This has undoubtedly been a rough week for me so far, but some good things have happened too. Here is a short run-down of the last few days:
Sunday and Monday, one of our pipes froze because of the freakishly cold weather so we had no water until that section thawed out. Luckily, it didn’t cause the pipes to burst or anything like that. My husband thinks he solved the issue by replacing the insulation around the pipe, but I guess we’ll find out the next time we all freeze.
Yesterday I had my appointment with the rheumatologist to get my Ehlers Danlos testing done. I’m officially a zebra! Right now my diagnosis is Hypermobile Ehlers Danlos, although I do plan to try to pursue genetic testing to make sure none of the other EDS genes are playing a part. The doctor also highly suspected I have POTS (postural orthostatic tachycardia syndrome), which would help explain my dizzy spells, vertigo, feeling faint, and maybe even a few episodes of passing out when I was younger. It sucks that there is no cure or really even further treatment other than what I’m already doing, but it is wonderful to have some answers that finally make sense!
Tuesday I made the mistake of posting in a Facebook chronic illness group about my surprise that a zoo we want to visit charges $25 for the use of a wheelchair for a couple hours. Soon I was accused of being entitled, expecting everyone else to pay for my disability, and even being too poor to go to the zoo if I couldn’t afford the extra charge. The attacks got to the point that it actually made me cry because it hurt my feelings so much. I wasn’t even saying that the zoo had no right to charge for use of their equipment, I was just questioning whether the price was a bit high for the time it would be used. Of course, then I heard that some zoos and theme parks charge way more, some even over $100 a day! I can’t help but feel personally that is taking advantage of the disabled. Maybe I’m wrong, but I still feel that way.
Last night all this stress took its toll on me. I had the worse migraine I have had in years. Luckily, I still had some migraine pills from the last time I filled the prescription which was several years ago. They were technically expired, but still did their job. Today I have that slight headachy, hung over feeling I always get after a severe migraine.
Maranda Russell 
People can be so damn ignorant. Until they’ve walked in your shoes they just cannot seem to empathize. Sad. Keeping you in my prayers. You’ve got enough in your plate, don’t let small minded individuals add to it.
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Thanks so much. I think it makes it even worse when other people who have chronic illness/pain attack you like that. You would think if anyone would understand it would be them 😦
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Agreed!!
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Sorry you were bullied by people about the zoo comment. It’s a ridiculous amount to charge for wheelchair use. I think zoos charge enough to provide wheelchairs for free, like grocery stores and many other shopping venues. it’s part of making zoos accessible. Most people with disabilities can’t get jobs, so we are poor, but we deserve to be able to see zoos and art galleries and other cultural places that are partially funded by tax dollars. That said, it might be a good idea to invest in a wheelchair or transport chair. Sometimes you can get them really cheap on Craigslist. They’re nice for bad days and taking walks through parks. Hope you feel better soon.
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Yeah, I have considered investing in a wheelchair of my own. I would like to get a motorized one, but then I would have to get a vehicle that could transport it as well as we only have compact cars.
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it really doesn’t seem right to profit off of someone’s disability. and if zoos are true to their purpose of education, they really should be accessible to all–even poor people. talk about entitlement.
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(speaking as a low-income mother of four who cannot afford to go to over-priced zoos)
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Yeah, since zoos are about half tax funded, it would be nice if there were programs for people who can’t afford to go. I do know some zoos do “free” days at least once a year. I don’t know if the ones near you might do that.
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Yeah, I really felt unfairly attacked. I’m fine with people disagreeing with me, but why do they often have to turn it so personal?
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that’s happened to me a few times on facebook groups. i got so i was afraid to say anything in a group because i was bound to offend someone.
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Yeah, it does feel that way sometimes. It seems like some people are just looking to be offended 😦
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I’m glad you’ve gotten the diagnosis sorted.
That’s bizarre that you got that kind of reaction on Facebook. The zoo has the wheelchair on hand anyway, so why charge more than a token amount for someone with a disability to use it?
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Yeah, people are weird about the things they wig out about!
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Welcome officially to the “herd” nobody voluntarily chooses to join? EDS kind of sucks, but life gets much easier – barring a few jackasses who overcharge for wheelchairs, boo – once it’s “official.” You can back up your request for reasonable accommodations when idiots inevitably try to deny them. Do your homework on PT, too, since your new diagnosis likely will finally get it covered under insurance. Not many practitioners are good with zebras, but finding someone who is has made a significant dent in my coat hanger pain in particular, as has just allowing myself to use a cane and posture support/braces in public as needed. Official diagnosis also makes it harder to tell yourself you are faking it and deny needed self care to yourself.
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Yeah, I felt an odd mixture of relief to finally have a name to put to it all, but also kind of depressed that there is no cure or even a whole lot of treatments that I haven’t already tried.
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The internet brings out the fool in fools
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Ain’t that the truth!
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FB is a strange territory in itself, but some very angry and disagreeable people troll away in there. FB has become the opinion piñata- belt whoever says anything to see what comes out. Glad to hear the good bits.
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I like that – the opinion pinata.
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Thanks, it’s better in here because that is not usually the case 🙂
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Yeah, I find WordPress to be much more kind in general so far.
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What others say about us, approval or criticism or what we feel and say about us
Has nothing to do who with we are
What we think we are is not even close and what others think is not that important
Hard to live that way though
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Very true!
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