Gluten-free day 1: The merry-go-round

February 20, 2012

Drugs, physical therapy, hypnosis, more drugs, diet, tai chi, acupuncture, meditation, psychotherapy, herbal medicine, yet more drugs…. I’ve tried a lot of different “treatments” over the years, and so far some have helped a bit, but none has eliminated any of my symptoms.  At best, a couple have lessened the pain, but that’s about it.

Now I’m looking at what could be the holy grail of treatments: a gluten-free diet.  According to books, web sites, doctors, and the nutritionist I met with last week, this could be the key.  Of course, the logical, weary, tired part of me knows that this could be just one more false lead.  Still, I’d like to hold out a little hope.

If the books and experts and such are right, then gluten can triggers an autoimmune response in the body, and eliminating gluten and relieve that response and therefore the symptoms.  In six months I could have less pain, less fatigue, less nausea…. it’s almost too much to hope for!

I’m realistic.  I don’t expected to be “cured” or anything close to it.  But if I could get a little energy back, that would be the best thing I could imagine right now.  So I figure it’s worth a shot.  Even if this doesn’t work, it probably won’t hurt me.  I just had two days of worse-than-usual nausea from adjusting a medication dose.  Sure, going gluten-free is inconvenient, but if it works, I’ll gladly do it for the rest of my life.

So today was day 1 of being gluten-free.  It was what could literally be the first day of the rest of my new life.  I sure hope it is.

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High on life and Prednisone

February 17, 2012

After months of feeling tired, run-down, and sometimes even fatigued, I suddenly had two good days in a row!  I was so excited that maybe something could be changing.  I mean, I wasn’t about to do some huge amount of activity, but I could do a bunch of little things and still feel good.

And then I remembered that I had taken Prednisone these two days.  Damn!

The clinical details aren’t important.  It comes down to this: trying to prevent physical and mental harm, and also trying to avoid another long stint on Prednisone, my doc and I agreed that I’d take the steroid for just a few days, including the taper.  It seems to be helping the pain that it’s supposed to treat, but it’s too soon to be sure of that.  In the meantime, it gave me an energy boost that is both exhilarating and depressing.

It’s a bit depressing to know that this energy burst probably won’t last, but it’s also so wonderful to remember how it feels to not be tired all the time.  True, even with the drugs I’m not exactly about to take a super long walk or go to the gym, but yesterday I saw a doc, read at the library for a couple hours, then hung out with a friend at her place for an hour (and even played with her kid a bit), then came home and was a bit tired, but not really worn down like usual.  And for the last few months, that would have been too much activity for one day and I would have felt horrible the next day, but today I’m actually ok.

It’s always the same old thing: I know I could take Prednisone long term and feel better.  I could go back to work, hang out with friends, date, travel…. get my life back!  But I’d also be slowly poisoning myself, and that’s not ok.

Then again, living like this isn’t ok either.  There’s no good answer.  I’m going to try some dietary changes and maybe that will help.  In the meantime, I’ll be holding onto the precious memory from this week of what it feels like to do things without feeling exhausted.  I can hardly wait to feel that way again…. one day.

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Get your hands off my healthcare: men and birth control

February 16, 2012

Is healthcare a privilege or a right?

I believe that it is a right.  Some politicians disagree.  It is infuriating, but they have more control over the treatments I receive than I do!

This isn’t a problem unique to the U.S., of course.  I’ve been following the twitter rants from U.K. posters, and it looks bad there too.  And let’s not even get started on countries where women are treated like property.  I may cover those another night, but right now, I am thinking about U.S. healthcare (there’s an oxymoron), and who wouldn’t, with what’s happening right now?

The short version is that the president decided to follow the recommendations of a study, and make all contraceptive care free to women. In the U.S., health insurance is generally provided by employers (the unemployed and self-employed have options, but they’re usually lousy.)  So it was decided that all employers, except for churches, would have to pay for contraceptive coverage.  I don’t like the church exemption, but so be it.

The Catholic clergy went nuts.  They didn’t want their religiously affiliated hospitals, universities, etc. to be required to pay for birth control.  The solution?  The president arranged it so that any religiously affiliated organization with a moral objection could opt out, and the insurance companies would be required to provide coverage free of charge.  This works out for everyone, since it still saves the insurance company a lot of money in the long run.

The clergy weren’t happy.  Instead of uniting together to preach the sins of contraception to their parishioners, they decided to unite together against the idea that contraception would be provided to their employees.  Instead of trying to convince people they are right, they are trying to bully women.

And just to add insult to injury, the panel of religious leaders that was gathered consisted of only men.

Twitter has been aflutter, Facebook has been indignant, and I just want to wake up from this nightmare.  The best suggestion I’ve seen so far was on Twitter: That there should be a congressional hearing, made of only female legislators, on insurance coverage of Viagra.  [I apologize to the author that I didn’t note their name.  I would love to give credit to the right person for this wonderful suggestion.]

Now personally I think the real answer is simple:

Make men financially responsible for the fetuses and babies that they father.  (Sperm donors could be excused.)

Let’s say there was a law that the man (whether a one-night stand or something more long term) whose sperm impregnated a woman through intercourse (a simple paternity test would ensure accuracy) would have to pay 50% of her abortion costs or pregnancy costs; 50% of medical costs for both mother and fetus/child; 50% of clothing, food, school supplies, recreational activities, tutoring, and other childhood costs.  Now, with this law in place, would our politicians be having this inane debate?

And let’s leave aside for a minute the idea that contraception is immoral.  Let’s say you believe this.  And let’s ignore the slippery slope this would create (what else could employers object to on moral grounds?  The most expensive parts of coverage?)  What about the many, many women who take birth control pills for other reasons?  Personally, my estrogen levels are too low, so I take 1/2 pill every day to raise those levels.  This does not serve as birth control one bit.  Why shouldn’t this be covered like any other medication?  And what about my friend who had a very dangerous birthing experience with her son?  Her doctors say that she shouldn’t get pregnant again, that it’s too dangerous.  Is it worse for her to use birth control than to possibly get pregnant and need an abortion?  According to these men it is.  But then, that makes sense: a woman’s life just isn’t as important as a man’s, apparently.

Why are we debating the healthcare that men think women should receive?  A small group of religious leaders think that birth control of any type is immoral.  A bunch of politicians want to do anything that makes the president look bad, and since they represent some religious constituents, this suits their purposes just fine.  And the voters?  I just hope the voters make it clear that this is not ok.  Our medical treatment is not up for debate.  Our family planning is not up for debate.

My big regret today?  That I can not tell those jerks what I really think of them in person.

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What to say to illegal HP parkers?

February 15, 2012

Anger.  Disbelief.  More anger.  How can someone be so selfish, so arrogant, so self-absorbed that they think it’s ok to illegally park in a handicapped parking space?

I’ve written about this before and I’m sure one day I’ll write about this again, but it’s an important topic and one that seems to affect me often.  This time, it was last night.  I was in a lot of pain, but I was determined to go out.  For one thing, I hadn’t left the house since I got home at noon the day before.  That’s a long time to be stuck indoors.  Plus, if this followed its usual pattern, there was a good chance things would get much worse soon and I might not be able to leave my apartment for several days.  Besides, it was a singles party on Valentine’s Day!  Where better to enjoy some flirting?

I could barely walk, so taking the T was out of the question.  I knew that walking to the car would be tough, but if I could manage that, then I’d just have to hope I’d get a parking spot near the place.  Hopefully it would be the handicapped spot directly in front.

As I arrived at the place, I saw the car in front of me take the handicapped spot.  Damn!  There were no others, so I circled, and finally parked in a handicapped spot a block away.  It was not a fun walk (actually, limp) to the place, but I made it, and knew I’d just have to be careful to leave early enough that I could make it back to my car again.

After going through all of that, imagine how I felt when I walked past that car and saw that there was no decal on the license plate, and no placard on the visor or on the dashboard!  What gall!  I would have yelled at them, if I had any idea where they were.  I wanted to leave a note on their windshield, but I was too angry and I didn’t have a pen or paper.  They must have seen the sign – anyone who parks in Boston knows to check out the many complicated parking signs, and this one was pretty obvious.  So what then, they assumed it was ok?  That no one would notice?  It took 20 minutes for me to circle around twice, finally park, and then walk back.  And I sure as hell noticed.  How many others would need that space while this jerkwad was squatting there?

There is NO EXCUSE for illegally park in a handicapped parking space.  None.  Zilch.  Zero.  Nada.  It will NEVER be ok!

So back to the part where I didn’t have a pen and paper.  I’m thinking that I should start carrying flyers in my purse and in my car and leaving them on the windshields of offenders.  I’m ready to do it except…. I don’t know what to say.  Crazy, right?  Sure, I’m a talker and a writer, but this is different.  I want to come up with something that gets their attention and makes them actually think, or at least cringe.  I’m thinking I should go for guilt.  Here’s my first draft:

Because you parked here, someone who needs this spot can’t have it.  Be glad you’re healthy enough to not need it!

But I ran this by a friend and she said that it’s too earnest.  So what instead?  Your ideas please!!!  Post a comment here, tweet me (@CIRants) or send a note (msrants at gmail).  What can I say that will simply get someone to think a bit before they do it again?

I promise you, when I get the right line, I will print it on brightly colored paper and stick it on the windshield of every offending car I see.  I can’t wait to get started.


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