Pet Peeve

  You know what? I have a pet peeve about doctors' questionnaires. You know, those interminable sheets of papers that ask for name, DOB, allergies, next of kin, meds you are taking? Well, practically ALL of them ask you to check single, married, divorced or widowed.  

 Now, I am no longer much of an in-your-face-lesbian, I leave that to the younger and more energetic (thank you, those who are, I appreciate your efforts). I have also come to realize that my lesbian lifestyle is so like my neighbors' heterosexual lifestyles that it makes no nevermind (As my father used to say.) That is, I live a boring suburban lifestyle, and would not have it any other way. Except for the marches on Washington, the viewing of the whole Quilt, and the time we had our Ceremony of Commitment and a picture of us kissing ended up in the local paper. But I digress. 

 I believe ALL doctors should have a space for "living with partner" or "in committed relationship" or something that fits the myriad of lifestyles of today. These things are not necessarily a GLBT only issue; many couples remain unmarried, but committed.   It is an issue for me, because Rene and I have encountered such ignorance in the past. Doctors who refused to keep the other up to date because we're not blood kin, hospitals that wouldn't give out information-well before the new regs. And this, despite our wills and power of medical attorney papers -- because they never asked who we were living with, or committed to. And we didn't tell, because it seemed easier that way.

 Now I go into each new doctor struggling to keep the chip on my shoulder from getting in the way. I make my own square to mark, variously putting down my suggestions above, or "other," depending on my mood.  I try to point out the error of their paperwork's ways, politely with a brief explanation. On a Big-Chip-day, I might go into a tirade about how the GLBT community does not get the care they need, because of subtle discrimination like this. Who wants to open up to someone whose paperwork denies my very existence?   Today at the doctor, I was so tired, I forgot to say anything about it at all. Since itis such a pet peeve, I won't let the opportunity pass again!  

Blessings, Margo    

Good News, Bad News

Universtity of Connecticul Medical Center

The good news is, I most likely don't have rheumatoid arthritis, the bad news is that I still have no diagnosis. And the pain, of course.

 I had an appointment with a rheumatlogist today at UConn Health Center. My PMD sent me, saying I should see a specialist, since my sed rate is up. (This measures general inflammation in the body.) Now I actually work for Correctional Managed Health Care which is run out of UCHC, although I work in the local women's prison. (Or used to work, as the case may be), I know my way there, even though CT is one of those small states that has no roads running from one corner up across the to the other, but it takes an hour and a half. 

 By the time I arrived, I was hurting! No good med management today; I don't take break through pain meds when I'm driving. It's a huge hospital, but I eventually found rheumatology, schlepping in with my X-rays and lab work and info from a myriad of doctors. The specialist looked at all my info, my answers from his huge questionnaire I had filled out, and asked, "Why did your doctor send you here? I see no indication that this is rheumatoid in nature."   Please understand, I don't want to have rheumatiod arthritis, I just want to know what is going on in my body. This doctor was nice about it, ordered more bloodwork and X-rays, and sent me on my way, apologizing for not being able to help me. In my experience most doctors take a look at any woman who weighs 300 pounds, and assumes she is not in touch with her body at all. I spent way too long working my way into my body awareness to be put off by such assumptions any more. I am always on guard for any hint of this, and am grateful he did not pull that on me.

 But...as I trudged out to my car at 3pm, I had one of those black hole experiences, when all the good work I've done around  learning to love and listen to my body gets sucked away, and I am left with self-doubts. Maybe it's all in my head, maybe I am exaggerating the pain so I can't go back to work (nevermind that I went back 9 weeks after open heart surgery!), maybe I'm doomed to carry it around with me forever, maybe things will never improve......and more and more and more. I was crying by the time I made the car.  

After I got into the car, I began to feel silly. Here this doctor had told me that in his esteemed opinion I don't have a painful autoimmune disease, and I was absolutely sobbing! Partly, I blame my reaction on the hospital-just being in one drags me down. Also, I am always exhausted, either part of the problem (whatever it is) or because I wake a lot at night due to pain. And I do quite desperately want an answer, a diagnosis, something to point to and say, there-that's what's going on-and I didn't get that today.  

 I may never get it, a grim thought, but I do have to keep going. Giving up just doesn't seem like an option I'm willing to take. I wiped my eyes on a dunkin donut napkin, and set off for the long drive home. When I finally arrived, I took pain meds (oh thank Goddess for pain meds)! and collapsed into my recliner. I was still telling Rene about my day when I dozed off.   Tomorrow, I see my orthopedist-the one I don't like, but I'm not expecting any real help from him, so I may not feel as let down tomorrow. We'll see. Tonight, Roxy, my Chihuahua and I are going to bed.  

 Blessings, Margo    

Sunday's Outing into Quilt Land

 

 

Well, I had a good day out with Peg on Sunday, thanks to good weather and good management of pain meds-always necessary for any good day!  We found April the quilter to be friendly and interesting and owner of the biggest quilting machine I have ever seen.

 

 Now, until Peg moved to CT, I was not privy to the Wonderful World of Quilting. I didn’t know there are quilt shops full of incredible material just waiting to jump out and grab any quilter passing by.  I didn’t know there are quilting clubs and quilting guilds and hundreds upon hundreds of pattern books and tons of techniques and weeklong workshops and whole realms if info on line and - OMG- $14,000 quilting machines as big as a room! Who knew?

 

I cannot sew a stitch right now if I wanted- my right hand is in a carpal tunnel brace, still recovering from nerve damage. Truth is, however, I never have sewn much more than a stitch or two in my whole life. I could blame it on my mother, who does not sew because she only has one arm, but in reality I just don’t like to sew and refused to learn.  Now, I am almost (almost) sorry.

 

We spread the quilt Peg made for me across April’s dining room table, and I was blown away. It is amazing. Each square looks like a window with a wide frame, and in the middle of each window is four small squares, all blues and purples, and roses and pinks and yellows; the colors dance across the quilt like sunbeams across the floor.. mixing and changing and staying the same all at once.

 

We chose a pattern of flowers and vines for April to quilt across the window panes, then Peg and April went into off into Quilters’ language about batting and thread types and differences between sewing machines and paper piecing and rag quilts and much, much more.  I let it flow over me as if was in a foreign land.

 

Before we left, April showed us her quilting machine. It is bigger than my living room, and can be used from either side, and I would describe it if I had the vocabulary and the understanding of how it works. All I know, is Peg left trying to figure out how to add a big enough room onto her little house, and I was contemplating taking up hand quilting- both fantasies!

 

The quilt will be done in about 6 weeks, and I cannot wait!

 

Blessings, Margo

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PS April's machine had two arms and was bigger!

picture from: www.centralsewingcentre.com

Best Friends

 I would like to say that I am feeling better and the pain is gone. I’d like to say that, but it isn’t true. On the other hand, whining about is isn’t going to help in the long run, so today I’m going to write about what I’m going to do tomorrow

 

But first I must digress.

 

Fifty years ago this month I was 4 years old, soon to be 5, living in a suburb of Philadelphia, and I met a new girl from CT, who was much older-almost 5 ½. She had a pudgy face and a sturdy, skinny body and curly black hair and her name was Peggy. She lived down the block and across the street, and while I wasn’t allowed to go that far from home, I ventured beyond my boundaries, and we became Best Friends.

 

Fifty years later, we still are.

 

We have loved and supported each other through four marriages, three divorces, two kids (10 years apart ), my move to CT, her cross country moves to CA and back to PA, through ups and downs and depressions and coming out and abusive family situations and the death of her parents and brother and my mother’s cancer and a whole lot more. At times, we fought like cats and dogs-our mothers, who also became good friends, used to laugh at our terrible tempers, and shake their heads in amazement that we always made up.

 

Our last big fight, many years ago, was a doozy, over where to camp in a National Park. After screaming at each other like the 5 year olds we still carry inside, we stomped off in opposite directions, leaving out poor (first) husbands goggling after us. After discussing how terrible the 1000 mile ride back to CA in a VW camper was going to be, they tentatively chose a site they liked- a first- and set up camp. An hour later, we reappeared together, talking a mile a minute, and could not understand why they were goggling at us again. Our mothers could have told them!

 

But I digress.

 

Last autumn, while I was struggling to regain the use of my right hand and my ability to read, she moved back to her home state CT!  For the first time since childhood, we live close together! She helped enormously during the 6 months I couldn’t drive. Rene is as glad to have her here as I am. We can get together for breakfast out, and talk on the phone free, and have supper together, and play together! It is wonderful.

 

One of the most amazing things about Peg is her ability to create beautiful and whimsical things.  She majored in sculpture at college (as practical as my Religious Studies major), has an incredible eye for color, had a ceramics studio for years, owned an artists’ gallery, and more recently as she began to re-invent herself,took up quilting. Her work is vibrant and colorful and unexpected, and her fabric collection is abundantly overflowing her new quilting room- but in an organized fashion, of course.

 

Early last spring, when I was again suffering a downwards spiral, she announced she was going to make me a quilt. She took me off to a quilting store where she helped me pick out a couple of dozen fabrics in blues and purples and roses and pinks and yellows-all colors I love. Then she showed me quilt pattern books. Oh my! Too many choices. Finally I asked her to narrow it down to several easier ones, and chose one made up of lots of squares with four smaller squares inside- I’ll have to ask her the proper name tomorrow, I’ve forgotten.

 

It is done now and here finally is my point of all this; tomorrow we are going to RI to see a quilter who has a long armed machine big enough to finish the whole thing! I cannot wait! She has a waiting list, but it should be done before Christmas. If I can ever learn how to use our camera, I promise to put up a picture, for it will be one of my most treasured possessions. As is Peg a most treasured friend.

 

Blessings, Margo

 

picture from: www.anygivensaturday.com/ cgi-bin/board/cuteca...

 

A Long, Hard Summer

I am sick and tired of doctors and medical tests. I am going to whine for a while.

 

On  August 7, 2003, I fell hard at work and ended up with a large butterfly fracture of my right humerus (upper arm)-not an easy thing for a very large person to do. On August 19th I had surgery- a planned 2 hour operation that lasted 5 ½ hours-which left me with serious nerve damage, and more pain than I have ever experienced in my whole life, despite years of various surgeries.

 

The day after surgery I started physical therapy. For the next 9 months I never missed a physical therapist appointment, and worked harder than I ever had at anything, determined to regain the use of my hand and arm. It hurt. A lot. Every time. I also found a personal trainer and nutritionist, a somatic internationalist (a body worker of sorts), and I worked. Hard. Every day. In pain. For 9 months.

And to what did I give birth? A cranky, depressed, stressed out, semi-rehabbed bitch, who can ( thank Goddess) move her fingers and arm, but still has multiple health problems-some related to the fall, some perhaps exacerbated by the fall, some just beginning to happen. And I am still in pain. On-narcotic-meds- through-a-Pain-Clinic type pain.

In April, my orthopedist, Dr. K. decided I could go back to work, despite the ongoing problems. Unfortunately, I work at a prison, and have to be 100% to go back. This may never happen. Angry, I said but what about, and listed my ongoingproblems, including the pain, a high sed rate (measures general inflammation), and my fingers turning blue during p.t.  Although I have been pointing these things out for months, he seemed quite surprised. (He’s a good surgeon, but not much of a listener. I don’t like him).

Finally, on May 19th, he took me out of physical therapy, pending some testing. Unfortunately, my workers comp insurance company denied permission-pointing out that I had been okayed to work. Eventually, my attorney got involved, and the tests were scheduled. At the same time, my PMD, Dr. D. also ordered tests, worried about my kidneys, wondering it the sed rate might indicate arthritis, or some other immune problem. Luckily he is a good doctor and a good man.

Between mid June and today, I have had 13 doctors’ appointments, 4 dentist appointments, nerve conduction testing (yes, it hurt a lot, but nothing compared with the post surgery pain), kidney ultrasounds and radioactive dye test, a hand and arm function series, vascular testing and an MRI on my back and neck. And blood work- I have had more blood drawn in 10 weeks than some people have in a lifetime.  I have also seen my therapist weekly, continued at the gym, and with Pete, my body worker. Tuesday I go to UConn Health Center to see a rheumatoidoligist, and the next day I report back to Dr. K.- an appointment I dread.

I have found out some good things. My kidneys are doing well for a diabetic of 30 years. My back has 2 bad discs, but they are not bulging (yet). My blood pressure is down (I’ve lost 65 lbs, with 120 still to go). My screwed up nerve seems to have grown back, even though I now have severe carpal tunnel in my right hand. I found a neurologist who will listen, if I ever need one again. I now have a naturapathic doctor whom I like.(Dr.D. is not too pleased, but oh well…)

It has been a terrible summer, and I am a lot more depressed that I was last spring. And I still hurt-a lot, despite all my hard work, all my healing meditations, my exploration of alternative medicine, my impressive array of pain meds, despite it all, I am still having periods of serious pain. It sucks.

Tomorrow I will get up and read my (many, many) journals, and walk the dog, and go to the dentist-again, contemplate returning to my diet, and keep on keeping on. Tonight I am going to bed.

Margo

 

Slow Changes

Last Monday night, Rene set off fireworks in honor of her 65th birthday. We acquired a few neighbors as an audience, and we all stood together laughing while we oohhed and aahhed over each small burst of sparks and flame as if it were a full blown Grucci Brothers Show. Rene cannot move fast, so as she lit each firework we all cried, run, run, run, and she did run- slowly- laughing in the showers of sparks, basking in the warmth of the attention.

 

When the show was over and the neighbors dispersed, we stood together pushing the spent cardboard cylinders to the side or the road with our feet, promising to pick up in the morning light. Suddenly the words spilled out of my mouth, “If the neighborhood burns down tonight, everybody will blame us.”

 

“You sound just like your mother,” Rene told me. She was right, I did. I am well trained to come out with something negative in the midst of any silliness (as was my mother, of course). I had to swallow twice before I could squeeze out a thank you. I have asked her to point these moments out, because I want to know, but I have to struggle for the grace to accept them.

 

I have thought about this a lot this week, and talked to friends, trying to see why I do this. I have come to a couple of conclusions. One is it’s a control issue. If I end a fun time with a negative comment, I am preparing myself for the fun to end-instead of letting myself enjoy whatever for as long as possible. The other is that I was squashed a lot as a child, and have cut off the playfulness which is part of me for way too long. This both saddens and enrages me. I have missed out on so much!

 

I can see why I glommed on to Rene 11 years ago, even though many people could not see what the attraction was. She is indeed 9 years old in reverse dog years, acting silly, moving through her world in with a childlike wonder, making up for the deficiencies in her own childhood, while dragging me along, sometimes willingly, sometimes full of embarrassment. “Don’t be silly,” whispers the voice of an archetypal negative mother,” Don’t look foolish. What will people think?” That I’m silly? That I’m not an adult? That I’m not prefect?

 

To hell with that. I am a silly, imperfect adult. I want to encourage my own childlikeness, let it free to play and laugh and show off.  It won’t happen overnight, I know, but change is what I’m all about these days no matter how slowly and painfully. Friday night we set fireworks off again, and I tried to savor every moment of it!

 

Blessings, Margo

 

Picture fromwww.welfare-state.org/. ../connections.htm

Drats!

Mood: frustrated.

I had a whole entry done this evening, complete with picture to match, and it disappeared somewhere into cyber space. Some poor person in Central America, or perhaps Central Asia  will suddenly find my entry and wonder who on earth Margo is. Or maybe, some time in the future it will fetch up on some other planet, and the inhabitants will try to figure out the human race from my few paragraphs, god forbid.

Actually, I am so computer illiterate that I cannot even upload pictures into my ftp space with the help of a tutorial! It's lucky I can post at all. I am quite convinced that inside my computer there are a bunch of little men who write on the screen backwards while I type(no problem because I type so slowly). When I am ready to send, they blow the words down one of the many wires I don't understand behind my computer, and as the entry emerges into cyberspace some other little men(lots and lots of them) suck really hard to download my words onto other peoples' computers.It almost sounds obscene.

I still am working on a theory about how graphics emerge and disappear.When this becomes clear to me, I'll let you know!

Margo

artwork  from home19.inet.tele.dk/ rasbolding/WilliamGibson.htm