New Year, New Me!

New Year, New Me!

New year, new me! We've heard that before. A new year of fresh starts and new beginnings. Resolutions meant to spark change in our lives, improve what we think needs to be "fixed", ways to make us better people, etc. This isn't my style! In some ways I'm more of a fly by the seat of my pants person. If I don't make resolutions, I won't be disappointed if things don't turn out as planned. 

What I have noticed is I'm becoming more of a "what if" type of person. What if my MG stops responding to treatment, what if I'm becoming a burden to my family, what if I'm not strong enough to keep my family together, what if I don't have the strength to go on. 2019 was a struggle because of the "What If's" and so many other things. My parents, and youngest sister passed on many years ago, my niece Theresa passed a little more than a year ago, my brother and sister in law moved cross country, and my other niece is making it her mission to challenge me every minute of the day.  The feeling of lose and loneliness has totally consumed my entire being! I've struggled to find joy in all the positive things that 2019 had to offer. 

Today's post is the first of what I hope to be many in 2020. My place to be semi-anonymous, hide behind the curtain that is the internet, yet still feel secure in sharing the ups and downs of my life. MYASTHENIA GRAVIS and DEPRESSION be damned! 

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... 

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...

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

It's Been a While!!!

It's been quite a while since my last post...Honestly sometimes I feel at a loss for words.  I follow some very inspiring people, they have such a gift for words.  For me, it's not so easy.

Things are about the same on the MG front, no worse no better. For that I am truly thankful.  So today I'll share some of my recent scrapbooking and card making projects.

The Myasthenia Gravis group I belong to exchanged Christmas cards this year, MG is also called the snowflake disease because like snowflakes, MG affects everyone differently so I used one on the card...The snowflake was removable so it could be used for another purpose.

Our local scrapbook store holds a monthly drawing for a gift certificate.  Here's my January entry. This layout features my niece Theresa, she just LOVES the snow.  Although she can't play in the snow like others she enjoys when you toss snow at her, she laughs and smiles so much!

I also submitted this card for another drawing.  I LOVE this sentiment...I try to find something to be thankful for everyday, so why not celebrate!

My submission for February is about Love & Friendship.

The pictures are of my sisters, my nieces and myself.  The sentiment "A Friend Loves at All Times" is from proverbs. It was a free download from Dee's Bugaboo Boutique , she is creates beautiful scripture word art to download every Tuesday.

I'm not very big on Valentine's, but here is what else I entered into the drawing.  I didn't win this month, but my sister Gae did!

As always, thank you all for dropping by now and then.

My First Meeting and a Bit About Coraggio!

This past weekend I had the opportunity to attend my first Myasthenia Gravis chapter meeting.  The NJ chapter holds about four to six meetings a year.  They meet about an hour from my house, and since I can't drive as far as I used to without my arms and neck tiring, my sister acted as driver.  We made a few references to "Driving Miss Daisy" and off we went!

I was very excited to finally meet other people who live with MG. MGer's  as my friend Kerri calls us.  I still don't know what most people prefer, I guess I'll learn as I go to more meetings!  The people were warm, friendly, and gracious.  Many shared their stories, they talked of daily struggles and ways to overcome obstacles they faced.  The chapter has a lending library, you take a book home and mail it back to the librarian when you're finished.  

A guest speaker was also on the agenda.  Her name was Lisa K. Gigliotti, J.D., an administrative law judge, a policy adviser for the Michigan State Senate and Governor, as well as an advocate for people with disabilities.  Ms. Gigliotti is also an author and motivational speaker. She too lives with Myasthenia Gravis and Rheumatoid Arthritis.

Her presentation was called "Coraggio, Lessons for Living From an Italian Grandmother". Lisa talks about how she overcame the disabling effects of Rheumatoid Arthritis and later Myasthenia Gravis. She shares stories about her family, and how she drew strength and coraggio (courage) from her grandmother after the death of her mother and aunt.  

I hope you get the chance to hear Lisa or read one of her books.

To visit Lisa's blog, or watch her video visit:

 withcourageican.com

Lisa, Thank you for showing us how to live with "CORAGGIO!"

The Yes We Can Van

I had the pleasure of meeting one of my newer Facebook friends yesterday.  Her name is Carole Brown, she's originally from the UK, buts now calls the USA home.

Carole is currently traveling across the United States in her "Yes We Can Van". It's a vintage 1970's VW camper van.  

 

The main purpose to raise awareness  about Myasthenia Gravis (MG). MG is a rare under diagnosed auto-immune neuro-muscular disease that causes severe muscle weakness, currently there is no cure.  Anyone can be affected by MG, it knows no age, race, or ethnicity. 

Carole's mom lived with MG, it has become her life's mission to tell others what MG is and how it affects people's lives. She is currently traveling along the southern states en route to California.  She plans to visit MG chapter meetings and visit with others whose lives have been affected by MG. 

If you would like to follow Carole and her "Yes We Can" camper van or learn more about Myasthenia Gravis simply 

 click on this link.

  Wishing you safe travels my friend!

 

MG and Tootsie Rolls, An Adventure in Eating...

My house recently acquired a windfall of Tootsie Roll candies from the 4th of July parade.  As the floats and various groups pass by they throw candy and other goodies at the spectators.  My niece managed to collect almost a gallon freezer bag full of yummy goodness, including lots of original and flavored Tootsie Rolls and Tootsie Pops.  She is NOT a Tootsie Roll eater, and began sharing her bounty with the rest of the family.  I on the other hand LOVE Tootsie Rolls, so my share of the booty kept getting larger.

Since being diagnosed with MG I've learned through trial and error what I can and can't eat.  My neurologist warned me about hard dry things, chewy things, and even changing the way I eat or drink as the need arises.

I don't chew gum anymore, it makes my jaw so weak I can hardly keep my mouth closed.  I'm careful to make sure to chew well and take smaller bites.  I love caramel candy of all kinds, but avoid them as much as possible.  It's not very attractive looking when your totally enjoy that sinfully good chocolate covered caramel and drool is coming out the side of your mouth, so I save them for a special treat with others who don't mind if I drool!

I can't remember when I last ate a Tootsie Roll, so at my niece's urging we shared some candy together.  Well what a mistake that turned out to be! I chewed, and chewed, and chewed.  My jaw was becoming weaker and weaker with each chew.  It was worse than chewing bubblegum.  I never imagined I was going to have such trouble.  I was afraid I was going to choke on the darn thing!  It finally went down, I breathed a giant sigh of relief.  Then in a sweet gentle voice my niece said "here Rachel, I know you love Tootsie Rolls" as she passed me another.  I told her I had trouble chewing the first one and would save the others for another time.  And spoken with the wisdom of an 8 year old she said " I could call 911 and CPR you if you choke"  I couldn't help but smile and thank her, but saved the Tootsie Roll for another day when I felt like I needed some excitement.

So as a reminder,be careful what you eat.  But most importantly have someone around who can call 911 in case you are foolish enough to choke on a Tootsie Roll!

The Trouble With Thistle...

I have to admit purple isn't exactly one of my favorite colors, but I can't resist the sight Thistle in full bloom. It's the national plant of Scotland.  Legend has it that men carried it with them when they went into battle to remind them of their country and family left behind.

It grows tall and stately, but it's stem is covered with huge thorns.  Butterflies and bees enjoy landing on the blossom to sip nectar.  I don't know anyone who grows them in a flowerbed purposefully.  They grow wild along the roads and highways.  They make for a beautiful sight!

One day last spring I noticed a Thistle plant was growing up through the hedges in the front of my house.  I couldn't have been happier.  So I decided to let it grow, I was very careful when I trimmed so I didn't disturb the plant.  I watched and waited as it grew taller and taller.  It was almost six feet tall and full of blooms ready to burst any day.  I couldn't wait, everyday I went out with my camera checking to see if the flowers had opened.  And then it happened, so many of the flowers opened I couldn't wait to return home from running errands to take the perfect picture.  While at the store the weather turned, a giant thunderstorm moved in, bringing severe gusting winds along with it.  It was still pouring when I arrived home.  I waited patiently for the storm to pass, it lasted several hours.  When the storm moved out I grabbed my camera and headed out to the porch to get the shot I waited so long for.  It was not to be, the blooms had been blown from there stems, the seeds being spread by the wind!

My front and back yards are now full of fledgling Thistle plants.  There's even one growing at the site of the first plant.  I will watch that one grow in hopes of capturing it in all it's splendor, maybe the weather will be on my side this year!

Sometimes I think living life with MG is like being a Thistle plant.  We try to grow tall and bloom for all to enjoy, but our thorns (Myasthenia Gravis) get in the way.  We are strong, yet vulnerable to the wind and rain.  We are planted firmly, our roots aren't easily destroyed.  We live with the hopes of blooming another year in spite of whatever adversity comes our way, that's life with Myasthenia Gravis...

June is Myasthenia Gravis

Awareness Month

to learn more visit:

http://myasthenia.org 

How I Met The Monster.....Conclusion

A year ago this week my life would change forever

Where we left off; As I said yesterday all my tests were coming back negative or with normal results. This only added to the stress and frustration I was feeling.  I was at my wits end.  I continued to pray, I prayed for the doctor's to discover what was wrong with me, I prayed for the strength to accept what would come my way, I prayed that my life would be spared.  But I never bargained with God, it's not my way.  I don't make promises for good things to come my way.  It's always been my belief that if I led a good life I would be given the strength to live with whatever came my way.

My doctors and neurologist were very busy reviewing all of the tests the had done and what they were considering next.  I knew God was looking over my shoulder, I was starting to feel better.  I was finally allowed out of bed after 4 days, but only to go to the toilet!   After three and a half days things began to turn the corner.  They thought they had found the problem.  A wave of relief came over me!  After reviewing all the labs and other test results the doctors discovered I had a seriously low Vitamin B12 level.  I was caught by surprise, who would have thought that a low B12 level could cause so many problems.  It turns out that Vit B12 is essential for your nerves and muscles to work properly!  I was started on a program to increase my B12 level, I would have to inject myself with the vitamin daily for several weeks, then weekly and then monthly, along with an oral supplement for the rest of my life.  This was a whole lot better than a neuro-muscular disease.  I offered a pray of thanks, again I had been blessed.  Some other labs drawn, it was determined that I had an absorption problem.  The doctor and neurologist said usually the neurological problems I was experiencing go away entirely.  Some would take longer than others, some might never go away, only time would tell.  It was agreed that I could go home after my B12 level increased.  I was discharged two days later, feeling like a new person.    I had to follow up with my doctor and neurologist in a few days. Any other testing could be done as an out-patient.

My first visit with my doctor went pretty well, but there was some concern that I still had so much weakness in my arms and legs.  I had to continue with the B12 regimen until I saw my neurologist a few days later.  The next day I had another episode of almost paralyzing weakness.  I was filled with fear all over again!  I found comfort in the fact that I was going to see the neurologist in the morning.  I had no idea what to expect form this visit.  We talked at length about the B12 issue and the problems that it could cause, and then he said it  "I want to test you for Myasthenia" my heart sank, I could feel the tears welling up in my eyes.  I thought I had escaped a terrible fate.  He was so kind and reassuring, he said "hopefully this is the last time we will ever have to talk about this."  He wanted me to have Acetylcholine antibody tests drawn ASAP, an EMG was scheduled at his office for the next week. We would talk about the results then.  I went to the lab on my way home.  When I had the strength I searched the internet for anything I could about Myasthenia Gravis.  I was now more afraid than before.  I had no idea how bad this disease could be.  When I look back now I think to myself, our family has never done anything small. Even with this I couldn't just have a droopy eyelid, no not me, I had to be almost paralyzed from weakness.

Now was I to become one of the many who struggled for years to get a diagnosis or would I be spared the same fate.  Only time would tell.  Off we went to for my next appointment, and guess what my antibody tests were NEGATIVE!!  Dr. B. did my EMG, that was normal other than finding out I had Carpal Tunnel Syndrome.  No surprise there, I spent much of my day on a computer at work and am an avid crocheter.  Both are notorious for causing repetitive motion injuries.  The next step would be to have the MuSk antibody test done.  Because of the expense and nature of the test I would need prior authorization.  It would take about four to six weeks for their decision.  In the mean time we would see how much the B12 regimen helped the weakness.      Then the letter arrived from my insurance company, as Gomer Pyle says "Surprise, Surprise, Surprise!"  The insurance company didn't grant approval for the test, they didn't feel there was strong enough clinical evidence!!  I was stunned to say the least, I couldn't call my neuro fast enough, he was floored.  By now I was hysterical, he tried to reassure me, then the final blow came.  He said with or without the test I would recommend the same thing. I want to start you on Mestinon.  All I could think about were the horrible side effects I'd read about.  I didn't want to pee myself or drool all over or whatever else could happen.  I was not taking any medicine until I knew for sure that I had Myasthenia.  So then off I went to Philadelphia for a Single Fiber EMG, and yes that was negative as well!  I thought I was on the road to nowhere, everything was normal or negative, I was so discouraged at this point.  God bless my neurologist he has the patience of a saint, he is such a kind soul.  I know God was looking after me when that angel of a doctor came to my hospital room that first day.  I was now a member of the sero-negative Myasthenia Gravis fraternity.  A group I really didn't want to join, but here I am.  I began Mestinon at 30 mg 3x daily.  No side effects, thank you God!  It helped some, but not enough,  the dose was increased to 60mg 4x daily.  It helps so much, I don't want to think about what my life would be like without it!  My only regret is that I didn't take the Mestinon when the doctor first suggested it.  As I've come to learn, there is no sure thing with MG ALL your tests can be negative and you can STILL have MG.  I am so blessed that I didn't have to wait years for a diagnosis.  My neurologist has treated many sero-negative patients in his career.  Thank you God for sending an angel my way!

June is Myasthenia Gravis Awareness Month
to learn more visit:
http://myasthenia.org

How I Met The Monster.....Episode Four

A year ago this week my life would change forever

The hospital adventure;  Well as I mentioned previously, I went to the hospital by ambulance. And yes the neighbor's were all on their porches to watch my departure!!  After all, who doesn't like to watch a neighbor on a stretcher.  

Our town is rather small, it's "One Square Mile of Happiness", well that's the motto anyway!  We have a volunteer Fire Department and First Aid Squad, they are a very dedicated group of people.  They are there for the whole community day or night.  There is never a charge for their services!  

My sister place a call to the First Aid Squad, filling them in on all the details.  She helped me to the living room, the doorway to my bedroom is very tricky to get in with a stretcher.  We didn't want anyone to get stuck!  Again we gave a rundown of the events of the last few days.  I'm so glad my sister was there through the whole thing, I don't think I had the strength to keep telling my saga.  For safety's sake I was strapped into a transport chair and brought down the front steps.  I was then helped onto the stretcher and placed into the ambulance.  The crew for my trip was a family of longtime members.  Mom, Dad, daughter, and her younger brother who is in training.  That's not unusual in Mayberry (our unofficial town nickname!).  We went to grammar school and high school with Mom & Dad, and their daughter was my brother's ex-girlfriend, like I said Mayberry!  It's funny, the first thing I did was apologize for not sending my 2010 donation in yet, they laughed and said they would give me a ride anyway!  


This time I went right into the ER, that's the beauty of coming by ambulance!  My doctor had already ordered labs, so they were done ASAP.  A history was taken by a nurse practitioner, one of the first things she asked was about a history of MS in my family.  To my knowledge there was none, but we have lots of other crazy things!  If you name a cancer there is probably someone in my family that's had it!  It was now time to wait for a room.  The place was pretty busy, but I only waited about an hour or so.  The time passed quickly, my body was still going crazy.  Weakness, muscle spasms, electric shocks, all taking their turns.  Then the sweats returned!  I hadn't had them in a few days , but they were back with a vengeance. All I could do at that point was keep ice cold cloths on my head and neck until my room was ready.


Shortly thereafter my doctor arrived, we talked about what was going on.  He was so reassuring.  The weakness was so bad at this point I couldn't care less what anyone needed to do to figure this whole mess out.  He schedules a repeat CT Scan, an MRI, and an EEG to go along with all the labs that had been done.  He had already contacted the neurology group that his office works with, and he reached out to an infectious disease specialist as a standby.  


Through all of this mess my vital signs were pretty good.  My blood pressure stayed pretty stable, it only rose when I was extremely weak.  Even my pulse oximeter stayed in the mid to high 90's!  I was placed on strict bed rest.  This included NO bathroom use!  I am so not a bedpan person, it's not pleasant for the patient or the nurse.  I had trouble sitting, turning, moving, and doing the simplest things for myself.  When it came time to eat the nurse's wanted to help me .  This nurse was NOT going to let anyone feed her!  I was so stubborn, I had them turn my tray side ways on the bedside table, I raised my head as high as the bed would allow and try to push the tray under my chin.  I was barely able to hold a spoon or remove the paper from my straw.  But I was going to do it my way!  


Some of the lab results were coming back, so far all was negative.  At this point a stroke was ruled out.  They also ruled out things like West Nile Virus and Lyme Disease.  The EEG was negative, no seizure activity.  The repeat CT Scan and MRI's were also negative.  There were no  tumors or lesions on the brain, so that kind of threw an MS diagnosis out the window.  The symptoms were wrong for Guillian Barre, that usually causes paralysis from the feet up, in some cases it causes paralysis of the breathing muscles requiring respiratory support.  My weakness was more generalized, mostly from my neck to my knees.  I myself had never even thought of Myasthenia Gravis, as far as I know it was that disease that made your eyelids droop.  As far as I could tell mine weren't droopy!  No one else mentioned MG yet either!  

With every negative test came joy, but also fear of what they might find.  We were having some problems at home, I even thought maybe I had lost my mind and was causing my own illness!  I couldn't hold back the tears, I was hysterical.  I was sure I was having a breakdown!  I expressed my fears to my doctor, he said to me that I wasn't crazy, he was sure there was something physically wrong, it was NOT in my head... Tomorrow, the stunning conclusion...

June is Myasthenia Gravis Awareness Month:

to learn more visit:  http://myasthenia.org 

How I Met The Monster.....Episode Three

A year ago this week my life would change forever

Where we left off;  I might not have mentioned it, but I've been a nurse for over twenty years.  Like many in the health care profession we self diagnose and don't always seek medical attention as quickly as others might.  That was the case for me.  I see a doctor regularly for Diabetes, but try not to make a habit of going to the doctor for much else.  I've always been this way...When you work with them every day, you don't want to see one on a day off!!

The medication didn't help with my symptoms, I didn't think I had Vertigo, period!! I remained in bed for the better part of the next day.  Only getting up to take care of personal needs, I still needed help, the walls and chairs were my best friends.  I even had to stop along the way to rest, and the bathroom was only two rooms away.  That evening things got worse.  I began experiencing painful muscle spasms and a feeling best described as small electric shocks throughout my body.  My legs would become rigid, like I was having giant charlie horses, my neck would become stiff and turn in strange directions, I felt like Linda Blair in "The Exorcist"!  My body was swinging back and forth between painful spasms and extreme weakness.  I also began to experience this strange heaviness in my chest.  I didn't really feel short of breath, but couldn't really take a deep breath.  It was like my diaphragm wasn't working properly. 

I hated to admit it, but I needed to go to the emergency room, I didn't think I was dying, but I knew in my heart of hearts something was horribly wrong with me!!  My sister wanted to call the First Aid Squad, but stubborn me wasn't going to make a spectacle of herself and go by ambulance anywhere!  I live in a small town, "Where Everybody Knows Your Name" as they sang in the "Cheers" theme song, the last thing this idiot wanted was for all her neighbors to stand on their front porches and watch her be carried out of her house on a stretcher!!  So off to the ER we went.  It was still early afternoon so I didn't think we would wait that long. WRONG!!!  My problem wasn't as severe as others, no chest pain or heart attack, so I had to wait.  And wait I did, I saw a triage nurse rather quickly, but waited several hours before being taken into the ER itself.  It wasn't until I began sliding out of the wheelchair I was sitting in that I was finally taken in!  Again I explained my saga of the last few days.  The doctor ordered all the usual labs, they even checked for drugs and things just in case I was some sort of fiend looking for a fix or something!!

I went for chest x-rays, and a CT scan.  They were normal, but my symptoms persisted.  They were less severe than they were earlier, but I had been sleeping on a stretcher for several hours at this point.  They doctor came to the conclusion that there was SOMETHING neurological going on, but because all my test were normal I should see a neurologist and return to my primary care physician ASAP!!  I was given my discharge papers and sent on my way.  It was almost two in the morning now...All I wanted to do was go home and go back to bed.  But I didn't get much rest.  My mind began racing with thoughts of what might be wrong.  The nurse in me took over, the "alphabet" neurological conditions started to pop into my head.  MS, ALS, MD, I even considered Guillian Barre Syndrome at one point but the symptoms didn't fit!

It's now Friday morning, all I could do was stay in bed and deal with whatever my body threw at itself!  We made an appointment to see my doctor first thing Monday morning.  There was no way I was going to try to make it to the doctor today!  I spent all of Friday and Saturday in bed, the spams were becoming more frequent.  The pain was awful, but I thought I could stick it out until Monday.  Come Sunday morning the pain was so bad, my muscles were twitching, and the electric shock like feelings wouldn't stop.  I could barely move, I couldn't lift my head, my arms and legs felt like they had concrete blocks tied to them.  I felt like a quadriplegic, I couldn't hold anything in my hands.  My voice was weak, I was so afraid, I cried like I had never cried before.  My sister called my doctor, he wanted us to get to the hospital ASAP.  He called ahead and told them to expect me, he did admission orders over the phone.  I was on my way back to the hospital once again.  This time we went by ambulance!!  
Tune in tomorrow for Episode Four... 

June is Myasthenia Gravis

Awareness Month

to learn more, visit:

http:///myasthenia.org  

How I Met The Monster.....Episode Two

A year ago this week my life would change forever

Back to the story;  The night passed without incident, although I slept like I hadn't had any sleep for weeks.  I woke feeling refreshed in an odd sort of way.  I still had a tired run down feeling.  I was sure I had some kind of virus or something.  It was time to get on with my morning routine, so into the bathroom I went.  Passing my sister along the way she asked "what's wrong with your leg?" , "nothing, why?" I replied. She went on to tell me I was limping, I remember saying that I thought my legs were still a bit tired from yesterday!

Things seemed normal at first while washing up, but as I continued along my arms became weaker and weaker. I could hardly keep them up, again I felt like I was going to fall over!  I had never remembered feeling so weak in my entire life.  Even after having surgery to have my gallbladder removed I had more strength.  So with a great deal of effort and using the walls and furniture for support I returned to bed.  My sister was very concerned, she knew something wasn't right and wanted me to go to the emergency room.  But no, not this nurse!  I was sure whatever this was would pass on it's own.  I'm not really a go to the ER kind of person.  Having been  in the medical profession my whole life, THAT was the last place I wanted to go!

I really didn't feel any better. I reassured my sister that it was just a passing thing.  The truth was I was trying to convince myself of the same.  As the day passed my day was filled with doing as little as possible, and becoming so weak afterward I required a nap.  I continued to feel better when I woke up but that didn't last.  Again I was so weak I could barely lift my head, arms, or even turn myself in bed.  I was so scared by now, words couldn't describe the fear I was experiencing.  It was now well after midnight, I promised my sister I would let her take me to see my doctor in the morning.  I've always had a strong faith, but that night I never prayed harder.  Please GOD, if it's your will help me make it through the night!!


Morning came, the birds were chirping outside my window as they always do.  Their song was never more beautiful.  I was hardly able to sit up, things did not get better after resting as they had before.  I called to my sister in my strongest voice, which was now only a soft whisper.  She could barely hear me. She had already called the doctor's office.  I could come in as soon as I was ready.  My doctor was in their other office that morning, so I was scheduled to see the nurse practitioner.  My sister helped me wash up and dress, I was so weak I couldn't do anything without help.  With her arm for support she walked me to my SUV, she lifted my legs into it, I simply didn't have the strength.  Tears ran down my face, I tried not to let her see me cry.  She helped me out of the truck, we made our way to the building.  I had to sit and wait for the elevator, I could barely stand without help by this point.  


The nurse practitioner began her assessment.  I gave her a recap of the events leading up to my visit.  The funny thing was that I had just been to see my doctor two weeks before.  I have Type 2 Diabetes and see hm regularly.  All was well at that visit, my labs were great, my blood sugar was in great control.  I was feeling better than I had in a long time.  I was walking up to two miles daily, and losing weight at a nice healthy rate.  She thought I might have been experiencing Vertigo, so she prescribed medication to help with the symptoms.  She advised me to go to the ER if things didn't improve or got worse.  I really didn't think Vertigo was my problem, but I was too weak to question things.  We stopped at the pharmacy on the way home.  I took the first dose of meds and went to bed.   Tune in tomorrow for Episode Three...

June is Myasthenia Gravis
Awareness Month
to learn more visit:
http://myasthenia.org

How I Met The Monster.....Episode One

A year ago this week my life would change forever...

I remember the details like it was yesterday.  The day started out like any other.  I got up early as I usually did, fixed myself a cup of coffee, got freshened up and dressed.  I had a few things I needed to get done before it got hot. It was a bit warmer this week, but spring in NJ is sometimes like that, comfortable one day, hot and humid the next.  The house was super quiet that morning, my sister was in Delaware with my niece for some medical appointments. I had the house all to myself!! I love when that happens, sometimes silence is a blessing.

It was mid morning, I ran a few errands and made a quick trip to the market to get what I needed to finish dinner.  One of the things on my to-do list was to replace the oil in the deep fryer and give it a thorough cleaning.  I so hate to clean the fryer, I usually try to pawn this task off on my sister.  The house was still nice and cool so there was no need to turn the air conditioner on.  I remember working up such a sweat while cleaning the stupid fryer that I said out loud to myself,I am never cleaning this thing again.  I was dripping sweat from every part of my being, it was horrible, I even had sweat running off the tip of my nose.  I had never had that happen before.  I was soaked to the skin.  I knew I needed to take a shower to cool down, but felt like I was going to collapse, so I went and rested on my bed before I got in the shower.  Well much to my surprise I woke up an hour later.  I felt much better and went and took my shower, this horrible weakness overcame me again, I was afraid I was going to fall out of the shower!  So back to bed I went.  I was becoming a bit concerned, but figured it was the heat or my blood sugar.  I did a glucose check, that was fine so while I was at it I also checked my blood pressure, that was a little elevated, but it was nothing to fret about.  By now I felt so weak I could hardly keep my eyes open, I was asleep in a matter of minutes.  


The heat of the afternoon sun shining through my bedroom window woke me.  I felt rested and refreshed, or so I thought.  I got a few things ready for dinner and had to stop again, every time I tried to do something I was becoming more and more drained.  I really didn't want to go back to bed for a third time so I decided to take a short break and watch some TV in the living room.  Well just as I had earlier, I fell asleep again.  This time I was awakened by the sounds of my sister coming through the front door upon her return from her trip.  The first thing she said to me was " you look like shit, are you feeling okay?"  I remember saying to her a haven't felt good all day, I was fighting a headache.  When I heard my voice it startled me a bit, I sounded funny to myself, almost like I had a mouth full of marbles.  Again my sister asked, "are you SURE you're alright?"  I repeated "I'm fine, just a little tired" with my mouth full of marbles!!  "I think I just need to go lay down again, I repeated", but something was different this time.  I was trying to raise my head and gesture with my hands and arms as us Italians try to do when we talk, well to my shock I could barely lift my head or arms!  I mumbled to my sister "I weally need to go back to bed"!  I was unable to get out of the chair, she helped me up and walked me to my bedroom for what would be my third trip.  I knew something was horribly wrong, but I was scared, stubborn, and determined that whatever it was would pass after I got more rest.  I couldn't have been more wrong....   Tune in tomorrow for Episode Two... 

June is Myasthenia Gravis Awareness Month
to learn more visit: http://myasthenia.org

Day Lilies

The first Day Lily has opened in my yard! It made me think about how much I have in common with them.

Each flower blooms for only one day, it's orange blossom swaying in the gentle breeze on a warm spring day. Life with MG is sort of like that. There are days when I feel like the beautiful Day Lily gracing my flowerbeds, standing tall and proud.  Then they are days when as my blossom fades I need to rest and gather strength to bloom another day!   


Today I stood tall and proud, tonight I will rest to BLOOM again tomorrow!!

Little Things Make Me Happy...

Nowadays even the little things bring me happiness;

As I lay in bed waiting for my morning meds to kick in I feel the warmth of the sun on my face, the smell of the spring blooms floating in the air, the coo of the doves that have nested beneath my window. I say my morning prayers, then I'm brought back to reality as my niece jumps on my bed yelling "rise and shine sleepy head" I gently remind her "Aunt Rachel needs a few more minutes, her medicine hasn't started to work yet." She says "I'll help you up" as she pulls on my arm with all her might. Of course I can't budge, but she persists.

I can't spring out of bed, jump in the shower, put on clothes and run out the door like I did in the past. Everything is planned to the best of my ability. Do I need to rest between tasks, am I strong enough to climb the steps today, can I put my earrings in without help today.  That's just part of life with MG, it's my life now so I have to make the best of it.

Today is laundry day! I enjoy doing laundry (call me crazy). I love the smell of freshl washed linens, and the feel of warm clothes as I pull them from the dryer.  But as with most everything in my life, even doing laundry is a chore (pun intended!).  My MG affects my limb girdles, this makes it difficult for me to climb stairs and lift my arms, especially if I'm carrying something.  

Last week my sister and I were at the store and I bought a new laundry basket. Well things being what they are, for some this might not be such a big deal.  Not so for me, this laundry basket has helped me regain some independence!!!  Our washer and dryer are in the basement. I have 10 steps to tackle with each and every load I do, it's  like climbing a mountain. It's the perfect size to hold a single load of clothes. Yet sturdy enough for me to drag it down the steps, and use it to lean on to push myself back up the steps again. So on a good day I don't need to ask someone to bring the basket up or down the steps for me.  This makes me so very happy!!

So Thank You Sterlite for creating such a great laundry basket!!

**Now if you could invent something to Fold it too**