It's a long story, but it's where I've been and what I've been dealing with. There's TL;DR version at the end, but I recommend you read through this to appreciate the American Medical System and my journey through it.
Middle late August, I got home from the middle of nowhere. Every year, I go to a convention and see long time friends. After it ends, I head to my secluded grandmother and see what she needs, mostly landscaping work. BUT THIS was 2020, which means there was no convention, but I still went to see my wonderful grandmother. I don't know if it was the stress of catching the "T-virus," or too much landscaping labor, or just bad luck, but when I got back I felt off.
It started with a mild throbbing sensation when I put pressure on the back of my head and a mild unsteady feeling when standing. I work at my desk standing up, so yeah not good... My family has had some bad luck in its medical past. My mother was fine one check up, then had stage four breast cancer the next. She died many years later, but I always wondered how her body could go from no signs of warning to everything is failing. My Aunt died in her twenties from breast cancer and I've heard the story of how the doctor looked at the spot on her breast and said, "You're too young for cancer." She died within the year. My uncle came down with a rare and aggressive form of MS. He became a prisoner in his own body and it scared me when I visited him to see how that could happen to a person. I wanted it to go away on its own. It didn't.
During September, my father and friends had suggested it was an inner ear infection. It made sense to me? Balance issues, maybe not the throbbing, but there was pressure... near an ear... sort of? I just had to beat an ear infection. Yeah, this "ear infection" wasn't going anywhere.
October arrived and I sought medical help. I went into a local clinic thinking the doctor would look at me then give me some anti-biotics. I got to go inside almost immediately, because I didn't have covid-19. In fact, I think they were happy my issue wasn't Covid-19 related.
Unfortunately, Local-NP looked over my ears and said, "You don't have an ear infection." The panic hit my face, I requested a scan immediately. She denied it telling me that "You're too healthy for that."
She diagnosed me with BPPV. Haven't heard of it? Neither had I. You have calcium deposits that get lose in your ear canal and cause vertigo episodes. It didn't really sound right to me, but she's the professional, right?
She said, "It's odd for someone so young to have it," and sent me to a specialist to confirm this. That was a new patient charge and an extended visit charge.
In comes November, the Ears Nose Throat Specialist tells me I have a left nasal deviated septum and a right nasal enlarged inferior turbinate, but no BPPV.
She says, "How long have you had trouble breathing?"
And I reply, "I don't have trouble breathing."
She frowns and asks, "You have pain in your face from your deviated septum pinching the nerve."
And I reply, "I don't have pain in my face. It's in the back of my head." She jams an injector into my nostril and fills my nasal cavity to burst with Afrin.
She smiles as if she's fixed me, "Better?"
And I confusingly make out a, "No?"
Aw, the bitter smell and taste... that lasted the rest of the night when I'd nearly have a stroke: numb arm, chest pain, burning sensation, heart pounding a mile a minute. That's right, I'm allergic to Afrin. Who knew? I do now. But did I know I was at risk for a stroke? No, I thought this was a new symptom of my whatever and simply spent the next three hours meditating on my back while my heart decided it wasn't a horse in a race.
I should have stopped going to this "Specialist" right then and there, but sometimes brain not think good. During a more detailed review of my life leading up to my problem, I mention mold. Yes, there was mold I had to deal with. Her tone changed to concern and she suddenly prescribes an inflammatory steroid, Prednisone. I'll let you read the side effects. She also wants a culture test done, because I've a fatal brain infection.
"Can I get a scan?" No, and my insurance won't cover the culture test. Fuck it, I'll take the hit. So she stuck a long thin cue tip up my nostril near my brain I suppose? And then I got to wait at home getting worse unknowingly hitting check boxes on the list of side effects for my daily use of a steroid.
Two Weeks. For two weeks I waited for a $500 cue tip swab to see if I would test positive. I looked up how it kills people, why wait? Apparently, I would seizure and be paralyzed forever or seizure and never stop until dead. I slept every night with a phone next to my pillow and a belt next to it. I suppose I thought I could both grab the phone to dial 911 AND put the belt in my mouth to stop from biting off my tongue during an episode.
One week into the two, I decided I'd call them since no one thought it was important enough to tell me whether or not I'd live. I got told I had tested positive, but they'd discuss more about it when the test was finished. So that's it then, I'm probably going to die I thought. So many things unfinished. Near the end of week two is when I'd finally get their updated call. Do you know what it does to a human-being to sleep like I did wondering when the seize would claim me? How do you know a seizure is coming? I looked it up, you don't. No seizures ever came.
By the time they told me the results were actually negative, YES NOT POSITIVE, I had entered the stages of hypertension. My symptoms were head rushes and headaches, unsteadiness, intense throbbing in the back of my head, and nausea. I had stopped sleeping. The steroid helped things by INCREASING my already high blood pressure. Oh joy, what was wrong?
The ENT wanted a scan done and I rejoiced, "Finally!"
She finished, "Of your sinuses."
I asked if that would also see if anything was wrong with the back of my head and she quickly responded, "You don't have sinuses in the back of your head."
I demanded that she schedule something for my brain. She refused. I refused to do the sinus scan.
She told me, "I'll schedule anything you want, but the insurance company won't pay for it, but I'll put the request in." I solemnly accepted these terms as she chewed me out for not having a dedicated primary care physician. I briefly thought that this was my fault for waiting. New patient charge, culture test, multiple visits.
When the idea was given to my insurance, they had their own medical professional view my file and they determined I was too healthy and didn't need any kind of scan. It didn't matter, I would never get those scans, because the ENT lied. The MRI place called me to discuss my Sinus scan and I promptly asked them about a Brain Scan. No order was ever given, I told them to cancel it. I would receive a call later while I was laying in bed in constant pain and no sleep. Her advice to me was to find another doctor.
Which led me to seek a primary care physician. This Doctor took one look at my sleep deprived zombie pain-ridden self and said, "It's your blood pressure."
I asked, "What is my blood pressure?"
He said, "It's high and we need to bring it down." It didn't matter my story. It didn't matter what I said or even my symptoms come to find out, he was always going to say, "It's your blood pressure."
I asked if I could get a scan done. He told me, "No, you're too young for it to be something serious."
His method of treatment was everything had a pill and he was more than happy to give those pills to me. He took some blood and gave me Lisinopril a blood pressure medication, Clonazepam an addictive sleeping sedative, and Meclizine anti-vertigo medication.
He boasted, "In one week, you'll be a new man. If not, come back and see me."
And in one week, I was back at his office with lowered blood pressure and worsening throbbing and pain that now went down my arm from the back of my head. I was still having trouble sleeping. When I used the sedative, I couldn't feel the pain, but I could feel the throbbing from the back of my head all the way to my right finger tips. At times it felt like pins and needles or that my hand was going to burst. Medications plus new patient charge.
"It's your blood pressure." And he gave me more pills, this time to add to my growing pharmacy I got Cyclobenzaprine a muscle relaxant, Melatonin, and I should take Ibuprofen daily along with everything else instead of Aspirin.
And again, "In one week, you'll be a new man."
I would spend thanksgiving with a head filled with medications, laying in a bed, and sitting in a chair. At the least my blood pressure went down and I slept more than zero hours... I would stay this way into December still with throbbing in the back of my head, unsteady balance, and another instance of vertigo when I tiled my head to the right.
During December, I stopped trusting my primary care physician. I got the impression he would rather write prescriptions than actually fix me. I didn't want more pills for me to take FOREVER. I had been doing my own research and I thought that maybe I'd nailed it down to the area of where my neck connects to my head, so I sought a neck specialist.
Do you know what she did first appointment? Gave me an x-ray.
Do you know what she said first appointment? "Why hasn't anyone scanned you?"
GOOD QUESTION.
She took one look at that X-ray and said, "You need an MRI." I could've kissed her, but we're both wearing masks and I didn't think she'd appreciate it. My neck was too straight! The muscles in my neck had been so tight that they'd unnaturally straightened my neck taking away the curvature.
Why? Hell if I know, they keep asking me about an accident, but I don't remember anything like that. The MRI for my neck revealed a slightly bulged nerve in my spine on my right side. Go figure, my right arm was going through pain from a pinched nerve in my neck. I'm told that most of my symptoms should have been apparent to any doctor with proper training. I guess all the previous professionals skipped that day of medical school.
She prescribes Ketoprofen to deal with the pain. It costs 1,364 dollars add that to an MRI, X-ray, Physical Therapy scheduling, and, of course New Patient Charge. My insurance covered this thank whatever Gods there be.
However, she's concerned about the vertigo and unsteadiness, so she refers me to a Neurologist within the same medical group. Oh boy, another new patient charge.
Remember my Uncle who lived as a prisoner in his own body with MS? I can't think of anything else during my visit with the Neurologist. The nurse said my blood pressure was high, I can't imagine why. The Neurologist runs me through some tests and can't find any horrible signs of a neurological disorder, but she wants to be sure. She likes to knock out the really bad things first. I'm okay with this approach. She orders an MRI and MRA of my brain, but I have to tell the front desk that my insurance is ending at the end of the year and I have to switch to new insurances.
I like this medical group, I want to keep them, so I ask the lady at the desk what insurances do they take? She can't be bothered to tell me. Printing a list or copying and pasting it into an email is too much of a challenge I guess. I ask if they take Molina, because I'm thinking about Molina from my browsing of the Insurance Market Place. She says, "Yeah, I think, but check with them. Always check with them, not us."
My financial situation allows me a special deadline for getting new insurance, so I don't have to decide by the 15th of December, which is good. It gave me time to sift through things. I find that Molina doesn't cover this new medical group. Okay, I look through the runner ups and I stop on Ambetter, which according to the United States Market Place, covers this group. I look this up on Google and use it's "Check Insurance" and Ambetter is listed for them. Google also states under their feature, "Always check with the provider."
I call the provider Ambetter and ask a sales rep specifically, "Is this place in your network?" and he seems to look something up and tells me they do. We have a joke about the name of the road they are located on and it's a wonderful phone call. Everything is set, right? Oh sweet summer child I was.
My old insurance terminated my policy a week early, I guess they were angry that I was quickly making up for the six years I'd never used them. And my new insurance wouldn't start until January 1st. I realized something was wrong however when I kept getting notifications to pay my new premium even though I had. I tried to log in to my Ambetter account, I couldn't.
It turns out I'm not who I say I am. That's odd, because I know I'm me. This isn't a story of identity theft, this is a typo on my birthday. My birthday was wrong, and because of that despite knowing my name, address, number, last four digits of social, etc Ambetter can't let me know anything. SO I have to find out what's wrong, how wrong, and why it's wrong from the US Health Care system, it's off by a day and it's probably my fault, but the entire system is broken from this. Wonderful, I have to reapply, refill everything, and it'll still take a week before it's fixed. I find myself now giving the wrong birthday to people at Ambetter just to not have to explain the whole thing. So I spent the end of December in a limbo unable to get anything done medically, but everything should be set for the new year.
Enter January 1st, when I try setting something up and I'm told by the front desk that my medical group with all my doctors, my physical therapy, my everything is not covered by Ambetter. I have never yelled so much at a human being before in my adult life. The same woman who couldn't be bothered to tell me what insurances they take was now telling me they didn't take mine when everyone else said otherwise and SHE was right. You know that guy? The one I talked with at Ambetter. Why would he lie? Well, here's my theory that I'm going with, because I can't think of anything else besides he's some malicious spirit of evil. I think he didn't use their computers to look up my question. I think he used his smart phone instead, specifically Google's check insurance feature. The provider used a feature that says to check with the provider. I don't know whether to laugh or cry.
I suspect this, because the man at Molina did this while I was on the phone with him. He couldn't get their website to work and neither could I, so I found that funny. It's this or the evil spirit option and I'll have to hatch some sort of exorcising mission if it's the latter.
But my treatment is now a mess. The physical therapist gave me exercises to do at home to fix my neck, which is kind of him until I find a new one. The neck doctor wishes me well. And the Neurologist suggested it may be some sort of un-ruptured brain aneurysm, but until I get a brain scan no one will know. And I'm stuck waiting two weeks until I can get a scan on the 20th just to wait for results at a new doctor with what will be a NEW PATIENT CHARGE.
I'm done worrying, I'll either die or I won't. Either my issue is all my neck and the PT will fix it before I need that scan or it won't. And that's that. I literally don't fit Emergency room criteria at this point, so I have to just sit here.
If you read all the way through, thank you. I honestly hope you're having a better time right now. And if you are a patron, you need to know that you oh faceless person who gives me money when I get off my ass are a positive influence. I have family and friends, of course, but when I logged in seeing the familiar usernames still in my list, it made me feel happy. I am feeling better physically, I'm no longer spending most of my time in a chair or bed. I'm spending more time here at the work desk. I'm doing those physical therapy exercises. I hope to be back to you with good news, but for the moment I am here.
Too Long, Didn't Read?
I went medical professional to medical professional going from bad to worse to okay with insurance problems and idiots only to NOT know what's truly wrong. I still don't know if I'm okay and I didn't want to just keep giving all of you every diagnosis I was given until I truly knew myself. I hope you had happy holidays and I hope the new year is treating you well. I'm at the least at this computer now.
