Friday, May 18, 2012

One more reason chronic illness sucks

Now before I start, don't get me wrong. I wish people didn't have to be sick, injured, or anything else of the like. I wish that we all didn't have to go through the pain of it, emotionally or physically. And when people get well, it's a great thing.

But for EDSers, that's not something that we see much of. We get symptom relief, and remedies for some quirkier issues, but we're stuck with it for the rest of our lives.

When I went on sick leave in January and February of this year, I came back only to find out that a coworker had also been gone the same time. She was diagnosed with lymphoma and underwent a lot of medical crazy, spending very little time at work in the process. She's going through chemotherapy now. And halfway through her treatment, she's doing AMAZING. She's feeling better, off a lot of the meds she was on, her hair is growing back (though she's worn a wig/weave through the whole thing, so we never saw that change), she has more energy, and just feels better. She has less than two months of treatment left. Her last day is planned, and we were all congratulating her. And agreeing when she said a party was in order. (She said she's gonna eat salad and fruit and drink and dance all night - downside of chemotherapy is missing out on yummy things) So everyone started talking about celebrating and all the things she could do when her treatment was completed and everyone was so happy for her. She was so happy talking about it.

Then I felt really guilty for being jealous. She gets a "cured" party. I won't get that. I know that she's going to have to deal with this for the better part of the rest of her life, the side effects of the nuke-juice they pumped into her, the fact that history of cancer means always having to be on the lookout for cancer. But she's on the mend and is believed to recover completely. And I was mad that she got to celebrate that when I don't even get to celebrate little milestones for long because they tend to come back or new things take its place.

We have another coworker out having minor foot surgery (a tendon that needs repair after a patient got rough and she fell). Gift baskets/goodies are already being planned out and collected to take to her home to keep her happy and occupied while she has to remain off work.

Again, the guilt and jealousy over the love being shown while she's injured upset me. I have never gotten that kind of thought and love and support while I was sick.

Why? Because I'm always sick. So what if I'm off for a few days again, because isn't that just always how it is? But just because I'm "always sick" doesn't mean that I don't need some love and TLC to make me feel better sometimes. I don't need to be spoiled with gifts and parties, but just a text message asking if I need anything, asking if I'm doing better, offering a joke or a "get well" to make me smile. That's all I want from time to time.

To bring that up feels very heartless. Feels very rude. Feels unfair. I hate that because I'm going to have this illness for the rest of my life, it means I get/need less love and support.

Not fair, EDS. Just not fair.

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On another note, for the first time in at least 18 months (might be closer to 2 years) I made it over 30 days without seeing a single doctor. I didn't go to my primary, didn't go to the emergency department, didn't even have to make calls. Sure, there were still days I felt like hell, but I managed. I finally made a mark in the calendar for the better. But I have been to the ER since that mark passed. So, we start over. I've already got docs scheduled now, too, though. I go through it in waves: I'll see all of my docs multiple times for weeks, months trying to get things taken care of; then I'll be so sick of seeing doctors I won't go in at all unless it's emergent. I went through my "I don't wanna see anybody with an MD behind their name" thing, and now it's time to be proactive and crazy about my health again. Starting with a new GI doc at the beginning of next month. And likely a visit with the cardiologist shortly thereafter. I'm having issues managing dysautonomia symptoms. Worse than I used to. I think it's time I finally get more support and help on this one. So bring it on. My day planner is primed and ready!

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