Tuesday, September 15, 2015

My prayer, my thoughts, my uncertainties.. Dr.Bragg took fluid off, headed to Utah

A good article, the last 1/2 of which describes somewhat how I've felt today..
"When life is shitty, Show up for Yourself" - it's a good, poignant article
Saw Dr.Bragg this morning (to have shunt tapped, fluid removed before I go to Utah), it was only just as I was sitting at my desk a bit ago to quickly respond to another drs. office that I realized what I forgot to ask Dr.Bragg this morning. I swear it doesn't matter if I put reminders on my phone to myself to ask, I STILL forget to ask quest ions!
In this case my Genetics dr. at BCH in Boston has been trying to connect with Dr.Bragg and apparently not having luck (he was/is wanting to see if he can work with her to get a sample of my CSF to test the MPS (gag) levels in the CSF.
Given we pretty routinely draw off CSF I cant see why this would be an issue but I'm not sure how to connect these two and admittedly a little uncertain why it has been so difficult. It sounds like he (his Secretary) has talked to Dr.Bragg's Secretary (who is great) several times and I know they have each others email info.
Unsure!? I do think it is information/a test that could be helpful overall so I wouldn't mind his getting a sample to be able to test...
Anyone have thoughts? I absolutely get their schedules are busy, I just am a little uncertain as Dr.Bodamer asked me if I might know how he could get ahold of her/could I ask her the best way..
I am not to big a fan of playing Secretary given I already feel like I spend hours and hours of my own care coordinating, doing insur. (which isn't bad), pharmacy stuff, paperwork, paperwork sortment/getting various records (I get copies) sent to appropriate Providers, etc..
Will keep working at it and try to remember to ask her next wk when I see her for surgery. Dr.Bodamer has talked with Dr.Earing, my Cardiologist so I know it can happen and they can all help each other..
On that note, I did obviously see her this morning, mornings are not at all my thing but I'd gotten up several hours before I had to leave as the longer I am up the better the headaches get (never thinking to look at my phone messages/email, I rarely ever look at anything besides to check if anyone has called while in the shower). - Thankfully was just a short msg from her and the appt was still on, I initially had a little 'oh shit' moment thinking perhaps it had been cancelled.
Anyways I should have but I didn't ask her what her thoughts are re: if she's continuing to consider replacing the 2nd shunt, timing for that if she is, etc. I really wanted to (in the worst possible way, actually) but I hesitate to keep asking her as I don't want her to get annoyed! Sometimes I am my own worst enemy when it comes to bringing things up..
She's really great about answering questions I have but that still doesn't mean I want to ask her or any Provider the same thing over and over and over again... Believe me you don't even know how bad I wish we could just replace that stupid 2nd shunt. I am SOOOOOOOO sick of feeling like shit 1/2 the day!
I know our replacing the LP Shunt valve will help that shunt drain more consistently but I also know it isn't going to be enough, as it wasn't enough after only the LP Shunt was placed in May.

Whether right or wrong just about every day in my prayers I pray and ask God if he can give me wisdom on this issue and patience to con't to deal with this as sometimes (not to sound whiny) it is really, really hard. I pray he can guide us and above all if it be his wish we can replace that shunt. I absolutely don't want more surgery but I DO want to feel atleast better. =/
When I've woken up for the 3rd, 4th or 5th (sometimes more) time at night, days I have to get up early despite and even though I know it wouldn't likely be perfect I know without a day it would be a lot better than it is now. Being perfectly honest, probably b/c I am so over tired I am sitting her now in tears typing this. I am not a crier and try not to whine but when tired and frustrated it gets to me.
I cant say why but it has been a struggle the past week especially as I feel worse headache and symptom wise (despite the shunt is working) and yet I know I look very fine to people around me. I know I have an abitlity when I do feel bad to smile and laugh and in all honestly although I doubt people realize it I am quieter.
I listen more so than I participate in those times I am tired and my body aches, (low back? Holy hell it feels like it's on fire or something when I walk especially) and my head hurts though that atleast gets better throughout the day whereas the other stuff doesn't as much.
I apologize if I sound like I am whining? Maybe I am =) / =/ Sorry, I think it's because I am going to Utah tmrw, to the National MPS Conf. and although it will likely be fun once there I am not really excited now. It just sounds daunting and tiring and to be perfectly honest I just want it to be a week from now so atleast I can feel a tad better, more consistently? My ultimate wish would be to have that 2nd shunt back but in that regard i'll keep praying.

4yrs ago, 1st VP Shunt (pre-2 working shunts, LP Shunt was tied off)

As far as the CSF (spinal fluid, what drains through the shunt, the source of my headache grief) Dr.Bragg pulled some off again this morning as I mentioned above and opted to send a sample to be tested "just to be safe" before next wk's surgery.
I doubt there's anything wrong with it, infection wise (but I am good with cautious).
She commented the fluid had some blood tinge to it though I don't think that's a huge issue.(it doesn't surprise me, the blood tinge, I can feel when she is pulling fluid off), it's not very comfortable as it's being removed (but to me not something that would make me kick and scream albeit I guess that does take a lot for me to complain) but at the same time worth the short term symptom relief in headaches and amazingly my appetite is pretty quick to come back for short term! That is always awesome!

Med wise for surgery I stopped the Baby Aspirin already and stop the Coumadin after Thurs. (5 days before). Then i'll re-test INR Monday at CHW prior to my ERT Infusion next door at FMLH and that result gets sent to Dr.Bragg's office.

Traci, one of my favorite Nurses from D6-4 (Neurosurgery at UW) sent me this pic earlier today. She is at a Conf. in IA for Neurosurgery Nurses and on the flyer saw Genzyme has a informational booth! WHOOHOO they are finally reaching out to other Specialties (last yr one of my other former Infusion Nurses Son's sent her a pic he'd seen my pic at Genzyme's table at a Opthalmology (eye) Conf he was at).
This is especially exciting for Neuro though as atleast for MPS I these issues are so misunderstood and not well treated. I thankfully, FINALLY by the grace of God found Dr.Bragg but for yrs prior to her had issues w/my shunt that no one would touch after my 1st Neurosurgeon abandoned ship. In my case as I suspect is more common than realized the Hydro is suspected to have been un-diagnosed for many years since symptoms began as a kid.
So good to see this kind of outreach! Traci was going to stop at the table and check it out. =)

In any case I fly out of Madison early tmrw afternoon for Utah (a connecting flight) but if nothing else the Foundation I work for has it booked in 1st class (can't hardly complain about that). =)
The week is filled w/sessions, meetings, a Walk/run I agreed to volunteer at Fri night and then I fly home Sun.
I then turn around go to ERT Monday and surgery if nothing changes (I think I may cry if anything does!) on Tues.
Thank for stopping by,

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