Who I am vs. who I want to be

February 4, 2013

After I gained a lot of Prednisone weight a few years back, I would look in the mirror and the image I saw didn’t reconcile with the image I expected to see. The weight gain was so fast that my brain just couldn’t accept it. It was as if I was seeing a stranger in the mirror. That’s how I feel about my whole life right now.

I have had a lot of time to read lately. I’m not working, I can’t do a lot of activity, so I read. I read novels and historic literature, but I’ve also been reading a lot that falls into the self-improvement and personal development categories. I’ve been reading about personal finance, minimalism, and health. I’ve been thinking about which aspects of the things I read I’d like to adopt, and which I’d rather not. I’ve been thinking about my future, including where I’ll live and what career I’ll have if I can work again. Unfortunately, too much of what I want to do just doesn’t align with my capabilities.

In my mind, I’ve gotten rid of my car and I walk where I can, take public transportation, and ride a bike the rest of the time. I have a great career in a new field. I save money by getting rid of my house cleaner and fixing things myself instead of buying stuff to do it. I travel more, but on the cheap, including road trips and camping (assuming I get over my arachnophobia first.) I take up hobbies that are interesting, fun, social, and active, like sports teams (there’s a local lesbian/bi softball team I’d love to join), biking clubs, or hiking. I’d date more. I’d date a lot, actually. And there’s so much more.

Over the years, I’ve often wondered what my life would have been like if I’d never been sick. I know that in a lot of ways, I’d be a very different person. And I’ve had to accept that I’d never know for sure. This time feels different. I feel my health improving, but I just don’t know how far it will go. Maybe one day I’ll be able to clean my own bathtub without being in a ton of pain afterwards. I doubt I’ll ride a bike, though. I haven’t done that since I was 16, and the body parts that are stopping me are unlikely to improve. Maybe I could travel more, but I doubt I’ll ever be able to sleep in a tent without intense back pain. Starting a new career sounds nice, and I’ve been gathering information from friends and people online, but is it really possible? Will I ever have a full time job again?

I think about the person I want to be, and I just don’t know if I can ever get there. I want to so badly. I have insurance companies and government bureaucracies saying that I’m healthy enough to do these things, but if I were, I’d do them. Really. I know some people would rather just take the money and sit back, but that’s not who I am. I want to LIVE my life, not just watch it pass me by. I just wish I knew how to make it happen. If it can, that is. Because the person I see in the mirror isn’t who I really am. I want to be me.

7 Comments | Expectations, Frustration, Limitations, Rants, Unpredictable | Permalink
Posted by chronicrants

Missing opportunities because of illness

January 31, 2013

It isn’t just any job, it’s THE job.  I’ve wanted this job for years.

I used to work in a certain position in a nonprofit.  Then I quit my job and started volunteering at a nonprofit while I looked for new work.  I already had some friends who worked there, and I quickly became friends with a lot of the rest of the staff.  I loved going there, I loved the people, I admired the work they did.  I still volunteer there from time to time when I feel up to it.  They are all fantastic.  I wanted to work there, but there was just the one position that I wanted, and it was filled.  I got the impression the guy might leave, and I was hopeful, but I think something happened to change his mind, and he stayed.  I was so disappointed.  I could have done a fantastic job there.  That was years ago.

Today I found out that he just gave his notice!

I still want that job.  The people are still amazing, the location is still fun, the benefits are still unbelievable.  I don’t know the salary, but I have reason to suspect that it’s in a reasonable range.  If I was able to work, I’d apply tonight.  If I was working someplace else, unless it was a really unbelievable place, I’d apply tonight.  If there was any way at all…. but there isn’t.  My health is lousy.  I couldn’t even work part time right now, never mind full time.

I’ve missed out on a lot of things because of my lousy health.  There have been dates and friendships and romantic relationships and hobbies and family events and social gatherings and career opportunities and so many other things that I’ve missed out on.  Really, this is just one more.  But this hurts.  This is THE job, and I can’t even apply.

Leave a Comment » | Expectations, Frustration, Limitations, Rants, Symptoms | Permalink
Posted by chronicrants

Hormones suck and insurance companies suck more

January 25, 2013

I want to cry.  I am not sad or upset, but I want to cry.   That’s the beauty of having a prescribed hormone yanked away.

When I wrote this post a week ago, I figured the med would be approved eventually, so I’d just have one unpleasant month.  PrescriptionAs it turns out, the insurance company denied it completely.  I’ll need to appeal.  Or try another med.  Never mind that I’ve been on this one for EIGHT YEARS!  Never mind that my DOCTOR prescribed it because he felt it was the best option for me.  Nope, the insurance is deciding this one.

Memory is a funny thing, especially when you have cognitive and memory problems.  I know I’ve been off the med for brief times before, and I remember that it made me emotional, but I didn’t remember it being this particular level of hell.  For the last 24 hours, I’ve been a wreck at times and I’ve felt fine at times.  When I feel fine, I figure the other stuff was a fluke.  Then I’m a wreck again and I know that I need to find another solution.  I can’t just wait to see if my body normalizes over time.  (We tried that once.  It didn’t.)

I’ve been really anxious.  And I’ve been obsessing.  Last week, before the hormone change kicked in, I sent a text to the guy I’m sleeping with.  He didn’t answer right away.  I thought about him occasionally, had some nice sex fantasies, and assumed he was busy and would get back to me later.  Then I moved on and did other things.  Yesterday the hormone stuff started, and it was much earlier than I expected.  I sent him an email yesterday and he didn’t respond right away.  I started wondering if he didn’t like me anymore (even though we sent flirty messages earlier in the day and made a date for next week.)  Then I started thinking he was intentionally ignoring me.  He’s avoiding me.  He’s going to ditch me and that’s why he’s not answering.  He’s sick of dealing with me.

Ok, I know how ridiculous that sounds.  Even while I thought it, I knew it was ridiculous.  And yet, I couldn’t stop thinking it.  And I kept thinking about it.  Even when I tried to do other things, I kept thinking about it.  Every time I had an email or a text message, I wondered if it was him.  That’s not normal.  That’s not me.  I don’t usually obsess like this.  And I’m pretty sure that next week I won’t be obsessing and anxious and weepy.  But right now I am.  Right now I’m crying because I got a call about scheduling an appeal hearing for state medicaid, and I couldn’t thinking clearly enough to make an important decision (because of this mess with the medication,) and I started crying.  Again, that’s not me.

There are a lot of good reasons to stop taking a prescription.  I can think of many.  And they all involve choices being made by the patient and the doctor based on what’s best for the health of the patient.  None of them involve money or insurance companies, and yet that’s how my decision is being made right now.  This is just plain wrong.  I’d like to call the insurance company and tell them that, but when I called before, I started crying.  The irony.

So I’m legitimately angry, pissed off, furious.  That’s my normal response, and I’ll happily embrace it.  As for the rest, I’m hoping it goes away soon, so I can go back to feeling like myself.  I miss me.

4 Comments | Expectations, Frustration, Healthcare, Isolation, Limitations, Medication, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Skipping the handshakes and the hugs

January 24, 2013

It’s the season of contagious viruses again.  I am amused that as I sat down to write about this, I realized it was almost exactly one year ago that I wrote a similar post.  The big difference now is not in the outside world, but in me.

One year ago, I wrote about how easy it was to catch those germs from other people, especially through socially-mandated handshakes.  What’s changed is that I’m ignoring the social norms.  Last week I avoided shaking hands when I should have, I backed out of a couple of hugs, and I stopped mid-high 5 as I remembered the germs.  Each time, the person was surprised, but a quick, “I have a lousy immune system and the flu is going around” took care of it.  I was amazed at how well people have been responding so far.  Every time I make plans with friends, I ask them if they think they might be coming down with anything.  They aren’t offended, and they understand why I’m asking.

I think the real test will be next week.  I’m going to an event where friends will want to hug and every new person I meet (and there will be many) will want to shake hands.  I plan to wear pretty lace gloves that have been sitting in a drawer just waiting to be worn.  They’ll be a bit of a barrier.  Still, I will try to avoid hugs and handshakes.  I hate to tell people that I have a bad immune system, but simply saying that I’m worried about the flu makes me sound paranoid.  I could say I’m worried about the norovirus (which sounds worse than the flu to me in many ways!) but that’s probably no better.  When the time comes, I’ll figure it out.  But whatever I say, I know what I’ll do…. or actually, what I won’t do: I won’t risk my health by bending to social pressures.  Let the others shake hands and then pick up the veggie sticks and sandwiches.  I’ll be keeping my hands clean… and a bottle of hand sanitizer in my purse, just in case.

Leave a Comment » | Decisions, Expectations, Frustration, Limitations, Rants | Permalink
Posted by chronicrants

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