Friday, December 30, 2011

Reflections on 2011

Wow, what a year. When I think back I can't believe that this time last year I was unemployed and battling insurance companies to have my thymectomy. Compared to the battles fought and heartache I went through I would say this year is much better.

This year as the New Year approaches I am sitting comfortably at home with an amazing new employer, I have made friends across the continent and globe for that matter that mean so much to me and I would not know were it not for this illness, I have recently been elected to our local Myasthenia Gravis Foundation Chapter's Board of Director's, I won The Coraggio Award at the Annual Myasthenia Foundation's meeting, I survived my thymectomy and while I spent too much time in hospitals this summer it has been months since I have had a crisis. I was also honored to be asked to speak to a group of 200 pre-med students at Michigan State University and was interviewed on the radio. For not getting around much I sure made a footprint!

This year I am so thankful for my Doctor's who believe in me and trust me and work with me to be as healthy as I can. My physical therapist and therapist who push me just far enough to keep my physical and mental strength at their peak. My family, friends, and even complete strangers who have helped with rides, companionship, finances we are So Blessed! And I can't wait to pay it forward!

Looking forward my hope is to heal more, to go into remission, should that not be in my cards then I wish for my Illness to continue to be a vessel. To educate, comfort, and support others going through this. My biggest wish for this year is for Pat to successfully complete his Software Engineering program at Ferris. He so wants this and I am so proud of how far he has come.

To all of my readers, thank you for your love, your support, and your prayers. A very Happy Healthy New Year to you all!

Thursday, December 29, 2011

Forgiving myself for things I cannot control.

In the spirit of the New Year I am going to try to get out of my funk and get over myself. I am who I am and I cannot help the fact that I have this disease, but I can choose how to respond to it. More times than not I find myself apologizing for the fact that I cannot walk or talk or go out or see. Is that how I would treat someone else with a severe illness, expect an apology? Goodness no! and yet I find myself saying I am sorry everyday, in fact sometimes I weep.

You see, not too long ago I was the go to girl, the party planner, the social butterfly, the Yes I Can Woman. Now I cannot drive, many days I cannot speak, sometimes I can't even lift my glass to take a sip of water, and that is if I can swallow. But the crazy part of this illness, called Myasthenia Gravis, is that there are parts of every day where I can do most things. As long as I don't overdo it I can make it through one day at a time.

I am not saying that 2012 will not have it's share of hospital stays and treatment reactions. What I am saying is I will accept myself for who I am. I will not apologize. I will love myself and I will give what I can. That is all I can do and I am darn proud of how far I have come.

Each of you are special and each of you still has something to learn and to offer. Embrace it! You mean something! You are not your disease!

Love and Peace,

Tuesday, December 27, 2011

My dirty little secret, exposed..

Oh the humanity!

While it is no secret that I have Myasthenia Gravis (due to the blogs, vlogs, being on the board, etc...) I don't like people to see me symptomatic. In part because I don't like having to explain over and over again, and in part because I do not want those nearest and dearest to me to see how much I truly endure. If I time it right, they just think I have a neuromuscular illness they can't pronounce that sometimes makes my eyes and mouth look funny and at times makes my foot drag.

Well here are the last two weeks in a was "get over yourself Jen" bootcamp. 1.5 weeks ago, went shopping with Pat and fell out of the electric shopping cart, yes I fell out of the cart while reaching for benedryl (my IVIG premed). I was mortified, I am really much weaker than I thought.

This past weekend we had my brother and sister in law stay with us for Christmas. All went well with me going to sleep before the symptoms hit full force until the last night. I got so bad I was choking on my saliva, couldn't walk straight, and Pat went to bed before me so they had to help me get to bed and saw the dreaded bi-pap that I hide.

I almost ended up at the hospital again as I stopped breathing multiple times but pat was able to wake me enough to prompt the machine to breathe for me. So now what? I don't know, working today, seems foolish but we need the income. For those of you who pray, I could use some.

Love, health, and happiness to you and yours as we approach this new year!


Friday, December 2, 2011

Up, Down, Round, and Round

So the rollercoaster continues. This week certainly had it's shares of ups and downs. I thought I was headed for a full blown crisis on Tuesday. Thankfully the respiratory therapist and my doctor agreed that changing my breathing machine would help and I avoided another lengthy hospital stay.

I have had quite a bit more pain as well, that seems to happen each time I experience a flare. By the end of the day my wrists just ache and shake from typing all day. My neck hurts and is too hard to lift. Walking...out of the question most of the evening, my feet just drag. I can handle all that as rotten as it sounds but the breathing and swallowing issues have to go!

I am having a hard time swallowing the pills that make me strong enough to swallow pills, how ironic is that? I feel like there is a pile of bricks on my chest. I just want to breathe.

Where are the ups? Oh yes, I had a wonderful week with my new found family of flakes, much laughter. Even through the ups and downs of this wretched disease, I have a caring and understanding employer who allows me to rest and regain my strength. I continue to be overwhelmed daily by the donations...thank you so much! I am truly blessed..Peace and Happiness to you and yours this 1st December weekend - Jen