Category Archives: Worry Worry Worry

Of Various and Sundry Tragedies

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Artful Blasphemy has been eating up a lot of my time, but so have stress, sorrow and anxiety. 

EDS News:

I saw the Physiatrist last week, and he felt that my shoulder is impinged. We discussed, pretty thoroughly, my concerns about steroid injections, and he felt that it would only take one shot to fix it. So I agreed. So far, it is sore, and I’ve postponed trying to sleep on that side because I’m not ready to deal with the possibility of this treatment failing. He also wanted to try Effexor, which he said some people who do badly on Cymbalta can tolerate, and some can’t. I started it Thursday night, and I feel a little clenchy, and a little weird, and I can’t decide if it’s the drug or if I’m just paranoid due to so many paradoxical responses. Being stuck in mental debate is always fun. 

That afternoon my back spasmed horribly, and I had to go home and ice my shoulder while soaking my back in a hot bath and crying over the perfect storm of awful that has struck my life this past week.  

Work: 

Since my new department chair gave my co-worker more power, she has become impossible to work with–and this while she thinks things are going great (why wouldn’t she?). She countermands me, invalidates me and yet needs me or else she can’t do her own job. She barges into fittings, snatching them from my hands and announcing to students, “Everyone does this WRONG, nobody understands this.” Were I to confront her, she would suddenly “not remember” doing that. I’ve been down this road before with her. I’ve reached the point where I hate her, I am miserable at work, and I fantasize that I will, at some point, simply put down my scissors and walk away, never to return. 

I have to somehow deal with all of that while I am in pain, icing my shoulder, nursing my back, and appearing to be graceful and resilient. I don’t feel like I am either, but maybe I was meant for the stage after all. 

Life: 

My mother has dated a man for two and half years, whom I liked. She has been so very, very happy–they travel, they shop, they have fun together. Until last week, when apparently she found out that he had hidden something from her that was an absolute deal-breaker. I have been utterly heartbroken for her; I cannot fathom the pain she is in and would do anything for her to not have it. I was so happy that she had love and joy in her life, and I feel really bitterly about this man turning out to be someone he said he wasn’t. My poor, poor mom, you know? 

More Life: 

Many of you with chronic pain know that sometimes a pet is the very best pain medication there is. We found out this week that my soul-mate dog has a cancerous tumor in her leg that is inoperable because of where it is. I am completely unprepared to lose this dog. We have the option of amputating the leg and hoping it hasn’t spread, but she has arthritis in her back and slight dysplasia so we are not sure if she can handle only one hind leg. I have no intention of making her suffer because I can’t let go, but I also feel unable to cope with losing her. It’s a really hard decision, and instead of making it I’ve just broken all the rules and let her sleep in our bed each night. I am too emotionally reliant on her, yet I must make a really painful decision on her behalf that she won’t understand. 

So it’s fitting that Artful Blasphemy just started the first edition of “I Hate Sundays” because it’s Sunday, it’s not even 9:00 am, and I am just suffused with dread about going back to work tomorrow. Perfect. 

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.

Getting an A+

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If aging is something one can study for, I am going to totally ace it when I get to being elderly. I am already getting to practice so many aspects of becoming frail, I may not even notice a difference when I’m finally, formally, an old lady. (I promise, though, solemnly, that I will not wear a purple hat–that is some silly bullshit, friends).

It’s not uncommon, for example, to have to regularly monitor one’s blood pressure and heart rate in one’s later years, but that won’t be any kind of stumbling block for me, as I do that at least once a day already. I am acutely aware of my heart’s various flutterings and hiccups, and take a month’s history of it to my cardiologist at each visit.

Likewise, the need to document one’s medical issues is an elderly treat I have already gotten to partake of–I will soon be one of those patients with a clear Ziploc full of pill bottles and scribbled notes and a notebook full of diagnostic letters and test results. Remember the halcyon days of youth when the only medication you were on was maybe birth control or allergy meds? No more, now there are beta blockers and handfuls of supplements. I have arrived, old age, I am already amongst your people.

I remember that my Grama would often bemoan not being able to eat whatever she wanted anymore, as many things seemed to upset her system. Given that last night and two nights ago I had big meals from carry-out restaurants and each night awoke at 2:00 am with gnawing stomach that lasted until 4:30/5:30 am, it seems I will not have to face that hurdle in my seventies. It will be old hat to say, “Oh, I need to watch my portions and be careful not to overeat because it makes my stomach hurt at night, dearie–you can have the rest of my smoked rib plate/reuben sandwich for me”. And, “I need to eat dinner earlier rather than later, or I won’t be able to sleep.” I should just start working Jeopardy into my life now; I can watch it at 4:00 while I eat a small, bland dinner.

Old people often feel stiff and achy in the morning–gone are the days of springing out of bed and leaping into whatever tasks or adventures were ahead. Each morning as I stagger to the shower with my hand on my lower back, wincing as my ankles and wrists and shoulders speak up with complaints of their own, I’m grateful that I will not have to go through the disappointment of feeling this way when I am old. I will not wake up one morning to find my youthful spring-of-step mysteriously compromised, I will feel the same way I have felt since I was a 46 year old babe with dewy skin and innocent expectations.

Older people spend a lot more time at the doctor’s office, too. Yesterday, waiting to be called for x-rays of my hands, neck and right shoulder, I overheard this conversation:

Sweet old couple waiting nearby, are approached by a receptionist:

Receptionist: Mrs Smith, have you visited Africa in the last 21 days?

Sweet old lady: What? What did you say?

Receptionist (louder, but not slower): HAVE YOU VISITED AFRICA IN THE LAST 21 DAYS?

SOL: WHERE? WHAT?

Receptionist: AFRICA!

SOL: Africa? (looks to husband) No…..I don’t think so. Why?

Receptionist (still not slowing down): It’s because of the EBOLA.

SOL: What?

Receptionist: I’m just checking “no”, thank you!

SOL: What’s your name?

Receptionist: Adawnna.

SOL: What?

Receptionist: Adawnna. (leaves)

SOL (to her husband): WHAT DID SHE WANT? WHY DID SHE CHECK SOMETHING OFF?

Husband (rising painfully slowly to his feet, goes up to receptionist’s desk, the same conversation is had, and he returns): -chuckles- They thought we might have gone to AFRICA.

SOL: Where?

Husband: AFRICA. WHERE YOU CATCH THE EBOLA.

SOL: She said I have the Ebola?

Husband: No, no, she said you haven’t been to AFRICA.

SOL: Well that’s true, who would go there? They have the Ebola.

Then they laughed and laughed.

See? I haven’t been to Africa either, so I’m in the club.

Old people also have trouble getting in and out of the car. I can no longer manage to control the swing of the truck door and get in at the same time, so I go wait in the driveway while my husband backs out, and then I get in. The reverse happens when we get home, and have to sort of let the momentum of the door haul me out in a controlled slithering operation. I have similar struggles with heavy doors, and hover around them waiting for someone to open them for me whenever possible. I also stick my foot out so that if someone crashes through it maybe they won’t break my wrist and knock me down–us old folks know there’s a broken hip lurking around every corner.

On the bright side, I look really good for being 80–I mean, I look half that age, really. I’ll be able to get lots of dates at the retirement home, I’m sure.

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.

Of Beta Blockers, Side Effects and Unreturned Calls

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The cardiologist kind of wowed me with this, “Of course I know about EDS, a cardiologist has to.” Also, where she said, “This is not in your head, you have a collagen based disorder and this is how your disorder affects your body.” She first said I needed to see an Electrophysiologist. Then she said that well, we’d try a beta blocker first. She asked me to stay on it for one week, even if I thought it made me really tired–which is the expected result when adjusting to beta blockers. The other weird thing was that she noted my blood pressure was pretty high, and even as I showed her the last month’s worth of daily readings, it was never particularly low–something it has always been in the past. She checked my ankles for swelling and found none.

The next day I hid from work and stayed home, ostensibly to rest. Instead the busy, busy monkey that is my brain started wondering, was she checking for heart failure? Oh, and, OH OH OH (my brain gets really excited about freaking me out), what about that ten pounds you’ve gained so mysteriously in your belly? You’ve never put weight on your belly. Let’s ask Dr Google if mysterious belly weight gain is a sign of heart failure! So we did……and it is……and my brain celebrated this exciting possibility all damn day long. “Remember how you’ve felt really tired? Yeah, yeah, fatigue is a symptom.So’s high blood pressure!” All day long.

The cardiologist had put me on Metoprolol ER, the lowest possible dose, which is 25 milligrams once a day, taken in the morning. Day one, I noticed that I was nauseated pretty much all day, and found it curious that my urine seemed dark (urine, I said, did you have a multivitamin when I wasn’t looking?). The next day I got on the scale and was five pounds lighter than I had been the day before (my brain scribbles this down, “see? it’s water weight, you’re in heart failure.”). I was, also, completely uninterested in food and noticed that the wave of nausea seemed kind of regular, like they were happening each time the drug released throughout the day.  Day three I was still the same weight as day two, meaning I apparently didn’t imagine that new number. Also, I was nauseated all day long, but I could find windows where it ebbed after a release.

Now, if you’re saying to yourself that obviously I should have called the doctor rather than googling side effects and such, allow me to politely suggest you shut the front door, because I did. I called yesterday around 10:30 am. I reported that I had a question about a medication and that I was experiencing nausea. You know as well as I do there’s no reason to give the receptionist a list of things, they are there to send the message. She said that the doctor was in surgery all day but the message would go to the medical assistants. (Then I got a shitty email from work and my blood pressure went up to 145/110, which I think if I had a fancier monitor it might have called 911 for me. But I don’t so I closed the work email and avoided it the rest of the day and the numbers went back to the new normal of not low).

Of course no one called me back, right?

Right.

We went out to dinner and I was hella nauseated all the way there, then it cleared for a second and I ate, but about a third less than normal. On the way home I started to have intense stomach and chest pain. This lasted about an hour, then resolved around the time I was thinking okay, if you have to ask yourself if you are willing to sit in the ER with all the people who think they’re at the daycare for their neglected children, then you do not need to go to the ER. Got it? Oh look, my stomach stopped hurting as much, cool.

I suspect there is zero chance I will hear from the doctor’s office before Tuesday, and one cannot just go off beta blockers. You can have a heart attack if you don’t taper down very slowly, so I’d kind of like some direction from the expert before I do anything differently. But, how good does another few days of nausea sound? Not so good. No me gusta, honestly.

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.

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.

Maybe I’m Allergic to July

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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.

Jumbled Thoughts and a Jeep

Standard

Endless analysis isn’t healthy, yet my brain loops happily long after it’s productive.

My spouse wants to buy a WWII-era Willys Jeep. I am angry about the Jeep. I could spend hours trying to figure out why. But I would still be angry.

So, I’m angry. I feel like I’ve been set up to be the person who is no fun. I feel jealous. I feel left behind. I feel set aside, unnoticed, left out. I feel afraid.

Afraid of a Jeep? Yes, apparently I am. I have listened to things like “stiff suspension” and “bouncing around the goat trails” and “fun” and I know those first two mean that the last isn’t happening for me. It is something he will do without me; and not because I don’t want to (which is the position I am outwardly holding) but because I don’t think I can, which is the part where I feel like crying instead of feeling angry and hateful.

I feel left behind. The next thought that seems to follow that is that I feel that way about our upcoming visit to see his parents in Chicago (the Chicago suburbs, I add, hastily, having learned there is a VAST difference—learned because “my parents live in Chicago and have a pool” conjured an entirely different scene than “they live in a suburb in a smelly house with a crappy above ground pool full of goose shit.”). We stay with his brother, who has stairs. I am deeply worried about the stairs, and also feeling exposed and vulnerable and on my own–which is how those visits ALWAYS feel to me, and that was before I was so affected by EDS.

That’s it, really. I feel alone, and like I am being left behind, and like I am not worth the trouble. I cannot sit in one position on the couch for very long without something starting to hurt; I won’t do well being bounced around in a Jeep. It’s like when we talk about how much we think the child would like snowboarding and I wonder what would I be doing? Sitting alone in a hotel room?

Before my Grama died my mother and I took her to California for a niece’s wedding. We went out shopping and Grama said she would be perfectly happy sitting in her hotel room while we did that and I still feel like crying when I think about that and how much I don’t want to be left behind. I don’t want to miss out. I don’t want to be excluded, or cast as no fun, or the problem.

The Jeep makes me feel like I am. The stairs make me feel like I am. Right now, my spouse makes me feel alone. Not out of spite, but out of not being in my shoes.

They say that ultimately, we are all alone.Pity it makes us so uncomfortable.