Been awhile since I last posted.
Had a new hearing test. Showed that my hearing loss is fluctuating, and in a strange way they can’t explain. My hearing for high frequencies got slightly better, but my hearing for low frequencies got worse.
I was recommended hearing aids. At the time Henry Ford told me they looked up my insurance policy and it covered only $1,600 or $1,900 (i forget which) toward hearing aids, and hearing aids at Henry Ford range in price from $1,900-$5,900 (I am assuming that is per hearing aid, and so needs to be doubled as I need hearing aids for both ears). So I’ve been under the impression that I was somehow supposed to figure out a way to come up with $1,900-$9,900, which there is just no way I could afford the upper end of that. And I don’t know if the cheapest hearing aids would really be useful enough for me, it’s not the kind of thing I want to buy based entirely on “what’s cheapest”, but want to be able to consider “what is medically most beneficial”. This has had me stressed and down because I have real trouble hearing things in my day to day life and it’s frustrating to not be able to afford a solution to that.
Right before writing this up though I got some good news. I called my insurance company to verify the hearing aid info and they said that it is a % split, and they cover 80% of standard hearing aids and cover 1 per ear. I pay 20% of whatever the cost is. That changes my out of pocket price range to $760-$2,360, which I still don’t have but it’s a more realistic amount of money. That isn’t counting if I want to get an extended warranty which they don’t cover and they don’t cover repairs or replacements.
Gastro, PCP, Liver
Now for the longer and more frustrating gastro update. I think my last post was just after my ER visit. I pretty quickly after that was able to get in to see a gastroenterologist, who ran some test for general inflamation- negative, and certain infections- negative. He also ordered a procedure for further testing, but Henry Ford has this ridiculous new policy that I can’t just schedule the procedure when the doctor orders it, after the doctor orders it it has to go to a team of nurses to approve it (supposedly to determine if it would be safe for me to have the procedure done- I don’t understand why they think a gastroenterologist can’t be trusted to make that determination), and after approved then they call me to schedule. I haven’t gotten a call and have now called them several times inquiring about it- they say that it is still pending review and I just have to wait. Meanwhile I still get unbearable pain from eating, I’m losing sleep and missing work because of this.
After running out of CTO time again, from taking sick time for this, I decided that it is not acceptable to say I just need to keep waiting with nothing to address the pain now. Gastroenterology usually takes weeks to get into, is a $50 copay for me, and isn’t specialized toward pain management anyways, so I made a same day appointment with my PCP to see her this morning, which is only a $25 copay.
Unfortunately it did as much good as if I had thrown $25 in the trash. She said there is nothing she can do for the pain. She definitely wouldn’t prescribe any pain medication. She recommended I try tylenol… I’ve been getting severe pain, the type that when it’s the worst I can’t walk, that keeps me up at night, that for the abdominal pain I can only best describe it as a feeling like something is in my abdomen that is trying to claw it’s way out of me… but gosh darn it, I never thought to try taking some OTC tylenol for that!
I’ve taken tylenol. For awhile I was taking old cough syrup with codeine I had left over along with tylenol to try to get an equivalent of tylenol 3. I’ve taken ibuprofen and diclofenac. And I’ve even taken some tramadol that I got from someone else. Even the tramadol doesn’t touch the pain once it’s started. I haven’t taken any of these all the time to prevent pain- tylenol is bad in high doses, NSAIDs can cause ulcers if taken in high doses for a long time, cough syrup aint great in high doses for a long time either, plus I didn’t have that much of it, and definitely didn’t have the tramadol to use like that. So maybe some of these would be more effective if taken before the pain got bad, because pain meds often work that way, but I can’t say.
She also said it was a gastro issue and so I needed to see gastroenterology- which again, I can’t get in very fast to see. Plus I don’t know that I see the purpose of that, she wants me to gastro to treat the underlying cause. Gastro obviously believes they need the results of the procedure they ordered to determine the cause and treat it. So that’s just not an option until whenever the fuck Henry Ford decides to get around to it.
My PCP also, again, brings up me taking zofran for so long and how that’s not good which she always says in those tone like she thinks I’m drug seeking friggin zofran. It’s an anti-nausea med, there is no reason I would want to take it except because I am nauseous and throwing up (or more so, trying not to throw up- that’s what it’s supposed to prevent). Without it I throw up everyday, multiple times, and that sure as fuck isn’t healthy. I have many test results demonstrating the damage that the frequent, severe vomiting was doing to my health. And it’s not like her or any other doctor has another solution to the nausea and vomiting.
She also briefly brought up something from the CT scan that I missed in the report. Apparently it also noted a 9mm growth on my liver and recommended I follow up with my PCP about that. Which she mentioned then moved right passed and I forgot about it until after the appointment because I was distracted by my frustration at doctors just not giving a damn how much shit fucks up my life. But now looking back…. kind of feel like a growth on my liver is something that should be followed up on.
She also made a comment about how this has been going on so long. I had to remind her of the timeline I had already told her. This specific issue has been going on about 1.5 months. A long time, but not the >1 yr that I know is what she was referring to, when a lot of other health issues started or got worse. Which I never know how to phrase that. I’ve had chronic illnesses for a long time. Migraines since I was 10, Meniere’s since 2008ish, and fatigue & pain issues that went through numerous (mis)diagnoses over the years that started around 2009ish I think. But April/May 2017 something definitely changed. I had new symptoms and ones I’d had before, like fatigue, were even worse than before. Which I now know part of that is explained by the Intracranial Hypertension. Which I still suspect is itself a symptom of something else. So I’m annoyed at how she just bundles this up as if it’s been part of that from the get-go, and isn’t a new development.
I’m sick of doctors ignoring the toll this takes on my life. It would be one thing if I could just lie in bed at home when the pain is bad, I could cope easier with that. But I can’t. I have a job and staying employed is important to me. And doctors certainly haven’t ever suggested they think my conditions mean I shouldn’t be working due to disability, to the contrary they often downplay the impact they have. But then they ignore when I tell them how these things hurt my ability to maintain employment. It’s frustrating beyond words, my life just doesn’t matter to them. Life beyond that my heart is still beating. I mean actually living.
And I’m also sick of being cut into pieces and treated as small, separate, distinct parts. Oh, this issue is for neurology, this issue is for gastroenterology, this issue for otolaryngology, this one for ophthalmology, et cetera, et cetera, et cetera. Seems beyond belief to me that all these problems I have are just a whole lot of bad luck unrelated to each other. It seems something, yet unidentified, systemic is going on and leading to a lot of other problems. But of course it is unidentified because everyone only looks at their tiny part and if something relates to another part they send you off to someone to focus solely on that part.
I’m frustrated. I’m tired. I’m sick and tired of being sick and tired.