Me at 32

I found a blast from the past today that I thought I’d share.  It’s a letter to my then partner, my “boyfriend” always seemed like the wrong word since we lived together, shared expenses, household and life responsibilities, and planned (I had thought) a future together.  Our future, it turns out, was predicated on my not being ill.  I had surgery for endometriosis in March of 2002, about a year and a half into our relationship.  We were already living together then, although informally….i.e., he had moved into my place.  In May, we decided to move in together.  In June, we moved.  The weekend we moved, I caught Lyme Disease.  I have not been healthy since.  See my “about me” post for more details on the diagnosis, progression, and treatment.

My boyfriend, see I’ve decided just now that he should be properly called a boyfriend with emphasis on BOY, had been raised in a family that believed that illness was largely a state of mind.  They had persisted in this impression throughout my boyfriend’s mother’s treatment for breast cancer, something that had taken a toll on the family and on the mom.  She was in remission, but on a lot of psych meds and drinking heavily.  Actually, they all drank heavily, but believed that it was FUN drinking and contrived fun situations – I swear – to provide opportunities to indulge their family drinking problem.  But the substance use was worse for the people in the family who had been touched by serious illness.  E.g., ex-bf had overcome a prescription drug addiction (he was a type 1 diabetic, also not ok in this family) and mom, well, let’s just say I once found mom passed out in the bathroom where the rest of the family was happy to leave her rather than even remotely acknowledge that she was not ok and that this drinking was not FUN drinking.

Me, I’m an abuse survivor.  When I make reference in this letter to tough times in the past, I am referring largely to that.  My life was never easy, but in 2003 it was becoming hard in a way that I had not had to deal with before and in a way that a large number of people (thankfully) don’t need to deal with until they are rather elderly and facing the fact that more often than not and with increasing frequency their health – which I believe can be functionally defined not just in physical terms but in terms of the blind faith that this foot goes this way now, that organ X chugs along quietly and efficiently, that A, B, and C can be done routinely and without any extra thought or planning or “accommodation” – is not going to be there when they need it.

So there’s your context.  Read on.  I think it’s elucidating to see the snapshot of how it feels to be coming to grips with what seems to be not just a chronic illness but a chronic mystery illness.  The solitude you can feel even in your most intimate relationships, the crushing disappointment, the self blame, anger, and uncertainty.

btw, I do not think I ever gave him this letter.  I do things like this to organize my thoughts and it is rare that I would not address matters like this face to face in a discussion.

December 14, 2003

I don’t know where to start.  It’s not like I didn’t know life could be hard.  I thought it always had been difficult, but I had resources then that I don’t have now.  Primarily, I had a trust that I had a future, however good or bad or difficult circumstances would be.  I trusted that I would have a choice about summoning the strength I needed to meet these difficulties.  If I chose not to, then it would fall down around me but it had before and I had picked it up when I was able to.  Now I have no trust that I have a choice, or that if I choose wrong I will have the strength to recover myself.  I can’t be strong now and I have no sense that I can rely on strength in the future.  This is so horribly crippling.

Every time I think I am recovering my strength, I am faced with some reminder of how weak I am right now.  It is devastating for my abilities to handle difficulties.  The best word for this is despair.  It is what I wake up feeling and what I go to bed feeling.  Every headache, every pain in my ankles, every time my hands swell, every time I have to stop in the middle of a meal and lie down because I feel too weak to sit up, I try not to let it overwhelm me.  I try all the tricks I had learned before in past difficult times, but they don’t work because I haven’t got the trust that this will pass.  These reminders keep telling me that it won’t.

I try to tell myself there is a trend towards getting better.  I try to tell myself that my negative attitude is what is holding me back.  But the disappointment I feel when I backslide even after or in the middle of feeling positive is so intense that I sometimes give in to the temptation to hold back.

I can’t imagine what this looks like to you.  I can only witness what your reaction is.  You see me as angry now, as mad at you when I am inconsolably irritable.  That is what I see.  I don’t know how you feel about it.  I suspect it is bad.  And I have already started mourning for having lost a wonderful relationship because of this.  I feel like it is my fault, although I know that this is just another casualty of the illness, of the rotten physical circumstances I have fallen into.  But it is hard not to feel like I should be able to do something about it.  I am so used to being able to do something about it.  I am angry, but it is mostly at myself, and even that is misplaced.  I get mad at the doctors, but then I see you championing them, and then I get angry at you because you are defending the people who I feel I can at least be justifiably quite upset with.  If I can’t be mad at them, blame them somewhat for prolonging and exacerbating my distress, then it feels like it stands to reason that it must be my fault, in your eyes.  It is strange logic, but given how I’ve been left with approaching the whole issue, if you remove them as a justified target of my anger, that leaves only myself.

I can’t imagine a future with you and I can’t imagine one without you.  I have always been able to see at least two paths for me in any situation, and now I have none.  It has been a consolation for me in the past, my strength is generally a well conceived hallucination based on the idea of possibilities, potential.  There is none now that is even plausibly certain.  There is none that comes without the fear of intense physical difficulty and even total failure.  I imagine myself homeless sometimes, I worry about who would care for me, about what would happen to my cat.  I worry that I won’t finish grad school and will have to take a job that has stricter time requirements and when I think of that scenario, I am completely filled with dread because I have no real sense that I could perform at a level that would be necessary to hold even a good job, let alone one that pays barely over minimum wage.  I worry that I will struggle through grad school and find myself unemployable anyhow.  I worry that I will follow you blindly to someplace far away and still have these horrible choices in front of me, transplanting the crisis to another time and place instead of living it now.

At one point this Fall when I was feeling better, I thought of asking you to marry me.  I immediately began to feel apprehensive, not only at the thoughts of marriage after a failed one, but at the thoughts of hitching you to a dead end.  And you are sweet enough and still hopeful enough that you might actually go through with it.  I can’t do that to you.

keystone camp

I’ve written before about how unwelcoming my place of work is for individuals with disabilities.  And thankfully, I am leaving.  Trying to be hopeful that the new place will be better.  In the meantime, I am trying to process the thoughts and feelings that leaving is accelerating, exacerbating, and otherwise magnifying.  On top of this all, this week, there was an incident that put an exclamation point on their incompetence while also triggering some of my long felt issues about the competency of people to deal with someone who is sick.

Where I work is a lot like a summer camp, so I’ll use those terms to describe what happened.  A camper became quite ill.  She reported that she didn’t feel good to the camp counselor – I happened to overhear it.  I looked over to see the camp counselor on her radio to someone, with the camper leaning against a wall and looking awful.  The camp counselor kept asking the camper if what she was experiencing was “normal” for her, to which the camper replied “no”.  This went on for a while, although it felt like forever I suspect really it was no more than a minute.  Finally, I came over and offered to help.  “Do you need me to sit with her while you go for help?” I asked.  To which the camp counselor replied, testily, that she didn’t and that SHE knew the camper’s medical history so she had to stay with her.

Um.  Ok.  “How about we find a place to sit down?”  I suggested.

Now please keep in mind, I had no idea what was up with this camper.  But I saw her color, and I saw that she looked shiny, which says to me sweaty, which in conjunction with her color says “I’m gonna pass out”.  And having been that kid, oh so damned many times, I was just not going to leave her on her feet while she was clearly about to become abruptly unable to stay upright.

Over to some benches.  Is there a private place where we can go?  the camp counselor asked.  There were lots of people, other campers and counselors and staff, milling around.  I don’t know.  I tried some doors, all locked.  No park rangers around, so again I recommended the camp counselor go…this time to ask for a key, again I was rebuffed.  Off I went.  Back I came, keyless because no one had a key (are you effing kidding me?) to find an empty couch, no camper, no counselor.  The counselor’s back pack was sitting there though.  Shit.  I ask one of the other campers.  “EMS escorted her away”.  Away to where?  No one knew.  I figured as long as she was now in the more capable hands of EMS that it would be ok and that I should just go back to the job I was over in that part of the camp to do.  A short time later, I saw a woman storming down the trail behind me.  I went over and asked “are you here for the sick camper?”  She said yes, asked where the camper was, said that the camper’s mother was in her car outside and they needed to find the camper.  I went to a group of camp counselors and asked “Who knows where the camp counselor took the sick camper?”  And it was like a herd of deer in headlights.  “She was just outside, you passed her when you came in.”  I got babbling answers.  “That’s group 5” someone offered unhelpfully.  “Can someone text her and ask her where she is…please….now?”

Later, one of the other staff members asked me what had been going on.  I described a little of the situation, to which she replied “Oh, probably dehydrated”.  I thought “WTF?!”  And I said “I’m not sure that was it.”

And you know what?  It turned out that wasn’t it.  What it was was a hell of a lot worse because this camper has a life threatening endocrine condition.  And we bumbled around like effing idiots leaving this camper standing while questions were shot at her as if she were suspected of shop lifting or something.

Before I knew, but did suspect, how bad the situation actually was, I wrote to the head counselor to offer the suggestion that the counselors be given some clear protocols and training in first aid – minimally to not leave a sick camper standing while they messed about and figured out what to do.  I didn’t say “messed about” and I was a lot nicer about it than the tone in this post.  You catch more flies with honey, as the saying goes.  But I am bothered.  Since it happened, I have found myself having periods of anger, some self recrimination that I didn’t just say “get out of my way dumbass, I’m in charge here” and take over, and a resolution that in the future I will not hesitate if the person who is “handling” it looks like an incompetent.

Got it

I got the job!

I haven’t committed yet, I told HR I needed to talk to the supervisor first.  We chatted and I disclosed that I have some chronic health problems that require regular outpatient appointments and treatment, that I am very good at getting my work done and done well despite that if I have the ability to have some work schedule flexibility and catch up from home now and then.  She said this would be fine.  And I also explained about the heat intolerance and the need for an ergonomic desk set up.

This is the first time I have disclosed things like this prior to accepting a job.  It feels good.

The position is right smack in the heart of downtown Big City, a place I used to go to when I was skipping school in middle school, so there are all these fun associations I have with the area.  It’s gorgeous in the winter, around christmas.

There are cons – most of them having to do with the commute.  As I tell my friends “the pros are that it’s downtown.  The cons are that it’s downtown”.  But the people seem pretty cool, the job seems pretty cool, and over all I am exceptionally psyched and relieved that I can now tell my current employer to take this job and shove it, that’s right, shove it right up in there!

Woo!

Gonna take a little time off in between and try to get hooked up with some pool PT and another round of IV fluids, get through a month of the B12 shots, see a nutritionist to work on a better diet, and well, that’s it.  Relax. Maybe submit that complaint to the EEOC.  🙂

Mrs. Peacock, in the library, with the revolver!

One medical mystery solved this week.  Yes, you heard that right.  I finally have a few answers.  It doesn’t explain EVERYTHING, but it does explain something that has caused me significant disability in the past and which I have had to try to work around without really knowing what it is I need to avoid in terms of a trigger.

This would be the allergy test.

color photo of a woman's back with positive reactions to allergen patch testing.

Itchy-owie mess.

I had patch testing, not being super psyched about the idea of them injecting stuff under my skin since when I react, I react STRONGLY.  There were three patch test panels placed from the TRUE test – in the picture, these three panels are the 1st, 2nd, and 3rd if you count from my left to my right.  Because I asked for it specifically, they also did metal testing.  The metal test involved two panels – they are on my right shoulder in the picture here.   Each panel, in both the TRUE test and the metal set, has about a dozen substances in individual disks which are placed on the skin and then held there with adhesive for 48 hours before removal.  At the 48 hour mark, the results are given an initial read.  I was told that the nurse would read it then I’d be sent on my way for the day, to return the next for another (final) reading.  In my case, at least one of the substances could have been read at about hour 12 I think.  The nurse actually made a little “oh” noise when she removed that particular panel from my back.  “Something reacted I guess?” I asked.  “Yes….it’s a strong reaction,” she said.  I told her “I react strongly to some things.  That’s why I’m having this done.  Two of the most severe were to the insoles of my shoes and to the elastic in my underwear, you know, around the waist and legs.  Blistering, itching, it was bad.”  She told me that she was going to have the fellow come look at this one before I left that day.  “Wow!” he exclaimed, “that’s a severe reaction.”  I felt like telling him he could take a picture if he wanted to.  This was  Big Ass Teaching Hospital after all.  I was told that I could feel free to go ahead and use hydrocortisone ointment on it despite the ban on that sort of thing before and during testing.  “We know that one is positive” the fellow said.  “And you can take antihistamines.”  I do.  I am.  This is my reaction on benadryl, ranitidine, and amitriptyline.

Which one was the severe reaction that now solves one of my medical mysteries?  It was a substance called Thiuram mix.  Thiurams are rubber accelerators. In the picture, the Thiuram mix patch is the lower right corner of the second panel in on my left shoulder.  The nurse brought me a pamphlet on Thiurams, and pointed out that it is found in some shoes and in the elastics of some underwear and bathing suits.  Well I’ll be…so now I know.  And I also know that it is in other things which, given how severely I react to it, I should avoid the hell out of.  Imagine inhaling this shit?

Other notable reactions included three spots that look like bruises on the metal panel, a strong reaction to Nickel (twice, it’s on one of the TRUE test panels and one of the metal panels), not surprising.  The marker was a little smudgy, but you can see that the panels with the most positive results are the metal panels (right shoulder).  The large hive on the first TRUE test panel on my left shoulder is the TRUE test nickel patch, I’m pretty sure.

tape and sponges

Paper tape, and some sort of adhesive panels, are holding a multitude of potential allergens tight against my skin right now.  I had the panels for cutaneous allergy testing applied yesterday.  A quick appointment in a chilly office with a nurse I may have taught when I was at Big Effing U in the New England Outback.  Small world.  I go back tomorrow to have the stuff removed and for a 48 hour reading.  Then back again on Thursday for a final reading and a meeting with the doctor.

One thing to note:  when the nurse was telling me how long to expect for these appointments, she said “Wednesday will be a little longer than today, you’ll need to wait 20 minutes after the nurse takes off the panels before the reading.  And Thursday will be the quickest!”  I said “Oh, I thought on Thursday the doctor would  go over the results and what they mean.”  “Yes!” she said brightly, without a hint of awareness that there was anything odd about the idea that the interpretation and talking part should be the shortest appointment of the set.

I know it’s not just me who thinks this whole thing is a bit backwards.  It just seems reasonable that the interpretation and discussion should be the part with the biggest time investment.  The appointment Monday was a total of 15 minutes – so Thursday, when the doc talks to me, is anticipated to be less than that.  I have this image of the doctor coming in and talking like those legal disclaimers at the end of radio ads for cars.

Sponge baths for me for today and tomorrow.  Blech.  I’ll be happy to have these things off my back.

Ready, set, move!

All moved in!  I’m writing this post on an iPad, and exercise in various sorts of frustration so it’ll be brief.

waiting to hear about the new job – interview was great.  Work accommodations are progressing….slowly!  I may be changing my schedule so I don’t have to be in so early.  I think it may help with the gut stuff at least.  And speaking of gut stuff, I think I identified a culprit in my worsening symptoms.  Nondairy creamer.  I switched to rice milk and so far, doing better.  We will see how it plays out.  I think I will be charging my docs if it turns out that this was it, or a big part of it.  ;p