Never felt so alone

Rheumatoid Arthritis
#1

I never felt so alone with so many around me before. 

I've been through a lot this past year and a half. I've kept my chin up, but in many cases all I did was making those around me miserable. First my husband and I tested positive as carriers for Tay-Sachs when I was 4 months pregnant. I figured, what was the point of testing the baby, I couldn't have an abortion.

Then as this was my 2nd pregnancy after giving birth 5 weeks early, I was on bedrest after going into labor at 29 1/2 weeks. Well, all that worked out great, and my little girl does not have Tay-Sachs and once I was off the meds and bedrest she came a week later.

Granted, she came so fast that she was born outside on my back deck after soon after my water broke at 11:30pm. Her offical time of birth is 11:53, but I'm sure she was born around 11:45ish :)

Then, I had to deal with my workplace that could have cared less about my situation, and all when I did go back, it was only into stress. I ignored the massive pain in my neck and shoulders for about 2 months.

For at least a month I'd take 3 tylenol and 3 motrin. I figured the pain in my feet was because my lazy *beep* couldn't loose the weight after I gave birth. It was the extreme exhaustion that really worried me.

Suprisingly enough, the pain was horrible, but I worked through it. But being tired all the time regardless of how much sleep I got... well... that REALLY worried me. Then I read an articule in BabyTalk about postpartum thyroiditis. I went to my doctor soon after thinking that was IT!! This is the reason.

A month later and several viles of blood and x-rays later my new doctors tells me... Yes, Mrs. Onyx Rose, it is RA. You should quit breastfeeding and take theses drugs. No... you don't want to stop breastfeeding? Well, how long will you breastfeed for? I tell the doctor I breastfeed my son for 22months and he weaned himself. I wanted to give the same opportunity to my daughter, but I'd at least give her a year if I had to wean early.

So, now I'm on Predisone. 10ml.. I'm trying to take less slowly. I just read that I don't have to wean, so I'll bring him the LLLI article to him during my next appointment. But I don't want to be on ANY drugs. Websites about RA only seem to push meds. Its so hard talking to my family beacuse its either, I just have arthritis and take a pill, or I have RA too.

To that person I say, when where you tested. The response, I don't have to be tested to know I have RA like you do. My response, so how do you know you don't have Cancer. There response, Oh COURSE I don't have Cancer. My response. Cancer and RA are a diease, if you can self diagnose one, why not the other. That person shut her mouth really quick after that.

So why am I here? To learn. I need to know what to expect. I need to know if getting back into Yoga 6 days a week, dropping 40lbs, and eating heathily is better then 3 or 4 bottles of pills a month over the next 30 years. Since I'm only 31 years old, the thought of that scares the hell out of me.  I'm hear being I'm tired of feeling so alone.

Thank you for taking the time to read this. 

 

#2

Onyx Rose wrote: A month later and several viles of blood and
x-rays later my new doctors tells me… Yes, Mrs. Onyx Rose, it is RA.
So, now I’m on Predisone. 10ml… I’m trying to take less slowly. I
just read that I don’t have to wean, so I’ll bring him the LLLI article to
him during my next appointment. But I don’t want to be on ANY drugs.

Ardeith writes: Well, do you want to know some of the things that can
happen to your joints if you don’t get the RA under control as soon as
possible? My mother had it beginning in the 1950’s when the drugs we use
today didn’t even exist. She had both knee joints replaced, both hip
joints, surgery on her hands so that she could bend her fingers, surgery on
her feet so that the toes that stuck straight up could be
straightened…her fingers eventually drew so far to the outside of her
hands that her hands were practically useless by the time she died at 78.
She also had bone cancer the last three or four years…

I was diagnosed in 1972, when I was 29…and was on prednisone for a number
of years…and a bunch of other stuff…I was on the drug studies before
Celebrex was released for prescription use, and am on Embrel now. I didn’t
suffer the damage my mother did because I could take the drugs she never had
the chance to take…and she didn’t tolerate even Naproxen …even with
the drugs I could take, both my wrists are frozen, both ankles, my elbows
are partially frozen, and I have a lot of fingers that won’t bend correctly
if at all. My Rheumy says I have a degenerative form of arthritis in my
spine which he can do nothing about, either.

Onyx Rose wrote: So why am I here? To learn. I need to know what to expect.
I need to know if getting back into Yoga 6 days a week, dropping 40lbs, and
eating heathily is better then 3 or 4 bottles of pills a month over the next
30 years. Since I’m only 31 years old, the thought of that scares the hell
out of me. I’m hear being I’m tired of feeling so alone.

Ardeith writes: Dropping weight is always good, and the gentle stretching
of yoga could help you keep your flexibility for a longer time…and
eating healthy is also always good…but none of that is going to stop RA
from destroying your joints. If no one has told you that yet, it’s time
someone did. The researchers are now saying that RA is an auto-immune
disorder…your immune system turns on your body and destroys the fluid
and other stuff in joints. RA can, over time, affect every organ in your
body, too. It’s not going away, it’s dreadfully destructive…but it can
go into remission which can last a few months, or in some cases a few
years…but there is no cure, and very little hope of preventing the
damage without the drugs…

I was only 30, and was nursing a baby about six months old when I was
diagnosed. She got weaned pretty fast, as I didn’t want her to imbibe the
drugs I was taking…I figured it was better she got weaned and had a
mommy who was more or less functional that be nursed for another year or
so…besides, she was biting!
When my hands flared, I couldn’t even lift her…my husband lowered the
crib so my six year old son could pick her up for me!

I’m 64 now, and I’ve been taking one med or another for RA for 34
years…I think I’m reasonably functional as far as it goes…my back
causes me more problems than the RA lately…but I’ve seen my
children grow up and have children of their own, and I make things like
blankets and such for my grandchildren to have to remember me when I’m gone.
I still manage to crochet and embroider, even if I can’t run a marathon.

You are not alone…lots of us out here who’ve been where you are, and
we’ve managed to survive and stay reasonably functional. We’ll help with
advice if we can, and offer a virtual shoulder to cry on if you need
it…and you will need it.
There’s nothing quite so devastating as looking at your own body and knowing
that it will never again be as good as it is right now. And that’s still
true, even for me.

Sit down and make a list of the things you can look forward to doing with
your children…despite the RA. You can still read to them, make cookies
with them, plant a tulip with them, lie in the grass and watch the ants
carry off bread crumbs with them…my children have said they treasure
those memories…so go make some memories with your children as they
grow…
Ardy

#3

My dear, I wish I could give you a BIG hug ~ and assure you things will be okay ~ YOUR NOT ALONE, trust me ~ the feelings you have we have all had ~ some take longer to get over the shock of being told “You have RA”.

Know you are NOT alone ~ I wish that they would find out what is behind RA ~ what causes it ~ I can be in a crowd and pick out others that have it ~ many have signs on their hands ~ the devastating destruction ~ left untreated ~ will only get worse.

I am so thankful that I am on meds ~ and living my life ~ once again after 2 years struggling to get on a right path ~ My xrays are clean ~ no destruction ~ I never took as much as an aspirin ~ now ~ I have a medicine box that I have to dig in daily ~

I am also thankful to have a place to come and meet others ~ and help them through this terrible disease. ~ I am also thankful that I dont have to undergo Gold shots as they did years ago ~ oh my ~ I would do anything NOT to undergo those.

If there is anything I can do ~ know I am here ~ and dont hesitate to ask questions ~ we all learn from each others experience.

Love, MaggieMae1959

#4

You’re not alone. We’re all here. I’m just walking it out too and depend on a Higher Power for strength and comfort – for me that’s God. I know that this suffering is momentary and daily remind myself that it is not purposeless even if I don’t understand why right now. Maybe just so we can appreciate the good days even more and comfort each other inbetween. Hang in there and know that we’re here to laugh and cry with you when you need it. We just take turns lifting each other up - I’m sending a big hug (did you feel it!) lol Cynthia