Prognosis: Hope

Dear snowflakes, as the days spent in the hospital fade away and I get on with getting a little bit better each day I wonder about how I feel about the guarded prognosis I got when I was discharged from the hospital.

Guarded in medical terms roughly means that, it is usually more ill than a serious prognosis, but not as ill as critical. The doctor is not exactly sure of what the patient’s probability for recovery might be, but they still believe that the patient has a (slight) chance of recovery.

For those of us who live with MG that “slight chance” can be filled with what ifs.

I need to hold on the that slight chance of recovery.

Recovery to a place where I was before, a healthy place. A place where I can go on with my life without worrying to much about the tight schedule I have for my meds, or about taking frequent breaks just to do some housework, or trying to not stress out too much, or keeping cool in this hell of a summer.

Message Stones

via morguefile

Breaking those new frontiers of wellness can be achieved if I hold on to hope.

Hope is the motor that moves me forward. It heals my spirit and calms my body.

Hope gives that “slight chance of recovery” a whole new light.

Hope is the foundation for our doctors, nurses and caregivers.  Hope is what keeps everybody believing things will get better.

Like my neurologist told me today, “if you’re not worse, than you’re better.”

His affirmation comes from two different places, like if it’s not right than it’s left.  I don’t know if I was supposed to feel good about it, but at least I didn’t feel bad either. It felt like a pat on the shoulder with a push hiding somewhere.

My experience with Gamma is that is usually makes me sicker to than get me better. Crazy dichotomy, but it’s the reality of my realm.

Facing the possibility of a new treatment ahead of me in a couple of weeks, if this one doesn’t kick off is not something I want to think about to much. Specially with Solaris being something relatively new. With all the side effects that it surely will tag along is a challenge that lays ahead.

Nonetheless, I will continue to hang on to my hope.  Not only to hang on to it by myself, but to be grateful for it each day.  And as the day rises and all the sounds of the new day begin announcing happily that we get to live one more day on this blue ball in the Universe I’ll write in my prayer book in contemplation asking my dear Lord to fulfill my heart and heal my body with an everlasting and eternal stream of hope.

Thanks for sharing with me a little bit of your time, be kind to yourself and remember we all heal in different ways we just need to figure out which one works for each one of us.

See you on my road to recovery.

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The Brazilian Connection

Dear readers, as an MG patient you just accept and learn to deal with flares.  I’m not saying they are easy, but it’s just something we do.  We know the ropes of Myashtenia. However,  sometimes we have to go through “what the ?????” moments.  Feel free to fill in the interrogative signs with whatever you want.

As Ian would say, “what the fart”  is going on????

You are probably asking yourself, “Ahhh so, what is that thing of the Brazilian connection all about Missy,  get to the point”.

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Well my dear friends to get there, I’m going to have to go back a little in time.

On Friday I visited my neumologist because I got banged with the elephant on my chest syndrome we all know to well.  I was going through the tests for pulmonary weakness, when the technician decided to share some interesting facts about Myasthenia.

This is how it went down,

“Oh, so since when do you know you have Myasthenia?”

(Me barely breathing during my tests)

“2008”

“Hum, did you visit Brazil or any other exotic destination?”

I felt like having a Sponge Bob moment, like when his eyeballs just fall off his face.

Me gasping, “MG is autoimmune.”

“No, no… I studied this disease in school ( I would like to know which, to write a really bad review) it has to do with a virus.  Guillain-Barre, Myasthenia,  and  ALS,  ALL  are the same thing. Most of the people who get them have been down to Brazil.”

In a “AS A MATTER OF A FACT” tone of voice.

At this point, I thanked God and the Universe that my husband was outside of the office waiting for the tests to be finished,  and not inside with me because he would have had a fit.  When I told my children they were extremely aggravated and angry about the incident.

I only ask myself, how much do we really need to be put up with?

If people don’t know, I don’t care a snicker, but when my healthcare providers don’t know,  it’s just plain terrible.  My neumologist is a caring and kind human being, but he should LOOK into what his respiratory technicians are putting his patients through.

She needs to go back to school and learn her business because she doesn’t deal with peanuts, but people.

The horrific thing is that, the Brazilian connection wasn’t even the worst thing.  While performing my routine tests, she paid her bills by phone, searched it continuously and even took a bathroom break.  I think I heard her fart in the doorway.

So, my dear friends there you have it.  Flares aren’t the worst things that happen to us, the very worst are flares and incompetency, insensibility and ignorance all mixed up together.

Thanks for stopping by and remember to be kind to yourself and others.  Keep me company of this treacherous rode towards wellness of the body and soul.

 

 

The Patient of 152B

Dear readers, it’s been a while since I’ve shared anything with you.

Sorry for that but, I’ve been feeling weak for some time and all of us know that when we’re weak, we’re weak.  Everything in our lives becomes a colossal task.NYUWork-009

via morguefile

Which by the way got me admitted on Monday for an IVGG treatment.

When I’m in the hospital I feel vulnerable, and a bit lost to tell you the truth.  It’s nice when I hear a resident call me by my name, instead of the patient in 152B.

Most of the nurses who work here don’t really know much of Myasthenia, never mind pronounce it.  Yesterday I had the opportunity of having a young nurse who actually came around and talked to me about MG.

As she was giving me meds and changing my infusion lines, she told me she had never had a patient with MG, and as soon as she got home she was planning on getting information about the disease.

I told her that she was more than welcome to ask me anything she wanted to know.

We had both a nice and educational back and forth for a while, it felt good that she was interested enough to ask.  Awareness is an important thing for MG, few people understand what this is all about.  I thought about the hashtag #HaveYouHeardofMG that has been going around lately as we spoke amicably.

I face so many unknowns after those two bracelets are fixed on my wrist.  One with my name and information and the other orange label that warns nurses and medical personnel that I am at risk of falling.

Thoughts of how things will turn out this time around feed my fears and jitters take residence in my tummy.  Never mind if the people who love me the most in this world try to reassure me it’s going to be okay, it’s never okay.  Although, I do appreciate their love, and the strength they give me along the way.

In a world where patients are treated with dignity and respect as human beings and not numbers or otherwise maybe these fears would be less, but sadly we don’t have this type of healthcare system.  The system that prevails is one where our family can’t leave us alone for a moment under the care of nurses and medical personnel due to crippling fear that we will be neglected and put at risk.

Testament of this would be my daughter running to fetch my tray because they forget to bring it in because I’m in preventive isolation and my food tray is the last to be delivered in the hall.

So, my dear friends today is not a good day for me, however I know and believe tomorrow will be better.  If I loose the ability to believe in this I have lost one of the most important battles we deal with every day and that is never to loose hope.

See you around the corner.