First thought - What's Happening to me??

[Donna Hart]

OK, here's my story. It was 10 years ago and I was on a business trip to South Carolina. I flew there from where I live (near Philly), rented a car, and went to work. Worked all day, just getting a little tired by late afternoon. But I chalked that up to getting up early, flying, working, etc. But no. I drove back to the hotel, coulld hardly get my legs to carry me to the hotel room. I could hardly move. It was so scary. I thought I might die. So I called the front desk and asked them to get an ambulance. By the time the ambulance arrived, I coulldn't get out of bed by myself and was throwing up. Next thing I know I'm in the ER of some strange hosptal in South Carolina and they are thinking I'm having a heart attack (I was a 50 year ol\ld female). They clung to their heart attack theory and admitted me. Next morning I woke up witrh my husband standing over me in the room. It was very wierd. I could get up by myself but didn't have the strength to do anything once I stood up! And I was sure I wasn't having and didn't have a heart attack. I just wanted to go home to my own doctor. So I called her and she said to just get the tests done that they wanted to do and get out and come home. So I did. They did a cardiac cath- surprise, my heart was fine! So my husband took me home. By then I needed a wheelchair. and was really scared.
I got home and knew something was really wrong. Then I started having trouble breathing. I have asthma too, so I thought maybe it was just anxiety triggering that. But it didn't get better, so we went to the ER. They admitted me there, tested me for everythign they could think of, but not TM. And what did I know at the time? I was having trouble breathing, digesting, walking, bowel problems, and so on. I couldn't stand it, so I asked the doctor if I could just go home. She discharged me. But I was back the next day because the breathing was so bad they thought I had a blood clot in my lung. No, I didn't. but was admitted again. Still no diagnosis. My doctor finally got me to a neuroligist who mostly does research work on rare diseases, and she got the diagnosis right away (after some testing, of course). And she shot me up with IV prednisone. Ah, what a relief. I started feeling better immediately. By this time, I just wanted to lay there with the IV dripping into my arm and relax! But- a little side trip here- it was Easter weekend and my kids wanted to bring the eggs and dye to the hospital and get the Easter eggs colored. So they did. And I realized that even though I was feeling better, I couldn't actually do anything. So I just layed there and watched the egg dying and the dye spilling and my kids trying to pretend it was fun doing it in the hospital and my husband worrying and realized I was still really in trouble.
But I got out of there a lot better and went home. I couldn't go up stairs to the bedroom or the bathroom, so I spent about a month on the couch with a port-a-potty (how fun). I could breathe better with stronger drugs, but was unable to lift even a glass. We had to get a paper cupfor me to dring from. All this so far is about 2 months.
Eventually I got upstairs. I could get the the bathroom with a cane, my husband, bless him, brought all the meals up. The physical therapist and nurse came, and I started to think about getting my life back on track.
I had a good job as an AVP at an insurance company, and really was hoping to go back to work. At first I worked part-time from hime via computer, but after 2 months of that, I knew I really needed to get back in the office- I had a lot of people reporting to me that I never saw! So I tried=-I got an electric wheelchair, Para-transit rides, and tried the office. But truly there was no way. I couldn't at that time, even hold my head up all day! So to cut it shour- went the disability route. Applied to social security and got it right away. Applied trhough my job and got that right away too. That seemed like a sign to me that I must really have a not-good ailment!
But truly, being on disability was a Godsend. I'm a better person now than I was then. I've lost my typeA personality and am calmer and happier. No it didn't happen right away, I cried for about a year. And then I started to pick myself up and realize that this is my life and going back to the old life is not an option.
Two years after diagnosis, I started volunteering 2 half days in an office at the hospital. I'm still doing it, have my own office and responsibilities- but I'm still free help, so when I'm too tired or have doctor's appointments or whatever, I can just not go and not feel like I have to take time off or do anything to actually compensate as I would if I had a real job. It's easier and better for my needs. I have an electric wheelchair that I use for transportation, drive very little, since I still don't have the stamina, volunteer at the hospital and also a few hours a week at the library, go to a water aerobicc class that I love and that has made my upper body a lot stronger, and live my life.
I still take prednisone, which recently caused a little crisis. I tried to get off the 6mgs that I'm still taking. But when I got to four mgs., I got so ill I thought I was having another attack of TM, but instead found out the hard way that my adrenal gland had totally quit because it didn;t think it had to supply cortisol to me any more. So now I'm stuck on 10mg of prednisoe- but I feel almost like myself again. I take neurontin for leg nerve pain, pills to make my stomah digest, midodrine to prop up my blood pressure, and glycolax when my bowels cause trouble. I also have a bunch of other immune things - like IgA deficiency, vitiligo, bronchiectasis, diabetes, thyroid trouble - is TM just one more thing .maybe? But here I am, pretty happy and well-adjusted and thanking God things aren't worse. So that's me. I'm very interested in hearing about the rest of you!

[Dedra Ash]

Hi Donna. Thank you for reading my story. Your story is very interesting! Sounds like you have an awesome husband and close/supportive family! Boy - that helps! You sound like you have been very strong and very accepting of all of the "bumps in the road" over the past 10 years! Swimming has been great for me too! And - FYI - CVS stores, and I think Walgreens, has a tea called Smooth Move with Senna in it - I have recently discovered it and it works great to help bowel movements. What a thing to share with strangers!!!!! But, if anyone has discovered anything else that works with any of all of our weird new ways of life - please share it with me! Thank you again Donna - Dedra

[Susan]

Hi Donna,

You went thru quite a lot before the diagnosis. I got TM July of 08 so it's been a little over a year. I am lucky to be walking again. I find I do fall a lot and have injured my foot, my hip and broke my toe all this summer. I was hit hard and fast with TM. One minute standing and the next in bad pain and on the floor. Within an hour couldn't walk at all. I went to Mass. General and they figured it out pretty quickly and put me on an IV. I was able to walk again after 2 days, but not like I used to. I was weak, dragged my right leg and tired quickly. My balance and strength was gone. I went to physical therapy and can now walk and play golf. I have bowel and bladder issues and worked with a pelvic floor specialist at MGH. I drink Metamucal for fiber every day and chase it with Miralax. I am able to go that way and rarely have an accident. It has helped to get me back into the world. I hope this information helps with the bowel problems. It isn't perfect but makes life more comfortable.

Take Care
Sue
Dedra Ash said:

Hi Donna. Thank you for reading my story. Your story is very interesting! Sounds like you have an awesome husband and close/supportive family! Boy - that helps! You sound like you have been very strong and very accepting of all of the "bumps in the road" over the past 10 years! Swimming has been great for me too! And - FYI - CVS stores, and I think Walgreens, has a tea called Smooth Move with Senna in it - I have recently discovered it and it works great to help bowel movements. What a thing to share with strangers!!!!! But, if anyone has discovered anything else that works with any of all of our weird new ways of life - please share it with me! Thank you again Donna - Dedra

[Donna Hart]

Thanks for the bowel help! I'm always open to new ideas.Look at Dedra's reply too - the tea she talks about for bowels. Another good suggestion! I had a lot of balance issues at first too Sue. And I also had foot drop, which lasted quite a while but did eventually get better. And a couple months after I got TM, I broke my foot. Just to add insult to injury in my life at that time! Thanks for sharing your story with me. I'm glad you can play golf. That's great! Take care, Donna.

Susan said:

Hi Donna,

You went thru quite a lot before the diagnosis. I got TM July of 08 so it's been a little over a year. I am lucky to be walking again. I find I do fall a lot and have injured my foot, my hip and broke my toe all this summer. I was hit hard and fast with TM. One minute standing and the next in bad pain and on the floor. Within an hour couldn't walk at all. I went to Mass. General and they figured it out pretty quickly and put me on an IV. I was able to walk again after 2 days, but not like I used to. I was weak, dragged my right leg and tired quickly. My balance and strength was gone. I went to physical therapy and can now walk and play golf. I have bowel and bladder issues and worked with a pelvic floor specialist at MGH. I drink Metamucal for fiber every day and chase it with Miralax. I am able to go that way and rarely have an accident. It has helped to get me back into the world. I hope this information helps with the bowel problems. It isn't perfect but makes life more comfortable.

Take Care
Sue
Dedra Ash said:

Hi Donna. Thank you for reading my story. Your story is very interesting! Sounds like you have an awesome husband and close/supportive family! Boy - that helps! You sound like you have been very strong and very accepting of all of the "bumps in the road" over the past 10 years! Swimming has been great for me too! And - FYI - CVS stores, and I think Walgreens, has a tea called Smooth Move with Senna in it - I have recently discovered it and it works great to help bowel movements. What a thing to share with strangers!!!!! But, if anyone has discovered anything else that works with any of all of our weird new ways of life - please share it with me! Thank you again Donna - Dedra