I’m not okay, but I’m okay.

Do you know how sometimes you’re reading a really good book and then all of the sudden it starts to get boring and you want it to get better and you hope it will but it doesn’t and so you stop reading.  Has that ever happened to you?

I know it’s been a while since I’ve written and it wasn’t intentional. I just found it really hard to write anything.   My ability to over share and my quirky sense of humor have just been missing.  I’m not one to dwell on the things that I can’t change because I prefer to be the ray of sunshine in as many peoples day as possible, but lately, I’ve just been blue.

Im blue

I’m kidding, but not about feeling blue.  In fact, I’d say if I’m being completely honest, I’m slightly depressed.  But in order to get to my point and speak the truth I guess I need to start from where I left off and throw in a few facts from several years ago.  Buckle up, it’s a long ride.

Back in February I flew to Tennessee to meet my mom and I hung out with my family for a few days and then Mom and I drove back to Florida.  I had tapered off the steroids that my doctor had prescribed before I left Florida and while I was in Tennessee strange things started happening.

I started getting shooting pains up the back of my neck.  It feels like what I would describe as an electric shock that only last for a few seconds and then stops and then comes on again randomly.  I had gotten that same pain before, only it was back in 1994 when I had my first symptoms of Neurosarcoidosis and it was in the side of my face and my doctor called it Trigeminal Neuralgia although at that time he had no idea why I would have it and I’m pretty sure he doubted me.  A couple of years ago I got the same type of pain in my throat with the same sensation of an electric shock and I was told it might be Glossopharyngeal Neuralgia.

The neck pain wasn’t the only thing, there was also the pain in my shins that continued despite not running and icing constantly and I began forgetting things.  The forgetting things actually started before I left for Tennessee and I was forgetting things like how to get to the bank and the store when I was actually driving to them, even though I’ve used the same bank and gone to the same store for years.  And I forgot why I was in the store after I had gotten there several times.    And there were other things like eye pain, relentless pressure behind my eyes that would not stop and the need to pee a bazillion times throughout the night, skin rashes, bruises, thinning skin, and strange swellings that popped up here and there.  I just felt like I was falling apart and it scared me.  Luckily I had my Mom here.

So, after returning from Tennessee I saw my pulmonologist and explained the symptoms to her. She said that I could possibly be experiencing occipital neuralgia among other things but she was mostly worried because my blood pressure was very high, 178 over 115.  She also said that I may need to go back on medications if my symptoms were returning because my blood pressure and my calcium levels were really high.  She ordered an MRI of my brain and then she referred me to a rheumatologist and told me to get in there as soon as I possible could.  She also referred me to a neurologist but I couldn’t get in to see them until April so I’m still waiting on that one.

I got the appointment with the rheumatologist within a week and I explained to her that I had been diagnosed with chronic compression syndrome but that I hadn’t run and my legs still hurt very badly.  I also showed her where the pain in my neck is, where there is now a large swelling, and I told her about all of the other pains as well.  She listened to everything I had to say and then examined me.  Then she ordered a bone scan with contrast and an MRI of my cervical spine.  She looked at my past MRI’s and said that she wasn’t convinced I don’t also have MS, but I don’t think I do and I’ll discuss that with the neurologist in April besides I think Sarcoidosis is called a mimicker of diseases for a reason and I think it’s rearing its ugly head again.  Anyway, off I went to schedule the tests.

When I got to the scheduling department and handed them the orders they told me that the MRI of my head which had been ordered by my pulmonologist had been denied, but they scheduled the bone scan and put in a request for the MRI of my neck.  They also recommended that I call my insurance company to ask why the other MRI had been denied.  And thus began a cycle of me visiting all kinds of specialists, the specialists being concerned enough to order more testing and then me getting denied by my insurance company for any tests my doctors have ordered, other than blood test or x-rays.

In fact since February, I have been denied for 3 MRI’s, 1 Cardiac Ultrasound, a PET scan, and a recommended stay at the Mayo Clinic as well as the University of Florida.  The latter two are actual hospitals with sarcoid specialists who actually know a lot about this disease and could help me, but unfortunately my insurance company will not pay for any of it.

Blue cross blue shield sucksIn the meantime, when the results of my bone scan came in the doctor’s office called me and they told me it appeared that I have several stress fractures in both lower legs and one in the upper leg.  Typically to determine what is causing the increased tracer on the bone scan the doctor will order additional testing, such as an MRI or a CT scan which will show the damage in more detail, you know where this is going right, my insurance company isn’t approving any of those so my doctor ordered regular x-rays which didn’t show her anything.   So all we know is I have some stress fractures.

So that was that.  I’m just sitting here with some stress fractures in both legs, and as far as the pain in my neck goes, I’ve had a migraine headache every day of my life for 51 days straight.  FIFTY ONE DAYS!  Some days they are bearable, other days I can barely function but I have to keep going because I have an insurance company to fight with and it has seriously become a part time job.  And one that I will never be paid for.

This has all been super frustrating and I have spent hours and hours dealing with insurance people and seeing doctors who are also frustrated because they are limited in the testing they can do.  And sure, I can appeal with help from my overworked doctors but that isn’t really helping.   When I challenged the last MRI denial I was told that I wouldn’t be approved for advanced imaging unless it was absolutely medically necessary as stated by my doctor.  So the doctor resubmitted her request as medically necessary and the insurance company got another ‘specialist’ to say it wasn’t medically necessary.  Mind you, this specialist has NEVER seen me but that’s how the system works.

When I complained about this to the insurance company they reminded me that since the doctor ordered the tests, I could still have them, I’d just have to pay for them myself.  So I asked the customer service lady if she had any idea how much some of those scans are she recommended I start a GoFund me page, you know because apparently the 750 dollars they receive for my actual insurance EVERY SINGLE MONTH is not enough to justify any advanced imaging.  They say it is covered in the benefits but they require prior authorizations and that’s where they get you, because they never approve anything.  When did it become okay for insurance companies to determine my treatment as opposed to my doctor?

health insuranceAnd that has been my life thus far in 2019.

Don’t get me wrong, it hasn’t all been bad around here, it’s just that since February every time I sat down to write I just couldn’t.  And then one day I went back and read some of my post from the early days and I was really proud of some of those post.  Some were really funny and some were really informative.   It was really interesting until I got to the last few months and it then it went downhill.

I feel like since the first part of 2019, and maybe some part of last year, a lot of my posts were boring and I sounded like someone I don’t even know.  It felt like I was just posting about the mundane and ordinary things but trying to make it sound interesting because I didn’t want to share the whole truth, and it felt so fake.  I had somehow turned into the very same type of blog that I hate.  I had become that book that starts out really good and then gets boring and never recovers.  So I stopped writing and I promised myself that I wouldn’t post again until I felt like writing about, not only the good, but also the bad and ugly and if I don’t feel like writing at all, I won’t force it.

And now that I’m back I hope you won’t get bored of all my diatribes regarding my insurance company and doctors, but I’m sure I’ll write a lot about both of them in the coming months but it doesn’t mean that’s all I will talk about.   It just means that some days are better than others and you might get me on a funny day, an informative day, or a pissed off day but rest assured, it’ll be real.

On a scale of 1-10 how happy are you with your health insurance company?

Have you ever been denied for a medical procedure or test that your doctor ordered?

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?