I have decided to revive this platform for this blog. Although I know that most people that read it also read this. However if people who don't know us, find the FFOH blog, I don't want them to be confused by what we do.
So here is the update on my rheumatologist appointment. She doesn't think I have RA. Which is good,...I hope. She thinks I have something that mimics RA. I have a lot of muscle pain. Too much apparently for RA. The pain is throughout my body. More noticeable in my bottom half because it is load bearing. (And with all the weight I gained on my last migraine pills its quite a load.) My spine and neck are good. So that's good. Almost everywhere she touched, hurt. She asked a ton of questions and took a lot of time with me. I appreciated that.
She knows it is an autoimmune disease. However, she thinks it is more to do with soft tissue than just joints. There are beginning deterioration in both hips and both knees. Apparently with RA flare ups are different than just the constant overall pain that I have.
She gave me a different anti inflammatory which seems to be helping. She said not everyone can use naproxen. Apparently I am one of them. That would explain why they never helped with my migraines when I was prescribed them. She is sending me for a bone scan. She sent me for a bunch more blood work. So now we are back to the hurry up and wait part of the health care system.
When I had a name to research and learn about, I felt better. I felt more in control. I had something to work with. I was already getting my head around it. Now I feel pretty lost again. One thing stood out in my mind. Everyone I talked to physio, etc. told me that I needed to slow down. That pushing through the pain would cause more damage. But she told me that with whatever this is, that it won't matter. She said not to do things that hurt but pushing through and trying to ignore the pain, is fine. It won't matter. That scares me a bit. But at least I got a disease that suits my personality. I guess I'm good with that.
Thanks for reading. I know that you all care or you wouldn't bother to share precious time with me. For that I thank you.
Saturday 29 June 2013
Sunday 23 June 2013
RA and me
I have been absent for a while. I know it but I have really been struggling with this one. Mostly because I am sharing once again with the world. I have shared a lot of what FFOH does, a lot of what I do. Just a lot of my life. Some of you that follow this blog know that I have had migraine's for years. I finally after 20 years go them under control. I was relatively pain free for 6 1/2 months.
I was in Humbolt for the last of my CAIB courses. I sat on the bed in a hotel room with my knees up studying for 8 days. On Thursday my hip was stiff and kind of sore, but not that it would slow you down. I wrote my test on Saturday morning and got home just in time for the auction. I was dressed in my '80's garb and high heeled boots. I lasted until about 10 in my heels and my feet hurt so I swapped for my flats. After the auction I stood bent over a table for about an hour and a half. And then we went to the bar and stood for another hour. By the time I got home, my hip ached. Really hurt. We cleaned up the next day and I was limping. Chalked it up to sitting in the room reading for and then being bent over for so long.
And then it continued to hurt. It hurt for 4 weeks so I made a doctors appointment. They sent me for X-Rays and blood tests. Then they called me to come back. That is never a good feeling. It was a long week to wait.
Then they told me I have Rheumatoid Arthritis (RA). I have marked degeneration in my right hip. Since then it has also affected both hips, my knees and ankles.
And a diagnosis changed my life.
I have worked with women with cancer for 11 years. I have never had it. I'm not a survivor. I never really understood the emotional side of a diagnoses. I don't do well with the emotional side of anything actually. But I finally understand. Well a bit anyways. RA isn't life threatening. So it still isn't exactly the same. But it is life changing.
I have always worked hard. I try to always be the first one in and the last one out on anything I do. Being told that you have to slow down was not something I could get my head around. I have been incredibly tired lately but wrote it off as a side effect of the migraine pills. But now I had a reason.
They have prescribed me increasing doses of pain killers. Anti inflammatory drugs designed to reduce the inflammation in my joints which can also cause stomach ulcers but right now that is the least of my worries. They initially told me that the wait to see a rheumatologist was 5-6 months.
However, the physiotherapist and my doctor built a case for me and got me an appointment next week. For that I am grateful.
RA is an auto immune systematic disease. It is not "my knees get a little stiff in the morning" kind of arthritis. This is how it works. My body has decided that my joints need protection from an imaginary threat. My body is trying to immobilize my joints in order to stabilize them. Then it sends inflammatory cells to my joints. The more I do, the more my body send these cells. These cells if you are hurt help heal you. When you are not hurt, they act like acid on your bones. My body is fighting itself. In order to try to minimize the swelling in my joints, I am to do pretty much as little as possible because I am in what they call a flare up. A three month long no end in sight flare up.
I sit on a lot of ice in the evenings. I am pretty good in the morning but at night it's not good. I have found that I need a ton of sleep. And if I nap in the afternoon, I can work a bit later. And it hurts, all the time. Even with the pain killers, it still hurts. Sometimes I can barely walk. Sometimes not to bad but there is no rhyme or reason to it.
After the doctor told me what it was, I will admit, I was terrified. Your mobility is something that we all take for granted. Like any bit of our good health I suppose. It took me a couple of weeks to get my head around it. I shed some tears, freaked out a little and then came back to reality.
I am grateful for it where it is. It is not in my hands. I can still write. I can still work although I am slower but I am still able to work. And I have decided that it just hurts. I am still going to be able to do all of the things I want to, just maybe in a scooter.
I am not asking for sympathy. no one needs to send notes of encouragement. I don't write to make people to feel sorry for me. I am just letting everyone know at once. It is easier this way.
I am writing to remind everyone that we are one diagnoses away from a huge change in your life, your beliefs, and your priorities.
One diagnosis.
I was in Humbolt for the last of my CAIB courses. I sat on the bed in a hotel room with my knees up studying for 8 days. On Thursday my hip was stiff and kind of sore, but not that it would slow you down. I wrote my test on Saturday morning and got home just in time for the auction. I was dressed in my '80's garb and high heeled boots. I lasted until about 10 in my heels and my feet hurt so I swapped for my flats. After the auction I stood bent over a table for about an hour and a half. And then we went to the bar and stood for another hour. By the time I got home, my hip ached. Really hurt. We cleaned up the next day and I was limping. Chalked it up to sitting in the room reading for and then being bent over for so long.
And then it continued to hurt. It hurt for 4 weeks so I made a doctors appointment. They sent me for X-Rays and blood tests. Then they called me to come back. That is never a good feeling. It was a long week to wait.
Then they told me I have Rheumatoid Arthritis (RA). I have marked degeneration in my right hip. Since then it has also affected both hips, my knees and ankles.
And a diagnosis changed my life.
I have worked with women with cancer for 11 years. I have never had it. I'm not a survivor. I never really understood the emotional side of a diagnoses. I don't do well with the emotional side of anything actually. But I finally understand. Well a bit anyways. RA isn't life threatening. So it still isn't exactly the same. But it is life changing.
I have always worked hard. I try to always be the first one in and the last one out on anything I do. Being told that you have to slow down was not something I could get my head around. I have been incredibly tired lately but wrote it off as a side effect of the migraine pills. But now I had a reason.
They have prescribed me increasing doses of pain killers. Anti inflammatory drugs designed to reduce the inflammation in my joints which can also cause stomach ulcers but right now that is the least of my worries. They initially told me that the wait to see a rheumatologist was 5-6 months.
However, the physiotherapist and my doctor built a case for me and got me an appointment next week. For that I am grateful.
RA is an auto immune systematic disease. It is not "my knees get a little stiff in the morning" kind of arthritis. This is how it works. My body has decided that my joints need protection from an imaginary threat. My body is trying to immobilize my joints in order to stabilize them. Then it sends inflammatory cells to my joints. The more I do, the more my body send these cells. These cells if you are hurt help heal you. When you are not hurt, they act like acid on your bones. My body is fighting itself. In order to try to minimize the swelling in my joints, I am to do pretty much as little as possible because I am in what they call a flare up. A three month long no end in sight flare up.
I sit on a lot of ice in the evenings. I am pretty good in the morning but at night it's not good. I have found that I need a ton of sleep. And if I nap in the afternoon, I can work a bit later. And it hurts, all the time. Even with the pain killers, it still hurts. Sometimes I can barely walk. Sometimes not to bad but there is no rhyme or reason to it.
After the doctor told me what it was, I will admit, I was terrified. Your mobility is something that we all take for granted. Like any bit of our good health I suppose. It took me a couple of weeks to get my head around it. I shed some tears, freaked out a little and then came back to reality.
I am grateful for it where it is. It is not in my hands. I can still write. I can still work although I am slower but I am still able to work. And I have decided that it just hurts. I am still going to be able to do all of the things I want to, just maybe in a scooter.
I am not asking for sympathy. no one needs to send notes of encouragement. I don't write to make people to feel sorry for me. I am just letting everyone know at once. It is easier this way.
I am writing to remind everyone that we are one diagnoses away from a huge change in your life, your beliefs, and your priorities.
One diagnosis.
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