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!

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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

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?

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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

Baby steps: learning to stand, walk, and sit at age 32

March 26, 2012

It’s a natural progression: babies learn to roll over, then to crawl, then to stand, then to walk.  Easy, right?  Apparently not.

A couple years ago I was in physical therapy, having knotted muscles worked on, when my physical therapist decided I was ready for the next step: learning to stand.  Now, I’d been standing for years.  Sure, I never crawled, but I did go through all of those other stages, and I knew how to stand.  Yeah, it was painful to stand for more than a minute or so, but it’s not like I didn’t know how to do it.  Well, apparently I didn’t.

It turns out I’d been standing wrong my entire life!  I was putting my weight on the wrong part of my feet and that was throwing everything off!  This was quite a shock.  So I started working on how to stand and walk.  And it turns out I needed to work on sitting too – I was sitting on the wrong part of my ass.  This sounds like a joke to some people, but I swear it’s the truth.  Some of you may even be dealing with the same problem.

Eventually I “graduated” enough that I could work on the exercises at home.  I made some progress, but then the fatigue hit me last year and I stopped doing my exercises altogether.  So now I’m back in PT, trying to regain what I’ve lost.  And today, we worked once again on how to stand properly.  It’s infuriating to have to think about how I’m standing!  Then she had me walk around the room, and I had to think about how to do that too!

I’m perfectly happy to do this, of course, if it works.  I just really hope it works!  And in the meantime, I feel like a one-year-old all over again.

Head up, chin down, belly in, hips even, weight on heel, and…. go!

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If you can relate to this, please pass it along and share the camaraderie!  Thanks!

2 Comments | Educating, Expectations, Frustration, Limitations, Medication, Milestones, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Rheumatology rock star

March 24, 2012

My rheumatologist is fantastic!  She sets the gold standard for medical care.  She went above and beyond yesterday!

I am very picky about doctors.  Actually, that’s a huge understatement.  I’ve received a lot of poor care over the years.  There was the pediatric surgeon with no compassion.  There was the internist who lied and told me a certain test didn’t exist even though it did.  There were the several who ignored my theories of what was happening with my body (and it turns out I was right.)  There were the many who simply wouldn’t admit when they didn’t have an answer.  That’s one of my biggest criteria: every doctor I see must be willing to admit ignorance when it’s warranted.  My standards are high, and I won’t accept inferior treatment any more.

At my first appointment with this rheumatologist, I told her early on that I understood that my condition didn’t have a particular name and that I was ok with that.  She looked downright relieved, then told me how it can take patients many years to accept that.  She was glad we could move on and focus on treatments.  I knew then that I liked her.  She understood.

Over the last several years she has been helpful and caring.  She only works three days a week, but if I leave a message with an urgent situation, she’ll call me back on her days off.  She’ll call me at 7pm if she’s been with patients all day.  I can always trust that she’ll call.  When I need to be seen and her schedule is booked, she always finds a way to squeeze me in.  She tells me when she doesn’t know what to do.  She’ll ask what I want to do.  She listens to my thoughts and theories and takes me seriously.  She trusts my assessment of my body, but conducts her own assessment as well.  I can actually trust her.  That’s not something I do easily.  And, of course, she’s good at what she does.  She’s knowledgeable.  She’s worked with other patients with my unique rheumatological situation.  If I ask her about something she’s not completely familiar with, she researches it and gets back to me.

But this week she really outdid herself.  I was blown away!  I’ve been on edge about signing up for disability insurance.  To make matters worse, there will be a big gap between short term and long term disability.  This is mostly because I got the paperwork for the insurance application on the first day of my rheumatologist’s 10 day vacation.  She’d told me she was going on vacation, but I didn’t realize what the timing of the paperwork would be.  Well, there was nothing I could do.  I sent her the forms, along with a note about the timing, asking that she not wait until our next appointment to fill it out.  I know how hectic things are after a vacation, but she’s been so responsive that I hoped she might do it within a week of getting back.  Boy was I wrong!

She got back from vacation on Thursday.  Early Friday morning she responded to my email and asked if she could call me later in the day to discuss the forms.  She called at the exact time she had said and then filled out the forms while we were on the phone!  She told me what she was writing and asked me questions about the various sections.  She told me she wanted to get it done right away because of my timing issue, then she apologized for not calling the day before!  She said she had to spend that first day catching up from vacation, which of course I understood!  Plus, we had a temperature and humidity spike last week, so I’m guessing that many of her patients were calling.  This paperwork is important to me, and I’m nervous about it, but I never expected her to do it on her second day back!  Her forms will get to the insurance company before mine!  (She faxed hers and I have to mail mine.)

I’m not thrilled with my endocrinologist right now, and I need a new gastroenterologist, and I might need to see a neurologist, and I’m not crazy about my PCP, but thank goodness that the one doctor I rely on the most, the one who provides so much of my care, is so fantastic!  I wish I could find more like her.  I wish we all could!

Good luck to you all in your search for good doctors.  Let’s hope there are plenty more like this one.  We all deserve them.

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If you can relate to this, please pass it along and share the camaraderie!  Thanks!

Leave a Comment » | Expectations, Healthcare, Medication, Raves, Support, Symptoms, Thoughtfulness | Permalink
Posted by chronicrants

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