by Lisa at 06:41 PM | Comments (1)

At Dads

We will be staying at my dads for probaly at least one week. The mobile home has been pulled out of the danger zone and my husband said it looks like everything survived the trip. Now we just have to find somewhere else to put it. Have been sleeping mostly all day today, am so tired still but wanted to update real quick. There is a computer at my dads but I do not know for sure how often I will be able to access it so I will update as much as possible.

Posted by Lisa at 12:04 PM | Comments (0)

January 06, 2005

Now a Flood

I may or may not be updating for a few days to a week or more. We are getting ready to have another flood. We had one in september that was the worst the area had seen in 40 years-we had to evacuate. This one promises to be the same if not worse than that so this evening has been spent packing up and getting things ready. Our plan right now is to be out of here by 7am. And there is still so much to do! It is so late and I am so tired but there is a ton more work left to be done. One of my best friends came over to help and she was a tremendous help, I do not think she will ever know how much I appreciate her doing that tonite. She and I have been friends since we were three years old and I got her a job where I work so we are together all day every day and of course we have our squabbles like all friends do but crunch time we have always been there for each other, I do not think that will ever change. She was the first person I talked to after my doctor visit today which did not go well at all.

I went to the doctors office this morning to get the results of my latest blood work and for a follow up visit anyway it turns out I have SLE(systemic lupus) psoriatic arthritis and MCTD (mixed connective tissue disease) which I know nothing about and am wanting some time to investigate this farther. I do know that it means I have a multitude of other syndromes wrong such as raynaurds. As I learn more I will post more. I am going to quit here though as I am quite tired and quite depressed with the flood and evacuating and the diagnosis at the doctors office today-it simply was not a good day to be me!

Posted by Lisa at 08:07 PM | Comments (1)

36 going on 80?

I have lived my entire life in the fast lane. I am always first in line at the express counter. This has been a HUGE slow down for me. More often than not now I require the use of a cane to help me get around. I feel like people in stores and such look at me and wonder why someone my age would be using a cane. The few who do ask always ask if I have been in some kind of accident because it is not normal to see a thirty something walking with the aid of a cane.

The other thing that bothers me about the cane is my children. They are teen agers so it is already embarassing to admit you have a mom but especially to have a mom who is getting around on a cane?! I know they also feel that this is unfair to them. Last night my son asked if I would take him to Wal-Mart-mind you the night before he had asked if I would take him last night and I told him I did not see any reason why not. Then last night came and it was raining and I was hurting so bad that I could not do it. He is fifteen and was upset because I had told him prior that I would take him then the time comes to take him and I could not do it. I am hoping if I am still feeling so crummy tonite that I can get my husband to take him but he is not not adapting well to me asking him to do things for me anyway so I do not know if he will take him or not.

The kids did not ask for this diagnosis and neither did my husband but I think they forget sometimes that neither did I. It has affected my entire family but I am the one most affected and it is hard for me to be there for them and try to help them adjust when I am going through so many adjustments myself. My body does not work the way it used to and neither does my mind. It is a major conflict inside my own head when I tell yself I can do something and then I can not do it. I feel so betrayed by my own body!

It has been hard for the kids, the husband and myself but at least the kids do try to help me deal with it and they try to make life easier for me. It seems like they are now being forced in some ways to grow up quicker than I had ever wanted them to. I have heard it said that adversity breeds character and while I am certain that is true I also wanted my kids to be able to say they had a normal upbringing instead of saying they had to help take care of their mother-that is not fair. I do still do the majority of things so it is not as bad as some kids have had it but still not as good as I would have liked for them.

Posted by Lisa at 03:06 AM | Comments (0)

Buy Blue

With all of the talk about blue states and red states it is easy to understand how one gets lost in the shuffle. What if you are a blue person who happens through no fault of your own to be living in a red state? What can you do to show your lack of support for the current regime in power in DC and more importantly how can you make it hurt them? Some very intelligent people got together and created the website www.buyblue.com it lists which companies contributed what dollar amounts to what campaigns and urges readers to BUY BLUE. Conservatives only understand what hits them in the wallet as they have no heart to understand anything else. If you are so inclined-check out www.buyblue.com and see what companies put their money where their mouth is and share a similiar belief system as yourself.
Remember-I told you-I am politcally very liberal-so if this web site offends you simply don't visit.

Posted by Lisa at 01:56 AM | Comments (0)

Link to "Spoon Theory"

This link is must read for anyone with lupus or with a friend with lupus. It is often very hard for us to tell friends and family how we feel and the owner of this site has come up with a humourous yet true way to illustrate this often mis-understood disease.

I urge you to visit this site and read the spon theory.
http://butyoudontlooksick.com/spoons.htm

Posted by Lisa at 01:51 AM | Comments (2)

Suffering from a serious lack of sleep

It seems as if they get one symptom under control and a whole crop of new ones pop up! It is crazy. One of the things I have been having alot of troble with is sleeping-the pain in my legs makes it impossible to sleep for more than a couple of hours at a time and then I am up taking painkillers to try and grab a couple more hours of sleep. My husband says I am becoming addicted to the pain meds and I have honestly spoke with my doctor about that and she and I agree that that is a possibility but at this time it is better for me to not have to deal with the chronic pain that comes with both of these illnesses. I have to say at least my regular doctor is so supportive and concerned about me. I believe she truly has my best interests at heart instead of her pocketbook. When I was recently hospitalized over this flare, she came to see me every day and was so loving everyone thought she was my sister and not my doctor because of how friendly she was and how concerned she was for my well-being. I trust her 100% and that is very important in a doctor.

Speaking of which-I go see her this morning at 10:45 and I think she will be relieved that I am no longer hysterical. Last week I was borderline nuts. The pain, the conflicting diagnosis's and everyting had just got to be too much and mentally I was struggling to stay afloat. That is when she put me on the nerve pills as well as upped the strength of my anti-depressant. In order to be able to deal with the massive changes in my life you have to mentally be able to cope and sometimes that means temporarily taking meds until your thinking kicks in and helps you adjust. My diagnosis is so new that it is still all consuming and I am filled with fear and dread regarding the future. I know I will adjust but it does take time. I have only been officially diagnosed since November 19th and hospitalized on November 30th for pain and fever control so it is still very new to me. It is going to take some time to adjust I guess.

Posted by Lisa at 01:17 AM | Comments (1)

January 05, 2005

Meds for breafast anyone?

I am currently on what seems to me a staggering amount of daily medicines.

I am on 20 mgs of prednisone
400 mgs of plaquenil
900 mgs of neurontin
500 mgs of lodine (twice a day)
20 mgs of lexapro
7.5 lortab (as needed)
40 mgs oxycontin (twice a day)
5 mgs of klonopin
50 mcgs of synthroid (overactive thyroid disorder)
and just recently came off a 50 mg duragelsic patch for pain

The first nine meds I listed I have to take when I open my eyes and then I have to wait for them to "kick" in before I can attempt to get out of bed.

One of my new favorite saysings is-"try to spend at least 45 minutes each morning doing one sit-up." LOL

Posted by Lisa at 06:56 PM | Comments (1)

Explanation of Psoriatic Arthritis from Psorasis.Org

As I suffer from two auto-immune disorders I felt I should also include information about the psoriatic arthritis. When you combine the two chronic illnesses it is easy to see that I have my plate pretty full yet am still trying to live as a functioning adult and parent in the world. Some days are better than others however I had not had a pain-free day in almost one year.

Psoriatic arthritis is a specific type of arthritis. It causes inflammation in and around the joints, usually the wrists, knees, ankles, lower back and neck.

Psoriatic arthritis is a specific type of arthritis that has been diagnosed in approximately 23 percent of people who have psoriasis, according to the Psoriasis Foundation’s 2001 Benchmark Survey.

It commonly affects the ends of the fingers and toes. It can also affect the spine. The disease can be difficult to diagnose, particularly in its milder forms and earlier stages. Early diagnosis, however, is important for preventing long-term damage to joints and tissue.

Most people with psoriatic arthritis also have psoriasis. Rarely, a person can have psoriatic arthritis without having psoriasis.

What are the symptoms?
Stiffness, pain, swelling and tenderness of the joints and surrounding soft tissue

Reduced range of motion

Morning stiffness and tiredness

Nail changes, including pitting (small indentations in the nail) or lifting of the nail—found in 80 percent of people with psoriatic arthritis

Redness and pain of the eye, similar to conjunctivitis

How does it develop?
Psoriatic arthritis can develop at any time. On average, it appears about 10 years after the first signs of psoriasis. For most people it appears between the ages of 30 and 50. It affects men and women equally. In about one of seven people with psoriatic arthritis, arthritis symptoms occur before any skin lesions.

Like rheumatoid arthritis, psoriatic arthritis is thought to be caused by a malfunctioning immune system. Psoriatic arthritis is usually milder than rheumatoid arthritis, but some patients with psoriatic arthritis have as severe a disease as patients with rheumatoid arthritis.

Psoriatic arthritis can start slowly with mild symptoms, or it can develop quickly. It is very important to have as early and accurate a diagnosis as possible. Left untreated, psoriatic arthritis can be a progressively disabling disease. In fact, half of those with psoriatic arthritis already have bone loss by the time the disease is diagnosed.

Psoriatic Arthritis swelling the fingers and affecting the skin on the hands.

How is it diagnosed?
There is no definitive test for psoriatic arthritis, but the following steps are usually involved:

Person with psoriatic arthritis talks to physician

Physician may refer person to rheumatologist, who specializes in arthritis

Diagnosis is done by process of elimination using medical history, physical examination, blood tests to rule out other diseases and X-rays of the affected joints

Posted by Lisa at 06:49 PM | Comments (1)

What is Lupus?

I am posting this in the event that many are wondering what exactly is lupus? Since lupus is an auto immune disorder as is psoriatic arthritis it can often take a long time to diagnose as the symptoms mimic so many other auto immune illnesses. This is a frustrating process at best.

What is lupus?
Lupus is a chronic (long-lasting) autoimmune disease where the immune system, for unknown reasons, becomes hyperactive & attacks normal tissue. This attack results in inflammation & brings about symptoms.
What does autoimmune mean?
'Auto' means 'self', so autoimmune literally means that the immune system fights the body itself. Instead of fighting & attacking the bad tissues, such as viruses, it turns on itself & attacks the good tissues.
What is inflammation?
It is a protective process our body uses when tissues are injured. Inflammation helps to eliminate a foreign body or organism (virus, bacteria) & prevent further injury. Signs of inflammation include- swelling, redness, warmth & pain.
What are antibodies?
Antibodies are proteins produced by white blood cells (B lymphocytes). Their normal function is to glue up bacteria and make them easy for the white blood cells to capture and destroy. When the immune system goes wrong, antibodies can be formed that bind to bits of the body (an auto-antibody). Sometimes infection can cause auto-antibodies to be produced and this may be one of the causes of Lupus. The antibodies circulate in the blood, but some of the body's cells have walls permeable enough to let some antibodies in. These can then attack the DNA in the cell's nucleus. That's why some organs can be attacked during a flare while others aren't.
What are the different kinds of lupus?
Discoid lupus (also known as Cutaneous lupus) affects the skin.
Systemic lupus attacks multiple systems in the body which may include- the skin, joints, blood, lungs, kidneys, heart, brain & nervous system.
Drug-induced lupus may develop after taking certain prescription medications. Symptoms generally disappear after the drug is discontinued.
What are the symptoms of systemic lupus?
The symptoms can include- Arthritis (swelling and pain of the joints), muscle pain and weakness, fatigue, sun-sensitivity, hair loss, "Butterfly" or malar rash (a rash across the nose and cheeks), fever, anaemia, headaches, recurrent miscarriages. For more symptoms & descriptions of symptoms see the symptoms page. Some people will have only a few symptoms, others may have them all.
What are the symptoms of discoid lupus?
They include a variety of different looking skin rashes, photosensitivity, & sometimes mouth or nose ulcers.
How is discoid lupus different to systemic lupus?
Discoid Lupus is confined to the skin, whereas systemic lupus may involve any organ system in the body, as well as the skin.
Can discoid lupus turn into systemic lupus?
In approximately 10% of discoid lupus cases, it evolves & develops into systemic lupus. However, this can't be predicted or prevented from happening.
What is the difference between drug-induced lupus & systemic lupus?
Systemic lupus is irreversible, whereas drug-induced lupus generally is reversible. The symptoms of drug-induced lupus generally do not include- kidney involvement or central nervous system involvement.
What drugs are most commonly associated with drug-induced lupus?
The following medications have been definitely proved to be associated with drug-induced lupus-Procainamide (used for heart rhythm abnormalities), Hydralazine (used for high blood pressure), Isoniazid (used for tuberculosis), Quinidine (used for heart rhythm abnormalities), Phenytoin (used for seizures). There are other drugs which might possibly be associated with drug-induced lupus, but as yet there is no definite proof.
Should people diagnosed with SLE or discoid lupus avoid taking the drugs associated with drug-induced lupus?
Most of the drugs associated with drug-induced lupus can be safely used in people with SLE or discoid lupus if there are no suitable alternatives.
How soon after taking the drug do the symptoms appear, & how long after stopping the drug do they disappear?
Drug-induced lupus requires months to years of frequent use of a drug before symptoms appear. Usually symptoms disappear after six months after stopping the drug, but it could be days r weeks, it varies. The ANA may remain positive for years.
What causes lupus?
The exact cause is unknown, but it is likely to be a combination of factors. A person's genetic make-up & exposure to certain trigger factors may provide the right environment in which lupus can develop.
Is lupus hereditary?
It is suspected that people inherit something from their parents that predisposes them to develop lupus. They are not necessarily pre-destined to develop lupus, but they may be more susceptible. Relatives of lupus patients have an approximate 5-12% greater tendency to get the disease if family members have it.
How common is lupus?
It is not known why, but lupus occurs more often in certain ethnic groups. The incidence in Caucasians is approx. 1:1000. In African-Americans, the incidence is approx. 1:250. In Latinos the incidence is approx. 1:500.
What can trigger lupus?
It is believed that certain things may trigger the onset of lupus or cause lupus to flare, these include- Ultraviolet light, certain prescription drugs & antibiotics, infections or viruses, hormones & stress.
Are there any medications people with lupus should avoid?
There are no absolute contraindications to medications for people with lupus. But, as people with lupus are usually 'allergic' people, your doctor should watch for any connection between flares & medications, especially oral contraceptives, sulfa antibiotics & penicillin.
Is there a test for systemic lupus?
No, there is not a single diagnostic test for SLE.
Why is SLE so difficult to diagnose?
For a number of reasons-
SLE is a multi-system disease, & before a multi-system disease can be diagnosed, there have to be symptoms in many parts of the body & lab work (blood tests) that supports the presence of a multi-system disease.
SLE is also difficult to diagnose because it is a disease that does not typically develop rapidly, but develops slowly & evolves over time. Symptoms come & go, it can take time for the disease to show up in blood tests, which one time can be positive & the next be negative again. It can take months or even years for enough symptoms to show up for the doctor to be able to make an accurate diagnosis.
SLE is known as a great imitator, because it mimics so many other diseases & conditions, which often have to be ruled out.
SLE is difficult to diagnose because there is no one diagnostic test for lupus, the doctor has to do a full examination of the patient & do various tests, before looking at all the evidence & coming to a conclusion.
How is SLE diagnosed?
Physicians have to gather information from a variety of sources- past medical history, lab tests & current symptoms. They use a list of 11 criteria to help diagnose SLE. Generally, a person needs to satisfy at least 4 out of the 11 criteria before a diagnosis can be made. (see the diagnosis page for more info.)
What is the ANA test?
The anti-nuclear antibody (ANA) test is a blood test that measures the antibodies that are directed against various components of the nucleus, so-called anti-nuclear antibodies. The nucleus of living cells contains many chemicals, including the well known DNA & RNA. For reasons which are unclear, patients produce antibodies which are directed against a number of these molecules.Throughout the world, the ANA test has become the screening test for lupus. Patients with active lupus generally have high levels of anti-nuclear antibodies. About 95% of people with SLE will have a positive ANA test at some point during their disease. It is rare to have lupus & have a negative ANA test, however it does happen, it can also take a while for the ANA test to become positive. It is also possible for the ANA to convert from positive to negative following administration of steroids, cytotoxic drugs or kidney failure. Unfortunately, the ANA test, although a very useful screening test, is not specific to lupus. It can be positive in other connective tissue disorders, & also in healthy people. Therefore, a positive ANA test is not diagnostic of lupus, & is only an indicator. A positive ANA test only satisfies one criterion, a person would need to satisfy at least three additional criteria before a doctor would consider diagnosing lupus.
My ANA test came back 'Borderline Positive', what does this mean?
All lab tests have normal values. If a test comes back & the value is at the upper limit of normal, this is often referred to as being borderline. It is likely that a borderline positive ANA assumes more importance if other criteria are also present.
What doctor should a lupus patient see?
There are no rules here. Lupus patients can be diagnosed & treated by a number of different specialists, or indeed a combination which could include- rheumatologist, dermatologist, nephrologist, immunologist, or they can just be treated by their GP.
Do all lupus patients have the same symptoms?
No, symptoms vary from patient to patient. They even vary within one patient from time to time. Lupus is a disease that can attack different organ systems of the body, & it therefore affects everyone differently.
Can an individual with lupus continue to develop new symptoms?
A patient's symptoms can vary from week to week, even from day to day. However it is uncommon for the affected organ system to change, e.g. it is rare for a patient with kidney disease to develop central nervous system lupus.
Is lupus infectious or contagious?
No, it is neither.
Is there a cure for lupus?
At present there is no cure for lupus, but research is being carried out the world over, to find new treatments for lupus & to find out what causes lupus to develop, so there is hope for the future. However, lupus can be controlled using medications.
How is lupus treated?
The majority of lupus symptoms are due to inflammation & so the treatment is aimed at reducing that inflammation. There are four families of medications used in the treatment of lupus- Nonsteroidal anti-inflammatory drugs (NSAIDs), corticosteroids, antimalarials, & cytotoxic drugs (chemotherapy). For more information see the medications page.
What is a flare?
A flare is a sudden change of disease activity, for example, the development of new symptoms. A patient may suddenly feel weak & have joint & muscle aches. Flares can take on many different forms, indicating that the disease is quite active.
What is an exacerbation?
An exacerbation is a 'worsening' & is a term that is generally synonymous with a flare.
What is remission?
A remission is a period of disease-free activity. Certain cases of lupus have become permanently inactive, or in total remission. Although total remission is rare, partial remission - a definite, but limited, period of inactive disease - is more common.
How long will a flare last? How long will remission last?
There is no way of predicting how long a flare will last when it comes, nor is there any way of predicting how long remission will last when it comes.
What is the connection between lupus & allergies?
An allergic state produces a very specific antibody to substances such as drugs, pollen & grass. People with lupus are often very sensitive to such substances.
Is lupus a fatal disease?
The majority of people living with lupus today can expect to live a normal life span. About 20 or so years ago it was a different matter, many more people died from lupus. This was due to the fact that it was only diagnosed when it was very severe, & treatments weren't as effective. Now, with better diagnostic facilities, increased awareness & effective treatments, at least 90% of people with lupus will lead a normal lifespan. Lupus does vary in intensity & degree, & there are people who have a mild case, there are those who have a moderate case & there are some who have a severe case (severe organ involvement), which tends to be more difficult to treat & bring under control. Recent studies in longterm survival rates: Patients diagnosed with Lupus in 1990/95 have 92% chance of living more than the next 5 years (88% if initial diagnosis was lupus nephritis). This compares with 49% in 1960s. The figure has been steadily rising over the decades. Also remember that the chance of living more than the next 5 years for everybody, lupus patient or not, is less than 100%.
When people die of lupus, what do they usually die of?
Overwhelming infection & kidney failure are the two most common causes of death in people with lupus.
Are people with lupus more likely to develop cancer?
People with lupus are no more likely to develop cancer than people in the general population. However, people who have received certain chemotherapy drugs do carry the added risk of developing cancer sometime in later life.
Is there a connection between lupus & multiple sclerosis?
MS & lupus are both autoimmune diseases, & you can have both together, but they are diagnosed & treated in different ways. Lupus can sometimes mimic the symptoms of MS.
Is lupus like AIDS?
No. In AIDS, the immune system is underactive, but in lupus it is overactive. HIV (which can lead to AIDS) is transmissible, lupus isn't.
Can a lupus patient get another autoimmune disease?
Yes, & it is quite common. Antibodies can develop against a variety of organs, tissues or glands, resulting in many different diseases. Among the most frequently experienced autoimmune diseases for a lupus patient to have are Sjogren's Syndrome, multiple sclerosis, & Hashimoto's thyroiditis.

Posted by Lisa at 06:40 PM | Comments (0)

Letter to "Normals"

you are wondering how you can help your friend or loved one deal with lupus or any other auto immune disorder-maybe reading the following letter will help. This was found at a website alot of it does apply to me in particular-not all of it though-all of it does apply to people with chronic illnesses.

I’m not trying to speak for everyone, but from my own perspective I can tell you what I NEED from my family and friends and so seldom get.
I NEED TO BE SHELTERED dropped off at the curb and told, don't try to do that, let me help you.... There is so much going on in my body that I have no control over and it does get overwhelming and exhausting to my body.
I NEED TO FEEL PROTECTED even though I can't be safe on the inside at least I can feel if ANYONE or ANYBODY wants to "get at me" then they are going to have to "GO THROUGH" my protector.
I NEED TO FEEL CHERISHED as if my family or friends feel they are blessed for each day we have together, LIFE IS SO FRAGILE.
I NEED TO FEEL CARED FOR when I am feeling sick everything is hard to do, even dressing and I WOKE UP WITH ONLY 2 MILES OF ENERGY INSIDE OF ME AND A NORMAL DAY TAKES 25 MILES WORTH. I need someone else to say, "let me empty the dishwasher", or “so what do you need me to do?” I FEEL GUILTY when I can't do the daily inconsequential details that are the GLUE HOLDING THE HOUSEHOLD INTACT.
I NEED TO FEEL RESPONSIBLE I know the latest research, I am on the internet each day to learn more, please don't say B-12 might cure me, I’ve tried the miracle cures and read the articles. DON’T YOU KNOW how DISAPPOINTED I GET WITH MY OWN BODY for NOT COOPERATING?
I NEED TO FEEL FORGIVEN for NOT being a full person (in the world's view). You may not hold a grudge, I know it’s hard on you to pick up slack, but I don't FEEL FORGIVEN, I feel guilty.
I NEED TO FEEL LIKE PART OF A TEAM working toward a common goal (our life together) and it is OK if my main contribution is SPIRIT.
I NEED TO FEEL INCREDIBLE I get angry sometimes seeing a tennis mom sachet into lunch with the girls after a manicure. I WISH I had the energy to even have a manicure, let alone waste precious energy on such frivolous pursuits as gossip over lunch and judging other women's clothes and homes and accomplishments.
I NEED TO FEEL AFFIRMED So many people scoff when I can't "Do just this one little activity, and it IS EXPECTED." I get tired of feeling guilty for not BEING ENOUGH to people that I don't care about in the first place. When I rant over the injustice of my illness, don't try to talk me out of it, or encourage me, just say "I KNOW, IT ISN'T FAIR, YOU DON'T DESERVE THIS"
I NEED A FRIEND who is there for me on the good days and there for me on the bad days, too. I get left out of a lot, because I go for periods of time when I am unable to do much, they think I probably can't participate, so they forget about me, or just don't even invite me. It is LONELY being ill over a long term.
I NEED TO BE ENCOURAGED The thought of being sick like this for the rest of my life INDUCES WAVES OF PANIC. It sometimes seems like a life not worth living, the quality is so poor so much of the time. I’m a Christian, I have great faith, but it can be overwhelming, especially when it’s implied "if your faith were greater, or if you would just DECIDE not to be sick....." We HAVE ALL TRIED THAT - it doesn't work.
I NEED TO BE PRAYED FOR Frankly sometimes in the middle of the night when everyone is sleeping soundly and there are only the creaks of the house for company....I'm SCARED, REALLY SCARED. I wonder who will remember me when I’m gone and if I’m making any sort of impact on the world at all to validate my life. REALITY looms large and feels ominous. It seems like I’m PURSUED NIGHT AND DAY BY A STEALTHY UNSEEN STALKER, who knows my every move. It would feel wonderful to really believe I am actively prayed for.
I NEED TO BE ANTICIPATED if I am sick in bed, know that I am dying inside, because I am neglecting things that need to be done, and the PRESSURE AND STRESS TO GET WELL is VERY GREAT because I know when I do get out of bed THERE WILL BE EVEN MORE RESPONSIBILITY WAITING FOR ME than BEFORE I wore myself down into a state of exhaustion and bedrest. Just come on over and SILENTLY DO SOMETHING/ ANYTHING, and don't even expect gratitude, I may not even realize, but when I get up a lighter load will be blessed.
I NEED TO BE NURTURED I just got an email requesting a group of us to get a nice meal up for someone, because she is down with the flu, poor husband for taking care of her! I LIVE WITH THE FLU EVERYDAY OF MY LIFE! The last time a meal was brought to us, was a year ago, after I had been extremely sick for 6 weeks. Before that it was years. No one even THINKS of reaching out to a chronically ill person, because they might be EXPECTED to do it monthly or because they are so used to you being sick, they don't even realize sick MEANS SICK. Our families suffer too, and would like a warm meal, as much as the lady who just had a baby or the woman with toe surgery.
I NEED TO BE APPLAUDED give me CREDIT for being a SURVIVOR AND A THRIVER. TO KNOW that there are women out there who have never had more than a broken acrylic nail and an unreliable housekeeper, is infuriating sometimes, especially when it’s implied they must be better than me or I wouldn't be sick all the time and unorganized and uninvolved. I know we don't know what people's lives are like behind closed doors, but I would love, have prayed, to JUST BE SHALLOW FOR A DAY and take every STEP, BREATH AND ACTIVITY FOR GRANTED without deciding WHICH few things I could do today that will make a difference over the next 30 years (it is almost always be a good mom and wife).
I NEED TO BE RESPECTED I am intelligent, I am attractive, I was once beautiful.... It is depressing to swell into a stranger because of meds and to have no clothes that fit attractively. I'm too tired to shop for them, and if I did shop for new clothes, I wouldn't have energy to wear them anywhere anyway. I CAN DO THINGS, I just can't prove it very often. I AM SOMEBODY not a disease, but the disease overshadows my chance TO BE MYSELF.
I NEED TO FEEL NORMAL Sometimes it feels like a BOLT OF REALITY HITS ME, as if I JUST REALIZED I am not a healthy person for the very first time. It doesn't seem real or possible for a minute, almost shocking. I can't do everything, but sometimes it would be fun to just play with no worries. HELP ME ESCAPE for a few hours to a play or comedy club, somewhere different where no one knows and I can forget.
I NEED MY DIGNITY It’s important for me, with so little control over anything else in my life, to at least have my dignity. Please DON'T SPECULATE ABOUT ME with other family members or friends and compare notes about my progress or lack of progress or determination or mindset, or your opinion of what I could, should or ought to be doing differently. It is easy to be smug when you aren't wearing lead ankle weights each day and trying to walk through neck deep water, this is what it really feels like. Everything is ten times harder for me than it is for you.
I NEED TO FEEL ACCEPTED AND INCLUDED not like a project to be SCRUTINIZED for worthiness and validity. I’m not going to doctor after doctor and struggling to survive for ATTENTION. Believe me, if I wanted attention, I’m bright and capable enough to get it in other ways. I’d rather be noticed for my good qualities and accomplishments. Even if I were getting attention, which I’m not, it certainly isn’t worth all this seclusion and suffering. REALLY who WANTS to have medical tests run and spend travel money on medication?
Not every day is like this, there are good days, and that is what makes the bad days even more depressing sometimes, because you realize what you are missing.
DON’T TALK, JUST DO. Actions speak louder than words. You have the freedom to buy a plane ticket and go anywhere in the world and enjoy it. You can take a job, or join a club, or garden or take a hike or run in to a new shop or.............anything you decide to do on a whim. I have to think and plan and strategize. I am afraid to make plans because I really don't know if I will be able to follow through on them. Even planning takes energy, which may not leave enough energy for the actual doing. YOU PLAN SOMETHING and pull me along, with no responsibilities and NO GUILT if I can only do half of the plan...at least we will have done something.

Posted by Lisa at 06:23 PM | Comments (1)

Lupus often feels like it is me against them

Author: Karyn Moran Holton
Published on: March 1, 2000

DISCLAIMER: This article is very gender-biased, due to the fact that the majority of lupus patients are female. I apologize to the male lupus patients who are reading this, and I plan on writing an article in the future which specifically addresses the issues of male lupus patients, but for this month, you guys may want to skip over to the Sports Section! ;-) Let's face it--For a very long time, the medical establishment was run by men, for men, and with men in mind as "the average patient". Now the enormous wall has been breached, women are as likely to be doctors as men are to be nurses. It should be very easy then to get a male doctor to understand how a woman's body works, what can go wrong with it, and how an illness might affect her, right?
BZZZZZZ! Oh sorry! You missed the $64,000 question!
It is almost impossible to get an accurate diagnosis of lupus from the first doctor one sees, never mind on the first visit! Most women don't go to the doctor with a specific complaint until the problem becomes severe enough to interfere with their daily activities. The reasons for this may be due to the demands of a hectic schedule, the old habit of the woman being the caretaker and not the one who needs help, or the simple, old, and completely wrong belief that "It's just one of those things!"
It is not needful that women "learn to deal with" chronic pain, fatigue, hair loss and the other "vague" symptoms that lupus can present with, but sadly, we are often told this by our health care providers. Symptoms that can range from annoying to severly impairing can be dismissed easily with a "Well, that's what happens as we get older, isn't it?"
Many times, we don't even have the time to discuss our symptoms with our physicians, largely due to HMOs and insurance companies' interference with doctors. Doctors can be told they have a minimum quota of patients, or even have a limit on the minutes that they are expected to spend with each patient. This leads to cursory examinations, and almost no time for discussion between patient and physician.
However, speaking up for our rights can be more detrimental than taking this kind of neglect. Often, patients who have a list of symptoms to talk to the doctor about (and insist on discussing them all with the doctor), who don't allow themselves to be rushed, and who ask questions and offer opinions about their healthcare often get labeled "professional patients" and are not taken seriously by the health care team.
Worse can be the patient who not only insists on quality care, but suffers from chronic pain. It is frequently difficult to pinpoint a specific reason for lupus pain, due to the general inflammation that the disease causes. Patients who complain of non-specific severe pain are frequently labeled narcotic abusers, and get (shall we put it politely?) a less-than-sympathetic response.
It doesn't have to be this way.
There are several things that we as patients can do to ensure that we get the high-quality health care that we not only need, but deserve!
* Get informed, stay informed!
In order for you to make sure that your health care team knows all about your lupus, first you have to know all about your lupus! Get the facts! There is a lot of information on the Internet, you can get information from your local chapter of the LFA, go to the library and get the latest from medical magazines like JAMA and The Lancet, invest in a PDR or drug reference book, so you'll know what to expect from any new drugs. Knowledge is power--Use it!
* Talk to your physicians
Your physicians can't help you if they don't know what's going on with you. If you find that there's no time during your exams for discussion, schedule an appointment just for a conference. Let the receptionist know that you'll need at least 15-30 minutes of uninterrupted time with the doctor for this purpose. Bring a list of your concerns: questions, issues, signs and symptoms that you've noticed, things you absolutely must have, things you absolutely never want, treatment options you've heard of, anything at all that you want to let your physician know. This includes letting him/her know that you feel that you are not being listened to or taken seriously. Sometimes doctors get so preoccupied that they literally have no idea how they're coming across.
When discussing your symptoms, try to be as specific as possible. If you need to, keep a daily journal at home of how you feel each day, and anything you notice that is new. Bring this journal to the doctor with you. This can be especially helpful if you suffer from "Lupus Fog" and sometimes have difficulty remembering things.
* Get in touch with other Lupus patients
Aside from the obvious relief of talking with people who really understand how you feel because they're in the same situation, other lupus patients can be an untold wealth of information. Utilize their experience! Ask them if they've dealt with unsympathetic doctors, what worked, what didn't, etc. You might even be able to offer your expert advice on how to deal with this particular problem!
* Keep a current medical record with you
Each time you see one of your docs, get a copy of your medical record. Do this for each doc--PCP, rheumie, nerologist, nephrologist--everyone. Get copies of X-rays, lab tests, MRIs, or any other tests you have done. This lets you have all the info at your fingertips, and there can be no question of miscommunication. Your doc's office may charge a nominal copy fee per sheet of paper, but it's an investment in your health that I think might be worth it!
Keeping your own records is also useful when seeing a new doc--You don't have to deal with the all-too-common "Oh, we didn't get your chart--Please fill out this medical history quiz!" Think of it as a resume for your health!
* Don't let the pain do the talking for you!
It is very easy to let the pain and frustration of lupus take over and dominate our lives. In the war with the wolf, one of the battles is not letting ourselves become bitter and angry with the world.
Let's face it: People who don't have lupus will never understand how we feel. It's part of our responsibility to try to let them know how we feel in a way that won't alienate them and cut off our sources of help. Sometimes that means not saying "No you idiot! I didn't say it 'only hurts' in the morning! I said it's worse in the morning! It hurts all the time, and I want my @$%!%# pain meds now!" and simply taking a deep breath and saying, "No, I said, 'It's worse in the morning,' but the pain is constant. It's about a 6 on a 1-10 scale right now," and then pummelling the dickens out of a pillow after the yahoo leaves the room! :-)
* Raise Lupus Awareness!!
Be honest: How many times before you were diagnosed did you hear the word "lupus"? Unless you're a health care professional, or know someone personally with it, I'll bet it wasn't a lot! People need to be made aware of lupus and the effects it has on our bodies, our families and friends, and our lives. It's very easy for people to look at us and not take lupus seriously because of simple ignorance. Help spread awareness! Fund research, volunteer your time with lupus awareness groups, start support groups (on the internet if you have to!), and let people know that we're here, and we're fighting for our lives!
It's not always easy getting the care that you need. It's not always easy getting the respect that you deserve. Don't be afraid to say, "I don't like the care I'm getting--I don't think that it's helping me!" Get second opinions, ask questions, and don't be afraid of your doctors. After all, they work for you, don't they? :-)

Anyhow-keep asking keep going and keep perservering-some day you will get answers but only if you stick with it!!! Do not let anyone convince you it is all in your head or worse believe it yourself-your symptoms are very real and require prompt medical intervention. Change doctors, or whatever is necessary to get treated with the respect you deserve. You are your own best advocate!

Posted by Lisa at 06:15 PM | Comments (0)

Feelings of Isolation and Not being Understood

The Lupus patient may have to bear the burden of the illness alone, either because partners do not see a real and deserving condition, do not understand the nature of lupus or believe it is their life that is being damaged and thus turn away.

How true for me the above statement rings. Seems like my husband just does not get it or just does not want to and I am not sure which it is. I have always been the caretaker as most women are, and I am known for being very obsessive about my home and the conditions we live in. I like knowing everything is put away and will rarely go to bed at night if one thing is out of place or if there is even one dirty dish in the sink. So imagine how frustrating it is that what used to take a couple of hours now takes an entire day and then when I ask for the garbage to be taken out it is met with hostility! Mind you-I do all of the cleaning, I work full-time, I am responsible for the children and yet many people with lupus and psoriatic arthritis are on disability because of their illness! I have a copy of the rhuematologists report where he put I have SEVERE psoriatic arthritis and have trouble with all functions of daily living-even after seeing that my husband acts so put out if I ask for help. It is so exasperating! Then he blames my frustration on the meds I am on!! OMG that is like blaming a woman who is cranky on PMS! I told him-MY MEDICINE DOES NOT MAKE YOU LAZY!! I know it is a lot ot adjust to after almost 7 years of not having to do anything but I would not ask for the help if I did not need it-I have always been very independent and not needed anyone or anything-so if I ask for your help-believe me I need it or I would not ask. No one has ever accused me of being lazy in my life.

I am Buddhist and therefore try to live my life accordingly, however it is getting harder each day and each day I wonder if I would not be better off out of the relationship I am currently in. My husband acts like it will kill him if he has to move from the chair to do something. Even with all of the pain and swelling I have I can not sit still for any length of time my mind does not work that way. When I first came out of the hospital I was surprised that all I wanted to do was lay around for the first few days-I have never been like that. But once I realized this was my new reality and I was going to have to learn to live with it or let it live me I had a choice to make. I chose life and I chose to keep on keeping on until I can no longer do so. I am a realist so I know it may come to a point especially if there becomes major organ involvement that I will have to cut down considerable but until then I am going to do what has to be done every day even if it means taking extra pain meds to get through it.

And it is not just his refusal to help with the daily chores required to run a home-it is the way he talks to me and the children. The only time I raise my voice is to warn of impending danger or after asking nicely three times and getting ignored by my teen-agers. I have always been like that-I believe people do not need to be talked down to you can get that anywhere. In your home you should feel safe, loved, protected and like your home is a sanctuary from the rest of the world. But my husband thinks nothing of screaming and cussing at the top of his lungs over EVERY thing. It is ridiculous to me and to the children-we are tired of hearing it over and over again. He talks to everyone in the home like we are nothing more than people to be barked at over and over again and he wonders why I ignore him anymore. I try hard to not let it get to me because stress is one of the things that can bring on a flare and since I still have not recovered from this one I do not want to make it worse by getting upset all over again but it is so hard to not cry. I try to tell him that you do not talk like that to people you love but he says it is the way he has always been and is not going to change.

On the plus side-he has always helped me support my children as I do not get child support from their father and he has never ever complained one time about that and I know he loves me and the children I just wish he would quit yelling and cussing and start helping me around the house-right now I need him and I have tried talking to him to tell him that but he does not want to hear it. Any suggestions would be greatly appreciated.

Posted by Lisa at 04:13 PM | Comments (0)

Typical morning for me

Now LAL (Life after Lupus) I get up at 5 and take my meds which are on my nightstand with my ice tea, then I lay there for about 30 mins waiting for my joints to warm up and the meds to kick in, then I go to to the closest as I now take my shower in the evening, I choose what to wear and then I sit down. I rest for a few minutes from the strain of pulling my clothes off the hangers, then I put on my socks which are the hardest to get clear down there-these days I wish I was shorter so I would not have so far to go-LOL, then I stop to get my breath from this activity. Then after a brief rest I put my undergarments on and put my nightgown away. I have to look for something that will keep my joints warm enough to not ache so badly while I am at work yet cool enough for the days when the tempature in the office is too hot and flares my psorasis. Generally I settle for a light shirt with a sweater over it and casual dress pants. Can not wear dress shoes at all anymore as my feet are too swollen and they hurt too bad so what ever I wear I have to wear my tennis shoes with it. Not that it matters because when I get to my desk my feet have swollen more simply from the walk to my desk so I remove the shoes anyway. Anyway I digress-more of a now typical morning for me-Finally I am dressed but out of breath and wore out-the mere act of getting dressed has caused me to wish for enough time to take a nap. Now it is almost 6:00 am, so I have to feed and water the animals. This has ben made easier by location of food and supplies so this is not too hard anymore for me. I then have to make my bed-on the nights when my husband is OTR I only have to pull my side up since I do not move around much in my sleep. Fortunately since my joints hurt so badly today I only have to do that this morning and yes I can not leave the house if my bed is not made! It is not an option for me-LOL. After this I have to rest some more even if I only have my side to make.

Now I still have to do my hair and makeup and wake the children and get them moving. Does not seem like a lot yet when you have to break it down with rest breaks and the like it is so time consuming for me anymore. Most days I want to give up and stay in bed. I was so anxious to get back to work and be productive again so I do not understand why I just want to stay in bed or in my bedroom. I do not know if it is a side effect of the meds or if it is the illness itself but I am becoming very isolated. I do not want to see friends or talk on the phone nor do I want to leave my home-mostly my bedroom. It is so light and noisy everywhere else and I want to sit in the dark and quiet. I am debating on whether or not to mention this to my doctor because I already feel like I drive her nuts.

I plug my curling iron in and hope to have the upper arm strength to be able to curl my hair as it looks like something out of a B horror film if not. I then put on my moisturizer and anti-aging gel and take another break. Sometimes it seems as if I am on break more than I am getting ready but it can not be helped. All of my breaks last the bare minimum of time or I would have to get up even earlier. This is hard enough as I am still waking up every two hours in the night for something to drink. I wake up feeling like I am dying of thirst and so dehydrated. I read somewhere that the high doses of steroids can make you diabetic, as I have low blood sugar and diabetes does run in my family I am thinking I should have my sugar tested. Just to be on the safe side since I have been on massive doses of steroids for quite some time now.

Now it is time to wake the children and this is pretty easy fortunately. Both of them get up fairly well. My son wakes right up and always has the most beautiful smile he has done that since birth and at 15 I am proud to say he continues to do so. My daughter is not a morning person so she struggles more to get up than he does yet she does get up and most of the time in a good mood. That makes such a difference in how the morning goes as anyone with kids can attest. It is hard to have to rely on them for so much help but at the same time I am glad I can.

Now I have to get my make-up on-some mornings I skip this step all together as it is too much. I try because I think if I look better I will feel better but that is not always the case. Then the dog has to be walked. Most of the time one of the children will volunteer for this task other times I either have to assign it or do it myself. As it has been raining and I can not move too well at all-today I am looking for a volunteer or I will assign one to do so.

I always get my son to go start the car for me so it will be warm even on days like today where it is 57 out-the dampness really causes me a lot of pain even on the pain meds.

I have just read up through what I have posted and it looks like so much to do in the mornings, I can not believe how much my life has changed in such a short time. It seems like all I ever do anymore is whine about how bad I feel and I was never like that before. I had a hysterectomy and left the hospital a day earlier than the doctor recommended and was driving a week and a half sooner than they recommended and went back to work two weeks earlier than they recommended so I have always recuperated quickly and this is kicking my butt big time!! This is just one of the many life changing adjustments I have had to make since this flare started.

Posted by Lisa at 04:06 PM | Comments (0)

Symptoms of Lupus

Symptoms Possible causes
Rash on cheeks/nose Classic 'butterfly' rash seen in SLE.
Scaly, disk shaped scarring rash Discoid lupus, which can appear on it's own, or as part of SLE.
Itching/burning rash Subacute cutaneous lupus. Hives.
Mouth/nose ulcers A common symptom of SLE.
Easy bruising Could indicate low platelet count.
Alopecia (hair loss) Part of SLE/DLE, but can also be caused by steroids, cytotoxics or infection.
Joint pain/swelling Inflammation of the lining of the joint caused by lupus.
Muscle aches/tenderness Inflammation caused by lupus, can also be caused by fibromyalgia.
Fatigue A very common lupus symptom. Can also indicate other things such as anaemia or infection.
Fever A common lupus symptom, caused by inflammation or infection. Pericarditis, myocarditis. Vasculitis. Pneumonitis.
Headache Common lupus symptom. Can indicate CNS involvement.
Bleeding gums Could be caused by anaemia. Could indicate low platelet count.
Cold hands/feet Raynaud's phenomenon.
Pain in chest, relieved by sitting up Pericarditis.
Short of breath Pleurisy. Pericarditis. Myocarditis. Heart attack. Pneumonitis. Pulmonary embolism.
Swollen legs Pericarditis. Venous thrombosis (bloot clot)
Swollen ankles Kidney involvement.
Chest pain, worse when breathing in Pleurisy.
Red lace-like rash on arms and legs Livedo reticulares, a common symptom of vasculitis.
Weight gain Kidney involvement. Steroid side effect. Result of inflammation.
Weight loss Could be caused by active lupus. Could indicate problems with the GI tract.
Nausea/vomiting Medication side effect. Heart attack. Renal failure. Could indicate problems with the GI tract.
Frequent urination Urinary tract infection.
Foaming urine Kidney involvement.
Pain in back, around kidneys Urinary tract infection (kidney failure does not produce pain).
Confusion Could indicate CNS involvement.
Seizures Could be a result of lupus cerebritis. Possible reaction to medications.
Memory problems Common in lupus. Could indicate CNS involvement, or could be a drug side effect.
Dry eyes Sjogren's Syndrome.
Dry mouth Sjogren's Syndrome.

Posted by Lisa at 01:57 PM | Comments (0)

Personal Bio

I am a 36 year old married white female with two children. I am a Sagittarius, I read tarot cards. I am politically liberal with Michael Moore counted among my heros. I work in the financial industry of debt collection and have done that for almost five years now. It is an enormousy stressful job as no one is happy to hear from you and even fewer people acknowledge their own sense of responsibility for winding up in my office.

I am married for the second time, my first marriage ended as a result of my former husbands addiction to drugs, alcohol and his propensity towards violence. I did attend several meetings of a battered womens support group as well as indiviual counseling and ultimately volunteered for a time with the domestic abuse shelter in the area I was living in.

I was a child of a violent marriage that too ended in divorce when I was fourteen. I recieved both of my step parents in 1984. My step-father in July of 84 and my step-mother in October of 84. Both of my parents seem much happier in their second choices than they were in their first.

I have one natural brother from my parents marriage and one gift given brother from my step-mothers prior marriage. I have two neices from the gift given brother and two neices from my marriage, as well as two nephews from my marriage.

I was also blessed with two step-daughters from my first marriage both of whom are still in my life and I hope always will be-I also have a wonderful wife-in-law from the first marriage and she and I are fortunate that we never blamed the other we simply acknowledged we had made bad choices for a first husband-LOL.

I gave birth to four children however due to some really bad judgement on my part I only have two of them now, the other two reside with my mother and my step-father. So as you can probaly gather I grew up in what I affectionately now refer to it as "dysfunction junction". And unwittingly continued some of the bad patterns in my life for quite some time. There have been many periods of darkness in my life while I was searching for whatever it was I felt was missing from it. It seemed I spent the early years of my life trying to get away from the pain which included alot of self-medicating. I have several regrets of course however I can honestly say that I have made an incredible effort to overcome the adversity and have learned some tough life lessons which I blame for making me a much more compassionate empathetic person than I might have been if circumstances had been different.

Posted by Lisa at 01:36 PM | Comments (0)

Greetings from Lupie Land!

Hi! My name is Lisa and I have lupus and psoriatic arthritis. I wanted to start the health diary for two reasons. I wanted to be able to help those who are newly diagnosed as well as make things clearer to myself. I have always been a better writer than a speaker so it is easier for me to communicate with the written word.

I was and still am a normal person in mostly every aspect. I am married with two children and a cat and a dog. I work full-time in the financial industry and my husband is a truck driver.

I have always been an over active parent-I coached cheerleading for my daughters squad for three years, helped with my sons baseball team for several years and in general have at the minimum been there to cheer them on in every activity they persue.

When I first became ill, everyone said I was just overdoing things. My husband was over the road all week with his job rendering me a single parent with a full time job plus coaching cheerleading in the evenings and running to practices. I knew there was something more going on though. I went to quick care for a sore throat and left with a diagnosis of Epstein-Barr. I quickly read up on it and learned it was an auto-immune disorder that could flare up and fade away whenever it took the notion. I also learned that I was ran down and would need to cut down on the amount of activities that I did.

Posted by Lisa at 07:00 AM | Comments (0)