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View Full Version : Having a "why me" moment



the wingless one
06-04-2010, 11:13 AM
On days like today I am even more grateful that this forum exists, because really, where else can people like us turn? It's sad to say, but no one, even the ones who love us the most and try to understand where we are coming from, really *gets* it the way other people who suffer with our disease do...

I've had so much going on in my life recently and all the while my rheumy has been tapering me off Cellcept which has sort of been the *main* drug keeping my lupus under control (I have SLE with kidney involvement). I've mentioned this in a few other threads, but basically my hubby and I would like to start a family soon so definitely have to be off Cellcept and my high bp meds before that can happen. I have been tapering Cellcept for almost a year now and down to the last step (250mg) but I think my body has decided that that's it.

For the last few months my numbers (blood & urine) have been heading in the wrong direction, though my rheumy & nephrologist decided to let me continue tapering since it was not drastic. These past six weeks since my last blood test though my bp has shot up (when I'm "healthy" it's usually 100-90/60-70 but lately it's been more like 100-135/80-100) so I'm feeling pretty hopeless about this next blood test I'm supposed to take in two weeks. This past week I started having pretty bad arthritis again, in my hands, my knees & feet, and my back (which I rarely get, only when things are REALLY bad).

I took this week off work because I have a HUGE test tomorrow, a test that is only given once a year (CFA level 2) and I have not been able to do any studying all week because I've been feeling nauseated and exhausted. I'm not even sure what the nausea is all about because that has never really been a symptom for me before...has anyone had nausea from the lupus itself? My understanding was that it's usually a side effect from medication but that doesn't make sense to me since I'm on the same meds I've been on for years and I've been cutting down on the Cellcept. Gotta love how this disease always keeps you guessing right. Sigh.

And then this morning I woke up with a fever. Nothing too bad where I think I need to go to the hospital (100 degrees) but I hate questioning, is this lupus or am I just sick? My right ear is aching like crazy and I feel really congested so I'm leaning towards it being an ear infection or something, but ugh! I have to take a six-hour test tomorrow and I wake up this morning aching all over and now with a FEVER?? REALLY?? And my hands are feeling so arthritic I don't even know how I'm going to spend six hours filling out a scantron tomorrow.

Sorry to be such a downer, I normally try to stay positive and count my blessings, but today I just feel like...why me...why do I have this disease. Why can't I be young and carefree like other people my age instead of feeling like a geriatric patient? I honestly don't know how I'm going to get through tomorrow and I just feel like complete crap...

I hate this feeling, I hate feeling sorry for myself, but I just can't help but wallow today. Any tips for getting through days like this?

Nonna
06-05-2010, 06:21 AM
Since I posted a similar thread the other day, I can only tell you that we need to keep looking forward. Taking the bad with the good. Knowing that on this site we are not alone.

((((((((HUGS))))))))))

nonna

debbie-b
06-05-2010, 07:32 PM
Hi wingless,

Don't worry, I do get those, " WHY ME" moments, ones in a while.
It is normal, because we have these never ending bad days, we sometimes feel sorry for ourselves.
Did you have your tests done? Let us know how you did.

Debbie

LAP717
06-06-2010, 06:45 AM
(((( Hugs )))) I only wish there was something I could say to make any of it better.
Except that we all know how you feel.

Bonita
06-06-2010, 11:33 AM
This is why we are here to lend and ear and send our hugs till things are better. Thank God for these people on this site. Love Bonita

DrinkofWtr
06-07-2010, 05:04 PM
Perhaps your instructor would let you take the test another day. I believe you would fall under the Americans With Disabilities Act and could have special considerations made for testing, etc. I may be wrong on this. Does anyone out there know if what I am saying is true?

SandyR
06-08-2010, 06:55 AM
I don't think you sound like a whiner. I think you sound like someone who is chronically ill and experiencing what might be a flare. The fact that you are so strong you keep going forward through great pains and obvious sacrifice to reach your goal is proof to me that you aren't a whiner. (((hugs))) I hope you can find some way to lower your stress a little but with the school test and meds step down and the pressure you probably have on yourself to get healthy enough to try for a family, it is no great wonder your body is feeling all that and showing it. DOW might have a point - I am guessing you are in college? - if so and your medical record is on file with them, you should be able to ask the professor to help you modify the test due to your situation. Perhaps you can take the test before the rest of the class one on one with the professor and they can fill in your scantron answers for you? As I like to say - it never hurts to ask.
Sandy

the wingless one
06-10-2010, 05:26 PM
Thanks everyone!! This is why I really love this place...I don't know what I'd do if I couldn't get this stuff off my chest somewhere where I know people will understand. You guys are the best =)

I went ahead and took the test and I'm pretty sure I failed it horribly, but it's okay, I can take it again next year. Luckily it's not for school, I work in the financial industry and it's sort of like a professional certification test which is why they only give it once a year (everyone in the whole world literally takes it on the same date). There are three levels and when I took the first one I had swine flu, so I've just been getting unlucky!

My flare seems to have calmed down a lot and my joints feel decent, but now my bp is up again. Ah! I can't win.

Anyway, thanks again everyone, your replies really made my day =)