Monday, June 22, 2015

Unhappy Anniversary!

How do you mark an anniversary you'd rather forget?

Five years ago this week my life as I knew it changed forever. It was a week that would lead me down the path to chronic, incurable illness, to a life with Myasthenia Gravis!

When a life is changed because of illness or an accident one can't help but remember. Some celebrate a new chance at life, while some reflect on things they have lost, others fall somewhere in between. I'll admit, I find it difficult to celebrate a life with Myasthenia Gravis. But I also don't spend every waking moment feeling sorry for myself.

I've taken a few rides on the whoa is me train, and been the guest of honor at my own pity parties...I don't believe I acquired Myasthenia Gravis for some bigger purpose, to punish me for wrong doings in my life, or to strengthen my faith. People often ask "Why me?", I've thought it for a brief moment, but also thought "Why not me?" I'm no more special than anyone else who has meet with an unfortunate turn of events....

I often replay the words my neurologist said to me in my head "I hope we never have to talk about this again, I want to test you for Myasthenia Gravis!" He and I are still talking about it today. We talk about what muscles aren't working as well as they should, what my new normal has become, and what treatments we have exhausted, or will try in the future, all in the hope of returning some normalcy to this crazy, illness ridden body. 

There are days when I'm too weak to lift a coffee cup, hold my eyes open more than a slit, or have the strength in my hands to press a computer key...I must walk with a cane, use a walker or an electric wheelchair because I can no longer walk more than a short distance... I take medication and IV infusions that only improve my muscle use for a short period of time, and must rely on family and friends to help with some of the most basic things some take for granted. 

I do find some irony in the fact that I have acquired Myasthenia Gravis in the month of June! For those who haven't noticed:
JUNE IS MYASTHENIA GRAVIS AWARENESS MONTH! So please join me in spreading Myasthenia Gravis awareness as part of my Unhappy Anniversary celebration, I can't think of a better gift to receive... 


Monday, June 15, 2015

Can There Be Too Much Awareness?

You may be wondering why I ask...
June is Myasthenia Gravis Awareness Month
MG is a rare, incurable, autoimmune neuromuscular disease. 

It affects the voluntary muscles, it can cause weakness of your arms and legs, blurred or double vision, slurred speech, and impair the ability to chew, swallow, and breath.

If you are a person living with such a disease there can NEVER be too much awareness. You spend every minute of every day hoping someone will find a cure, or a better treatment. You hope and pray that when you post something on social media it gets shared, liked, retweeted, or commented on. You hope a celebrity will take up your cause and agree to be a spokesperson for your disease. You try to dream a challenge that will flood the internet with inspiration, awareness and donations for a cure.

ALL YOU REALLY WANT IS SOMEONE TO PAY ATTENTION TO YOUR DISEASE!

So PLEASE don't ignore that post, tweet or video, someone's life may depend on it...
Someday it might be YOUR life, or that of YOUR CHILD...

If you would like learn more visit
The Myasthenia Gravis Foundation of America
www.myasthenia.org

or follow #IhaveheardofMG & #stompoutMG on twitter.com


Thursday, November 20, 2014

Liquid Lightening

Today a brief lesson about Intravenous Immunoglobulin Therapy or IVIG for short...

IVIG is a blood product created from the antibodies of approximately 10,000 healthy blood donors. Plasma is screened for diseases like Hepatitis, HIV, and many others. The effects of the treatment vary from person to person, and can last from a few weeks to a few months. IVIG is used to treat four major disease categories, they include primary immune deficiencies, acute infection, and autoimmune diseases such as Myasthenia Gravis.

Infusions are done in hospitals, infusion centers, or in the comfort of ones home. Where you are infused will depend on the type of medical insurance you have, and what they will or will not cover.
The amount of medication you receive is based on weight and medical condition. The time it takes to infuse is based on your doctors recommendations and your ability to tolerate the administration rate.  

I receive my infusions at home. My medication and supplies are prepared by a specialized pharmacy and delivered to my home prior to my scheduled infusions, they also arrange for the nurses who administer my treatment.

It's very important to be well hydrated, this helps to eliminate or reduce side effects. I start to increase my fluid intake the day before...On the day of infusion I pre-medicate myself with diphenhydramine and acetaminophen. They are used to prevent headaches and rashes, two of the biggest side effects. My nurse starts an IV line, then prepares the medication. A pump is used to deliver the IVIG at a controled rate. Your blood pressure, temperature, and heart rate are monitored frequently during the infusion. IVIG is started at a slow rate of infusion and increased to a comfortable level to reduce the chance of side effects. In my case the infusion lasts about 5 to 6 hours.

There are always complication and side effects to be aware of. They include blood clots, pulmonary edema, kidney disease, aseptic meningitis, and anaphylactic shock. Headache, fever, chills, dizziness, nausea, vomiting, rapid heart rate, and fatigue are the most common side effects. They can be reduced or eliminated by slowing down the infusion rate and increasing fluids.

For some the benefits of IVIG outweigh the risks associated with treatment. In my house we call IVIG "Liquid Lightening" because of the extra strength and energy I get from my treatments. It has helped with my limb weakness, blurred vision, and fatigue. I can rely on my family just a little less to help me do every day things. I enjoy being able to bake. cook, and indulge in my favorite hobbies, even if it's only for short periods. I still nap daily, use a cane for balance, or use a power chair if I need to go to more than one store during a shopping trip. But those are minor inconveniences. My life isn't what it was before Myasthenia Gravis, but I am not going to let it destroy my spirit...

To those who donate blood I want to say THANK YOU  your generosity is appreciated beyond measure, for that I am eternally grateful...

Wednesday, November 12, 2014

It's Been So Long

I must apologize for being away so long...
So much has gone on since my last post.

I was so inspired by other bloggers to share my story, but sadly MG has gotten in the way.

My medical issues have almost completely taken over my life. It was the last thing I had expected. The days are filled with doctors appointments, medical testing, and IVIG infusions. It's like a merry go round, the cycle repeats itself over and over again. I feel like I'm on a treadmill that never stops running...

New health issues have shown themselves...there are more battles ahead, more dragons to slay...
I hope to post several times a week, but will make no promises.

Tomorrow is infusion day, I'll take you along for the ride...see you then!

Monday, July 29, 2013

My Bedroom, My Retreat, My Prison

When you live with Myasthenia Gravis the weather can be your best friend or your worst enemy.


During the recent heatwave the monster reared it's ugly head with a vengeance. My MG affects my limb girdles the most. So I always have weak legs, arms, and shoulders. Some days it's harder to walk then others, it only gets worse as it gets hotter. There are days when a cane is enough support, other times a rollator, most recently I've "upgraded" to a power wheelchair. 

My sister and I needed to run a few errands, so with the heat we decided it was best to use my chair. We decided to go for breakfast, things went downhill from there. Just the few minutes in the heat on the way into the restaurant caused my ptosis to kick in. My arms became so weak I couldn't lift my coffee mug, I had barely enough strength in my hands to hold my fork!  What should have been a pleasant, enjoyable breakfast turned into a freak show. When you body starts to flop and droop and you can almost feed yourself people stare. I've become accustomed to the stares, but it's a feeling that never gets easier.

The AC in the van was my respite, I regained some strength on the way to our next destination. A quick stop at the grocery store proved uneventful. I rolled a few stores away and entered the cell phone store. It was as cold as a meat locker, I could have stayed there all day. Much to my disappointment it was time to return to the inferno outside.  I wheeled up the ramp into the van. I was only in the heat a few minutes, but I could feel the strength in my muscles slip away. My sister helped me get on my seat and get my legs into a good spot, I had turned into a useless rag doll that could hardly keep itself upright...Thank GOD for seat belts!

By this time rest and cool air was what I needed most. I thought my recliner would do the trick, but NOOOOOOO, not today. So into bed I went. I found sanctuary in the comfort of pillows that could be placed just so, providing support for limbs to weak to support themselves. A cool drink in a light weight tumbler with a lid, placed within easy reach. 

My "RETREAT" is full of all the comforts a person with a chronic illness might find useful. Books to read, if you have the strength to hold them, or your ptosis or blurred vision prevents you from seeing clearly. TV, movies or videos are an option, but that too becomes a problem when your vision is impaired. So music has become my "go to" when I am forced to spend time in my "RETREAT". I listen to Pandora, or my playlists on my MP3 player. When you are forced to spend time in bed you want to have all the creature comforts around you.  Unfortunately what was once a "RETREAT" becomes a "PRISON". It takes time for extremely weak muscles to gain strength. You get tired of bed, tired of the walls around you, tired of the ceiling above your head. All you want is the "MG WARDEN" to release you on bail or grant you parole!  But all to often we must serve out our full sentence in our own personal "PRISON" just waiting for the "MG WARDEN" unlock the cell...

So to all my fellow "MG PRISONERS" ...stay cool, rest as much as possible, and ALWAYS FACE MONSTER HEAD ON, and keep a "GET OUT OF JAIL FREE" card handy!









Sunday, February 3, 2013

A Day of Rest...NOT!

For many people Sunday is a day of rest. Some choose to relax in pajama's while reading the paper and doing the NY Times crossword puzzle. Others spend time shopping, racing at a frantic pace from store to store to get the best bargains. While others spend time at a house of worship before enjoying a quiet day with family and friends.

For me it's sort of a mish-mosh of things. I start my Sunday like most days.  I wake to an alarm that is set about a half hour before I need to get out of bed. This allows me time to take medication that gives me strength in my muscles to go about my day. Then and only then can I proceed as others do! If I don't allow myself this time, I have to rely on the help of others before my day really gets started. It's difficult to go from being a caregiver in your professional life, to the person needing assistance and care in your personal life.

I use Sunday to decide what I might want to make for dinner for the week, catch up on laundry, do some light housekeeping, and care for my niece who is also disabled, while my sister is at work. This doesn't always work out. Like many with a chronic illness some days are better than others. Even the best plans must be rearranged to allow for sudden muscle weakness or fatigue when Myasthenia Gravis decides IT is in charge of your body.  The old saying about The Best Laid Plans of Mice and Men is an everyday reality for many of us.

This weeks menu will include Unstuffed Cabbage, Chicken Fried Rice, Vegetable Soup, and some other undecided selections. I've chopped and peeled to my hearts content. All that remains is to stir fry the Chicken Fried Rice.  The aromas that have filled my house today are mouth watering to say the least...

I think a nap is in order, and perhaps I will "tackle"some treats for "The Big Game" or it will be Tea & Scones to enjoy while watching "Downton Abbey"...better not plan too far ahead!

Enjoy your day, no matter what you have planned...Remember even a bad day can be looked upon as a blessing...you never know what tomorrow will bring so make every moment count...

Tuesday, January 29, 2013

Goodbye Old Friend...

The other day I had to say goodbye to an old friend...

To some this will sound silly, but to others it will make perfect sense. After many years of faithful service my trusty Kuhn Rikon vegetable peeler has fallen apart...

This wasn't just ANY peeler, it was one of my first purchases from a gourmet cooking store...I paid more than anyone should EVER pay for a peeler.  It was made in Switzerland and could only be purchased at Williams Sonoma via catalog or in the store...this was long BEFORE the Internet and Amazon.com days.

It was one of the first U shaped peelers available in  the USA, she was as sharp as could be and felt great in your hands.  No old fashioned swivel peeler could compare.  I could peel at the speed of light!

As someone with a neuro-muscular disease replacing her has become an arduous task...There are so many things to consider when you have weak hands...

Not just any peeler will do. It must fit in your hand just so, the handle can't be too bulky, but can't be too thin either...A soft grip is easier to hold than a hard plastic grip. ...will it make your hand tired when you use it, will it slip and cause you to cut yourself, will it withstand being dropped on the floor and get run over with a walker or powerchair?
So will it be a new Kuh Rikon, an OXO Good Grips, or a Kitchen Aid...only time will tell