I’m still running and people are still trying to kill me, nothing really changes

Hi.

In Florida we have two seasons.  Regular and snowbird.  Regular is basically two thirds of the year and Snowbird is when the people from up north migrate down like the birds to get away from the snow, get it?

snowbirds

Unfortunately most of them can’t drive.  I’m not profiling, it’s the truth.  Ask anyone who lives here.  You know who else can’t drive?  Teenagers and young adults.  It’s a fact.  I know this because I used to be one and I couldn’t drive at that age either. But teenagers and young adults today are distracted and stupid, and that’s even worse.

Over the weekend I was was walking through the parking lot at the local Walmart dodging the clueless snowbirds, and I finally thought I was in the clear when out of nowhere this idiot young guy came flying around the corner and literally tried to run me over and then did a burnout right in front of me.

what is your problem

I was stunned but I also had a conference call scheduled in a half hour and dinner to cook a shit ton of stuff to do so I just continued on but this lady and her husband had witnessed the entire event and she ran up to the dudes car and slammed her hands on the front of his car and then her husband ran to back of the car and whipped out his phone from his chained wallet and started recording video.  It looked like a redneck version of Dog and Beth.

At first I was shocked and then I was horrified as she said, ‘I’ve called the police, and m’aam, I’mma need you to stay here and testify cause you just almost got hit and runned by this dude right here.’  I politely backed up and told her that I really couldn’t stay because if I didn’t get back to work I was gonna lose my job and she seemed to understand.

So I walked toward my car as fast as humanly possible and headed over to publix where for once in my life I gladly paid premium prices.  And as I tell you that story I will end it by telling you it was the just the first time someone tried to run me over in the past few days and sadly, not the last.

I started steroids last week.  I’ve only been on steroids once before and at that time I remember feeling like I was getting better but this time I don’t feel that way.  This time feels different.  It’s hard to explain.  I am running but I seem to be getting very slow and I’m concerned about how I’m feeling.  It isn’t my lungs I’m concerned about but more my heart.  I can’t explain it really, it’s just a feeling but I’m not pushing myself too hard until I see my doctor again on the 5th of December.

In the meantime, I cannot shut my brain off and because of that projects are being completed, things are being organized, shit is getting done.  Even MacGyver’s Garage is about to get overhauled.  He’s pretty stoked about it too.  We’ll see how he feels about it afterwards.   Here are some of my latest projects in case I haven’t posted them yet.

The old owner’s of the house in Nokomis left this cabinet, it was actually the bottom of a china cabinet.   MacGyver and I used it as a media cabinet but I always had plans to restyle it, I just hadn’t had the time.  What do you think?

Before

after

AFTER

It’s still not finished.  I took the doors to Clearwater and have taken them apart.  MacGyver has taken the inserts out and I have some really old antique stained glass that I’m going to put in.  I think it’ll look really cool.

This next project is a coffee table we got at an estate sale while we were down in Nokomis one weekend.  It just needed to be refinished.  MacGyver didn’t want me to buy it because we really didn’t have anywhere to put it but I wanted to replace the one in Clearwater with this one because I felt like the one in Clearwater was too big and also it was five freakin dollars.

I don’t have a before picture but here is the after, after I sanded it all down and refinished it and after I hand rubbed it and after I I hit it with quite a few coats of clear coat.

It’s a mid century modern Danish solid Teak coffee table.

coffee table

Ain’t she pretty

 

 

 

 

 

 

Does anyone else find it hard to work the week of Thanksgiving?  I am finding it damn near impossible.  Well, let me put this another way, I’m finding it impossible to my actual work.  Projects around my house in my steroid induced haze are a breeze.  If I don’t get better soon, I’m going to need a new career path…

What are you doing for the holidays?

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?