I'm afraid this is going to be one of "those" posts....the ones where I report what has been happening with me physically....I do not know where I'm going to go with it but I am glad you are along for the ride.
On Friday I went to see my rheumatologist. We discussed the fact that even if my blood tests showed improvement, that may not make the arthritis itself any better. And that is what seems to be the case. He said that due to our lack of options (I've tried and failed almost every biologic made or had bad reactions to them), and the fact that just the lessening of inflammation may mean that new damage may also be lessened--then his inclination is to keep going with the Xeljanz. It is also true that I have not really had a long period of time on it because of sporadic infections....so there is still hope that it may eventually help me more noticeably. But for now. Yeah. Pain is the name of the game.
My ankles, shoulders, hands and neck are all very painful. I can't get away from myself. No matter where I am or what I am doing I am firstly aware of, and suffering from, pain. The meaty areas at the base of my thumbs are swollen and bruised from the pressure put on them by my crutches. So to take a step--hurts my hands. My ankles are swollen grotesquely. My shoulders scream every time I move my arms and I cannot reach my arms out in any direction. And my neck is a constant background noise of pain.
I'm sorry to talk about this. I know that for some people who love me, it is hard to hear because they do not want me to suffer. And for others, it may simply arise impatience in them. "What?? another post on pain? Give it a break!!" I'm sorry to park here and be stuck here. It is the number one most demanding aspect of my life and as such, it appears everywhere I turn. And thus it is the thing which you must know about me, if you are going to know me at all.
Right now I'm staying at my dad's. I have recently stopped taking prednisone which was keeping me from sleeping for about a week. So once off of that, I crashed. I slept for 12 hours, two consecutive nights. Which felt amazing--even though I had a very hard time waking up. But tonight pain is the culprit in keeping me from sleep. I did get some but here it is 3:30 and I'm done sleeping....and was up at 1:00 for an hour. If I feel well enough to drag myself to the shower, I may go to church with my dad today. I am very grateful for my electric wheelchair and wish I could use it more often.
To add a note: I just got the report from my Urinalysis and that was positive. Meaning I have a UTI and/or Kidney infection. That means at least another week off of the Xeljanz and it also means that I need a different medication...which most likely means that I need IV therapy which means, either a week at the infusion center daily or an inpatient hospital stay. It is SO hard for me to get rides to NY for treatment and I rely on rides to get anywhere. On Mon, Wed , Fri. I may be able to take the bus. So that would only leave Tues and Thurs that I need transportation.
For now, I'm going to make a cup of tea and try to ignore my body....to find my spirit among this wreckage of bones and spend some time in prayer. May God bless your Lord's Day.
On Friday I went to see my rheumatologist. We discussed the fact that even if my blood tests showed improvement, that may not make the arthritis itself any better. And that is what seems to be the case. He said that due to our lack of options (I've tried and failed almost every biologic made or had bad reactions to them), and the fact that just the lessening of inflammation may mean that new damage may also be lessened--then his inclination is to keep going with the Xeljanz. It is also true that I have not really had a long period of time on it because of sporadic infections....so there is still hope that it may eventually help me more noticeably. But for now. Yeah. Pain is the name of the game.
My ankles, shoulders, hands and neck are all very painful. I can't get away from myself. No matter where I am or what I am doing I am firstly aware of, and suffering from, pain. The meaty areas at the base of my thumbs are swollen and bruised from the pressure put on them by my crutches. So to take a step--hurts my hands. My ankles are swollen grotesquely. My shoulders scream every time I move my arms and I cannot reach my arms out in any direction. And my neck is a constant background noise of pain.
I'm sorry to talk about this. I know that for some people who love me, it is hard to hear because they do not want me to suffer. And for others, it may simply arise impatience in them. "What?? another post on pain? Give it a break!!" I'm sorry to park here and be stuck here. It is the number one most demanding aspect of my life and as such, it appears everywhere I turn. And thus it is the thing which you must know about me, if you are going to know me at all.
Right now I'm staying at my dad's. I have recently stopped taking prednisone which was keeping me from sleeping for about a week. So once off of that, I crashed. I slept for 12 hours, two consecutive nights. Which felt amazing--even though I had a very hard time waking up. But tonight pain is the culprit in keeping me from sleep. I did get some but here it is 3:30 and I'm done sleeping....and was up at 1:00 for an hour. If I feel well enough to drag myself to the shower, I may go to church with my dad today. I am very grateful for my electric wheelchair and wish I could use it more often.
To add a note: I just got the report from my Urinalysis and that was positive. Meaning I have a UTI and/or Kidney infection. That means at least another week off of the Xeljanz and it also means that I need a different medication...which most likely means that I need IV therapy which means, either a week at the infusion center daily or an inpatient hospital stay. It is SO hard for me to get rides to NY for treatment and I rely on rides to get anywhere. On Mon, Wed , Fri. I may be able to take the bus. So that would only leave Tues and Thurs that I need transportation.
For now, I'm going to make a cup of tea and try to ignore my body....to find my spirit among this wreckage of bones and spend some time in prayer. May God bless your Lord's Day.
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