The finding a new doctor blues

November 8, 2011

I hate first appointments with new doctors.  Seriously, I can’t stand them.  I always feel horrible afterwards.

Yes, I know that for some people this sounds really strange, but hear me out.  This actually makes some sense (at least, it makes sense in my head.)

First, there’s the uncertainty.  Will this doctor be any good?  Will they help me?  Will they hurt things?  If it’s a primary care physician (PCP) like today, will they give me the referrals that I need/want?  Will they order the right tests?  Will they prescribe the right medications?  Will a PCP give me the letters that I need for my FSA?  What if it doesn’t work out and I have to start all over again someplace else?  Will my insurance allow that?

But to be honest, those don’t matter as much as the other thing.  I know they’re important, but it’s the other thing that makes starting with a new doc so hard.  Those are just uncertainties, and those questions will all be answered soon enough.  The other thing, though, that’s emotionally rough, and it makes the appointment itself difficult to get through.

Every time I meet with a new doctor, I have to give them the list.  It’s bad enough to have a bunch of illnesses, but having to list them out, one after another, is wrenching.  I feel ridiculous; even to my own ears it seems like I must be making this stuff up.  And even when the doc is nice and professional and accepts the information appropriately, I still have to review it all.  Going over everything, all at once, is just too much.  Those 20 minutes are draining, and by the time I leave, I have trouble getting out of my own head.  It’s too easy to just keep thinking about all of the illnesses.  Connective tissue disease?  Let’s go over details.  IBS too?  Describe the diet.  Hypothyroid?  Review the treatment.  PCOS also?  Give the family history.  High cholesterol and seasonal affective disorder and two forms of scoliosis?  Detail onsets.  The list just keeps going and going and going.  It’s worse than the Energizer bunny from those old commercials.

I left my first appointment with the new PCP today feeling lousy.  I was sad and discouraged and tired.  At first I didn’t know why, but it hit me fast: I spend a lot of time and energy trying not to think about my myriad health problems, and here I was just forced to confront them all simultaneously.  What a cruel form of torture.  I sure hope I don’t have to go through that again any time soon!

If any of this sounds familiar, if you can relate, please share it on Facebook and/or tweet it on Twitter so others know it’s not just them, that they’re not alone.

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How to track CI symptoms

November 6, 2011

How do you tracking your health stuff?  I’ve been looking for a good method but I just don’t know where to start.  The thing about chronic illnesses is that they’re, um, chronic.  Ok, yeah, that’s obvious, but hear me out.

If I had an ear infection and the doctor wanted me to track the pain for a few days, that would be easy.  But with a chronic illness, it means tracking things for the rest of my life.  Also, with the ear infection, I’d just be paying attention to pain.  With chronic illnesses I need to track pain, fatigue, nausea, blood tests, medications, MRIs, and many other things.  It’s a lot to keep track of!

A good tracking system could be invaluable.  Have you ever gone into the doctor, told them you were feeling better, then later wondered why on earth you said that?  I have.  I may have been feeling better at the time, but that didn’t mean I was doing better over all.  Oops.  It could provide a less subjective-to-the-moment viewpoint.  Plus, how great to be able to see how symptoms varied based on changes in medications or menstrual cycles.  But wait, stress could be a factor, so I suppose I should track stress levels too.  Oh, and climate makes a huge difference, so I should include that.  And working plays a huge role, so weekdays vs. weekends vs. vacations should be included.  And of course it should be electronic.  And it must be searchable, so that I enter a search term and I can see everyplace it occurs.

And based on all of this, I am suddenly spending an hour or more every day filling out information about how I am feeling and possible contributing factors.  It’s just too much, right?  How are we supposed to do this?

Someone must have a good solution.  If you have one, could you let me know?  Thanks!

Leave a Comment » | Expectations, Medication, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Setting chronic illness goals

October 24, 2011

What’s your CI goal?

We all have different goals, of course.  There are the big picture goals, the ones that shape our lives.  For me, that’s spending time with family and friends, dating, keeping a full time job, and taking care of myself while living alone.  Some of these are easier than others at different times.  Sometimes these feel impossible.  But so far, they’re all doable.  Ok, maybe I can’t do them all simultaneously, but I’m working on it.

And then there are the illness-related goals that focus on the symptoms.  For me, that’s reducing the pain, finding ways to better relieve the pain when it hits, reducing fatigue, and removing weakness.  I suppose I’ve had these goals for so long that I’ve just taken them for granted.

Over the weekend I was talking with a friend who suffers from severe chronic pain.  She’s been using a form of exercise to try to ease the pain.  She told me that it started to work better when she stopped using it to get rid of the pain and instead thought of it as a way to reduce the pain.  I was shocked!  It never occurred to me that she was trying to get rid of the pain completely.  I guess it wouldn’t have mattered – I couldn’t have talked her into anything different because she wasn’t ready for it yet.  Still, I forgot what it was like to have hope that despite everything, it might one day go away.  I stopped thinking that way many years ago.

I’m happy for my friend that she has this new outlook.  Now, any reduction in pain is a success.  Maybe it will go away completely one day, maybe it won’t, but for now, she won’t feel like she’s failing at “curing” her symptoms.

I learned a long time ago that my pain would never go away.  It took a long time to accept that reality.  And then it went stopped!  I still have pain, but it used to be 24/7, and now it’s only on and off throughout any given day.  Some days I can almost ignore it completely.  This huge, amazing, unbelievable!  So I’m keeping an open mind and I know that anything is possible.  Still, my goal isn’t to get rid of any of my symptoms (except the weakness, which is almost definitely temporary.)  If I just focus on reducing them, then maybe they’ll go away and maybe not, but at least I could get to a point where they were liveable.  If I can live with them and still meet my big picture goals, then that’s good enough for me.  Hell, forget “good enough,” I’d be dancing in the streets with joy.

What about you?  What are your goals?  I’d love to know.  Make a comment below or send me an email.

Leave a Comment » | Decisions, Expectations, Limitations, Medication, Pain, Rants, Raves, Unpredictable | Permalink
Posted by chronicrants

Understanding drugs

October 20, 2011

A friend was trying to comfort me.  She suggested that maybe there would be a new drug treatment soon.  I said there wouldn’t be because, well, there won’t be.

The process is slow.  If a scientist comes across some great discovery today, it will be many years before it is a drug that I could take.  And of course, even then, my doctor may not want to prescribe it or my insurance may not cover it.  But first there needs to be a drug that could help, and there just aren’t very many of those.

It was reassuring to see this article in the newspaper the other day.  Sometimes, like with penicillin, there are fortuitous accidents.  I don’t know about you, but I really don’t want to wait around and hope that someone gets lucky.  A lot of medications are used off-label, meaning they were developed to treat one thing, and ended up working well for something else (think: Viagra.)  And then there are the meds that are being used as they were designed.  I suppose I could do some research to figure out how many of these exist now, but I’m too tired or too lazy or maybe both.  The point is, there are a lot of medications that are not being used as they were designed.  That’s ok, but wouldn’t it be nice if it didn’t have to happen that way, because drug interactions were so well understood that scientists could design medications to treat any condition they chose?

That’s the dream.  Reading this article, it’s good to see that some people are pursuing this approach, and I sincerely hope they can make it work, and soon.  Now I know that doesn’t mean I’d get a drug that would help my conditions specifically.  I’m sure these methods would be used to treat more common illnesses first.  Still, after they treat cancer and AIDS and so many others, maybe, one day, they’ll get around to mine.

There are limited resources, and time continues to alternately crawl and fly by, but it’s encouraging to see progress like this.  Throwing money at research isn’t enough.  Politicians and argue forever about how to allocate funds.  At the end of the day, though, it’s about being smart.  Think about how much farther the dollars would go with greater understanding of the human body.  Think about what could be achieved!

 

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

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