Tag Archives: Anxiety

Circular Logic of Tail Chasing

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At some point, perhaps, I will learn. I will finally, for the last time, put myself and my finances through the process of having something investigated only to emerge from that process poorer, more frustrated, and with the answer I already had: I have Ehler’s Danlos Syndrome, and I will never feel “good” again in my life.

I spent $139.00 clams to get the MRI of my shoulder last week. That’s a nice pair of boots, or almost halfway to a pair of BedStu boots. (I KNOW RIGHT?) I had to go in to work late, and the tech was running late, and someone else there wanted to talk to me about my stalker sibling’s made up medical problems (because they are WAY more interesting than real problems). The tech assured me the doctor’s office would have the results the next day.

The short version of how obtaining the results went can be summed up thusly: PCP’s office decided not to answer their phones all day the next day, PCP was out of town, I got the results Friday via a text of the report he got faxed to him. There was a lot of anger, frustration, tears and cursing during this process.

The results? AC arthrosis, which is the same as arthritis except the word arthritis indicates inflammatory change and arthrosis is degenerative change without an inflammatory process. Just in case you wanted to know that. Here are other fun facts about this:

  1. PCP doesn’t think this explains the pain.
  2. I think it might.
  3. There’s nothing, not a goddamned thing, to be done about it.
  4. PCP wants to now go through the whole process again, but with my neck.
  5. But there’d be nothing to be done about it.
  6. And it would cost me the other half of those boots up there.

When will I learn? This time? This is how it is always going to work:

  1. Something hurts.
  2. It hurts all the goddamned time.
  3. I have to modify my life.
  4. IT DOESN’T MATTER IN THE SLIGHTEST THAT WE FIND OUT EXACTLY WHY.
  5. The answer is always this: I have EDS, and I will never feel good again. The end.

Oh my, yes, that is a negative outlook, I agree. But it’s also true. The other thing is, why do I feel like it’s more legit if I know the exact why? Part of me was wanting a torn rotator cuff even though that would be career-ending. OH. That’s why–I am looking for what I feel will be a legit enough reason to leave my job. Thing is, I already have a legit reason, because I have EDS, but I want an iron-clad out, not a soft, hard-to-explain, I-don’t-look-sick reason. I want something that is so clear that I don’t even have to admit to myself that I might be leaving simply because I work with one of the most impossible people in the world and I am starting to give up on the idea that I can win,and also, I am tired of this person taking so much of my energy when right now, I have trouble carrying my own belongings into work each day.

I can hardly carry my own shit, and once I manage to get inside with it all and put it down, I spend the rest of my day with a micro-managing tyrant with the tact and professionalism of an angry rhinoceros. I expend HUGE amounts of energy trying to buffer this person, in whose hands my leash was placed (after FIVE YEARS of working to get it out of their grip) by the new Department Chair, who has no idea what sort of monster he created. The rest of us do, because we all admired how hard it was to get myself off the leash in the first place and that the monster had finally been shrunk down just a bit.

We talked a lot, the spouse and I, about whether or not I can or should keep working. Let’s face it; this person is not worth what I am spending on them, and, despite the money and time and Dr Googling, my shoulder still hurts. And it’s not going to get better, any more than my hands, or my back, or my neck, or my ankles, or my wrists. Will I choose to remain trapped in the rough waters of this medical system? Or will I decide to liberate myself from it, from angry rhinos, and from feeling like I should hang on just a little longer? I don’t know yet, but the trend is going in the Give Up direction.

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Why the Slow Start?

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Eating is something that obviously over the course of human history, can really easily get screwed up. Nearly everything affects the digestive system–nearly every drug you can take has gastrointestinal side effects on the warning label. Your emotions can both affect the gut and are also greatly affected by it–the majority of one’s serotonin, for example, is produced in the gut. Our obsession with our digestive tracts is obvious to anyone who watches television or wanders the extensive aisles of related products in any store.

I grew up with an iron-clad stomach. I could eat absolutely anything, and I did. There was a period of serious stomach trouble when I was 7, but my mother finally realized that it was due to having been on antibiotics the better part of a year and started me on brewer’s yeast and plain yogurt (appalling, both, but it worked). I considered it a point of pride that I went years and years and years without ever vomiting. There’s a Seinfeld episode on that very subject, where Jerry’s streak is ended by the dreaded nemesis of the black and white cookie.

I felt his pain.

I’ve had two nights this week wherein I didn’t wake up at 3:00 am and lay there, heart pounding, until 4:30 or 5:00 am. I’ve been very careful about not eating dinner too late and for the most part Gnawing Stomach has not been part of the scenario. I suspect I am breaking through the Propanolol, and considered asking the cardiologist if there is an extended release option for night time. But, then, I started having heartburn.

Why yes, Propanolol can cause that. Are any of you familiar with the syndrome whereby you realize something (Propanolol is relaxing my esophagus too much and causing some difficulty swallowing and acid reflux, for example) and yet you choose to deny that this is happening because you’ve checked with all of your internal registers and seen that the problem count is already too high and you just don’t have room for another one right now, thanks very much all the same? I am sure I am not alone.

The complex intersection of that with emotional stress is, I suppose, why I threw up until after midnight last night. I saw the new Shrink yesterday, and a lot of what we talked about had to do with what that person with the personality disorder is doing to continue to try to get my attention. I mentioned that it was my perception that as I ignore all attempts at contact and we get closer to the holidays, this person is going to find themselves in a greater and greater state of agitation and will escalate their behavior. The last attempt was about a week before my birthday in late July, messages on my office phone that I didn’t find until I went back to work. My cellphone already blocks this person and her spouse, as does FB, and my email address is also unknown to her. The new Shrink was very supportive of my position about not letting this person into my life again, and also said, “I keep seeing this image of you on a rickety wooden bridge with alligators below you.”

I will be opening my psychic business soon, if any of you are interested, because I walked into my house from seeing the new Shrink to find that this person is now using Etsy to message me. Turns out you can’t block someone on Etsy. The holidays were referenced, which suggests that I am entirely right about how things will go over the next few months. The new Shrink better put her boots on, as things are going to get pretty deep pretty quick around these parts. Like a fool, I ended my day with chile cheese fries and guacamole salad, and then I went to bed with a glass of wine….

….with what felt like a ticking time bomb in my gut, with fire racing up my throat and a sense that if I lay down correctly it would all just flow out like lava. Or….not. But it was an ugly feeling, kids. Like Jerry Seinfeld, I am not a puker. I know people who are, for whom this is sort of effortless, but I am not at all in that club. But there was no way I was going to survive the night with my ill-considered meal in my belly.

Around 1:00 am, as I lay with the heating pad on my stomach to soothe the turmoil of puking for hours, I realized that because my life is magical and filled with splendid coincidences, my shoulder was very angry about the festivities. Who the fuck hurts their shoulder puking? Me, that’s who. People with EDS, that’s who. So then there was ice for the shoulder and heating pad for the gut and restless sleep wherein I dreamed I was being bitten multiple times by mosquitoes (Oh, Psyche, you borrower of trouble).

The world in all it’s internal and external splendor meets in the gut, with all its alchemical glory. It does not, however, result in gold.

Hanging Out With My Pals Anxiety and Panic

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I woke at 2:30 am, broke out in a sweat, and started panicking. It’s been an hour and half, and the panic party is still going strong, despite listening to some bilateral stimulation, repeating the word “okay” over and over again in my head, and silently reciting the alphabet over and over. Sometimes, those things distract me, but not this morning. Instead I am reviewing, over and over again, the fact that I got a little too drunk at dinner and may have slurred some words and been sloppy.

You would think I faced the electric chair, honestly, instead of maybe having had a little too much booze. Except, I really didn’t have any more than I normally have (less, actually) so what the hell happened? We had two margaritas in the late afternoon, something that is a bit of a weekend tradition. Then we met friends for dinner and split a bottle of wine between the two of us. Saving discussion of my tolerance and general habits, that’s not the usual level of consumption. Of course, alcohol is a favorite switch with which to whip myself in the morning, any morning, not just mornings that insist on starting at 2:30 am. I feel a little like I did the time I got all the mosquito bites and ended up slurring and spinning after three glasses of wine, and we *were* outside and the mosquitoes *were* bad, but I coated myself in Off, and I’m not itching much.

But all of that is just looping around and around in my head and nothing is stopping it. “You’ve made an ass of yourself” my brain insists, “You don’t remember the rest of the evening very clearly, you are a stupid, embarrassing person.” No, I tell my brain, no, this was not a cardinal sin, even if I did slur or stumble or not remember going to bed and vaguely recalling maybe taking a shower to rinse off the chemical warfare. But my thoughts loop on and on. My brain also wants me to know that now that I am up, and have been for awhile, that the rest of the weekend is ruined and I have foolishly wasted the chance to rest.

“Why did you go out at all?” my brain queries, “You were exhausted already.” Oh, I thought, that is true. I *was* completely exhausted. I have been in tech all week, starting with last Sunday night. On Sunday, Monday, Tuesday, Thursday and Friday I was watching the show. I wasn’t home before 9:30 pm, and I wasn’t asleep before 11:00 pm, and the one night I had off (Wednesday) I spent part of the night with my good friend and associate, Gnawing Stomach. The alarm went off every morning except yesterday at 5:45 am and I was up by 6:00am. But instead of thinking, in a forgiving of myself sort of way that maybe I simply pushed myself too far, I’m beating myself for my foolishness. What if I embarrassed myself? What kind of a jerk am I to meet up with someone for dinner and drink too much? That never happens to me.

Which would be a good reason to not freak out, right? I am not the person you don’t want to go out with because I’ll get all sloppy drunk and become slurred and overly sincere, so surely I have a free pass or two that are labelled “You Too Are Human.” My brain does not accept free passes, apparently. I am firmly, specifically, not allowed. I mean, what if I was a cute little drunk last night and did no harm? Could I let myself off the hook then? What if my immune system did flare and process things weirdly and so I lost some control? Why is it wrong to have an excuse?

In my whirling thoughts sort of way, I am obsessed with reconstructing the massacre. I did not have a good day pain-wise. My hands, thumbs, back, shoulder and hip were displeased with me. I did what I could to push it aside, because I had things I wanted to do. Even as I was happy to finally have a “day off”, I spent the better part of the day rendering for the show I’m designing this semester–which means I didn’t take the day off after all. Not that I hate spending a day drawing, but it was purely work-related, not something I was doing for myself. I didn’t finish the next page in the coloring book, I rendered a character’s costumes in full color and two views.

And here I sit, at nearly 4:30 am, nervous and wired and guilty. I have noted that I texted my friend and apologized for being drunk, and she said she likes me in any state including intoxicated. But I don’t feel better, oh no, that is expressly not allowed. Why does my brain sabotage me in this way? I don’t know. I’m also obsessing about the things I have to do today; like visiting my friend with brain damage and stopping by my mother’s house to look at tile samples. I could let both of those things go, but I won’t because I don’t feel I have a valid excuse. Then there’s the grocery store, meal planning, laundry….and then it’ll be back to work, tired and worn out instead of rested.

It seems that coping with this chronic, permanent, degenerative condition is constantly forcing me to re-evaluate my life and accept limitations. I don’t like it, I’m not happy, but clearly I’m doing something wrong or I’d be sleeping right now instead of splashing in a puddle of anxiety. At least, that’s what I imagine I’d be doing.

Paradoxical Response

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Someone got to leave work and go straight to the cardiologist for an EKG this morning.

The weekend was horrible. I continued having nausea, and started to feel more and more spun up–like I was vibrating really fast and might fly into pieces. My brain was a runaway train loop of paranoia and anxiety. I started wondering, “How come instead of tired (which is typical of beta blockers), I am feeling revved up?” I knew that I was overreacting to things in the extreme. The interface for my workplace went down, and when I tried to log on it flashed that “YOU ARE FORBIDDEN” and I was 100% convinced that I’d been fired. That’s how my weekend went.

I called the Cardiologist’s office promptly at 8:00 am and they put me through to a medical assistant

YES THAT IS A TRUE THING THAT HAPPENED, SOMEONE IN MEDICAL CARE WAS RESPONSIVE. UNICORNS ARE REAL, TOO.

who said that she would get back to me as soon as the doctor came in. At 9:00 they called asked me to come in at 10:00 am.

YES THAT SHIT ACTUALLY HAPPENED, TOO, THEY WANTED TO SEE ME RIGHT THEN TO DETERMINE WHAT WAS WRONG.

I arrived with a blood pressure of 144/110, shaking like a vibrator with new batteries and convinced, utterly convinced, that the doctor would come in and fire me. And that I’d had a heart attack over the weekend. And that they were going to put me in the hospital. And that I would die. My pulse was a casual 115.

The doctor came in and asked for the run-down and I described it all to her, so jittery it was hard to sit still, and she said, “I’ve never had that happen before. I’ve never had anyone have a response to taking this medication like that.” I said I was sorry. She said, “You don’t have to apologize, why would you apologize?”

YES SHE DID SAY THAT, IF I HADN’T BEEN DYING ALREADY I WOULD HAVE DIED MORE.

I said that I was worried that I was too difficult. She said that she didn’t mind that I’m difficult, and she wants me to feel better.

YES. CAN I GET AN AMEN?

She said, “You are having a paradoxical response, where the medication is acting the opposite on you from what it’s intended.” I told her I had a very similar response to Cymbalta last year, two times. She said it would take a week for it to clear my system, and since I had already tapered it for two days to just stop altogether. She decided that we would try Propanolol again, and see if it worked at a higher dose. She felt that my insomnia and such with it was my condition breaking through the drug, not the opposite, and that since I did not feel at all paranoid/crazy/jittery on it that we should give it another chance. I agreed.

She asked me if I had a nice long weekend. I said no, no I didn’t, I’ve felt like this all weekend. She said, “I’m really sorry about that. Stay in touch and come back in if you need to.”

YES. I CAN’T BELIEVE IT EITHER.

Like An Old Friend….That I Really Hated and Hoped Was Gone Forever

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Gnawing stomach has returned. Like a pesky alcoholic neighbor with poor boundaries, Gnawing Stomach (GS) always arrives in the wee hours, between 1:00 am and 3:00 am. GS arrived this morning around 1:30 am, and finally at 4:00 am I got up, got out my script for Frankenstein and read it since laying in bed listening to the gurgling roar of peristalsis as my gut processed itself was not going to do me any good. GS was in good company last night, since Hip Pain, Back Pain, Ankle Pain, Wrist Pain and Shoulder Pain were already partying down when she arrived.

GS is like a small rat is nibbling relentlessly at the center of my stomach. Sometimes it is drowned by cold water, but more often not. Antacids do not seem to help, but someone took two extra-strength Zantac at 2:00 am just in case. It’s kind of like a switch has been flipped telling my stomach that it needs to begin the waves of peristalsis that are the normal contractions of the gut to move food through–but there’s no food in there. Said contractions are contagious, and pretty soon my intestines are singing opera and stomping their feet to the infectious beat, beat, beat.

Now, we got a little intoxicated yesterday and ate a very salty dinner, so that could be the culprit except that GS actually arrived the night before, with little fanfare and what seemed a much smaller rat whose chewing I was able to mostly ignore and return to sleep after an hour or two. That night I actually had less alcohol than normal and had not had as much salty food–although, to be a good detective I note that prosciutto was involved both times. Not that my body normally rejects prosciutto. [Let me pause here to say that I spelled prosciutto correctly without looking it up, HIGH FIVE BITCHES]

The thing is, about 3 months ago, I discovered that Chia seeds are the key to having a colon that functions like a normal human colon instead of a rabid, unpredictable camel. Despite all the other myriad blows I’ve suffered this year in terms of health, every morning when things (you know what I mean) happen, I am careful to send a silent “THANK YOU” to the universe so that my body knows I am really, really proud of it and would like to take it out for ice cream for being so good. I’ve considered getting a gold star tattooed on my ass, seriously, I really value normal bowel function.

That said, I now face a long day with a rumbling stomach and shaky exhausted feelings. I’ve invited Immodium to spend the day with me and work some anti-spasmodic magic so that I do not have to abandon students in the basement while I dash to a bathroom. Immodium and I used to be really, really tight; like, we talked on the phone nearly everyday and went everywhere together. Immodium’s a good enough friend that she was happy for me when I moved on, so I don’t think she’s behind the visit from GS, however….one never knows what a spurned lover might do.

All I know is that I need to figure out what sort of exterminator is needed to have GS ejected from the game–and preferably in the form of a lifetime ban.

I Think I’m Maybe 86 Rather Than 46

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Also: 46? Geez, I was getting along just fine with 45 although it was an extended period of adjustment. Let’s slow the roll here, aging.

Ongoing Medical horse-shittery:

The PCP is sending lots of info to the insurance and they are not responding except, I think, that they called me at work yesterday. What’s problematic about that is I work in a very fancy schmancy concrete building and cell phone calls mean I have to shout into the phone “JUST A MINUTE I HAVE TO WALK OUTSIDE” and then run outside to find they have hung up. Also I have a new phone and my voicemail isn’t set up. And it may never be so, that’s one of those chores I loathe.

In the meantime, the PCP and I agreed that he would call the local rheumy and smooth things over so that I could see him as a fall back for when the insurance refuses to let me see the one in Albuquerque. Except, the local rheumy regrets that he cannot help me, so he declined the pleasure of a little catching up. Instead, he and the PCP, after having a mutually supportive hand-wringing session about how hard it is to treat me, decided I should see a Physiatrist. WTF is a Physiatrist, you ask? So did I.

A Physiatrist is sort of the MD who offers everything short of orthopedic surgery. It appears that their understanding of EDS and practices vary wildly, so there’s no telling if this guy can help or not. My PCP called him and they agreed that “EDS cases are difficult” and that the Physiatrist would like to help me with my “misconceptions” about steroid injections. Um. I am well-informed about steroid injections for EDS patients, so maybe I can help him with *his* miconceptions? Except: I don’t really have time to pay you AND educate you about my care. Also, there’s something like a 3 month waiting list to see him. OH, and, he works with the tiny pocket India man that I have already fired as a physical therapist. So, yeah.

At the same time I have ordered the Kevin Muldowney book. The problem being that it is intended for the Physical Therapist, not the patient, and it has to be a PT who is a manual adjustment-focused therapist, not an exercise-focused therapist. The tiny pocket India man is an exercise sort and utterly rigid about his program from the get-go. I mean, he does x, y, z, and isn’t even interested in whether or not you are getting better.

Back-To-Work and Collision of Life Update:

I allude a lot to a problem person in my life, and I’m going to allude again and say this: Walking into my office the first day back at work to find manipulative voicemail messages on my office phone from someone whose last telephone message threatened me should I ever contact them again (even though there had been zero contact from me in over a year) really sucked. I’m not sure why this person didn’t get the message when they spent 15 minutes ringing my doorbell and hammering on the door earlier this summer and I a) didn’t answer the door and b) called the police (who just missed this person, but rumor has it that she knows that’s what I did) but, GO AWAY, PERSON. I am pretty sure I don’t have enough for an order of protection, but, still. I would like one.

Work is hard, already, and my body is not the wondrous instrument I would like. I cannot carry anything on either shoulder, and pushing that weight to my elbows is going to backfire at any moment. My back and hips hurt all the time. When I get home from work, the muscles in my shoulders/upper back seem to sort of crawl up toward my neck and clutch me in a very painful way. I’m chilling on ice (ha ha) and then sleeping on a heating pad to try to settle all that down. The results are minimal.

The emotional soup at work is one of uncertainty, resistance and naked agendas as we have a new department chair who is ready to make lots of changes. Our former interim chair was so bad that we devolved into tiny clusters of people vomiting anger and vitriol in corners, attacking each other and gossiping like a bunch of hens on meth. Uncertainty does not bring out the best in most people, I have found. My goal is to navigate this shit soup like a graceful sailing vessel that moves easily through, and above, the fray.

In Summation:

I have a condition that few people are even willing to understand or support.

Someone needs to stop with their obsessive stalking.

I just need to survive until Thanksgiving, when I’ll have a week off.

Sorry, Reality, This Isn’t a Good Time

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This summer is the gift that keeps on giving. I had my teeth cleaned yesterday; an activity I despise anyway, but which has become harder due to EDS. My hygienist murmured that she didn’t remember what we did last time but if we needed breaks we could take them. She started to torture me and I politely raised a finger. She stopped.”You gave me bite blocks last time.” Oh, she says, she must not have written that down. Except then she looked at my chart and she *had* written it down. My tolerance for any issues right now is well below zero. In the time she was saying she didn’t remember, she could’ve been looking at my chart. I am a font of magical ideas, man.

My dentist came in at the end and asked about my jaw, which I reported is making a sort of scraping sound when I open it. He said this was the joint rubbing against the bone and if I developed a lot of pain or found I was losing function to make an appointment. Then he said, “I’ve been researching Ehler’s Danlos and wow, that’s an interesting malady. Do you also have Sjogren’s? That’s pretty common in patients with what you have.” I said I had wondered, as for about the last six months or more, I wake up in the middle of the night because my mouth is so dry I can’t swallow. “Yeah,” he said, “You probably do. We’ll start you on a high flouride toothpaste that you’ll brush with at night and then don’t rinse your mouth.”

So naturally I trot home and take a hard look at Sjogren’s Syndrome and surprise! I’m pretty sure I can add it to my collection of EDS co-morbidities. I also looked up how to pronounce it, since the word itself offers few clues. It’s “Shoe-grens”. You’re welcome. There is a similar issue with Ehler’s Danlos, is it Aylers, Eh-lers or Eee-lers? I say “Eh” lers, which is probably wrong but I’ve heard every variation.

ANYWAY, Sjogren’s is an auto immune disorder wherein a person’s immune system has a meeting of the war council and pledges to attack the moisture producing glands related to mucousal membranes. So, dry mouth, dry eyes, dry nose, dry lady bits (giving new meaning to the treasured insult, “dried up old cunt.”). My mouth is terribly dry, which I had been thinking was pretty odd, given that I come from (and had been a member of) a pretty juicy family. My nose is also dry, and often I get cracks in there that make even the slightest magical gesture very painful. My eye doctor mentioned that my eyes were mild-moderately dry.

Sjogren’s is typically diagnosed and managed by a rheumatologist. You know, like the one I can’t see in Albuquerque. My options at this point are as follows:

  1. Do absolutely not a goddamned thing about it.
  2. Keep the appointment in Albuquerque and pay out of pocket.
  3. Text my PCP and ask him to call my sort-of former Rheumatologist here and see if he can smooth things over so I can crawl back to that guy and get his opinion on diagnosing the Sjogren’s (for which there is not a definitive test, rather, a collection of evidence that points in a direction, but only sort of).

I keep telling the Universe that I have more than I can handle on my plate, yet the universe seems to be an old cafeteria lady who is hard of hearing and keeps giving me another scoop of lukewarm mystery meat with gravy.

Dizzying

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I’ve had several break-throughs this past week or so, and it’s almost like I fell into a rabbit hole and came out a different version of myself.

  1. I realized that in response to the structure of my family, I chose, at the age of six, to be the person who would be perfect, and who would make everything okay for everyone. Did you make a decision that hurt my feelings? I won’t tell you, it would make you uncomfortable, it’s okay. Do you have inadequate social skills and monopolize conversations? It’s okay, I will suffer through rather than call you on it. There are a million examples, and I’m in the process of setting myself free. It’s scary but also liberating when say, I’m on the phone with my MIL and she is detailing the various possible locations of the dining table in RVs and I think, “It is not my problem that you are inept at conversation.” OMG IT’S NOT MY PROBLEM. I interrupt the moment she takes a breath, tell her the things that I think are news on our end, tell her that we are thinking of her and that breakfast is ready so I must go. I’m not, ever again, sitting down to a cold meal because someone wanted to tell me how the weather has been everyday this month.
  2. I read this post and saw myself therein. I need to pace myself on a long term basis. This means that my activity level should not spike and bottom out, but remain more constant. I can’t push myself to the edge anymore. At least as much as it is possible–working in theater this over-activity business is kind of “how we do things ’round here.” This is difficult, because it means letting go of the “maybe that was the last flare up” mindset. This is a permanent condition. So easy to write, yet so very difficult to accept.

A result of examining both my people-pleasing at the expense of my own happiness and my tendency to over-activity–both of which are things that hurt rather than help–I did something really out of character. I had a thought, “It would be so cool if I could afford to have an assistant in my studio, even a few hours a week, to do some of the stuff I can’t do, but also stuff I don’t want to do because it takes away from the number of spoons I have to do the things only I can do.” This was followed by the realization that having done away with massage, I am saving nearly $400 a month. I CAN afford to hire an assistant, at $10 an hour, for four or five hours a week. So, I did.

I’m panicking a little now, because this is tremendously new territory for me. My assistant starts Friday, and my goal yesterday was to start a list of what she can do for me. I choked, man. I sat in my messy, chaotic studio and couldn’t figure out what to have her do–because, as I told her when I interviewed her, I am not entirely sure what this will look like. It’s hard to give up control of my creative space in any way, and hard to direct an able-bodied person to do things for me. She completely understood that, and now I am trying to fully understand that, and figure out a list of things for Friday. It’s much harder than it seems, because there’s a lot going on underneath the surface in terms of my own acceptance of my condition and limitations.

I am sure I will make it through, I am sure I am doing the right thing for myself and I know it’s okay to feel like I’m embarking on a trip with no itinerary. We’ll get to the destination we need to get to–we won’t be left floating about the ocean with no sail. Fingers crossed.

Trending Downward

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I had a shaky day post-meltdown, which is to be expected. Great energy was expended, problems were not solved, resultant sense of fragility must be nursed through the day. I got some drawing done, started on the process of tapering off the Propanolol, and even allowed myself to sit on the couch and look at pretty books (this one and this one) and worked a bit on a remake of a dress for an upcoming local production of Passion. I reached out to a couple of friends about where I was at–this is really hard for me because of my self-imposed requirement that I be perfect and never, ever voice complaints. One of them actually said that, “I forget that you have this issue because you never complain.” That is a good summation of two sides of the coin that I have set up. I have some really big and serious going on, I never allow myself to complain. I told her that I live in fear of being one of those people who drags everyone down with their constant litany of sadnesses and infirmities.

This same friend’s husband has a sister who is a Rheumatologist in another city. I called in May and was given the next available new patient appointment, which is on September 4. I’ve held out some hope that this person will be a lifeline for me, that she might be willing to help me manage my care and might be able to refer me to a better cadre of specialists in her area. I will drive for three hours one way to get good care, that’s how inadequate the care here has become. However, when I made the appointment, they mentioned that she is not in my insurance network, BUT that the insurance would often pay since I was traveling to see her.

I am not naive. Along with the hope I’ve clung to, I’ve known that my insurance paying because she was out of town was a fairy tale. Yesterday I sat down to sort that out. That is the same as saying I sat down to go on ahead and break my own heart. The insurance confirmed that she is not in network. They offered the possibility that I could get a “PPO Waiver” if it could be demonstrated that she was the only person who could treat me, and no other in-network doctor could do so. So I called the doctor’s office back. They confirmed that they do treat EDS patients, but I would have to talk to billing about a waiver. Billing politely told me that an out of network visit would be $95 at the door, and a resultant $300-500 bill later. They wanted me to have my insurance contact THEM about the waiver–a concept that the lady I talked to had never heard of.

So I called the pre-authorization number my insurance gave me. I explained the situation. They said that they would start a case, and investigate if there really wasn’t anyone in network who could provide care (at this point, honestly, I considered hanging up and building a blanket nest and not coming out for three days–I know tilting at windmills when I see it). They also wanted me to then provide this phone number and fax number to the doctor so she could send clinical details to them. Um, wait, I said, I’ve never seen this doctor. She can’t send clinical details to you.

With a clanging of funeral bells, they said then my PCP would have to do that. I could hear Monty Python’s “Bring Outcher Dead” in my head, and there was no reason to argue the point as I’d certainly be dead soon enough, might as well lay down on the cart. I called my PCP’s office. I had the (not) pleasure of speaking not to Beehive, the receptionist, but Incompetent L., my PCP’s assistant. I explained the situation to her. She said, “Well, he’s only here half a day on Fridays.” She tells me this every time I call on a Friday, like it’s a national holiday and I have violated protocol. “Also,” she went on, “He’s on vacation next week.” Okay, I said, well, my appointment is on September 04, and I’ll need time to cancel it if this doesn’t work.

First, she doesn’t even understand what I am asking, and even more will be lost in translation when she gives the message to him. Second, he has referred me to this doctor because I asked him to, not because he found someone he thought would help. Third, he’s a fucking chiropractor with a nurse practitioner’s license, and the only weight that will give his opinion is that clearly HE is not the right person to treat me, but there will be long lists of others that my insurance will say can do so. What Rheumatologist won’t say yes when asked if they want to get paid to see me? And how detrimental are most Rheumatologists to people with EDS? VERY. Very detrimental. It was the personal connection to this one that might have been a game-changer, but now I will never know.

I don’t know how many final straws there are, or how many death blows one must be dealt before giving in, lying down and accepting defeat. I’m close. I long to fire my PCP but I can’t because then there would be nothing. Yet, he is doing me so little good at this point, he has made big mistakes with my care, and I can tell he is tired of not being able to fix me. It is warped that I care at all about his ego and the challenges of caring for a patient like me because guess what? It’s worse to be the patient in this scenario than the care provider.

I found I had not run out of tears, not by a long shot. There are plenty left in the tank.

Maybe I’m Allergic to July

Standard

If my husband were writing this, he’d likely say that my sudden descent into fury and then hysterical, ugly sobbing for over an hour last night came right out of the blue. Except that careful examination of events leading up to that suggest that there were many warning signs that might have been noted in order to batten down the hatches in time. I am past the point in my life where my behavior is something that happens in a vacuum and is related to the inscrutable whims of having ovaries.

Most of my life my emotional tactics have been polarized by being in the shadow of a person whose voice needed to the the loudest in the room, whose needs had to be greater than anyone else. The tacit agreement that this person deserved all the space/love/attention was that which forced me into a corner with my own emotions. I’m tightly lidded, and sometimes  even I am not reading my inner barometric pressure very effectively. It’s my job to be fine. Always. It’s my job to be rational. Always. I am never sure what the right balance is, so I tend to fail to release some steam in time to avoid a complete breakdown. Sometimes I’m not in touch with my feelings enough to know that I need to bleed a little air from the lines before something blows.

Second only to having a rare, incurable condition that includes chronic pain and a host of other oddities is the isolation and loneliness that come with it. It’s not as if someone comes across to find me bleeding from the head or with a visibly broken bone that demands action. People really only know if I am in pain if I tell them. It’s not my style to report my pain to people constantly, and I don’t want to become the sort of drag that can only talk about themselves more and more loudly to gain attention. I compensate well enough to fool even myself sometimes.

From Sunday night until Tuesday night I woke at about 1:30 or 2:00 am, with significant pain but also a racing heart and scattered, unsettled mind. I lay awake until 4:00 am each time, trying not to freak out. Tuesday night I planned for it. I drank less in case that was the issue. I took a bath to relax (instead it put my heart rate at 119, but I tried) I went to bed early. I set my mind up with things to think about should I wake up, and reminders about relaxation. I woke up at 1:30 am feeling both angry and unable to focus or settle my brain. My shoulder was terribly painful so I iced it, and whiled away the anxious hours until I fell briefly back to sleep at 4:00 am.

Once I got up, I Dr Google’d the beta blocker I’m on–Propanolol. Surprise, it can cause wakefulness and disturbed sleep particularly in the wee hours. Believing my PCP to be away on vacation, I finally decided to text him anyway around 10:00 am. I said to my husband at lunch time that I didn’t really think I could be asked to deal with all of this (pain, sleeplessness, lack of professional medical support). I caught the edge of tears in my voice and stuffed that back away. Part of me might have hoped that my spouse would immediately take me in his arms and reassure me, but that part of me is an immature girl who wants her mind read. Or, what it really is–I need someone else to bridge the gap between the growing emotional tension and the place where I can let some of it out constructively. When they don’t hear that unspoken request, I feel abandoned and angry.

I waited all day to hear from my PCP. I finally did, at a little after 5:00 pm. He’s not away on vacation after all (the only excuse I would find acceptable for not getting back to me). He told me to taper the Propanolol. I had to query then as to how much? How long? A series of texts trying to elicit information from him. And then at the end of that conversation he texted, “I have another EDS patient who is doing well on Cymbalta. Have we tried that?”

If you wish to go back through my archives you can see that last July/August, we tried Cymbalta not once, but twice, and my reaction to it skirted the edge of “needs to be hospitalized”. On the surface, maybe, this is just a boo-boo on his part. To me, it felt like a ton of bricks. First, it would help if my PCP remembered my history, especially the parts that required constant texting for two or more days to make sure I got through the reaction. Second, I felt shamed; he has another EDS patient who is apparently easier to work with and gives him the satisfaction of helping. Third, I was alarmed that he thinks he’s good enough at this to manage another EDSer, because I generally feel like he would give anything to pass me on to someone more competent.

I texted back, “Twice. Serotonin reaction both times.” I never heard back. I actually went back to my archives, too, to make sure that my recollection was correct–once again allowing a medical professional to cause me to question myself and what I know. My husband even said, “That’s what he tried on you last year that was so bad?” At that point I was already imploding and missed that he was with me on this and might have my back. I was aware of feeling angry and tired and pain. I did not take a full inventory to see that my internal pressure was approaching the red line.

I’m giving up massage, the one thing that I could hang my hat on as working and helpful. My shrink is retiring in September. My pain has ratcheted up significantly. I’m again having a drug reaction that crosses yet another item off the list and leaves a significant problem unsolved. I haven’t slept well in awhile. I don’t have adequate medical care or support. I’m going back to work soon, when I will not have the ability to sit around all morning because I stayed up crying half the night. I have lost some of the support I used to get from my mother, because a mentally ill family member is too close for her to not to lose her focus and boundaries. There are NO solutions for any of my most pressing problems.

So the fact that I then went on to very much overreact to a perceived slight on the part of my spouse and go on a rampage of shouting that ended with him leaving the room while I sobbed and ugly cried is somehow not so surprising as it seemed last night. I can see that I made myself unlovable even as I demanded it from him, and was somehow thorny while wanting him to be willing to hold that thorniness close to him and be tender with it. I can see that there is no way I can be neat and surgical about my emotional state and subsequent falling apart. I completely lost my balance last night, and I feel pretty wobbly yet today. I’m not sorry for the sobbing because I needed to release it. I’m sorry I wasn’t able to let any of it out before it reached the atomic level. I don’t know how to have a well-timed, scheduled breakdown, nor should I be so constrained, but for my own sake I need to stay a little more in touch with my internal state.

Which is difficult when so many things are just not working for me right now. I’m probably not done crying.