60 to 0 and Back Again.

I was one class away from my degree in network administration.  I was employed (they want me back and have arranged minimal work from home.) Then I went half numb while at work. Everything on the right was numb, right down the middle.  I was even half-assed.  It was weird.  I was at work, doing alarm dispatch and had to call my boss to relieve me and a friend to take me into the hospital.

My first thought was a stroke.  Theirs was too.  After the MRI, the diagnosis came back.  Mild demyelinating disease.

Over the next week I got worse and worse.  I ended up in the hosp for 15 days, not swallowing, talking clearly or walking.  I lost fifteen pounds on the incredibly disgusting hospital babyfood diet.   I got better and went home after rehab.

I arrived home to a very poopy dog and had to stagger to the sink and put her in it and clean her up.  It was awful.  There was another horrible smell too.  I called friends who came to help. 

Did I mention that I care for my stepson who is a special needs child. He is about 12 yrs old at 28 yrs old.  He had not noticed the dogs mess tho he petted her.  We searched and searched and finally found the rest of the smell.

My stepson had tried to cook a brisket.  Evidently he was sick of the nukable and just add water things friends brought him.  He got creative.  He DID unwrap it (thank god) and sprinkled the seasonings on the pan and laid the frozen hunk on it and then cooked it till it was black on the outside and raw on the inside still.  He ate the outside off and then tossed it UNDER the garbage bag in the can.  After a week or so of hot weather, he still didn't notice the smell.  Once we removed that and opened all the windows and doors and Ousted the entire house. It got livable. 

I was out of the hospital for a week staggering about taking care of the dog.  I have always done animal rescue, usually exotics, but this was a dog from Old Dog Haven.  She was on the way out and with walker and my stepson helping, she was in and out of the hospital.   The idiot ate a ROCK.  She didn't make it long after her surgery and almost as soon as she died, I was back in the slammer, oh, excuse me HOSPITAL again.  Let's just say that I am too much of an anarchist to adopt well to an institutional lifestyle.

I finally got a permanent neurologist.  She started me on Rebif and its been all uphill from there.  I am staying out of the hospital since I started it, and at the six month MRI, they had greatly shrunk or vanished.  I had over 20 very active in bad places ones when I started Rebif.

SSI Disability came thru on the first try.  I spent a fun time doing the welfare thing when I couldn't talk or write.  When I went back in the hosp again, they closed the case so I had to start all over again when I got out.  I went down in a wheelchair and sat there for five hours till I could get seen.  I had ALL the paperwork and it finally went thru.

I had GREAT supportive friends and my Mom who paid my bills and helped out till I could get things leveled out again.  They came out of the woodwork.  A friend brought me a memory foam pillow because my neck was a mess.  She brought children's books with big print and light enough for my hands to hold. They were good ones too.  Old Dog Haven got me groceries when I came home.  Delivered.  It was very nice of them.

My short term memory is not really there any more.  They are giving me my degree, but I can't remember much I learned in school.  I am in Phi Theta Kappa and on the National Deans List.  I still have a years worth of tuition, good for five more years. (scholarship)  But I putter thru the chores bit by bit.  I can at least stand long enough to do the dishes most days.  I just keep at things till they are done.  Some days I feel like a fraud for being on disability and some days I realize that I really am disabled.  Like waking up to find that this crazy dream is real.  One day at a time.  I am pretty happy.  Its not can I or not.  It is HOW can I.  There are very few can'ts.  Just creative solutions.

triara triara
8 Responses Apr 11, 2007

hang tough, if you are relapsing remitting stage, you will get better.

man, this world is so lame.<br />
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people born into a malnutritioned world are destined to get sick and the only cure the system provides is a hospital without great solutions. <br />
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im sorry to hear of your struggles. i hope you can figure out something to make you feel better in such a horrible mess.

Everytime I read the experiences from MS sufferers, I get really sad. I was a nurse aide in college and most of my patients were elderly but on occasion I would get someone younger. One day, I was assigned a 40+ year old woman who had 2 teenage kids and a MS diagnosis but her decline was rapid and so sad. They had to live with her parents due to her condition and I saw the many pictures of the life she once led and the horror she was currently living. Then I met Jerry. He was 19 and very handsome. He is an older brother to my son's friends. Jerry has MS. He is now 25 and is confined to a wheelchair and his home, is in extreme pain and is not living the life a bright, handsome, funny young man of 25 should be living. <br />
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Years ago I saw this special about "the bee lady". A woman who had MS and began treating herself with bee venom with startling great success. Much research has been done since that special and her website is still up. Many articles have been written about her and BVT (bee venom therapy)- it was a tv show I will probably never forget and any chance I get I like to share it because western medicine does not have all the answers especially when they are so closed to alternative, natural healing. <br />
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I believe the relief from all that ails us can be found on this earth- we just must be open to it. I pray for you all. Good health, love and peace. If the info I've shared helps one person, then I did good today. <br />
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Peace upon you all!

Thank you all for your nice comments. I just got back from the neurologist today telling me that I have no new active lesions, so that is good. What is challenging is that I have been having more muscle spasticity issues. 360 degree charley horse in the thighs. One that cant be stretched out. It kind of freezes me up wherever I am and whatever I am doing. It passes after a bit. I cuss a lot. It helps. It isnt too bad as long as I sit very still and dont try to move the leg.<br />
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On the good side, most of the time I don't hurt. I am just really really tired and have weak arms and legs. I get creative about doing things. I container garden. I break chores into steps that I can rest between. It all gets done eventually. The dirty dishes and dirty clothes have yet to grow legs and run away because I am neglectful. (I wish).

I meant to add something about the short term memory but then of course I forgot! It is very common to have short term memory with MS. I use a lot of post-its. Someone tells me something that I need to do or remember, I write it on a post it and put it by the phone, computer or on my dresser. Otherwise, I will never remember. As for names, unless I see the person regularly, I don't remember them. I called our neighbor Susan quite a bit, until my husband heard me one day and told me her name was Sandra!

I have MS as well. Diagnosed 3 years ago on my husband's birthday. Mine is relaspse, remitting. They guess that I had it actively since 2001 but didn't diagnose it till 2006. Strange. I've been on Avonex and I can't stand my weekly shot but I know it helps. Things will get better. Try this website for some additional support: http://www.thisisms.com I read about it in one of the MS magazines. If you aren't getting the MS magazines for free yet, go to the National MS Society website and sign up. They have a lot of useful information about how to deal with the attacks and talk about the new and upcoming medications (pills are coming--wooo hoo--can't wait to get rid of the weekly shot).<br />
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I wish you luck!

Thank you so much for your story. Very inspirational.

I am very touched by your story. I just found this randomly. I don't mean to seem aggressive or condescending or anything of that nature, but how come your special needs son was home alone to make this mess with the hamburger and the dog? He was there by himself for 2 weeks? How did the dog get fed? Sorry I know these are probably not very important questions but I am just really curious. <br />
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More importantly, I am glad that you are recovereing or have recovered and that you seem to be doing well. <br />
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I don't even know you but already I care about you. I hope maybe you can remember that.