Tuesday

Tuesday is my appointment day.  I have my questions ready.

Yes, some of this is my fault, for not asking the right questions, for not figuring out the right eating patterns with steroids.

At the same time, I need help. I need more information, I need my balance back, I need not to feel like I need 16 hours of sleep a day. I would love to walk more if I had my energy back. I walk at work, but it could be more. So tired.

So tired - in more ways than one. I could use emotional help too, but with all I already pay for the RA, I fear it is out of the question.

Double edged sword, anyone?
RAmbling Girl

I've decided

To ask about discontinuing the steroids and demand an evaluation of my side effects.

The excuse I was given for the steroids was to mitigate the pain away long enough to give the newer drugs I am on time to work.

The steroids have messed with me so bad both physically and stigma wise, that I have gained all of the weight back that I have lost.  I have tried repeatedly to wrap my mind around proper eating patterns with this drug, but nothing is working. I'd rather have the pain back (if there is any to come back) and let the other RA drugs stand on their own merit.

Meanwhile, another thing that is probably not helping my eating habits any - my near constant diarrhea. It's happening 90% of the time now, and it leaves me feeling weak. I NEVER had it this bad before I started this last round of drugs.

My appointment is in the 2nd week of August. I shall do my best to keep it together.

The fight continues,
RAmbling Girl

Meh

There is a picture on my desk at my job. It is of me at a murder mystery dinner theatre show. It is a time where I was happy.

It has been a long time since I blogged here. In short, the reason why is because of illness, day job, switching drugs, and idiotic online pharmacies who wouldn’t know their way around paperwork if it came up and bit them.

Let me make something clear: I am no warrior. I am just a woman who is dealing with rheumatoid disease, the pain, the meds, and the side effects from the meds.

Ah yes, the lovely side effects: weight gain, recurring illness, breathing issues, diarrhea, loss of energy.

It makes finding more to live for in life kind of a drag, really.

Don’t get me wrong, I went into this thinking I would find a regiment that would keep the RA under control. It seems easy enough – I mean thanks to an eye doctor I have a regiment that is so far keeping my eyes in check and hopefully away from recurring eye infections.

It has been a little over two years now, and not much progress. The new drug I recently started I have not even been monitored on yet due to illness, and I have been on this drug now for four months.

This post needed to come out, because it was hurting me keeping it in.

I’ll keep on of course, because what else is there? Meanwhile I think I will go have a good cry and break something, because it has been a long time since I have been happy. Hope? Don’t even get me started.

Meh,
RAmbling Girl

What Rheumatoid Disease/arthritis means to me

In honor of the upcoming Rheumatoid Awareness day (On Groundhog day no less, please check out rheum4us.org for more details), I thought I would elaborate on this elusive foe that basically sidelined me for near the end of last year (I was sick in October and November, which led into some very busy holidays for me which meant little time writing - that's why things dropped off here.)

What Rheumatoid Disease/arthritis means to me

So, I have officially been on this journey for a year now. In short: it sucks.

Thank you for coming by and have a nice day.

Um, what? You want an explanation? Oh all right, I'll explain.



Imagine entering a carnival.

You are intent on having a good time and experiencing all there is to experience. Suddenly one of the carnival workers comes up behind you, forcibly routing you to a particular ride. You have no choice in the matter, so you board the ride.

It is the most miserable ride you've ever experienced - you're sick, feeling topsy-turvy, and you would do anything to get off the ride, but when that current ride ends and you step back on good ol' terra firma, yet another carnival worker wants to route you to another ride, this one twice as bad as the first. Reluctantly you get prodded along, dreading what is coming up next.

Okay, the above may be an oversimplification but for the basics of it, it is true. Your body's defenses (aka immune system) are doing the unthinkable - attacking your joints and your organs. I mean the immune system is supposed to be the hero of this picture, keeping you from major sickness and all, but in a surprise plot twist the immune system is the villain of the piece, leaving you with inflamed and painful joints. There is currently no cure for it, and as far as treatment is concerned it is far from one size fits all.

There are numerous drugs out there meant to treat this disease, each with their unique way of tackling it. Most tackle it the hard way by suppressing your immune system, which means that the whole of the germing world of germs is ready to come at you.

My track record? I have been on three different combinations of RA drugs so far. Some have held things at bay enough for me to function at a basic level, but none of them have been effective enough to keep my RA levels down to my or my rheumatologist's satisfaction. I'm currently awaiting insurance approval to see what drug I am going to try next.

I'm now to the part of the carnival where the games are and am standing in front of the wheel of fortune. Its spinning and spinning and I am waiting for the payoff. The waiting is the hard part, really. Of course I am doing what I can in the meanwhile, keeping my diet low key since the steroids I am currently on are throwing my blood sugar to crazy levels, along with walking whenever I can.

Those crazy carnival workers are behind me though, ready to drag me back on their rides.

It has been a tiring journey and the emotions have taken a roller coaster ride. Some days there doesn't seem to be any hope and I feel doomed to pain, sickness, and inflammation. It is then that I remember that I have a good rheumatologist working for me and answering my questions to keep me in the know. I am also still quite mobile, even if there are some days I need to walk with a cane.

Okay, so the journey doesn't always suck. Life goes on and I continue the fight - THAT'S what Rheumatoid Disease/arthritis means to me.



Some revelation, huh?

Till next time,
RAmbling Girl


Edited to add: RA Warrior is organizing a blog carnival to show the many faces and aspects of Rheumatoid Disease and the effort to bring forth awareness. If my experiences can help people understand, then I am more than happy to share them.
http://rawarrior.com/what-would-rheumatoid-awareness-mean-to-you/

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

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

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