Thursday, March 28, 2013

For the past week or so I've been laying around feeling groggy and sore. Had another MRI for my pituitary last week and then an ultrasound for my thyroid two days ago. Not sure of the results yet but I should find out next visit to the Endocrinologist... so that is about three months I believe.

EXCITING NEWS! I finally was able to concentrate enough to make a video AND edit it all (both parts) so I'm happy about that. I always feel like I'm never doing enough when it comes to videos... even now when I'm making them fairly regularly. I guess I'm just trying to push myself more than I really have to in fear that if I don't push a bit I'll end up going a week or more without posting again. I hated myself a bit more each day that went by knowing I should have tried to do -something- even if it was off camera. I guess I feel selfish crafting on my own these days when I know how excited everyone gets when I share things. lol.

So overall not much is going on other than that... though one pretty epic thing happened. Those of you here follow me on youtube most likely so you already know about my little "spat" with someone who commented the other day. If you don't it sort of went like this:

THEM: good video but you talk too slow and have fat hands

ME: I'm sick, grasping words is difficult so I talk slower. Fat hands, I have an illness for that as well. Thanks.

THEM: Should have had someone else make the video for you then. (other stuff was said as well but that didn't matter to me)

ME: uwehrouh4touh3oigubhokvnowhjrgeihj-youtube rant-4hehef

Never in my life... Never. I face-palmed so hard my forehead still burns.

"You suck... but your ideas are great! OHOH! I KNOW! Get someone to do them for you while you lay back and continue to be the slow talking, fat handed vegetable that you really are."


Thursday, October 11, 2012

Random Update...

Well, I've been MIA on this blog so I figured I'd do a small update for the handful of those who actually read this one-

BACKSTORY: I've been feeling awful ever since a week or so ago right around the end of the last contest I hosted. I had my boyfriend help me with the picking since I couldn't sit at the computer for very long to actually watch all of the videos in depth and give them the attention they deserved so he looked for the winner(s) this time around. Usually he helps me choose but this time I left it up to him and then approved at the end.

This was an okay decision by me, after all, my subscribers understand I am sick and sometimes need to step back and take care of myself- most of them understand this anyway. I regret to say that I was tag teamed by two of the most unsympathetic people who were not only just in cahoots with one another but were also family. Now, I'm all for being supportive of your family but not at the cost of harassing someone who had done nothing to them.

So my boyfriend went through the contest and chose the people who had the best entries. I went over with him watching as much as I could while laying across the room on the couch just to make sure nothing was being missed and approved of the decisions. (Hell, Even when I had the lumbar puncture and couldn't sit up right I had him help me. Anyone who remembers that far back may recall that I laid down on the floor beside the computer as he read comment/questions to me and typed back my answers since I couldn't sit up right. He helps me out- it's just how it is.)

Fast forward to the winner announcement which I wrote out silently since I was feeling too sick to actually put on a happy face and talk- It just so happened the best craft entrant was also sick and announced that little tidbit in her video... so wouldn't you know that the mother daughter tag team accused me of playing on sympathies and picking the winner based off of "a cough and a sneeze" and such. The mother then went on a tangent to say clearly her daughter had the best entry and should have won the contest.


That's all I can say on that matter.


As for me  I have been trying my hardest to get my "new" art room done. My birthday is in about a week and I'm really hoping to have my furniture in there by then. I know it won't be decorated with all of my quirky touches but if I can at least have it functional enough for filming and getting back to my videos that would be good enough for me. It seems the more I work in there the worse I feel which is of course the curse of fibromyalgia- which is impacted by the curse of me which is that I'm stubborn and won't let a little pain get me down...

Even if it's like I got hit by a mack truck and the driver swore he saw a twenty dollar bill on the side of the road and backed up to check just to realize it was only his imagination and then kept on going never realizing it was the third time he ran me over kind of pain.

Happy Birthday to me.

Saturday, May 12, 2012

Finally had the concentration to re-do my Youtube Channel banner.

I worked for hours on it and made the background up myself... overall I really like it. I think it's much better organized and consists of more crisp/clear images- ever since I got Gimp (free program like photoshop) my editing skills have been pretty pimped out so it's working well with the new camera which takes awesome quality photographs.

Anyway- enough boasting about my awesome skillz... I really hope you guys like the new banner- I think it will help direct you to where you want to be much more quickly and efficiently which is always a good thing.
As for what this blog is truly about... I'm still feeling a bit off but I'm getting a new CPAP mask soon so I can finally sleep again. Being sick/hurting hasn't been an issue lately since my new medicine for the fibromyalgia... now all I really need is a few good nights of sleep and I should be ready to do a lot more videos and activities. I'm actually pretty excited and optimistic. ^_^

Friday, March 23, 2012

New Diagnosis

Well, yesterday (March 22, 2012) I ended up going to my Rheumatologist again. He ran tests to find out if my pain was from inflammation... and since it wasn't I apparently have Fibromyalgia.

This was a pretty awful thing to find out... not because it's just not a fun disease but because my boyfriends mother has it as well. He watched her suffer from it for years and knowing I could get as bad (or worse) than she did is pretty hard on him. I'm optimistic the medicine my doctor prescribed will help me. Apparently cymbalta (that anti-depressant medicine) is also used to help block nerve transmissions that fibromyalgia patients have. It's not "true" pain as in there is no inflammation linked to it... it's just like your brain is sending out all of these signals saying,"Hey, you're in pain." even if there is no real cause of it. This sounds accurate to what I've been dealing with but knowing boyfriends mom had it made me really not want this diagnosis... but it is what it is.

So... just thought I'd give a small update. I'm not going to rant much because this is just the beginning. I hope to come back soon enough saying,"HEY! THE MEDICINE IS WORKING AND I JUST POSTED TWELVE NEW TUTORIALS THIS WEEK!" but I'm probably dreaming.

One day at a time.

Friday, March 16, 2012

No... I haven't forgotten about this blog quite yet. =P

So, everything has been a mess lately. Our water heater busted about a week and a half ago... and while the plumber was here we asked him what this mysterious hissing was in our laundry room- a few hundred dollars later we had a hole in our washroom and a demolition crew in our home.

Apparently the washer hot line was leaking into the wall (small spray) but it was enough to saturate the inner wall... and leak down the floor and what not... so they ripped the wall up and our floor... which lead to the kitchen... so everything is in disarray at this point. Thankfully we have insurance so this will all be covered. In the end we get new floors and a new coat of paint... so I guess in a sense it's pretty cool even if we have to live with our kitchen being makeshift for about a month. What color should I pick? Haha.

Anyway... that was just a quick update on life and why I've been idle but now on to what this blog is truly about.

Today I saw a rheumatologist as many of you have suggested. I was unsure about it but they seemed to understand my situation. The nurse who took my blood pressure was a sweetheart. She actually helped me fill out my forms because I can't really write lately... even signing my name is becoming difficult. My hands/arms are just so rigid that cursive is a joke... but even regular writing is becoming quite comical. It's sad how hearing the questions was so much harder than reading them. Both I and the boyfriend were on the verge of tears as I went on about how things were.

(No, I'm not making this emo self pity party time- it's just not a good situation. I am hoping to start feeling better because I'm truly sick of this sort of pathetic lifestyle. I used to be self sufficient and I want to get back to that somewhat.)

So... the gist of the visit was that he is not giving me a definite diagnosis (which I like, it means he isn't a quack IMO) so instead he is running his own blood tests and is seeing me back next week. Both the practitioner and he believe it is Fibromyalgia but as I said they want to confirm with some tests. I had a few things tested back in September (which he said were abnormal signifying fibro) but he wanted a current reading which is a good sign. Not really looking to be drugged up unless need be, you know?

Anyway, we JUST made it to the hospital where I get my blood drawn. The tech there was about 20something and had a "I love vampires" pin on his name badge lanyard... I had to be a cheese and say,"The pin is oddly appropriate." he smiled and said his colleagues also liked it. I guess drawing blood all day makes it a fun talking point. If I were a blood tech I'd probably be insane and go in faux blood covered clothing and blame it on a bad stick every time. (Then I'd get fired, but it would be an awesome story.)

So... we were walking out and they had already closed up shop. I was the last one of the day which was awesome timing on my part. Went to Rite-Aid to pick up my medicine(s) for other issues and some bandages- I got some Mickey Mouse ones for my 'blood test battle wounds' since I figured they might make me feel less bad about getting stuck every month or so.

"Yes. I got Mickey Mouse Band-Aids. Don't judge me."


Overall today was okay. I'm still missing working on art projects but I just can't focus long enough to do anything... so instead I've been trying to piddle around and organize my supplies. It sort of makes me sad to see them and have a million ideas on what to do with them and then not have the energy to follow through but I've high hopes this new doctor might be able to help me cope and get back to some sense of normalcy. I'd really like semi-normal and might even settle for mediocre at this point.

If I would have started youtube about 6-7 years ago I'd probably post 20 tutorials a day... I had so much hyperactive energy that it was insane. I feel like I'm letting more than myself down with having followers which is making everything a bit more difficult but it's nice to know most of you are supportive (the majority are) and that helps me cope with not being able to do much in the video department. One thing I never let up on is the comments though. I'm still able to get to all of you which is awesome... it's getting a bit more difficult lately but I can still manage for the most part.

Okay so... I guess that's about it. I'll update again once I get to see him again.

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.