Physical therapy: 8 out of 9!

April 1, 2012

There’s really nothing wrong with my physical therapy exercises.  They’re a bit inconvenient.  None are painful.  Some are boring.  Most involve effort I just don’t want to expend.  Still, even when I have nothing else pressing to do, for some reason I try to avoid PT.  I’m sure there’s some great psychological reason for this, but I’ll ignore it for now.  The point is, I suck at doing my exercises.

I stopped doing my exercises a few months ago when I was feeling especially fatigued.  I know this was legitimate, but it still meant that I suffered a backslide and I now have to make up for it.  I am attending PT again, and am supposed to do my exercises at home.  I decided that for me, the best motivation was to track it.  I might feel a little bad if I thought I’d missed a day or two recently, but I’d feel really guilty if I knew I’d missed 2 days out of the last 4.  So I went online and printed out a little calendar.  I bought some start stickers and I give myself a star every day that I do my exercises.  This is working great!  I felt much more guilt today than I normally would, since I knew I’d missed Friday, so I did the exercises at 9pm.  Normally I’d have decided it was too late to bother by that point, but I did them!

I should have started tracking a few weeks ago, but better late than never, right?  So in the last 9 days of tracking, I’ve done my exercises 8 times!  2 of those times were at the physical therapist’s office with her, but still, I did the exercises 8 out of 9 days!!

This may not seem huge to some people, but I’m guessing many others understand.  I’m going to do my best to keep it up, because I know these exercises really will help.  It’s time to aim for the stars!

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If you can relate to this, please pass it along and share the camaraderie!  Thanks!

2 Comments | Expectations, Limitations, Milestones, Raves, Symptoms | Permalink
Posted by chronicrants

Rheumatology rock star

March 24, 2012

My rheumatologist is fantastic!  She sets the gold standard for medical care.  She went above and beyond yesterday!

I am very picky about doctors.  Actually, that’s a huge understatement.  I’ve received a lot of poor care over the years.  There was the pediatric surgeon with no compassion.  There was the internist who lied and told me a certain test didn’t exist even though it did.  There were the several who ignored my theories of what was happening with my body (and it turns out I was right.)  There were the many who simply wouldn’t admit when they didn’t have an answer.  That’s one of my biggest criteria: every doctor I see must be willing to admit ignorance when it’s warranted.  My standards are high, and I won’t accept inferior treatment any more.

At my first appointment with this rheumatologist, I told her early on that I understood that my condition didn’t have a particular name and that I was ok with that.  She looked downright relieved, then told me how it can take patients many years to accept that.  She was glad we could move on and focus on treatments.  I knew then that I liked her.  She understood.

Over the last several years she has been helpful and caring.  She only works three days a week, but if I leave a message with an urgent situation, she’ll call me back on her days off.  She’ll call me at 7pm if she’s been with patients all day.  I can always trust that she’ll call.  When I need to be seen and her schedule is booked, she always finds a way to squeeze me in.  She tells me when she doesn’t know what to do.  She’ll ask what I want to do.  She listens to my thoughts and theories and takes me seriously.  She trusts my assessment of my body, but conducts her own assessment as well.  I can actually trust her.  That’s not something I do easily.  And, of course, she’s good at what she does.  She’s knowledgeable.  She’s worked with other patients with my unique rheumatological situation.  If I ask her about something she’s not completely familiar with, she researches it and gets back to me.

But this week she really outdid herself.  I was blown away!  I’ve been on edge about signing up for disability insurance.  To make matters worse, there will be a big gap between short term and long term disability.  This is mostly because I got the paperwork for the insurance application on the first day of my rheumatologist’s 10 day vacation.  She’d told me she was going on vacation, but I didn’t realize what the timing of the paperwork would be.  Well, there was nothing I could do.  I sent her the forms, along with a note about the timing, asking that she not wait until our next appointment to fill it out.  I know how hectic things are after a vacation, but she’s been so responsive that I hoped she might do it within a week of getting back.  Boy was I wrong!

She got back from vacation on Thursday.  Early Friday morning she responded to my email and asked if she could call me later in the day to discuss the forms.  She called at the exact time she had said and then filled out the forms while we were on the phone!  She told me what she was writing and asked me questions about the various sections.  She told me she wanted to get it done right away because of my timing issue, then she apologized for not calling the day before!  She said she had to spend that first day catching up from vacation, which of course I understood!  Plus, we had a temperature and humidity spike last week, so I’m guessing that many of her patients were calling.  This paperwork is important to me, and I’m nervous about it, but I never expected her to do it on her second day back!  Her forms will get to the insurance company before mine!  (She faxed hers and I have to mail mine.)

I’m not thrilled with my endocrinologist right now, and I need a new gastroenterologist, and I might need to see a neurologist, and I’m not crazy about my PCP, but thank goodness that the one doctor I rely on the most, the one who provides so much of my care, is so fantastic!  I wish I could find more like her.  I wish we all could!

Good luck to you all in your search for good doctors.  Let’s hope there are plenty more like this one.  We all deserve them.

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If you can relate to this, please pass it along and share the camaraderie!  Thanks!

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Posted by chronicrants

Some chronic illness benefits of sex

March 19, 2012

Please excuse my absence.  First I was busy feeling sick, then I was busy having sex.  Guess which was better?

Sex is a very controversial topic in some parts of our culture.  At the moment, some politicians are saying that women should only have sex for purposes of procreation.  They say that women who use birth control are sluts and that women who have abortions are murderers.  Since I plan to never have children, I suppose that means that according to them I should not have sex until after menopause.  If you don’t know what I’m talking about, pick up just about any American newspaper.  The stories are hard to miss.

Luckily I don’t believe in any of that.  I’m a fan of sex, and I use birth control.  If that bothers you, you should stop reading now.

I have heard, read, and been told that sex can help many of my symptoms.*  More than that, I’ve experienced it.  A few years back I
was seeing someone, and I would sometimes call him up, tell him I felt lousy, and say I wanted to come over for sex.  It was fantastic.  And it worked.  Sex is a great form of exercise.  Muscles are used in ways that we might not normally use them.  It’s a great cardio workout.  It’s a stress reliever.  It can lead to better sleep.  And who doesn’t love a rush of endorphins?*

Now, this doesn’t work for everyone.  And of course there are limitations.  We must be careful of STDs and pregnancy (or just STDs, if you’re having same sex sex, one partner is a woman past menopause, you’re having oral sex, you’re having anal sex, at least one partner is infertile, etc.)  It’s always important to be with someone you trust, but I think that’s the case even more so when health issues are involved.  If pain is a problem, then it’s important to not exacerbate the pain.  And of course it’s crucial to listen to our bodies and to stop or make adjustments if necessary so that we don’t injure ourselves or cause other problems.

Sex is a rarity for me these days.  I do not enter into sexual relationships casually, and so I sometimes go for many months without sex.  In fact, it had been so long that I had forgotten just how helpful sex can be for me.  Of course there are the obvious reasons why I enjoy sex.  It’s just that there are also additional benefits.  For me, the timing was especially fortuitous since I was having a bad flare last week.  In fact, I didn’t think I would feel well enough to have sex.  Thankfully, I just barely felt up to it, and my partner understands my health conditions well and was willing to stop at any point, do most of the work, and be careful of my painful joints.  Having a partner like that makes all the difference.

Now I’m well rested (I slept great after each time!), less depressed, and in less pain.  I can feel that I got a great workout.  And as an additional benefit, I feel great about my body.  (Personally, I always feel especially sexy after sex.)

I’m not about to go off my meds or give up my new diet, but it’s great to know that I have the option of a fun additional treatment: SEX!

*I am not a doctor or a medical professional.  I am writing about my own experiences and about those of people I know or have read about.  If you think that this may help you, please seek advice from a medical professional.

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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.

If you can relate to this, it would be so awesome if you’d click on one of the social media icons below to share this.  Thanks!

Leave a Comment » | Decisions, Expectations, Frustration, Healthcare, Limitations, Medication, Milestones, Pain, Raves, Unpredictable | Permalink
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