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.

Tuesday, January 24, 2012

Introduction To This Blog

Some people that follow my 'BeyondBracelets' YouTube page closely may already be aware that I am not exactly the most healthy person in the world.

The majority of my videos showcase my raspy, near death voice that is usually huffy and pretty messed up overall. You may have even heard me point it out and/or mention that I feel badly. Sometimes I will explain my "middle of the video lapse of thoughts" as my not feeling well or not having been able to sleep- both of those things seem to hang over my head all of the time.

FUN FACT: I mute my videos when answering comments because I can tell how bad I felt during the video by hearing my voice.

Long story short, I have a video posted showing a few pictures of myself prior to getting very sick and I get messages on it from time to time. Some nice few wish me well and tell me to feel better soon. It's a nice thought but in a sense those messages sadden me. While I don't have anything that is known to be killing me at a rapid rate I do have things that will not be cured. I can continue to take medicine to keep it in check but I will never get rid of it.

Anyway, this blog idea came up yesterday because someone asked if I could possibly blog about how I cope with my chronic illnesses since they too were in a similar situation... so I thought it over and then figured I could give it a try.

☼ Question: Why did you title it 'Misery Loves Company' if you aren't looking for sympathy?

☼ Answer: I think it fits anyone with an autoimmune disease. Usually they do not come as a "one hit" deal they come in multiples- hence why I used the Misery Loves Company title for this blog. Plus... it's an awesome song by an awesome band.

Other people have also mentioned to me that they are also sick or have something wrong emotionally or physically and pointed out that they use crafting and art as an escape or 'coping device' to combat whatever may be wrong with them or in their lives. I won't mention names out of respect- but also because I couldn't remember them if I tried. (There's just too many of you to remember now.)

So... I guess that's the "Why I Started" this blog. I will try to keep up with it as best I can and if you are interested in hearing about the running joke which is my life at times then feel free to follow. I'll try to keep this about 'health' in general but I may throw in some random stuff that happens if I feel like it.

Had I been writing this blog before new years it would have went something like this...

Hey everyone, just went to the hospital because a cyst on one of my ovaries popped. I couldn't even stand it hurt so bad so I went and as soon as I got there the pain was completely gone making me look like a complete moron.

(two days later)

Hey everyone, just went to the hospital again because my ear infection was so bad. I couldn't go to my primary doctor because it is new years day and they aren't in their offices so I had no choice but to go back to the hospital which I just went to two days ago and made an ass out of myself in. Woo-hoo.

I think more eventful stuff happened but I don't remember 100% what... Maybe that's a good thing, though. Sometimes the days I don't remember turn out to be the best ones. ^_^

Oh, one last thing... since this is an intro I should probably let you know what sort of diseases run rampant through my system just so you can either (a) feel sorry for me or (b) poke at me with a large stick and ask if I can feel it.

1. Hashimoto's Hypothyroidism - This is like hypothyroidism but not fully. It's an autoimmune version of it meaning my body cells are viewing my own tissue (in this case my thyroid) as an enemy and they are slowly trying to kill it off.

(Antibodies attack my thyroid sort of like when an organ transfer is being rejected- only this organ was mine all along.)

2. PCOS (Polycystic Ovarian Disease) - This is just a fancy name for "My hormones are out of whack and my ovaries are getting pwnd because of it." PCOS can cause pain and stuff if you aren't taking birth control so luckily I am taking it to balance me out. As my gyno keeps reminding me it would go away if I stopped being so fat... but that's not so easy when I have problems keeping me this way. (Actual problems, not Twinkie Magnetism.)

3. Irritable Bowel Syndrome - I'll do the favor of not linking this one. I'll just phrase it as "I am constantly bloated and rushing to the bathroom."

(For the most part I can't eat without becoming very sick to my stomach so I limit myself to once a day because it is all I can handle. If I am going out somewhere I won't eat because it would wreck me for the entire day. Most of the time I can eat a single skittle and it would still get me sick.)

4. Carpal Tunnel - This is not that bad I guess, but it does bother me. It makes my 'bracelet making hobby' a bit difficult as well as holding small stuff- sometimes I even drop larger stuff like cups and things like that because my fingers get pretty numb so I can't feel whatever it is I may be holding.

(This is extremely fun when I am in the kitchen cooking with my boyfriend. He asks me to cut something like a carrot and I have to do a finger count after every single chop since I can't feel.)

5. Chronic Headaches & Migraines - I'm going to assume you guys already know what this is so no link. This was what I originally went to my doctor for... then he did an MRI to check if my brain was okay. He ended up finding the next awesome discovery.

6. Pituitary Tumor (Possible Cushing's Syndrome)- This one is my newest addition to the list. Apparently I have a small tumor on my pituitary.

(This could be causing me to not be able to lose the jelly rolls but it hasn't fully been checked out yet. I had a test done a while back and it showed my "growth hormones" cortisol were elevated but not majorly so nothing came of it... but now after my MRI showed the tumor on my pituitary my doctors are looking further into it.)

7. Severe Sleep Apnea - This pretty much means I choke in my sleep and have lots of spots where I stop breathing. Before treatment I would wake up every 20 minutes to half hour like clockwork all through the night. Now I have a breathing mask for when I sleep but it still seems that I can't get a full night sleep even with sleeping medications. This contributes to me sounded out of it in videos so if you're ever wondering why I sound like I haven't slept in months in most videos then it's probably due to this.

I am not sure what else I could have. I am being treated for what I already have it the treatment seems to not be helping at all. My eye sight is terrible lately and I can't seem to figure out why. I want to say something is going on but I really can't say what. I'm pretty much just blind and anything I touch feels "numb" from the carpal tunnel. It's pretty crappy but I still get by. Sucks not being able to touch my boyfriend and actually feel him though. It seems like it's carpal tunnel but the pain and numbness is pretty much full body. I still have a long way to go until I find out how to feel good again but until then I'd settle for feeling mediocre at this point.

Okay well... now that I've thrown my personal life out there I am bracing myself for the aftermath of positivity as well as negativity. I'm sure there will be someone out there who finds this inspiring and comforting which is great... but there will also be someone who will use this to try hurting my feelings.

Truth is I don't really care if someone uses this stuff against me... I will let you know if you are trying to you should definitely go for the fat jokes. Those tend to be the most insulting thing to me since I usually eat like someone who would be underweight but yet I look like someone who can KO three large supreme pizzas and two quarts of icecream as a midnight snack and then still have room for a box of tastycakes filled with cheeze whiz.

You'll never look at tastycakes the same again. Trust me.