Well... I am officially moved into my parents home. It was such a blessing to have so many people come out and help. Not only did I feel loved, but it reminded me that people still care. Some days get pretty lonely. Your day is so filled with pain and tiredness that all you can do is stay in bed. So naturally you loose contact with the world outside. That has been a hard thing for me lately. Slowly I have been able to witness my independence disappear from me. Social activities are very few as it is hard to find the energy to even get to the place needed. Naturally one misses out on things when you are absent from other events.
However, it is not just the social activities that are becoming few. It is my ability to do things for myself. I have talked about the dizziness before. The other day, I met with a specialist regarding the ear. As per usual that required more blood work. We talked about why I would be experiencing such dizziness. Is it the autoimmune? Is it the medication? Did some medication damage my inner ear? The doctor does not know. He wanted to take the less expensive approach by ordering some blood work and if nothing shows up to give him answers then we move toward the extremely expensive approach. That requires some tubing going through my ear to check deep inside the ear for disruption. In the meantime, his concern for me was my dizziness. I am at a big risk for falling. I had to stand up, close my eyes, stick my arms strait out, and march in place. I could not even lift my foot off the ground very well, if at all because of the loss of balance. I could not stand in place on my own in that position. So there is a very good chance I will have to use a cane to help me walk because wall walking does not seem to be the answer. We were hoping that with some time off of the terrible medication, the dizziness would be better. Tomorrow will be three weeks since I have been off of them. The only difference that has made is that I am not so sick to my stomach and I am able to get out of bed a little more.
My other new issue that is taking away my independence is my ability to make a fist and hold onto things. I can only bend my fingers so far without it hurting or putting strain on them. There is no strength. Holding a hair dryer is becoming nearly impossible. My fingers go stiff along with pain and swelling. Once again, is it a reaction to the medication? Or is it something else? This is the second doctor who has mentioned MS to me. Although my MRI was clean when they checked for it a month ago. It would make sense with the dizziness added. I seem to lean towards the right, and the left side of my face appears to be numb and swollen. It is not a big lean to the right, but if you pay attention you can definitely notice. Who knows what is causing that. It could be my body reacting to the dizziness. I do have a more clear picture of things around me if I tilt my head a bit. With all the new things appearing, it is harder for me to understand that this all could actually be SAPHO SYNDROME. I seem to just have symptoms of every autoimmune disease. Or at least that is what it feels like.
Quite frankly I am a mystery to the doctors. Nothing about my symptoms fit into the norm. So while I am at the mercy of doctors to help me, I am becoming more crippled as time goes on. I am much more comfortable at my parents home. There is lots of space and love throughout. That too is a blessing that I am able to return home to get better.
With all that I am missing out on, each day I am learning to appreciate or be reminded of the things I have and what a blessing it was to have the things that I did. So much are things taken for granted. Perhaps all this is a lesson for me to be thankful and to know what it is like to loose control of your body. I do not have the answer to that, but I will learn from it none the less. So when last Saturday approached I saw a few guys that I had asked to come help me move came, I was thankful. But as the time kept going, more people would show up. After everything was unloaded at my parents and we all stood around in a group on the driveway, there were twenty people. I was blessed.
So despite the fact that I miss out on a lot of things, and may feel lonely at times, I know that I am loved and very blessed. Last Saturday certainly showed that to me. It may be a little thing to most people, but to me it was everything. It was a flicker of hope and light in my life.
However, it is not just the social activities that are becoming few. It is my ability to do things for myself. I have talked about the dizziness before. The other day, I met with a specialist regarding the ear. As per usual that required more blood work. We talked about why I would be experiencing such dizziness. Is it the autoimmune? Is it the medication? Did some medication damage my inner ear? The doctor does not know. He wanted to take the less expensive approach by ordering some blood work and if nothing shows up to give him answers then we move toward the extremely expensive approach. That requires some tubing going through my ear to check deep inside the ear for disruption. In the meantime, his concern for me was my dizziness. I am at a big risk for falling. I had to stand up, close my eyes, stick my arms strait out, and march in place. I could not even lift my foot off the ground very well, if at all because of the loss of balance. I could not stand in place on my own in that position. So there is a very good chance I will have to use a cane to help me walk because wall walking does not seem to be the answer. We were hoping that with some time off of the terrible medication, the dizziness would be better. Tomorrow will be three weeks since I have been off of them. The only difference that has made is that I am not so sick to my stomach and I am able to get out of bed a little more.
My other new issue that is taking away my independence is my ability to make a fist and hold onto things. I can only bend my fingers so far without it hurting or putting strain on them. There is no strength. Holding a hair dryer is becoming nearly impossible. My fingers go stiff along with pain and swelling. Once again, is it a reaction to the medication? Or is it something else? This is the second doctor who has mentioned MS to me. Although my MRI was clean when they checked for it a month ago. It would make sense with the dizziness added. I seem to lean towards the right, and the left side of my face appears to be numb and swollen. It is not a big lean to the right, but if you pay attention you can definitely notice. Who knows what is causing that. It could be my body reacting to the dizziness. I do have a more clear picture of things around me if I tilt my head a bit. With all the new things appearing, it is harder for me to understand that this all could actually be SAPHO SYNDROME. I seem to just have symptoms of every autoimmune disease. Or at least that is what it feels like.
Quite frankly I am a mystery to the doctors. Nothing about my symptoms fit into the norm. So while I am at the mercy of doctors to help me, I am becoming more crippled as time goes on. I am much more comfortable at my parents home. There is lots of space and love throughout. That too is a blessing that I am able to return home to get better.
With all that I am missing out on, each day I am learning to appreciate or be reminded of the things I have and what a blessing it was to have the things that I did. So much are things taken for granted. Perhaps all this is a lesson for me to be thankful and to know what it is like to loose control of your body. I do not have the answer to that, but I will learn from it none the less. So when last Saturday approached I saw a few guys that I had asked to come help me move came, I was thankful. But as the time kept going, more people would show up. After everything was unloaded at my parents and we all stood around in a group on the driveway, there were twenty people. I was blessed.
So despite the fact that I miss out on a lot of things, and may feel lonely at times, I know that I am loved and very blessed. Last Saturday certainly showed that to me. It may be a little thing to most people, but to me it was everything. It was a flicker of hope and light in my life.
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