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!
Jen

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,
Jen

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 nutshell...it 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!

Jen

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

On Holidays with Myasthenia.....

For those of you with Myasthenia, you know why I chose this photo. For those of you without, it is to give you a sense of what it feels like to walk in our shoes all day every day. It is like walking against the wind. Perhaps that gives a better perspective as to why we look normal in the morning and by evening everyone around us is telling us to "sit down" and asking "do you need help?" and "are you alright?"

These are all kind questions and we get used to them, however with someone battling the same roller coaster day in and day out it can be overwhelming in large quantities. I was always one to like the spotlight, I used to sing onstage for crowds, I enjoy public speaking...yes I am strange like that and no I don't claim to have the "moves like Jagger." But back to my point, while concern is kind it is not the type of attention I like or am comfortable with.

So this is how yesterday went for me:
6:30AM - 3:00PM - Worked, not too busy but enough to not be boring
4:30PM - ate a fine dinner prepared by my hubby and kids (I helped with the bisquits)
5:30PM - feeling pretty weak but not wanting to let anyone down went to my in-laws with Cindy
6:30PM - started feeling the dreaded full on weakness wave (the fact that I couldn't speak louder than a whisper by 5:00 should have been a clue but I am still hard headed an yes a bit in denial)
7:00PM - asked for a ride home...at this point I couldn't lift either foot off the ground, was full on slurring my speech, and one eye was half open...this is when the barrage of concerned questions came about and also the time I just wanted to crawl into my snail shell and hide.
7:30PM - Home...safe...recliner...life is good (or the same as it was yesterday)

Which brings me to the next topic I wanted to cover: I have lost the ability to assess myself.

As I have become more ill, I have avoided more outings, I am less social (well in the physical sense, I certainly make up for that on the phone and online) but I used to go out with friends all the time. So I am home and I accept my limitations and do what I can when I can, then I rest and I don't really take stock in how/when I am feeling weak like I did at the beginning of this illness. But the reality is (I realized last night in response to said concerned remarks) I am a wreck every single night. There isn't one day that goes by that I don't have double vision in the evening, lose the ability to speak like myself, lose the ability to lift things heavier than a water bottle and sometimes that too.

I am writing this post because last time I saw my neuro I told him things are going well, they are the same. Well they really aren't if I am honest. I am getting worse, slowly but surely, and I am just sitting here accepting it. Well I tell you what, I am not ready to give up the fight...I still have a chance at remission and gosh darnit I am going to fight for one.

So family and friends, that is what a Holiday is like with Myasthenia

I feel like George Bailey..

While my life with illness has been an open book on my blog I am very secretive when it comes to my family and my finances. At any rate, things have gotten very difficult at home (gulp, can you hear me swallowing my pride), with surprise dental issues with the kids and more (yes more) hospital visits from me, and a surprise increase in our monthly mortgage...well we hit a wall.

My sister, my amazing sister, set up a fundraising page for my family and I am just overwhelmed by her kindness, the kindness of strangers, and of family and friends. I think we just might make it through the holiday season.

Pat has been amazing, cleaning, cooking, going to school full time, and being a full time chauffeur to the kids and myself (with all my doctor's appointments I don't know how he has time to study or sleep).

Since it is Thanksgiving week I just wanted to say how thankful I am for my wonderful family, friends, family of "Snowflakes", doctors who love and listen to me, and in thankful memory of the most wonderful mom a girl could ever ask for. She was only 47 years old when cancer took her from us. So, thank you Lord for surrounding me with good, caring, and loving people!

Here is the link my sister set up, her words make me tear up everytime I read them:
http://www.giveforward.com/mgjensupporters

Love,
Jen

Sound off on Insurance companies

First, I must say I am thankful to have insurance, it is true, I am. However, I do not think they realize the extent to which I loathe their practices. Nor am I naive enough to think they care what I think, but this is my sounding board so I will speak my truth and be done with it...get it off my chest because I am not a happy camper at the moment.

For those of you with serious chronic illnesses you are aware that managing your insurance/doctor's appointments/referrals/prescriptions/etc...is a Full Time Job. A job without pay, a job that only creates stress and awe at the purposeful lack of common sense and ignorance coming from the decision makers. What never ceases to amaze me however is the fact that I know they are trying to reduce their spend but while they dilly dally over comparatively inexpensive medication approvals or appointment approvals, I end up hospitalized and another $15,000 - $25,000 is in the hole for the insurance company...all which could have been prevented mind you if they listened to my doctor in the first place.

This weeks fun all began with a change in my IVIG dose and frequency. Instead of 40 grams every 10 days my doctor wants me back on 30 grams every 7 days. given the fact that this worked well in the past and I have been in the hospital 2 times in the last 30 days it is the best that can be done to control my illness. So...last week, my home infusion company called to let me know they would send my nurse since I already have the medication and hopefully the authorization would be through by the time I needed my 2nd treatment.

I coordinated with my nurse and everything was set for 1:30pm yesterday. Now, you have to understand what is involved in prepping for a treatment. Every time I have IVIG I take benedryl and pain medicine an hour before and I use lidocaine to numb the skin covering my port. This leaves me very drowsy and I am allergic to all tape known to mankind so I also wind up a bit itchy from covering the lidocaine.

Sometimes my nurse runs late because of another patient so I patiently awaited her arrival...that is until about 2:15pm when I started nodding off. Not wanting to be rude I waited until 3pm, at this point I was ticked that she hadn't called but thought, maybe something was wrong. When she answered she was surprised that no one had called me...they decided not to do my treatment until insurance approved my change in treatment...it is a lower dose so it is actually the same price as what they approved previously.

So I called my doctor, the pharmaceutical company, my infusion company, and my insurance company. By 5pm they agreed to give me my treatment so I don't end up in the hospital but now I have one week for the insurance company to come through and approve treatment or I am left hanging. I don't have the energy to call my insurance company today, I am already weak and I am worried the stress will make me sicker so...I will call tomorrow..yikes! And that is today's 2 cents.