Day 193. A Zero Day, Skipping Stones

This will be a short one, skipping topics like skipping stones across the surface of a pond.  It’s about yesterday and what it did to my body, about what I did for an art project, and what I need to do for homework.

Yesterday I had a to-do list of seven items.  I accomplished an amazing one-seventh of them when the Comcast man came and went.  As for the rest, well, I scratched through them in red pen: incomplete.

Here is why:  when I awoke, I wasn’t sure about how I felt.  In an iffy situation like that, I try to put makeup on and dress as though I am about to go somewhere, so that I will create a sense of momentum (and sometimes propel myself out of a funk).  I didn’t realize until after the Comcast guy had left that I had applied the eyebrow pencil a trifle dark.

Old Lady Eyebrows

People, this makeup mistake is a definitive crazy old lady marker.  There is no pussyfooting around it.  I looked in the mirror and laughed at myself.

Trouble was, I just felt all wrong.  My body was on fire.  To give a simple example, I wear soft, fleecy socks all the time around the house because they are warm and protect my feet, from which the fat pads the rest of you have, have disappeared (making walking on them feel…well, like walking on sharp bones).  Yesterday, though, the little nubbies on my regular soft socks felt like they were razors across my toes.  I kept telling myself to ignore it.  You know, like, “Hey, stupid.  You have too much time on your hands.  If you were driving railroad spikes someplace, your stupid foot pain would not come to mind.”  Trouble was, this stupid food pain was starting to feel like railroad spikes driven into my toes.  Finally, I had to dig through the various pairs I have to find the very newest and softest pair of soft socks on which the little nubs are still perfectly squishy.  That was only one part of my body that felt like it was being poked, prodded or twisted.  There were the ankles, the wrists, the knees, the hips….WTF?  I thought this was all going to resolve itself once the PT was over!

Since I was no good for the concentration involved in doing the kind of writing I am doing now, I found some Zentangles to work on.  I posted one last time; I worked on the one here most of the day yesterday, until my hands hurt so much I had to stop, and then I slept for a while.  Then I started again.  They are fun to do when I need to stay in bed because no paints are required, just a pencil, eraser, pen, and a ruler.

I tried meditating before working on my art, just as I am making sure to meditate before I write each time, so that I stay on task and feel the work flow out of me.  I’ve been trying to work on doing that, as something I have been discussing with my therapist.

My therapist, Dr. A., who specializes in working with people to deal with chronic pain and grave illness (rather than “how do you feel about your parents” kind of stuff) does cool things like help with meditation and things like that.

This week, though, he has me stumped.  He gave me an assignment to think about what I need to work on, in therapy. To him, that means what I need to improve, discuss, or problem solve as it relates to dealing with my illness or the situations around it.

I am drawing a complete blank.

It isn’t that I feel cured or resolved by any means.  I just feel a great blank when I try to think of the answer, because I often draw a great  blank when I try to think deeply. Now, I need to come up with something by Monday. Help a sistah out. What do you guys think?  I  thought it would be cool for my brilliant readers to opine (since I am so blind to my own situation).  This means you!

Have you been given similar therapeutic assignments? How has it worked for you? What am I missing?


Day 196. Fatigue, PT, and the Pain Doc

This is a Zen Tangle - a sort of glorified brain-emptying brain took several hours this weekend to empty.

I have to come clean about one of the troubles that caused my lengthy mental vacation a few days ago. Because I was under so much duress, pain, and fatigue from physical therapy, I ended up quitting, which felt like a combined defeat and deliverance.

I restarted Physical Therapy on the last week of January this year.  It was a familiar place, since I had been in PT for about six weeks at the same place with the same therapist around the same time last year.  I ended up quitting that time because I got infections in my legs and felt so sick and was hospitalized…it was too hard for me to keep going, ultimately.

But this time, a different doctor had ordered the PT.  Specifically she wanted to work on pain before any exercise took place.  I have knots in the trigger points of just about any muscle group you can think of, especially around my neck and shoulders, my core area, my lower back, and my legs.  That probably explains why I hurt a lot, and (at least to some extent) why I get so tired when I move around.

So Mike’s job was to defuse these little bombs all over me. Since my skin is so tender everywhere, massaging away the trigger points was misery for him; none of the standard methods worked because if he used them, I left the place in more pain than I came in with. So Mike put me on moist heat and a TENS unit (electrical shocks to the muscles) before he started to relax me, and then took the most gentle, feathery approach possible— and distracted me as much as he could.  Most of this was good.  I loved the heat and the TENS unit.  It was yummy.  And what Mike did felt good, sometimes.  And the distraction was great.  He became a pal.  I really like Mike.  He’s the kind of guy I would hang out with.

THAT IS ALL WE DID.  When I complain about PT, people envision my having to do 45 minutes on the rowing machine and another 20 on the treadmill or some ridiculous thing.  HAH!

 No, I was completely exhausted from a fantastic massage.  Mike did this neck thing that was quite possibly one of the most delicious feelings ever.  And I’m including sex in the list of possible feelings.  Seriously, though, just the act of turning over a couple of times on the table, pressing down on my wrists, lying face down (which is very taxing for me, because of my POTS), and the moving around of my tissues and my joints (particularly when he moved my hips and spine around from positional faults), required my immediate, lengthy rest when I got home.

 So, it got to the point that I was having early lunch on Tuesday, leaving for PT, then getting home at 2:30 and having to rest until 4:30 or so. Then I would be starving.  I would eat dinner, but I would be exhausted afterwards, so I would get in bed, and take my pain meds for the night.  I always have writing group on Tuesdays, which was a challenge, but we do it on Skype, so speaking under the covers about writing and doing the occasional writing exercise was okay.  But 10:30 would be it for me.  About half the time, and especially if Writing Group went late, I felt miserable on Wednesday, mainly the result of PT, so it would be a pajama day.  Then it was Thursday, time for PT again, the same rigmarole, and Friday had a 50-50 chance of being lost.  That sucked (particularly since I always have a doctor appointment on Monday and frequently have appointments on Fridays as well).  My ENTIRE week was gone.  It was very hard to make plans at all during the week.

I complained about this problem several times in therapy, and my therapist (who sees only people with chronic pain issues and knows about this stuff), said, “Look, why don’t you call your pain specialist and ask him if there is a medication he can give to help with this. Sometimes the fact that you are so exhausted from the treatment means that you are having pain from it that you’re just not sensing.  It’s a good idea to get his opinion.”  It was good advice, but my intuition was it was going to turn out terribly.  Still I made the call.

Dr. Duckweed, the pain specialist, called me right back.  His response?  “I thought I told you to make an appointment for another epidural injection.”  Me: “Um…I don’t remember that, but I can do that….” Dr. DW: “Oh, COME ON, you know what you were supposed to do! Me: (long silence) I guess I didn’t or I would have made the appointment.  But I’m really, really sorry about that.  Sorry, Dr. Duckweed.  But I am calling because Dr. A suggested I talk with you about my problem.  I have a lot of pain in physical therapy and it exhausts me for two days afterwards.  I was thinking that maybe there is something I can take just during physical therapy.…. Dr. DW:  No, you were supposed to sign up for a shot.  Me:  But, Dr. Duckweed, I get so exhausted.  Dr. DW:  If you’re so tired, go see your primary care doctor.  [bang–hangs up.]

That was helpful.

I was so upset.  What upset me most was that when I get angry, I don’t yell, like Dr. Duckweed.  I cry.  So to keep myself from crying, I got quiet.  That made me so mad.

But then I figured, maybe the guy was right, although he probably didn’t even realize it.  I should call my primary care doctor, who is smart and may figure this out. By some miracle, she had an open appointment the next day, which, if you make doctor appointments at all, you know is miraculous. Besides, I thought, maybe I’m depressed. Maybe I am so panicky and can’t handle two simple appointments per week (and a simple run-in with an otherwise very good doctor) because I’m depressed.  Yes, that’s it.

Dr. Miller, my PCP, was helpful.  She said she would give me the requisite blood test that anyone would expect her to, but we both knew it would be one of the few tests on me that does come out normal. Then, she offered to call Dr. Duckweed to try to reason with him.  She suggested that maybe it was a miscommunication, that he was not understanding the part about the exhaustion.  She wasn’t so sure about depression.  It could be anxiety, but she even wanted to table that until the immediate problem was solved.  So we set an appointment for a month in advance to re-evaluate.

Not long after I got home, she left a message—I had been on another phone call I couldn’t hang up from, damn the luck.  She told me she had talked with the cranky doc, and that he said, oh of course he didn’t understand the exhaustion part.  That’s just muscle pain.  Just treat that with Advil and rest.  Dr. Miller added her part–that if PT was giving me this much muscle pain, why didn’t I quit for the next 4-6 weeks just to see how that improved my mood and pain level.  Then, when we meet next time, we could talk about it.

Well Shit.  Um.  Okay.  I can’t take Advil (or any of its NSAID cousins)— bleeding risk and all.  And um, I know I have told Dr. Duckweed countless times that I live on a heating pad.  Resting is my life.  Jesus.  Did he never take notes on any of our visits?  But at least Dr. Miller saw through to a solution.

Thankfully, my therapist, the wonderful Dr. A., was willing to email with me about this.  We agreed on laying off the PT; if pain and exhaustion had become so central a focus, why continue?  He suggested his acupuncturist, who I called right away.

Not fifteen minutes after I canceled my PT appointments, though, Mike called me back to find out what was wrong.  He also wanted to point out that if I did go to an acupuncturist to be very careful; since I have Addison’s Disease, I am highly prone to infection.  And my VEDS makes me highly prone to bruising.  Was I sure acupuncture was good for me?  I told him I would sort it out, but thanked him because he was quite right in his reasoning.  Still, he wondered, what could I have done better, so I can improve my service.

Horrors.  The worst part of it was that I couldn’t articulate what was wrong with me, what the pain was.  I couldn’t explain why getting the best massage of my life was making me so miserable.  In retrospect, it was like breaking up with someone you really love, for some higher, greater reason.  Then, when they say, but we were so great together, and I really, really loved you, what about that wasn’t good, there’s nothing to say to dispute that.

But a physical therapist is not a masseuse.  The work this guy was doing was pretty intense.  The fact that I mistake him for a masseuse is a testament to his expertise with taking me through some difficult passages.  I don’t think anyone else could do it.  So what about my body won’t put up with it? And still more, why can’t I articulate it?

I think the conflict with the doctor arose from the same problem.  He was angry because I couldn’t give him the right information.  If I had been able to explain the kind of pain I had specifically — in frequency, intensity, and duration — he would have known immediately what to do.

My words leave me when it comes to my body.  I wonder whether it is a factor of having very poor proprioception, misguided orientation towards my body in space.  Thus, I don’t know what hurts or where, just that it hurts, all of it.  Or I wonder whether it is I try so hard to tune out the message that anything at all hurts (I do this with such great conviction, I can’t express it to you earnestly enough); it is as though I say to myself those words in the Pink Floyd song,

There is no pain, you are receding; a distant ship, smoke on the horizon.  You are only coming through in waves.  Your lips move but I can’t hear what you’re saying. When I was a child, I had a fever. My hands felt just like two balloons. Now I’ve got that feeling once again. I can’t explain, you would not understand. This is not how I am. I have become comfortably numb.

Any of my readers who have chronic pain may be able to relate to this inarticulate feeling.  Maybe the rest of you a bit?  It’s damned ironic that such a consuming feeling also consumes the words I have so freely for every other thing, and it ends up I can’t describe it accurately to the people who would treat it.

 What makes you inarticulate?

(P.S.  The Pain Doc is fired as of today, and I see the acupuncturist for Medical Qi Gong next week, no needles.)

Day 203. The Secret Powers of Time


So it was Easter yesterday, a really nice one. I sometimes forget how lucky I am that my family members can be mature enough to skip past hurt feelings and slights from divorces and what have you to find themselves en masse in a restaurant celebrating without tension, in fact with a lot of love, at least the way we do it. I knew it would be a good one when my sister-in-law, my brother’s ex (she remains my sister-in-law for good) called to say she wanted to make sure she had a family holiday to have the kids celebrate with us. Then, when my stepmother came in she said, “Oh, let me make sure I get a seat by Carol (my mom).” They are the matriarchs of this ragtag group.

Knowing this camaraderie exists makes me feel so solid, kind of the opposite of anxiety, which one could so easily get when all these people mix, who potentially might not get along at all.

I seated myself at the end of the table, down with the kids and my brother Jacob, who is no longer a kid. He’s the one in the picture with the horn-rimmed glasses (that’s my dad on the other side). Jake and I had a really good time talking. He’s so cool, getting ready to go to go to Prague on a study abroad trip where he will be learning about and visiting the concentration camps there and in Poland, all for a class on the psychology of the Holocaust. Makes me want to go back to college and start all over again. Ah, youth. Ah, school.

Moving on, my reason for writing today has to do with time. Actually, I’m doing a re-blog today. I encountered a video and discussion on the secret powers of time and was struck by so many points. First of all, just the notion of the secret powers of time seems so relevant to the overall theme of my blog. The idea that time has power over everything we do is extremely poignant, for someone who may be counting down the last 200 days of her life.

Not only that, but also in my doctoral research I was strongly interested in the concept of place; the discussion in this reblog offers a compelling argument for the social and moral reasons for the intersection of place and time.

I’m not doing this blog entry justice by hinting around at its contents. Below is a link. If you take ten minutes to watch the whole video, you will not regret it. I want to know what you think, so I will be looking for your comments: this means you ——–, ———, and ————. I could name names, but I won’t. You who never comment but have so much to say, do share your wealth of wisdom.

Just don’t use the excuse that you don’t have time.

The Secret Powers of Time

Day 207. What to Say to Someone Who is Chronically Ill

 What to Say To Someone Who is Chronically or Gravely Ill

A few firsts: People who are sick, particularly the ones who aren’t going to get better, make many of us uncomfortable. Some visitors are squeamish because there’s an unconscious fear that even a genetic illness will be somehow contagious–they just prefer not to be around “sick energy.” It’s okay to get in touch with your own feelings about this sense.

Visitors are uncomfortable as well because those “hang in there because you’ll soon recover” kinds of comments we all have been taught to bring to the sick room simply are not appropriate with someone with a lengthy illness.

 Even if this is someone you have known for a long time, and maybe have had easy conversation in the past, perhaps suddenly you find yourself tongue-tied because she is different. There she lies in the bed, small and afraid. What the hell is there to talk about then? Or the co-worker who you shared an office with suddenly is in a full body cast. He may not be able to return to work and he’s only 45. What to say?

While things may seem different on the surface, remember that the essence of the person you know and love is still the same. Those changes and shakeups are massive for the person who is ill as well, so the biggest favor you can do is to be yourself.  If you are the kind of friend who is serious and always talks politics, then maybe that’s what you’ll want to do.  If you always tell each other jokes, well, then by all means, tell a few jokes (but try to leave ones about sick people out). Let your presence open a window and let a ray of sunshine in the room.

As you do it, know (or say) these things:

  1. There isn’t anything TO SAY. Know that there is nothing you can do. No one expects you to, either. If this really worries you, ask yourself who made you so important? It always cracks me up how a visitor can walk into situations where someone is sick, where he or she intends to help, yet ends up drawing the attention to him or herself by wailing: “Oh, I just don’t know what to say, Frances…..I just don’t know what to do….”.Okay, I have an idea for you, then: Stay home. If you can’t figure out how to act or talk, then stay home. Seriously. Figure out a sentence or something that you can contribute during your visit so you can stop that silly act. It’s not about YOU.There’s a lot of freedom in this hard truth. There is nothing you can do to make the person better. Leave that to the healthcare experts, unless you are one: one thing that becomes extremely tiring is when people second-guess the medical care the sick person is getting. Sometimes he will ask a good friend’s opinion, but otherwise, leave the suggestions alone.
  2. Walk a mile in my shoes. Think about what YOU would want to hear if you were the one with your foot in the air.It’s so hard to know what to say when you can’t feel the pain or make it go away, and you wish you could (you can tell your friend that you wish you could make the pain go away, if you mean it, but only so many times). Instead, imagine yourself in that chair with your foot up on a handful of pillows and feel the electric nerve pain (get way cranky from it, too). Now, what do you want to hear from people? I’ll bet you will think of something nice, straight from your heart.If you really did put yourself in that place, it may have occurred to you that in that cranky space, you don’t want to hear too much of anything. Tell a joke (maybe a short one). Do something you would normally do as friends: watch a movie, eat popcorn, gossip about other friends, play a video game, play blackjack. Whatever. It doesn’t need to be momentous. But when you don’t feel good, too much of anything is exhausting.
  3. Is this a good time?” (better yet, make very sure to schedule your visit). Sick people have trouble sometimes with drop-in visits. Sometimes they have trouble with scheduled ones, if their bodies aren’t cooperating. Make sure to ask if it’s a good time, and offer full forgiveness for rescheduling.
  4. How are you?” This is just fine, as long as the visitor says it in just the same way he would say it to another friend, and not in a worried tone with concerned eyes. Once again, walk a mile in my shoes. How would you like people to get all worried and say, “How are you, old chum?” forty-two times a day? But somebody coming in and saying, “Hey! How are you?” all cheerful might really cheer a person up. It gives the sick person permission either to talk about his illness if he needs to, or wants to, or just to gloss over it, if he don’t feel like it. Take the hint from which way he heads on that one. Got it?
  5. I understand if you don’t feel like talking about being sick.” Seriously. There’s no …but… after the “sick” in that sentence. Throw that sentence in any time the conversation gets personal. Please don’t “pump” for information. Your need to know is not more important than the comfort of the sick person, which is why you came in the first place.
  6. Hey, I brought cards (Yahtzee, Jenga, whatever) with me. Are you up for a game?” I love this. It takes all the pressure from the visitor (whew!) as well as from the sick person at the same time. Of course the sick person can always say, “Sorry, I am not up for that today.” But you still look really cool for having thought ahead and brought something fun to do. If you do end up playing, though, be prepared for play to go slowly, and be understanding about memory errors and the like. Whatever happens, sometimes the comfort of game time allows the sick person to open up and talk about what’s bothering them. Listening is all you can do. Remember, there are no solutions to what is happening.
  7. “I’ve got a coupon for a free car wash in my pocket. Can I take your car for a wash?” (You may have to stretch the truth on the existence of that coupon, but it will be for a good cause.) Getting things done for someone with a chronic illness like Rheumatoid Arthritis, Fibromyalgia, Traumatic Brain InjuryEhlers Danlos Syndrome (or any of the many chronic pain diseases) can mean that their day can last longer. I know that I am good for one event every day. My exhaustion tolerance allows me to handle driving, getting out of the car, dealing with whatever is there, and getting back in the car, one time. Then I’m finished for the day. When I do it twice in a day, I’m usually out for the next day or two. I am sure I speak for many when I explain my situation. So, by doing something that is relatively meaningless to an able-bodied person, it’s almost like creating a whole extra day in the week of the chronically ill person.
  8. Did you get an invitation to the x party? I’m going, and I’ll give you a ride there and back. I’d be happy to leave whenever you want to—in fact, I wasn’t planning to stay long at all.” I learned this from a friend of mine. If it weren’t for him, I wouldn’t get  to parties at all. Getting ready was challenge enough; driving downtown, finding a place to park, etc., etc. were challenges that seemed beyond my abilities. So when my friend, Jarrod called and offered to help, I started being more social. (Other friends followed suit.) Offer to help a friend get somewhere fun.
  9. “What’s your favorite movie/book/food, etc.?” It’s great to bring over some fun thing to eat or do, which you can leave with the person after you’re gone. I still have great movies and books people have brought me when I have been very sick and hospitalized. Take care to find out about food allergies common among the chronically ill. When I was in the hospital for five weeks, people were so kind and found out that I couldn’t have flowers in my room, so they sent Edible Arrangements of fruit that looks like flowers.  Yum!
  10. “This has been lots of fun, but I have got to run.” Huge mistake people make:  thinking sick person equals lonely person. When I come I am obliged to stay all afternooooooon. Oh, please don’t do that to a sick person. Here is the rule: Don’t stay too long. Don’t stay too long. Don’t stay too long. Have one conversation, maybe let the subject change once.  That’s enough, unless the person asks you to stay longer, or if the game is taking longer and she is enjoying herself.  You can ask, “How are you doing?  How is your energy level?”  But speaking for myself, it is very difficult to be honest—or to assess oneself properly.  A chronically ill person who is having a good time can easily miss the signs of exhaustion. After an hour or so, suggest that you can come back and finish the game another day.  You’re a great friend for coming to visit!

Day 210. What NOT to Say to a Chronic Illness Sufferer

I saw a great graphic on a fellow blogger’s site that should probably be required reading for just about everybody. This blogger borrowed it from, run by a cartoonist with multiple chronic illnesses.

I was happy to see a site about illness that wasn’t all about wallowing in misery (for an example, see my above paragraphs). This cartoonist has a number of funny sayings.

In large text, on one, for instance, we see “Coping,” and right afterward, the word in tiny font “sorta.”  Hilarious. I love things that tell the truth like that. Or how about “My disabling chronic condition is more real than your imaginary medical expertise.” Booya!

But I really appreciated “Things NOT to Say to Someone with a Disabling Chronic Condition.”  Maybe you have to be sick to appreciate this, but trust me; it’s funny.

My mother suggested that I preface this explication with a disclaimer.  She wants me to convey the understanding that people say things like this out of love, and because they don’t know what else to say.  Point taken.  Still.  A few of them should be without absolution.

But you don’t look sick.  How can I possibly respond to such an accusation? (Sometimes the idea is couched in “You look great,” dripping in irony, as in, “There is not a thing wrong with you, so why don’t you just cut the crap and deal with life like everyone else?”)  My current favorite is to launch into a discourse on how having a genetic defect in your collagen actually causes you to look young (it does) because the wrinkles mainly stretch out.  (Bummer that you don’t live long enough to laugh at all your elderly looking friends, but still….).

Everybody gets tired.  I get tired….of your stating truisms.

You’re just having a bad day.  Well, hell.  I have bad days a lot more than I care to count.  I particularly enjoy them in the middle of the night, when it feels like my hip joints are breaking, so I am afraid to roll over, yet have to roll over, or I’m afraid they won’t move when I wake up.  Just like you, I’m sure.

It must be nice not going to work.  I have to admit that I like being able to write, read, and paint.  But you have to understand that this is the booby prize for me.  I studied so hard to get my Ph.D. to be a college professor because I loved what I did.  It was my life, and I thought I would do it forever.  It breaks my heart not to do it still….but I dissociate myself from that pain, so that I can carry on and be a happy person.  Writing and reading both are very difficult for me anymore, painfully slow.  I am aware that its a gift that I can do them at all, and that I can learn to paint.  But it’s not nice.  

I wish I had time to take a nap.  Oh really?  I wish I could lie down and not fall asleep.  I wish I did not have perpetual exhaustion.  That’s such a self-centered thing to say to a sick person.

…If you’d get out more.  More than what?  The more I get out, the sicker I get.  The one thing a smart  person with chronic illness learns is her daily capabilities.  I’m good for one main thing daily.  Then it’s a nap, or I am sick all night and for several days beyond.  My last three experiences with pushing my tolerance have landed me in the hospital, which is its own fresh hell.

You’re just getting older.  You are too.  How do you feel?  Do you have all my symptoms?

If you’d get more exercise….  Well, if you read anything I wrote about physical therapy, hopefully you know what I would say to you about this.  Normal people make progress in six weeks of physical therapy. But you aren’t talking to a normal person.

It can’t be that bad.  Um.  For, please.   Are they _____-ing kidding?  Anyone who says this, I wish my disease on.  Did I just say that in public?  Holy smokes.  That is a pretty harsh judgment.  None of you would ever have said that anyway, right?

You’re just depressed.  Oh my.  I just had to erase a line of invective.  I have heard this one from people as illustrious as my esteemed psychiatrist, my mom, and Dr. Mean (of 365 Days fame).  It feels like the ultimate sock in the gut to hear someone say, effectively, “You’re crazy.”  It took an explosion in my leg to convince others that I wasn’t crying wolf.  By the way, I had plenty of symptoms of depression, so they thought they were doing the right thing. And yes, I have been depressed, but that was the result, not the cause of my illness. It seems to me that one keenly logical response to what I have been through might have been to become depressed.  End of story.

There are people worse off than you. I am guilty of harping on this one to myself, or of its ancillary, “It could be worse.”  Truisms.  But I’m okay with them.

You’ll just have to tough it out.  This one makes me see red–in the tradition of the cartoon character bull’s eyes turning red and exploding in a rain of fury.  Maybe it has something to do with its origins for me:  On my first Girl Scout camping trip, I realized I was going to have to unroll my sleeping bag on a dirty floor and sleep with a bunch of biatches in the same cabin. Then I fell into the Chesapeake Bay.

That was the proverbial straw:  I ordered the troop leader call home because I was not staying (can you imagine what a bundle of fun I was as a child?). Guess what my dad said? “You’ll just have to tough it out.” I heard that a few other times when it would’ve meant the world to have help and support instead. So that sentence just means all kinds of fierce madness to me. Why would anyone say it to someone who is sick?

You just need a more positive attitude.  HAH!  Well, hearing this from someone who isn’t sick makes me laugh, certainly!

This too shall pass.  They can’t be serious when they say this.  It is not going to pass, unless they mean my passing on.  Hah!  Now I’m really laughing!

Well, so I thought that was worth a few laughs–maybe enough laughs to get me through sleep tonight and another session of PT tomorrow.  It may be a great one, right (I say, working my positive attitude)?

Day 215. My Secret Pain Self

You may have noticed that I haven’t been posting quite as much of late.  That has been for two concurrent reasons.  I have been in the middle of writing about how fantastic my phsyical therapist is–because he is really great. Then at the same time, I have been in an existential crisis about how miserable I am because I am in pain and horribly fatigued as a result of physical therapy.

Over the weekend, I was so miserable; I had to miss doing two things I really wanted to do, and I barely un-beached myself from the couch long enough to eat another caramel rice-cake with tofutti cream cheese, honey, and cinammon (my absolute favorite GF, Dairy-free treat…but more than three of those a day will put a girl into two size 22 mu-mus, sewn together, mighty quick).

But I digress, as usual.

I went to PT on Monday and told Mike about my misery.  He was very concerned and jumped right into diagnostic mode.  At the same time, though, he reminded me that I had come in happily last week and announced that my shoulders had never been so relaxed in recent memory and that I thought we were making real progress with this body work.  I do have a vague memory of saying that. Here’s the problem:  When I am in pain, I can only think: pain,pain, pain, pain.  When the pain is over, I can’t remember or describe it clearly (without referring to journals).  Seriously.  He asked me to explain what happened over the weekend that was so bad, and I was hard pressed to elaborate.  It’s embarrassing because it sounds like I am making it up.

I think I have a dissociative response to my pain, to some extent.  On a large scale, people who have a dissociative response are really in trouble, because they are disconnecting from themselves or the world; for example, dissociative identity disorder is the present name for what in the past was known as multiple personality disorder. But a more adaptive form of dissociation frequently occurs to people in something as mundane as, say, a car accident; dissociation from the fright of the situation is gives the person a safe place to stash the self, so people often report having watched the accident occur as though they were watching it on TV. Disconnecting from the whole scene to process the deep and difficult feelings, including pain, may be the safest way for some people–like those of us with very intense feelings–to do it.

Maybe I disconnected one tiny bit of myself that day my parents walked me down the hall of my apartment building and I went to the hospital with an exploded leg aneurysm.  Without any doubt I had the sense of standing above the stretcher where I was lying and watching the radiologist tell me, “Yup!  See!  This is an aneurysm right here.”  And I looked at the angiogram with great interest, as though it belonged to that imaginary patient we always see on television. That dissociated piece of myself has undoubtedly remained….well…split.  And it has a tough time articulating much of anything, particularly pain.  I am sure that is why, on the rotten days like today and yesterday, I tend just to fall asleep.  When that dissociated part of me takes over, I’m not available for talking or thinking much, so the porch light’s off.  Nobody’s home.

There’s going to have to be a whole chapter on physical therapy in my book.  It’s complicated.

Day 218. Positive(?) Results


As happens with technology I spent a long time making a great looking PDF that should load when this blog opens up.  Now it won’t do it, even though the YouTube I watched shows that it does so seamlessly….so, I must ask you to click on this link to see the pretty file.  See what you think of the information, and don’t forget to hit the back arrow on your browser to make comments if you have them.

march 26, 2012 COL3A1 POS