Thursday, April 28, 2011
Another Way to see things. . .
Love this song--"Blessings" by Laura Story. Again, reminding myself that I am useful to God right here, where I am.
Wednesday, April 27, 2011
Between a Rock and a Hard Place
The kenelog shot finally worked—after about 10 days. I am up and moving again. Still some pain and stiffness, but the intensity is greatly relieved. My jaw is especially better—it was the first thing I noticed! Hurray! I even managed to plant some tomatoes and peppers this past weekend—I love my garden.
Ah, but there is a price for this relief. A few months before I had my first big RA flare, I was working hard on a project at work. I came down with the flu, and then a light case of shingles. The rash was fairly light, but the virus itself laid me out for nearly a month. I was so fatigued that when my RA began, I at first thought it might be shingles again.
Fast forward—four years into my RA battle. The shingles/chicken pox virus is one of those that always lays dormant in your body. So last spring after a particularly busy time, it reactivated again. The rash was light, but again, the virus itself made me feel horrible. Chills, fever and a terrible weakness. At first I didn’t realize I had shingles, but once diagnosed and started on antivirals it quickly began to get better. That time.
After that, each time I received my Orencia infusion, the shingles flared. Sometimes the rash would erupt and be full-blown, other times it would only cause tingling on my skin where the rash usually was. But always it made me ill. My gp calls it viremia, the feeling you get when you are coming down with a virus—chills, achiness, tiredness. Sometimes I would be so weak I could barely sit up—at one point last summer I spent nearly 3 weeks in bed—with shingles.
So before every Orencia infusion I began taking anti-viral drugs and continued them until the shingles went away. I even took a break from Orencia, and that seemed to finally let my immune system rest and put the shingles back into hiding in November. Until I got this kenelog shot. About a week after the shot, I noticed a little itching on my stomach, in the usual place. Then the chills began. And the awful weakness and tiredness that even prednisone can’t help.
More antivirals. And so even though my RA is better, I am still not feeling well. Less pain, but I still only want to sleep. The valacyclovir has kept the rash in check, and it’s only a little uncomfortable. I skipped my methotrexate shot for the week, trying to let my immune system get back on top of things.
I was already debating a change in biologics, and since I’ve reactivated the shingles once again, this may be the last straw. Would another biologic be less likely to keep it going? There’s very little research in this area, and I’ve been pretty much left on my own to find it. The only published research is on a few of the TNFs, which have been shown to cause an increase in shingles.
There do seem to be a few people, even without compromised immune systems, who have shingles over and over again. Doctors don’t seem to know what to do with them. I seem to be one of them.
In catching up on blogs this week, I came across a recent post at Gitzen Girl. I love her attitude. Love her blog, and she expressed what I was feeling exactly. I sat in tears.
It’s from April 13 and titled “Really.” Take a look—I needed to look at my situation from a different perspective. I am grateful, grateful that she helped me.
http://gitzengirl.blogspot.com/2011/04/really.html
Ah, but there is a price for this relief. A few months before I had my first big RA flare, I was working hard on a project at work. I came down with the flu, and then a light case of shingles. The rash was fairly light, but the virus itself laid me out for nearly a month. I was so fatigued that when my RA began, I at first thought it might be shingles again.
Fast forward—four years into my RA battle. The shingles/chicken pox virus is one of those that always lays dormant in your body. So last spring after a particularly busy time, it reactivated again. The rash was light, but again, the virus itself made me feel horrible. Chills, fever and a terrible weakness. At first I didn’t realize I had shingles, but once diagnosed and started on antivirals it quickly began to get better. That time.
After that, each time I received my Orencia infusion, the shingles flared. Sometimes the rash would erupt and be full-blown, other times it would only cause tingling on my skin where the rash usually was. But always it made me ill. My gp calls it viremia, the feeling you get when you are coming down with a virus—chills, achiness, tiredness. Sometimes I would be so weak I could barely sit up—at one point last summer I spent nearly 3 weeks in bed—with shingles.
So before every Orencia infusion I began taking anti-viral drugs and continued them until the shingles went away. I even took a break from Orencia, and that seemed to finally let my immune system rest and put the shingles back into hiding in November. Until I got this kenelog shot. About a week after the shot, I noticed a little itching on my stomach, in the usual place. Then the chills began. And the awful weakness and tiredness that even prednisone can’t help.
More antivirals. And so even though my RA is better, I am still not feeling well. Less pain, but I still only want to sleep. The valacyclovir has kept the rash in check, and it’s only a little uncomfortable. I skipped my methotrexate shot for the week, trying to let my immune system get back on top of things.
I was already debating a change in biologics, and since I’ve reactivated the shingles once again, this may be the last straw. Would another biologic be less likely to keep it going? There’s very little research in this area, and I’ve been pretty much left on my own to find it. The only published research is on a few of the TNFs, which have been shown to cause an increase in shingles.
There do seem to be a few people, even without compromised immune systems, who have shingles over and over again. Doctors don’t seem to know what to do with them. I seem to be one of them.
In catching up on blogs this week, I came across a recent post at Gitzen Girl. I love her attitude. Love her blog, and she expressed what I was feeling exactly. I sat in tears.
It’s from April 13 and titled “Really.” Take a look—I needed to look at my situation from a different perspective. I am grateful, grateful that she helped me.
http://gitzengirl.blogspot.com/2011/04/really.html
Friday, April 15, 2011
Frustrated
Yes, frustrated.
Which means I probably should not be blogging right now. I’ve been in a flare, on a higher than usual dose of prednisone and then had a kenelog shot on Wednesday. To say that I am not myself would be an understatement.
I’ve been slowing diving into a rheumatoid arthritis flare for about 6 weeks now—the first I’ve had in about a year, the worst I’ve had in about 3 years, though I haven’t felt really well for most of this past year (shingles for 5 months anyone?). First it was my jaw, and really almost unbearable pain. And several really strange/awful dentist-tmj appointments. My chiropractor has helped more than anyone. My rheumy’s office lost my call and didn’t return it. Now all agree it is probably RA.
Then about 25 changes in our Oklahoma weather—cold front, warm front. Cold front, warm front. I felt every one of them. Most of them kept me awake at night, swelled my fingers and toes, made me cry out at odd times. Several days all my fingers looked like they’d been bee stung--they were so fat and swollen. Why are the southern fronts the worst? My other RA friends and my dear Mother-in-law with fibro say the same thing. I feel like my joints are being played like a xylophone—ping, ping-ping, BONG—as the pressure changes inside a finger, an ankle, a toe. Musical joints.
Then the big one—complete exhaustion. Pain from jaw to feet and so stiff. My husband took one look at me and told me how much it looked like I was hurting. I pushed on with our weekend plans (5 teenage boys and other houseguests, church, a special event for my husband’s work), which only made things worse. I took more oral prednisone, which allowed me to keep going but didn’t end the flare.
So I gave in and went for a kenelog shot. I am a bit better—still very tired, but mostly what the shot has done is make me cry at the drop of a hat. Fun times for all at my house.
I have been so tired this year. I will probably miss an event that I really want to attend tomorrow—one of those once-in-a-lifetime things. I yelled at my kids yesterday. My house is a mess.
Do I need to change medicines? My rheumy wants me to choose my next biologic (I’ve used Enbrel, Remicade and have been on Orencia for nearly 3 years). We’ve discussed it, but I’ve refused to make a change yet. There was new damage to my shoulders on my last x-rays, but she will not voice a definite opinion. So it is up to me. I’m working on a spreadsheet with info about my choices, but really, right now, I just want to be told what to do. I don’t have the experience or knowledge to know what to choose. And her refusal to choose tells me that she is not sure a change will help either.
I want more of my life back—my body does not seem to respond well to overdoing, but what it thinks is overdoing and what I think are overdoing do not meet. I want to work again (I am doing a bit of part-time right now but not keeping up well with that). I want to volunteer and teach Bible classes and be the fun mom again. Even just a 50% improvement would make such a huge difference.
I’ve been reading from “Jesus Calling, Devotions for Everyday” to my daughter at night before she goes to sleep. It has been good for both of us. The theme, lately, seems to be trust. Here is March 30:
“I am taking care of you. Trust me at all times. Trust me in all circumstances. Trust me with all your heart. When you are weary and everything seems to be going wrong, you can still utter these four words: ‘I trust You, Jesus.’ By doing so, you release matters into My control, and you fall back into the security of My everlasting arms.”
I am trusting in the long-term plan. The kenelog shot is not helping that, though, today. Tomorrow has to be a better day.
Which means I probably should not be blogging right now. I’ve been in a flare, on a higher than usual dose of prednisone and then had a kenelog shot on Wednesday. To say that I am not myself would be an understatement.
I’ve been slowing diving into a rheumatoid arthritis flare for about 6 weeks now—the first I’ve had in about a year, the worst I’ve had in about 3 years, though I haven’t felt really well for most of this past year (shingles for 5 months anyone?). First it was my jaw, and really almost unbearable pain. And several really strange/awful dentist-tmj appointments. My chiropractor has helped more than anyone. My rheumy’s office lost my call and didn’t return it. Now all agree it is probably RA.
Then about 25 changes in our Oklahoma weather—cold front, warm front. Cold front, warm front. I felt every one of them. Most of them kept me awake at night, swelled my fingers and toes, made me cry out at odd times. Several days all my fingers looked like they’d been bee stung--they were so fat and swollen. Why are the southern fronts the worst? My other RA friends and my dear Mother-in-law with fibro say the same thing. I feel like my joints are being played like a xylophone—ping, ping-ping, BONG—as the pressure changes inside a finger, an ankle, a toe. Musical joints.
Then the big one—complete exhaustion. Pain from jaw to feet and so stiff. My husband took one look at me and told me how much it looked like I was hurting. I pushed on with our weekend plans (5 teenage boys and other houseguests, church, a special event for my husband’s work), which only made things worse. I took more oral prednisone, which allowed me to keep going but didn’t end the flare.
So I gave in and went for a kenelog shot. I am a bit better—still very tired, but mostly what the shot has done is make me cry at the drop of a hat. Fun times for all at my house.
I have been so tired this year. I will probably miss an event that I really want to attend tomorrow—one of those once-in-a-lifetime things. I yelled at my kids yesterday. My house is a mess.
Do I need to change medicines? My rheumy wants me to choose my next biologic (I’ve used Enbrel, Remicade and have been on Orencia for nearly 3 years). We’ve discussed it, but I’ve refused to make a change yet. There was new damage to my shoulders on my last x-rays, but she will not voice a definite opinion. So it is up to me. I’m working on a spreadsheet with info about my choices, but really, right now, I just want to be told what to do. I don’t have the experience or knowledge to know what to choose. And her refusal to choose tells me that she is not sure a change will help either.
I want more of my life back—my body does not seem to respond well to overdoing, but what it thinks is overdoing and what I think are overdoing do not meet. I want to work again (I am doing a bit of part-time right now but not keeping up well with that). I want to volunteer and teach Bible classes and be the fun mom again. Even just a 50% improvement would make such a huge difference.
I’ve been reading from “Jesus Calling, Devotions for Everyday” to my daughter at night before she goes to sleep. It has been good for both of us. The theme, lately, seems to be trust. Here is March 30:
“I am taking care of you. Trust me at all times. Trust me in all circumstances. Trust me with all your heart. When you are weary and everything seems to be going wrong, you can still utter these four words: ‘I trust You, Jesus.’ By doing so, you release matters into My control, and you fall back into the security of My everlasting arms.”
I am trusting in the long-term plan. The kenelog shot is not helping that, though, today. Tomorrow has to be a better day.
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