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.
Thursday, June 24, 2010
Summer and MG
Since we are in week two or more of weather in the 80's 90's I thought I would take a moment to address MG and heat. People with autoimmune diseases know all too well what the worst triggers for their illness are. These include stress, illness, infection, and obviously heat. Thankfully I have air conditioning, however it is a catch 22 because I LOVE SUMMER. Unless I am in a pool I cannot tolerate the temperature if it is above 75, I literally melt.
This morning it took 2 hours for my legs to work well enough to get out of bed. It is now 5:20pm and I am still stumbling and using the walker for safety reasons. In addition to my legs giving out the MG has attacked my muscles used for speech so it has been a quiet day in my home. I sound like a drunk when I talk and if I talk too long I have swallowing difficulties.
I know this sounds absolutely mortifying and while it is no walk in the park I am thankful that I have kept the breathing and swallowing difficulty at bay enough to avoid the hospital. Tomorrow is treatment day for me and for those of you who follow my blog you are well aware that as the days draw nearer to treatment I go downhill. The heat has just gotten the best of me this go around. I think two weeks ago it was my legs and eyes. I don't know why my legs have been a constant as I rest them when I am weak, maybe they just haven't had enough time to recover?
Some good things have happened in the past week that I would like to post on as well. Saturday was the Annual Meeting for the Great Lakes Myasthenia Foundation and it was a wonderful event. I met some new people and got to meet a few friends in person for the first time. The speakers did a fantastic job. Lisa Gigliotti was there to tell her encouraging story of living with courage and battling RA and MG. Dr. Glisson, a neuro opthalmologist presented a great presention with video on Ocular MG.
Wednesday, the radio show I taped 2 weeks ago aired locally. You can download it for free on iTunes, just search "The Johnnie Tuitel Show" or you can listen to the podcast here... http://www.publicrealityradio.org/programs/the-johnnie-tuitel-show/episodes/show-5-jen-walsh
I hope my readers are having a strong blessed week!
Jen
This morning it took 2 hours for my legs to work well enough to get out of bed. It is now 5:20pm and I am still stumbling and using the walker for safety reasons. In addition to my legs giving out the MG has attacked my muscles used for speech so it has been a quiet day in my home. I sound like a drunk when I talk and if I talk too long I have swallowing difficulties.
I know this sounds absolutely mortifying and while it is no walk in the park I am thankful that I have kept the breathing and swallowing difficulty at bay enough to avoid the hospital. Tomorrow is treatment day for me and for those of you who follow my blog you are well aware that as the days draw nearer to treatment I go downhill. The heat has just gotten the best of me this go around. I think two weeks ago it was my legs and eyes. I don't know why my legs have been a constant as I rest them when I am weak, maybe they just haven't had enough time to recover?
Some good things have happened in the past week that I would like to post on as well. Saturday was the Annual Meeting for the Great Lakes Myasthenia Foundation and it was a wonderful event. I met some new people and got to meet a few friends in person for the first time. The speakers did a fantastic job. Lisa Gigliotti was there to tell her encouraging story of living with courage and battling RA and MG. Dr. Glisson, a neuro opthalmologist presented a great presention with video on Ocular MG.
Wednesday, the radio show I taped 2 weeks ago aired locally. You can download it for free on iTunes, just search "The Johnnie Tuitel Show" or you can listen to the podcast here... http://www.publicrealityradio.org/programs/the-johnnie-tuitel-show/episodes/show-5-jen-walsh
I hope my readers are having a strong blessed week!
Jen
Thank you for the Award Kerri
My friend Kerri gave me this award. Thank you Kerri! Kerri is a fellow myasthenic, compassionate, an amazing author, a devout Christian, and most important an amazing friend and source of inspiration...
So my instructions are pretty simple and straight forward:
1. Thank the person who gave you this award. -- Check►
2. Share up to 10 things about yourself. Short & sweet
3. Pass the award along to up to 10 bloggers who you have recently discovered and think are fantastic!
4. Contact the bloggers you've picked and let them know about the award. -- of course!!!"
About Me:
1. I am a proud mama to a 10 year old - John and 4 year old - Cindy
2. I have been married to my amazing husband Pat for 11 years, love you honey!
3. There is no greater gift for me than the joy of doing things for others, I have had to get creative with this over the past year as my illness has stripped me of doing anything physical but I like to give emotional support or information on topics I am well versed in.
4. I wear many hats, I am a full time work from home travel agent, I moderate an MG support group (see link on the left for the google group if you have MG), I blog, I vlog (see you tube link on the right for videos on MG).
5. I just taped my first radio interview and it was a blast! You can listen to it at http://www.publicrealityradio.org/programs/the-johnnie-tuitel-show/episodes/show-5-jen-walsh
6. Before I became ill I loved to sing. I was in a band and frequented many karaoke hot spots.
7. I am a glutton for reality TV and medical dramas.
8. I love to read, when I don't have double vision:) My favorite author is Robin Cook.
9. I am double jointed and have hyper flexible joints, great for entertaining friends when I was a kid!
10. I love to travel, I have been to Luxumbourg, Germany, Sweden, Jamaica, the Bahamas, St. Thomas, and all over the United States.
Bloggers I would like to pass this award to.
1. avillagein10.blogspot.com by Kelly and Katy on infertility and the amazingly generous gift of surrogacy
2. seaglasss79.wordpress.com by Colleen an amazingly strong young woman battling Pulmonary Hypertension and kicking some butt
3. wendyusuallywanders.wordpress.com Wendy who is living life and battling MG
4. withcourageican.com Lisa, who has faced more than anyone should have to face and came out on top with Corragio! She wrote a book on RA and MG and is an amazing lady
5. ocular-myasthenia.blogspot.com Tom, blogging about ocular MG, he has done a ton of great research on the subject.
6. chubbycheeksthinks.blogspot.com great blog for fun and givaways by a mamablogger
7. rachelesthermgfoundation.org a mom posting about her daughter's battle with MG and she recently started her own foundation.
Thursday, June 17, 2010
I went to my office today...yeay!!
I wish I could say it was to work but at least I got to see the many faces that were a part of every weekday for so long. I was there about an hour to get some things that I have needed to make it easier to work from home. Everyone was so great. I am plum tuckered out tonight though. Our building is HUGE, I mean take four Wal Marts and stick them together huge and my office i smack dab in the middle so my legs are not working so great but my heart is happy.
I really miss being there so much. I am blessed to be able to work from home but it is such a great company, my co workers are like family and I miss them. Thank goodness I brought the walker or I would probably be in the hospital again but it was so worth it.
All things considered I am doing quite well today. I think the IVIG had a delayed reaction this go around so the breathing difficulty I had at the beginning of the week has subsided and the fatigue has calmed down.
On the kid front, John finally met some neighbor kids and is having a blast. I am hearing "I'm bored" way less. On the negative side, there are strange children in and out of my house and boys like to eat so the pantry runneth bare. Thank goodness I get paid tomorrow:)
Over and out.
I really miss being there so much. I am blessed to be able to work from home but it is such a great company, my co workers are like family and I miss them. Thank goodness I brought the walker or I would probably be in the hospital again but it was so worth it.
All things considered I am doing quite well today. I think the IVIG had a delayed reaction this go around so the breathing difficulty I had at the beginning of the week has subsided and the fatigue has calmed down.
On the kid front, John finally met some neighbor kids and is having a blast. I am hearing "I'm bored" way less. On the negative side, there are strange children in and out of my house and boys like to eat so the pantry runneth bare. Thank goodness I get paid tomorrow:)
Over and out.
Monday, June 14, 2010
Radio Interviews, IVIG, Gardening, Naps, Oh MY...
So I didn't' post as promised. The interview, while fun as all get out, was also quite a bit of an energy sucker...note to self, don't schedule radio interviews 2 days pre-IVIG... Anywho, I made it through the interview and it will now air on Wednesday June 23rd at 10AM on WPRR. The best way to listen is to download it for free on iTunes under The Johnnie Tuitel Show. It will be available a couple of days after the air date. We discussed Myasthenia (by the end of the interview both Johnnie and Angie Kay could pronounce it), we discussed "invisible disibilities", and we discussed funny topics, it should be a great show.
IVIG - Went so well that I think I was only awake for about 30 minutes of it. On the flip side, I am still quite tired and my nose is stuffed so I may be catching a bug. I just have absolutely no oomph, no get up and go, and my eyes are having less and less normal periods which is really having an effect on driving.
Gardening - Okay so I have a self proclamed "black thumb" however, this year, I have been able to keep 2 house plants alive for more than a week (actually going on 6 months), and my flowers outside not only look good but are growing at an exponential rate. I finally figured out how to dead head. So, I may not be a complete and total tool when it comes to gardening...woo hoo.
Naps - need 'em, love 'em, gotta have 'em. It is a necessary evil when you are weak and tired 24/7. I never, NEVER used to nap, now I am napping almost daily. Okay, Update-complete.
Out - Jen
IVIG - Went so well that I think I was only awake for about 30 minutes of it. On the flip side, I am still quite tired and my nose is stuffed so I may be catching a bug. I just have absolutely no oomph, no get up and go, and my eyes are having less and less normal periods which is really having an effect on driving.
Gardening - Okay so I have a self proclamed "black thumb" however, this year, I have been able to keep 2 house plants alive for more than a week (actually going on 6 months), and my flowers outside not only look good but are growing at an exponential rate. I finally figured out how to dead head. So, I may not be a complete and total tool when it comes to gardening...woo hoo.
Naps - need 'em, love 'em, gotta have 'em. It is a necessary evil when you are weak and tired 24/7. I never, NEVER used to nap, now I am napping almost daily. Okay, Update-complete.
Out - Jen
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