Stairway success

June 4, 2012

As I carefully avoid gluten and dutifully do my physical therapy exercises, not to mention generally taking care of my body, I’m trying to be aware of the small improvements.  I’d love to wake up tomorrow and feel fantastic, but I know that won’t happen, so I want to be realistic about small wins.

Today’s small win is against my staircase.  I live on the third floor of my apartment building.  I only considered a third floor apartment because there was an elevator in the building.  Of course, when the elevator breaks down (which happens more than you’d think) then I have to take the stairs.

My knees started to bother me on stairs and hills many years ago, probably around 1999.  Earlier that year I’d climbed the stairs up La Sagrada Familia in Barcelona – I later discovered it was about 450 stairs.  By the next year, a single flight was incredibly painful.  As I’ve been strengthening my muscles, I’ve hoped to be able to climb more stairs without feeling like my knees are filled with jelly.

The goal was never to climb 450 stairs again.  I mean, I wouldn’t complain if I had that option, but again, I’m trying to be realistic.  I figured that if I could climb the stairs to my third floor without any pain, that would be amazing.  I have been working on this for a while now.  I won’t say that it’s completely painless, and I don’t even try it when I’m carrying anything heavy, but when I reach my floor, I can actually walk down the hall without limping, and within a few minutes the aches are gone!  Even better, I can get to the third floor without that jelly feeling!  And for the first time in the 6 years that I’ve lived here, I can now climb all the way from the 1st floor to the 3rd without having to stop and rest on the way up!!

I’m not running up 5 flights of stairs, I’m not looking for stairs instead of elevators everyplace I go, and I’m not choosing the stairs when I’m carrying extra weight, but for me, this is a WIN!


6 consecutive days of physical therapy!

June 3, 2012

I’ll admit there were times I just “didn’t feel like” doing my exercises.  And yes, there were days when I legitimately felt like shit.  And sure, there were days when I felt lousy and probably could have pushed myself to do PT, but moving really was tough.  Of course, there were also the days that I “meant” to do it, but somehow never got around to it.

And then there’s today.

When I started going to physical therapy a few months ago, I decided to make more of an effort this time around.  I printed out a calendar from the web, and I bought stickers.  Just like when I was a kid, I got a sticker every time I did something.  In this case the reward isn’t some toy, it’s my health.  It’s easy to forget that, of course, because the reward isn’t immediate, but the truth is, I’m starting to feel the PT working.

I’ve been pretty good about doing the exercises at home on the days I feel well.  Sure, I’ve skipped a day here or there, but doesn’t everyone?  But yesterday I looked at the calendar week by week, and noticed that I mostly do the exercises 2 or 3 times a week, sometimes 4, and that just isn’t good enough!  I also noticed that I was already doing really well, so that pushed me to keep going.

And then there was today.

Today is the kind of day when I would normally have skipped PT.  I left the house a bit earlier than usual.  I had a busy afternoon.  I was busy and productive at home.  I forgot about the exercises.  Then I was having dinner and I had to digest.  But I pushed through, and at 9pm, I did it!  I broke my own record and did PT exercises for the 6th day in a row!

Now the pressure’s on.

I’m writing this in a public place so that maybe I’ll feel even more motivation to keep going.  I’ll give myself days off when I legitimately don’t feel up to PT, but otherwise, I’m pushing through.  Wouldn’t it be amazing if I could do PT tomorrow and complete and entire week?!

So not only is my posture getting better and my muscles getting stronger, but I’m feeling damn proud of myself, too.  Woo hoo!


The best suggestion I ever got

June 2, 2012

“Have you tried magnetic therapy?”  “My friend had luck with acupuncture.”  “I perform reiki and it could help you.”  “My sister’s boyfriend’s cousin’s roommate’s father’s boss has the best doctor.”

Ok, the last one I made up, but let’s face it, we’ve all heard something like that, right?  Friends, family, acquaintances, coworkers, and absolute strangers have all felt the need to give me advice on how to “fix” my health problems.  Everyone has an idea and they feel the strong need to share it.  I guess it hasn’t occurred to them that after 20 years, I’ve heard it all.  It also doesn’t occur to them that what they’re suggesting might be completely ridiculous.

Tonight I was at a gathering with people I didn’t know.  We had just met for the first time, but in talking about jobs, I mentioned that I wasn’t working due to health stuff.  Later, when I was speaking one-on-one with someone, I referred again to my health problems.  He asked if I’d heard of PatientsLikeMe.  This was awesome!  Let me explain….

First, PatientsLikeMe is actually useful.  If I hadn’t heard of it I might have blown off the suggestion only because I get so many.  But I knew of this site already so I knew how great they are.  Second, he made it clear that he personally knew about this site, and he wasn’t suggesting it just because he “heard” it was good.  Third, he was suggesting a way to find community.  He was not suggesting a treatment.  And finally, he was clearly trying to offer something that he honestly felt was useful because he cared.  I think that many people do want to help, but many more want to feel useful and knowledgeable and giving advice accomplishes this.  This guy wasn’t looking to feel good about himself by helping; he just wanted to help.

So for all of these reasons, this guy rocks.  I told him how awesome that was, and explained the kind of “advice” I usually get and he was appalled.  I just hope he can teach others how to be more helpful by not trying so hard to help.

Now I just need to come up with a good way to repel intrusive strangers……


All signs point to starting over

May 29, 2012

***Check out the Patients for a Moment blog carnival hosted by Chronic Babe***

Sometimes all signs point the same way.  This seems to be one of those times, so I better pay attention.

The symptoms started when I was 12.  I got the IBS diagnosis at 22 and the PCOS diagnosis at 25.  The “big one” was in between at 23: undifferentiated connective tissue disease.  This doesn’t mean a whole lot, but vague as it is, it’s more than I had before.  Hypothyroid came around age 26 and Hashimoto’s was around age 31.  There were others in there too, but they were smaller.  Then again, I thought most of these were pretty small, too.  After all, hypothyroid didn’t mean anything more than taking a pill every morning.  And according to my doctor, Hashimoto’s had the same treatment as hypothyroid.  PCOS also didn’t mean much until I was ready to have kids, which hasn’t happened yet.  And IBS is a nice name and all, but the only treatment is diet, and I was really left on my own to figure that out, aside from the somewhat-useful-in-a-very-limited-way pamphlet I got from the doctor.  No, the big one was definitely the connective tissue diagnosis.

I had symptoms for 11 years before I got any sort of autoimmune diagnosis, so I’d had plenty of time to come to terms with my symptoms and their permanence in my life.  I had a good handle on things.  So why did my world turn upside down again with that diagnosis?  Suddenly I was going through the 5 stages of grief all over again.  It was like I had to start over.

Last year my symptoms got much worse than they had been before and I finally had to leave my job.  That short absence has turned into a permanent one (at least from that job) and that pushed me to start researching my illnesses all over again.  I want to get back to work at some point.  I want to date.  I want to actually live my life!  So I found web sites and books and online groups.  I discovered some new things I hadn’t known about, and suddenly I was starting over with everything.

For the last month my mind has been whirling with the possibilities.  It has been overwhelming and frustrating, but it’s also provided some hope for the first time in many years.  I may be worse now than I was before, but it seems possible that I could improve, and feel better than I ever have in my adult life.  I’m scared to think that way, but it seems possible.

Every week WEGO Health hosts a tweetchat for health activists (Tuesdays 3pm EST, #HAChat – please join!)  Among other things, today we discussed the effects of having a diagnosis.  That really got me thinking about how I feel like I have a new diagnosis now.  In truth I have the same diagnoses as before, but I’ve just realized that Hashimoto’s and hypothyroid should be treated differently and that my PCOS and IBS could be treated differently too!  It’s as if I was just diagnosed.  I’m considering treatments that I’d never heard of until a few months ago.

As my wheels were still turning this afternoon, I found out about the Patients for a Moment blog carnival being hosted by ChronicBabe this week.  The topic?  “Starting fresh.”  Perfect, right?  Here’s what they want:

Is there something you’re doing that’s new, or different from how you’ve done it before? Are you starting something over that you previously didn’t succeed at doing? Are you giving a new doctor, medication, lifestyle behavior or workout regimen a shot? Fill us in on your experience!

Like I said, all the signs were pointing the same way.  So I gave in.  I took the time to really think about how strange it is to be going through all of this, especially so many years after what I had thought was my “definitive” diagnosis.  This just goes to prove that the learning never ends.  I am reading constantly, following blogs and tweetchats, trying my best to figure out which is the best approach to take.  I am talking to alternative practitioners to learn about their different approaches.  [I’ve been amazed at how willing they are to spend 1/2 hour on the phone telling me about what they do – the traditional doctors I contact don’t do this.]  I am on a gluten-free diet and looking into more dietary changes.  I am researching supplements and different medications.  I am adjusting my expectations.  I am asking for ideas from friends and family.  For the first time in many years, I can be proactive again.  In short, I am acting like a newly-diagnosed patient almost a decade after my first diagnosis and two decades after the onset of symptoms, and I love it.