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.

21 comments:

  1. I won't feel sorry for you, but I will definitely be proud of you and your work. Enjoy the love around you, cause there is a lot more than you realize! =) <3

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    1. Yeah... There's enough 'sorry' around me so thank you so much for avoiding that. As for love... I think you're right.

      There's a few crazies that have put me down for random things but this whole 'YouTube' thing has made me a better person regardless of the good or bad from it. Honestly, I've met lots more nice people than I can count and It's definitely a great thing. I notice it gives me more motivation than I otherwise would have had just quietly doing my crafts alone.

      Anyway... the blog was a big enough rant... so I'll stop here. I will say thanks for the comment, though. <3

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  2. i'm writing this here, so it won't get lost in the video comments...i'm sorry you're so sick...i have lupus and RA, and i feel your pain (literally) i want to tell you to try and stay positive, keep your chin up, and all the other things that ppl tell us when we feel like crap...but we are trapped inside our sick bodies, inside our conditions, and it's hard for anyone to realize what it is like unless they are there themselves...so instead of offering more senitments, i'd like to offer my support and a shoulder to cry on (or an ear to b*tch to)...my name is ginger, and i am "hellzap0ppin" on youtube, in case you need someone who knows what it's like to talk to...take care =)

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    1. I'll always take supportive shoulders. =3

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  3. Have you tried taking fish oil for your carpal tunnel? I've never been to a doc, but I can easily say that I have it as well. 20 yrs of gaming (console+pc)/daily computer use since 1999 is definitely showing it's face to me these days, especially these past few months. I can't even close my hands in the mornings anymore. I take 3 fish oil capsules a day, and it really helps keep the pain away - in not just my wrists, but elbows, knuckles and knees as well. And helps my joints be less stiff, which in turn makes it soo much easier to stretch and exercise my fingers. It may help ease your joints a bit. Worth a try ;) - (If you do try it, try for 2-3 weeks before you give it up. And let me know it if works for you!)

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    1. Hm, I've tried fish oil a while back but it was the giant horse pills which were very hard for me to take. I've been meaning to try those very small ones that aren't quite so fishy and easier to swallow. I think I'll try them, thank you.

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    2. A lot of people get that gross taste because they don't drink enough water when they take the capsules. Try drinking 1-1/2 full glasses of water (or more, if you like). You don't have to chug it immediately, but drink it within 5 mins or so of taking the fish oil, it should help! I drink water and green tea all day long and I've never had a bad taste in the past 6 years. I really hope it helps you! :)

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    3. Ah, yeah... It's not so much the water. My throat is swollen and stuff from my thyroid issues and/or sleep apnea... so it makes it hard to swallow big things. The fish taste isn't that bad but I still plan on trying those that advertise as 'no aftertaste' just to try it. I think they are called mega-red or something?

      Anyway... thanks so much. I'll pick up a bottle next time I'm out. Maybe it will help. Here's hoping, anyway.

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  4. There. Following you on youtube, facebook, and now here...that sounded strangely stalker-like hehe...When I read all ur bio, likes, music, movies, etc I thought I had a twin in Delaware! You rock so much, Hon (and since I'm like you I guess I rock too, yay!) I wrote about having chronic daily headaches with [transformed] migraines and busy hands on youtube vid (lufbecky).

    I started making hemp necklaces about 5 years ago and have been trying all sorts of jewelry making since (love the polymer!)

    As said many times, you really are an inspiration to us "chronic pain suffering art nerds" so don't ever change!
    luf
    Becky

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    1. It's cool, I don't mind people who follow me and "stalk" in fact... it just makes me smile when people admit it and are open with the fact they enjoy me enough to follow me around. I 'stalk' my fair share of people as well and I'm proud of it. Of course I don't mean hiding in their bushes at night watching them sleep but it's perfectly okay to read or watch what they make available to everyone.

      Thanks so much for writing and good luck with your jewelry. I have been trying to get in to polymers as well... thinking of getting a toaster oven soon so I can continue it without having to take over the oven always.

      I'm glad you guys find me to be an inspiration but without everyone following me I probably wouldn't be so active here. Knowing that so many people follow and support me just makes me feel a little more energetic and excited about being 'active' on youtube and what not... so without everyone I probably wouldn't bother posting at all.

      It's funny... I never knew there were so many others out there who were dealing with such health trials... it's inspiring from my end as well... so I guess we'll just play inspiration ping-pong? ^_^

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  5. He entrado a tu blog y me gusta mucho tu honestidad. Te cuento que yo a mis 21 años y con 5 meses de embarazo fuí declarada como portadora de CUCI (COLITIS ULCERATIVA CRONICA INESPECIFICA) es una enfermedad autoinmune que me tuvo en pañales por 14 años con una diarrea de sangre constante.
    Consecuencia del tratamiento he sufrido 4 pancreatitis agudas, síndrome de Cushing, apnea del sueño, hipertensión, ovario poliquístico y migrañas constantes al punto que me dejaban prácticamente inconsciente.
    A mis 35 años decidí retomar mi vida y.... VIVIR! Me matriculé en la Universidad, empecé a asistir con pañales... hoy día a mis 45 años curso mi segunda Maestría, me he graduado con honores, soy profesora y laboro para el Ministerio de Educación en mi país, Costa Rica, me especialicé en Sexualidad, además poseo un grado académico en artesanía y aunque sigo enferma creo que mi actitud ha hecho que pueda disfrutar de la vida.
    Hace 10 años mi enfermedad me ha dado una trega y me siento muy bien.
    Creo que cuando se quiere se puede y admiro tu actitud.
    Te felicito y te mando muchas bendiciones desde Costa Rica

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    1. (Soy google traducir esta así que espero que tenga sentido)

      Lo lamento de veras que hayas tenido tan duro, pero eso demuestra que eres una persona muy fuerte. Estoy feliz de que usted ha sido capaz de tener éxito y empuje en los momentos difíciles ... Yo no te conozco pero puedo decir que estoy orgulloso de ti por ser capaz de superar las dificultades y hacer lo que sea necesario para el fin de hacer una vida para ti. Muchas personas han dicho que soy una inspiración para ellos, pero ya que usted fue a través de (lo que parece ser el infierno), y luego realmente sucedió con tantas cosas que pasan es un inspirating para mí. Gracias por escribir y te deseo lo mejor así ... la enfermedad puede dificultar las cosas, pero una vez que obtuvo lo que se propuso ganar te sientes como si son superman. Haha. ^ _ ^

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  6. Oh my, you & I have so much in common, I can honestly relate. I have Fibromyalgia & the lonnngggg list of comorbid conditions that go along with this "chronic disorder", PTSD, ADD, IBS-D, Major Depressive Disorder, anxiety, migraines & tension headaches, sleep apnea (hate the c-pap), Insomnia, bursitis in left hip due to scoliosis, Arthritis in lower back, degenerative disc disease PLUS carpal tunnel, eczema...The list just goes on & on. I'm only 35 & my 91 yr old grandmother gets around better than I do.
    I have come to find that with this Fibro diagnosis, there comes this awful stigma of I'm a hypochondriac, it's my depression (of course I'm depressed!) yadda, yadda, yadda. It has left me untrusting of the medical field & scared to open up to anyone about this for fear of what is being thought of me. I HATE this UNCURABLE crap that started making my life PURE hell only 3 years ago (actually since 2001 just thought it was stress) & has nearly left me incapacitated but as a mother of 4 from 17 yrs down to 1 yr, I must fight to be the best I can be for myself, my kids & my husband. Sorry, I kinda went on a venting rant here. All being said, I know a lot of how you're feeling & if u need to rant or talk, I'll be here for you & I am also in need of a friend that understands me & can validate my feelings when I start feeling like this is all in my head :( Take care, keep your head up & please stay in touch with me as you feel you can.
    I've been following you since last year when I 1st started making friendship bracelets. I always wanted to learn & I found your channel & went to TOWN! Because of you, I had an escape, distraction, my lil happy time when I'd give one to a cancer patient(6 yr old girl) from my church & watched her eyes light up, sent one 2 an old friend to let them know I still think of them. Thanks so very, very much for being YOU. <3 Kristin

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    1. Send a message over on YouTube if you can, I'll be more likely to keep up with you there. I'm quite forgetful but if I have messages to sift through on there with a name I'd probably be more likely to follow up with comments/messages.

      As for your issues with your health... that's sure a lot to deal with. I have no kids (thankfully not yet anyway) but I can imagine with four of them ranging from infant to teen I would just be a wreck. It's hard enough being sick without a husband and children... so much respect goes out to you for keeping up with it all and still having time to make some crafts.

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  7. wow, all that and you are so young. I have autoimmune disease to and I hate my meds. I have severe rheumatoid arthritis, osteoarthritis, degenerative disk disease, and pustular psoraiasis (spelling). I was on a prescribed vitamin called didrocal that gave me severe bone loss in my bottom jaw, so I'll probably loose all my teeth (yup 2% of people on the vitamin get the side effect) shit!
    So I here you for sure............just found you tonite and made my very first friendship bracelet for my granddaughter. I also love to knit and do bead work as well. Actually I love all crafts and recycling. My meds make me really sick, and like you I eat once a day. My prednisone causes major weight gain and I hate it.

    take care and happy crafting
    I used to own a craft store for ten years called Make It Snappy. The name came from the one hour photo lab we had.
    We used to say "Make It Snappy - Make It Yourself"

    laurie

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    1. That's some side effect for a medicine/vitamin. After that I'd hate medicine even more.

      I'm glad you're enjoying the videos and were able to make your grandbaby a bracelet from them.

      P.S. That's a cute name for a craft store

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  8. omg, each and every among the that and one is so younger. I have autoimmune disease to and I detest my meds. I have extreme rheumatoid joint disease, osteoarthritis, degenerative disc drive disease, along with pustular psoraiasis (spelling). I ended up being actually for a administered vitamin sometimes known since didrocal which gave me serious bone decrease in my bottom jaw, so I'll perhaps loose every one of the my teeth (yup 2% of people in regards to the supplement get the part effect) shit!
    So I correct here you for pretty sure............strictly found you tonite and additionally also made my first friendship wristband for my granddaughter. I also prefer to knit as well as do bead work and. In truth I really love every one of the crafts and also also recycling. My meds render me personally really sick, because well as like you I eat as shortly as a day. My prednisone causes immense weight benefit from and additionally I hate it.
    take care as well as interest and also additionally happy crafting
    I familiar with personal a create search for a decade labeled since Render It Snappy. The name came from the one hour photo laboratory you had.
    You familiar with say "Make It Snappy - Give It Yourself"

    CPAP

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    1. I'm very sorry to hear you have such issues from that vitamin. Side effects from medicines are awful. I'm glad you are enjoying the crafts though- I know personally that crafting is a great way to cope with feeling badly. I wish you the best of luck and thanks for the comment. <3

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  9. All I can tell you is that you are one special and precious individual from whom I have had such great pleasure learning! I absolutely love and appreciate your excellent, clear, and concise instruction with a great sense of humor and your willingness to be so open and real. For that, I totally commend you and am SO proud of you. I greatly appreciate you. Thank you.

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