I’m a Zebra

After my three mile, didn’t stop once run on Monday things went South.  On Tuesday I went out to run and got really tired right off the bat and so I had to walk a lot.  In fact, it was mostly a walk with some running interspersed here and there.  And then later that night I had a twinge of pain in my shin so I decided not to run on Wednesday and since I had an appointment with my doctor that afternoon, I brought it up with her.

injury

Turns out that this running injury and even the Sarcoidosis aren’t the only things I need to be worried about.

medical tests

At the end of last year my pulmonologist decided to run a few test to check my immunoglobulins.  Immunoglobulins are a type of antibody and our bodies have five of them.  IGG, IGA, IGM, IGD, an IGE.  IGG also has subclasses known as IGG1, IGG2, IGG3 an IGG4.  I had previously been tested for any problems with my immunoglobulins because I have food and environmental allergies but apparently no one had ever tested my subclasses.

The good news is, all of my Immunoglobulins were normal.  The bad news is, 3 of the 4 subclasses were deficient.  Since late last year, my doctor has performed the test three times and all three times, I was deficient in my IGG subclasses.

I see an immunologist on May 20th and from there I will have antibody testing to find out if I suffer from a Primary Immunodeficiency.  I am finding out that it is not uncommon to suffer from several autoimmune diseases and that people with immunodeficiency disease are more likely to have autoimmune diseases yet nothing about my health is common.

Doctors have this saying, ‘When you hear hoofbeats, think of horses not zebras’ but not in my case, because I’m a Zebra.

zebra

Zebras are pretty exotic so I’ll take it.

As far as running goes, the doctor said to give it a day or two and try again.  She said if I continue to slowly ease into it, I should be fine and in the meantime, I’m still weight training with MacGyver so that’s something. Maybe in a few months I’ll be a ripped zebra.

What’s the worst medical thing you’ve ever experienced?

Three miles, THREE MILES, I might be a little excited…

You know what feels great?  Running three miles first thing in the morning without having to stop and without any pain.

This is actual footage of me running around Nokomis this morning….

wonder woman

Okay maybe it wasn’t me but I felt like that.  I have to remind myself not to get too excited though because I can’t just jump right back into running every day, so on the days that I do get to, it’s epic.

So, if you didn’t catch it, we’re in Nokomis.  We came down Sunday morning for Easter with family and we were going to go back to Clearwater tonight but it looks like we may be here for a few days.

Last Friday there was a rain storm and a lot of wind and the dead oak tree in our back yard decided it was time to drop a large limb, so it needs some tending to.  And MacGyver is putting a coating on the bottom of the boat and there are many other things to do as well.  Fortunately, I have a lot of work to do so here I am on the computer, you know, working.

pretend work

I actually do have to get some work done but I wanted to pop in and post a quick hi and say that I hope you enjoyed the holiday.

What did you do this weekend?

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?