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.

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Posted by chronicrants

How ducklings beat dew points

May 9, 2012

It amazes me that there are people in this country who have never heard of the children’s book Make Way for Ducklings.  I feel bad for them.  Of course, if you live in Boston you’ve heard of it.  If you grew up in Boston since it became popular, you probably had it read to you many, many times.  If you live in Boston and have kids, you probably read it to them.

My body is very sensitive to dew points.  (Yes, there’s a connection, just go with me here.)  I checked online this morning, but I already knew the dew point was over 55 degrees.  Sure enough, it was 58.  I could feel it.  I wanted to stay home and avoid the air out there, but at the same time, I just really needed to get out of the house.  I haven’t gone out much the last few days, and I really didn’t want to cancel my plans to meet a friend for lunch.  I put on some waterproof shoes, threw my purse and a book into a waterproof backpack, grabbed an umbrella, and headed out into the cool air in a tank top and jacket.  I quickly took off the jacket.

All around me people were wearing long sleeves and jackets.  I was sweating in my tank top.  I really didn’t feel great, but I pushed through.  My friend and I had a nice lunch (and he even treated… several friends have done that since I’ve had to stop working, which is
very sweet.)  Afterwards, I took the long way back to the T (our subway.)  I needed exercise, so I walked through the Public Garden.  And for a little while, walking through the garden, I was able to forget about feeling lousy.

The swans were returned to the lagoon just a few days ago.  (They spend their winters in a zoo.)  People were playing with their dogs, including an adorable little puppy.  The tulips glistened with raindrops.  And a duck had had babies.  I counted 9 little ducklings swimming around the lagoon, happy as could be.  Tourists and locals alike took pictures of the adorable little ones.  I couldn’t help myself; I pulled out my phone and snapped a bunch of pictures too.  (I took all of the pictures in this post this afternoon.)  It was hard to look at those fuzzy little baby ducks and not feel happy.  Then I walked past the ducklings statues where adorable, happy children were excitedly climbing all over them and taking turns trying to name each duckling.  If possible, they were even cuter than the ducklings

The park was like an oasis.  It was peaceful and happy.  It was the middle of the day and none of us were at work (for various reasons, I’m sure.)  The people were relaxed.  The animals were happy.  The flowers were in bloom.  The trees were full of life.  It was just simply good.

By the time I got home the extra walk had taken its toll.  I barely had the energy to change out of my jeans (they were too hot) before I crashed on the couch.  I spent a few hours just watching tv.  Even holding a book would have taken too much energy.  I was purely exhausted.  My body felt heavy.  My limbs felt leaden.

It helped, though, to have had that break.  I was stuck at home on the couch, but this time I didn’t mind as much.  Those minutes watching the puppies and the ducklings, the kids and the flowers, made all the difference.

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The war on nausea

May 8, 2012

“Are you pregnant?”

She was trying to be helpful.  And I guess it’s an appropriate question when a 30-something woman says that she’s been having unexplained nausea for the past week.  Still, it was a reminder of how incredibly unlikely that is.  There’s a good chance I can’t get pregnant without medical help, but more than that, there the lack of sex recently.  That part really sucks.

Of course, more frustrating than the lack of sex at the  moment was the nausea.  I’m no stranger to GI discomforts.  I’ve been having various symptoms since my teen years.  After around 18 years, it’s still difficult, inconvenient, painful, and upsetting, but it’s certainly not surprising.  The only surprising part is that it’s been different lately.  Over the last few months, since I started the gluten-free diet, it’s been different.  Maybe that’s because of the diet, or maybe it’s a coincidence.  I have no idea.  But this past week has been the worst of all.

It used to be that the more severe nausea and it’s other accompanying symptoms (cramps, bloating, diarrhea) would last for hours.  Over the last few months, there have been times when it’s lasted for a day or two.  This has been especially lousy.  But now, it’s been coming in waves since Thursday.  That’s 5 full days of this bull.  I’ve taken more Pepto than I’d like, but aside from that I just don’t know what else to do.

So I’m fighting this in the only way I know how.  I’m trying to stay calm and relaxed.  I’m watching a lot of tv when I feel lousy.  I’m not pushing myself.  I’m being careful of what I eat.  I’m drinking plenty of water so I don’t dehydrate.  I’m taking Pepto.  And I’m hoping, really hoping, that it goes away soon.  I’d hate to have to fight this at the next level: seeing my PCP so I can get a referral for a gastroenterologist, then waiting for that appointment, then having tests run, then waiting for those test results, then maybe trying a treatment….  That could take months.  Instead, I’ll stick with my old method and try to wait it out.  It may not be the smartest move, but it’s certainly the fastest.

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

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