Fucked up disease

This is one fucked up disease. 
10 tablets a day, one injection and no change in sight.
No one , not even my Docs see any hope of change. Pain so agonizing had to leave work in the middle, walking continuously weaker, and balance worsening. Hands clumsier.
No I am not depressed. Still will go to work in the morning. Still will continue studying for my masters . Still will laugh with my daughters. Still will take the bus to Jerusalem to see my granddaughter. It’s my disease so let me bitch about it without lectures on “don’t give up hope”. 
May 30 is World MS Day. 
Support local MS Research and Support groups
Together let’s Kiss MS Goodbye (or at least have a good snog ourselves)

I have reached my fork in the road, and I took it

Today was my last day of work at the hospital after deciding on a new path that will be more attuned with my illness. At the end of 17 years of dedicated service to work, 17 years of professionalism and care. 17 years of striving  to be up to date and at the top level of knowledge in the field and using that knowledge and care to help patients,  to teach younger doctors and other staff members to help  set standards.

I guess  maybe it was too much for me to expect a “good bye” a “good luck”, “be well” a cursory hand shake, anything.
To be truthful , one nurse came to shake my hand goodbye,and one colleague said good luck while passing in the hallway.

But other than that,

Nada
If I had any doubts about the change, they ain’t there no more.

 

It ain’t necessarily getting any better

It ain’t getting easier to put on a “stoic” face and present a business as usual approach. It’s bloody frustrating not being able to use my hands as before, to walk without assistance to even get out of a chair. And knowing there is no bloody cure.

Adieu Superman

Or in other words, when something can go wrong it will, to me.

I used to consider myself Superman.

No not super smart or super rich or super sexy, but super healthy.                           The epitome of health and fitness. A long distance runner of 35 years. A cyclist. Someone who parachuted, papraglided and scuba dived. A man who loved danger and lived on the edge (as long as spiders weren’t involved). A man whose day didn’t begin before a 10 k run, and whose weekends included longer runs, mountain and road cycling and of course long days and nights as an orthopaedic surgeon.

And then…..

MS appeared. I became weaker. Vision faltered. But I continued on , albeit at a continually dwindling pace. Until, gradually the damages of unremitting attacks and havoc to my immune system took their toll. Nowadays I can’t walk without a cane. I can’t look to my right without seeing double. My fingers clumsy, all my limbs weak and spastic.

If it ended there, all right, that’s expected of MS. Right?

But this year everything else about my health seems to be  falling apart.                   Beginning with a bought of Swine Flu (despite being vaccinated) which had me in hospital for a week. Afterwards chest pain, dyspnea and heart palpitations yet again had me hospitalized and I was diagnosed with thyrotoxicosis. Destructive auto immune thyroiditis. And sure enough within three weeks my thyroid destroyed and now I am hypothyroid. Just as my thyroid function stabilsed with medications  I developed high fever , headaches and eye pain.  Two days ago I was diagnosed as having viral meningitis.

What can go wrong next? What organs are left undamaged?

Aside from my health it’s been a great year. My three older daughters all succeeded in their respective fields. My eldest won awards for her thesis, appeared on the Deans list and as sought after for her Doctorate. And when most unexpected found love.  My second daughter, also found love, married and is on her way of making me a Grandpa. My next youngest excelled at work and is about to embark on her scholastic journey, accompanied by her love. My youngest brings me love and happiness on a daily basis with her laugh and baby’s enthusiasm for life. I took up new hobbies of baking and photography, and have been pretty successful at both. My parents are a source of pride and support. And my wife is forever loving and supportive.

Not only that , but I kicked my fear of spiders. OK, it took shock therapy with a fucking big Australian Huntsman spider, and a close encounter of the close kind. Hey, but it worked!!

So I’m not superman, I’m just a very lucky and very privileged man to have found such love and support so close to him. Lucky to have become aware of what truly counts in life (and it’s nothing to do with counting kilometers, heart  rates and calories) even if I had to find out the hard way.

And if I may say, it’s going to take a lot  more to stop me !

so what else can go wrong?

Blessed with yet another autoimmune disorder, destructive thyroiditis. So destructive I went  from hyper to hypo in one week.

One week , crazy and angry, night sweats, palpitations, dyspnea and the next fatigue, lethargy and swollen limbs.  What a roller coaster ride. Strewth!!!

at least the hypo should be easier to treat.

is this an attack?

for the past two days a radical  turn for the worse vis a vis walking.

leg very weak, walk with a “parkinson”like shuffle.

not the harlem shuffle , a slow shuffle, with a general feeling of unsteadiness and wobble of the non glamorous type.

no I’m not drunk I wanted to yell to the lady who shielded her young children as I hobbled and wobbled  past them on the side walk.

left work early today and cancelled thursday (tomorrows a quiet work day in any case)

don’t know if I’ll go to my Doc, I won’t take the roids in any case

 

when the going gets tough (revised ed…)

divine retribution?

I guess a shrink would have a field day or two or more , unraveling  the diverse causes that shaped my psyche-

but what it boils down to in the end is that whatever they were,

and  for whatever reasons

the decisions were mine

and then, when

recognition and reconciliation  finally begin to sink in ……

the shit hits the fan.

First the shock of the diagnosis, then the muted acceptance (“”hey this isn’t that bad”").

But as time goes on and the progression challenges how I always viewed myself and I find myself struggling to come to terms with rapidly declining cognitive and physical abilities (“”OK I get the message this is pretty bad and going places I don’t want to”").

I begin to wonder.

Why Me?

Divine retribution?

Some unique twist of justice, to give the disease to one who when the going gets tough will just get tougher

or will just  be too damn stupid not to know better.