Saturday, September 28, 2013

Angry rant #367.2

NOTE: When angry rants show up here, it means my anger has reared it's ugly head and will not shut up until I get it out - there is your warning.  Some may call these type of rants 'pity party rants,' but I counter that I figure out things better this way, even if they are making me angry.  So, in short, this is an angry rant. Not your cup of tea? Scroll down to another entry or go to another page.

Patience is a virtue, I know, but sometimes I wonder what I am fighting for? Days upon days of pain while doctors figure out the right drug cocktail for me? I can't turn to food, as much as I am tempted to. My frustration - My anger, I am two weeks and some odd days off of steroids and thought things would be better, my appetite would snap  properly back into focus and I can be happy again -

Only to find that my lower legs are swelling painfully now for the past few weeks.  I'm nowhere near as heavy as I was, but even when I was at this weight before I never swelled this bad - doc is running tests and I am scared - what if I need surgery? More money down the drain.

I've cried three times today - make that four, damnit.

In other news, a personal victory. After the goading of my mom, I finally went and had my hair cut and styled.  I had about given up on it, and some even mentioned buying a wig, but I came out of it with a decent style.  I also have been taking a vitamin b supplement called Biotin - it hasn't stopped the Methotrexate related hair loss, but it has slowed it down.

Pam go SMASH,

RAmbling Girl

Tuesday, September 10, 2013

Expectations or damnit I want it now!

I have unrealistic expectations - I freely admit it, and it has been hard working with them to get them realistic.

Well, consider - when it was just osteoarthritis, I was prescribed medicine that had an almost immediate effect. For two years, I managed things until the recent flare-ups that tipped my doctors off to the RA.

I am now close to a year in my current treatment for RA, and so far my levels have remained elevated and not to my doc's (nor my) satisfaction.  So far I have been through Methotrexate and Enbrel. 

It's far from perfect. 

Granted, I am walking and writing, but I have dull aches.  Everywhere.

It's not on a major owwie scale, but it is enough to tire me.  I take more naps than I am used to - not helpful when you are trying to lose the thirty pounds you've gained during your stint on Prednisone.

Which is about the only recent good news I've received - my doc has officially taken me off of the steroids - yea?  The damage is done, my appetite is screwed and the weight is on.

I miss the days of simple and immediate effects.  I know I have a road to travel to get this RA managed - I just wish it was now.

Impatiently patient,

RAmbling Girl

Sunday, September 1, 2013

Prednisone - My enemy, My ally

Flashing back to when my doctor first stated that he suspected that I had rheumatoid arthritis, I was feeling a little vindicated and sad at the same time.  For close to a year, I was losing weight, feeling better, and the drug he was giving me for what we thought then was just osteoarthritis were working.

The flare that brought me back to him was intense – I ended up digging out the cane I thought I wouldn’t need again for a long while.  The best appointment he could get me for a rheumatologist? It was seven months out!  (Not a lot of rheumatologists in my area, and since my insurance company was helping me out and the resulting fatigue was kicking me squarely in the arse, I didn’t question it or have the urge to look elsewhere)

I was miserable right then, I argued.  Can you give me something to tide me over until my rheumatologist appointment?

Enter Prednisone.

A steroid, enough to take the inflammation away – I was thankful and hopeful. At 269 pounds, I was hoping to continue my weight loss and be well prepared for rheumatologist appointment.

But then as he was writing up the prescription, he said the first words that have seemed to seal my fate: you will gain weight with this drug.

What? Surely it would be a temporary thing, and I will be off of it when I get what I need from the rheumatologist – or at least that’s what I thought.

But as I started on it, I began to hear some of the same things from the people in my weight watcher meeting and around me: Prednisone will make you gain weight.

But I was feeling good! I could walk! I went on vacation with my parents and I rarely needed my cane.  But what I didn’t pay attention to was that my appetite was out of whack along with a few other things.  I was having such grand success with weight watchers that I was tracking my eating in my head and everything.

That was my downfall – Once I was with my rheumatologist, he told me that I could not quit this steroid quite yet – I had to be ‘weaned’ off of it. 

Fast forward to now.  I am 305lbs, depressed, and angry. I wonder truly if it was the steroid or was it the people who kept telling me that this steroid could do this.  Regardless, I have come to the end of my chapter with the steroid – I am now out of it and currently relying on the methotrexate and Enbrel that I have been prescribed. The last intention of my rheumatologist was that this was to be the last of it.

So far I am feeling a little tender everywhere, and hoping that he will not put me back on it. Now that drug influence is gone, it is time to get my mind back on track – I hope.

Too much on my mind,
RAmbling Girl