Monthly Archives: August 2014

Re-Runs Suck

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My hip X-rays showed mild degeneration and evidence of tendonosis on the left side. I have orders for MRIs for each hip. I think it should be MRI, singular, since my hips are right next to each other, like, all the time. My insurance, however, wants to charge it out as two MRIs so they can get more money from me. While seeing my PCP re: X-rays, he asked what meds I’m now taking. “Nothing.” I said. I am not taking ANY prescription meds at all. I take 2-3 benadryl at night with my wine. We agreed that we could try ONE new medication. Just one. We believed that the events of Insanity July 4th were due to Xanax withdrawal. So we agreed to try Cymbalta.

I took 30 mg of Cymbalta that night. Tuesday morning I had the shits, dizziness, irregular heart rate, anxiety, sweating and teeth clenching. So ended that experiment. I started back to work on Wednesday, still half-life-ing and with a heart rate of 125. That’s not ideal. During the worst of it on Tuesday I had made an appointment with a massage therapist, in the hope that massage can replace Physical Therapy. I got my gut settled down and kept that appointment. I would direct this statement at someone who told me awhile back that they don’t read here anymore because “it’s too depressing” that I AM SAYING SOME GOOD NEWS HERE BECAUSE MASSAGE IS AWESOME. Don’t say I’m never happy. Also, you are a shitty friend, end of transmission.

So I’m back to zero drugs, but with a weekly massage appointment. Is everything roses and unicorns and fluffy clouds and chickens running about behind my house? No. But there *are* chickens behind my house and I like watching them.

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Since I am not funny anymore, let me relate something a little funny. School has started, and I have made email groups of all my classes and sent those children all kinds of electronically delivered information. So this happened:

Student  is lurking for me. I say hello, and ask what he needs.

Student: I wanted to know if we were supposed to come in today. 

Me: Did you get my email? Because I said….

Student (cutting me off): Yeah, I got it. I just didn’t know if we needed to come in. 

Me: The email said class wouldn’t meet until next week and not to come today. 

Student: Yeah, but I didn’t know if that meant to really not come or if it meant you wanted us to stop by and check in. 

Me: It pretty much meant “don’t come in today” and just that. Don’t come in today. Okay? 

I return often to my office to look at my picture of Patient Bear.

 

 

Endless Loopy

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I’ve been awake since around 2:30 am. For whatever unknown reason I often jolt awake around then with my heart pounding crazily. Sometimes I get back to sleep after an hour or two, but by 5:00 am I figured it was a lost cause and got up to skulk about the house and wait for a decent time to grind the coffee beans without jolting everyone from their beds. It’s not that time yet, unfortunately.

Reading back over my posts this past year, I get the impression that I am stuck in a loop of the same thoughts, the same positions, the same decisions over and over and over again. I have a problem, I ignore the problem, I try to solve it myself, I go to the doctor, the doctor does or suggests something that I resist, I do it anyway, the problem becomes worse and sometimes I get a new problem on top of that. What is the sense in this? I’ve looked back at last summer and regretted the time and money spent in PT and OT and yet, here I am, doing it again and not getting better. Getting worse.  Why did I get off the bus at this very same spot yet again?

Yesterday was my 45th birthday, and I had a party. I invited just girlfriends, some new and some old, and we had a really nice time. Several people struck up new friendships and were delighted to find each other. My high school art teacher was there, Xena was there, my high school boyfriend’s wife came—it was fun. My back hurt all damn day. My hip hurt. My party shoes hurt. I told myself I was just going to ignore my stupid body for now, just focus on having a nice birthday and a fun party. I managed that, but I *really* needed to have slept all night.

Sleep and pain. Both problematic, both un-managed. At 2:30 am, I worried about spending too much money on the party. I worried about our plans to go to a nearby town and listen to Western Swing today. I felt like I couldn’t do that and I’d have to cancel the second half of the birthday weekend. I thought about how I’m worse off now than I was at the beginning of the summer. I worried about going back to work. I critically reviewed my party behavior and came up with things to chastise myself about that were nonexistent.  I worried about all my appointments next week. One Shrink visit, two PT appointments and an appointment with my PCP. We will go over the results of my hip xrays.

I’m tired of complaining about the same old things. I’m tired of feeling isolated and like EDS entirely dominates my life. The road out of here is hidden from me, but I’ve got to find the balance. Part of me is pretty sure that means closing the door on PT for good. But then what do I do about the pain that sent me there in the first place? No one seems to know how to answer that.

Medical Summer

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Summer is time I use to rest up from the academic year, engage projects that advance my skills and take care of any medical issues I put off during the school year. My expectation is that I exit Summer with completed projects, better health and an improved outlook. Summer ends for me in less than two weeks, and it has not been the sort of break I needed or wanted.

As extensively detailed here, there was the whole Xanax disaster, with the smaller disasters of Cymbalta and Ambien. There was the return to Physical Therapy to address the bulging disc at L5 in my lower back. There was the consideration and then rejection of the Medical Marijuana option. There was the unavailability of my rheumatologist and my subsequent decision to (mostly) fire him.

Last week, my PT did something that really affected my left hip badly. I could barely walk the next day, and finally after both my mother and my husband advocated that I do so, I called her. She had me come in, but then she started speaking uncertainly, saying how if she tried “A” it made me worse, but “B” seemed to make me worse, and, well, she just didn’t know…..

“Are you firing me?” I asked, “Because it sounds like you are firing me.”

Oh, uh, no, she said, “But, maybe you should fire ME, I mean, if it’s not helping.” Then she went on to detail all the options there aren’t for me. When was I to see my doctor? I don’t have a doctor, I have a harried, overwhelmed Nurse Practitioner and I don’t currently have an appointment. What about the Rheumatologist? Refused to see me until September, so: fired. What about steroid shots? Inadvisable for people with EDS as they are damaging to collagen and ours is already damaged/defective. Surgery is definitely not an option. Correct. Can’t imagine much beyond just splinting you, but I know you don’t want that. Is there someone who *does* want that? At what point was this about what I WANT? Also, my skin does not always tolerate splints, either. 

I left feeling really demoralized. We reconvened the following week and I pointed out to her that if she fired me, it would be closing another door, and there aren’t currently any more doors. I would have no team at that point. If that’s the reality, then I would have to accept that, but I wasn’t pleased about it. She decided that there might be some other things she can do for me and she also decided that maybe there really *is* something wrong with my hip (something she’s denied until now, figuring it was referred pain from my back).  So today I had an xray of my hips, which we have to do before the insurance will give us the blessing for an MRI, which is what we know we will need.

IF, however, it is what I think it is (torn labrum), we can refer back to the options there aren’t. Surgery isn’t an option. We can’t go too far with PT. I’m easily injured and slow to recover. Square one, the only spot there is.

At this point, then, I am worse off than I was in May. I am not taking any prescription medication. I have nothing for pain, nothing for sleep. My hip is worse than it was, my back is worse than it was. My “team” has gone from PCP, Rheumatologist, Psychologist and PT to a PCP out of ideas, a PT out of ideas and no Rheumatologist.  The Shrink is pretty much the whole team right now. I currently can’t sit comfortably for more than 15 minutes, I can’t walk very far without pain, I wake up at night due to pain from my hip or my shoulders or my back, and I’m about to go back to a very demanding  job.

I’m torn between going ahead and firing the PT, and then just flying blind until something unmanageable happens or sticking with it awhile longer even though I suspect it’s pointless and I’m just afraid to be alone with my reality. This is where I always find myself stuck, and it’s seemingly never ending. I am afraid work will be too hard for me, afraid I’ve lost too much ground, afraid it will not ever get better.

That’s not the place I wanted my break to end, yet in less than two weeks classes start again and we’re off and, well, not running. Off and limping.