Monday, December 31, 2018

Happy New Year!

𛰐Happy (almost) New Year! I am kind of glad we are almost at a new year, 2019 I sure pray is a little better than 2018 as far as getting answers to these headaches. I feel like 2018 was the year of patience (which is really hard when you really don't feel that great!).

Other than really frustrating medical stuff I can't say the year was all bad, I definitely had plenty of good to, even if sometimes just little things.  I was able to do the humira study in CA and finish that which has helped quite a bit with the spine-nerve (bladder, and leg) irritation issues.
 It's been nice having mostly better nights in that regard. There are still occasional nights I wake up a lot but from this issue but no where near what it was and not every night.
 I really like the Rheumatologist my PCP got on board for taking this drug over (post Dr.Polgreen's study) and while he is overseas on a mission trip I am now seeing 1 of his partners who also happens to be a dr I saw in HS so 1 more dr who knew me some pre-MPS dx that now knows that it is.
Once my Rheumatologist comes back i'll likely switch back to him but this new/old one is very nice to.

National Institutes of Health - Sangamo
I had the opportunity last winter/early spring to speak at the NIH (Nat'l Institute of Health) for Sangamo which was definetly one of the neatest speaking opportunities I've had (I've done a few for various Pharma/Biotech and a couple patient mtgs/Conf's).  - I have always been a bit fascinated with the NIH and was just neat to meet the Director and so many others there who make the place (which is HUGE!) run! Although I am not doing Sangamo's gene editing study I am glad I had the opportunities I did to speak at their headquarters a few mo's before this NIH gig and then to speak at the NIH with their CEO and a few other researchers.

New/old Infusion
My infusion center which was somewhat new at the start of last year (I think I'd been there about 4-6mo) has con't to go really well. I love my primary nurse and the back up and other nurses are very nice as well. Sure if I didn't have to go every week it would be oddly nice but since I do it's nice that a team I like. Also nice that my PCP is on-site (same bldng) if we ever needed her.
The work I do..
I con't to work for the same foundation (Gene Spotlight) and thankful every day for this. Yes, there are many reasons why I am grateful for getting to work for this foundation but above all the getting to attend mtngs and have a closer view in to what's going on for research for my disorder and for families with my disorder so I can hopefully con't to help other families is AWESOME!
 I try to never take this opportunity for granted as I absolutely love what I get to do and getting to help others while also being honest it helps me to (both knowing what's going on for research and studies but also what may be coming for possible treatments).
 It's been 6 yrs I think and I hope I get another 6+ years of the same!

So what do I hope (pray?!?) for 2019??
Honestly I pray 2019 brings finnnaalllyyyyy a fix for this shunts - a new shunt, a shunt revision... SOMETHING!!!! I don't know what else to say but that's what I wish and pray for.
I pray to 2019 con'ts to bring stability for the heart stuff, that the 1 heart valve stays stable and that I as a whole can sometimes just be a better communicator (just in regards to what I am feeling to my drs.).]
   I also hope the rest of my team whom I really like cont's to stay in their practices and no one moves. I dislike change and I really like the majority of my team. =) I also get my new glasses in the next few days (if they ever come in, I suppose due to the holidays but the arrival date keeps getting pushed back. Weds now maaybbeee). Still as slightly impatient as I feel (I know silly)  I'd say that looking fwd to seeing better is not to bad a way to send out the new year - being able to see better, even if the changes are from an issue that's ever so frustrating! Maybe silly but I like getting new glasses (I like mine but has been a few years). Sometimes it's just the small things and well being able to see easier will be nice!
        Tomorrow, NY Day, am picking up Zander and mtng some of my family and my other nephew + his Mom to go bowling. I bowl in the most crazy way (really hard to hold the ball a normal way to throw it) but should be fun!
I pray each of you reading this has a good 2019 as well! To God be the glory that we get another year. Having lost so many friends I try to never take each day for granted (I am not perfect at this).