Keeping one’s compose-sure
Wednesday December 02nd 2009, 10:30 pm
Filed under: Crohn's flare,Wildlife

The squirrels weren’t diving into those pistachios (I’d been curious).  No, no, thanks, plain sunflowerburgers for me and my bro, hold the mayo. Eww, waitress, there’s a hair in my picture!

A quick note–I hope I didn’t offend anyone, including Ms. Reddy, with yesterday’s bit of snarkiness.  A Mississippi Delta blues song that, to me, totally puts women down, sung chirpy and perky and with an Australian accent–it just didn’t work out well for me.

Okay. Moving along!

I did, however, put my friend Neil’s music on last night before going to bed and I sat in front of the speakers, absorbing the notes in just a couple of favorite pieces before turning in, reveling in how good they sounded with my aids adjusted to the new situation.  Planting something positive in my brain for future five a.m. half-awake brainstorm sessions. It worked.

Today I got a little knitting done in a waiting room: I saw my rheumatologist for the first time in exactly a year.  His nurse got me into the exam room and shut the door behind her before she exclaimed, “You’ve lost weight, haven’t you…!?” having no idea and clearly a little afraid to ask.

I hate having to fill people in from scratch and watching them wince.  But at least then she filled the doctor in for me.

He came in and got the details.  He did a fair bit of wincing himself, while I wanted to tell him, it’s okay!  But then, none of it was new news to me, and I deeply appreciated that what I’d gone through meant something to him.  (And her.)  I mattered. It showed in his face.  Thank you, Dr. F. And Nurse M.

I handed him the UCSF results and watched his eyes as he looked it over.  I told him that Dr. R knew steroids didn’t work on me, but there was no convincing the young doctors from Dr. R’s department working my case in his absence, who were sure that if you just threw enough steroids at that Crohn’s, it would tamp it down at last.  200 mg a day. (That is a breathtakingly high dose.  Granted, they were trying to save my colon and my life. Details.)

His eyebrows raised. “Did it?”

“It did absolutely zero.”

He allowed as how being as laid up as I’d been had contributed, too, but he made the diagnosis definite. Osteoporosis.  At 50.  Walk, he said, good that you’ve started walking again, take lots of walks. Some of the loss is irreversible, but some you can do something about.  And build that strength back up.

Another consultation appointment next week before treatment can/might start, the two doctors want to handle it together.  (Hurry, before we lose our current insurance policy Jan 1…   Don’t get me started…)

13 Comments so far
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Ah, on to the endocronologist. The meds are not always fun – remind them of your surgery before they sign you up for the once a week in the morning on an empty stomach …
Cobra a possibility for insurance continuity? Otherwise it is time to start looking for studies.

Comment by Holly 12.03.09 @ 1:31 am

Will you have any insurance? I cannot believe this health care system. If only those able to work or pay the outrageous rates are allowed insurance, we have rationing…but then, I know you know this. I just get so mad.

Comment by Judy 12.03.09 @ 5:51 am

I’m glad you have caregivers who actually care. It’s not everybody’s case, sadly enough. I believe I have mentionned a friend ours before who lives in TN and who’s pain is not being taken seriously.

She has acute fibromyalgia, she’s allergic to just about every perfume and strong smell you can imagine, she is now on oxygen almost 24/7 and her heart is getting weaker – and she’s only a year older than you are. From her reports, it doesn’t sound like the doctors listen to her much. She’s been bounced around a bit. I pray for her daily, of course, for things to get better soon.

On the positive side of life, can we expect a post about when you bring a scarf to that nurse? lol Or are you, rogue of whool, trying out a new pattern idea? 😉

Comment by Suzanne in Mtl 12.03.09 @ 6:29 am

Please tell me you have other insurance (and as good or better) than what you currently have come January 1st. You have enough to worry about without haggling over insurance. I’m confident that God will take good care of you.

Comment by Joansie 12.03.09 @ 6:50 am

It is very important to have a doctor/nurse who pay attention and who care. Time to move on when they don’t. I had one doctor for years before we moved and had decided it was time to find another–he just did not care as I got older. My current doctor does care and pay attention as does the nurse–and he is always looking for a study that will address my problems.

Comment by sherry in idaho 12.03.09 @ 8:03 am

My musical selections are a bit older than yours —
30’s, 40’s, 50’S, plus some classical. When I put my ipod on shuffle, I never quite know what I’m going to get next.

Your mention of osteoporosis, reminded me that I need an appointment for my annual injection.

Fun time –


While driving in Pennsylvania, a family caught up to an Amish  carriage. The owner of the carriage obviously had a sense of humor, because attached to the back of the carriage was a hand printed sign: “Energy efficient vehicle; runs on oats and grass. Caution: Do not step in exhaust.”

Comment by Don Meyer 12.03.09 @ 10:50 am

We will have insurance, but it will be high deductible and care will feel out of reach (or difficult, anyway) while we deal with this year’s fallout. What gets me is how our current plan with a stated out-of-pocket max of not quite 9k could actually come to costing us over 13k: “custom medical service needs” meaning, you got sick. (Note that I did not go out of network.) According to the comparisons we were given in November, the high-deductible plan would save us nearly 5k over next year’s policy for all that, so if we anticipated… And we do know there’s a kink…

And there you go.

Comment by AlisonH 12.03.09 @ 10:52 am

Alison, I read the NYTimes articles about people who have been badly blitzed by their insurance companies and I’m always astounded that it can happen! One working class woman had to pay almost $900 a month in premiums, had a $3000 deductible and that only covered 80% of medical costs–and it’s easy to be bankrupted by 20% of “astronomical.”

I’m sorry you feel forced to get these other conditions checked out because of the pressure from changing insurance, but on the plus side, I’m glad you are getting your hearing and bones checked sooner rather than later.

Comment by LynnM 12.03.09 @ 11:26 am

Pretty blueeeeeee yarn :-}

And hoping all goes smoothly.

My mom also was diagnosed with osteoporosis, despite being a heavy active woman. Seems her body just did not use the vitamin D necessary for calcium uptake.
She is holding her own, but worn out from taking care of Dad :-{

Comment by Diana Troldahl 12.03.09 @ 1:08 pm

FWIW, friend of mine with osteoporosis at about your age got a personal trainer to do weight training with her. They began with very light ones — who knew they made 1 lb dumbbells? (Actually I’d probably find a soup can easier to hold.) She contracted for a specific number of sessions utilizing moves that would strengthen bone, not just general weight training. It got her back to the “osteopenia” category and cost way less than classes or club membership.
This summer I had an infusion of Reclast as part of chemo — it seems to be helping. At least my bone density hasn’t gone down! My mom always said that her dogs paid for her keep by taking her for walks LOL!
Best wishes — this is a difficult problem to solve because each person’s different.
Carol in MA

Comment by Carol Telsey 12.03.09 @ 2:05 pm

I’m glad you keep getting REAL doctors with compassion and knowledge. Too bad they don’t run the insurance side of things.

Comment by Channon 12.03.09 @ 4:18 pm

Thank you for the photo of the black squirrels. They amuse me so.

Not so amusing – health insurance in this country. Or osteoporosis. I’ll be hoping walks, calcium, vitamin D all help.

Comment by twinsetellen 12.03.09 @ 9:57 pm

Love the squirrels!
My dad was put on 100mg of prednisone for his lung issues and it did nothing. He’s been tapering down his dose for a year. Thankfully the doctors are being sympathetic and said they won’t give it one more try, it’s not worth it.
Thank goodness for doctors that consider, you, the human being.

Comment by Alicia 12.04.09 @ 11:10 am

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