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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Birds Just Don’t Fly

Dear readers, I began this blog about a year ago after a fellow blogger Cathy Chester, who is a ferocious advocate for MS, suggested it during a twitter conversation.

Creating awareness should be our number one priority and  also creating spaces where we can share what it is to live with MG with others who go through the same things on a daily basis.

Myasthenia isn’t called the snowflake  disease for nothing, we all are different, but at the same time  share common denominators. As so many other immune diseases.

We all aspire feeling well enough to complete tasks as simple as showering, walking, or eating. These simple day to day tasks are colossal for us sometimes and not only take away from our quality of life, but also from our very core.

We struggle each day with our feelings and emotions trying to find sense in our lives and figuring out how not to just give up.

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It took me some time, but I think that finally I’ve found a glimpse on  my way in this tumultuous road of wellness.  Some of us tend to think that wellness is the same thing as health, and it’s not.

I ask myself, how can a person who is not healthy achieve a state of wellness that can overcome anything she or he has to endure?

To be honest, I don’t know.  I’m trying to discover the answer to this question through my journal,  jotting down how I feel along my journeys.

Each afternoon a flock of white birds fly above my yard and they are perfectly synchronized nevertheless, their perfection wasn’t achieved without at least falling down a couple of times and finding their exact place in the flock.

So my friends, I’m not going to find my purpose or be well without a bit of pain each time I fall.  However, what brings me hope is believing that I will be able to fly at some point and find a perfect place for myself in this thing called life.

Thanks for stopping by and reading my blog and making me company in my journey through life.

See you around.

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.