domingo, 13 de enero de 2013
Ha! I´m an awful blogger! i cannot even remember i have this place going on....Happy New Year! The World did not end of course, so there are lots of plans and things to do. anyway...about:
Joint Hypermobility Syndrome.
My health has been going up and down for over 20 years, it is quite a long story and I might talk about it in bits. The thing is, after years and years of having chronic pain, sleeping problems, certain food intolerance, allergies, skin rashes and contact dermatitis, a hernia I was born with, back, knee and feet pain and other weird and strange phenomena, I went from one doc to the other, no one could tell me what was going on. Early last year I was diagnosed with Fibromyalgia, yep, it made sense since the symptoms are a 100% what I am experiencing, BUT....the big big huge enormous BUT was that something felt odd... I was not completely suuuuure they got it right....I found several support groups on FB, and after a few months, an amazing person, posted something about people being wrongly diagnosed with Fibro when what they really have is Joint Hypermobility Syndrome or Ehler-Danlos Syndrome..... I...curious as I am went straight to read and devour any info about it. The more I read... the more I realized: This is it!! THIS IS IT!!! I went to see a physiotherapist who told me I was absolutely right. I asked a new general practitioner who told me it was very common for people to go through all this long process trying to find what is happening to them, going from one doc to the other and even being called nuts, crazy, somatic...you name it. And that none of them wanted to see the whole thing but parts of it. He sent me to a Rheumatologist, will see him in February. I´m not being treated for any pain at all but at least I understand that my weird looking fingers are not normal at all or that I’m an alien like my dad used to say to me, and I understand WHY I cannot play guitar or bass or piano or recorder without my fingers locking in strange positions, I became quite good at recorder and I might have had a good future as a bass player but....nah, guitar chords were a real pain!!. I cannot even start at what symptoms I have, so many, I will later on tell you about it and will share some useful info I’ve found in the past 6 months. I started asking questions to my family, and voilá! Mom, Grandma, a brother, my daughter, a couple of uncles or even all of them (I will ask later on when I have a full diagnosis) have symptoms as well. I was relieved that I could finally know what was going on, but then...they say it has no cure, it is genetic. Of course, this does not mean I do not have fibro; I have it as a result of having JHS, to top it all with a lovely cherry. So right now, I’m waiting, learning my own body language, learning how much is too much and how to help myself. Waiting for that appointment so we can start working on this to improve the quality of my life because to be honest...I learned to live with pain and ignore most of it but it increases over time and sometimes, I have a hard time dealing with it. My hands and fingers hurt horribly so I got depressed and did not want to draw at all. Even holding a camera is difficult after a few minutes. But I won’t give up, and even though I made three drawings last year, this year seems to hold a few surprises when it comes to art. I´m sketching a lot, making one sketch a day, sometimes I cannot post them day by day but still I make them and I can post a bunch with dates later on. I NEED to see that Rheumatologist so I can talk to him about silver ring splints for my fingers, know what exercises I can try, possible medication for those days when I feel like staying in bed for an eternity. I want my life back! But you know...that life is over, I can start a new one, I’m not afraid. Well, sometimes I am, but life is a precious gift and I won’t waste it!
Here is some *Basic* yes...basic info on JHS and Ehler-Danlos: Hypermobility Type. Clicky Clicky
I will post the sketches i have so far in a couple of days, i have lots of work to do, but just in case you are really reading this, here is one:
Aaaaaaaaand! I never posted the link to the album i recorded my voice for, yes, i also sing! the project is in spanish, an indie project called Motel Asimov, it was a great experience and i feel i could collaborate a lot not only with my vocals but with ideas for backing vocals as well and some corrections for some lyrics, hope you enjoy it, please let me know what you think if you stumble on this blog and read everything down to this very point:
Motel Asimov ( click it! )
My personal Favorites: Polaristel, Es lo que hay, Mapas Estelares <3, Cuando finalmente Suceda.