7 weeks, no cheating, feeling proud

August 14, 2012

Wow, I am so proud of myself!

I usually see all the crap I have to do for my health as just the crap I have to do for my health.  I have no choice, so I’ll do it.  Well ok, I don’t do my physical therapy every day.  And sometimes I use too much energy to do something I really want to do.  But for the most part, I just suck it up and do (or don’t do) whatever I have to.

That’s why when I went gluten-free, I didn’t understand why people seemed so impressed by it.  They were shocked that I didn’t occasionally slip up and go for the gluten foods just for the hell of it.  This didn’t make any sense to me – why would I do something that would make me sick?  Yes, I accidentally ate gluten a couple of times – there’s a learning curve after all.  But I never did it intentionally.

But this elimination diet has been very different.  I guess the big difference is that gluten could be affecting my health in major ways, whereas we suspect this diet has more of an immediate affect.  I noticed big changes within just a week of starting it, so I figured I could cheat, and still be ok if I went right back on it, right?  Right?  RIGHT?  Besides, not every food I eliminated is a problem, it’s just a guessing game, so maybe a bite of cheese would be ok?

I came so close to cheating so many times.  I was ready to do it over and over.  Maybe I’d just take one bite of the gluten-free whoopie pie (pictured.)  Maybe I’d just try a couple of potato chips.  It wouldn’t really hurt, would it?  But I knew it would hurt mentally, whether or not it hurt physically.  If I cheated once then I’d keep doing it over and over and soon I’d be sick again.

Taking the blood test that would give me more concrete answers was great, but I knew I should still stay on the diet until I got the results.  Otherwise I’d just be feeling bad again.  It’s been really tough this time around.  My willpower was testing more than ever.  I wanted just a little bit of sugar, or to ignore the canola oil exemption, or to have a little bit of ketchup…. but I didn’t.

And so even though I usually see my health stuff as simple obligations and not as something to be proud of, today I am damn proud!!!  I stayed on this tough diet for 7 full weeks without cheating even once!  It’s such a relief!  Tomorrow I get my blood test results and I’ll know for certain (or at least as certain as a blood test can be) which foods are ok and which I have to avoid.  That will be easier, because at least I’ll know.

So today I’m celebrating my big success before starting a new challenge tomorrow.  There’s always a new challenge.  I’m just glad I won the last one (and that it didn’t last the 6-12 months that it could have without the blood test!)

Leave a Comment » | Expectations, Limitations, Medication, Milestones, Raves, Symptoms | Permalink
Posted by chronicrants

A little support from well-known strangers

August 8, 2012

Last night was a bad night.  A very very very very very very very bad night.

After 6 weeks on a strict elimination diet, I thought I was done with the bad GI episodes.  The daily and near-daily nausea, diarrhea, constipation, cramps, and abdominal pains were gone and I was thrilled.  I also hadn’t had an episode in a while.  For me, an “episode” involves diarrhea, nausea, and abdominal pains so bad that I start to wish for death.  An hour feels like 10 hours and I wonder if it will ever end, even while a little voice in my head tries to tell the rest of me that it’s only temporary.  It’s hard to believe that voice.

I love Tuesday nights in general because it’s the night of the Chronic Babe chats.  I rarely make plans in the evenings, but when I do, I try to avoid Tuesday nights.  There’s a great community there that’s so different from anything else, and I always leave the chats feeling better than I did when I started.

So last night a friend wanted to come by to pick something up from my place.  I told her she’d have to leave by 9pm because of the chat and she completely understood.  I felt a bit off all afternoon, and 10 minutes before she was due to arrive I started feeling really lousy.  I didn’t cancel, though, because I figured she was already on her way and I knew I could always kick her out if need be.  She’s an old friend who understands.  Besides, I was trying hard not to admit there was a problem.  So she came and we chatted a bit, and all the while I was feeling worse and worse.  I finally asked her to leave.  I couldn’t figure out what it was.  I was in denial.

Then it hit.  The GI symptoms were as strong as ever.  It didn’t make sense – this was supposed to be over!  I sucked on the Pepto tablets and rocked back and forth on the couch, running often to the toilet, hoping it would be over soon.  After what felt like several hours I looked at the clock – it had been 30 minutes.

Eventually the symptoms lessened enough that I was able to pass out on the couch.  A while later I woke up and stumbled to my bed.  Thank goodness.

And this morning I got the most wonderful treat: two of the other regulars in the chats had emailed me, each asking if I was ok!  I had told one of them I’d definitely be there last night, and I’m usually there every week, so they were concerned.  How sweet!

The amazing thing is how much we know about each other without actually knowing each other.  I’m still a bit paranoid about anyone finding out who I am, so no one knows my name, even my first name.  No one knows anything that could identify me.  And to be honest, I don’t know much about them either.  I know one’s occupation.  I know one’s first name.  I know about their pets and families… but I don’t know who they are.  Just like they don’t know who I am.  This is a new experience, having a support network of people I don’t know.  It feels odd, but I like it.  I like that we care about each other and that we understand each other.  I like that we do not place any demands on each other, but we are still there to support each other.

And I love that I found two caring messages in my inbox this morning, when no one else had even known I was especially ill.  It makes a big difference.

Leave a Comment » | Expectations, Isolation, Kindness, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Little red dots

August 7, 2012

I have pale, smooth skin, so it’s always been easy to spot new freckles or scars.  A month or two ago I noticed a red dot.  Then I noticed some others.  This isn’t a rash.  They are not clumped together.  They do not feel itchy.  They are not raised.  There are a bunch on my arms and more on my legs.  There’s one on a boob.  My first thought was that it has to do with capillaries.  But that’s as far as I got; I really don’t know anything about skin stuff, except how to watch for something potentially cancerous.

As long as I was at my rheumatology appointment today anyway, I figured I’d show her the spots.  She said the same thing: capillaries.  She told me to see my dermatologist.  Damn.

So should I bother?  I’m overwhelmed with all of the medical stuff.  This isn’t harmful, but we want to make sure it isn’t indicative of something else.  To see my dermatologist I’ll need to get a referral from my PCP.  And I’d need an appointment before my insurance runs out in a month.  A MONTH!  Ok, deep breaths.

And that goes back to the main problem: I’m overwhelmed.  I hope to get my medicaid paperwork in the mail by Thursday, and I’m determined to finish the letter for the LTD appeal by Thursday too.  And then I need to start the application for SSDI.  Plus I should get some important test results soon and that will mean new treatments.  And what about all the other doctors I’m seeing.

I love my dermatologist.  She’s very capable and she’s sweet.  I always feel good about her work.  But I don’t want to see her right now.  It’s one more thing, and it might be one thing too many.  And for what?  To find out that this is nothing?  Because it’s almost definitely nothing.  But then, what if it isn’t…..?

3 Comments | Decisions, Expectations, Frustration, Healthcare, Rants, Symptoms | Permalink
Posted by chronicrants

Procrastinating into misery

August 4, 2012

Procrastination is a tricky thing.  I went to a great seminar a while back on how to avoid procrastination.  I’d love to say that I use those techniques all the time, but the truth is that I’ve mostly forgotten about them.  I sure remembered them today, though.  I had no choice.

The main idea that the presenter wanted to convey is that we procrastinate out of fear, and I think she’s right.  Often there’s a fear of failure, or a fear of not enjoying the process.  In my case, with this paperwork, it was a fear of confronting difficult emotions.  It was a fear of having to accept the reality of my situation.

So after a week of procrastinating, I finally read and signed the new contract with my lawyer.  I don’t know if she will be able to succeed in winning the LTD insurance appeal, but it’s worth the effort and the money to try.  And after a week of dreading this, of thinking about it and then avoiding it, it took very little time and effort to just do it.  And I could finally move on!  Why didn’t I just do that a week ago?

Even worse in my mind was applying for Medicaid.  I am so lucky that I am potentially eligible for Medicaid in Massachusetts, because I know that would not be the case in so many others states.  And I know that I need to apply this week, based on the timing of when my current health insurance will end.  After many weeks of coming up with semi-legitimate excuses to put off the application, then a week of completely absurd excuses, I finally sat down to do it today.  Today was the day to get this done.  No more excuses  And I did it!  It was much easier than I expected and it really didn’t take that long after all.  Yes, it sucks to have to need this, but it’s better than not giving myself any options.  It took very little effort and it’s now almost done.  I just need to call the office on Monday to clarify a few things, then I’ll be ready to print it, sign it, and mail it!  Again, why did I just do this weeks ago?

Being too sick to work means having to do a lot of extra paperwork and other shit.  I can’t get around that.  But I can get around the extra strain of having it hanging over my head for weeks or months by just getting off my ass and getting it done.  It may not be easy to do this, but it’s better than procrastinating more!

Next up is SSDI.  I’ve been putting this off for months and now I can’t wait any longer.  I am not eligible to receive benefits for many months still, but the sooner I apply, the better off I’ll be.

So this is my public announcement that I will not procrastinate on SSDI or any of the other crappy illness-related paperwork.  From now on, I will get it done as soon as I can.  It may take a while, especially when I have a string of bad days, but I will do the best I can to get it done as soon as I can.  And I hope that makes everything just a little bit easier.  Please feel free to hold me accountable!

Leave a Comment » | Decisions, Expectations, Healthcare, Milestones, Raves | Permalink
Posted by chronicrants

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