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?

Most small pulmonary nodules are benign but….

Prepare yourself, this is a long one.  According to the Cleveland Clinic, there are two main types of pulmonary nodules: malignant (cancerous) and benign (noncancerous). Over 90% of pulmonary nodules that are smaller than two centimeters (around 3/4 inch) in diameter are benign.  My nodules are only 2-3 millimeters.

Because my nodules are so small, a biopsy is not really an option and neither is a pet scan and besides that, the Pulmonologist didn’t feel either were necessary because they are so small.  The only concern that he had was that they are located in the upper right lung and if they were cancer, this is most likely the place they would be located.  He wants me to have a follow up CT Scan in 6 months and if they haven’t grown, I should be in the clear, as far as lung cancer goes anyway.

That’s the good news.  The bad news is that I failed the Spirometry test.  Apparently, I can breathe in but not out.  That didn’t make a lot of sense to me because when I had breathing problems before it was as if I couldn’t breathe in enough air.  I never felt like I had a problem expelling it and I mentioned this to my regular doctor and also the fact that this had only happened in the last year and the only thing that I could think of that was different was that I was taking Topiramate.  So my doctor and I looked it up and realized that breathing problems, bronchitis, and even pneumonia had been reported with that drug.  I mentioned all of this to my pulmonologist and he dismissed it immediately.

It pissed me off.  A lot.  I mean a whole hell of a lot.  No one knows my body like I do and I am NOT an idiot.

The pulmonologist said that chronic bronchitis or smoking when I was younger caused this.  I told him that I had gone to a pulmonologist years ago (about a year after I quit smoking) and had several lung function tests and scans done and everything was fine.  There were no signs of disease and I haven’t smoked in years.  He then insisted that I have COPD as a result of chronic bronchitis.  So, I told him that I had not had bronchitis at all in the previous 10 years, only in the last year, since taking Topiramate.  And I had had it twice in the last year with little coughing and no mucus at all.  I also told him that the day I stopped taking the drug I could breathe better and that every day it gets better.

And just because I need to prove things to people to see if they are open to learning, or idiots that should be written off, I showed him the sites where many people had complained of respiratory issues with Topiramate.  He said no one should go to the internet for medical advice.  So, I showed him a case study that I found in the American Journal of Medicine about a woman who almost died from acute eosinophilic pneumonia as a result of taking Topiramate.  He said that it was a rare case and he didn’t think my case was related to a drug at all.

But I do.  And I feel strongly about it.  And I have my regular doctor on my side because she believes it too.

I had MRI’s done a year and a half ago and they showed no issues at all.  I have never had breathing problems in the past and I’ve been a runner for years.  I scheduled a follow up in six months and he wanted to prescribe an inhaler but I don’t feel that I need it so I politely declined.  He then said that he did find it perplexing that I’m able to run for miles at a time despite what the test showed.  He also admitted that things didn’t really add up but he still refused to believe that this may all be drug induced and he said that with COPD eventually, ‘my wheels will fall off the wagon’, whatever the hell that means!  Admittedly, he said he is not a runner, is fairly sedentary and needs to exercise but cant understand why anyone would want to run.

I won’t be at that follow up appointment.  I’ve already scheduled with another physician who specializes in immunology and allergies and focuses on issues regarding the lungs.  Unfortunately, my insurance company will not pay for the visit because she isn’t in the network but I don’t care.  I will curb my shopping for the next year if I have to because she was highly recommended and I am not fucking around with my health.

And for the record, I ran three and half miles this morning.  And it felt amazing and healthy.

Thank you to everyone for the prayers and well wishes.  I won’t stop until I find out what’s going on, I can promise you that.  And I’ll still be running when I’m 102!

Bloody eyes and MRI’s

MacGyver has my cold now and he didn’t really feel like coming down to Nokomis but we had to, and if you have to be sick all week I guess it doesn’t hurt to be sick in a place like this.  It’s pretty much our paradise.

Nokomis

That’s me or rather my fishing pole hanging off the dock because… why not?

Anyway like I said, we had to come down.  I had an appointment and after running 5 miles on the Legacy Trail yesterday morning, I went here:

Doctor office

A few weeks ago I was having some pain and tightness mostly in my back and it wasn’t going away so I went to see the chiropractor.  While I was there he took my blood pressure and I don’t think anyone was more shocked than I to see that it was critically high because typically it is seriously low.  My heart rate was actually lower than normal and it caused some concern. Those two things may not seem like such a big deal but there have been a few other things too.

For the past year or so I’ve been dealing with occasional blue toes.  The thing is that once they turn blue, it takes days for them to go back to normal and there is no rhyme or reason to why it happens, it just does.  The other alarming thing is my eyes.  I’ve woken up several times with broken blood vessels in one or both eyes. Oh, and there were those two times I woke up with a blue bottom lip…. You would think that those three things combined would scare me into seeing a doctor but they didn’t.  If I have a tingle or a pain that I think may prevent me from running or a cold or the flu, I turn into the biggest hypochondriac on the planet but blood in my eyes and blue toes, meh, it’s nothing.

It was ultimately the migraines or rather my family’s reaction to them that scared me.  They’ve gotten worse than ever before and I’ve begun to lose my speech during them.  The last time I lost my speech and my vision became very blurry, and then one side of my face went numb.  It was scary.  MacGyver said it looked like I was drunk but I lost all memory of what happened after I got the headache.

And that’s why Monday morning, I was here:

The doctor will see you now

Answers can never come quick enough, especially when it comes to matters involving multiple issues with your health.  I spent a lot of time with the doctor yesterday and even though my blood pressure is starting to normalize naturally, we need to get to the root of the problem so that we can fix it.  Obviously there is a reason these things are happening and that’s what we’re looking for, the underlying cause.  This is where that saying patience is a virtue comes into play!

So while the answers will be slow at least were headed in the right direction.  Today, I’ll be going to the lab for lots of blood work.  They’ll be doing the usual CBC, Metabolic Panel and such.  They’ll also be testing my Sed Rate and my C-Reactive protein and there will blood work to test my kidney and liver function.  The blood work is just a starting point.

The next step is an MRI of my brain.  I’m waiting on the insurance company to approve the MRI and the imaging center but  I hope I can have that done asap because my doctor would like the results before I go back to Clearwater later in the week.  Besides, there’s nothing like dealing with your stupid insurance company when you’re having brain scans, good times.

doctor testsSo, that’s all we know right now.  I’m telling you this because I said I would talk about it when I knew more but really, I don’t know anything.  The doctor has an idea as to what she’s looking for but until there are more tests, I don’t want to speculate.  So, that’s where I am and why I am where I am.  Make sense?

Don’t worry though, it’s not all medical tests and blood work, in fact, I’ve spent every spare moment on the trail, running, fishing or canoeing and I’m loving every minute of it.  (The doctor said slow running is actually helping to lower my blood pressure and that it’s good for me.)  It’s been therapeutic really because if all I had to do was sit around and wait for doctors and my insurance company to get on the same page, I’d go crazy(crazier)!

This is my 'it's time to fish' face!

This is my ‘it’s time to fish’ face!

See, I’m having fun because, fishing!

Last night MacGyver and I took out the little canoe and he caught a small redfish right at the end of our canal which only made me want to fish more.  Unfortunately, this is Florida and no sooner than I got the fishing fever the noseeums starting biting and we had to head back home.  Plus we were in the canoe which is really boring if Mom isn’t there. Nobody canoes like my Mom. She brings the party hard, trust.

the canoe

What this boat needs is a mom!

We will definitely try fishing again today.  MacGyver is feeling a little bit better and once the blood tests are over later in the afternoon, I’m sure some fishing will be just what the doctor ordered!

When is the last time you went to the doctor?
Ever had an MRI?  What part of your body did they scan?
Do you have high blood pressure? If you do, does running help you?