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.


  1. Hold on miss! Take your time, no pressure, we're fine without you. I mean, I'm a newbie to the whole bracelet world so your break is giving me time to practice so that when you're back I can kind of follow up :)

    I have a chronic desease as well and was also hyperactive back in the day and now there are days when I can hardly find the courage to get out of bed. But we'll make it through this, you'll see better times are just about to come! It's all cyclical I guess, this is a bad time but it's got to end at some point and then it will all get better. From my experience the only thing that helps me is knowing that this crappy time will come to an end sooner or later, one way or another. Things just can't remain like this forever.

    You've got a diagnosis now, let's hope the meds do their magic and you'll start to feel much better really soon :)

    I won't wish you the best, I'm only just going to wish you what you do deserve: to slowly start feeling better and go back to normal (as normal as we can get, at least).

    Much courage & warm thoughts

    1. I am actually feeling okay on the medicine three days in. I've completely lost my appetite (which isn't that good- I was only eating once a day as it was so now I'm barely picking) but it's fine. I'm sure it will be back as soon as my body adjusts to the new medicine.

      That aside... some of the pain seems to be gone. I've also been sleeping a lot better on it so that's another plus. I guess it's safe to say at this current point in time I actually feel relatively normal but even so I am still trying to take it easy. I don't want to push myself too far too fast and pay for it in the end so I'm just sort of catching up on some missed sleep and seeing if this progression continues- hopefully it will.

      Anyway... thank you for the message. It made me feel good seeing encouraging words this early in the morning. <3

    2. OMG, that's some amazing news, I'm so happy to read that!

      You're right, catch up on your sleep, relax, spend time with the boyfriend and it will all get even better in a few weeks :)

      Some meds can make your appetite completely disappear but it is just a matter of time till your body gets used to it, you're right, so don't worry, just take this as a little break for your stomach I know for me and most of my patients (I'm a nursing student) it normally takes three days, a week, maybe even too to get back to their normal eating routine but your appetite will soon be back, just make sure you drink your fluids!

      Thank you for sharing your experience with us, it is truly inspiring believe it or not cause you're a strong woman, many people suffer from just a flu or a broken arm and it's like the end of the world, you cope with everything with such dignity and I know you are in a difficult situation and things aren't easy at all. But there you are, sharing you art with us, your day to day, you're making it through it all so I say HURRAY for you, you go girl!

      Thank you very much for your answer, it made my made my day knowing you're doing better <3

  2. 3rd attempt to respond..darn Google. I found your tutorials while searching for a "purpose in life". I too have an autoimmune disease. Aside from severe fibromyalgia..the rest depends on which doctor you talk to. Lupus, MS, tested positive for Lyme, blood drawn 2 days ago to test for Myasthesia Gravis. Who knows. Pain and a host of other issues. Been on SSD for 3 years and it's depressing as all get out. I am in awe of your talent and want to thank you for giving of your time and expertise so selflessly. I truly understand how exhausting it must be as doing my laundry leaves me wiped out and hit by that mack truck. Thank you for teaching me how to make friendship distracts me from the pain. You are in my prayers for more good days than bad and somebody out in this great big world truly does understand. Blessings to you.

    1. Sometimes I get exhausted rolling out of bed so I completely understand that aspect of the fibromyalgia. The energy levels are so sporadic it's insane. I'm learning that lots of people use crafts to cope with their illness and it's sort of comforting to see that I am not alone... but at the same time it's sad to know so many people do the same.

      I just take it one day at a time and sharing it makes me feel a bit more energetic. I guess because the whole 'purpose' thing behind what I do.

      Thanks so much for your comment and I hope the best for you.