R.A. The True Endurance Test – Questionnaire

8 12 2007

It’s so gray and cloudy outside. It matches my insides. I’m tired and want to sleep for 5 days. I want to cry about nothing. I want to experience a different emotion besides pain. My hands are bound in compresses and they feel better. I rest my eyes for a minute, careful, don’t fall alseep. I’m sad for the body I wish I had. I’m sad that pain is such a big part of my life. This is beyond suffering. My brother who’s schizophrenic once said I’d never wish this on my worst enemy. I feel the same. He has gout and has suffered so much. RA is the true endurance test. I’ve got these great new hand glove/compresses. I’m not sure why but they really help. Last night I couldn’t sleep. It was a mix between pain, insomnia, depression, and anxiety. It’s cold outside tonight and the wind is ripping through my now oversized shirt. It hardly fits me anymore.

I don’t ever want to complain about any of this. i want to be the picture-perfect photo of joy for all of this. I want to only have a blog of inspiration rather than any bitching and moaning. I want to read my new favorite book “A Life Less Convenient” again. (New book re-issue comes out early 2008)

I want to climb into bed with Jax rather than be here on a work break. I could sleep for a month and I might actually feel better. But I cant, because I’m meant to be filing about 20 health insurance grievances over the weekend. I hate doing the paperwork but it’s worth thousands of dollars. It has to be done. Also, I have work – too much work – I did get 2 clients for next week. That means solid work until christmas week. I’m grateful. I’ve got a zillion things that need to be done, but at least I’m making money to put food on the table and pay for the numerous medical bills.

Questionnaire:

Many of the visitors to this site have RA (rheumatoid arthritis) just like I do. I was wondering how normal I was comparatively. I wonder if my long entries drive people crazy. (it’s ok to comment yes).

1. do you have swollen legs, ankles, feet and have a hard time getting in shoes?
2. do you find you’re too tired to think about wanting to have sex?
3. does your partner refer to themselves as a caretaker?
4. do you get distracted while working and realize how bad your body aches?
5. do you try to eat healthy but realize nothing makes you feel better?
6. does your doc drive you crazy and tell you that you’ve gotten fat after a hefty dose of prednisone?
7. Do you feel like throwing up most of the time?
8. Are you taking Prednisone and does it make you want to die?

If yes:
a. Do you have Prednisone weight gain that makes you miserable
b. Does Prednisone make you dizzy, give double chin, moon face, and a variety of other woes? Note: Visit my links page where I’ve added a few for Prednisone. Also, I’ve got loads of Prednisone blogs in the Medications section or visit the Timeline to check out the ones that interest you.

9. do you take Embrel?
10. do you take methotrexate?
11. what’s the difference between R.A. & Lupus when my R.A. has caused multiple organs-gone-bad?
12. Is there a website out there that has really made you feel better?
13. Do you have a blog or website you’d like to share with others on this subject?
14. Do you live with a mate (boyfriend, girlfriend, spouse?)
15. Are you the caretaker or the person with the disease?
16. Do you realize life is short and get off your bum and stop complaining and just get on with it and stop the pity party and LIVE!
17. Is this an everyday decision?
18. Do you own your own company and have a job you love?

That’s it for now – let’s see how people respond.
Sasha

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4 responses

7 08 2008
linda

Sasha – your entries are so enlightening, please don’t cut or filter a thing! 🙂 here are my responses to your questions (“normal” may not exactly be my representation):

1. do you have swollen legs, ankles, feet and have a hard time getting in shoes?
yes, although it didn’t even occur to me that my “fat” feet were from RA until i started methotrexate 2 years ago. My shoe size has gone down a whole size!

2. do you find you’re too tired to think about wanting to have sex?
yes, but i totally understand that my case is often stress-related.

3. does your partner refer to themselves as a caretaker?
no partner – i still grapple with the self-defeating thought of not being worthy of being someone’s partner. i project into the long-term and think of what i will be like at 50, 60, etc. (i’m currently 26) and how i’ll have to be taken care of.

4. do you get distracted while working and realize how bad your body aches?
yes – sometimes it’s hard to portray to otherwise healthy people how holistically tiring RA is; physically, mentally, emotionally…

i recently started a new job and am trying to figure out if i want to dump my diagnosis on them. i mean they’re probably going to wonder why i’m ducking out every two months to go to the doctor – but i don’t want sympathy. in fact, i don’t do well with sympathy. i just want understanding.

5. do you try to eat healthy but realize nothing makes you feel better?
yes – so i figure i might as well enjoy what i’m having and go for that slice of cheesecake or order that side of fries 😉 my junk food binges don’t seem to make me feel WORSE, so i roll with it.

6. does your doc drive you crazy and tell you that you’ve gotten fat after a hefty dose of prednisone?
i was only on it for about 4 months, but i definitely gained TEN pounds while on it! I’m only 5’4″ and my weight has been pretty stable since high school, so the 10 pounds was a shock. luckily none of my doctors mentioned my weight gain…

7. Do you feel like throwing up most of the time?
yes! you know, i thought that was just my body reacting to stress and meds, but it seems to be a pretty common thing

8. Are you taking Prednisone and does it make you want to die?
not anymore. now i’m on methotrexate with the possibility of switching to enbrel

9. do you take Embrel?
not yet….but maybe soon

10. do you take methotrexate?
yes

11. what’s the difference between R.A. & Lupus when my R.A. has caused multiple organs-gone-bad?

12. Is there a website out there that has really made you feel better?
your website has helped a lot, actually. just seeing that someone has a common experience has made me feel less “crazy.” perhaps that wasn’t so helpful in terms of pointing out useful sites for you, but your site gives me something to look forward to.

13. Do you have a blog or website you’d like to share with others on this subject?
no – i do blog, but i don’t keep up an RA blog. I should, though.

14. Do you live with a mate (boyfriend, girlfriend, spouse?)
no

15. Are you the caretaker or the person with the disease?
the person with the disease.

16. Do you realize life is short and get off your bum and stop complaining and just get on with it and stop the pity party and LIVE!
yes, but there are days where i just want to sit in a lump and wallow. but those days are rare 🙂

17. Is this an everyday decision?
every day, every minute, every second.

18. Do you own your own company and have a job you love?
i love my job, but it’s not somewhere i see myself working until i retire.

take care,
linda 🙂

26 02 2008
Laura

A couple of notes that may help –
Constipation: Magnesium comes in 200 or 250 mg tablets. It’s cheap. I take one every morning and one every night, and constipation is now history.
Pain meds: For me, with nerve pain, essential.
Prednisone: Can’t live without it, hard to live with it. Just went back on it after foolishly going off. I can manage on 2.5 mg most days. I understand that you greatly reduce the bad effects if you can get your dosage at 4.0 or less.
Swollen everything: Went from shoe size 8 to 11 before dx. Now wear 9.5, and orthotics, thanks to RA, as it destroyed the little ligaments and tendons in my feet and flattened them. Need compression on my feet all the time to walk, on my hands quite often.
Work: Almost killed me. Tried to stay, had a dearly held dream that was very hard to give up. Denial, exhaustion, pushing your limits, are all VERY bad for you of you have autoimmune disorder(s). Don’t work anymore, disabled due to RA + pancreatitis + autoimmune thyroid + migraine + fibromyalgia . . . yada yada yada, autoimmunity.
Diagnostic questions: RA or Lupus? I’ve been dx’d with both by different docs at different times. Don’t know the answer, or if it makes that much difference if the treatments are the same categories. (I also had my gallbladder and appendix out, and have had idiopathic hepatitis – read autoimmune)
Attitude: This is THE most important work I do every day. For me and most especially for my husband. And it IS work. Takes being careful not to complain too much, but to also be honest. And positive, and warm and loving. Lots of care in how you say things. Caretakers are such sensitive souls, and so worried about us, it’s easy for us to hurt them and they’re already so hurt and as damaged by our illness as we are.
Enough for now. Hope this is helpful.

16 12 2007
typeawithra

Dear Tonya, I’m bummed to hear that you just found out about RA diagnosis. I’m even more sorry to hear about your lack of health insurance. that would be a truly horrific situation. i urge you to find a way to get insurance (or at least emergency situations). Not sure where you live but i do know of a health insurance broker in california (they are free since health ins. comp. pays them for referring clients). emergency insurance is not that bad at all and so vital.

Now to answer your questions. My Dr’s don’t give pain meds for RA (I think most dont as a general rule of thumb although i could be wrong). I do take pain meds for chronic pancreatitis and have a pain pump (info at https://typeawithra.wordpress.com/2007/12/06/me-and-my-pump-2/). it is true about the wheelchair. i would be in a wheelchair right now (35) if it wasn’t for the methotrexate and prednisone. I had lost the ability to walk right before i was diagnosed about 2-3 days of the week. The meds will prevent this from happening so early or at all according to almost all of the Dr’s, books, and websites. This is because the past 10 yrs. has seen a ton of success in the advancement of medication for RA.

I hope this is helpful. Feel free to ask more questions.

Oh – last thing, the pain meds would not really have helped much with RA because my issue wouldn’t have been solved with them. My bones were/are breaking down and cause severe inflammation which caused massive swelling. The pain meds can’t fix that issue.

Another issue with the pain meds is that they cause horrific constipation and a bit of memory loss. the constipation is life stopping and a massive reason i got a pain pump. when i say constipation – i mean my intestines were “frozen” and I was being poisoned by my own poop. It’s so gross.

Essentially, pain meds are pandora’s box and it is better to not go down that road.

15 12 2007
Tonya

I have just been told about two weeks ago that I have serve r.a. I am 26. All the study’s I have read are done on people 40-50. The doctor told me that I will be lucky to walk at 50. I have to answer yes to alot of your quetions. I’m not on medication for the r.a. at this point cause the doc wants me to go to a specailist. I don’t have health insurance so I’m trying to get it a.s.ap. However, I have been on pain meds for years. Do you take pain meds? If so, what do you take?
Does it help you?

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