By Surprise
Someone mentioned to me that they just watched the Hunger Games movie series recently and commented on how good it was. My reply..."Every day is hunger games for me. The minute I wake up, I hear a voice say, 'May the odds be ever in your favor.'.
It seems like there is often something to catch me by surprise. It's only Wednesday and it has been a jam packed week.
I've been getting sicker and sicker with weird issues. The hardest is canker sores that have been covering my mouth and throat with just about anything I eat. I'm not talking about 2 or 3 but 15-20 canker sores. Not a joint in my body is without pain and swelling and over the past two weeks, I've had episodes where I can hardly walk, I feel so weak, as if I've been stripped of my muscles.
On Monday, I saw my doctor and after putting together the symptoms over the past 6 months, I've been diagnosed with a rare autoimmune disease called Behcets. It is inflammation of the veins and sometimes arteries but it causes the canker sores, joint pain, memory problems which I've struggled with, and can often be seen with MS...Ugh.
Needless to say, I left a little upset and some prescriptions that will hopefully calm things down so I can at least function a little better without pain. So far...it's not really working although I do get quite sick after I take it. I've cut out all sugar, gluten, processed foods and dairy. I basically eat chicken and cabbage. I've dropped 4 pounds almost in about two weeks.
So, I've been discouraged and frustrated but then I had the distinct thought that I have everything I need to manage this. I've looked back several times this year and have been so thankful for the health and wellness certification I did last year. I feel like that was a means of preparing me for this. I've got a long road ahead but I'm going to figure things out. Because I have another autoimmune disease called Ankylosing Spondylitis, my body uses calcium as a way of dealing with inflammation so my joints are getting big, calcified nodules on them. My bicep muscles and tendons have a significant amount of calcification inside them and it's hard to move or stretch my arm and shoulder. That's getting a little unnerving as well.
I'm going to start physical therapy on Monday and hopefully get some mobility and strength back in my arms and shoulders. I am making plans to see a Functional Medicine doctor who specializes in autoimmune conditions and I'm awaiting results on a few more blood tests and possibly starting IV vitamin D therapy.
What the heck. Another day in paradise.
The past two days, we've been in Salt Lake to meet with our new Gastroenterologist. Wow!! We have had 5 GI docs over the years and this one, by far, hands down, without a doubt is the best! I loved her so much. This was truly an act of God that we got in to see her and get this...she is over the new Undiagnosed Disease Network division at the U of U that is funded through NIH! She's going to meet with the board and suggest that the kids and I are entered into the program. How amazing is that?
At any rate...I'll write more tomorrow. We have so much going on and coming our way. I thought our Salt Lake trips would end by Mid October but we are now scheduling clear into December, nearly every other week. Next week, I'll be gone three days. Just today, between two kids, we are scheduled for four procedures!! Good grief, all before December 20th.
Anyways, I'm exhausted and stressed so I'm going to bed and hope that tomorrow looks a little brighter.
It seems like there is often something to catch me by surprise. It's only Wednesday and it has been a jam packed week.
I've been getting sicker and sicker with weird issues. The hardest is canker sores that have been covering my mouth and throat with just about anything I eat. I'm not talking about 2 or 3 but 15-20 canker sores. Not a joint in my body is without pain and swelling and over the past two weeks, I've had episodes where I can hardly walk, I feel so weak, as if I've been stripped of my muscles.
On Monday, I saw my doctor and after putting together the symptoms over the past 6 months, I've been diagnosed with a rare autoimmune disease called Behcets. It is inflammation of the veins and sometimes arteries but it causes the canker sores, joint pain, memory problems which I've struggled with, and can often be seen with MS...Ugh.
Needless to say, I left a little upset and some prescriptions that will hopefully calm things down so I can at least function a little better without pain. So far...it's not really working although I do get quite sick after I take it. I've cut out all sugar, gluten, processed foods and dairy. I basically eat chicken and cabbage. I've dropped 4 pounds almost in about two weeks.
So, I've been discouraged and frustrated but then I had the distinct thought that I have everything I need to manage this. I've looked back several times this year and have been so thankful for the health and wellness certification I did last year. I feel like that was a means of preparing me for this. I've got a long road ahead but I'm going to figure things out. Because I have another autoimmune disease called Ankylosing Spondylitis, my body uses calcium as a way of dealing with inflammation so my joints are getting big, calcified nodules on them. My bicep muscles and tendons have a significant amount of calcification inside them and it's hard to move or stretch my arm and shoulder. That's getting a little unnerving as well.
I'm going to start physical therapy on Monday and hopefully get some mobility and strength back in my arms and shoulders. I am making plans to see a Functional Medicine doctor who specializes in autoimmune conditions and I'm awaiting results on a few more blood tests and possibly starting IV vitamin D therapy.
What the heck. Another day in paradise.
The past two days, we've been in Salt Lake to meet with our new Gastroenterologist. Wow!! We have had 5 GI docs over the years and this one, by far, hands down, without a doubt is the best! I loved her so much. This was truly an act of God that we got in to see her and get this...she is over the new Undiagnosed Disease Network division at the U of U that is funded through NIH! She's going to meet with the board and suggest that the kids and I are entered into the program. How amazing is that?
At any rate...I'll write more tomorrow. We have so much going on and coming our way. I thought our Salt Lake trips would end by Mid October but we are now scheduling clear into December, nearly every other week. Next week, I'll be gone three days. Just today, between two kids, we are scheduled for four procedures!! Good grief, all before December 20th.
Anyways, I'm exhausted and stressed so I'm going to bed and hope that tomorrow looks a little brighter.
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