Hi, all. Wow I am amazed at all that is going on in MS World. I posted a short note about Tysabri, but thought I would introduce myself properly.
I have PPMS and have spinal condition called Arachnoiditis. It is where the nerves in your spine clump up, very painful, one bad chair can ruin a whole day. I had a morphine pump implanted four years ago this month , for the pain. It was one of the worst decisions I have ever made. But I have four kids, two still at home, and I was told it would give me better quality of life. A month after that was implanted my appendix ruptured. The morphine given via CSF , for me at least, caused horrible anxiety. I had it removed 2 yrs ago. About a month later, I was bending forward to pick something up at the top of a long flight of stairs and fell, backwards, fracturing my skull, and getting a couple of subderol hematomas. Since then, EVERYTHING has changed. I am not sure if my lack of ability to concentrate is due to the TBI or the MS. I take adderall for the fatigue, and was on Abilify for my depression but it constipated me so badly I think I gained 10 pounds in a week. I quit.
All this said, I guess my MS is pretty bad, as I only have 4 good hours a day. My two boys still at home are awesome, both adopted from Russia. The oldest 18, is a double amputee, and is my hero, the younger son is 16 he has a few issues due to fetal alchohol effects, but I see him growing up into an amazing person. I have a very supportive husband, and due to having 2 disabled people in the home, he is able to be our caregiver. I used to teach piano and voice, and was a very busy person. I have 3 precious grandkids, and my older kids are great.
One of my biggest issues is having interest in something. I used to fill in my free time with needle work and going out with friends etc....I have no interest or ability to do so. BUT when I went on Abilify it seemed like the interest came back, like sewing and needle work, which is really not as easy as it used to be, but my fine motor skills are not too regressed. I just couldn't handle the constipation and gaining SO MUCH WEIGHT!
I have come to understand this disease and so has my family, I trust God has a plan, however I never thought at 53 I would be in this place.
So that is me. I believe each one of us has a purpose, and so my prayer has been to find my purpose from my wheelchair. I live in a city where one in 200 women have some sort of auto immune disease. It has been hard to find a support group.
I promise not to whine too much, but it is great to know you all are here. I know just knowing you are not alone in this "journey" really helps. Fifteen years ago this all started, and as hard as they have been I wouldn't trade them, as I have learned so much about life, God and what really matters.
So have a blessed Labor Day everyone.
koniwithak
I have PPMS and have spinal condition called Arachnoiditis. It is where the nerves in your spine clump up, very painful, one bad chair can ruin a whole day. I had a morphine pump implanted four years ago this month , for the pain. It was one of the worst decisions I have ever made. But I have four kids, two still at home, and I was told it would give me better quality of life. A month after that was implanted my appendix ruptured. The morphine given via CSF , for me at least, caused horrible anxiety. I had it removed 2 yrs ago. About a month later, I was bending forward to pick something up at the top of a long flight of stairs and fell, backwards, fracturing my skull, and getting a couple of subderol hematomas. Since then, EVERYTHING has changed. I am not sure if my lack of ability to concentrate is due to the TBI or the MS. I take adderall for the fatigue, and was on Abilify for my depression but it constipated me so badly I think I gained 10 pounds in a week. I quit.
All this said, I guess my MS is pretty bad, as I only have 4 good hours a day. My two boys still at home are awesome, both adopted from Russia. The oldest 18, is a double amputee, and is my hero, the younger son is 16 he has a few issues due to fetal alchohol effects, but I see him growing up into an amazing person. I have a very supportive husband, and due to having 2 disabled people in the home, he is able to be our caregiver. I used to teach piano and voice, and was a very busy person. I have 3 precious grandkids, and my older kids are great.
One of my biggest issues is having interest in something. I used to fill in my free time with needle work and going out with friends etc....I have no interest or ability to do so. BUT when I went on Abilify it seemed like the interest came back, like sewing and needle work, which is really not as easy as it used to be, but my fine motor skills are not too regressed. I just couldn't handle the constipation and gaining SO MUCH WEIGHT!
I have come to understand this disease and so has my family, I trust God has a plan, however I never thought at 53 I would be in this place.
So that is me. I believe each one of us has a purpose, and so my prayer has been to find my purpose from my wheelchair. I live in a city where one in 200 women have some sort of auto immune disease. It has been hard to find a support group.
I promise not to whine too much, but it is great to know you all are here. I know just knowing you are not alone in this "journey" really helps. Fifteen years ago this all started, and as hard as they have been I wouldn't trade them, as I have learned so much about life, God and what really matters.
So have a blessed Labor Day everyone.
koniwithak
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