Smart Mouth

I ate lunch at Arby’s today, while BB’s truck was getting the oil changed. The weather is a little cooler here today, and I didn’t sleep too well last night. The combination of those two things, and I suppose the decrease in my powdered muscles, has me feeling pretty blah today.

I took a trip to the ladies room after eating my lunch and the door to the john was one of those old knobs shaped like a circle with a raised part in the middle that you are supposed to grip and spin to lock and unlock your door. Gripping and spinning are not favorite pasttimes of mine. So, there I was. Stuck in the john. When my fingers are swollen a lot, and there is pain, it is pretty difficult to tell how hard you are holding onto something. The tendons in my fingers and wrists have gotten tight through the years, and this leads to them slipping off and back onto the joints, which is sometimes called “triggering”. I will think I am going to bend my finger and there will be a 1-2 second delay while the tendon slips off of the knuckle and back onto it, which leads to jerky and unstable motions. Incredibly annoying and frustrating. I was probably only technically “stuck” in the Arby’s john for 15-30 seconds, but it feels like a lifetime until that door opens and I am free! I am always afraid someday I will have to crawl out from under the door and God knows the levels of fecal bacteria that will cover me if I ever have to do that! I read a statistic, (which if you joined me in a public restroom lately I have already told you, poor Kasee bless her heart I have told her about 50 times), that there is 100 times the amount of fecal bacteria found on the bottom of a woman’s purse (after you set it on the floor) than on the toilet seat in a public restroom. Now, if that doesn’t make you want to never use a public restroom again, I don’t know what will! All knobs in public restrooms should slide side to side, at least then if my fingers hurt I could give the handle a good whack with my purse and I would be FREE!

ANYWAY. My old and dear friend Stacey, (old meaning- we have been friends since she kicked a dodgeball into my face in PE class, not old like she is an old lady), sent me some questions today and I thought I would answer them here, for all to see! (Hope you don’t mind Stac!)

Can I ask a few questions? Is it hard for you to function day to day? Yes and No. Some days it is impossible to do things that I want to do or that I had planned to do. I have become very gifted at adapting. I have shoes that don’t have laces for days my fingers don’t want to tie, etc.. There are days when I cannot make the bed or do simple household chores like that because the joint feels so tender and swollen that even simple movement is incredibly painful and the sheets feel like they weigh 500 pounds. Those are the days I mostly rest. I have to pace myself everyday, to make sure I don’t use up all of my spoons. (If you don’t know what that means, look up www.butyoudontlooksick.com to see the spoon theory.) BB and the kids know when I am not feeling as well, sometimes I don’t even have to say anything, and then will do things for me without me even having to ask. I think emotionally it is more difficult that physically. There are so many things that I want to do, and feel like I need to do, that it is hard to not try to push myself. I have gotten better over the years. I accept now that I probably will never be able to have a “job” ever again, unless there becomes something available for people who can’t sit, stand, walk, bend, lift, rotate, or use any major joint for. If you hear of anything, let me know.

When you say the meds stop working…do you kind of ‘freeze up’? (I remember you saying your fingers wouldn’t function and you couldn’t button your shirt). When I say the meds stop working, that means that I am about to “flare”. Most people with active RA have periods of remission and one to three flares a year, but there are people that go years without a single flare. A “flare” is a period of active and uncontrolled inflammation in the membranes of a joint. I have frequent flares and I have not technically ever been in remission. When I am flaring I am very swollen, even when I have little to no activity. (I can pretty much guarantee I will be swollen if I try to rake the yard, but when I am flaring sitting in a chair for too long will make me swollen.) The inflammation causes a loss of joint shape and function, resulting in pain, stiffness, swelling, and movement limitation. I experience a lot of “triggering” and jerking in my joints, it will be hard to move around and hard to sit still, squeeszing a toothpaste tube or shampooing my hair become monumental tasks. The medicines I take suppress my immune system to keep it from attacking my joints, when the meds fail to be effective my immune system is essentially in overdrive attacking what it thinks is disease in the lining of any joint in my body. This means any part of me that bends, but it can also affect your eyes, your heart, your lungs, basically anything that has a lining. It feels a lot like you feel when you are just recovering from the flu, fatigued and just a general sick feeling, and everything that bends hurts.

Are you in a lot of pain when that happens? Most of the time the pain is pretty manageable. I have pain pills I can take in the daytime, if I need them, and I take pain medication to sleep every night. Occassionally it can become overwhelming, pain so incredible I don’t know how I will be able to bear it. But, when that happens I usually only feel that way for a day or two and then it gets better. So, I just try to hold on. Even on really good days I have about a hour or two of morning stiffness before I start to feel ready to do things like get dressed or clean the house. I don’t really remember the last time that I didn’t have some pain somewhere in my body. You get used to it. It is not like I feel like screaming out in agony all day, but it does make you feel pretty tired.

Do your Dr’s think the infusions will help you? My doctor is very hopeful that Rituximab will work for me. The last three drugs that I was on (Enbrel shots, Remicade Infusions, and Humira shots) are all in the biologicals category, kind of like the big guns for RA treatment. They all worked by blocking a protein in your immune system called TNF (tumor necrosis factor) that causes joint swelling and damage. Rituximab is different because it selectively targets the B cells that are thought to play a key role in the inflammatory process of the disease. The idea is basically that the diseased B cells are sent to slaughter and replaced by healthy B cells. My doctor’s thought is that at least in the short term it will work well, because my immune system is not used to be “shut off” in this way. Where as the three previous treatments all worked the same way; so my freaky immune system just got better and better at “adapting and overcoming” the medicines.

Does it actually suppress the arthritis or make it tolerable to live with? It suppresses the immune system, which makes the disease less active. But, it doesn’t really get rid of it. As for making it tolerable to live with; I guess that remains to be seen. I really hope it will. But, there really is no answer. I asked my doctor recently if it was like this for everyone, or if I was just a freak. She said that she has very few patients that never have been in remission, and I am one of them. There is no answer for why that is, or if it will ever change. I guess as far as immune systems go I got a pretty kick ass version, it is just wired up wrong. In the past when I haved tried a new medicine it works well for at least six months, and then the benefits start to diminish. But, I think my life is more than tolerable most days! I think it is pretty great, although it would be ever so sweeter if the RA would hit the road! My goal is really just to be able to function everyday without having to worry about it will affect me in a few hours or the next day. Like, if I carry this firewood inside and stack it all up, will I have to lay down for two hours? Or, that I would not have to choose between doing housework or jumping on the trampoline with Carsten. I honestly don’t know if it is even a reality to hope for that. That is the crappiest thing about RA, that there are so few answers.

Sorry for all the questions, I just want to be able to understand a little better. Don’t ever be sorry to ask me anything about RA. I think that there is a general misconception about what RA is, and even I was misinformed about it the first 5-6 years I had it. So, by no means do I expect everyone to know what it is or how it feels. I will never be unwilling to answer any question anyone has. I feel like the only way it gets easier to deal with it is by talking about it. So, thanks for asking!

Melisa