The double standard of pursuing treatments

February 9, 2012

But they must have some idea how to treat you!?

I’m so sick of hearing that, but somehow I found those words coming out of my mouth today.  I hate when people say that to me.  I’ve accepted that there’s no straightforward treatment for my CIs, that the best we can do is slow things down.  I’ll never be “healthy.”  I can handle that.

But I hold my friends’ health to a different standard.  Sure, the doctors can’t cure me, but they must be able to cure everyone else!  Besides, my friend has a diagnosis.  They know what’s wrong with her!  Why can’t they fix it?!?

I get very protective over my friends.  She knows this.  And she’s known me for ages, since years before I had any symptoms.  So when I made that comment, we both just broke out laughing.  Imagine, Ms. R of all people suggesting that there must always be a cure!

It’s a double standard of sorts, but one that I’m fiercely protecting; I want my friends to be cured.  All of them.  Even if I never get better, that doesn’t mean they won’t either.  I want them to keep fighting for results.  And I’ll be there to support them the whole way.  I just hope they don’t give up.

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Leave a Comment » | Decisions, Educating, Expectations, Frustration, Healthcare, Insensitive, Limitations, Medication, Support | Permalink
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Adding insult to injury

January 25, 2012

My family has always been close.  Sure, there’s the occasional outlier, but generally we’re all there for each other.  We take care of each other.  And that’s what made yesterday and today so difficult.

In the middle of the night Monday, my grandmother was taken to the hospital.  She lives near me in the Boston area, and so do two of her children, my mother and an aunt.  My mother and my aunt took care of my grandparents yesterday, staying with my grandmother and taking my grandfather home to get some rest, then back to the hospital for another visit.  No one had gotten much sleep the night before.  My aunt slept at my grandparents’ apartment yesterday so that my grandfather wouldn’t be alone.  My  mother “slept” (but really didn’t get any sleep) on a cot in my grandmother’s hospital room.  I stayed home.

I want to be there, to spend time with them, to help, but I can’t simply because my immune system sucks.  There are too many germs in the hospital.  Norovirus is going around, and they have a case of pneumonia there too.  Even my sick grandmother told me it wasn’t safe for me at the hospital!  I wanted to argue, but the truth is, they’re right!

It’s bad enough when I can’t take care of someone because I don’t feel up to it, but this time I actually felt ok and I still couldn’t help.  I’m pissed off!  It sucks when I feel lousy, but then it has to intrude on my ability to help others?  That’s just so wrong!  I’m glad there is other family around to help out in times like these, but I should have been able to help too.  I’m lousy at handling my limitations.  I know that.  But this is just going too far.

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Leave a Comment » | Decisions, Frustration, Isolation, Limitations, Rants, Symptoms | Permalink
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Suffering symptoms vs. stepping into side effects

January 23, 2012

I thought Thursday’s fall was bad, but I had no idea what my body was really in for.

On Thursday, before the fall, I had finally had the big appointment with my rheumatologist.  Even though we didn’t have any solutions, I felt much better afterwards.  She reminded me that I’ve had a lot of ups and downs over the years, and that my memory was a bit clouded; yes, I’d been just as bad off as this before, sometimes worse.  And while it wasn’t necessarily a solution, we did have a course of action: a new med.  This was an anti-depressant that’s sometimes used for these kinds of illnesses.  It can help with fatigue and with arthritic pain.  Sure, there are some severe potential side effects (like suicide!) but we decided to try it.

Boy was I unprepared!  Within a few hours I was really hot and my skin was tingling.  My heart was racing.  I had diarrhea.  And then I was vomiting like I never have in my entire life.  This was bad!  Luckily, I had a friend visiting and she insisted on staying all day, until I felt better and went to bed for the night.  Thankfully, the worst of it only lasted a couple of hours.

Now, obviously I knew this was bad, but I didn’t realize how bad it was until I heard my doctor’s concern today, and then heard her shock when I said I’d only taken one dose.  She had prescribed the lowest dose they make.  This was considered a very severe reaction.  So the question is, should I try a different type of anti-depressant?

For a less severe reaction, of course the answer would be yes.  The funny thing is, I was willing to risk it, but my doctor wants to exhaust all other options first.  Now, I don’t really want to go through that horrible experience again, but it was only a few hours, and isn’t it worth it if the drug might actually work and help me?  Like I said before, the options are lousy, but they’re all we have.  Just because the side effects suck doesn’t mean they’re necessarily worse than the symptoms that the meds are trying to fix.

It happens all the time, and for me it’s happening again: symptoms vs. side effects.  What a rotten choice.

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Survival instincts

January 11, 2012

My future is looking a bit bleak at the moment.  I’m sure a lot of that has to do with the tinted glasses I’m wearing – I’m so focused on the negatives, it’s hard to see the positives.  So what’s the answer?

I really don’t know the answer, I just know I have to keep moving forward.  That’s all I’ve got.  And for years that’s all I’ve had.  For better or for worse, I just have to keep moving forward, because there’s simply no other choice.  Just keep moving forward.

I’m reading an incredible book right now about life in North Korea.  It follows the lives of several people starting in the 1970s.  I’m up to about 1998 now and I can’t wait to see what happens next.  I know they survive only because they live to tell their stories, but as I read about the famine, about how these people beg and steal, how they eat grass and tree bark and unidentifiable food-type items, how they choose between antibiotics to save a son’s life or food for the family, it feels like a different world.  It is not as if I think there aren’t hungry people in the world, but I’ve never heard first-person accounts like this.  These people went from having three meals a day to not eating for days at a time in the course of just a year or two.  They watched their loved ones starve to death in front of them.  They describe malnourished children with distended stomachs, adults with flaking skin, and I start to cry.  And then I wonder how long I would have survived.

Forget my health problems.  Obviously that would affect things.  But aside from that, would I have made it?  Or would I have been one of the first to go?  I have a steely resolve.  I have a strong survival instinct.  I know this.  I also know that I would want to help others, that I would hesitate to steal or cheat.  But maybe in this circumstance that wouldn’t be true?  I can’t imagine it, and I would guess that no one can.  You don’t know what you’re capable of until you’re forced to find out.  Still, right now, I don’t know that I’d make it.  At the time of that famine I was a teenager, happily going to school, hanging out with friends, dating, researching colleges.  That girl might have actually done ok.  I was even more stubborn then than I am now, and somehow I think I might have been ok for the early years.  Still, I can not imagine how they survived it.

So even though I am depressed and overwhelmed by the potential problems of the near (and long-term) future, I know that I have to summon my strength.  I come from a long line of stubborn folks.  My grandparents have survived an awful lot, and much of it seems to be by shear force of will.  My mother amazes me with the obstacles she overcomes.  I have that same stubbornness in me.  It’s time to use it.  I am not facing war or famine.  Hard as my problems may be, it is really only my own inner demons that I have to fear.  So I just have to remember: keep moving forward.  There’s no other choice.  Just keep moving forward.

 

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4 Comments | Decisions, Expectations, Frustration, Limitations, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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