My Journey begins and it only took 24 years

MacGyver went in for a physical for the first time in years just a few weeks ago.  The doctor spent a good amount of time with him assessing him and then sent him in for some routine blood work.  He then referred him to surgeon for some minor issues he was having that I don’t really want to discuss here publicly on the blog, but the point is, he got in almost immediately.

MacGyver went to the lab for his blood work the following morning which I believe was a Thursday and I swear to you the very next day as we were shopping in Aldi in Nokomis, the Doctor’s office called and asked if he could come in as soon as possible to go over the results.  So, we explained that we were not at home and made an appointment for the following Monday at which time the doctor informed MacGyver that his Cholesterol was close to 300 and he was going to prescribe a statin.

dont panic you might have a little cold

So, does this mean I don’t have to bring you hot soup and wipe your nose anymore? I kid.  But seriously, aren’t men like the biggest babies when they’re sick and don’t doctors take them way more seriously?

Well anyway, back to my story, but the short version, because it’s really very, very long, 24 years long to be exact.

One day sometime in 1994 I woke up and I could not get out of bed.  No, let me put this into a more accurate representation for you, I literally could not lift my head from my pillow.  It was almost impossible.

just leave me

It took every ounce of energy that I had and it took 2 days before I finally made it to a doctor and he took my blood and then a day later when I went back he told me that my TSH was 22.  TWENTY TWO.  I didn’t even know what a TSH was at that time and when I asked him what I needed to do, he said, “I don’t really know, I’m not an endocrinologist” but I don’t even think an endocrinologist can help you, I think you need a neurologist and without insurance, I don’t think you can afford one, and then he just dismissed me.  I will spare you all of the details of what I went through during that time but it took me two years to find a doctor who would finally diagnose me with a thryoid problem among other things.

It took me another two years to convince a doctor to do an mri and another year to find a doctor to actually let me see it, at which time I realized it said that I had inflammation in my pituitary gland and the infundibulum.

A few years later and a few mri’s later I now had brain lesions including a very worrisome one which is adjacent to the occipital horn of the lateral ventricle.   Some doctors thought it was MS and some thought was a vascular condition, and one even thought it was a TIA or a mini stroke.  I was shocked that they were so nonchalant about it.  As I was asking one of them about the numbness in my fingers and the pain around the socket of my eye, he actually fell asleep.  It was one the most humiliating experiences of my life.

Over the years there have been blood test with high calcium levels a couple of ulcers, one very serious stomach issue, uveitis, broken blood vessels in my eyes, and kidney problems, trouble breathing, bradycardia, migraines,  pulmonary nodules, blue toes, numb fingers, bronchiectasis and a slew of working theories and diagnosesis from pituitary adenomas, to stomach cancers, to lymphomas, to kidney stones, to celiac disease, to amyloidosis, to depression, to Costochondritis, to Raynauds, to trigeminal and glossopharyngeal neuralgia,.to asthma, to constipation and some of those things were right on but some were dead wrong.  

And time and time again I would hear, ‘you look perfectly healthy and I see nothing wrong in your blood work, you’re fine.’

But I wasn’t.

I have had Ct scans, MRI’s, X-rays, Ultrasounds, Bone Marrow Biopsies, Endoscopies, Colonoscopies, Pet Scans, Sleep Studies, and Echocardiograms.  I’ve been poked, prodded and pricked.  I’ve been questioned, judged and patronized.

And through it all I’ve persevered.   I know that I’ve been judged by family friends and strangers because of this invasion in my body that no one can see.  The invader that shows itself only randomly and then hides for sometimes years at a time determined to make a liar out of me but I’ve tried to rise above it all.

I’ve tried to heal myself through diet and exercise but I’ve known all along deep in my soul that I have a disease that was hiding somewhere deep down just waiting to show itself, if only someone would listen.

For 24 years I’ve had good years and I’ve had some bad years.  There have been stretches of years where I’ve felt like I was almost ‘cured’.   I almost believed that everything was better because I could run for months without a migraine and I was living life normally without any weird illnesses popping up but then the migraines would return with a vengeance and the shortness of breath or something new would show up.  I would get antibiotics and doctors would convince me it was fine and for a few months it really would be.  When you have periods of time where you feel almost normal you trick yourself into thinking that you are but that’s a dangerous game to play because you could be doing permanent damage to your body and that’s what happened to me.

If you know there is something wrong you have to be your own advocate, you have to fight for yourself, and you have to get your answers.  No matter what or how long it takes you, you have to do it.  I actually knew what I had 10 years ago but the doctor who diagnosed me wasn’t a specialist and my disease went into remission for quite a while and I also doubted the diagnosis.  However, once I was diagnosed with lung nodules earlier this year and then some other things showed up on my blood test I pulled out all of my medical records from the past 24 years and with the help of my pulmonologist and my cardiologist we figured it out.

The mystery was finally solved.

It is called the great mimicker for a reason, because it’s a lot like, well, a lot of other diseases, but believe me, it’s in a class all on its own.

Let me introduce you.

I already know a lot about this disease because I researched it 10 years ago when I was first diagnosed but a lot has changed since then so I am researching again.  Unfortunately even my doctors aren’t that familiar with all the latest treatments and research so we are sort of learning together.  Also because I didn’t seek treatment ten years ago, I know have permanent damage in my body that cannot be reversed.

I am angry that it took me so long to get to this point and that it took so long to get doctors to listen to me.  I am also angry that doctors seem to listen to men’s complaints much more than women’s.  That being said, I am thankful that my doctors are young and eager to learn, I am thankful that I am finally on the road to recovery and I hope you’ll continue with me on my journey because I plan to run every step of the way.

When I finally found out what was wrong the first pulmonologist told me that I would have to eventually give up running so I fired him immediately. Then I did a few google searches to find other runners or athletes with sarcoidosis so that I could connect.  The results were well, grim.  So, I’m starting a category just for my post on sarc and hopefully, I’ll find others like me and we can connect.  And if you know anyone who suffers from this please, send them my way.

As always, thanks for reading, and tomorrow, I’ll be back to my old self, except for now I’m souped up on steroids so it’s like me only x 100.  So maybe don’t come back tomorrow?  You decide, but you’ve been warned. You may also notice that I’ve edited this post like 100 times, that’s also due to the steroids and almost no sleep.  Sorry, but you should see my closets, it’s amazing what you can get done at 3 in the morning when everyone else is sleeping except you.

What’s the worst thing that has ever happened to you at a doctors office?

4 thoughts on “My Journey begins and it only took 24 years

  1. I’m glad you finally got a diagnosis but sad it took so long.

    I dont have to see a doctor often so the worst thing was when the doctor dismissed my back pain and said maybe I can’t run anymore. This time I looked for one that had a sports background.

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