Monday, January 12, 2015

Happy new year!

Alright so I'm a little late on the happy new year thing, but in my defense I've been a bit busy. 

Also im getting a little tired of talking about myself, I mean there's only so much I can say before I bore you all to tears.

I had my 3 month follow up with my Neuro last week. I had been waiting patiently for the results of my gallium scan. Basically I had to shut it out of my brain for 3 months and try not to think about it. 
The results all came back normal, there was nothing on the scan that indicated any inflammation or anything troubling. 
The neuro said that the mouth glands sometimes don't show up well on the scan so he would like to do the lip biopsy just to be sure. I agreed with him, although the thought of taking a chunk out of my lip sounds a little less than appealing. 
I guess on the bright side he didn't opt for the eye lid biopsy. He said that would have given me a black eye for a few weeks. But I think I could have rocked it. 

If the lip biopsy comes back negative then I don't have Sjögren's syndrome either. 

If that is the case we will start weening off the imuran. He said he doesn't think staying on this drug forever is a good idea as in the long term it can cause cancer. He also said if this comes back negative he thinks all my symptoms are just a bad response to a viral infection I had. Which while this leaves me frustrated since I still do not have a definitive answer it isn't bad news so I remain hopeful. 

I then asked if I could get tattooed anytime in the future. He told me he thinks it will be fine as long as I don't go below the knee or on my hands. So I will take it! Now just to come up with money somehow. 

Overall things have been going pretty well. I've been practicing with the 4 prong cane, and hoping to master that by this summer so I can look a little less like 84 and more like myself! 

I've been working hard the last few weeks to lose the weight I gained back during Christmas. I've only lost about 13 pounds and I have a long way to go but im hoping with determination and help from friends I can accomplish my goals by summer. That may be wishful thinking but I have been doing a lot more walking and using my chair a lot less. 

Everytime I get frustrated with myself I think of what I couldn't do myself last year and I then am impressed with all the progress I have made. I seriously feel like all of you push me so hard even just by inviting me out. 
Last year it was so hard for me to get in and out of people's houses that I found myself only going out once or twice a week. And missing out on a lot of fun. 
This year I have been quite the busy bee! 
Some days I long for the times I spent in my bed with netflix! It's good to recoup, but not wallow. 

I gotta say this is my first winter with the skis on my walker. While this is a good idea for around the house, they really do glide across the snow! Ha Im just doing my best not to end up face first in a snow bank. There's been a few close calls, but overall im trying to stay upright :) 

I honestly try and start each day and think about the positive. Sometimes it works and sometimes it doesn't but I would rather be positive than laying in bed having a pity party. (And trust me sometimes that does happen) 
I really do have a lot to be thankful for, even though sometimes I feel pretty meh. 

Actually I'm doing my best to just laugh as much as possible, cry only when I need to and just live life the most positive way I see fit. 
2014 wasn't didn't start off as the best year, but I gotta tell you it ended pretty fabulous. Don't ever let anyone dull your sparkle! Keep shining, because as my good friend Keara always told me "what other people think of me is none of my business" and she's right.

There's always going to be some hater who doesn't love you for you. 
And you know what, that's alright. 
I have plenty of people that do love me for exactly who I am and those people hold the greatest spots inside my heart. 
And you all know exactly who you are! Love you more than you can ever know. 

On that sappy note, I will end this blog! 


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