Friday, January 27, 2012

Clearing my head...

I spent about an hour deleting things off of the Sony cam. I deleted things casually as I went along and/or made mistakes but the majority of my work has been being archived on it since I bought it a few months ago. It took a while to delete everything since I couldn't for the life of me find the "Delete all" option but it was good. I felt good deleting things manually. It was almost therapeutic seeing records/memories wipe away.

I saved a few pictures here and there but the bulk of it was just random bracelet stuff. Honestly, doing these bracelets lately has made me realize how my health and talents are trying to play hide and seek with me. I really wish I could just figure out where my energy/health is hiding... I'd love to feel good again and be able to get really excited about making stuff (again) but lately making things has just been a way to cope.

Doing all this artsy fartsy busywork with my hands keeps my mind off how I feel, how little sleep I got, etc. I guess in a way making things and putting all of my energy towards 'creating' leaves me less time to feel sorry for myself. I guess it's working out for me but sometimes I wish I could let myself just slip in to some self pity. It's difficult making yourself believe everything is fine and sometimes you need to just sit down and cry like you're on a deserted island in the pacific somewhere and no one is around to hear you blubber like a toddler.

I've noticed since my boyfriend moved in nearly two years ago I've only cried about twice. Impressive for me. I used to cry at simple things like commercials that were sweet... so only bawling twice in two years is quite the improvement.

It seems that lately I try to be stronger now so he won't feel sorry for me... I think it may be making me a bit more crazy though. Crazy and art go hand in hand luckily- if anything it may be making me a bit more creative. Here's hoping.


  1. I'm reading a book called The Highly Sensitive Person by Elaine N. Aron. I know you said you don't read much, but maybe you could find an audio book maybe? I think it explains a lot of why its not just our emotions that are "oversensitive", our physical and mental capacity is extremely sensitive as well. And I'm slowly learning that even tho, we're in the lesser 20% of the population, we're extremely important: we're the teachers, advisors, preachers, artists, the thinkers etc. I think that makes us a rare and special breed :D Crying at sappy shit doesn't make us weaker, just means we're moved deeply and nothing wrong with that :)

  2. Hello. I saw your video on this after watching a few of your bracelet ones. I have had a rare and unique autoimmune disease for going on 20 years now. The first handful of years were the roughest because I had to find out what was wrong with me as well as learn to deal with such horrible symptoms after being very healthy the first 20 years of my life. I do not know if you are seeing a specialist or not, but I would highly reccomend it if you are not, as they are much more knowledgeable than your family doctor in their respective areas. Though I'd think you were if diagnosed with HH.

    Here's the thing. If you have a doctor who specializes in autoimmune disorders (rheumatlolgist) and I don't know if the rheum or endo would deal with the HH, and one who will listen to you and not dump you into the giant basket of "sufferers", so much of what you have going on can be helped in huge ways. Believe me, as my immune system just loves to go crazy over me (haha), I'm allergic to or extremely sensitive to most medications used yo treat the various problems, and though it has taken a few years to find the right balance, I am now able to live a close enough to normal life where my pain is normally within tolerable boundaries.

    I do not know what tests you have had, and it is none of my business. But I do know that there are some very probable causes for much of what you have mentioned that with a few lifestyle tweaks you could potentialy see dramatic differences in your quality of life. I don't know if I'm going to be given the option of this remaining private or if it will autopost so I am not going to write much more as this is a side of myself that I do not share with very many people.

    It is true, there are no cures right now. Yes, we have to deal with things many people don't understand. But we can choose to be happy and with the right help we can tell many of the symptoms to piss off for the majority of the time. Flare ups do come a calling, of course. Don't give up and don't just accept that you have to be miserable. Because you don't. You just have to find the right people to help you and then make peace with it all. Anybody can sing or dance, but to be able to do so after overcoming something that wants to stop you from doing so, well that just makes it all the sweeter when you don't just sing or dance, you do all of that and fly too.

    I don't know you, but I believe you can fly. I hope that you believe it too, and if you don't already I hope this is the year you learn to.

    1. Yeah, I'm seeing a few specialists actually. Nuerologist who found the pituitary cyst, endocrinologist who had found the autoimmune hypothyroidism and then I've been to a gastro as well as infectious disease because of weird rashes I get... which then sent me to a dermatologist and now I'm on a week of antifungals for some weird thing I've never even heard of... but yeah.

      I'm trying to find help but it seems even my specialists are at a loss. My primary is pretty careless when it comes to my health and unfortunately I need to go through her to get to the specialists. I'm thinking there may be something wrong with my spleen/liver/whatever is on the left side of my body now since I've been having really bad pain... so it's just a mess. Maybe I'll sort it all out and be able to get well but as for right now it's all stagnant.

    2. Sounds like fun. Sarcasm intended. It sounds quite familiar really. Have you seen s rheumatologist? They are who tend to deal with autoimmune and everything you've listed screams it. Rashes included. Rashes and I are very good friends. Please do not take me wrong, I know how frustrating it is not to know what id wrong with you and yo have daily pain that is beyond the point of imaginable. That is why I couldn't stop myself from contacting you. Go to some forums and see who other people reccomend as far as an understanding but highly motivated rheumatologist is in your area and make your doc send you there. I went through 2 other rheums, 2 neuros, a gastro, 2 allergen specialists, and a Dermo, before finding my current doctor. I've had a couple of sugeries too,including a hysterectomy. Oh and let's not forget the painspecialists. They were a scary lot which I will never put myself through again. Nothing against others of course. LoL.

      If your docs can give you answers and treatment plans that are working, find one who can. Maybe you do have. Something they haven't seen, but someone has. Not tomention that thyroid diagnosis can cause a lot of problems like you are having if not managed right. While there is no cure for autoimmune disorders, there is a lot of things that make a world of difference. So please do not give up and do not accept that you must live in so much pain.

      In the short term for your carpel tunnel, try not to do things that aggrivate it for a few weeks like typing and texting, and then look up stretches for it and try them. Get your boyfriend to help you flare your hands open as well as kind of squish rub from just above your elbow down to the tips of your fingers. You can look up about trigger points and accupressure and find tips/techniques that I found to make a huge difference. You may already know these things, I'm just trying to share a few things that might help with the pain a little for now so that you can enjoy your crafts, as I know that makes a huge difference in spirit. Do you have any food allergy or sensativities that you know of? I have found food to play huge roles. And with the thyroid have you had your vitamin d tested?

      Wishing you a wonderful week and a most loving valentine's,

    3. Yeah, I've been wanting to see a rheumatologist for some time now. I might ask when I go to my doctors appointment but right now the biggest pain is in my abdomen... so I'm not sure what that's about. When I had my ultrasound for my gallbladder they said my spleen was enlarged but they didn't make anything of it... but now that the painful gallbladder is out I can pinpoint the pain to the left side now. I'm going to try getting some help... I have no clue what it could be but this seems priority right now since it is the most painful thing going on.

      When it's all checked I think I'll get on her about a rhuem visit so I can have someone who is a bit more understanding of my condition. As good as my endocrinologist is she's more of a 'diabetes' doctor than an autoimmune specialist.

      If you'd send an email to my beyondbracelets gmail account then I can try to keep in touch if you are interested.

      Anyway... thank you so much. I am looking forward to spending Valentines day with the boyfriend. He's dead set on trying to make me home made truffles... he's adorable. lol. Hope you have a nice day as well. =3