I'm 30ish years old. I have a wide range of interests that sometimes seem to contradict each other and joints that don't want to stay together. Don't expect this mess to make any sense, because if it catches my eye it gets posted....oooh SHINY!

Posts Tagged: Ehlers Danlos Syndrome

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I’ve gotten a job selling articles on the internet. Pretty sweet in that I can do everything at home. I haven’t been able to face how hard it is to get out and go to work. I still have my job at the vet clinic, but it is so difficult to get there sometimes. Between the latest pain flare and being sick with some kind of mutant cold/sinus bug, I haven’t made it in over a week. The articles have been a great pick-me-up because I feel like less of a drain on our resources since I am bringing in more cash. The frustrating thing is the pain is such a struggle and sitting up causes my POTs to rear its head. I felt pretty silly when after a week of weird dizzy spells I finally figured out it was just the act of sitting up instead of reclining that was triggering my spells. Why is it so frustrating? By now I should understand that my body doesn’t work properly, but I still feel like I should be able to do more…I mean really it shouldn’t be difficult to sit up and type. I try to pace myself and get up and move, but crud when sometimes it sets in within 5 minutes what do I do? Bah, it doesn’t matter in the greater scheme of things because I meet my deadlines and my articles typically do not need revisions. I just would like to feel like my “old” normal…I can’t let go of it. Hell, I would just like to get back half of what I used to be…I know it won’t happen.
I’m lucky though. People in my life get it. They don’t doubt me and are the ones trying to get me to relax and slow down. The other day my mother-in-law was over because we were having a mini bday for my youngest stepdaughter. I was limping around getting things organized, shepherding the dogs in/out of the house, and keeping things to a low roar. She was staring at me with a little smile on her face and suddenly blurted out, “Do you know how exceptional you are?” I kind of just stopped and stuttered then hugged her. It had been such a hard day and I was trying to hide just how bad the pain was because I had forgotten my meds (I couldn’t take them anyway because they would have knocked me out) It meant so much to me to realize she understood how hard I try.

My oldest stepdaughter has issued a challenge to me and I…I accepted so the pressure is on. She wants me to finish my book and start submitting it to publishers by the end of 2013. I have to get to work!

The day after the bday party I was laying in bed recovering and the oldest came in and laid her head on my shoulder. She kind of shifted her head back and forth and then commented on how my joints sounded like gel filled with broken glass and said it didn’t sound like it would feel good. I didn’t even notice that when she was moving her head it was causing my shoulder to subluxate…my other joints hurt so much worse that I didn’t feel it until I focused on what she was doing. She then asked me the “why can’t they fix you?” question and I had to tell her that they just didn’t really understand my problem. She frowned at me and said that wasn’t fair. I grinned and said “you’re telling me.” and then changed the subject to what they were going to be doing with their mum for spring break. I felt like crap and if I had delved into the topic of my problem I would have gotten bitter or cried neither of which are things that I like to do in front of the kids.

Cobra Spit for Pain!

I think this just got approved for OTC use in America. I had heard that cobra venom had pain relieving properties. Has anybody used it for pain? Did it work?

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My sister called me today. She only calls me when she has vet/animal health questions. Today, I am pretty sure her dog had a seizure…I told her to take Nana to the vet. She asked me how I was…commenting on how I must be better, because my voice was ‘brighter’. I agreed and said the medicine was helping with the pain and increasing my mental energy. I then said I was frustrated because I discovered that I wasn’t physically better even though I was taking things very, very slowly. She told me that I just wasn’t doing it right. I got kind of ticked off at her. She only wants to hear me say I am feeling better and not listen to my very real concerns about not being able to get anything back physically. I think she is in denial…I’m pretty sure she has this too, maybe not as serious as I am…but yeah, she has it too and doesn’t want to admit that if I am only getting worse that means she will too. While, I can understand that mentality it makes it really hard for me to talk to her because I can’t vent. At least, I have tumblr!

Hats Off Gentlemen It's Adequate

Hey guys! This is a demo of a song by a group called Hats Off Gentlemen It’s Adequate called Me Again. It is a work in progress. The cool thing is that several of the members are affected with Ehlers-Danlos and work hard to raise awareness of Ehlers Danlos in the UK. I ‘ran’ into the lead singer Malcolm on a support page on Facebook (I know, I know Facebook is the devil) His wife plays flute. Their music has a cool bluesy feel to it. They did a cover of Along the Watchtower by Jimi Hendrix that is sublime and a cover of Sweet Child of Mine by Guns N Roses that literally gives me chills. Check them out through this link and on Youtube when you get a chance! “While I Still Can” is another original that is inspired by the struggle with chronic illness.

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Maxim posted a partial retraction to their bone-headed article. It is now titled 4 Diseases We Wouldn’t Mind Having. They are apparently horrified about how badly they misrepresented EDS and plan to do something to help shed light on the syndrome. Eugene Wilson the head of The Center for Ehlers Danlos Alliance will be speaking with them directly early next week on how they can raise awareness. It is still sad that they didn’t retract the whole article and that people affected by those other illnesses don’t have such a strong herd to fight for what is right and make the asses realize just how big of asses they are, but it is a step and maybe they will think a little more before they write something again. Research at least.
GO ZEBRAS!!

This article is a piece of shit!

My husband gave me the above title for this article. Maxim thinks they are very clever and have posted an article called “5 Diseases We Wouldn’t Mind Having”. They include Ehlers-Danlos Syndrome as a “Party Trick” I am so utterly pissed that I am literally seeing red and weeping at the same time. They take devastating diseases and syndromes and trivialize them and the writing isn’t even that funny. I know I shouldn’t be surprised that the crap that is Maxim would post this drivel, but come on couldn’t they have done a bit more research? I’m sorry I definitely mind having EDS. I have chronic pain, constant injuries, digestive issues, the list could go on…There is no end to this party except death.