Wednesday, May 24, 2017

"You do feeling bad really well", "You look great!" - the seeds that sow self doubt

Sorry this is one of those updates I started last wk and never finished....

The thought that's on my mind today and admittedly quite a bit lately, (but today especially due to a well meaning comment by a former Nurse of mine). "You look really good, I thought you'd look a lot worse given your posts on fb". To that I just made the comment (b/c it's been said to me so many times) 'I do feeling bad well' meaning I get up, shower, get dressed and do the minimal to show up.  I often think about (or often enough anyways) how my doing this "feeling bad really well" I do think hurts my getting answers quicker often as how often do drs when they see a Patient that genuinely looks bad//wears how they feel on their face react more to helping quicker? When drs whether they mean to or not see a Patient who is dressed, independent (something I strive for, I give up so much to my MPS that where I can I refuse to rely on someone else as much as possible) and still functioning do they (drs) think 'well it can't be that bad, she looks fine'?... When for instance the with the shunts they are in complete shunt failure its very much noticeable to (I'd guess) anyone but with this partial failures I think it's much less obvious..
These past few wks that have been plain miserable have been really difficult but that doesn't mean I can stop living and just not do the things I have to do.. I can't.. I think this thought is particularly on my mind  after today's comment and then yesterday  I stopped by my Parents after an informational insurance meeting I went to at the school district Tues night and my Aunt and Uncle where there (whom I love). My Uncle said essentially the same thing that my Nurse said to me today, along the lines "well you look really good". I cringe when people say that BUT I also know people say it in a well intentioned way so it's not even like I am ever offended. I'm not.  I suppose it's just me doubting myself and doubting if people really believe me then and do they or even (especially )  my drs think I'm just over blowing symptoms or whining or can't handle things?
Like I said I way over think this sort of thing but how can I as a Patient not when it's so difficult to get answers and I feel like we know what 1 of the issues is based off the shunt taps but my Nrsgn only sees the better times of day and so doesn't see the times of day that are worse and intermittent throwing up and affect vision and appetite and nausea especially?

Tomorrow (Thurs) is the Lumbar (low back) and Thoracic (mid-back) MRIs so I am praying I can make it through them. They offered them under anesthesia which I declined as I want to be able to drive myself there and home but I am hoping each doesn't take more than (hopefully) 1/2 hr and in the time waiting to get the shunts re-programmed after the scans any pressure will subside.
 The 2 MRIs are atleast scheduled with an hour break in-between each (my choice, I thought maybe would make them easier). I get the results then next wk.
I can't even say how much I have been praying there is some clear guidance to why the low-to-mid back pain has been so (incredibly) bad! The headaches are really bad at some points (and so clearly pressure related as they subside when it feels like my head finally clears) and other points not quite as bad. The low-to- mid back is something else though! Holy heck!!!! 

Last week, new Infusion site - Dean Fish Hatchery Clinic
I think anyone who had anything even remotely to do with the Infusion site switch (weekly Aldurazyme-Enzyme Replacement infusion) knew I'd had plenty of reservations (doubts?) about the new site and switching to a site that had no experience w/my MPS I. It's not that it's even unusual for any given place to not have experience as there are only a couple of us here in WI who get this sort of treatment and especially for my MPS I but as much as I'm willing to train new/young drs I wasn't all that keen on training a new infusion site.
D-FH from what I know had no experience prior to my starting there yesterday (Tues, a week ago) with any of the Enzyme Replacement drugs, seeming no experience even with drugs related to mine (synthetic enzyme replacement drugs, such as Fabry, Gaucher, Pompe).

That all said from all the people who'd taken time to call me, to talk to my FMLH Infusion Nurses and who seemed like they where working with my Dean Case Manager and PCP to get things squared away I was pretty ok with the site change by the last few wks. Much more at ease anyways then I'd been when I 1st found out about the pending site change!
Although it's different than how it was done at FMLH (but there is no right or wrong way as long as the drug is mixed and infused the same way I had it done at FMLH)  i'll have 1 Nurse (Jill,) as my primary Nurse at this site and so weeks I may need to change my infusion day (earlier this wk, my 2nd wk) Jill and I worked together to pick a day that worked with the days she is there as she prefers to be there as much as possible especially in the beginning she said.
                                 New Infusion Site (West Side Madison) Dean Fish Hatchery Clinic

Infusion itself went fine. The Pharmacist who'd conference called the other week along with the infusion site Nurse Manager stopped by and introduced himself as did the Nurse who will on the occasion if Jill is gone do my infusions.
The site itself is smaller than FMLH, most rooms are also single Patient-infusion rooms though from what Jill said they did have an area that was for multi-Patient infusions (I'm not sure how they decide who goes in which, maybe based off infusion run time and how busy it is that day?). I didn't ask.

My Primary dr. which I think I had written about in another post is in the same building as my new infusion site so she had stopped by last Tues (my 1st day there) to check in. 
The only question I'd asked the Pharmacist and forgot to ask them last wk was Aldurazyme is supposed to be given based off weight (mine is fairly stable give or take 5 sometimes 10pds any given few days or week) but I want to make sure they are doing that atleast once a month just to be sure. I did ask Jill my Nurse about this drug based weight this wk at infusion and about checking weight once a month to which she replied we can monitor it every wk. I am fine with whichever and not to worried about the dose changing but just so we'd know. Right now I actually receive an extra vial of Aldurazyme more than my weight so we do have room.

                           Sunday School, our 2nd last wk for the 2016/17yr (hard to believe!)

Insurance, I may have updated in an older post (can't remember) but this is changing come July 1st from out current Dean Health Plan to Unity. At this point we are planning to go with a PPO plan so I should be able to keep my Providers the bigger question will be where will my infusion be, will the new (Dean) site keep doing it or will my Genzyme Case Manager and I have to look at going back to FMLH or something else (Unity is typically aligned with UW Health System though with the PPO plan I have wider Provider/care options.

That's about all but also enough! =) Will update when/if I know something and please say a prayer we might finally get  clear solution to whats going on/causing all the irritation/tremendous pain?!?!
Thanks for stopping by,


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