Chemo Effing Therapy

03.20.12

It was a long day with the doctor yesterday. Everything is okay, but it’s not good. Good being “remission”. My hands are swollen, my hips ache and I can’t walk well the first hour of the morning. Maybe that’s not actually okay?

I’m not a good patient. I am not good at taking pills… recreationally who isn’t but this whole thing of two pills on an empty stomach isn’t working very well. I never have an empty stomach and I don’t want to wait an hour for breakfast. But I try to wait that hour for breakfast because they tell me it will make me feel better. Then I have a pill that I take two of on even days and one on odds. I take that with food. The food part is easy. I am always eating. Of course there’s the monthly injection. Even though it doesn’t hurt much anymore it’s the most depressing part of it all. I hate that injection and I hate seeing the syringes in my refrigerator. I’ve considered buying a small refrigerator just so I don’t have to look at the medicine every time I eat (which as you might imagine is often).

My hands are still in bad shape. I’m going to see an acupuncturist tomorrow for some short term relief because I really need to avoid the prednisone and I’m tired of celebrex upsetting my stomach.

The doctor wants to add back methotrexate which I’ve taken before and not liked. With “not liked” being a massive understatement. Part of what worries me about methotrexate is the liver damage. I don’t want to live with RA but I can live with RA. You can’t live cirrhosis.

I’m not filling any prescriptions just yet. I’d really like to celebrate my birthday with a glass (bottle… jug???) of wine and travel without worrying about side effects.

Here’s hoping.

Living With Rheumatoid Arthritis Almost a Year Later

07.24.11

People ask me about my Rheumatoid Arthritis. Most days I smile and say something to make them feel better, because really that’s why they’re asking.

I went from 60 to zero in a matter of days. I went from running, loping really, long distances to needing naps twice daily and being unable to uncurl my hands. I was fit and trim, and then inactivity and medicines left me bloated and queasy. The uncontrollable parts of it all makes me uncomfortable, and I sense it does the same for the people around me.

I’m almost back to being me. I’m a little stiff in the mornings, and I can’t exercise for more than two hours. I’d like to play a proper tennis match, but if I stop exercise after 90 minutes I seldom ache in my joints, when I pass 90 minutes my hands, hips, knees and ankles ache for 24 hours. I’m confident that this will change and I will return to proper tennis.

The Simponi saved my life. It didn’t cure me of Rheumatoid Arthritis, yet, but the results have been so fabulous that if this is as good as it gets I’m really happy. I’m still taking hydroxychloroquine and we may add back the methotrexeate or some other chemo, but for now the two medicines seem to be knocking things out nicely.

I exercise every day. I exercise partly because I’m a person that needs to move and it makes me happy, and partly because it’s an important part of living with Arthritis. I don’t take my motion for granted as I once did, and I’ve added yoga back into the mix. I also spend at least 30 minutes every afternoon floating in the pool. The absence of gravity is wonderful.

When it was clear that I had RA I felt my world crashing in on me. I thought it was the end of everything. Now it’s just a bump in the road.

 

Injecting Myself

10.24.10

I had a ton of anxiety about starting Humira injections. I wasn’t worried about the medical aspect of taking a TNF Inhibitor (Tumor Necrosis Factor… my mom keeps asking what I’m taking). What gave me anxiety was the fact that I was going to have to inject myself. Here’s a video I made with the Humira pen.

Well, I ended up using Simponi instead of Humira. It’s a once a month injection rather than bi-weekly. They’re quite similar in many ways, and Simponi appealed to my doctor for various reasons. It appealed to me because I was thinking that I’d just pay a nurse to do the injections for me. I figured it would cost a little bit of money, but that’s why we make it, right?

I’ve been really uncomfortable, like canceling vacations uncomfortable. I’m taking a boat load of medicine just to be able to move well, and now I’m gobbling Prilosec twice a day because we’re worried I’m going to get an ulcer from the number of pills.

So I got the Simponi. And I looked at the setup and thought, I can do this.

I told the kids I needed some time alone. I went upstairs, read the instructions, opened the pen up and sat down to inject.

I wiped my thigh a few times with rubbing alchol and waited for it to dry. I squeezed a bit of skin into a hump and placed the pen at a 90 degree angle to my skin.

I pressed the button until I heard a click, and then I held the pen tightly against my thigh until I heard a second click.

And then I had to double check the medication window because I didn’t feel anything. Not a thing.

It will be several months before I know if this is the right medication for me, but unlike the methotrexate I don’t have constant diarreah, and unlike prednisone it holds some promise for a more permanent remission.

Whomever came up with that delivery system is my hero. I’m not at all worried about the next injection. It’s quite likely that I’ll take a video when I do it, because I’d hate for anyone to feel as terribly afraid as I’d felt just a few weeks ago.