Where does a year go?!?

Where to start this post. *hand to face palm* - i've thought a few times about updating but then would get distracted and I never did come do a post on the past (atleast ? ) 6mo. This yr to put it mildly has not been the kindest (ao many I suppose, what with COVID) but in my life 2021 will go down as quite possibly a year from (insert word, palm to face). 

I honestly remember very little of last yr after the shunt infection/hospital stay and those surgeries (several apparently including 1 that cleaned off a lot of scar tissue and likely only added to the whole GI mess i've been dealing with since I think now it was last fall. I remember the Neurologist really advising to start the anti seizure med due to my increased risk following the brain massacre's (ok, brain surgeries last summer but massacre doest seem entirely inapproapriate though i've to say I do remember at some point after the brain surgeries thinking as I was recovering and wishing I could drive (that would take till this past winter, March/Febr or something like that (6mo post op) when I followed up with my Neuro Opthalm to re-do visual field testing that I apparently did realllyyyyyyyyyyy, reallyyy bad on last fall. That I worrieed ALOT about. I love my family and my best friend and all they did to help me and take me to/from infusion (Madison, about an hours drive) during the time I ccouldnt drive but I also so wanted that freedom that driving gives not to memtion I had (have) s car i'd only had a few months (not very long) before all the infection and shunt surgeries mess went down and (being honest, lol, another hand to forehead moment)Honestly I was pissed (not literally, just frustrated if I had this new car I was paying for and then wouldn't be able to drive it saddened and frustrated me and I just well thought of never being able to drive again was really-really hard to swallow. THANKFU;LLY (caps b/c I did end up passing the visual driving tests and Neuro Opthalm. signed off I could do whatever needed to be done to get my license again. Which this turned out to be essentially having to do nothing besides my Neuro Opthalm sent in some release or something. That made 1 really, really aweful year just a little bit better. I have loved being able to get in my car and go to the store or to say Target (typically I just do that when coming home from Madison anyways but is nice to not have to hope I can get whoever was taking me to stop or even there's a grocery store there I really like stopping at on occasion. Ahh these little things sometimes make my day when coming home from an appt or pt weekly infusion. +D

Things also are getting back to a more normal in other aspects of my life and hopefully just keeps on.

The 1 huge thing thats been fairly difficult to manage and especially b/c seems like maybe 1 out of 10 medical drs/team are aware of the issue. I certainly, living in my little world never thought i'd struggle almost 6mo (4=6mo ) later with this issue that I proior have seen tooooooo maaannnyyyyyyyyy other families and people in general I know (but no one really talks about it b/c those of us struggling with the issue know how common this issue is from others we know or atleast in my case 2 of my providers having  shared (without giving patient info)  as well as several friends of mine. Some at this point already know what I am talking about while others if you do not I am glad for you.

The Neurologist that was assigned my case (I guess, not really sure  after a suspicious EEG (anti seizure test) after these brain massacres (err surgeries)  wanted to start a aeizure preventive med which i remember being opposed to (I know wayyy tttooooooo  maannnyyyy who've had complete and utterly ridiculous issues with their stomachs/GI having shut down and few (very, very few) :/ ) in the the medical community have ever heard of this or experience with it. <---definitely a issue that the medical community needs to be taught about but will likely never happen. I kid you not, just local and friends I know (though non will mention it, I only know b/c I asked around and these friends sent me private messages with their experience and despite their HCPs trying to help they even years later still have absolutely no GI movement. A friend has been trying to help me but to date. 6mo or so later GI still not working/ I have this powder from my PCP that thickens up output but ya kinda need GI to be working to even have that med help. It's honestly like a no shit-shit show. I was supposed to f/up with the Neurologist a few wks or so ago but why? I am not on the med anymore, nor having seizures so seemed little point and honestly again why? I don't entirely place blaame on that dr but how do so many in the healthcare field nor know this issue???? Especially b/c I have talked to my Pharmacist and  several otherof my providers and they shared (without giving patient info) they've seen the exact issue in other of their pts from the same med and that non unforunately have found a way to reverse the issue. I atleast have this odd barrier applied to 1 set of my glasses  that blocks brain/gut communication so if very careful (veerrryyyyyy careful )as these glasses are both a help and a menace as food if not careful or moving to much due ro the lenses filter sends food to who even knows where in my GI system but (i imagine due to?) the cancer and ostomy makes for some very cringe worthy, very painful times. Doesnt matter what I try or do to try and thicken foods, etc food or liquid if swallowed with these lenses ends up in some really, really, aweful places - I imagine maybe the cancer and that ever evolving plate of **** doesnt help nor all the scarring thar's likely in my gut/stomach from all the hernia and ostomy surgeries. Who even knows but there are many a times I just fun a bath and try to wait it out in there, kinda numbing the pain. Being completely honest this kinda brings tears to my eyes as this whole mess is at times very, very frustrating. People mean well and there's very few I even talk about it all to anymore b/c 1. lo, people either thing you should just be able to put mind over matter (I appareciate the sentiments but then there are to many of us that I personally now know who like myself pretty much just keep the issue to myself b/c vast majority are not aware nor aware it's not just a (unfortunately) easy fix nor can we just stop thinking about and will work again. I now know from asking around and talking to some of my providers atleast 2 local (to me) people who have had the same long term med affect and found no way to reverse it nor did their provider who prescribed the med ever heard of this (again way to freaking common) med issue. Floors me and lirritates the hell out of me how common this issue seems to be yet maybe 1 out of 5 medical people has heard of or knows anything about this. Is this b/c our medical system places so little time for HCPs to talk to/work with each patient?  I don't know and don't blame most providers. What I do blame is a pharma system that doesnt track meds well enough and that so many meds cause such significant side effects, in some of our cases lasting long after we've been off the meds and yet is this issue ever shared by the pharma companies? Seems not. 

So anyways that's that and well, lon and frustrating issue. I am mostly joking when I say thisbut lo, since the cancer is so hell bent on keeping progressing and my Cancer dr isnt comfortable restarting any cancer treatment ( and in realiy given how progressed the cancer is and spread here., there and just much progressed i'm not even to sure the tortures of the oral med are worth it ? Don't know and something i'll just keep sort of burying my head in the sand. <--- Not that I don't think about it and the end game but lol, there's enough else to think about or sometimes worry about I don't need to spend much time if any time worrying about what I can't control. As much as I sometimes struggle I know God knows the plans for me and I just always pray for his guidance, wisdom and insight to help me make the best decisions and that I pray the end won't be to terribly painful given sometimes i feel like i've already lived enough for many others - not that i'd wish my messy, mess on others! I wouldn'totherwise not that I remember meeting her nor that appt but I apparently met my new Cardiologist last yr after my Cardiologist left WI for IL and his new position. I f/up with Dr.Gerardin this wk do am admittedly curious to meet and talk to her. i love that her interest is my genetic disorder (MPS). From the numerous emails i've exchanged with her both prior to her coming to WI and while she was at UofMn doing some of her training she's always seemed very nice. Kudos to me, lol (joking when I write that) when I did meet her last fall I was in her words "very nice". I am glad for that , yikes I wouldn't want my ew dr to dislike me! In our emails back and forth before she was recruited here by Dr.E she always seemed very friendly and well her interest in/knowledge of my MPS I is a definite bonus. =) I f/u[ with her this week with an echo and apppt. I' am not sure if i'll be driving myself but all the hwyroad changes in Milw. will make for an intersting drive albeit the only way i'll get to truly know it is to do it myself. I can ride with someone 15x and I still likely won't pay enough attn to remember how to get somewhere.     Unlike my nephew I do not have a map-direction genius brain! Non-the-less I am sure it will be fine and i'll take virtually the same route as always minus the new changes.