I am happy to report that compared to the last 4 months, I feel like a new woman. Still a woman with MG, but so much better than I was. I was getting so depressed feeling like I was trying so hard to accept this illness and getting kicked down a hill day after day. Every morning I awoke to burning muscle pain and stinging joint pain, not to mention fatigue, nausea, stomach pain, and ultimately depression. Who wouldn't be depressed with a daily routine like that ending in severe muscle weakness and double vision by the afternoon clear into the evening?
Anyway, the lesson I learned is that just because I have this new illness I am still learning to live with it is important to listen to my body. Had I done that I might have called the doctor in April and explained how lousy I felt every day. Instead I convinced myself that it was just something I had to accept and that was how life was going to be for the rest of my days. I have many friends with MG and they have fluctuations in their illness and continue on so I just had to put on my big girl pants and get on with it.
Well, now I know it was not the MG but the Imuran. Most MGers to great on it, even though it takes up to 18 months to show success (also contributing to me chalking all of my problems up to the MG, I was supposed to be patient after all). Well, I am one of the small percentage of people whose liver does not tolerate Imuran, so I beat mine up for 4+ months giving the medicine the old college try.
I feel like I have stepped out of a dark fog. Yes, I still have weakness and double vision and pain but nothing like I have put up with for almost 1/2 a year. A lesson learned indeed, and I am so greatful that there isn't any lasting damage. Until next time - God Bless - Jen
Sunday, July 18, 2010
Tuesday, July 13, 2010
One Mississippi, Two Mississippi...
Ahhh, what a week. So, rewinding to last week I only worked Tuesday. Wednesday my lovely mother in law drove me to Greektown Casino to stay at the new hotel, very nice by the way, and have some fun pre neuro appointment in Ann Arbor. While I can't post on any new exciting winnings I was able to play from noon until 1am on 40 dollars so Chuckie Cheese for kids provided well. The last three hours I lost the $100 I won while waiting for my momma in law to return from her gambling bliss. I had gotten too weak to walk the floors in search of her and was afraid if I left my seat she wouldn't find me or I wouldn't get a seat back to sit in. When she did come back I still had $34 so not too shabby.
Thursday I went to the neurologist and my liver enzymes were through the roof so off the Imuran and on to Cyclosporine. We'll see how that fares. On day 4 of it I had a major migraine with nausea and an all over awful feeling but I am now on day 5 and doing pretty well. He also said we aren't seeing good enough results with my IVIG schedule so I now have to have in home IV treatment every week for 6 weeks and if no improvement it is on to Plasmapherisis and if that doesn't work we talk thymectomy...which I am not in the mood for, If I can live the rest of my life without surgery I will be a happy woman. As it stands, pre-MG I have had too many surgeries to list on any doctor's office paperwork.
He did run a panel for other autoimmune diseases given the skin symptom (Livedo Reticularis with Reynauds) but he thought it was probably the result of the frequent IVIG and my bunk heart. Thankfully the AI panel came back clean so I think he is correct.
Tomorrow is going to be one doozy of a stressor with a chest echo at 9am to see how my heart is holding up with all this abuse and my dad goes in to have his upper right lung lobe removed...too long to explain here, just keep him in your prayers.
Other than that, and I think that is quite enough, things are staus quo around here. Going well with an a$$load of stress dumped on us. No such thing as a calm week in the Walsh household. I am hoping the new IVIG schedule brings brighter and stronger days and I am already feeling loads better without the Imuran wreaking havoc on my liver.
John is in soccer camp and loving it, band camp is next month so he has been quite busy lately. Cindy is getting cuter by the minute. Pat is up to his eyeballs in school and staying strong and focused to get his degree and I am just 'eeking out the strength I have to keep my job and our house afloat.
I would say I will post soon but whenever I do that, I fail so until next time I hope you are all well.
Hugs,
Jen
Thursday I went to the neurologist and my liver enzymes were through the roof so off the Imuran and on to Cyclosporine. We'll see how that fares. On day 4 of it I had a major migraine with nausea and an all over awful feeling but I am now on day 5 and doing pretty well. He also said we aren't seeing good enough results with my IVIG schedule so I now have to have in home IV treatment every week for 6 weeks and if no improvement it is on to Plasmapherisis and if that doesn't work we talk thymectomy...which I am not in the mood for, If I can live the rest of my life without surgery I will be a happy woman. As it stands, pre-MG I have had too many surgeries to list on any doctor's office paperwork.
He did run a panel for other autoimmune diseases given the skin symptom (Livedo Reticularis with Reynauds) but he thought it was probably the result of the frequent IVIG and my bunk heart. Thankfully the AI panel came back clean so I think he is correct.
Tomorrow is going to be one doozy of a stressor with a chest echo at 9am to see how my heart is holding up with all this abuse and my dad goes in to have his upper right lung lobe removed...too long to explain here, just keep him in your prayers.
Other than that, and I think that is quite enough, things are staus quo around here. Going well with an a$$load of stress dumped on us. No such thing as a calm week in the Walsh household. I am hoping the new IVIG schedule brings brighter and stronger days and I am already feeling loads better without the Imuran wreaking havoc on my liver.
John is in soccer camp and loving it, band camp is next month so he has been quite busy lately. Cindy is getting cuter by the minute. Pat is up to his eyeballs in school and staying strong and focused to get his degree and I am just 'eeking out the strength I have to keep my job and our house afloat.
I would say I will post soon but whenever I do that, I fail so until next time I hope you are all well.
Hugs,
Jen
Friday, July 2, 2010
One doozy of a week!
Sorry it has been so quiet here, I just really needed a time out. I have had a very full week, some good, some bad. Sunday I almost ended up in the hospital when my whole body stopped working. I was sitting on the couch with my 4 year old and everything gave out. My legs wouldn't move, my arms wouldn't move, my head slumped backward, and when I tried to speak my tongue fell back towards my throat. My husband knew the drill and put a mestinon under my tongue, he had to hold my body and support my head so it would stay in my mouth. I came around after a long and scary 20 minutes or so and he watched me like a hawk. Monday I had a doctor's appointment and while I was quite exhausted I was no where near as bad as I was on Sunday.
So the doctor's appointment could take up a whole blog but I will focus on the nitty gritty. while I was there my arms, hands, and feet did something that has been happening off and on for the past 6 months. I now have confirmed Raynauds (where your fingers and toes turn white upon the slightest exposure to cold, then when they warm up they turn this freakish blue/purple color. This is pretty common and as long as I keep my hands and feet warm I don't have to worry about losing my fingers and toes. The more frustrating and frightening part of the appointment was when he saw my arms. He called it Livedo Reticularis and said it is linked with 3 autoimmune diseases, none of which is MG...of course. So I see my neuro next week and am supposed to discuss it with him. I am freaked out that I have another disease on top of this and that my meds have been masking the symptoms. Though I look for blessings in everything and the blessing in this is that if I do have another AI I have been receiving treatment for it since it started and it would also explain why my MG has not been responding to treatment as well as we had hoped.
Wednesday was wonderful, I woke up feeling awful and was so weak, stressed, and tired that I just could not work. So I called in and while I was resting my Grandma called and offered to pick me up. What a wonderful relief. I had a day of quiet rest in my Grandma's loving home. No kids asking for food or attention, no husband asking where this is or that is or can I make a phone call for him, no computer tempting me to work. I just relaxed and recharged...ahhh.
I am feeling much better today. We went to my in-laws this evening and the kids played in the pool. I sat on the edge and soaked my feet and enjoyed the sun and fresh air. I am so excited for the long weekend, I hope my health allows me to enjoy it. I think that about sums it up.
So the doctor's appointment could take up a whole blog but I will focus on the nitty gritty. while I was there my arms, hands, and feet did something that has been happening off and on for the past 6 months. I now have confirmed Raynauds (where your fingers and toes turn white upon the slightest exposure to cold, then when they warm up they turn this freakish blue/purple color. This is pretty common and as long as I keep my hands and feet warm I don't have to worry about losing my fingers and toes. The more frustrating and frightening part of the appointment was when he saw my arms. He called it Livedo Reticularis and said it is linked with 3 autoimmune diseases, none of which is MG...of course. So I see my neuro next week and am supposed to discuss it with him. I am freaked out that I have another disease on top of this and that my meds have been masking the symptoms. Though I look for blessings in everything and the blessing in this is that if I do have another AI I have been receiving treatment for it since it started and it would also explain why my MG has not been responding to treatment as well as we had hoped.
Wednesday was wonderful, I woke up feeling awful and was so weak, stressed, and tired that I just could not work. So I called in and while I was resting my Grandma called and offered to pick me up. What a wonderful relief. I had a day of quiet rest in my Grandma's loving home. No kids asking for food or attention, no husband asking where this is or that is or can I make a phone call for him, no computer tempting me to work. I just relaxed and recharged...ahhh.
I am feeling much better today. We went to my in-laws this evening and the kids played in the pool. I sat on the edge and soaked my feet and enjoyed the sun and fresh air. I am so excited for the long weekend, I hope my health allows me to enjoy it. I think that about sums it up.
Subscribe to:
Posts (Atom)