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

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...

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!

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!

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...

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



The Face Of Myasthenia, When the MONSTER Strikes

Sorry I haven't posted... 

There was so much I wanted to say...
But MYASTHENIA GRAVIS got in the way...

It's HARD to TALK, when your tongue feels like it's bigger than your mouth and doesn't move to correctly to form words...

It's HARD to READ, when you can't keep your eyelids open, or you lose focus to see the printed page...

It's HARD to WRITE, when your hands don't have the strength to hold or move a pen...

It's HARD to BREATH, when your chest doesn't rise and fall deep enough to get a real breath...

It's HARD to WALK, as you struggle to lift legs that feel like you're wearing cement blocks instead of shoe's, or your legs fall out from under you causing you to fall to the ground...

It's HARD to EAT, when your jaw gets so tired you can barely chew...

It's HARD to USE your COMPUTER, when you need to be propped up in a recliner with pillows to keep your head in place, your elbows propped up so your arms don't fall to your sides and then can't lift them back up without the help of others...

It's HARD to DRIVE, when you can't sit upright in the seat without being strapped in like a ragdoll,  keep your head up without a neck brace or you raise your arms to steer the car...

It's HARD to feel USEFUL & PRODUCTIVE, when you need help dressing, bathing, and having someone help you sit up in a bed because there is no strength in any of your muscles to do even the most basic of daily functions...

It's EASY to CRY, when you feel alone and helpless...when you think no one understands... when you can no longer help care for your nieces like you did before...
                    
It's EASY to LIVE with MYASTHENIA GRAVIS, when you have been blessed with wonderful family and friends you can count on no matter what...

It's EASY to LIVE with MYASTHENIA GRAVIS, when you have faith that GOD will help your doctors and researchers find a cure for neuro-muscular diseases in YOUR lifetime...



BEFORE MYASTHENIA (4 YRS AGO)



SINCE MYASTHENIA (TODAY)




I wasn't able to get a full picture of myself this morning, it has been a rather difficult few weeks. I was propped up in my chair with my cervical collar holding up my head. I couldn't lift my arms high enough to get a better picture!  So no hair or make-up, it been a total pajama day! 

 

This isn't just MY MG life, it's my families and those of other Myasthenics and their families too!
 To learn more visit Myasthenia Gravis Foundation of America