Monthly Archives: July 2015

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.

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.

Summer is Broken

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Last Thursday night, three years to the damn day that the child broke his ankle the first time, we got a phone call, set down our wine glasses, collected insurance cards and crutches, and drove quickly to the gym, where the child had attempted a “webster” from a 12 foot high platform, missed his rotation and landed squarely on his ankle. The two teenage girls in charge of the gym that night (srsly, amirite?) were pretty freaked out about the sound it made (POP) and the immediate distortion of his anatomy (ankles don’t typically have weird knobs on the side the size of baseballs) and that it was purple.

As is so very, very typical for healthcare here in our corner of the world (but we don’t have tornadoes or hurricanes or much earthquakes), we arrived at the ER at 8:00 pm, and at 1:00 am someone confirmed that his ankle was broken. But we knew that. The answer(s) to questions like “how bad” were less clear. The ER physician was certain that we would be seen the next day by an orthopedic surgeon. I recount the exchange and subsequent exchanges here:

Doctor 1 Doctor 2

We got up very early to corral child and head to the appointment, which was with a doctor whose name is Dr. Doctor and I cannot take that shit seriously AT ALL and each time I hear or say it my brain finishes it with, “Can’t you see I’m burning, burning?” Dr. Doctor (can’t you see I’m burning….) himself is like, way over 6′ tall and has the standard kind of odd manner of a surgeon. The upshot, though, is that the child requires surgery to pin the ankle back together. This has been scheduled for Friday afternoon. The child and I returned home and once I had him parked in front of the XBox I set to work cancelling our upcoming vacation.

With great sadness I requested a refund for the sunset, Georgia O’Keefe landscape trail ride at The Ghost Ranch. I contacted the trip insurance company and requested a claim packet for the vacation rental fee. I corresponded with the charming owners of the vacation rental about our shift from paying for our own vacation to helping fund one for the orthopedic surgeon.I cancelled the lovely pet-sitter I had finally found to care for the remaining population here at Casa de Pets Die In the Summer.  I did a lot of dramatic sighing. I even called a left a message for my mother-in-law, since the man to whom I am married has not yet even called his parents about their only grandchild’s lower extremity.

I’ve also realized that I do not know the answers to some questions. Will they take the hardware back out when the ankle is healed? Um…I don’t think so? But….Huh. Can he have a spinal instead of  general anesthesia? Are you thinking that we will meet the anesthesiologist more than five minutes before they wheel him back to the OR? Because that’s not going to happen. The doctor sent us for a CT scan and the chatty tech (who initially thought the child was a girl, leading me to giggle to him later, “Are they saying to themselves how sorry they feel for that poor girl with the mustache?”) said, “Oh, my. He broke it good–don’t do anything halfway! You taught him well, mom!”

I am not sure if I was being insulted or not. My hair is a perfect shade of citron so maybe.

Meanwhile, the much-anticipated and frequently re-started summer break has finally ground itself to a halt and all hope is lost. Now we are on house arrest, waiting hand and foot on a child who can’t put any weight on his right leg, and who isn’t so much a reader. Buy stock in GameStop, kids.

A Cloudy Morning

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One of my chief pleasures in the summer is listening to (and watching) the endless hummingbird war over the feeder. This morning it is cloudy and raining, so the windows are open and I can hear all the little Jetsons sounds they make as they chase each other away from a feeder that contains enough food to support the entire backyard colony. Yet, it’s not good if there’s enough—I guess hummingbirds are capitalists at heart.

Lately I get up and check my blood pressure, my husband brings me coffee (we have a running joke/dialogue around that:he says, “I brought you something” and I say “AND some coffee?” and he says “Careful, it’s hot.” and I say, “So’s the coffee.” this is the secret to marriage—regular, prescribed dialogue. Or someone to bring you coffee, idk which) and I start soaking two tablespoons of chia seeds in either water or, this week, dark chocolate cashew milk. I am struggling with the Propanolol; even though the dose is very low, I think it is causing some shortness of breath (it’s known to aggravate asthma) and, I suspect, greater heart irregularities. Also, they aren’t kidding about it making dreams weird. I’ve had nightmares and long, strange dreams that are very intense.

On the flip side, it seems to prime my sleep switch without making me drowsy; it’s like I just go to sleep like a normal person might. I faintly remember the days of simply lying down to go to sleep, and it’s like a fairy tale. More often than not, I wake in the morning to a still full glass of wine (which I then return through a funnel to the bottle, yes I am cheap), which is a congratulatory event instead of my usual initial thoughts of guilt and self-loathing. It’s different….

I’m trying to be good about taking vitamins, so once I eat the slightly jelly, faintly gritty chia seed/cashew milk potion, I take eye vitamins, vitamin D, two Glucosamin Chondrotin and a probiotic. This chia seed business has resulted in the closest thing to normal gut function I’ve had in, oh, years. Gritty or not, slimy or not, I’m committed. The cashew milk will not have a second shot at breakfast, though, because it’s fairly gross–when this carton is gone, we will say goodbye. Too thin to be milk, too thick to be juice….no me gusta.

Last 4th of July weekend I was crashing off of Xanax, plunging into serotonin syndrome with Cymbalta, and texting my PCP as I clenched my teeth, cried, and couldn’t sit still. This year I’m just a little short of breath and floaty feeling, along with odd heart rhythms. This, then, is an improvement. Clearly my orthostatic/autonomic disorders are affected by hot weather. Hence my happiness about the rain, even though it may kill the whole fireworks option. The red and white fireworks tent in the field behind our house charms me with its circus implications during the day and annoys us with its intrusive lighting at night.

Yesterday’s drawing:

07 02 2015

It’s whimsical. The child criticized it, “What’s with her feet? Is she an amputee? Wait, why are you mad?” I pointed out, testily, that the whole point of this daily drawing exercise is to suspend judgement–mine or other people’s. Or, maybe it’s about at least being tough enough to resist the needling of a 13 year old. There’s the challenge.

Skirting the Edge

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More drawings.

6 30 2015

Then:

07 01 2015

Then:

07 01 2015 a

Here’s where I went awry, because I started thinking about audience. I got a lot of positive feedback on the first one with these two women, so then they wanted to say more so I drew this one. But then I loved it even though it felt unfinished….so I colored it:

07 02 2015 color

Meh. It lost depth in photography/editing, which is always true. I also don’t like the tooth of the paper I am using–and it’s not what I normally use when I color and complete a drawing. This stuff is a cheap drawing paper, and most of my work is finished on a vellum-finish bristol board–so it’s a lot smoother. I wanted a sort of sensual, private moment versus the more public, circus/audience sense I get from the first drawing with the striped costumes. It’s not pleasing to me at the moment.

See? Too much thinking–that’s not the point of the exercise.

Onward.