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.

Shunts (infection), ostomy issues, etc.

I am very good these days at thinking about writing an update here but then not actually doing it. There's a fair amount going on, a fair amount on my mind so I figured writing usually helps me anyways.

1. Re the (seeming) never ending ostomy issues this has been less then smooth the past couple months but especially the past few wks. I saw my General Surgeon a few wks ago for which she wanted to see how the cancer scans looked (stable thank God!!!!) before deciding if she'd be willing to fix the ostomy. Right now the ostomy is significantly prolapsed and thus causing the parastomal hernia to be painful to put it slightly especially when the ostomy prolapses to the full extent it does (sometimes it will go in partially and swelling around it not be quite so bad). That f/up appt is Weds and I am so-so praying. Not that I want surgery but to make this less uncomfortable, to make it easier to eat and to make getting dressed and finding shirts that atleast semi hide the bulge and outward area just be simpler would be really nice!

2. Cardiology - I met the new Cardiologist last wk. I've actually emailed with this dr. since she 1st came to CHW (not even sure when that was, maybe a year-ish ago but can't remember for sure). My (long time, 15+ yrs aka the longest provider on my team ) Cardiologist left CHW to move to Chicago about a month ago and super bummed to have had him leave though I do like the new Cardiologist  and fitting we've chatted numerous times (via email) before she actually became my dr. due to her interest in and having trained at several MPS I treating centers. My former Cardiologist had told me her recruited her specifically due to her interest in MPS disorders.
That appt last wk went well, things are for the most part stable but overall good news. I'll take it! She does want to see the pulmonary function test results I have next wk and see if that might give us any insight on the on-going (worse as the day goes on) cough.
She feels like my Lung dr and PCP that likely this issue is multi-factorial though. Likely due both from the heart and lung issues.

Cancer - scans where done last month due to a slight uptick on 1 of my cancer labs that are sometimes used to track cancer longer term but the scans came back stable. I was happy for that and my cancer dr said the particular lab result is 1 he'll continue to watch but won't specifically worry much about going fwd. My cancer seems to be a slow growing one so that is atleast good if ya gotta find something good in having cancer.
I was temporarily taken off the capecitabine (oral cancer med) after the CT Scans (chest and abdomen) showed a CSF (spinal fluid) buildup in the lung (pleural) space for which a thoracentesis was scheduled. That test was a couple wks ago and was definitely much easier then the one done last winter at St.Mary's. A friend went with me and then we stopped and had take out (eating outdoors) from a restaurant I like in Madison + she'd never been to.
Initial results from this test where unclear but show a mild infection in the lung space (the side my shunts both drain to). Peds Neurosurgery scheduled a shunt tap to pull off spinal fluid from each shunt (done last wk) and is running labs now to see if the infection is spread throughout entire shunt systems. If it's only in the pleural (lung) area then only that portion of the shunts will have to likely be removed (per my Neurosurgeon).
If the infection is throughout the entire shunt systems then the entire VPL and L-LP Shunt systems will have to be removed and replaced. Not something I am looking fwd to  (especially given COVID) not to mention if my General Surgeon is willing to fix the ostomy hernia and prolapse (I cannot tell you how much I am praying she will) will that have to wait till after the shunt stuff is sorted?
 I get my risk that hernias just recur but the 1 repaired last summer has held well and I think if I wore the stomach brace I have now consistently we'd have better luck. Anyways I am not sure if she is willing to fix this would that have to wait till after the shunt stuff was cleared. I  hope not!!!

 Almost above all I just want the hernia repaired so hopefully less discomfort and maybe food would go through easier (keep getting partial blockages which is apparently not uncommon with this issue). I like food and I like to eat what I like to eat though I do always try to be careful both before this hernia and prolapse and now. Please say a prayer with me if you wouldn't mind.

                                                   

A few wks ago I tried to figure out if I needed to complete renewal paperwork for my Apt (it's been a year now i've been here. Time flies in some ways!). I never really got a clear answer and then Fri got paperwork saying my funding grant would expire the 31st if I did not have it in before (yet it was the 2nd when I got the paperwork and notice). Cue much stress and worry over the past few days. I immediately signed and emailed in the paperwork and mailed a print copy this wknd but am nervous! I pray this are able to be sorted easily!

Otherwise just a little stressed about stuff I can't control and hoping this pandemic doesn't affect the part time work I do. I love my job, it's flexibility and that extra income makes such a huge difference in being able to pay bills and have a little extra. I really hope I get to keep this work. I can't say what a difference it makes and how grateful I am for it.

I say it probably every time but will try to be better about updating sooner. Stay cool and enjoy the warmth!
With God all things are possible,

Erica