I surrender.
A few posts back, I was talking about this ridiculous RA flare-up and how I was pretty sure it was due to the fact that I stopped taking my methotrexate last November, and how I do NOT want to go back on the methotrexate, right? Well, I officially gave up this week. I called my doctor's office and they phoned in a methotrexate prescription for me.
I kept hoping the "flare-up" would get better, but I don't think you can even call it a "flare-up" any more if it's lasted for a month and gotten progressively worse. This past week it got insanely bad.
This next bit is going to sound like a lot of whining, and it is; but it's also in part to illustrate how disabling and downright painful RA is, for those who may not be aware:
My left foot is so swollen that I cannot fit it into anything but a flip-flop (and even then, the straps dig into the top of my foot and leave nasty indentations). I usually head upstairs at eight or nine in the evening to use the computer before bed. My knees hurt so badly that I have adopted the habit of bringing two large bottles of water upstairs with me in the evening so that I won't have to go back downstairs if I get thirsty. If I get hungry after I've come upstairs for the night, I stay hungry, because it's better than having to face the excruciating pain that going downstairs to the kitchen would cause me. Even just standing up from a chair and walking (more like hobbling) across a level surface is excruciating -- stairs are torture. The joints in my hands are swollen, and some of my fingers are starting to go crooked. I cannot use my hands for anything requiring any amount of grip strength -- opening bottled beverages, turning on a water faucet, etc. -- without searing pain. Fortunately, typing requires no grip strength and actually doesn't hurt too badly. You don't have to move your fingers as much as you'd think you do in order to type. My left wrist has developed a painful protrusion. I cannot straighten my left arm all the way because my elbow is all swollen and sore. My shoulders are killing me and have little range of motion. I am having wicked muscle spasms in my back, which are not directly related to the RA, but are due to the way I'm having to move my body because of the joint pain. I cannot sleep for more than an hour at a time at night without being woken up by pain in my shoulders or legs -- usually because I've been in the same position for too long and am trying to turn over.
I can't walk down the hallway at work without some well-meaning person asking me what is wrong or if I'm okay. I almost hate that more than anything.
I have read that within five years of diagnosis, 33% of RA patients are totally disabled, and within ten years, that jumps to nearly 70%. I was diagnosed four and a half years ago. I feel pretty much disabled right now.
So, I caved in and went back on the methotrexate this weekend. It's a once-weekly injection, and it takes several weeks to build up in your system before it starts working, so hopefully by the time I see my doctor next month, he'll be able to assess whether it's working or whether we need to try something else. Trying something else would actually be preferable for me, because I really, really hate this medication. I'm sick for a day after I take it, and I hate the inconvenience of having to sacrifice a lunch hour once a month to go get blood work done -- to say nothing of the fact that being on a medication which requires such monitoring is disconcerting at best. This stuff can destroy your liver and your bone marrow, among other things; hence, the need for the monthly blood work. I suppose it is still preferable to constant, unbearable pain and disability, however.
I kept hoping the "flare-up" would get better, but I don't think you can even call it a "flare-up" any more if it's lasted for a month and gotten progressively worse. This past week it got insanely bad.
This next bit is going to sound like a lot of whining, and it is; but it's also in part to illustrate how disabling and downright painful RA is, for those who may not be aware:
My left foot is so swollen that I cannot fit it into anything but a flip-flop (and even then, the straps dig into the top of my foot and leave nasty indentations). I usually head upstairs at eight or nine in the evening to use the computer before bed. My knees hurt so badly that I have adopted the habit of bringing two large bottles of water upstairs with me in the evening so that I won't have to go back downstairs if I get thirsty. If I get hungry after I've come upstairs for the night, I stay hungry, because it's better than having to face the excruciating pain that going downstairs to the kitchen would cause me. Even just standing up from a chair and walking (more like hobbling) across a level surface is excruciating -- stairs are torture. The joints in my hands are swollen, and some of my fingers are starting to go crooked. I cannot use my hands for anything requiring any amount of grip strength -- opening bottled beverages, turning on a water faucet, etc. -- without searing pain. Fortunately, typing requires no grip strength and actually doesn't hurt too badly. You don't have to move your fingers as much as you'd think you do in order to type. My left wrist has developed a painful protrusion. I cannot straighten my left arm all the way because my elbow is all swollen and sore. My shoulders are killing me and have little range of motion. I am having wicked muscle spasms in my back, which are not directly related to the RA, but are due to the way I'm having to move my body because of the joint pain. I cannot sleep for more than an hour at a time at night without being woken up by pain in my shoulders or legs -- usually because I've been in the same position for too long and am trying to turn over.
I can't walk down the hallway at work without some well-meaning person asking me what is wrong or if I'm okay. I almost hate that more than anything.
I have read that within five years of diagnosis, 33% of RA patients are totally disabled, and within ten years, that jumps to nearly 70%. I was diagnosed four and a half years ago. I feel pretty much disabled right now.
So, I caved in and went back on the methotrexate this weekend. It's a once-weekly injection, and it takes several weeks to build up in your system before it starts working, so hopefully by the time I see my doctor next month, he'll be able to assess whether it's working or whether we need to try something else. Trying something else would actually be preferable for me, because I really, really hate this medication. I'm sick for a day after I take it, and I hate the inconvenience of having to sacrifice a lunch hour once a month to go get blood work done -- to say nothing of the fact that being on a medication which requires such monitoring is disconcerting at best. This stuff can destroy your liver and your bone marrow, among other things; hence, the need for the monthly blood work. I suppose it is still preferable to constant, unbearable pain and disability, however.


7 Comments:
awww, so sorry to hear about this Catherine ... you really do sound brave - not wimpy at all ... or whining ...
and re meds & effects on the old body ... leo and i figure that chronic pain takes a horrible toll too - so why not use the meds, because atleast a person can try for some comfort, in the midst of pain ...
wishing you strength for this earthly journey ...
and may God's blessings find you ...
Thank you, Saija! You're right about the meds -- as nasty as methotrexate is, it's still better than having the RA running rampant.
**hugs** to you and Leo!
Holy shit, baby! Do you always have to "one up me"? (You know I'm kidding).
Stairs are my enemy too. Can't stand them at all. Have you considered on of those railway thingies? It's cheaper than an elevator.
Maybe you should consider something stronger. I mean, maybe hit the opioids harder. You can learn to function stoned. Most politicians and a lot of upper management do.. ;)
*** Big Teddy Bear Hug ***
I'll tell you what, Bear -- whenever I end up selling this house and moving (probably still a few years down the road), my next house will not have stairs.
I really don't want to take anything stronger for pain than the Vicodin I've been taking for years. I will if it comes to that, but it would be preferable to slow the progression of the RA enough that I won't be in so much pain in the first place.
**hugs** back at you!
our condo only has 3 stairs at the back and 4 in the front ... doable ... and the doors are all 36" wide ... leo really loves it ... stairs are his sworn enemy too!
Maybe you should listen to Dr. Oink.
Hahahahahahaha! "Dr. Oink" was always berating me for taking methotrexate and telling me it was an outdated RA med. Of course, he was wrong. It is still widely prescribed, often as a first treatment option, and most patients who take one of the newer meds (as do I) are still prescribed methotrexate in addition. And, apparently, my experience over the last month illustrates why that is so. "Dr. Oink" is clueless.
Incidentally, I am already noticeably improved after just one dose. :)
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