Sunday, May 24, 2020

On the Merry-Go-Round Once More

It has been a truly emotional week - both good and bad. You would think I would be used to riding this mood roller coaster by now, living with bipolar as well as going through all kinds of crap throughout my life, but it's still hard to deal with.

First, the really good news... two months after I first filed for unemployment because of COVID-19 issues, I finally received it, including some (not all) of the weeks I filed in the past but didn't get anything. This has been an incredible stressor off of me, as even though I had a decent amount of money still out due to the way my clients pay me and I had a little bit saved up, I knew it wouldn't last forever. I tried not to worry, but I had a huge underlying stress every minute of every day during that time of uncertainty.

So, that's a big relief.

But medical issues... Ah, medical issues... Many years ago I wrote an article about the issue of not finding answers to my medical issues - or at least not ones that help. I updated it and posted it last year. If you go to https://www.spotlightonstigma.com/2019/09/on-merry-go-round-again.html and read it, you'll see more where I'm coming from.

The past couple of weeks I've been spinning again on that merry-go-round. I virtually saw my sleep specialist after the last failed attempt at using a BiPAP (similar to CPAP) machine for my truly horrible sleep apnea. I finally got to see a rheumatologist after suspecting I have fibromyalgia for many years. I also actually asked my primary doctor to prescribe something for the GERD (acid reflux) that she told me I have, but that taking an OTC acid reducer didn't help (hoping the prescription will help more). I also was finally able to reschedule my appointment for my cataract surgery after COVID-19 postponed the original one.

Second, the good news... I guess. My rheumatologist did confirm that I have fibro as well as an overarching syndrome called Joint Hypermobility Syndrome. Though hearing you have yet another lifelong, chronic condition isn't good news in and of itself, he does have a treatment that he uses that most rheumatologists don't.

In fact, that's why I decided to pursue a diagnosis - my daughter switched to him after already being diagnosed with really bad fibro but the doctor told her there was nothing she could do other than yoga or water aerobics to help the pain. Always before I had assumed that there was nothing that could be done about it, so why take the money and time to pursue that particular diagnosis?

The frustrating part about that good news is that there was a mix-up with calling in that wonderful prescription and I have no idea when I'll be able to get started on it. I'm hoping for one day later this week, but I just don't know.

At least the fibro diagnosis only had one frustrating part. The sleep apnea was an incredible debacle...

So, third - the pursing of an alternative to the BiPAP machine. I was originally diagnosed with both really bad Obstructive Sleep Apnea (OSA) and Restless Leg Syndrome (RLS) in 2007. RLS was able to be somewhat controlled through meds but I tried various types of CPAP machines and different masks and couldn't handle any of them. After trying and trying, I gave up. If I knew then what I know now, I would have saved myself a lot of time, trouble, and money.  But there's nothing I can do about that now.

(Note... CPAP and BiPAP are two versions of the same type of OSA therapy. Throughout this I might use them interchangeably but they mean the same type of thing.)

Then around 2014-15 I decided I'd try again. I thought maybe the technology was better with the machines or there was another new therapy that would help. The same thing happened. No matter what I did, I couldn't sleep with the BiPAP going.

This time I took it a step further... I went to an ENT. He told me I had several issues that made me a horrible candidate for CPAP/BiPAP therapy - a severe overbite that put my lower jaw too far back, a deviated septum, and a large tongue (gross to think about). Surgery could fix the first two but jaw surgery is a big surgery with a long recovery period, so that was out. Because fixing the deviated septum alone didn't seem like it would help that much, I gave up again on this therapy.

Something the ENT has stuck with me since that visit. He actually got mad... saying something like "These neurologists should never prescribe a CPAP without consulting an ENT who can sometimes automatically tell if the patient can use one or not." So all that time I fought with the machine was for nothing! I never would have been able to use it. But there's nothing I can do about that now.

After seeing the ENT and finding out about my jaw, my neurologist prescribed a custom-fitted mouthguard to bring my lower jaw forward. Getting that mouthguard was a huge mess in and of itself, which I won't go into. But I tried the mouthguard and even went back for another sleep study solely to see how much it helped. During the follow-up visit, my neurologist said that it wasn't a big improvement and since it was a pain to deal with, I also abandoned that treatment even though the mouth guard cost like $750 out of pocket. But there's nothing I can do about that now.

So... a few more years roll around and I had a routine visit with my cardiologist. He told me that there were was a brand new treatment for OSA that didn't have anything to do with tubes or mouthguards. It's a hypoglossal nerve stimulator (brand name "Inspire") which basically is similar to a pacemaker for your airway, keeping it open throughout the night.

I decided to look into this option. I got a new sleep specialist (who was the first one I really felt had my best interest at heart and didn't just want to push CPAP treatments). During our first visit, I explained my history and that I wanted to look into this new surgical option. She told me that because it was new, they were pretty strict on the criteria to qualify and at this time I wouldn't due to my high BMI (which, ironically, is probably at least partially so high BECAUSE of the apnea... sigh...)

She did, however, tell me that the technology once again had changed and would I again try the BiPAP? She also told me that the settings the last neurologist had used were way too high and it was no wonder that I couldn't stand it.

In addition, she asked why I was no longer using the mouthguard. I told her that the last doctor said it wasn't helping. She said that it was, just not enough to "cure" the apnea. This kind of ticked me off. I could have been using it that entire time and could have had a little better sleep. But there's nothing I can do about that now.

Against my better judgment, I gave in and decided to try the newest, latest BiPAP machine and ending up getting a mask that was hot off the press. I really thought this time it would work.

I was wrong.

Once again, I tried and tried. This time I also added in another mouthguard, but one I didn't have to see a dentist to get (you fit it yourself). I didn't really try the mouthguard much without the BiPAP, as I thought my jaw was part of the reason the BiPAP wasn't working. In hindsight, I should have at least kept using the mouthguard when the BiPAP therapy wasn't an option. But there's nothing I can do about that now.

I also had sinus surgery, as I knew my sinus issues were at least part of the reasons I couldn't use the BiPAP. The sinus surgery corrected one of the issues but didn't help enough for me to be able to use the machine.

Life got really busy and so I just put the machine in the closet and just prayed that I wouldn't have a heart attack due to the apnea (one of my biggest fears). I didn't want to follow-up because she acted like she had exhausted all of her options anyway, so why deal with one more doctor's appointment?

Then a couple of years passed. I thought that maybe by now they would have relaxed the qualifications on the nerve stimulator and I might qualify now. So I made an appointment with her to discuss it. It takes months to get in to see her and guess when my appointment hit?  Yes, right as the COVID-19 restrictions made most doctor's offices close. But there's nothing I can do about that now.

I had to wait a couple more months for the appointment, but thankfully I was able to get in to see her virtually relatively quickly. I suggested trying the nerve stimulator and said that maybe the standards were less now. She checked with the ENT who does this procedure. (See? An ENT consult IS needed for sleep apnea issues!)

This is where it really got messed up. She told me that they require a recent sleep study - within 3 years. My last one was too old. I haven't yet mentioned this but I HATE sleep studies. I can't sleep; I have horrible anxiety; and I am more than miserable the entire time. I had said I would never do another one. But if it was required, what could I do? I agreed to do the sleep study appointment.

She also told me that they would have to do an Upper GI to see how my airway opens and closes in order to see if I was a candidate for that treatment. An Upper GI isn't fun, by any means, but it's much easier than a sleep study.

After I got home, I realized that I might not qualify because of the way my airway opens and closes (I assumed that if my BMI was still a rule-out, I would find that out early on). So I called the ENT's office and asked if I could do the Upper GI first. If it showed I was still a candidate, then I would do the updated sleep study. After all, I had two sleep studies that showed I had it and it doesn't cure itself, so I definitely still had OSA. The scheduler supposedly asked the doctor and said that I had to have the sleep study first.

Well, the day came for the sleep study. My anxiety rose all day even though I tried really hard to keep myself calm. One thing I comforted myself with was that I didn't have to have the RLS leads, which I hate more than all the other leads combined (except the nasal cannula - it's #1).

I got to the clinic and when the tech came in to hook up the leads, she reached down to my legs. This wasn't my first rodeo so I knew what she was doing and I objected. I won't go into that whole story, but let's just say I lost and had to have them. If I had thought about it ahead of time and specifically asked my doctor to mention not to do that part of the test, I probably wouldn't have had to do it. But there's nothing I can do about that now.

I'm also not going to go into the details about the sleep study. It was just as bad as I remembered... no, it was worse. The ONLY thing that was good was that I was exhausted so I was able to sleep a little on the front end of the night. I knew from past experience that an hour or so of data is enough so I knew I had enough by the wee hours of the morning. I was able to leave at 3:00am, which was wonderful (though I was messed up from the anxiety and lack of decent sleep for a couple days afterward).

But I was glad it was done. Now I should be able to at least get to step two towards the nerve stimulator treatment, right? WRONG!

My follow-up with the ENT was two days after the sleep study. Once more, I won't go into all the ENT said, but the main point was that the nerve stimulator wasn't an option because of my BMI. WHAT?! So I went through that sleep study for nothing?!

He gave me some other options, none of which are really good options - soft palate surgery (which is mentioned twice is really painful), jaw surgery, which I already knew was major surgery with a long recovery time, and a tracheostomy, which "wouldn't be that bad because I could plug it up during the day." WHAT?! A trach?! Jaw surgery that takes literally months to heal? Soft palate surgery that is really painful (and doctors never admit that something is going to be painful so it must be really bad).

I got home and spent the day extremely depressed. That horrible sleep study (and the huge copay) may have been for nothing. As of right now, I did go on and make the appointment for the Upper GI test, just to know my options - exactly which of the procedures I would need to get done. However, I might cancel it. I already know I would need the jaw surgery and that's the one that has the longest recovery time. I just can't be off work that long. However, I might cancel the appointment and just keep praying that the apnea won't cause something like a heart attack. After all, there's nothing I can do about that now (or at least nothing I feel I'm willing to do about that now.)

And last, the cataract surgery. This blog is already way too long but I wanted to mention it. Right now the first one is four days away and the one on the other eye is two weeks after that. I'm again really nervous. Everyone I talk to says it's not a big deal but it seems like no medical procedure is simple for me. But hopefully both surgeries will go well and for the first time since I was a preschooler (or maybe earlier), I will be able to see clearly without glasses or contacts.




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