Por fear what?
Porphyria is a rare disease caused by a buildup of red blood cells and or porphyrins.
All of this news because of blisters on my fingers and toes?
It isn't possible is it that I could have another rare disease? Is it?
Turns out I have Pseudo porphyria which is so much better than the actual disease. I am somewhat relieved.
All I know is that the anti-inflammatory I depend on for pain control may be causing the blistering on my body. I have had to stop taking the medication. I now have severe joint pain. Fast forward 4 weeks I am referred to a Rheumatologist. A very nice Asian doctor with a thick accent. She examines me, looks at my x-rays and asks me a lot of questions. She told me if I didn't have CMT I would be in more pain! First time it has ever been an advantage. She also told me "you very strong lady. Why you no take pain medication?" I felt something in my head explode. 2 and a half years ago when I was in excruciating pain the doctors would only give me 15 pain pills a month. It was the beginning of the Opioid crisis awareness and I got swept in to mix. I had to go to pain classes and learn all about addiction and alternate forms of pain management. This doctor was kind and compassionate. She started me an arthritis medication and prednisone for when it's bad. I have Osteoarthritis and plain old age worn out arthritis. I knew I had it from the hip problems I had. But now I feel like I have a doctor who cares and wants to help me and it makes all the difference.
So the journey continues. Reading the word gets me through and my sweet husband. Don't know what I would do without him. I am thankful for so many things today and I feel God's arms around me, feeling peaceful.
Father God you have once again led to exactly where I need to be. Forgive my unwillingness and poor attitude. Lord I pray you will continue to watch over me. I also ask that you would use this blog to reach someone who needs encouragement and to know they are not alone in the struggle. Amen.
All of this news because of blisters on my fingers and toes?
It isn't possible is it that I could have another rare disease? Is it?
Turns out I have Pseudo porphyria which is so much better than the actual disease. I am somewhat relieved.
All I know is that the anti-inflammatory I depend on for pain control may be causing the blistering on my body. I have had to stop taking the medication. I now have severe joint pain. Fast forward 4 weeks I am referred to a Rheumatologist. A very nice Asian doctor with a thick accent. She examines me, looks at my x-rays and asks me a lot of questions. She told me if I didn't have CMT I would be in more pain! First time it has ever been an advantage. She also told me "you very strong lady. Why you no take pain medication?" I felt something in my head explode. 2 and a half years ago when I was in excruciating pain the doctors would only give me 15 pain pills a month. It was the beginning of the Opioid crisis awareness and I got swept in to mix. I had to go to pain classes and learn all about addiction and alternate forms of pain management. This doctor was kind and compassionate. She started me an arthritis medication and prednisone for when it's bad. I have Osteoarthritis and plain old age worn out arthritis. I knew I had it from the hip problems I had. But now I feel like I have a doctor who cares and wants to help me and it makes all the difference.
So the journey continues. Reading the word gets me through and my sweet husband. Don't know what I would do without him. I am thankful for so many things today and I feel God's arms around me, feeling peaceful.
Father God you have once again led to exactly where I need to be. Forgive my unwillingness and poor attitude. Lord I pray you will continue to watch over me. I also ask that you would use this blog to reach someone who needs encouragement and to know they are not alone in the struggle. Amen.
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