Category Archives: Whining

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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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.

Where Have I Been? Nowhere, Just Here.

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Broken Ankle Update:

No invasive surgery required. Instead, they did a “closed reduction,” meaning they knocked the child out with general and manipulated the bones into place (note: you must be very strong to be an orthopedic surgeon) and put him in a long cast. The “long cast” goes above the knee so that he can’t move the tibia at all. It sucks in terms of mobility since he can’t bend his knee. That cast stays on for three weeks, then a short cast for four weeks, then a boot, then physical therapy.

Vacation Update:

See above. No vacation.

Art Update:

I have decided to pitch an adult coloring book to a publisher, so I’m working like crazy on that and forcing out all insecure thoughts. If I can’t get published that way, I will self-publish. I think I am onto something here, and it’s an exciting prospect.

Sewing Update:

Still sewing, but nothing too interesting right now. I need a good camera so I can actually take professional looking photos of my work instead of crappy photos on my phone or iPad.

EDS Update:

Christ on a cracker, it sucks.

1. Massage has stopped helping. I’ve been trying to avoid voicing this reality, since it means I no longer have anything for managing pain. That’s a really unpleasant place to find oneself. But, for $95 a week I should be feeling relief for at least a few days afterward, and I’m not. Sometimes I feel worse. I have to figure out how to man up and tell my therapist this, since I like her a lot and it’s not her fault but I do have to stop throwing money away.

2. About two weeks ago my left thumb chose to lose about 30% of my pinch and grasp ability. I can’t lift anything of weight (like a plate of dinner) with either hand if the weight is mostly to go to my thumb. I feel like I have silly paddle hands as I try to work around this, and it’s painful. I can’t have my CMC joints fused unless I am ready to quit my job and possibly lose the dexterity I need to sew and draw. Which is sort of the same as saying I have to give up oxygen. So I’m stuck.

3. My shoulders are worse again, and I cannot under any circumstances sleep on my right side. I wake up around 2:00 am every morning because I am in pain, and it can take up to two hours to get back to sleep. Sometimes I can be sitting at the table talking to someone and a third of my brain is occupied with how much it hurts to just deal with the weight of my shoulders hanging off my neck.

4. My back is verily fucked up and hurts all the time. I have two degenerated discs in the lower back (L4 and L5) and what I probably really need is to get a chiropractic adjustment. But, that is problematic for EDS, and so I have mostly given up on it at this point. My last stab at that was my PCP putting my upper rib back in place and it popped right the hell back out within hours, so that was a wash.

5. 80% of the time, or more, I can deal with my level of daily pain. Sometimes, though, it just seems like it is far more than a person should be asked to deal with, and I have a day or days of feeling really angry and frustrated and sad about being in pain every single damn day. Which is why it’s hard to give up massage. This weekend is one of those points where I’ve had it with my body and my discomfort and there’s going to be a pity party. Which is not a party I can even enjoy.

Overall Update:

Ugh, except for art, which is good.

It Was Bound To Happen

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I’ve been free of prescription meds (with the exception of my asthma inhaler) since last summer’s drug debacles. I’ve not been in physical therapy, I’ve not seen my former rheumatologist, I’ve not seen my PCP for anything EDS-related except to get a referral to a doc in another city (who can’t see me until September and who might not take my insurance, anyway). I’ve stuck with the Shrink and massage and wine.

My shoulder pain, by yesterday, had gotten to where I felt short of breath. Yesterday morning, as I sat at the table drinking my coffee and wasting my life online, everything went black. I had a second before my face would’ve hit the keyboard to take a really deep breath, and the mist gradually cleared. This has happened once or twice before, but usually with warning. My heart will suddenly flop, or whomp against my chest, and I know to take a really deep breath. It’s never been that it was suddenly lights out, no warning.

I checked my blood pressure and pulse and they were both high. I worried that I was having a heart attack, or that my lung had collapsed, etc. I called my mother to consult (I am the best unlicensed physician you ever met, but self-diagnosis requires a consult with the second-best unlicensed physician). She agreed that I needed to call my PCP. Also, she said, I shouldn’t drive myself to the appointment.

I called the office and the assistant gave me a 2:00 pm appointment. I texted my PCP. As an aside, let me note that I loathe my PCP’s office, which is crappy. I find his staff generally unprofessional, inefficient and sometimes stupid. He is in a practice with his father, so his mother is the office manager and my, that was a bad idea. There is even less than the standard of zero confidentiality that exists in this town. I stay with them only because my PCP is really smart and good at what he does, and because we are friends and I can text him.

I texted the details to him and he replied: two options, a) see (asshole cardiologist) or b) I’ll do an ekg in the office. I picked the EKG. My husband took the afternoon off to drive me to the appointment. The EKG was normal enough. The symptoms (including a migraine-esque headache) were all clearly of the autonomic/P.O.T.S. variety. We have already tried the benzodiazapines, the SSRIs with no success. That leaves beta blockers, so I now get to take Propanolol. He gave me a tiny dose–10 mg twice a day. I suppressed my standard objections–they’ll make me tired (he had predicted that and suggested this was least likely to drag me out), I don’t want to take medicine (then don’t go to the doctor), etc.

He felt my shoulder/neck pain was coincidental. The other reason I stay with him is that he’s a nurse practitioner and a chiropractor. He said that people don’t realize that we have ribs going all the way up the spine, and he felt that one or two of mine were out of place. He adjusted my neck and shifted the rib back in place. It may have been subluxed by massage, but who knows?

This morning I am worrying about taking a new drug and what it might do to the delicate balance that is my gut, and frustrated because my shoulder still hurts. I’m back on the medical merry-go-round, and while I know this past year was borrowed time, I’m unhappy about having to get back on that ride.

It’s Always Something

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When I started massage therapy last year, it was miraculous. All summer I had complained to any provider who would listen (or couldn’t help hearing me even if they weren’t really listening) about my shoulders. My rock hard, painful, clicking, popping, crunchy shoulders that felt like they wanted to tear themselves away from my neck altogether. After a couple of weeks of once-a-week, hour-long massage, I realized–my shoulders didn’t hurt anymore. I was converted, and made clear to all concerned (family, work, friends) that on Fridays at 11:00 am I have a massage, and nothing; not tech week, not socializing, not anything, was to get in the way of that.

About two or three months ago, my mother offered to pay the difference for ten 90-minute sessions. When I completed the tenth, I knew there was no going back, so now I have a weekly 90-minute massage that sets me back $95 per visit. But if it helps, then, it’s completely worth it. Right now, that’s the problem. Lately it doesn’t help, or if it does help its for a day or two, but doesn’t carry me through the week.

On Friday I went, as usual. My shoulders were lousy. She had trouble getting them relaxed enough to even work on them. It’s funny, too, that when my body is resisting it’s framed in terms of me not letting go enough. I wondered if maybe it’s not “me” per se, but that my body is so jacked up it can’t release itself (what? Not my fault? Not because I am just not good at this? Whatchu talkin’ ’bout, Willis?). We did a couple different things.

Friday night was opening night of Chicago, the celebratory presentation of our collaborative effort to make theatrical art. That meant that Saturday? Saturday was the beginning of my actual summer break. I got up yesterday with so much pain in my left shoulder/neck that I couldn’t look over that shoulder, I couldn’t not think about the pain, I could hardly interact with any success because the pain alarm system was just jangling away, louder than anything else. I was driving to take Ibuprofen, I took a warm shower, I laid on the heating pad, I iced it, I heated it, I took a hot bath with epsom salts. I sat outside under the misters and drank two hard ciders mid-afternoon, I took a short nap, I rubbed in that rip-off Blue Emu shit I bought (oh, we the chronic pain types, we can be parted from our money so many different ways).

I endeavored to distract myself all day. I tried as hard as I could to not berate myself or engage in internal whining about losing this First Day, I tried to deal with now, not, “What if now that I’m off I feel like shit for the WHOLE SUMMER?” etc. I would say I was 75-80% successful. I resisted the desire to tell my shoulder, “Fuck you, I’m going to sew/draw/work anyway!”

This morning? My left shoulder is much, much better–down to its normal 2-3 pain level. Ready for the kicker?

My right shoulder is extremely unhappy–from the base of my skull to my arm to my rib cage. Like a 5 or 6 level pain.

I was willing to give it one day. I can hardly cope with the idea of giving it another one. In a minute I’ll consume my chia seed breakfast (which has restored almost normal function to my gut, so there’s that….), take more Ibuprofen (and pray that doesn’t lead to a night of Gnawing Stomach), take a hot shower, put on the rip-off snake  emu oil bullshit, and see if I get to have any of the things I wanted for this day.

Then I have to decide; go back to massage? Call it quits? It’s hard to let go of something that I perceive as being The Only Thing That Helps. Even if right now, it isn’t. Because then I’m back to There’s Nothing That Helps.

Not my favorite place to be.

The Whole Kettle of Fish: A Study in Emotional Exhaustion

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We have returned from a trip to the Chicago-land area to visit the in-laws. As it always ends up, it was challenging.

The Thursday before we were to leave, I took  a very old, very sick dog to the vet for the last time. I had been up all night with him, setting me up for going on “vacation” (and I use the term very loosely) exhausted. It’s never easy to decide to euthanize a dog, and I don’t judge others whom I know love their pets dearly, as do I. We do the best we can.

I had only just returned from the vet, and the child and I were weeping in the hallway (without hugging, since I had dog poop all over me) when my doorbell started ringing over and over again. A peek outside confirmed it was someone with whom I want no contact, and from whom I fear violence. Unlike a normal person, this one chose to ring the bell over and over and over again, pound on the door, ring the bell, etc, for around 15 minutes. The child and I retreated to the back of the house and called the police. They just missed our unwelcome guest, but will now be watching for her. I was so stressed that the responding officer took both my violently shaking hands in his and said, “I can tell you are really frightened. Take a deep breath.”

——

The next day should have been for resting and packing, but I had bought tickets to see Wicked in a nearby city for that night, the night before we would leave for Chicago. We went, but I couldn’t enjoy it as much as I’d have liked–I was too caught up in feeling like I wronged the dog, angry with the unwelcome visitor (who should know better), worried about packing and, oh, the fact that I find flying terrifying. I found that at each musical number, I was beset with an almost overwhelming urge to ugly-cry. We got home late, got up the next day, packed, and headed back to that same city’s airport to fly out.

We were fine from El Paso to Austin, where we circled and circled and due to storms were diverted to Dallas. We sat on the ground in Dallas for three hours, while our flight to Chicago left without us. We flew back to Austin. I had quickly booked a hotel online while we lingered on the tarmac, paying an outrageous sum of $200 for a near-to-the-airport La Quinta. By the time we arrived in Austin (Trapped in Texas, Chapter 1), the airport was all but shut down. They booked us on a morning flight that would go through Dallas once again.

La Quinta refused to accept our distressed passenger voucher because they are total dicks and I hope they are someday financially ruined. We stayed in a room with a shower so gross none of us were willing to use it. The bathroom door wasn’t a door, per se, but two cabinet type doors with shuttered vents (like closet doors) that couldn’t be locked and the knob fell off. The hotel was full to the brim of loud, shouting, running people all night. I had not packed any wine, so I spent the night dozing and hallucinating to the tune of six Benadryl, while also berating myself for my needs.

We made it from Dallas to Chicago, and went directly to the Huge Family Gathering that the in-laws had scheduled so we could “see everyone.” It was raining. They did not, therefore, move the party into their house, they moved it into their filthy garage, next to the truck they for whatever reason did not see fit to move to better accommodate their guests. The first thing my FIL said to my husband was not, “How are you?” or “You must be exhausted.” It was, patting stomach, “Getting a little bigger, huh?”

My MIL informed me in whispers that she hadn’t told my husband but she had developed a serious spinal condition (Spinal Stenosis) and had been unable to walk and might need surgery. This is par for the course. My FIL explained to me and the child that the reason it was raining here but California had a drought was because “the liberals” got rid of the smog, which used to hold the rain in California. The child is 13 and he was baffled by this amazing, magical bullshit. We met cousins with whom we had nothing in common. We talked to other people about themselves and no one asked me much about me (also par for the course). Oh, except for when my FIL told my husband’s cousin that she should have me make her wedding dress, and also that I make, “Crazy weird costumes with funny legs and stuff.”

Oh yes, I know that this is what the FIL considers “praising” but I am far too evolved to accept that being passive aggressive is anything other than what it is. Which makes it hard for me with them, since I won’t play pretend.

The evening goes on and on and on until I finally say, “I am too tired. I must go to bed.” Then I am stranded in the filthy, moldy basement because not only are there stairs, said stairs have a pretend railing that threatens to fall off should one use it. My husband realizes this belatedly.

There are stairs at my BIL’s house, which means I must carefully plan my ups and downs. There is also an atmosphere of suppressed rage that I am especially attuned to, and which my spouse can’t notice. It takes us forever to get our shit together the next day, sitting in the ‘burbs in the rain, and we finally meet up at a Dave and Busters. I drink. I can’t help but simply order two drinks per encounter with the parents-in-law. The child balks initially (look at all those KIDS, he says, in disgust) but then has fun. Then we all retire to the BIL’s to sit and stare at each other.

The BIL disappears to the basement to play video games with the child. The MIL asks how my hands are (it has been two years since diagnosis, they still can’t stick with a conversation long enough to find out what I have). I say they aren’t very good. I mention that since it’s genetic, I have to just try to pace myself. My FIL asks me if changing my diet would help. I say, very evenly, that this is a GENETIC disorder, meaning my GENES are flawed, and the GENE that is flawed is present in 90% of the body’s structures, so NO, it’s not an issue of changing my diet. He falls back to his climate change theory and then they spend 45 minutes giving us an intimate blow-by-blow of my MIL’s recent, very scary MRSA infection. The MIL can hardly tell her own story because the FIL is trying to talk over her. My silly story is left far behind.I go to bed at 8:00 pm, alone, which is how it always works there.

Everything we eat is gluten. I give up and accept that I will just take immodium every day and gain five pounds.

Day three it rains. The BIL takes the child to the movies and the husband and I go to a nearby suburb’s charming downtown, have an expensive lunch and a bottle of wine, wander about, then collect them. We later meet the in-laws for dinner at an Italian restaurant they like. I stick my FIL with buying my dinner and two glasses of wine. My MIL mentions that we aren’t staying for very long. I resist mentioning that it feels like a life sentence. We planned four full days–not our fault one was lost to travel, but that one still would’ve been spent sitting in their goddamned garage. I mention that guests, like fish, begin to smell after three days. She agrees gaily, entirely missing the point, which is that we are staying four and when they come out to see us, they never stay less than an entire week.

Day four we go into the city. The in-laws refuse to go with us, but resent that we aren’t, I guess, sitting in their living room. We take the train, and are planning to take a boat tour of downtown architecture. The BIL leads us on a forced march that despite claims of, “We’re almost there” is far, far too long and too fast and too many stairs for me. My husband weakly mentions maybe a cab but is overruled by the BIL.

I should have stopped. I should have insisted on a cab. I relied on my spouse who cannot function or be decisive around his family. So it’s my own fault that every step I go up now, my left knee snaps and then grinds.

The boat tour was fun. Then we faced another forced march through the city, where we couldn’t find anywhere to eat, where the husband couldn’t make a decision, and there were words in the business district. I was hangry, exhausted physically and emotionally, and as usual, he didn’t have my back.

Upon returning we declined meeting the inlaws for dinner, and I went to bed. Alone. Early.

We met the inlaws the next day for breakfast before our flight. They, predictably, chose a place that could be called “Breakfast in Anywhere, USA”. They aren’t gourmets. Any anecdote I related about things that interest me was met with a complete lack of understanding, being talked over by my FIL with his penguin laugh, or silence.

Soon, the husband and I will have a little post-mortem, and I will explain that this trip we just finished? It’s the last one I’m taking to Chicago.

Someone’s got to have my back, because it hurts right now, along with my hips, my knees, my ankles and my calves.

Jumbled Thoughts and a Jeep

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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.

Oh, Yes, *More* Would Be Lovely

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I’m sick. At the almost worst possible time to be sick, I am felled with snot, buzzing nose, ringing ears, cough and fever. I have from now (almost 11:00 am on Friday) until Sunday at about 5:00 pm to get vastly better in time for the first dress rehearsal of 12th Night. I went in today ONLY because I had a student who said she would be in at 9:00 am to work on her build for this show, and my coworker wasn’t going to be in until 11:00. You know how it is, when you are sick, and every step is measured and harder and exhausting? Get up, take a shower, put on the makeup, get dressed, get in the car, go to work. Then, said student didn’t waltz in until just after 10:00 am, when my coworker (knowing I was sick) arrived early. So, there was no reason for me to go in at all. Twenty-year olds and their self-centeredness, I swear. I was offered no apology, either.

So I have dragged myself home. Having EDS and chronic pain and all the related things makes it that much harder to tolerate anything else going wrong. Of course people get sick, but my reserve for such events feels dangerously low already. Something alarming is threatened in my personal life as well, which has taken the stress level to Defcon 11 plus infinity. The personal life thing will likely resolve and go the way of many similar flare ups that seemed really huge and then died out, but again, how much reserve do I have? Daily chronic pain chips away at my reserves until I cannot afford to think anything beyond, “What do I need to do NOW to feel better?” And so, in the face of a bad cold or something that might happen in the future, I have to rededicate myself to just the Now.

Right Now, the possible bad thing hasn’t happened.

Right Now, I do not have to go to dress rehearsal.

Right Now, I am caught up at work.

Right Now, I am hungry and need lunch.

That’s it. Pretty simple. The hardest things are always the simplest.

The Muse is Accustomed to Being Fired

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I’ve had to let the muse go due to intense hip, back, shoulder, wrist and hand pain. No longer am I enamored of my patchwork collection, instead I am judging it wanting and a waste of time. It probably isn’t either of those things but the chronic-pain-colored glasses view it as such. Every step I took yesterday hurt my hips like a wide band across my lap, from deep in the joint to radiating outward over the muscles of my thighs. By the end of the day, of course, it was worse and I lost my composure entirely and had a sobbing fit in my bed while the husband and the dog tried to figure out what to do with me.

I suspect my emotional fragility at the moment is partly due to the above and maybe somewhat influenced by hormones (O, perimenopause, you wretched, wretched bitch). While I cavalierly said I didn’t care if I was once again making a collection of things no one would buy, today I DO care about this and perused my Etsy shop just to make myself feel worse. I don’t know why I cling to Etsy when I haven’t the time to devote to keeping it up. It’s the excuse for my thrifting addiction, “I can sell it on Etsy” but no, no I can’t, not consistently. There are times, like today, when I feel like my constant making of things is foolish and sad since rarely do I have an answer to “What will you do with this?” or “Who would buy this?” Earlier this week I was content to simply be creating, happy to be in the process and satisfied by the process and the products. But the process that makes me so happy and satisfied is the same process that means I was in bed crying at 8:00 pm due to pain.

The Shrink and I are working very hard on being in the Now, since that’s the only thing we have any control over. Last night, eyes leaking, my brain kept saying, “Okay, so this is the Now but the Now is horrible and what if it’s the new forever (no, no, forgive yourself for that and go back to now) Now sucks, Now is awful!” Or, as my husband finally put it (canceling out hours of mental looping and self-criticism) “Today’s just a bad day.” Yes. And I have to learn not to then tack on, “And what if tomorrow is, too? Or worse?” Because I don’t know that, and I can’t determine that until tomorrow becomes the Now. It’s a bit of a rabbit hole.

So today is slightly better so far except that I feel like a giant, potentially leaky vessel of tears. I have a massage and maybe that will ease some of the pain. Maybe I will look at my last assemblage of pieces and find it more favorable than I did yesterday. Maybe tonight will not be a night wherein I find myself freaked out about not having pain drugs, sobbing into the dog’s neck and panicking about the future. A future in which I will possibly drown in clothes, fabric, and partially finished quilts.

Hierarchy of Agonies

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Of course there is one. My back hurts, I rank it a legit, understandable pain. My left knee hurts I rank it as legitimate-I-guess but also unwarranted, knee, settle down. My ankles hurt and they rank Legit, geez, one look at the MRI(s) and clearly, how could they not hurt?

But there is this one thing that happens that makes me furiously, unreasonably angry and I rank it as entirely stupid. A stupid, stupid, stupid pain, not legit. Sometimes I get a muscle spasm of some sort in my scalp, and it’s like being stabbed, STABBED, every 30 seconds or so. It’s the kind of pain that if it just turned on and never turned off, I’d be on the floor and incoherent in mere minutes, but instead I get little breaks in-between (kind of like labor, now that I think about it). Just long enough to cringe in anticipation of the stab and then feel extremely angry when it happens again. Stoppit, I tell it. “You are not a real pain. You are not legit, go away.” When I try to explain it to people they can’t understand it. No one else I know has ever had this particular pain.

I imagine that all my other pains, my Legit Pains, they would cut this pain and close ranks and whisper when it walked by, they would go all Mean Girls on this pain, because it doesn’t count, it’s stupid, it’s dumb, its mother wears combat boots. I have trouble being even a little bit nice when this pain is happening, it hurts so much. I consider trying my own form of acupuncture with my quilting pins, I jam my knuckle into it and try to crush it out of the way.

It’s funny how my mind can’t just go, “Oh, that is pain.” and instead sorts them and hugs some and kicks others in the pants and keeps on sorting like a bouncer at an exclusive club. “You, you, you…okay, I guess you, but watch it, you….WAIT A MINNIT THERE PAL YOU AIN’T IN DIS HERE CLUB, SEE, yous can take yer bizness elsewhere, hear?”

But Mr Scalp Spasm, he doesn’t really care. He just takes a breath, waits a beat, and stabs me again. Bastard.