Anxious Sunday

Went without the mirtazipine last night.  And I’m trying to forgo the ativan today.  It’s going to be tough.  I woke up stressy and anxious, and it’s just lingering.  Usually, it fades for a time in the AM after I get up (if it’s there….it had been a constant but had faded this past week) then resurges again in the late morning/early afternoon.  Today, it was there when I woke up and it’s remained and built since I’ve been up.  I’m very disappointed.  I doubt it’s a lack of mirtazipine, it’s not supposed to have psych effects this quickly.  If anything, it’s probably just a lack of general sedation that’s affecting me right now.  The mirtazipine truly is very sedating, especially this early on and at this low dose (it has a funny response curve, apparently at lower doses, the antihistamine/sedating effects are stronger…go figure).

So I’m down that this is happening today.  Today, my husband is going to pick up my good friend’s teenaged daughter from camp and we’ll have her at my house until her grandparents come at some point (this afternoon?) to pick her up on their way to Canada.  I’m stressing about my husband driving the hour up a busy highway, stressing about what I’ll do to entertain a teen, stressing about whether her grandparents will come in to visit, whether they’ll have all their pets with them (I believe they usually take the whole menagerie up to Canada with them) and where they will stay if my friend’s parents come in to visit (it’s supposed to be the hottest day of the year so far today, highs in the 90s, not ok weather to leave pets in a car).  So stress stress stress and anxious anxious anxious.

Got this song in my head….

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reminder

A reminder not to take things too seriously.  In the words of the Indigo Girls, it’s only life, after all.

I need it this week.  Didn’t get the job I applied for, which is too bad.  I think it would have been a nice fit.  I don’t mourn the position, but I miss the little bit of hopeful feeling it gave me to have applied to it – like a $20 bill in your wallet or the muted pleasure of getting up on a Friday morning to go to work.  I had this sliver of hope until Thursday morning when I got notice that I was out of the running for the job.

Most of what’s been eating at me this week is work and housing related.

  • I’m still being fucked about on the accommodations request.  I received a call late yesterday afternoon from HR to follow up on a complaint I made about a harassing coworker (we met, god, months ago and they are finally now writing up the letter, and they wanted to check in and see how things have been going with that coworker).  At teh end of the call, HR adds a note on the latest “progress” on my health accommodation request:  We’re “slogging through” the extra information we asked you to get from your doctor, it’s still “vague on the date of onset” (of illness(es)) “and the anticipated duration, but we’re working through it”.  Holy shit, really?  I submitted that request in early January.  To me, this latest update says we’re looking for excuses to deny your accommodations and are hoping that we can make a case that your health problems don’t qualify as disabilities.  What a thing to hear.
  • I still work with morons.  It’s been hot this week, legitimately hot.  Over 80 several days.  On Thursday, I went to take my lunch break (which HR says if I take at my desk or in my office, where I have some control over the room temp, I can expect to be interrupted and no accommodation will be made to back me up on that) in the break room.  Earlier in the day, the A.C. had been on.  When I went up, it was like walking into someone’s mouth.  Warm, damp, and slightly smelly.  Clearly, one of the cold blooded bastards I work with had been too cold, but they didn’t even open a window for fresh (if warm) air.  Without thinking, I exclaimed “Oh my goodness, it’s toast y in here,” after walking in.  A woman who has harassed me at work over health stuff said “Yes, and I know how much you love  the heat so I won’t open the window for you.”  Nice.  Really really nice.    Yes, I documented it.  No, I’m not going to make ANOTHER official HR complaint against her because the last one was handled so ham handedly that it caused more problems than it solved.  I am going to mention it at the meeting HR set up for next week and I very much consider it to be contributing to a hostile workplace, so if I do need to make a complaint to the EEOC, you can bet this will be in there.  I left, left the building, as was recommended by HR in their response to my request to be allowed to take a break in my building, drove to a place to get food, checked my blood sugar in the parking lot because I was feeling ill, and yup, it was on its way down – 82 and dropping I’m sure.
  • We still need to move and don’t want to.  There’s nothing good listed – we love living in a single family house, can’t afford to buy yet, and desperately do not want to live in a multi-family again.
  • How about health and medical stuff?  Well, that was more last week but I suppose the influence of it isn’t gone.  No lab evidence of mast cell disorder, according to Endocrine.  I’m discharged from their service (and good riddance!).  The abdominal pain was nothing discernible – which I found out (two days) after spending 5 hours on Monday night at my primary care’s office and the hospital across the street.  Home at 11:00 PM after being up at 5:00 AM, what a way to start the week.

On the plus side, my primary care is still as great as ever and was not dismissive.  My most recent round of lots of medical appointments is over (the clustering is because I try to schedule appointments during slow times at work and we just had break last week), ending with seeing the genetics folks at the B.A.T.H..  The doctor was informative and kind. He’s testing to rule out EDS type 4, and although he thinks I may have it, there is no good test for EDS type 3 (hypermobility type – reading the diagnostic criteria of it is like a checklist of shit that is wrong with me). He did have some good recommendations though. And he was sincere. And kind. I think I mentioned that but it bears mentioning again.

So here I am.  Lots of crap things, one small bright spot.  My natural inclination at times like this is to vow not to get my hopes up again because the let down is so bad.  But the bad is bad enough, or enough picture of a trivia game card with names of medical specialities as categories.bad (depending on how you look at it) that I need something.  If I were going to use anything as a sort of getting me through life-saver, I find the idea of a potential job or a nice new home slightly more appealing than “hey that doctor was nice”.  Also, there is the inherent drawback of investing any hope into the possibility of a unifying diagnosis in that each step of the way comes with more appointments, more missed work, more chances of getting a not great doctor or doctor’s staff, or a scary test… I was joking with my husband that, regarding the medical stuff, I feel like I’m at that point in Trivial
Pursuit where you have all the pieces but you still have to role the exactly right number to land in the center and you still have to get the right question.

I think instead I’m going to try for the absurdist path.  Rather than getting caught in the hopeful/unhopeful mindset dichotomy, I am aiming for a more immediate one that I suppose I could call a temporally relativist take on positive existentialistm.  And toward that end, I am going to try to laugh at the laugh at-able and consider that when things are tough, I am at least young (ish) and have love, and a cat, and a comfy bed, and clothes on my back, and I’m continent, and, well you get the idea.

Here’s a fun thing I ran across this week.  Looking for more of this sort of thing as a reminder that there can be fun in the chaos, diamonds in the coal, flowers in the dirt.

theme song

Busy time at work, bad outcomes with HR, too many doctors’ appointments this month, nausea every night, applying to other jobs and wondering if I can do it, knowing we have to move and not wanting to.  But I’m getting by.

way down now…

Last night’s hypoglycemia was a real pisser.  I finally threw in the towel at 85 and went to bed.  That’s 45 minutes after a peanut butter cup, a fruit yogurt, and a glass of cider.  No idea what tanked it, and so glad for that alarm going off in my head that got me up and checking the sugar because if that much sugar only got it up to 85, I think it was well on its way to a seriously low low.  I’m not much good for remaining conscious under 60.  Today’s been better so far, it didn’t get below 89 at least.  But my blood pressure, crimeny.  79/56.  Makes me think of this song from my younger days:  

the world is very different since the robot uprising

Affirmative!

I got a roomba!  Works great so far – perfect for a neat freak with chronic fatigue.

change

I got three pieces of mail from my insurance company this week.  One telling me I wasn’t approved for the Celebrex I finally got my doctor’s office to order.  Then came a letter saying I was approved for the MRI the neurologist ordered.  And finally, yesterday, I got a letter telling me I was approved, on appeal/resubmit, for Celebrex, for 5 days a month.  I’m allowed to be in pain 5 days a month.  Unfortunately, my uterus, hips, knees, and ankles seem to have other plans.

I’m wondering if the PCP’s nurse, who processed both the failed and resubmitted authorization, has a clear notion of why I take the celebrex.  I don’t think she does.  Well, it might be more accurate to say I hope that she doesn’t.  My initial request was not frantic.  My follow up, nearly a month later when my period was about to start and I discovered that the authorization still had not even been submitted, was.  And it focused on my period.  Which is very painful.  This may be where the “confusion” came in.  But I’m disappointed.  Disappointed that she processed the initial authorization late.  Disappointed that she processed it only as for menstrual pain.  Disappointed that she processed it as being because “nothing else works” and not because I have a history of upper GI complaints that spans over 20 years.  Disappointed that she didn’t take even 2 minutes to listen to why I take to much pain medication, even though it’s all over my chart.  I understand it’s a big chart, even just the history that was taken in their office.  But that is why the 2 minutes of listening would have helped.  I could have mentioned the chronic joint pain.  In my last call to her, the one to ask her to resubmit, she told me that the doctor usually orders an enteric coated naproxsomething or another.  I told her I tried that and that the EC really doesn’t seem to help much with the gut.  So she resubmitted.  She was rushed, I understood.  They’re busy, I didn’t want to eat into their time.  I figured we had it squared away.  I should have pushed.

Honestly, the joint pain doesn’t respond terribly well to Celebrex.  The Celebrex does not take it away.  But it’s better than nothing.  And it’s better than advil or the other non-selective NSAIDS in that I can take it and it helps some and it doesn’t eat up my stomach, which is chronically painful and problematic despite eating carefully and taking 20 mg of protonix twice a day.  Lately, i.e. since July when my Celebrex stopped, I’ve been taking a whole lot of Tylenol.  Which also helps some.  Again, not a great drug to take in big doses.  On the plus side, I don’t drink. Not a drop, so Tylenol is not the worst thing for me to take.

You’d think that it wouldn’t be so hard to get pain meds that aren’t narcotics, that aren’t addictive.  Instead, my insurance company has cut me off or made it difficult for me to get two of my non-addictive maintenance drugs and left me with the addictive options instead (last summer, it was “oh no, we don’t cover that anticholinergic that helps you not poop your brains out and pass out on the toilet…here, have some donnatol, with phenobarb!”)  And I have to say, I’m disappointed that my new PCP’s office seems to be less advocating for me than selling me out in this most recent round of stiff the patient.

I was really hoping for better.  I have another appointment with the PCP on Friday.  It’s late.  5:30.  Probably later since he runs late anyhow.  MRI at 2:00.  Haircut.  Doctor after.  We’ll have some things to talk about.  In the meantime, I’m going to hope for a change.  How I’ve been feeling is intolerable, physically.  And that’s making me feeling horrible emotionally.  And I really need to feel like I have help right now, not half assery.

this too

Another day with the bad head.  I was feeling pretty decent yesterday.  About bedtime, the off kilter not quite vertigo came back.  And I woke up with a splitting headache this morning and the not quite vertigo is back again and has been with me all day.

I keep hoping that any moment of fading is the time it will go and not come back.  Long week ahead of me.  Lots of appointments.  Lots of needing to get around.  I know it’s childish to think it but really, I just don’t have time for this shit.  But what I really don’t have time for, or rather what I refuse to give the time to, is feeling shitty, feeling like this will never go away, and letting it get me so down that it seems nothing is possible.  So I’m gonna let it go.

we go together?

I was looking up vitamins, looking into what’s out there for doses, routes, and whatnot. This stopped me in my tracks.
Buy this item with Home ~ Dixie Chicks today!

And I’m thinking, wtf does a B12 sl supplement have to do with the Dixie Chicks? Do 9 out of 10 doctors whose patients listen to Dixie Chicks worry that their patients have pernicious anemia?

I wonder now what if I look up calcium supplements on Amazon will I find them paired with Celine Dion or Shania Twain.