Being unique but not alone

November 9, 2011

I started this blog so that others going through autoimmune issues, with all of the weird symptoms and situations, would know that they aren’t alone in their frustration, anger, and fear.

I read other blogs by people with autoimmune conditions so that I remember that I’m not alone either.

Today I was reminded just how lonely it can be.

My grandmother has been dealing with pain for several years now, but it has recently gotten much worse and she is having difficulty walking.  Using a walker was a difficult transition for her when she did it years ago.  Now she’s facing using a wheelchair.  She knows that once she begins using a wheelchair, she is unlikely to ever walk again.  Sure, she may walk around the apartment, but beyond that, she’ll be dependent on the chair.  It feels much more limiting than a walker ever did.

She is clearly scared and frustrated and mad and feeling isolated.  I want so desperately to say “I know how you feel,” and “You aren’t alone.”  I want to make her see that she can get through this.  But the truth is, I have hated it when people have said similar things to me.  That’s why I like blogs and Twitter: they’re passive.  I take what I want and ignore the rest.  And as much as I understand a lot of what she’s going through, I know that she really does feel alone in many ways, because no amount of understanding will make this anyone else’s situation but hers.

I also have to admit that I don’t truly understand.  I know what it’s like to be in pain.  I know what it’s like to need a wheelchair.  But everyone’s pain is different.  And my using wheelchairs has always been temporary.  Plus, anything will be different at my age in my 30s than it will be at hers in her 90s.  Still, I hope she allows me to provide support, but I know a lot about how this feels.

She is a strong woman and I admire her a lot.  When she finally agrees to use a wheelchair as needed, I hope she can find peace in her decision.  It is not an easy one.  And while her situation may be unique to her, she knows that she has a very supportive family and that we will all do whatever we can to help.

So for the days that you feel alone, remember who your support network is.  Talk to them, laugh with them, cry with them, and feel a bit less alone.

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

Leave a Comment » | Educating, Expectations, Frustration, Insensitive, Intrusions, Isolation, Kindness, Limitations, Pain, Rants, Support, Symptoms, Thoughtfulness, Unpredictable | Permalink
Posted by chronicrants

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.

Leave a Comment » | Educating, Expectations, Frustration, Isolation, Medication, Rants, Symptoms | Permalink
Posted by chronicrants

Focusing on 3 good things

November 7, 2011

I’m having an off day.  I guess we all have those sometimes.  Ok, I’ve had a bunch of them lately, but who’s counting?

So in an effort to get myself back on track, I’ve decided to focus on the positive.  I’m keeping it simple with just 3 things that went well today.  There are many more I could write out, but for now I’m just focusing on these 3.

  1. Alert, productive, sunny morning.  I seem to get sleep and foggy-brained in the afternoons, but my mornings have been ok.  I’m trying to take advantage of that, and this morning I was actually productive and got some things done.  And the sun always helps.  It was great to see that bright blue sky.
  2. Kittens!  I visited with a friend and played with her little kittens while I was there.  I’ve never been a cat person.  Some are ok, 
    and a few I even like, but I definitely prefer dogs.  There’s something about this orange one, though… I’m totally in love.  Playing with adorable kittens definitely perked up my day.
  3. Laundry.  Yep, I’m considering laundry a positive thing.  I have clean clothes, I  won’t have to worry when I open my underwear drawer tomorrow, and best of all, I was able to do it without completely wearing myself out.  That’s cause for celebration if there ever was one.  Plus, after a week of putting it off, I can finally cross this off my to do list.

 

Like I said, there were other good things, like good conversations with friends, but to keep it simple, I’m only listing 3.  Wow, I feel better.  It helps to focus on the good things for a change.  What are your 3 positive things from today?

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Posted by chronicrants

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

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