Main » Living with lupus
December 20, 2010
Its been a looong time:)
Long long time since I have been here but I believe I will be here more regularly now. I who if you ever have read this blog have fought going on disability for eight long hard years now and I gave in-I filed in April and was approved last month-so that is how my story goes now.
I have always felt that I look normal, people can not look at me and tell I am sick so I was too afraid of what people would think about me being on disability at my age and not obviously sick to the naked eye, but I can not work anymore and it was becoming glaringly obvious that something had to change or I would not have any quality of life. Imagine my surprise when as the "queen of de-nile" regarding my lupus I got approved right away and without an attorney! I cried the day I found out. They were not tears of relief they were tears of resignation. I was resigned to the fact that I truly truly am very sick and that was hard to learn lol. You would think with eight years of experience at this I would have already accepted it........acceptance is hard at least for me.
Posted by Lisa at 01:44 PM | Comments (1)
September 15, 2009
Narcotic addiction as a result
Hi :) it has been a LONG time since I have done an update. I am feeling ok most of the time lately but I have a BIG issue that I do not know how to resolve. I am taking this to the people who used to read this regularly in hopes that at some point you will see it and be able to understand what I am dealing with.
When I first started this blog about living with lupus I did not know how much it was really going to change my life. I have always been active and energetic and that changed, I have always been vain and that changed, I have always been optimistic and that has NOT changed fortunately. I have always said there were a few things lupus can not take away from me. My personality is one, my optimism is two and that fact that I am a raging liberal is the last one. LOL. I had posted an entry in 06 about painkillers. Now here I am in 09 addicted to perscription pain killers. My husband wants me to go to detox and I am scared. I need pain medication to get through the day, the reason I started taking so much is that it was not effective anymore having been on it for so long. I know I am an addict now also! I do not know what to do or how to handle it. Any suggestions would be fantastic. I feel like if I get off them totally I will not have any quality of life yet I feel like I am doing alot of harm to my body by taking as much as I take. There is no happy medium for me. I will update more later but wanted to stop and say HI and HELP me :)
Posted by Lisa at 10:46 AM | Comments (0)
September 02, 2006
Finally back online
This time the long dry spell was not laziness on my part-it was a lack of internet access. But I am finally back on and happy to be that way.
The past several months have been incredibly stressful, hectic and traumatic. My parents have split up after 24 years of marriage. My step-father left my mother for a woman younger than me! That was a huge shock to our family and all of their friends as they both are regular church-goers and stable people. This has hurt my mother alot as well as the rest of my family. There are also suspicions of a drug addiction. I do not know-it could also be like a middle age crazy type of thing.
My husband and children are doing well. The kids went back to school August 14th and so far seem to be enjoying it quite a bit.
I have been working like a dog!! I am a manager for Family Dollar (a retail company) and I love my job but it is so hectic right now. And I now have an ulcer on my cornea of my left eye. I have been on medicated eye drops for a few days now ad I think they are finally starting to work!! This is good news since I was reading an article that said if they d not heal with the drops then they would have to do a cornea transplant operation. I have no idea how that works but it sounds scarym Other than that and the typical fevers about once or twice a week I have not been feeling too bad(knock on wood) and I am grateful for that.
Anyway, it is hard to see with my eye messed up but I did want to drop in and update in case anyone is still reading this :)
Posted by Lisa at 05:16 PM | Comments (2)
May 24, 2006
How much sleep is too much and how much is too little?
Some days it seems like I can sleep for 15 hours without waking up and others it is a struggle to stay asleep at all. This is my first day off in over eleven days and I was hoping to go to the mall and get some things done but all I have done is sleep and catch up on my email (not at the same time-LOL).
This new job (it is not really new anymore) has really taken a toll on me but I do not know what else to do. The money is great but the job is hard and very physically demanding. It seems like there is so much to do and I can not get it done and done right. They do not want to give me enough hours to run the store the way it should be run and that makes it very hard also.
We had a VP visit yesterday at the store and they said it was the best the store had looked since they could remember and that made me feel good at least they did notice all my hard work but at the same time, it was like talking to a brick wall to get them to understand we need more hours, not just my store but all of the stores the company owns. It is impossible to keep the store as neat and tidy as I would like plus get all the freight on the shelves and take care of customers and do the paperwork and the myraid of other responsibilites when I can not utilize my help in the best most efficent manner.
I try to remember what my doctor said-STRESS=PAIN, but my gosh-my husband has told me since day one, if I took this job he would take care of the house since I put in about 60 hours a week and he works 40, but that is not being done-he has Saturday and Sunday off every week yet today is my first day off in eleven days and I have had to cook dinner every night this week and last week and make sure the kids are doing their chores and doing all the follow through because he is still doing nothing. He gets off work and he is done for the night. I get off work and have to come home and continue working and I am fed UP!!
I think the biggest part of my problem right now is through friends I have heard in the past week about three people with lupus dying. I get scared especially when I am still running a fever so much and I am so swollen and sore everywhere. It just serves as a constant reminder that I am not the person I used to be and I will probably never be again.
My mother and my stepfather are getting divorced and that was a big surprise-they have been married for almost twenty-four years-he was having an affair. My mom is really struggling because of this and she has COPD and other health problems and I am worried about her and now I am so far away in Florida and I really think I need to go home and try to be there for her. My husband is going to throw a fit if I suggest going home. Part of the reason we moved here was because his mother was alone and I did feel like we should be here for her even though she has two other kids living in the area, but now I feel bad because my mother is alone. I wish I had a guardian angel who could tell me what to do...................then again I am sure we all do.
Posted by Lisa at 07:36 AM | Comments (1)
May 16, 2006
Long time no see :)
Finally I am back online-it has been forever!! First of all let me say it was nice to read the comments-it reminds me of why I am doing this even though at times it is sporadic-I was offline for so long due to money problems. It is not only physically, and emotionally a draining disease but it is also financially difficult.
I am still in the midst of a "flare" and I have started a new job about 6 weeks ago and I just keep hoping that I can keep it together so I do not lose this job. I am managing a retail store which is GREAT money and I love the job but it is so demanding and too many hours and I wonder honestly how long I will be able to do it. It is between 60 and 75 hours a week which is hard for someone in good health but even harder for someone who has a constant fever and swollen achy joints.
I have had a bothersome symptom lately also. I have had the numbness and tingling in my legs, arms and private area for over a year now (coming and going) but now I am waking up every night with my arms tingling really bad sometimes I have to wake my husband up to rub them because I can not move either of them well enough to rub them. This is really troubling me-if anyone reads this and knows what could be triggering it PLEASE tell me as it is scary, anyway that is all for now-take care and NAMASTE :)
Posted by Lisa at 05:30 PM | Comments (0)
March 02, 2006
Have not updated again in a few
This time the lack of update is my computer's fault-not mine-LOL. It will be a few more days that it is down but I am at my mother-in laws-so I wanted to update real quick. Have been very sick-ended up quitting my job for a better one that I had to quit two days in because I was simply too sick to work right now. Spent all day yesterday at the emergency room with such a crippling headache that I could not even see straight................am hoping the worst of this flare starts to subside soon as I need an income.........anyway hopefully my computer will be up and running again within a few days.............Namaste
Posted by Lisa at 09:01 AM | Comments (2)
February 21, 2006
New pain meds-still no relief
Had to leave work early today again. I am so afraid I am going to get fired for missing so much but my head hurts so bad it hurts to lift it. I go to the endocrinologist tomorrow morning to find out what the plan is for my thyroid and my doctor said today he is going to call the rhuemy because I am not showing any signs of getting any better-seems to be getting progressively worse. My vision is very blurry, the left side of my face is numb and tingling, the left arm and the left leg are doing likewise-doc took my bp and said he does not think I am having a stroke just problems related to the flare which was a relief but at the same time, I need a break from the pain!! He put me on 20 mgs of oxycontin to take every 12 hours. I took two even though it was not 12 hours and still no relief...........he is sending me to a pain management clinic so hopefully they will be able to come up with a combination of pain meds that will at least allow me to function...........this is crazy-MY HEAD HURTS SO BAD-I feel like it is going to explode. It has been doing that since I opened my eyes today and as the day progressed my vision got blurrier and blurrier......I can see just real foggy like I am not really seeing anything but shadows and outlines kinda-I do not know how to explain it. Anyway that is today's update-just a lot of groaning. LOL NAMASTE
Posted by Lisa at 04:15 PM | Comments (0)
February 19, 2006
How do I do this and make it fun for my family?
I am so worried about how my family is going to cope with me so much worse, it is already hard on them and I suppose it will not get any easier. If anyone has insight on how to make this easier on my loved ones please let me know-trying hard to figure it out.........
Woke up again with a fever, but at least it broke early, no excuse right now as to why I feel so lazy and unmotivated to do anything- there are so many things I need to do but I can not seem to make myself get up and do them. I am not ready to go back to work tommorow at all-I need a couple of days off with no husband and no kids, where I can just lay around get dressed when I want to and if I want Total for dinner, pour a bowl and call it done. I think even healthy normal people want that once in awhile.........maybe I am not so different from everyone else as much as I think I am.
They have been researching stem cell treatment for lupus. I wonder how bad yours needs to be before they will try it on you. I would volunteer to be a guinea pig for this research. Even if it does not spare me some of the worst parts of this disease maybe they would learn something that would spare others from some of the trauma this causes.
I am homesick also-I want to see my mommy but it is not possible right now. My husband does not understand why I am homesick already and I do not know how to explain it to him, but part of it is because I have no friends here and I am lonely. I am used to having friends to go to the mall with or just to hang out and I do not have that at all here. I do not know why people do not seem to want to be my friend here. My husband says I am not trying hard enough to make friends here. Maybe that is true but also I don't go anywhere but work and home. Most days it is a struggle to accomplish that.
I wonder if there are any lupus support groups in Naples?
Namaste
Posted by Lisa at 11:15 AM | Comments (0)
February 18, 2006
fat, scarred and less than human............that is my future
Have not updated since right before the rhuemy visit because I have been very depressed...........unless they do a spinal tap they can not confirm that I have lupoid sclerosis even though the majority of the bloodwork came back indicating that I probably do, that was not a huge surprise, it was depressing but not a big surprise. The big surprise was that my thyroid (once overactive) is now producing NO thyroid hormone and I am back on 30 mgs a day of steroids, indefinetly. I go to the endocrinologist on Wednesday and they said not to be surprised if with all the hot nodules and goiters if they want to remove the thyroid. For those of you who do not know how that is done-they cut your throat. Lovely scar huh?
One of the psychological problems I carry from my past is the FEAR of being fat-I rarely eat a dessert due to calorie content and I rarely eat seconds even if I am still hungry because I know there are fat genes waiting to get out. Now with the thyroid not working and on the steroids for who knows how long-I am going to get fat also. How much more can one person take before they give up? I am still running a fever and feel like hell, hurt all over and now this too. I know I am sounding like I am having a pity party and that is why I waited to update because I was much more depressed a couple of days ago. I guess when I think about doing this diary I wanted to make people feel positive about the disease and educate them as well but lately it is so hard to be positive........there is blood in my urine so there may be kidney involvement with this flare as well. Sorry to sound so negative but there just was not any good news for me..............maybe next time?
Namaste all :)
Posted by Lisa at 09:30 AM | Comments (0)
February 12, 2006
You give me Fever.........
I went to bed last night at 8pm. I woke up at 10 drenched in sweat from breaking a fever......then woke up at 2:00 am the same way. Finally got up at 7 this morning and by 8 was already running a fever again. I am really tired of the stupid fevers. I go back to the rhuemy tommorow and who knows what he will say-probably nothing new or informative. I am so down about this flare because you start feeling normal and then boom you are down again.
They want to put me back on steroids again and I do not want to go on them but I think I will have to-the fevers are not going away on their own nor with the other meds. Steroids are so hard on your body and so good at the same time. I look like hell again and I know that I should just go back on the steroids and not argue about it, but it is so hard to not eat everything in sight when you are on them. This last time I did really good though-I did not overeat at all. Anytime when I wanted more food I just reminded myself that it was the steroids and not that I was hungry and I walked away from the food, but the longer you are on them the harder that is to do. I would love to hear from others who have been on them what they did to avoid the cravings that come from being on them.
As soon as we get our taxes I am going to be starting real estate school her. I am excited about that and can not wait!! I will get the chance to make really good money and basically set my own schedule so if I am feeling crummy I do not have to do a lot. At least that will allow me to work around the lupus for the most part.
I asked my husband yesterday what do we do if I have that lupoid sclerosis and he said he did not know. I am really scared that the rheumy is going to tell me that I have that instead of just lupus or instead of just MS. It seems like I get used to the idea (kinda) that I have lupus and now they are throwing something else in the mix.
With a chronic illness like lupus it is easy to feel sorry for yourself and I do it frequently but I am trying not to as much anymore but it is so hard not to. I want to have energy, I want to feel normal again (whatever that is) and I want to be able to stay up late and do the things I used to do. Yesterday I got a lot done around the house but it seems as if I am paying for it today as I have no energy, no ambition, and a fever again :(.
If I have the lupoid sclerosis, I am afraid that I will lose the ability to walk, and I will lose my eyesight at some point-that terrifies me. I should not worry about it until I know more but I can not help it.
I am sure I will update more tomorrow after the rhuemy visit..................namaste.
Posted by Lisa at 07:14 AM | Comments (0)
February 09, 2006
Sick and tired of being sick and tired
After all the damn blood they took on Friday, I got a phone call that for one of the tests, the blood was supposed to be kept frozen and the lab let it thaw out so now I have to go give more blood! That really sucks. Why did they mess up on mine after I had to give so much blood anyway? I know it can happen, but I am just aggravated because I do not like getting stuck at all and it seems like that is all they ever want to do is take more and more blood from me!
I am tired all the time again and still running a fever-it is crazy!! I have like one good day then four bad ones in a row and I know other people are sicker but I am too and I am still going to work every day-I need a long weekend that I can just stay in bed and eat pop-tarts-lol.
I go back to the rheumy on Monday and I hope he has good news for me instead of wanting more tests.
It is hard to have this disease and still look almost normal on the outside-it would be easier if I looked "broken" then people would know when they looked at me instead of looking at me like I am lazy-I want to scream that I am not lazy and I am not crazy!!!! I was normal once and I want to be again!!
If it sounds like I am angry and having a pity party it is because I am........................til next time...........namaste.
Posted by Lisa at 04:55 PM | Comments (0)
February 06, 2006
Mind numbing fatigue
Yesterday I went to bed at 3:00 pm. Mind you it was my intent to simply take a nap. I woke up at 6 and ate a piece of pizza, went back to bed, woke up again at 9, checked the score of the superbowl (CONGRATULATIONS STEELERS!!) went back to bed when the alarm went off this morning at 5:30 It took all of my will power to get out of bed-incredible-almost 15 hours of sleep and still my body was not ready to get up!! This lupus shit is too much some days...........I left work early today (only 30 minutes) because I am still running a fever and just so damned tired I can not even see straight. I think if they could do something about the fatigue and the pain, the rest of lupus would not be that unbearable for me to deal with. Sometimes it is so bad that I wish I did not have to deal with this anymore-but it beats the alternative.
It is 67 degrees here and I am freezing!! Amazing how much impact a fever can have on your body. Everyone is in t-shirts and I am in a sweatshirt and frozen-geez. Sometimes I get so sick of being sick. Other times I am much better about it knowing that there are a lot of people who suffer from this illness and a lot of them suffer from it far worse than I do. I am grateful that at least not yet there is no kidney involvement-see it could be worse :)
Anyway-I am going to go to bed. It is only 6:30 but I am wore out............namaste all :)
Posted by Lisa at 03:18 PM | Comments (2)
February 01, 2006
Starting Over Again.......
Yesterday I had to go to a new rhuemy. He seemed alright-a little arrogant but hey he was younger than me so he should be a little proud that he has done so well. His attitude was alright though-he was concerned, he was attentive to what I was saying and he believes that something needs to be done so I guess I can deal with a little arrogance..........
He asked me if I had ever heard of a condition that I can not even spell-let alone heard of before. I am going to spell it the way I think he said it-and if anyone reading this reconizes it-please leave me a comment and tell me I have spelled it wrong-thank you. It was called Lupideral Sclerosis?! Anyway he said it is lupus with MS!! He said he is going to look there first-very scary-but since my eyes were so messed up and since I have had so many epsiodes of numbness in my legs and arms as well as yesterday I had the malar rash (about time the damn thing shows up when someone who can help fix it is there) so he wants to rule that out before delving more into my immune system. I told him that my regular doctor did alot of tests and did a great job and I also told him she fired me. I told him why I think she fired me but that I was not sure. And he wants me to start Celebrex as soon as I get off this round of steroids-he said this dose of steroids is not going to fix me or even make me feel fixed but that it was a start. Friday I have to go have every drop of blood taken out (not literally) but it sure sounded that way. He wants an entire blood work up and I mean blood tests that I have never heard of even........damn........I told him I am starting to feel like a freak. I am so emotional lately again.
I am so guilty of not updating this unless I feel lousy-when I am feeling almost normal I do not update-this is wrong and I know it-I am going to work on not doing that this time. It is so hard to put into words what I am feeling right now. Anger, disappointment, and disbelief are close though. What do I do if it is lupus and ms? Who will take care of my husband and my kids if I can't?
Women spend their entire lives taking care of others-I think that is why immune disorders are more prevalent in women than in men-we are caretakers and sometimes we do not take very good care of ourselves in order to take better care of those around us. Or maybe it is the way we are set up-but there has to be a reason.
Most people (including me) are better when we have answers and now it is like he wants to start all over again. But it is a start so I can not complain and if I did who would care? LOL.
Anyway-will update more when I know more........................namaste:)
Posted by Lisa at 02:00 AM | Comments (1)
January 26, 2006
Too little sleep-too much pain
Stress=pain with lupus-that is drilled into your head when you have lupus. Over and over again you hear the same thing-STRESS=PAIN. Do not get stressed out, relax relax relax. The problem is no one ever tells you how to do that. How do you relax when you are in debt, overworked, exhausted, and do not see a bright spot anywhere? Maybe I will learn how to do that but right now I do not know how it is done and more important-no one has told me how to do it :)
I have not slept more that 4 hours a night all week-I am tired, stressed, hurting, and did I mention HURTING? This is awful. Some days I get so depressed over the way I feel that I wonder why I even bother getting out of bed. I used to be the mom who had everyone over and played HARD with all the kids-mine and everyone elses. My friends always wondered where I got the energy to play with the kids, keep my house like a museum, cook, work, study and now I do not have the energy to simply get through the day at work. I WANT MY LIFE BACK!!! If I sound angry today it is because I am. My kids deserve a mother who is not tired all the time!! I do not know how to deal with the lack of energy part of dealing with life with lupus. You would think by now I would have it all figured out but I don't. All I know for sure is IT SUCKS!!
If you have any tips that you think would help please feel free to leave me a comment and let me know-thanks :)
And remember in the words of Martin Luther King Jr.- "Our lives begin to end the day we become silent about things that matter."
Have a great day everyone :)
Posted by Lisa at 02:05 AM | Comments (1)
January 25, 2006
Coping
I got a raise and a promotion at work last week.........it was a wonderful feeling knowing that my boss has that much confidence in me and in my abilities. The euphoria from that kept me going all week last week-now reality has hit. With the promotion comes a lot more responsibility which is fine-but I am so tired and I am so afraid that I am not going to succeed. In my LBL (life before lupus) I was never worried about that-I knew I worked hard and I knew what I was capable of-now though-it seems the harder I try the more mistakes I make. I do not want my boss to think he made a mistake by placing so much faith in me. My boss now is nothing like my boss up north. He is so calm and kind and just a WONDERFUL person. My immediate supervisor is wonderful as well and I think she is also becoming a friend of mine. I adore her as well........it could be worse........I could not stand the people I worked for up north as far as the way they treated employees and acted like we should be grateful to have the job-it goes both ways-yes I am happy to have a job but they should be happy also to have people working for them making them money.
Anyway-went to pick up my prescriptions from the pharmacy and one of the scripts they wrote for me was for prevacid for the ulcers-the insurance would not pay for it-said I was TOO YOUNG LMAO-too young for ulcers?! I can not believe it!! That is crazy!! Now I have to call the insurance company and see what the age is for ulcers!! And if I am too young for them now will they pay for other treatment to heal them?
Crazy crazy crazy..................
People with lupus have enough problems we do not need the added stress of insurance companies telling us we are too young or not sick enough for certain things-my gosh-how does an insurance company know things that the doctor does not know?
Posted by Lisa at 01:43 AM | Comments (0)
January 24, 2006
Living La Vida Lupus in Paradise
Hi! It has been awhile.............I do not even know where to start so much has been going on in my life lately. I think I should start with yesterday-I spent ALL day at the hospital here in Naples. Turns out I have two gastric ulcers and have to go see a doctor for them.....ugh. The week before last-I had pink-eye in both eyes and could not see for two days and found out that there is another lesion on the retina of my right eye-this makes seven lesions on that retina.
The good news in my life lately-I got a raise and a promotion at work so I must be doing something right! :)
I am not adjusting too well to life in Naples-the people are nothing like the people at home or even like the people in the Keys. It is just SNOBBY here and I do not fit in. Of course the stress from that is not helping the lupus at all. I am going to make a doctor appointment today and try to get this back under control. This disproves my theory that my lupus was geographical in nature. I really thought since I got sick at home (in West Virginia) that I would be better if I moved back to Florida and part of that logic is correct-I am not as swollen as I would be up north in the winter but I am not any better either............and going without my meds since July has not been a great idea either. :( I was reading a story about a lady with lupus who basically did the same things I have done as far as going off the meds and moving thinking that would fix it. The cold hard truth is-I CAN NOT FIX LUPUS-I can not make it go away and I can not will it away by ignoring it. I can tell the truth about it but I can not seem to remember the truth for long.... some fools never learn. :)
I hope to update more-it has been hard with working ten hour days and all-I hope everyone is well........take care.
Posted by Lisa at 02:11 AM | Comments (0)
October 10, 2005
Monday monday
I had a "perfect" sleep night planned. Do you ever do that? Plan for a good nights sleep? I have to as I do not ever sleep real well so I have to do things to help myself sleep. Last night I had fresh sheets (which always helps) total darkness (which always helps) a sleeping pill (which sometimes helps) and I was relaxed. I do not know what happened next. I could not get comfortable-my joints hurt, my bones felt like they hurt as well. I can not stand having to go back to work and not had any rest. I do not sleep like other people anymore. I used to in my LBL(life before lupus). I used to lay down and fall right asleep and stay there, now I toss and turn and can not get comfortable it is a nightmare. I am so tired all the time and I can not sleep well enough to feel better ever. My nails need done but I do not have the energy for trivial things anymore. I am lucky to take a shower and go to work. After that all bets are off :)
Have a great day all-namaste :)
Posted by Lisa at 03:57 AM | Comments (1)
August 03, 2005
Changes are a coming :)
Hi all-it has been a LONG time. I have been in the hospital with yet another flare, got out to find out I had lost my job, three days later my husband lost his, then we decided to move back to florida. So we are now in Naples, FL and it is beautiful here.
We just got here last thursday and on monday my husband found a job then yesterday I found one so now we need to accumulate some cash so we can find our own place, we are staying with his mom at her home. Sound a bit familiar? It will to regular readers who know in feb I had to stay at my fathers because of the flood. The worst part is they keep telling me stress triggers these flare-ups but I can not seem to get away from it..........it follows me like a lost puppy.
I start my new job today-seems like an easy-going enviroment so that should help, at least it wil eliminate the job-stress part.
I will update soon............
Namaste
Posted by Lisa at 04:01 AM | Comments (0)
June 09, 2005
I love Naples!
I am so in love with the area of Naples! It was so beautiful and clean looking. We went to the beach (me and sunscreen and cover ups and an umbrella) and all the way out all you could feel was sand under your feet-IT was fantastic! We all had a great time and we are all 100% certain that we want to move back to florida.
It was the most fun I have had in a long time-it was a hard trip but so worth it. It was nice to just forget about everything even if it was only for a short time.
Then had to come home go back to work and reality and that was not so great. I ended up in the hospital again and they said my thyroid had bottomed out? I am still confused on what that means but all I know is I was really sick. They also dx'd me with "unstable" angina. That was what sent me to the ER-I thought I was having a heart attack. Talk about scary and panicked feeling. Wow. Now I have to go have a stress test. I am thinking-I have alot of stress so it should be easy to pass a stress test-LOL.
Other than that not alot has been going on-the kids are out of school for the summer and my daughter turns 14 on tuesday-where does the time go? When I was younger I used to think I would never "grow up" now it seems like I can not slow time down. My kids it seems are appreciative of being young though, they seem to be in no hurry to grow up and be saddled with all the responsiblities that come with adulthood. I guess that is the difference in growing up in an abusive household versus an non-abusive household. I could not wait to grow up and get away from my parents-so it is reaffirming to me that my kids do not seem to be in a huge hurry to do so-must be doing something right :)
As a parent I guess you always second guess yourself, and I think you do more so when you have achronic illness simply because you wonder if you are cheating your kids out of "normalcy". But really when you think about it the definition of normal is pretty broad. What seems normal in one home is definitely abnormal in another.
Anyway heres hoping we all have a safe, healthy summer :)
Keep smiling and namaste :)
Posted by Lisa at 05:16 PM | Comments (0)
May 25, 2005
Going to florida no matter what!
Late last week my mother in law offered to pay for us to be able to come to florida for Memorial day weekend-this is also the 2nd anniversary of my father-in-laws passing. We are so excited and anxious to go even though it will only be for a weekend and we are driving it is about a 16 hour drive, my husband was afraid my health could not take it. But I told him I have been feeling fine for the most part and I WANT to go so bad.
This morning I woke up with joint pain and stiffness all over and a temp of 100.6. Now bear in mind for a normal person, that is not too high, most people with lupus however normal body temp is 97.7 so that is pretty high for me. I have not even let my husband touch me tonite because he will know I have a fever and then he will want to call the whole thing off!
My mother-in-law is not wanting to spend this anniversary alone and I am not going to let her no matter what! I am so aggravated at my body though right now and I know that is not realistic but sometimes living with a chronic illness your emotions are not realistic. I was hoping to get to feel great and show his mom how good I am doing and now I am scared. I have spent so much time tonite worrying about the fever. I have a dr appointment in the morning so I am going to ask for a dose of steroids to at least make me able to make the trip.
I know I have said before that I will never take them again but another lesson of lupus-never say never. Today at work my boss asked if I was ok because she said I am starting to not look so good again. I told her I was fine just up too late. I feel like such a fake! I am not fine but if I tell the truth I will not be able to go to florida and my employer will start treating me like I am disabled again after I am finally getting some respect back.
I HATE LUPUS, I HATE WHAT IT HAS DONE TO MY LIFE, MY FAMILY and all of the things my life used to be.
I am Buddhist and I can not figure out what life lesson I am supposed to learn from this. My dhamma instructor says patience and I say I have been and she said no you are supposed to learn patience. LOL Ok I have never been good at that so maybe she is right. But it is so hard and it is not fair. I am trying to get better and it seems the more I try the harder it gets.
Then a very well meaning friend starts telling me a gluten free diet will cure me, I have read this theory but I do not put alot of stock into it, but maybe I will try it and at least see if it helps. It can not hurt I guess.
Anyway I will not be updating until probaly Tuesday night after we return, everyone have a safe and healthy Memorial day weekend.
Keep smiling and namaste :)
Posted by Lisa at 06:53 PM | Comments (1)
May 04, 2005
I survived the interview!!
I think I did really well during my interview with BCBS. They seemed to like me and vice versa. They told me I would hear something within a week or two. That was yesterday. Today at work, my supervisor told me as of Monday I will be moving back upstairs with most of my old responsiblities back-now my co-worker who swore she was not trying to steal my job-who swore she was just trying to help out is pissed off about it. She even went so far as to go talk to the owner (my father) about it! And I think she told him about my interview! This is somone who was my friend for thirty years and now I can not stand her!!
Anyway-it is late and I am going to lay down-one of the things I have learned living with lupus is in order to have something resembling normalcy in my life I have to rest more than the average person. If I stay up until even 11 at night it is almost impossible for me to get out of bed in the mornings.
I will do a longer better update tommorow.
Keep smiling :)
Posted by Lisa at 06:39 PM | Comments (0)
May 03, 2005
Today is the day
Today at 2 is my interview with BCBS. I hope I get it. I ended up in a major arguement yesterday with my supervisor and a co-worker, who said they are not taking away responsibilities I had before they are trying to reduce the stress on me so as not to cause me to flare.
I said the right thing to do would have been talk to me and see what I thought I could handle first instead of treating my like I was incapable of anything. I explained that this has caused alot of hard felings on my part to the point that I am searching for other employment. Mt boss was very surprised. She said she had been trying to help me not hurt me. I told her she had helped me-helped me right out of the respect I had prior to leaving, helped me feel incompetent, helped me look incapable-I told her she had indeed helped me in alot of ways. That was not the type of help she meant but that is the type she has caused. I advised them yesterday that I will problay be turning in my notice sometime soon and she said they would not accept it. I told her they can not refuse it. This job I am interviewing for today is so much better with room for advancement and with no one knowing I have lupus. I will be treated just like everyone else and hopefully I can keep the flares at bay.
I know my life has to change and it has changed alot, but I also have to have something to hold onto to give me faith that it may not always be this bad. I do not know if that makes sense to anyone or not.
Anyhow-WISH ME LUCK today and I will update this evening if for no other reason than to say how the interview went.
Posted by Lisa at 04:13 AM | Comments (9)
May 01, 2005
Sunday evening coming down
Today is sunday. My husband went to take Sean back to Fairmont and I am studying for scool. This past week has been so hectic that I can not seem to get any time to study at all, so I have been trying to all dy today, but when you have brain fog-that is too hard trying to cram everything into one day.
Tuesday is the day for my job interview so I am really excited about that. Nervous but excited.
My son had a soccer game yesterday and his team lost but they did good so who could get too upset?
Except the coach-boy he has a big mouth-I wish I could yell that loud-LOL
It has been rainy and damp here for several days so I have been in pain and miserable to boot. I am just waiting for the weather to break and I hope against hope it is warm and not damp on the day of my interview.
Not alot to say about this weekend-it went too quick and my husband and I have gotten along fantastic so that is exciting for me.
He volunteered to take my sons friend home and to go to the grocery store and to make the trip to fairmont so I could stay home and catch up on my studying so that was really sweet and I appreciate it so much.
If I do not update later it will probaly be Tuesday after my interview efore I do.
Everyone please keep your fingers crossed for me-I WANT this job so badly.
Keep smiling :)
Posted by Lisa at 12:31 PM | Comments (0)
April 22, 2005
How many times can this happen
I am feeling so stiff and achy today and I am afraid to tell anyone for fear they will decide I am not capable of being here. I lied to my doctor for the first time and told her I was fine. I do not recommend anyone doing this, I do not know why I did it. I think I am getting to a point with the lupus and fibro that I simply want so badly to be normal again and I think through sheer force of will I can make it happen but I know that is not true.
I just wish I knew how to get past the anger and truly get to the acceptance. I do not want to be this person, I do not like this person and I can not handle living like this. There has to be a better way. My whole body aches to the point that no pain meds will touch it. Life is not supposed to be this way-dammit, I am only 36, I am supposed to have my whole life in front of me! If I sound bitter it is because right now I am.
I listen to my friends talk about their "problems" and I get jealous, I wish my problems were so simple. Gee how do I plant my rosebush? I hope to get done with my gardening to go shopping!!! I just hope to be able to get out of bed after working all week!! It is not their fault and I know that, I just do not know what to do with the anger that has been buidling up..........
Posted by Lisa at 09:34 AM | Comments (0)
April 19, 2005
I am so sick and tired of this place
I am supposed to be getting better, why do I feel weaker and weaker? I know it is my job. I have written my resignation letter three times and so far I keep throwing it away. I really hope I can turn it in soon.
One of the things I have not told anyone who reads this is the employer who is treating me so badly is my own father, that makes all that is going on seem like a double betrayal, I have no idea how to deal with this, I want to curl up and not ever get up!!
Posted by Lisa at 01:16 PM | Comments (1)
April 17, 2005
Sunday evening
I am so disappointed in my body and my power of will! I am hurting all over and was up and down all night last night with a fever again which is signaling a relapse. I do know my body well enough now after dealing with this for over a year to know that I am getting ready for a flare. I am equally certain that the stress from my job combined with the less that satsifactory way my first week back went is responsible for this.
I need to find a better way to deal with the stress without getting so angry and so upset. I know it is not a reflection of my abilities but rather my employer punishing me for being out, yet even armed with this knowledge, I can not stop from getting so upset, hurt and angry. This has to end.
Blue Cross and Blue Shield is hiring and I am going to go apply there this week. I know if I call my doctor she is going to pull me out of work again and I can not afford that at all. I really think my best bet is to find another job and steer clear of having to deal with my employer until I do find another job.
Any suggestions would be great..........
Posted by Lisa at 05:38 PM | Comments (0)
April 15, 2005
I hate my job!!
One of the things the rhuematologist as well as my regular doctor keeps trying to drill through my head is STRESS=PAIN with lupus. I am a type A personality and I thrive on responsibility, it makes me feel good to know that other people need me and rely on my expertise in my job and at home. Today has been a humiliating day for me at work since my supervisor has decided that my co-worker who is already doing everything in her power to make me look less than qualified is more capable of helping the new people and answering questions than I am! I am the only one here who took an 85 question test on the FDCPA and only missed one, I am the only one here with prior management experience and I am also the only one of my co-workers currently enrolled in college to increase my marketability. So I have reached a very important decision and that is to start seeking a job that will allow me to be me and afford me the opportunity to show what I am capable of. I would have thought after five years of service needing to take a medical leave of one and half months when it was supposed to be three months but I pushed to come back early would not have put me back this far at work but apparently you are only as good as the day before and the length of time here and the ability shown prior are irrelevant, so in order to preserve my sanity and my dignity I am going to have to change jobs. I do not want to do that however they are forcing my hand.
Some people are content being in one area their entire life and for their entire career, I am not like that. I need to be somewhere with the chance for advancement and this is not the place for me any longer.
Since this mornings episode-I am hurting mentally and physically. My joints are swelling in my hands and all of my physical symptoms are acting up. I know it is because of how emotionally upset I am over the treatment by my employer. I can not allow a job to bother me to this degree. I have other responsibilities and it would be wrong for me to allow this area to take over my life and cause me to wind up back in bed.
I am so hurt and angry that the five years I have been here have turned out to mean nothing-what a waste of my time!
One call to my doctor would get me back out on medical leave but I do not want to do that, I think I am just going to start looking for another job.
Any feedback from anyone especially fellow lupies who have had to deal with this would be wonderful.
Keep smiling-I know I am trying to.
Posted by Lisa at 08:41 AM | Comments (0)
April 13, 2005
Back and work and the Back-biting has begun
I have to say I would love my job if not for the people. As funny as that sounds, it is true. One of my co-workers (who would not have the job if not for me) and who has not nearly the amount of experience as I do-has decided to take over and I am beyond furious that it is being allowed. As far as I am concerned she should never have betrayed me like that and I will never forgive her. She struts around here like she is a boss or something and acts like she knows everything and she walks all over everyone! Several people called me while I was absent to complain about her and the way she is acting but they act like they like her to her face because they have heard the way she talks to people she does not like and they do not want to deal with that at all. It puts me in a rough spot though since we are or at least used to be close friends.
More later........
Posted by Lisa at 12:26 PM | Comments (0)
April 07, 2005
Back back back to work again :)
Went to my doc this morning and she has agreed to let me go back to work. I am excited to go back but also a little apprehensive since it has been a month and a half. Alot has changed over there while I have been out and there have been numerous problems within my department so it will be a switch from the quiet life I had been leading. My doc is not sure that I will be able to handle it but she wants to let me try since I have been bugging her for three weeks now to let me go back.
I can not remember if I updated that I went back to school but if I did then it is not news. I have taken 7 tests so far and scored between a 95 and 100% on each one so that is exciting for me.
My kids are adjusted wonderfully to living in a different area and different schools and things seem pretty good. It will be better once I get back to work as financially we should not be in as much of a bind as we have been lately.
Being off this long though, has given me alot of time to reflect on the direction of my life and where I want it to go versus where it is. I am no longer content with the status quo of my life and am working hard to change various aspects of it. One thing living with lupus has taught me is that stress is no good for anyone and even worse for people with an illness like lupus. Stress can trigger a flare quicker than any virus can. And I have to do whatever it takes to limit the amount of abnormal stress in my life. To that end I have made a decision that I never thought I would make and that is if there are not some serious changes at my job I will start looking elsewhere for employment. I have been at my current postion for five years and I am not the type to get angry because I do not get my way and quit a job but there is a difference between not getting my way and being walked on. There is nothing wrong with standing up for myself as long as I do not step on anyone in the process.
I am going to have to go back to the doc at the Cleveland Clinic but I am ok with that since he is such a wonderful doctor.
Most of the decisions I have reached during my time off are work-related and I am excited to go back and put them into action. I do feel very optimistic about making these changes to my business life and hope that the outcome is the way I envision it to be.
Keep smiling :)
Posted by Lisa at 09:56 AM | Comments (0)
