A Prayer For You

Dear readers,  I take my life one day at a time and I’m sure that all of you do the same thing.

Our routines and so much more have a direct impact on those who surround and love us deeply. They live through our ups and downs, sometimes voicing their feelings and other times just remaining silent.  It’s hard on us and at the same time for them as well.

Sometimes I forget that and today as I went through my daughter’s things because she  recently left to begin her new school year in New York I was remembered of that as I read   a prayer she wrote during the Summer.  One that I share with all of you today with much love.

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“I heard once that prayer is about redefining our desires.  It is about being open to ask for guidance and even though we do not control our journey that does not mean we are astray.

Today I pray open to hear, even when that fills me with fear.  

Dear Gracious God, I am not praying to give excuses or explain my silence.  Whom I am trying to fool? My silence is yet nothing more than silent panic. 

You know that.

I pray for longer walks, for less tiredness. 

I pray for more smiles and restfulness of spirit.

I pray that the spirit might comfort the body.

I pray for shorter naps and more energy.

I pray for coffee @3 pm between shared stories. 

I pray for our usual complicity to remain intact in times of sickness. 

I pray for our unspoken bond to grow stronger in the face of weakness.

I pray that we can share prayers.

I pray that her body can gain strength while her spirit stands strong. 

For now, I pray that she can rest knowing that we will do our best holding her so she does not fall.

Amen”

May the words of this prayer belong to all of us today.

 

 

 

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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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Stress & MG: Life in a bubble

Dear readers, all of us now that life is stressful.  So, how can we actually live without stress.  The answer for that question is quite simple, WE CAN’T.

All of us sick or healthy deal each day with different amounts of stress.  Staying on the positive side,  I would say that stress will not affect us as much if and only if, we learn to mange it in a healthy way.

 

Living in a bubblevia morguefile

Gees, that sounds beautiful, but really some situations are darn difficult to manage nevertheless the ways and manners we cope with them.  For example, my  23 year old son tells me at two in the morning, the following,

(while I was  busy dealing with last minute decorations for  my soon to be five year old’s theme  birthday party, which was the next day. )

“Mom, since I want you to be part of the process, I have something to tell you,  I’m planning to get married like probably in August.”

“What are your thoughts?”

First, let me put the situation in perspective for you, he has one semester to go to complete his masters in psychology, they started dating last year, he can’t support himself, but his girlfriend and him want to move in together during the Summer, but her parents are very Catholic and they feel the necessity of her getting married before living together.

Well, I responded,

“I think this whole idea is a bad one”…., and I went on to tell him why I thought this idea was bad in general.  But, this post isn’t about my son’s lousy choices, it’s about how my and your quality of life is disrupted by stress.

Whoever thinks we can go on with our lives and not  deal with stress is out of his or her mind.  How in the world can situations like these or any you guys might be going through not be stressful?

We are going to be stressed for Pete’s sake, if not we would be living in a bubble.  Remember that John Travolta movie, “Boy in a Bubble”?   My dear friends it’s nearly impossible for us to live this way.

On the other hand, stress is one a key element in our setbacks and flares.  Nobody right in this moment have any doubt, that I’m dealing with a major flare in my condition.  While I sit in my desk writing , I’m waiting for my neuro’s call because all my symptoms are up and front.  The night of his announcement, I needed to go on Atrovent due to severe coughing that came while I was sleeping, my legs are weak, and my voice is no where to be found.

The big question lurking in my mind is, how can I deal with this shitty situation without getting sick?

Getting some counseling,

Talking to someone,  or

Letting it go.

Honestly I don’t know.

But hey, nobody said life was easy and we know this better that any healthy person. There will be moments in my life  filled with grief, anxiety and so much more, nevertheless even if I’m tired most of the time, I need to pull through because I’m  a strong person and I don’t want to live in a bubble and I know neither do you.

Thanks for joining me on my path to wellness, talk to you soon.

MG & Sex: Security or Mystery

Dear readers, having a chronic illness doesn’t mean we can’t spice up our relationships with some mystery now and then.

Security or surprise

Even though my husband offers me on a regular basis love, compassion, and most of all security, sometimes I like to run away from that same security.

I’m an incurable romantic spirit.

I absolutely love to read romance novels and one of the things the male protagonist always has is the  “mystery” factor.  I’m not gonna get a thrill if my  protagonist is reading the newspaper in the kitchen counter.

The thing is, sometimes I ask myself  “Am I entitled to have that mystery in my life even if I have MG?”.

Well, I’ve come to terms over the years with this interrogative and have  come to the conclusion that not only me, but all of us deserve to have everything that a relationship has to offer.

On my own, it’s hard to come up with great ideas so I often get inspired by this amazing relation therapist Esther Perel, who by the way is a Ted Speaker and after  reading and listening to her I come up with an idea or two.

Now here comes the best part, as a person who has MG I have to be extra creative.  Now this can go in two different directions. One, we come up with new ideas or the other way around,we come up with no ideas.

You see my dear friends, it’s not bad at all to want more than we have sometimes.

Sex for MG patients, is a bit like every other thing in our lives.  We have to wait sometimes till the good days come around. That can add to the surprise factor, because in the moment you least expect it, Wham, you get to have one of those days.

If I’m having an extra extra good day, we go out for a dinner date, if not we stay at home cuddling and just talking about things only related to US. We leave everybody and everything out of the equation even if its just for a little bit.

When I want to wear a nice piece of lingerie or something nice for a dinner date online shopping works fine for me.  My secret for perfect fitting is that I shop at the same stores I used to go to and I try to buy the same lines of clothing or lingerie so I know how the sizes run.

Believe me, it’s all worthwhile the effort when my husband gives me the “delightfully surprised look” and words fail to express how great I feel about that.

So you see, my dear friends we all need security, but we also can’t leave out some element of surprise.  Each one of us gets to chose what that element will be. Don’t miss out on anything just because we live with a chronic illness.

Please, don’t forget to find meaning and purpose in each day, and to reach out to others creating bonds of sister and brotherhoods.

See you on my path to wellness.

 

MG & Sex : The Odd Couple

Dear readers, probably you’ve figured out what I’m going to be sharing with you.

Being honest and straightforward about it,  sex is a topic hard to breach because many of us (myself included) are hesitant to open ourselves to others because it makes us vulnerable.

Sex and Myasthenia are truly the odd couple.  One is vibrant and passionate and the other struggles with weakness and everything that comes with it.

blurred silhouette hand.
blurred silhouette hand.

I’ve been married for thirty years to the same guy.  I married the love of my life, my friend, and my high school sweetheart, however that doesn’t mean that we don’t face the same troubles all couples face when dealing with a chronic illness.

I’m not going to talk about the whats, whens, or hows of the sex situation, but about how I feel about having sex with a chronic illness.  Specially if you’re like me who turned forty  and began  feeling sick as a dog and bingo, a neurologist told me that I had MG.  The saddest part for me was that for most of my life I had been a healthy, vibrant and strong woman, so the last ten years have been a challenge.

Coming to terms with the new me wasn’t easy.

All of a sudden, the man I had chose to spend my days and nights became instead of my friend and lover, my caregiver.  He helped me with all the basics, and keeping our love life as it used to be was out of the question.

It was time to reinvent ourselves as individuals and also as a couple.

At the early onset he would worry to a point where it wasn’t even worth the effort, because his fear of  how I was going to do the next day was terrible.  He would remorse constantly over everything and  if for some reason I would become weak, he would blame our lovemaking for it. That became our passion killer at least for some time.

Things changed after overcoming a couple of scary situations I’ve lived through , and nowadays it’s all about the moment. I cherish the days I’m strong enough and we make the best of it. He no longer worries so much and appreciates each day as a gift.

But most importantly I never gave up on that side of our relationship because he was ready to shift his role and I knew that if we went there things would never be the same.

Dealing with a chronic illness is and has always been hard on me and I didn’t want to miss on the beauty of sharing those moments with him, plus I thought it wasn’t fair for neither of us.

What worked for us was just talking and keeping our thoughts and wants in the open.  There is no other way, I feel blessed that this amazing man is part of my life and hope that you too have a special person to share a moment that makes you feel strong and alive.

So, my dear friends reaching that point where wellness surrounds us is tough, but we need to remember that our bodies our weak, but our will is strong.  And that is precisely what keeps us moving forward. Why would we miss out on anything life has to offer?

Plan your life because it’s yours and only yours,  and find meaning and purpose in each day reaching out to others. When we give it a try, it’s pretty amazing.

I invite you to come along on my quest for wellness not only of my body, but most importantly of my soul