Monday, March 6, 2017

(Cardiology, Neurosurgery, etc) Wonder when we'll figure it out..

Going to try to make this short - I know, stop laughing. =)


Cardiology I had the 48hr heart monitor which I mailed back the other day. Usually takes a wk or so to hear anything. I did have some symptoms during it and in general haven't been feeling all that great for the past few days or week or so so who knows. Between lightheaded episodes (but very odd), heart rate that's a little odd and the low-to-mid back stuff (irritation, radiating discomfort) topped now to with the CSF (Spinal fluid) leak in my low back from the LP Shunt seems like it's pretty much headed. That stinks a lot! Headaches still aren't as bad as they are sometimes, like when the shunts are completely not working but that leak definitely makes/made things much better!

Neurosurgery wise going off above, I seen my Neurosurgeon today at UW Children's and he is basically at a loss. I said to him the risks of doing more surgery with the LP Shunt may be real (and I know they are to an exent given the stenosis/narrowing and severe scarring) BUT that shunt location right now SUCKS! Now to the CSF leak from around that shunt being pretty well healed makes it all even worse.

I have thought a lot lately about this weird life I live, both normally and so abnormally abnormal. I watch or see people including really my own family, siblings especially going on about their lives, functioning normally, doing normal life things every day meanwhile most or many of my days are spent dealing with insurance stuff, endless medical stuff and all that goes with both of these. Shoot I even fully realize with having my Case Managers at Genzyme and at Dean I think I have it pretty decent compared to many. I think it's just the fact even with these 2 helping (and they do help a lot!) I still have to communicate with them, sort paperwork, deal with scheduling drs. appts., figuring out when f/ups are needed (today's Neurosurgery Appt? I have no idea in hindsight what the plan is other than Xray was done and he wanted to look at some prior surgery notes (for which I sorted through my binder of Neurosurgery Med records and sent this to him and to Dr.Bragg. So much easier keeping copies of all those notes! I called UW Med Records to have a copy of recent spine MRI and Xrays mailed to me which no big deal any 1 of those things but altogether it takes up a lot of time!
I talked to my Insur. Case Manager while still at the Neurosurgery Appt to sort prior auth for the Xrays done (PA is covered for a yr at a time but something was messed up today) and several other phone calls or messages before I'd ever gotten home.
Once I got home? More phone calls, emails, answering messages, editing a document for the interview/photoshoot I did a few wks ago (Levi and the guy he works with do a write up to go with the pics, I somehow messed up the changes I'd made so will have to re-do that in a couple days). This on top of a few 'more normal' things and the day has just been busy and kind of nuts but one of those days you wonder 'what did I do' even though I know I actually did a lot!
Anyways so I guess I've just been thinking a lot about life and trying to figure this LP Shunt irritation/symptoms out and in general pondering life and my life and maybe especially so b/c of watching people around me and how normal their lives seem (even though I realize there are so many whose lives are equal as out of the ordinary as is mine).

Happy 34th Bday I guess and hopefully a year that I in a way is a little less frustrating than this past yrs has been! Was definitely nor all bad and plenty of good sometimes just would be nice if it where a little easier at times! I know if it be God's will we will figure this shunt stuff out, the seeming heart (rhythm) issues and i'll con't to hold my faith, the best I can (failing often undoubtedly) that tomorrow and the next day and the day after that will bring answers and better days. For now I am just grateful to have all I do and even though I don't feel particularly awesome I know I am blessed by those around me whom I love, my Team of Providers and even Providers, like Dr.Bragg whom are no longer here but choose (so much gratitude on my part for her!) to stay a part of my Team and so willingly offer so much help.
 I am grateful for all around me who (to be perfectly honest) sometimes pick me up in a sense when I am frustrated, tired and at times feeling a bit at the end of my rope. I am grateful for all who offer advice and frankly optimism that I sometimes am just barely otherwise holding to (re finding answers).
 I know we've done this so, so many times but even if I felt uncertainty other times atleast I knew in my heart Dr.Bragg would help me figure something out. Now I don't feel that certainty and that stinks. I do think Dr.Iskandar is trying, much thanks to Dr.Bragg for that but I don't think he really gets what it's really like in the harder moments and it just seems or feels like she got it in a way that made even the uncertain, difficult times a bit easier to handle. This all said I'm not giving up, I can't but it does get hard!

Thank you for stopping by, sorry to vent, sometimes it just helps!

                          San Diego, Loma Point Beach (I think that's what it was called) - was beautiful!
Thanks for stopping by and no matter, ultimately I know my God knows the plans he has for me. For that I am grateful.


Tuesday, February 28, 2017

Rare Disease Day - a year ago.. Now vs then

I am not a worrier all that much or the things I do worry about are things that in the grand scheme don't matter that much but 1 thing I do think about often enough and worry about some is (especially when it's something seeming new or uncertain) will my drs. think I'm making something up? Will they (do they?) believe me?
I can't really say why that's something I think about but I do and I guess maybe it comes from all the days when no one knew and from time to time I did get a dr. who in as many words questioned what I said and/or felt.

I am wide awake (but certainly tired!) at 5 in the morning, this Rare Disease Day, many things on my mind and some iffy/odd/weird symptoms occurring (very) intermittently over night and it ALWAYS makes me cringe! I'll wait to say anything, see if symptoms con't or not but to this day I STILL hate calling drs offices, trying to explain something (I will be 1st to say I often struggle  trying to explain symptoms or how I am feeling or if something different what it is exactly. Hopefully in this case the symptoms where just a passing thing!

It is RARE Disease Day (capitalized b/c come on it's RARE DISEASE DAY!) 12 yrs ago this day didn't exist so it's a pretty neat day to me, even if all i'll be doing is driving my sleepy self to infusion, working on paperwork and phone calls and 6ish hours later driving myself home (to hopefully crawl in my pj's and go to sleep I hope!) On this Rare Disease Day I am grateful to have this infusion and even if it's an (basically) entire day 1 day of every wk, week in and week out I am GRATEFUL I have a treatment and to that better treatments are being studied and in studies!
None the less, if you are healthy be grateful. If you know someone with a rare disease, wear your jeans (for genes, the faulty errors for those of us with genetic issues in my case the error falling to a single gene (4p16.3) which was something both my Parents happen to be carriers of)! And if you are like myself walking around with a rare genetic disease well then celebrate this day in some form or another as we are alive and though some or many days may be difficult we've made it so far!


ps a year ago earlier this week., I had heard from Dr.Bragg that she'd accepted the position in AZ at PCH. I can still remember how I felt, how many times my Providers said to me after that (and still say from time to time) they didn't know how to replace her and "there will never be another Neurosurgeon like her". Doesn't mean other drs. aren't good just that she was mighty special for her field!
Reading the various things I wrote that day and the days after was a little heart wrenching (I was so scared, undertain, afraid I think) but I also wrote that I couldn't wait for it to be a year from then honestly for the simple reason that things would be better settled, I'd know who my Neurosurgeon was going to be and almost above all I'd know or have a better idea of what things would be like. I am glad it in fact is a year now! I miss her terribly but she's thankfully has in fact kept in touch.
I'm working w/her former Partner now and though that's not always been the smoothest (I guess she just was a good listener, she didn't try to pretend she understood it all but she learned). - Things will get better with the Neurosurgeon I see now, he's told Dr.Bragg and I he's glad her and I keep in touch as she helps both of us. Above all I get it, he's just a different personality type than she was, but if he tries I can keep on trying to.
 Just forgive me when I get frustrated and when I feel like I'm banging my head on a wall. It's simply b/c I want to sort things out and most of all, above all I just want to feel better (head is pretty good, the leak makes a huge difference, it's the low to mid back radiating pain and the deep-again radiating pain down my R side and at times now when on my feet my L side as well. God has a plan, right?

Another year from now, God willing who knows what will all have occurred, what i'll be up to and what better things may in fact be an option or closer. God willing!
Thanks for stopping by,

ps It may be to late but wear your jeans or wear your blue!