Making Rheum

Stuck in bed still

This week is mainly more medical updates (though not entirely), which is just so boring and ugh-inducing.  You’ve been warned though, so you can always back out now!

We’ve seen the rheumatologist.  He was terribly dismissive and he wanted to blame my Ehlers-Danlos for everything. That’s great I guess. I mean, Ehlers-Danlos doesn’t cause kidney damage on its own so we still need to figure out the cause. Guess I need to find a rheumatologist that isn’t.. A total.. Creep? I mean, it’s not like every single one of my specialists have been aggressively telling me that I should be seeing a rheumatologist and chastising me for taking too long getting in here. It’s not like I needed to get help for over a year but none would take me because there are almost no rheumatologists that take my insurance out here. ::Shrugs::

Lots of wasted time and time off work and terrible side effects on meds and whatever else. He told me that being on the steroid was probably masking an autoimmune condition if I did have one. (Without looking he sounded super dismissive, huh?) and that I should continue tapering (but did tell me I should slow my taper way down because I was going too fast)! He did say that in a couple of months we should check my blood in case there’s anything worth seeing in there. (Dissmissive Dave! Thanks for seeing me, this was totally worth the trip!) And so that’s what we’re doing now. Probably going to go back to our other doctors who will be mad at me and try to send me to another doctor who pays attention to me when I get there. Great. He barely looked up from his computer while I was there. It was. Spectacular.

The only superbly crummy news he gave us was that it is best to wait three months after getting completely off the Prednisone before doing the hernia repair surgery.  Balls.  He did say that if I absolutely could not stand it anymore then to go ahead with the surgery but to try to hold out as long as possible because I’ve been on the steroids for so long.  So we’re going to try to hold out as long as we can, obviously.

We got a phone call the other day that we finally got a referral for a primary care physician who takes my insurance!  SWEET!  My first appointment with the new doctor is in April.  Sheesh.  Ugh.  At least I have an appointment though.

As I’ve mentioned before, I’ve been stuck in bed with a parastomal hernia for close to three months (though it has been nine weeks since we first ordered a belt to try to get me some support so I could be up and around moving with it).  Well, the first belt arrived within three weeks and was the wrong size.  We called the place that measured me, they told us to call the medical supply store.  We measured me ourselves and found the correct part number.  The correct part number was then called in to the medical supply store and we waited an additional six weeks.  That belt arrived this week.  Guess what??  They sent me the exact same belt they sent the first time!  It was not the belt we had asked for.  It was not the part number we told them we needed.  Master Pravus called them on the phone completely angry.


He was pretty angry.  We realize the first time was because the place we went measured my ostomy wrong (Gob is not 3.5″), however, when we gave them the correct part number the second time and called them on the phone and explained everything the second time there was just no reason why they didn’t type it in properly.  I was so excited when my new belt came and I thought I was going to be up and around!  Laying in bed most of the time is awful for a million reasons and it isn’t making anything easy.  This is just so frustrating and ridiculous.  Before this whole mess happened I had worked my way back up to 2100 steps a day, now my goal is back down to 500 steps per day and I’ve only hit it three times so far this month, just barely.  Awful.  I just hope they send the right belt soon.  This is so completely ridiculous.  No matter how many times we call (and we call and check on things politely all the freaking time) they always seem to get it wrong.  Oh.  My.  Flipping.  Lord.

Not.  Glamourous.

In all fairness, they screw things up with all of my supplies all of the time.  They send the wrong bags.  They send the wrong wafers.  They send the wrong barrier rings.  They forget to send the powder, or the gel packets, or whatever.  Our order is almost always the exact same.  This company is just awful.  We go down there at least twice a month to try to straighten things out in person and they still get things wrong.  It’s awful.  For a medical supply store they really need to straighten things up.  People need their supplies.  If I run out of ostomy bags, I’m literally shit out of luck.  There are no other ostomy suppliers in my area.  They are the only company in my area and they don’t carry my bags “standard,” due to my mucotaneous separation that, yes, I am still dealing with. I need special bags and they have to be special ordered.  So if they aren’t in stock, then I’m out of luck.  Joy.

Master Pravus is pretty ripshit.  He’s so angry that every time we call them and try to fix things they continually fuck our order up – and here I am still for the most part either trapped in bed or trapped in my chair.  It’s so ridiculous.  :/  Gimme.  My.  Frigging.  Belt.  It’s going to be at least another two week wait.  At least.  Ugh.

Nap time with Frankie has been going slowly.  I’ve had a couple more nap time sessions but I still haven’t fallen asleep for any of them yet.  Not completely asleep, anyway.  I’ve sort of dozed on and off here and there, but not really “deep sleep.”  It’s hard to get actual sleep in during the middle of the day.  Master Pravus says “Of course it is.  Napping is a skill, that’s why we’re practicing.”  Maybe with time I’ll get it, but this is a new thing for me, and something I’m not really used to.

It has been a fairly dull week because I’m mainly still stuck in bed.  I’m getting out for little snippets when I can, and I try to go out with Master Pravus in my wheelchair to run errands when they are short errands (one a day, or short Zoo jaunts for morale).  We got to go out the other day when it started to snow which was kind of fun because snow is my favorite.  I really love the snow.

I’m so eager to be more up and around, but it’s going to be at least two more weeks, it’s looking like.

Patient Kitty, I must be.


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