Too many disease treatment options

November 10, 2011

Too much information!

I read about a study done recently.  I don’t remember the details, but basically when people have more options available, they have more difficulty choosing an option.  They also feel more stress.  Basically, having a choice of 2 salad dressings is better than having a choice of 15 salad dressings.

This makes perfect sense.  I see it in so many places.  The last time I got a car, I picked a few good brands and looked only at their models.  I didn’t look at the others because it would have been too many options and that’s stressful and difficult.  Today in the grocery store there were too many types of bread.  I’m not kidding; I found myself spending way too long in the bakery section trying to choose the right loaf.  I need to get a gift for someone next week and I have a few ideas, but I just can not seem to decide which they will like best.  I’d rather just have 1 idea.

See the conundrum?  Despite what most of us think, having too many choices is actually a bad thing!

And that brings me to today’s too-many-choices problem: treatment options.  I want to take a new approach to treating my health problems but I don’t know how to go about it.  Which approach should I take?  The answer, of course, is to do research.  The problem is that so many of the alternative treatments are based on anecdotal evidence.  There are a bunch of diets, for example.  One works for some people, another works for other people.  In the meantime, I’ll be spending a lot of time and effort trying to add some things to my diet while removing others, and trying not to aggravate my IBS in the process.  And how should I balance everything?  There are diets for IBS and others for PCOS and others for Hashimoto’s and others for connective tissue diseases and and and….. How do I put these together?  I know my doctors won’t be advising me on this.  I tried going to a nutritionist once and she helped with an IBS diet but didn’t know about the others.  There may be nutritionists who specialize in these autoimmune disease diets but I don’t know who they are or how to find them.

I know I need to pursue this, but it’s so overwhelming.  Having all of these different options makes me want to just bury my head in the sand and wait for it to pass.  The problem is, it won’t pass.  These symptoms aren’t going away.  I need to do something proactive.  I just wish I knew what it was.

 

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.

1 Comment | Decisions, Educating, Expectations, Frustration, Limitations, Medication, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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

9 Things to Appreciate About a Sick Body

November 3, 2011

Appreciation.  If I had to choose something positive about all of this health crap, it would be gaining appreciation.

This is my 100th post to this blog.  It’s amazing to me that in less than four months I have written 100 posts.  How did that happen?  This started as a place to vent about frustrations and irritations.  I still do that, but I find that I’ve been branching out.  And today I want to branch into appreciation.

We all take things for granted.  I’m not suggesting that I appreciate everything I have and everything I can do.  I wish I did, but that’s just not realistic.  Still, there are so many things that I do appreciate about my body.  I’m going to share a few (but there are many more) with you in no particular order.  I hope this helps you to think of some of your own.  Feel free to add yours in the comments to inspire others.

  1. Sleep.  I don’t get as much as I’d like, but at least I get some.  The meds only disturb my sleep a little, and I can sleep through the pain most nights.  I’m so grateful for that.
  2. The ability to walk.  Some days I can’t walk, or walking is incredibly painful.  I definitely appreciate walking when I can do it.
  3. My knees.  Saying this always makes me think of this song (at 2 min, 20 sec).  I first heard this song early in college.  I thought I appreciated my knees back then.  I was wrong.  Little did I know that before I graduated my knees would be the source of a lot of pain.  Now, I’m so thrilled when they don’t hurt.
  4. Mild nausea.  This may sound odd, but it’s true.  I have had IBS since I was a teenager, but I had symptoms for many years before it was diagnosed and for many more before I got a handle on it.  I still have symptoms, but they’re not as severe as they used to be.  Now, when I have mild nausea or other symptoms, I’m incredibly glad that it’s not as bad as it used to be.
  5. My mental abilities.  There are times when I can’t think clearly because of a lack of sleep or because of medications or for some unknown reasons.  Most of the time, I can think clearly, and I am very thankful for that.
  6. Making dinner.  There have been times the fatigue was so bad that I couldn’t bring myself to make a meal, or even to boil water for pasta.  I live alone, so this means I don’t eat.  Now I’m so appreciative when I am able to make something, especially when it’s more advance than Ramen.
  7. Going to the gym.  I was never one of those people who enjoyed exercise.  Still, I was able to exercise back before things got bad.  Then for years I couldn’t do much at all.  My physical therapist even told me not to go to the gym because I was too likely to injure myself.  After a lot of PT, I was finally given permission to go.  I can only do a few types of weights and at very low settings, and only short amounts of time on the cardio machines and at low settings, but at least I can do it!
  8. Standing on the T.  There are times that I simply can’t stand on the T (our subway.)  If I’m in too much pain or I’m not balancing well then I need to ask someone to give me their seat.  When I’m able to stand, though, I’m just very glad that I’m able to do it.
  9. Lack of pain.  I have pain in some part of my body at some point every day.  There was a time, though, that I was in pain every second of every minute of every day of every year.  It lasted 9 years.  After a while, I forgot what it felt like to not be in pain, and this upset me more than the pain itself.  My biggest wish was to have just a few minutes without pain, just so I could experience it once more.  Then I tried a disease modifying drug and it worked; the pain went away.  No, the pain didn’t go away completely, but it did disappear for short periods of time.  Now I have minutes without pain, and hours where the pain is low enough that I can ignore it.  I can’t tell you what an amazing gift this is.  I could almost cry right now thinking about it.  The unending pain may come back one day, or maybe it won’t, but at least I’ll have had a chance to appreciate how amazing it is to not feel any pain, even if it’s only for minutes at a time.
Did you notice a pattern?  Each thing I listed is something I can do/don’t have today but that I couldn’t do/did have at some point in the past.  These are actions I can take or symptoms I no longer have.  I appreciate them because I know how it feels to not have these abilities or to have the additional symptoms.  Does this mean I’m healthy and symptom-free?  No, of course not.  And yes, there are days that I wallow in the misery of it all.  But I do try and remember all the good things that I’ve got right now.  I think it’s important to appreciate as much as possible while I’ve got it.
So what do you appreciate about your body?  Write down 5 things right now, and reread them at least once a day to remember what you’ve got.  After all, it couldn’t hurt, right?  And it may just help.

4 Comments | Educating, Limitations, Raves, Support, Symptoms | Permalink
Posted by chronicrants

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