Friday, December 14, 2007

This is from my friend Billie-she needs some support

Hi all,
I have an internet friend, whom I have never met in person, but I have gotten to know through blogging. Actually, we met in a diabetes chat room, but she has always been very kind and supportive. Today, I received an e-mail from her saying she is going to be admitted to the hospital tomorrow and I thought that some of you are such kind people, maybe you would stop by her page and wish her well. The following is her blog address, I don't know how to shorten it so here is the long version:

http://andlifegoesononedayonestepatatime.blogspot.com/

Anyway, here is her first post, I copied and pasted it. Her name is Billie and I think it would be cool to help support her. The internet is a fascinating place. People who you have never met and probably never will can touch your heart. :)
Cindy

FROM BILLIE'S PAGE: Now what do I do? Just where do I start? Usually the beginning is a very good place to start, but as I search, I’m just not sure where that is.

Got it all done, and now cannot get it published. Oh me, oh my. Simplify. That's what I need to do. Simplify. Let's try that

Myasthenia Gravis. It is for sure we cannot go much further until you, too, know what it is, how it affects me, and what in the world is it doing here? This blog is supposed to be about recalling and telling of events throughout the past sixty-five years of my life that I want to pass along, day one to the current day. Sometimes day one is clearer than today. MG is a rare, incurable, autoimmune, neuromuscular disease. It can affect any voluntary muscle of the body, at any time, to any degree, in all races, both genders, and at any age…… hmmm alive, you are eligible. *s* Common symptoms can include: Drooping eyelid(s) ( Ptosis ), double vision ( Diplopia ) and/or blurred vision, slurred speech, difficulty chewing and swallowing ( Dysphagia ), weakness in the arms and legs, chronic muscle fatigue, difficulty breathing.

One of the treatments for MG is the IVIg. Intravenous gamma globulin coming anywhere from 3,000 to 10,000 blood donors. I have been receiving a treatment every four weeks until this upcoming treatment which will have been two months, and I am more than ready to get that drip started this Saturday, December 15th. A treatment consists of an infusion for a period of three days in the hospital. Now, this is my treatment plan; it is different for MG patient. The last time we talked to the neurologist he said he thought he was going to stretch it out to four days, and at a slower drip rate because of the side effects.

This blog is to involve you in my daily journey toward reaching for remission of my Myasthenia Gravis. Friends. It is 1:30 a.m. and as I was reading through this, it dawned on me that is what I am looking for…….. friends to go along with me, talk with me, listen to me, just whatever. This is a crazy disease, changing as frequently as within an hour, especially within a day. Two good days in succession can be reason to rejoice! I found a forum in the UK, but though it feeds me with knowledge, I find I need people to just talk to. I am nervous about “telling it all” to you, but I am determined to try. The good is easy. The bad, no, for I don’t think anyone wants to hear my “complaints”. This will be facts, and my interpretation of things happening with me as they relate to MG. One thing I am afraid of doing, and that is talking too much! This is my world at the moment, and it is different from most other’s world (don’t we each have our own world? :). Myasthenia affects approximately 20/100,000 people, all to varying degrees. I have no one to talk to; my laptop is my contact with the outside world, so when I have an audience I tend to become a blabber mouth. At least you can click on the little red “x” and shut me up if you get tired of hearing me. LOL I *do* hope you will hang around, though, and as I move along day to day, I hope you learn more and more about this hideous disease. We need people to learn about it, and we need a cure! Goodness, we could even use some more medicines developed for MG When I started going to the hospital for the IVIg treatments even the nurses were not familiar with it, and not very familiar with the IVIg treatment itself. I invite you to ask questions. What I do not know, I will go looking for the answers. Next week I will be in the hospital so I can ask my doctors whatever is needed.

I am in a hospital bed at home, and use a wheelchair when I go out. Extreme fatigue and weakness are a major part of MG; sleep is an excellent medicine for it. Therefore, I sleep a lot, much more than I like because I am used to being a very active person, and feel sleeping a lot is a waste of time. I see so much around me that I would love to be doing. It is only recently that I have regained my ability to type.

The use of the affected muscles causes them to weaken, in some cases to non-use. My eyes are most notably affected when I am fatigued, the muscles unable to hold the eyelids open enough to see clearly. I have 20/20 vision, but the lids partially cover my pupil, making what I can see appear very hazy. Sometimes I tape my lids up to be able to read my computer or a book. This is improving with the IVIg treatments, though, and one way I can tell I am definitely ready for my next treatment. THIS is my road to remission! It is what I am going to be sharing here, hopefully every day. Occasionally MG knocks me low and out for a day, but once I get the blog going, I *think* I can add at least a note each day, but one thing I have learned since having this disease is not to make promises. We often have had to cancel doctor appointments just hours before because I would not be able to get out of bed to dress and make the trip.


This disease involves my husband Jim 24 hours a day. He only leaves the house for short errands. I’m not supposed to be up and about without someone here because of my tendency to fall. Sometimes he must actually hold me as I walk; other times I can hold on to things as I walk along, but I cannot walk unassisted by some means. Overall, since my last IVIg I think my ability to walk alone has improved. This also means that Jim must do all the cooking and washing. The cooking has been a real challenge for him since I am also diabetic, and we must count carbohydrates because I use an insulin pump. That means that some of the things we were used to eating – nope, no more. Things that are quick and easy – nope, usually. Labels, labels, labels. He has learned to read labels! I try to give him ideas from my bed, but you know, that can sound like butting in, being bossy sometimes. The kitchen had been my domain for forty years, and it has been a hard thing to give up.


There has been much I have had to give up, making a true 180 degree turn in areas of my life, and it has not been the easiest thing to do. Jim thinks I've been in denial of the disease, and am just now facing reality. Whatever it is, I need to form a friendship, support base because I want to fight this into REMISSION, and I guess what I'm needing is a cheering squad. And, yes, I really *am* going to be telling my stories of the past (present, too). Once established, maybe breaking into separate blogs, but for now, this will have to be the way. I *plan* on posting more than once a day. However, with Myasthenia Gravis, it is difficult to make solid plans. Prior to diagnosis this was a real problem, but now that we know to expect the unexpected, it has helped us relax more. Stress is one of the top reasons to bring on an MG episode! Any kind of stress, especially that of talking to people, sometimes even talking over the internet can stress me out, and I have to take a break, a nap for restoration.

Now you know a little bit about me I am having trouble saving this to post it, so whenever I am successful this first post will appear! Finally!

See you later..... hopefully! ;-)

'Ragdoll' Billie

5 comments:

Grilled Pizza said...

Nice blog Cindy, i popped over and said hello! x

ragdoll said...

Wow! Cindy! This was ever so sweet of you. I am so anxious to meet others. I knew quite a few back in the days of the webring but haven't been involved with that in a long time now. There is so much about life that we do not know to appreciate it until it is taken from us.

Looking forward to some great days around the blog world.

Billie
http://andlifegoesononedayonestepatatime.blogspot.com/

Kitty said...

Hello Billie! *waves* ... welcome to the world of blogging. I'm sure you'll have fun - the people 'here' are fabulous.

Look after yourself :-) x

Amy said...

cindy - thanks for the insight with respect to this disease. i had a relative who was improperly diagnosed with this. lucky for her she does not have it. it's one of those things that most people don't know about unless they have or know someone that experiences it.

good luck to billie. i will be thinking of you and will pop by your blog.

take care!

fourcastnstyle said...

Hi Billie!!! Welcome!!!