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

Friday, November 25, 2011

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 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 - 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

Monday, November 21, 2011

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:


Wednesday, August 24, 2011

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/ 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 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.

Monday, August 22, 2011

On out of Club Med...

Well, those of you who know me are aware that big changes have been happening in my life. First, at about the same exact time I started a new job working from home, I had my first appointment with my neuro at U of M since my surgery. At that time I had been off work for 9 months and had 3 months under my belt since my surgery. I was feeling better than I had in a long time. I still struggled with daily weakness but the length and severeity was reduced and I hadn't had a breathing crisis in months. Compared to an average of 4 times a year that is a milestone.

At any rate, my neuro decided to space my IVIG to every 10 days and reduce my predinsone as well. I thought !wonderful! but was foolish in not taking into account what a life changer working 40 hours a week was going to be. I thought "hey, you used to carry an oxygen tank and had no meds, you can certainly work from home feeling as good as you do now" Well I am a bullheaded 10% Sicilian and if I set my mind to something that is that:)

It took about 60 days and me dragging my foot, slurring my speech, tired as all get out to end up in the hospital with a full fledged crisis. For those of you who don't know what a myasthenic crisis is, it is when the muscles used for breathing and swallowing are too weak to work. I was aspirating on my own saliva and could not catch my breath. My husband saved my life because it all happened while I was sleeping. Not a good way to start the day.

Of course when I was feeling stronger and could speak my doctor's at the hospital asked what I thought set off the crisis. I said...must be the heat, and we had some car trouble, and my meds have changed. Not once did I admit that I was not strong enough to make it through a full workday...that would go against my very nature. In my head I am superwoman but in my body I am gumby...or Mr. Bill, depends on the day!

So I tried to go right back to work but that was stupid, I was seeing double and sounded like a drunk sailor. I ended up taking a week off to rest and felt better. I was back on all of two weeks when the same thing happened. BAM! In my sleep, couldn't breathe, Pat waking me up by shaking me and telling me to breathe.

This time I have to say I saw it coming. Every day by six I had a hard time catching my breath, talking, reading, thinking. By eight pm (the time my shift ends) I felt like I had sand bags on my shoulders and as if I were walking through quicksand. I called my neuro and asked if I could go back to weekly IVIG but he wanted to try upping the prednisone first. I did that but obviously it was not enough. I ended up in Club Med a 2nd time.

I have to say in all the years since diagnosis, I have always had crises during my waking hours and could always see them coming. Of course I now know I let it get too far and lost how in tune I was with my symptoms. So, I will now be back on the weekly IVIG and the higher prednisone dose until I see my neuro in October. My local neuro will see me next week to go over what happened and discuss my work situation.

So here I sit, contemplating what is the best thing to do. If anyone has the magic answer I would love to hear it. Currently I am back from a week off and am putting in 1/2 days. I really want to work but I know that want is not always should. I tow a fine line between doing too much and doing so little I start to go bonkers so if you have any pearls of wisdom please keep that in mind. I am giving it the third round of the old college try but I want to be here for my kids and what I was doing before put that in jeapordy...jen...signing out for now!

Monday, April 18, 2011

Patients, my dears...patience

As anyone with MG or caring for a loved one with MG knows, Patience is crucial, though quite possibly the most frustrating parts of the illness! Ask me the most difficult aspect on a bad flare up day or worse during a crisis and you might get another answer but most days it is patience.

Patience for test results and with skeptical or downright mean docs in the beginning.

Patience with your body daily.

Patience with your meds to work.

Patience to see if your thymectomy put you in remission..aha, you knew I was going somewhere with this;)

While I am not there yet, I am happy to report that I am healed up quite well with three tiny scars to boot. A little scar tissue pain and neuropathy type pain from time to time but nothing awful. I am still struggling with daily symptoms but I am just trucking along like usual trying to live as normal a life as possible.

I am excited for our local MG Chapter's annual fundraiser..the 5k in May. I will post a link here to donate for all who are interested. As you know if you are reading this blog, it is a very worthy, Jen

Thursday, March 3, 2011

To hell and back, My Thymectomy...

Yes, it was the scariest hospital stay of my life, and I have had some doozies! I am battling a night of insomnia and thought my faithful readers deserved an update as to why it has be so long since I have posted.

WARNING - This is a long and graphic story but I think the help it may give others outweighs the disturbance it may cause so be warned before reading.

CONFESSION - I am too weak and tired to type this out so I am cut and pasting from my post in my MG support group, but the story doesn't change so here goes...

Thank you all for the well wishes. There were a few errors at the hospital
so I think my story is not the norm but I am an honest gal and hopefully my
story will help others avoid difficulty. With that said, I thought all my
bases were covered prior to surgery. I met with the neurologist and he sent
orders for IV mestinon during the procedure, 24 hours of ICU observation
following surgery, and a neuro and respiratory therapists following me for
the duration of my stay. Here is what really happened.

Day 1 - arrived at 5:30, took my last oral mestinon, spoke with the surgeon
and anesthesiologist and went to surgery at 7am. At 12 noon, I opened one
eye in ICU, the other would not open and I could not speak well at all, the
anesthesiologist and nurse were hovering over me very concerned and I
motioned for them to come close. I was able to get out "put mestinon under
tongue" before I lost the ability to speak. The nurse ran and came back in
a flash with the mestinon. 15 minutes later I could speak. They were
floored by how quickly I turned around. I asked about the IV mestinon and
the anesthesiologist said it wasn't in the orders....urgh!!!

Then they sent me to a regular recovery room on the heart center floor. My
pain was well managed through the epidural. Oh, I had the Da Vinci surgery
by the way.

Day 2 - Had a bad nurse who didn't come on time for my mestinon. The
second time this happened I was headed for crisis and again the mestinon had
to go under my toungue. I was pretty loopy from the pain meds and was
having a hard time assessing my own condition. When the PA from the
surgeon's office came in I inquired about pex and she didn't know what I was
talking about. I asked her to check with the surgeon. The rest of the
evening was uneventful. I even took a few walks. As far as the spirometer
(the breathing tube to keep the lungs healthy) they told me to do what I
could tolerate which was 2 inhales about 4 to 5 times a day.

Day 3 - Really feeling weak in my whole body. I saw the PA that morning and
said I am really concerned and would like to see a neuro. She said she
would relay this to the doctor. 4 hours later I sounded drunk and my eyes
were really going. I told my nurse I was getting very close to a full blown
crisis and something needed to be done.

She checked my chart and saw that the PA typed "pt looks stable, no signs of
weakness, no need to consult neuro" Well I started crying, terrified for my
life, the nurse was ticked, and so was my sister. My sister paged my neuro
at the University and the nurse paged my local neuro. My University neuro called my room and I told him what was going on. He was livid and took the hospital
neuro's phone number and said if he didn't speak with him w/in the hour I
would be airlifted to Ann Arbor.

Before I had the chance to hear back my throat closed off completely and I
could not swallow. They were suctioning my secretions while I communicated
on paper with one working hand and one barely open eye. They put a mestinon
under my tongue and 45 minutes later my throat opened, then the neuro ran in
the room. He was at the other hospital and could not believe how long it
took for someone to contact him. He brought the PA in and chastised her in
front of me. They brought respiratory in and my NIF (diaphragm strength) was 20 (one point above the protocol to ventilate). I also couldn't move my head at all.

The neuro said they were moving me to ICU and would start PEX asap. He said
if I went any further downhill I would be put into a coma and vented. When
I arrived at ICU they said my hemoglobin was 6 and that was too low for
PEX. I had a blood transfusion and they started IVIG.

Days 4 - 5 -
Stayed in ICU and NIF increased to 25, Hemoglobin rose to 9. Four more days
of IVIG scheduled.

Day 6 -
Moved to regular room, NIF at 30, Hemoglobin still 9. They ordered another

Day 7 -
Potassium low, had to drink potassium and developed thrush from the
antibiotics. Feeling much stronger but still 50% of the strength that I
entered the hospital with.

Day 8 -
All numbers normal, got to go home!!! Will have visiting nurses for a
month....boy am I tired!

The pain is getting better every day. My thymus was normal size but
abnormal pathology - Follicular hyperplasia...yeay!!! My neuro says this
gives me a better shot at remission and I will hold on to that hope.

All in all I am thankful I had the surgery but know my neuro was right in
recommending I have surgery at his hospital and not here where I live.

If you are still reading this, thank you!