My hero: mom

May 15, 2012

My mother has been my greatest supporter.  Mother’s Day was a few days ago, but as I wrote then, it was a bit hectic, so I’m writing about my mom now.  Of course, I really don’t need a special day to write about her; she’s amazing all year round.

My symptoms started when I was 12, so my parents were of course a huge part of things.  My mother took me to every medical
appointment, held me when I was scared, and helped me in every way she could.  When I couldn’t hold a knife, she cut my meat for me (and wow did I hate that; what teenager wants their mother cutting their meat?)  She let me yell at her when I was upset and angry.  I’ve taken a lot of emotions out on her over the years.

When all the doctors were saying they couldn’t help me, she pushed for me to see someone new.  When the doctors, and even relatives and friends, said that my symptoms were all in my head, she never believed it.  After a while, even I started to wonder if I was just making it up, but I never saw her doubt that my pain was real.  It was 11 long years before a blood test finally confirmed that the pain wasn’t a figment of my imagination, and she never showed the slightest doubt in all that time.

Even now, as my mother is getting ready to retire and move on to new adventures, she is always thinking of me.  I know that mothers always think of their children, but it’s more than that.  She checks on me, asks about my health, and still lets me lean on her when I am scared, confused, or just need someone to listen.  She advises me and supports me, even when she doesn’t agree with my approach.

My mother is smart, strong, and beautiful both inside and out.  She is the most spectacular person I know.  I am thankful for her every day.

Who supports you?  Who do you admire?  Feel free to brag about them in the comments.

Leave a Comment » | Kindness, Limitations, Pain, Raves, Support, Symptoms, Thoughtfulness, Unpredictable | Permalink
Posted by chronicrants

Emergency adrenaline, non-emergency fatigue

May 13, 2012

The day started like any other.  I shut off my alarm, read in bed, took a pill, read the paper in front of my lightbox, ate breakfast.  Then the phone rang.

Emergencies are never easy, but apparently they’re even harder for me these days.  In addition to the mental and emotional strain, there’s also the physical strain.  The second I heard my mother’s voice, the adrenaline started rushing.  I knew it was her parents.  I called to get a doctor over there immediately, then stopped to think for a moment.  I couldn’t leave the house without taking my pills, so I took my pills.  What next?  Clothes, I should probably get dressed.  For 10 minutes I hardly knew what I was doing, but somehow I got clothes on, called my sister, got water (because I knew I couldn’t afford to get dehydrated today) and ran out the door.  There are other things I would have done if the day had gone as planned, but suddenly I was going to my grandparents’ place 2 hours early and in a panic.

The drive over takes 20-30 minutes, depending on traffic.  Today I got there in 15 minutes.  I hit every light on the green but one.  That never happens.  And, um, I may have driven 80+mph the whole time I was on the highways.  But I was careful.  I signaled, I didn’t cut people off, I paid extra close attention.  My energy was waning before I even got there.

By the time I arrive, they were bandaged up.  There were no broken bones from the falls, just a lot of blood.  Some of the health problems they already had were exacerbated and had to be taken care of.  My parents and I ran around taking care of them, making sure they were ok, cleaning up the blood, calling the necessary relatives.  It was exhausting, but I couldn’t not do it.  I was relieved it wasn’t worse, but I was still worried.  It was physically and emotionally draining, but so what?  I ignored my body as much as I could.

We were all there earlier than we had originally planned for Mother’s Day, so we just stayed.  It was hours of attentiveness, running around, and forced cheerfulness.  We left early in the afternoon so they could rest and we moved on to my mother’s part of Mother’s Day.  Some day for her.  She was amazing though, taking care of her parents and also checking to make sure I was ok.

I held it together all day somehow.  I spent more time sitting in the afternoon than anyone else did, but I made it.  I wanted my own mother to have a good Mother’s Day, at least what was left of it, so I pushed through.  I hadn’t brought food with me, so thanks to the gluten-free diet and the limited options, my diet was lousy.  By mid-afternoon, I was fading fast.  Just driving home was hard, but when I finally arrived, there was an obvious lack of good food options.  I would have gotten take-out, but I couldn’t think of a place to get gluten-free food that wouldn’t be out of the way.  No, I was just too tired.  I cobbled together something meal-like and collapsed in front of the tv.  The adrenaline was long gone.  It took a while before I had enough energy to take out my laptop and do some typing.  Getting off the couch was just too much effort.  In fact, if I hadn’t drunk so much water (and therefore had to get up to go to the bathroom) I probably would have never gone to the computer tonight.

This was one hell of a day and definitely not what I expected.  I’m paying for it now, and I have no doubt I’ll be paying for it tomorrow too, but I’m just so glad that my grandparents are ok.  Life is hard.  Chronic health issues suck.  But having a great family makes it all so much better.  Hopefully there won’t be another emergency any time soon, but at least if there is, I’ll know what my body is capable of.

Leave a Comment » | Expectations, Frustration, Limitations, Rants, Support, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Making medical decisions by coin toss

April 20, 2012

Doctors no longer seem to be all-knowing gods to many of us.

My grandparents always did just what the doctor told them to do.  They trusted their doctor to be honest, knowledgeable, and infallible.

Fast forward many decades and things have changed.  A lot.  For one thing, there are the studies that suggest doctors lie to their patients.  They apparently do this to protect their patients, to save their feelings, but it doesn’t help with the trust thing.  Doctors are now overworked and dealing with lawsuits, insurance, and budget cuts.  In other words, they’re human.  The mystique is gone.  Even more, we have the internet now and can do a lot of our own research.  This helps us to realize that, again, our doctors are human.  They don’t know everything.

Now, I do think that a lot of my doctors are very knowledgeable and I trust them.  That, after all, is why I continue to see them.  However, I still find it difficult when I need to make a decision, and I have no one to help me make it.  I talk to my parents for advice, but I’m getting tired of that; I’m over 30, for crying out loud!  I’m not in a relationship, so I can’t turn there.  And anyway, these all just other laypeople (though my parents are very smart and knowledgeable.)  I can talk to my doctors, of course, but they won’t tell me what to do.  Sometimes they strongly hint at their preferred course.  Sometimes they say it outright.  But many times they don’t know what the right thing to do is.  Damn, they really are human.

I am now facing a small dilemma.  Should I continue my gluten-free diet, with its good effects but also possible negative ones?  Should I quit the diet and see if the negative effects go away?  But then the good effects might go too.  Should I try an over-the-counter med to see if that helps the symptoms?  But what if my body is still adjusting to the new diet?  It could be that I improve from the diet, but if I take the meds, I won’t know which is helping.  Or I can adjust my thyroid med dosage.  I’ve already filled the prescription.  This won’t help the nausea, of course, but it could help the fatigue.  But what if the diet just needs more time to work, and adjusting the thyroid med covers that up?  And I could have negative effects from changing the med dosage, too.  And these are just my top choices – there are even more options to consider!

It would be so easy to have someone tell me what to do.  It would remove this pressure that’s sitting on my shoulders.  But I have to admit, I’m glad when my doctors admit they don’t have the answer; it’s better than pretending otherwise.  Besides, I’m sure I’ll figure it all out eventually.

Does anyone have a coin I can flip?

~~~~~~~~~~

If you can relate to this, please pass it along and share the camaraderie!  Let’s build the community!

2 Comments | Decisions, Educating, Expectations, Frustration, Isolation, Limitations, Medication, Rants, Support, Symptoms | Permalink
Posted by chronicrants

Sometimes “fate” intervenes

April 17, 2012

I wonder sometimes about timing.  Maybe if I had sat in the next subway car over that day I’d have run into a friend.  Maybe if I hadn’t been running late the other night I would have met a new business contact.  I don’t believe in fate.  I don’t think there’s some force controlling things.  But I do think that sometimes timing is everything.

After this weekend’s great walks, I decided to keep up the momentum, at least to some degree.  Ok, I won’t be walking 3 miles every day, but I know I need to do more than what I was doing before the trip.  So today I promised myself I’d take a long-ish walk.  A mile seemed like a reasonable goal.  But it was too hot.  So I ate some ice cream.  Still too hot.  I sat in front of a fan and watched tv for a while.  Yup, still too hot.  I ate dinner.  Ok, it had cooled off enough, time to get off my ass and walk!

I debated washing the dinner dishes, then decided to let them wait.  I don’t usually do that, but I wanted to get out before it got dark.  I could have changed my clothes or checked an email, but instead I rushed to leave so that I would be sure to take the walk.  What if I had delayed leaving for any reason?  On the walk, I slowed down to chat with a nice guy with a cute dog.  I’m a sucker for a cute dog.  What if I hadn’t slowed down?  I finished the big loop and ended up back at my building.  I could have stopped, but I pushed myself to also do the smaller loop that I had already planned to do.  What if I had skipped that?  At the far end of the loop, before turning back towards home, I decided to push myself and do a bit more.  I started walking a longer route home.  What if I had turned back when I planned?  But I didn’t.

And that’s how I turned a corner and saw a blind woman in the road.  It was a relatively quiet one way street, and the car had stopped and was waiting patiently.  The woman was in the middle of the wide street and she turned left, moved her cane, then turned right, moved the cane some more, then turned left again.  A guy across the street was watching this, clearly not sure what to do.  How many of us have been in the same position?  I’m guessing most of us have been on the receiving end of this internal debate: is it better to risk offending someone by offering potentially unwanted help, or to risk letting someone struggle by not offering potentially needed help?

I called out to the woman to ask if she needed help, and she gratefully said yes.  She was on her way to the T and had gotten turned around.  I led her back to the sidewalk.  She asked if I was going to the T and I said no, but that I was walking past it, which was true.  She immediately slipped her hand onto my arm and asked if I’d lead her there.  Of course I was glad to.  We joked and laughed about how we hold ourselves to high standards, trying to be perfect despite our disabilities.  She, of course, had no idea what mine were, but that didn’t matter.  We had a nice chat, and then I left her off at the door to the train station and continued on home.

There are dozens of ways we might have missed each other.  I don’t believe in fate, but I am so glad the timing worked out so that I could help someone else.  It is so easy to become absorbed in our own health issues, and it meant a lot to me that I was able to get outside of that to help a stranger.  I am sure she would have eventually made it to the station without my help, but I hope that I made her night a little better.

~~~~~~~~~~

If you can relate to this, please pass it along and share the camaraderie!  Let’s build a community!

Leave a Comment » | Educating, Expectations, Kindness, Raves, Support, Thoughtfulness | Permalink
Posted by chronicrants

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