I knew the glass was half-full from RA.
Two months ago, I could do about half of what I could do before RA. The doctors kept saying my Rheumatoid Arthritis should be getting even better. I really wanted that, too. The doses of my RA medications were as high as they could go: Humira weekly (that’s a double dose); and methotrexate 25mg by injection (much more is absorbed by injection). Maxed out at those, my functionality was still about 50% on a good day.
So, when the doctor said lets try something else, I was game. Well, we went to Enbrel, which works almost the same as Humira. But, Humira is a long acting 2-week dose and Enbrel is a weekly dose. I asked the doctor and two pharmacists: Are we essentially cutting my RA medicine in half? They all said, “Not really.”
Counting on Rheumatoid Arthritis medicines
Every time I inject myself, I pray that it will help me get well. And then I thank God that I have the medicine and remember those who have had Rheumatoid Arthritis without these strong medicines to help them survive it. It really does help me remain hopeful – not to mention how that helps me stick myself.
Well hopefulness aside, it’s been over a month. I am 5 shots into the Enbrel regimen, and it’s not looking good. Every week is worse. I am productive only about 2-3 days per week now – sort of.
There is a lot more pain, of course. There is stiffness and weakness. There is fever, nausea, and lack of appetite. But the worst are the Sjogren’s syndrome and the fatigue. Sometimes, I literally cannot move. I cannot lift up my head.
There are no words to accurately describe how desperate it feels. The tiredness is so extreme. I feel like I’m falling down a hole in a cartoon; I keep sliding downward and there is not a bottom. Gravity is so strong.
Now, I am kicking myself for changing the prescription to begin with, of course. I knew the glass was half-full. I was grateful for that. What will this cost me? All of the suffering I could describe is nothing at all compared to wondering about the unseen damage that RA is causing within my tendons and joints and my eyes and my nerves.
But that’s not the worst. The worst thing about my half-full glass having spilled is the time that RA steals. Calendar pages fly by and my life is going on without me. Ouch.
I want my half-full glass back. And next time, I will put a sippy cup lid on it.
Update November 2009: The Life of a Professional Patient, Blog #3