The best kind of pain

February 7, 2012

***Warning: I get a bit sappy when I talk about my friends’ kids.  But hey, that’s an auntie’s prerogative, right?

When I was a kid, every winter my family would go cross country skiing once or twice.  We built snowmen and went sledding throughout the long New England winter, but because we went skiing so rarely, it was a real treat.

Every trip was different, but they all had the same excitement: the drive out there, getting fitted for skis and poles and boots, relearning everything we’d forgotten since the last time, breaking in the middle for hot chocolate, falling over in the snow.  It was a magical time.

Until the next morning.

Going only once or twice each winter meant that my skiing muscles never got built up.  Every morning after a ski trip, I’d wake up sore as hell, and all day long it would only get worse.  The first time it happened, I thought something was wrong with me.  After that, I knew what it was, but it was still a tough couple of days.

The other day I woke up with that same feeling.  It was glorious.

A close friend had a baby recently and I drove across the state to visit them.  Before this I knew that the Plaquenil I started last summer
was working, but only because I could climb up more stairs before my knees gave out.  This day really proved it.  First, I held the baby.  A lot.  Much longer than I could with her first two kids.  There’s nothing like holding a sleeping newborn; they’re so incredibly peaceful.  My wrists and hands were sore afterwards, but I could tell the pain wouldn’t last long (thankfully I was right about that.)  Then I was playing with the older kids on the floor, and before I knew it, they were both climbing on my back at the same time!  I never thought I’d be able to do something like that!  It was fantastic.  I’ve always enjoyed being fun auntie Rants, but it was in a calmer way – coloring and building blocks and shaping clay and reading.  This was the first time in their lives that we’d been able to roughhouse together.  Did I mention it was fantastic?  Sure, I said no to them when one wanted to sit on my back and have me crawl around; I know my limits.  But having them climb on me while I wiggled around on the floor (on purpose – they loved it) was really…. am I overusing “fantastic” yet?  And what amazed me was that I really didn’t feel any pain.

Until the next morning.

Actually, though, I wasn’t really in pain the next morning, just sore.  Very sore.  Muscles hurt that I didn’t know I had.  After all, I had barely used them in many years, so I really couldn’t blame them for acting out at me.  It was a rough day, and the next day was even worse.  And I loved it!  I’d do it again in an instant.  Playing with the kids was a dream come true, but the soreness was good too.  Have you ever gone to the gym, done some great new exercise, then ached the next day?  You know how good it feels to know you’re building up your muscles?  That’s what this was!  Only I never thought I’d ever be able to work these muscles again.  I thought that for the rest of my life, they’d remain barely used.

Ok, this isn’t perfect.  My energy still sucks and I felt exhausted for days after that trip.  But this shows there’s hope.  For more than nine years, I was in pain all the time.  I mean all the time.  24/7.  It got to the point where I couldn’t remember what it felt like to not be in pain.  Now I have pain every day, but only for parts of the day, and to me, that’s magical.  It gives me hope that my energy could rebound too.

And yes, I’m realistic.  One day the pain will get worse in all the places where it’s now a bit better.  That could be in a year, or 10 years, or 50 years (longevity runs in my family, even with the autoimmune crap), but I’m sure it’ll return.  For now, I’m just living it up.  And for me, that means getting on the floor and letting adorable kids climb all over me.  And if I’m sore the next day, remembering their laughter makes it all worth it.  It’s the best pain I’ve ever felt.

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Oh social life, wherefore art thou?*

February 5, 2012

I should be at a Super Bowl party right now.  Should be.  But I’m not.  Damn body.

Every year my friends host a party.  Most years I go.  Ok, to be honest, I don’t actually watch the game, but I do love the party.  Good company, good food, and sometimes I watch the commercials.  I missed it last year because of car problems, but I was determined to go this year.  All weekend I was thinking, yes, my body has been through a lot in the last few days, but I’ll still be able to make it, right?  WRONG!

Friday was the long drive across the state, playing with kids, then driving back (details in another post.)  Friday night I slept better than I have in ages.  Saturday was taking care of an injured family member, but only for a few hours, because I knew I needed rest.  Today was rest rest rest all day.  But I woke up exhausted, felt sleepy all day, then passed out in the afternoon.  I woke up on the couch right around the time that I was supposed to be leaving for the party.  Oops!  In that moment I knew I wasn’t going.

So here I am, sitting at home, hearing the occasional shouts from neighboring apartments, and wondering where my social life went.  Sure, I hadn’t been going out every night before, but over the last several months, as I’ve felt worse and worse, my social life has edged towards zero.  A friend asked me out to dinner yesterday and it suddenly hit me that it’s been a loooong time since I’ve gone out to dinner with anyone.  Probably more than a month.  And even yesterday I didn’t feel up to it.  The last non-family party I went to was New Year’s Eve, and before that…. I really don’t remember.

Tonight was supposed to be easy.  A simple drive, a laid-back atmosphere, friends and acquaintances who I like and who I haven’t seen in a long time.  Tonight was going to be a chance to get out an socialize.  Tonight was going to be fun.  I’m starting to forget what fun is like.  Tonight was going to be a chance to get out and be around people.

And then it wasn’t.

Here’s hoping that next year is better.  That next year I’ll be at the party.  That next year I’ll have a social life.  Let’s hope.

*Note: Yes, the title is a takeoff on the famous line from William Shakespeare’s Romeo and Juliet.  It’s not as poetic as his version, but then, I’m no Shakespeare.

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2 Comments | Expectations, Frustration, Isolation, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Komen vs. PP: Let’s focus on what matters

February 2, 2012

My personal life is so overwhelming right now that I can’t even write anything personal.  Maybe that’ll resume in a day or two, but for now, there’s always politics.

If you’ve paid any attention to the news recently, or to health-related Twitter feeds, you must know about the big Susan G. Komen for the Cure debacle.  In a nutshell, it’s pulled funding from Planned Parenthood.  A Komen board member said that this was due to concern over a Republican congressperson’s investigation of Planned Parenthood.  We all know that the Republican party has said that public funds to Planned Parenthood should be pulled because Planned Parenthood provides abortions.  The abortions are a tiny tiny part of what Planned Parenthood does.  They are not paid for with public funds.  They are legal.  They in no way hinder the breast cancer screenings that the organization provides.  I assume those screenings are the reason Komen gave them money to begin with.  So what’s going on?

Having worked in nonprofits for many years, I believe that most people do not do sufficient research before donating to an organization.  There are many sites that can help you research a nonprofit (http://www2.guidestar.org/ and http://www.irs.gov/charities/article/0,,id=249767,00.html are two of them) and they are generally underused.  Still, where should someone go to find out if funds will be withheld because of “moral” views or “political pressure”?  I wish I knew.

I want cures for the illnesses I suffer from.  I want cures for the diseases my loved ones suffer from.  I do not want political games to slow down or stop research on or prevention of those illnesses.  

Planned Parenthood helps women detect breast cancer (and other forms of cancer, as well as other problems) early, so that they can receive immediate treatment.  I  happen to have very strong views on abortion, but those are irrelevant here.  If the funds that Komen provides are used only for breast cancer screenings (and Komen can mostly likely make that a requirement of the funding) then why on earth should the funds be withdrawn?

Interestingly, this has made people (including non-media people) more interested in Komen’s practices, and they are noticing where their money goes (what percentage to fundraising, what percentage to research, etc.)  Like I said, I believe that everyone should do this kind of research before contributing to nonprofits.  So maybe something good has come of all of this.

Still, I simply do not understand why an organization that does so much good must constantly defend itself, simply because a small part of what it does is provide legal, safe procedures for women who need them.  For everyone looking to stop funding to Planned Parenthood I must ask: are you planning to fund checkups, cancer screenings, counseling, and everything else they do yourself?  No?  Then back off.

Let’s focus on what really matters.  Let’s focus on prevention and cures.

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2 Comments | Educating, Expectations, Frustration, Healthcare, Insensitive, Medication, Politics, Rants | Permalink
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Communicate, people!

February 1, 2012

Many years back I created a family medical history chart.  I sent a spreadsheet around to the family listing all known family illnesses, and asked each person to fill it in, adding additional illnesses as needed.  I filled it out for my grandparents.

As it turns out, this was a brilliant idea!  Everyone loved it!  They all filled it out right away.  I compiled everything, then split it, making one spreadsheet for my mother’s side of the family and a separate one for my father’s side of the family.  I sent the appropriate spreadsheet to the appropriate people, and suddenly we all had a comprehensive family medical history!  I still bring this with me to medical appointments.  I recommend that everyone do this.

The problem is that it’s very outdated.  I tried to update it years ago, and no one was interested.  Of course, this only works if people update it.

I guess it makes sense, then, that I didn’t know about my aunt’s hypothyroid.  I got tested for hypothyroid many, many times over many, many years.  Then they changed the “normal” standards, and suddenly the same test results that were considered “normal” were now considered hypothyroid!  I started taking meds, adjusting them a bunch of times over the years, and figured this was the least of my problems.  (I was very wrong about that, but that’s a subject for another post.)  Last year my doctor decided to test my thyroid antibodies for the first time.  It amazes me that no one thought to do that before.  I got diagnosed as having autoimmune illnesses years before the hypothyroid diagnosis.  Why didn’t anyone think to test that?  With the “normal” antibody range maxing out at 35, and my results coming in at over 300, it was clear that I had an autoimmune issue with my thyroid.  Shocking.

I spoke to my doctor’s office today, getting the latest results.  Suddenly it hit me that this has a genetic aspect to it, so I emailed my immediate family and my cousins.  And what happened?  A cousin wrote back that her mother, my aunt, was diagnosed with a hypothyroid years ago!  WTF?

Now, I’ll admit, I wasn’t fantastic about communicating my antibody issues, but at least that only happened several months ago.  With my aunt we’re talking years.  For something with a genetic component.  It took 10 years for my first autoimmune issue to be diagnosed.  Now, 9 years after that, I have 7 diagnoses.  So far.  Many relatives were diagnosed after me, and theirs were much easier because they had my history to reference (I’m just about the oldest in my generation, and mine started at a young age, even before my grandmother’s RA.)  Wouldn’t they think that this information may have helped me get diagnosed?  Wouldn’t they think that maybe, just maybe, this is information worth sharing?  What else don’t I know?

ARGH!!!!!!!!!!!

I try to be patient.  I really do.  But when family members don’t share basic information….?!?  Time to revive and update that chart.  And this time I’ll hound people until they get it done.  It’s too important to ignore.  We all need to talk about these things!

 

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