Let’s Introduce Ourselves! Use 5 Words to Describe You/ Things You Enjoy

[Ken Reisenwweber]

Jesus

Diaconate

Service

Scripture

Family

My MG has severely reduced my capacity to minister and teach.  And to travel 5 hours to see my grandchildren.  Yet I am at peace, and focus on what I can do and not what I cannot.

[David S]

Old, Bald, Fat with gMG.  🙂

We have found a great way to spend time together and also plan for the future –  traveling.  Cruising.

We have been on 2 cruises since I got this thing and are signed up for 3 more.  We will cruise the Inside Passage – Alaska, the Eastern Caribbean and a big one, 28 nights in Sept ’25 to Egypt, Greece and other places in the Mediterranean that have been places of interest to us for a long time.

We did not realize that for a relatively small down payment you can pay for your cruise monthly, to the cruise line, and pay off before you leave.  Travel insurance is also available that allows one to cancel for any reason and get your money back.  It also has a $50,000 emergency air transport benefit, if required.  Yes it is a bit more money, but we feel more comfortable if we have to cancel because of my gMG

We are now looking for our next adventure place.

We started with a short cruise 5 nights to the Caribbean, out of Galveston, and decided that there are a lot worse ways to spend time.  Yes, it does cost some money but if managed it is be possible.  For us, it has worked.

There are a couple of things about cruise ships that work for me.  Lots of bathrooms and chairs.  (Two of my basic needs.)  🙂   The food is good and there is usually something different to see about every day.  We are always able to find places that are not over run with people where we can sit and look over the rail, and read.  Also people watching is interesting.

The process of learning about the vessel routes in relation to what we have not seen, how to get there and how much it will cost has been occupying a portion of my time.  I also fly a simulated airplane all over the world.  XPlane 12.

The ship’s Hospital/Clinic have ventilators and all of the basic stuff that can keep me alive until they fly me out.  Yes, it is a risk.

My physical capabilities are drastically reduced due to this disease, but have found that we/me can do as much or as little as we please or are able while on the vessel or on shore.

We live in Houston, so a flight to Seattle  and back this Sept. is necessary for us to take Alaska cruise.  I do have concerns about this flight and have some Hydroxyzine to back me up.  This is the trial flight as we will also sail out of Ft Lauderdale and then out of Rome for our 50th Anniversary.

We are getting up in age, and taking into account of my condition, we have decided that either we do, and try to do, or sit in our chairs.

I apologize for my rambling and long post.

Scott

gMG since 2019

 

 

 

[Jonathan A]

I  AM  ME  AGAIN  !

On July 25, 2019,  I started showing symptoms of very weak finger strength  … then the droopy eyelids, competing eyeballs, and multiple rays  with every street light being a Christmas star.

For eight long, suffering and weak months, no doctor could diagnose my ACUTE OCULAR and GENERALIZED MG, despite showing EVERY POSSIBLE MG SYMPTOM, but one.   I was finally diagnosed at the second of five hospitals of 2020.   A third floor nurse recognized my symptoms on March 24, 2020  …  and wrote on my paper pad   … “I know exactly what you have.  We have patients right here at this hospital that have all your symptoms.  You have MG!!!”   So she got a doctor friend to do a NEURO-CONSULT and order tests.  Thymus fine … but my three antibodies tests were so SERO-POSITIVE with “over the moon” scores  … that they repeated the tests again.

I have been IN REMISSION since BLACK FRIDAY  11-27-2020 when I left the fifth hospital.

So I am feeling much better, can drive, see, knee in the garden to work  … knowing I can stand … without having to crawl over to a chair, crawl into it and rest  … in order to try standing and going inside.

I have been slowly venturing out more driving and to activities, church, shopping for items .. besides necessary meds and food.

David is one very BRAVE SOUL.    I can’t leave town.   It took 8 months to be diagnosed and every doctor failed me  …. and even when I KNOW   …  I HAVE MYASTHENIA GRAVIS,  I am still trying to educate my new doctors (except for my terrific NEUROLOGIST) about what is this disease they never heard of  … is all about  … and why my IMMUNO-SUPPRESSANT therapy makes all my blood tests number consistently SCREWY and ANEMIC.    What chance would I have on an airplane or a cruise ship in a strange city to stay ALIVE ??

But now that I AM ME AGAIN, …. I so want to escape, forget I have a fatal disease for just ONE DAY and LIVE.     So I pick one day each week and have a …   F–k  It day  .. and escape  … see a movie, eat out, go to an afternoon theatre matinee, or walk down around the nearby lake.

Because I had 100% hearing and 100% talking/singing loss for 4 months in the hospitals,  I wanted therapy to BE ME  … so I went last semester to a MUSIC DEPARTMENT VOICE singing class, 3 hours each Tuesday for one hour credit  … at the local community college.  Only cost $40  senior rate  … and my voice is coming back.  This semester I am taking two,  one hour credits  … a different music class and production class credit sewing in the theatre costume shop.   I get out, have fun, meet new people, and help my local community college theatre   … totally forgetting for a while,  1.5 years of  MG weakness, 5500 MGs of meds a day,  …  and improperly educated medical people  … that gave me a CODE RED  … due to ACUTE HYPERCAPNIC RESPIRATORY FAILURE due to an OVERDOSE of ANESTHESIA given to an undiagnosed MG patient  … so that I would stay still for MRI tests.   So take pleasure in your small TRIUMPHS.  It helps you forget the dark days from before.

[Yasamin]

how wonderful is that your voice is coming  back. if this is not courage then what is?

 

[David S]

Since I was referenced above, I thought I would chime in…..

I do not see myself as brave.

I consider myself stable.

One of the first spots we visit on the cruise ship is the Medical Office to introduce ourselves with the Dr. and make sure they have a ventilator and that they know how to use it.  The ventilator should keep me alive  until they can fly me off the ship.  All of the Ports of Call have hospitals and I keep my Medical ID on my wrist and also the Forbidden Drugs List in my wallet.  My DW will also be by my side.

The biggest challenge I have is determining when I physically have overdone, as I often do not realize my level of fatigue all of the time.  On our last cruise, I overdid, and did not realize it until b-fast the next day when my speech was very bad, was experiencing hand tremors and felt generally lost.  We cancelled our excursion for that day and spent it by the pool, in the shade, reading and talking.

I take my meds, eat the best I can, try get a good nights sleep and try to get some exercise every day, which is tough some days.   We get to see some places that we have never seen before and eat some good food and get exercise.  We have plenty of time to rest.  Everything I do here, I can do cruising.

One big challenge will be the 4 hour flight from Houston to Seattle this summer.  I’ll take one or two hydrazidines, a couple of  Imodiums and sleep my way there.  I hope.

So no, I do not consider myself brave.  I am trying to live my best life while having gMG.

Scott

 

 

 

 

[Douglas Manning]

Unrepentant optimist and lifelong learner.

[Robert Powers]

Positive attitude, hard worker, adventurer, love the outdoors, More hobbies than time!  Try to not let MG get in the way…even though it does put limits on me…Ultimiris has freed me up due to fewer infusions vs, IVIG and Soliris.

However I am too busy with other family medical issues to let MG get in the way of my responsibilities.

[Yasamin]

Hello everyone.

my name is Yasamin. I am 46 years old and have been recently diagnosed by MG.

I have been struggling with variety of symptoms from last summer. I think I owe the diagnostic to the accident and the neck injuries that I had couple of years ago. it started  with extreme weakness of my hands . I had some similar symptoms back then due to neck injuries which I was recommended by my neurologist and neurosurgeon  to keep eye on them and avoid surgery. So when I faced the signs and symptoms again, the first thing I did was to take an MRI and consult my neurologist.

After I described everything and  making a comparison between the  MRI results, surprisingly  he said there is something else  which is not related to the neck problem.

the guesses were between  MG, Myopathy and Guillain-barré and immediately  referred  me for further investigations.

this happened exactly the same time I had to move to France from my country so I had to start the diagnosis here allover again.

Three  months ago the diagnosis  was finalized and I started Mestinon, which I had to stop  because  the side effects were more than the effects and it was replaced by prednizone 60 mg per day.

Besides the physiologic  aspects, I am still very much in shocked mentally . it is a  life changing matter and I’m not sure how and when I am going to accept it.

I am happy that I found this community online. I will follow  the forums and try to stay focused and positive.

thank you.

 

 

[Kate]

Questioner Curious Helper Introverted-extrovert (shy-like people in small quiet groups)

[MARGARET BARNES-Williams]

Mother,  Grandmother, Survivor, Advocate,Partner