Main » February 2006
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 4:15 PM
February 20, 2006
Ugh....I hate mondays!
Used to be I would bounce out of bed ready to start the day, now I don't. I used to wake my kids up by singing (what an annoying mother-lol) now I don't. So many changes in my life and I do not even realize how much my life has changed until I stop and think about it-too much!
I want to learn how to live happy with this illness. I wish I could just wave a wand and feel better about it, but there are no fairy godmothers and no magic wands so I am going to have to find it in myself to not let this get me down. I am too sensitive for my own good sometimes and that does not help. I do not think why me though, I think why not me, others have it alot worse than I do and they manage to cope and stay sane. I envy people who can rise to every challenge life hands them, maybe one day I too will be able to do that? At least it is a great goal to have.
Namaste
Posted by Lisa at 2:19 AM
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
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 9:30 AM
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 7:14 AM
February 9, 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 4:55 PM
February 6, 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 3:18 PM | Comments (2)
February 4, 2006
How much blood does our body hold? LOL
Yesterday I had to have 30 tubes of blood taken!! I could not believe it. It took two employees and two needles going to take that much blood. My arm is still sore today :( But at least this rhuemy wants to find out step by step what is going on with me so that is good.
I am going through the prednisone withdrawl which is awful no matter how many times on it-it seems so hard to wean down-fever goes back up, mood disturbances are rampant, and I feel like crap.
Not a lot to update today as far as how I am feeling or anything-feeling pretty yucky and swollen, and feeling a little tense over the blood work-up but otherwise ok..................
Posted by Lisa at 7:20 AM | Comments (1)
February 1, 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 2:00 AM | Comments (1)
