Tag Archives: doldrums

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

Standard

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.

Advertisements

Trending Downward

Standard

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

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

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

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

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

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

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

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

Where Have I Been? Nowhere, Just Here.

Standard

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.

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.

Oh, Yes, *More* Would Be Lovely

Standard

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.

“Why?” Is Probably a Useless Question

Standard

Sometimes I wake up feeling low. I’m not in any more pain than usual, but I feel like I am defeated anyway. My brain reminds me that I live with this level of pain all the time, and do okay with it, so what’s the deal today? I review, as I lay in bed,all the things that are good:

We had friends over (impromptu) last night and clicked with them (couple friends are SO hard to find, it’s a tricky dynamic). We did not stay up too late, we did not over-imbibe, I didn’t eat too much, my stomach didn’t demand my attention at 3:00 am (Not much. All it needed was a glass of cold water to put it to bed). I did not wake up with my internal judge saying, “I can’t believe you said/did that!”

I have the next three days off work, I will have time to draw and sew, I feel inspired creatively.

So, then, what gives? My brain; really, my ego, could spend hours trying to figure out why I feel down and also judging me for feeling down and criticizing me for being down, running back to the above and demanding why I would be so perverse as to dare to feel down after a nice night? What the hell is wrong with you, my inner judge demands.

I try sometimes to imagine if someone else were telling me this, and what I would say.

Your pain level doesn’t have to change for you to have a day where even though you’ve carried this load well for X amount of time, you don’t have a moment where you are tired and resentful of the burden. If someone pinched you everyday, even though you know that it will hurt for a moment and feel better, you’d still probably have days where you felt like if someone pinched you even one more damn time, you might lose your mind—or even feel sad knowing that you’re going to be pinched every single day and fearful that someone might start pinching you two or more times a day, but there won’t be a day with no pinching ever again. 

The husband half of the new couple friends was interested in my gluten free status, and I said that I had tried it for joint pain, which hadn’t worked, but it did help my gut. This is my general very vague explanation. Later he asked me more about this joint pain, what was it, and I explained the whole EDS thing. His sister is an internist and rheumatologist who practices in a nearby (3 hours away) city, and sounds like a possible candidate to manage me. The wife half has a brother with an unusual genetic condition that the husband’s sister has helped with, so they are a bit familiar with my world.  My ego is like, “DUDE, that is seriously good news, what the hell is wrong with you?”

The fact that maybe finding a doctor is good news doesn’t also mean that you can’t wish you didn’t need a doctor and that you didn’t have anything so unusual wrong with you and that you don’t want people to feel sorry for you even as you know of course they would, who would want their friend to have this crappy disorder? They probably don’t view you as an object of pity, they just want to help–but it’s okay to wish you didn’t need any help in the first place. 

Also I hurt my thumb yesterday, doing something that I judge as being not a valid thing to hurt yourself doing. I was turning a piece of fabric that would be a tie on a dress, and the pinching and pulling action of doing that suddenly hurt like hell and made it feel like I’d torn my thumb out of the socket. Which, maybe I did, that can happen. It’s a small thing, though, and there are better ways to accomplish what I was doing so that it isn’t as painful but dammit, there is a lot riding on my hands not breaking down, even as I know they are.

Of course you are going to feel upset by being defeated by what seems like a small task–we know the big things we can’t do, but when we run into these tiny things it’s terribly frustrating and scary. Also, given that you can’t take anything for pain, *any* new pain feels a little bit like it’s just way too much to deal with. That’s perfectly understandable. 

But, I do not have time for this feeling. I need to be steaming forward on my life, not sitting around feeling like crying over things I can’t do anything about. I’ve got stuff to do, and I want to do it. I haven’t got space in my life for moping.

Maybe you should take it easy on yourself. Let yourself feel how you are feeling. Crying isn’t the worst activity in the world, you know. Give yourself a break. 

Ah, yes. Give myself a break. So much harder than it sounds.