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It's Been a Long Two Weeks

May 14th, 2021 at 07:08 pm

Until today I think I went about two weeks between posting.  I had my colonoscopy/endoscopy on the 3rd and it really threw me for a loop.  They gave me ketamine.  The anesthesiologist says it was the highest dose he had ever given anyone in his career.  I was in a lot of pain and kept waking up.  I don't remember being in pain, but I do remember waking up once and going ow, ow, ow, ow, ow, ow, ow, ow, then nothing.

I think a lot of the pain had to do with the position I had to lay in, which was on my worst hip and worst shoulder and it put pressure on my degenerative discs, as well.  But when I woke up my fibromyalgia pain was gone.  I had been in the middle of a bad flare up and it was the weirdest thing in the world.  Usually my pain background level is a 6 or 7 out of 10 and the really bad days can go up to a 10.  I woke up at about a 3 and it was very specifically the degerative discs and the joints with arthiritis in them.  And high as a kite.  It was so weird to be at such a low level of pain.  I'd forgotten what it was like to not have the fibro pain.

The high lasted a good 48 hours and then I was just kind of dissociative for another couple of days before I felt like I was in my right mind again.  The fibromyalgia pain has not come back yet.  It will, but for now it is turned off and I am getting stuff done.

My daughter had her lumbar puncture on the 7th and her spinal fluid pressure was super high.  It was supposed to be a 20 and it was at 44.  She was given a new medication to start on, but we had to consult with her neurologist because she is on another medicine that does not play well with others.  It is generally a drug that needs to be weaned from if you take it for epilepsy, but she takes it for migraine.  So we are waiting to hear back, but of course, the neuro doc is out of the office for the rest of the week.

They were going to see if they could consult someone else, but even if they do, that person may decide it still needs to be a consult with her neuro doc first.  So we may get nothing until Monday.  She can't start the new drug until we find out and she really, really needs to start it because her pressure is building up again.

People always go on vacation at the least convenient times, I've found, for our medical needs.  Ah, well, what are you going to do, but wait it out?

Once she does start this medication it should help her significantly.

My chiropractor mentioned the other day that they are testing a new fibromyalgia drug that is supposed to be really promising and they are looking for volunteers.  I have to look it up and see if I can find out about it.  I wouldn't mind being in a trial and neither would DD.

My husband, son, and I are all scheduled to get our first dose of the Covid vaccine on Sunday and then DD is scheduled for the 25th (she wanted a late afternoon appointment and that was the soonest they had).  We'll be getting the Moderna vaccine.  I will be glad to have that done with.

We have hit our out of pocket max on medical so now all of that is covered for the rest of the year.  We hit it before the above procedures so those were completely covered.  I will still be putting money into the medical fund, though.  DD still needs to get a pair of glasses.  We were waiting until this stuff was resolved.  And then DS needs braces.  We'll be doing Invisilign.  I have $3000 saved for that so far.  We have to go in and do a consult and get an estimate, but it will probably be around $6000 based on what I am seeing online.  Which I can save by the end of the year if I put $400 per payday into the Medical Fund starting next week.

I don't want to go into debt for it.  I am hoping the orthodontist is willing to start with $3000 up front and then either do a pay as you go or wait until January for the rest.  When DD had her braces the doc we went to wanted half up front and then the rest paid off in the following 3 months which was very hard on the budget and that was when we had 50% coverage on insurance.  We have no coverage now with the dental we have.

I had been hoping to use that money for our deductible and out of pocket max for 2022, but such is life.  We just never get ahead when it comes to medical expenses.  But at least we break even.

I need to get the ball rolling on trying to get DD on disability.  She's got hypothyroid, secondary adrenal insufficiency which makes her steroid dependent, ideopathic intercranial hypertension (too much spinal fluid on the brain), fibromyalgia, bulging discs in her back, traumatic brain injury, Raynaud's Syndrome, and Sjogren's disease.

I think she should qualify and then there would be that money to use towards her medical expenses as well as to give her a little something for herself.  We can handle the living expenses, it's her medical that has us barely making progress towards our goals.  She has to go off our insurance at 26.  I don't know if there is any provision for her staying on longer because she is disabled, other than 18 months of COBRA.  DH is supposed to check into that and what qualifies for it.

I am not sure if going on disability also qualifies a person for a government insurance like medicare or the other one, but we might be able to afford a policy for her with the disability at least.  That's what she wants it to go towards if she can get it, her medical expenses.  A private policy would probably be better just because so many doctors don't take medicare or the like and you are often relegated to a lesser standard of care because of it.  That has been my experience with Mom anyway.  It would help if there weren't so many run away costs in medical treatment.

Anyway, other than that we've been working hard in building the garden.  It is going slower than planned, but is starting to come together.  Once we make a bit more progress I'll post photos or a video link or something.

I've also been reading now that I have functional glasses.  I'm on my third book in 4 weeks, which may not seem like a lot to the avid readers around here, but for me, it is.  The first book I read this year took me 3 months because my glasses were so bad and it wasn't easy to read.  This is so much better, now that they raised the reading line a couple of mm.  It's such a tiny amount, but it has made a world of difference.

They are saying the library might open up on a limited schedule shortly.  I hope so.  I like to browse and by then I will be fully vaccinated.  You just don't stumble across books that might be gems if you have to know what you are looking for to reserve online.  I like the books I wasn't looking for.  Those are some of the best.

It is also looking hopeful that the fair will run this year.  They didn't have it last year and it was a major bummer for the community.

Not much else going on here.

3 Responses to “It's Been a Long Two Weeks”

  1. Dido Says:
    1621096405

    Lucky Robin, this page https://massairc.org/factsheets/healthcare-coverage-for-adults-with-asd-frequently-asked-questions-for-parents/#page-content suggests that children *may* be able to stay on a parent's insurance after 26 if there is a disability but it depends on the insurance company. Good luck!

  2. rob62521 Says:
    1621196883

    I agree with you; ordering the books online from the library kept me from finding some treasures as I browsed. Glad you are getting vaccinated and can soon enjoy the joys of browsing yourself in the library.

  3. CB in the City Says:
    1621273170

    I am glad I am able to browse at the library. Putting books on hold worked, but I'm like you, I like to look for the treasures.

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