Making Rheum

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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.  While several of my doctors are just soooo sure I have an autoimmune condition, he’s not entirely sure.  He’s not entirely sure I do not have an autoimmune condition, though either.  He was really kind and he listened to my symptoms.  He said that he thinks that unfortunately I was probably dealt a bad hand and that my problems are likely related to my Ehlers-Danlos Syndrome but he wants to see me in six months after I will be thoroughly off of my Prednisone.  He said that, after being on the steroids for so long (nearly a year), it could be masking things in my blood work making it look like I don’t have an autoimmune condition right now, but that after I come off of my steroids if I do have an autoimmune condition it’ll be more obvious.  So that’s what we’re going to do.  We’re going to keep tapering (but slow the taper down, he says!) and recheck my blood work in about six months.  Alrighty.  We like this plan because it seems really sensible and like he’s taking the best approach to things, honestly.  The other doctor was just going to start me on some pretty serious autoimmune suppression meds (much more serious than high dose steroids) and at least this doctor has a bit more of a laid back approach that just throwing drugs at me.  Let us be completely sure before we jump on things, yes??

The only really 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 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 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 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 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.