A little support goes a very long way

May 21, 2012

I have two kickass (if I do say so myself) blog posts in the works, but I’m going to hold off on those for now and instead ask you to take a look at yesterday’s post if you haven’t yet.  And if you’ve already read it, please write a comment.  I know that everyone can relate in one way or another – I’m guessing most of us have had trouble finding a doctor or other practitioner, or going against the “standard medical advice,” at some point.

I’ve gotten so many great comments in my email, through Twitter, and on this blog, and it’s helping so much.  Some people are offering practical advice for my specific situation and others are offering general support, and they are equally welcome.  So please take a look.  I’ll pick up with other topics again soon, so stay tuned.  Trust me, they really are kickass.

Leave a Comment » | Decisions, Educating, Expectations, Frustration, Healthcare, Isolation, Kindness, Limitations, Medication, Rants, Raves, Support, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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

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.

Leave a Comment » | Expectations, Limitations, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Fixing what I put in my body

April 22, 2012

For many years I had to choke down whatever I made for dinner.  It’s not that I was a bad cook, it’s just that… well ok, I was a bad cook.  I was the pathetic family member who always brought flowers as my contribution to the Thanksgiving meal.  It was not good.

A few years ago I quit a job where I was unhappy and I decided to wait for a while before I looked for work.  I had enough money saved up and I was feeling very burnt out.  It ended up being a fantastic time.  I set a few reasonable goals for myself for my unemployment.  I didn’t want to try to do too many things, so I kept it simple.  One thing was to learn to cook.  I had no grand illusions that I’d become a master chef; I just wanted to make food that I wouldn’t be embarrassed to serve to guests, and most importantly, that I wouldn’t mind eating myself.  And I succeeded!  The meals I make aren’t fancy, but they get the job done.

Since taking a leave of absence last fall, I’ve been doing a lot of reading about food.  I’ve learned more about “real” food versus “imitation” food (like the difference between the bread you make yourself at home and the bread you buy in the grocery store – have you ever read that ingredient list?)  I’ve also learned about various chemicals and other unnatural ingredients in food.  Since then, I’ve been trying to eat more “real” food.  I’ve cut down on chicken and fish (I’d already eliminated red meat, and I never ate pork.)  I switched from canned beans to dry beans.  When I do eat chicken, it’s as antibiotic-free as possible.  I eat a lot more vegetables.  I eat very few processed foods (and I’m trying to get those out of my diet altogether.)  I figure if I’m going to see doctors and take various medications, I should make sure my diet isn’t ruining all my hard work!

Putting those two things together, I’m actually eating pretty decently now!  I can’t imagine how I would have handled my new gluten-free diet if I hadn’t learned to cook.  And I feel better when I eat healthier, “real” foods.  None of this is easy.  I won’t pretend I wouldn’t love to have a frozen dinner occasionally; but then, that’s why I don’t keep that stuff in the house.  I won’t pretend my willpower is that good.  If it was here, I’d eat it.  Still, I’m going to try to focus instead on my big accomplishments: cooking tasty, healthy meals.  When I didn’t feel well the other day, I was able to put together something easy and healthy.  Today I felt decent, so I made the pretty quinoa and bean dish in the picture.  It wasn’t all that hard, but I’m sure I would have messed it up a few years ago.  It took a lot of practice and effort, but today I was able to make this dish for the first time and have a light, healthy, filling meal.

So to all of you who are working on your diets, I offer you my encouragement.  It can be a tough road, but it’s very worthwhile.  If you have a setback, just accept it and then move forward again.  It’s completely worth it.  Now I bring actual dishes to the Thanksgiving meal (and my family is all still incredibly impressed, even now.)  If I can learn to cook, you can too!

~~~~~~~~~~

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

3 Comments | Educating, Limitations, Medication, Raves | Permalink
Posted by chronicrants

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