Sunday, June 16, 2013


This has been a pretty chaotic past week although this next week promises to be just as chaotic just maybe slightly less so. Lots of appts (yuck, I really, really, REAALLLLYYYY  miss all or most all of my providers being in Milw., was SOOO much easier!) I feel like ALLL I am doing the past few weeks is drive, Appts, drive, appts, drive, appts, drive ,appts, drive. =/ Last week I threw teaching VBS in to that mix Tues-through Friday mornings with appts every afternoon either in Milw or in Madison and then Friday afternoon I drove to the Chicago area to stay with some friends. Last week was ERT (Milw) on Monday, a bunch of running around on Tues afternoon and getting a haircut in Columbus. Weds was a initial post-surgery Hand Appt at Dean-East (Madison), Thurs was Pain Mngmt Appt (Milw) and then VBS each of those mornings till 11:30-12 plus headed straight to Chicago Fri afternoon.

This week I should atleast be able to (hopefully) get a little more sleep. Monday I  have ERT in Milw again (we are changing the infusion rate, slowing it down), Tues is Dentist, also in Milw., Weds is back to the Hand Clinic at Dean-East in Madison (get the stitches out, hopefully get rid of the splint for good) and Thurs is the Appt w Cardiothoracic Surgeon (Dr.Mitchell) + my Cardiologist (Dr.Earing) to go over the Valve replacement surgery in July, followed by an Appt w my ERT-infusion nurse in IR (also at CHW) to get the Port re-accessed for Thurs's surgery. Then back to the Dentist Thurs afternoon. Friday is the TPL shunt revision surgery (replace the valve type and move the distal end of the shunt). Which on that note I did send Dr.Bragg an email tonight though it's possible I won't know till Fri just asking if she thinks down the road, post-Valve replacement surgery would we be able to place the TPL shunt back in to the Pleural space (I dread having both in the stomach and no-matter if the spasms recur (I pray they don't) having both shunts in the stomach is just not a comfortable thing maybe bc of the body structure of MPS pts?

Although I didn't think the Chicago MPS meeting was very informative (when will these meetings ever have something also geared towards individuals affected by the disorders?) I did enjoy going and especially spending time with friends and loved spending Friday/Sat w Jamie and her family! I actually didn't take many pics so don't really have any to post but the drive no-matter if gas prices are just about killing me (feels like it) was soo worth it! I also didn't think driving in Chicago was as bad as I thought it would be, I will definitely go back! The toll booths definitely kill me, like on an "really, is that really necessary?" level! I can't imagine families like my friend Jamie who have to drive back and forth to Chicago multiple times a week in IL and have to pay those tolls AND gas prices AND hospital parking costs! INSANE! I don't think to many hospitals actually think about what it costs families to begin w to bring their kids or themselves to the hospital not to mention adding in all those other costs!?!?!?! NUTS is what it IS! Although I am sorry for Jamie for the driving she will have to do I am super happy to say they are moving to the border of IL and WI soon!!!

I vented about this on fb but one thing I just kept thinking about on my drive home from Chicago/Zoo yesterday (3 1/2 hrs) was far to many drs won't give new drs a chance and don't seem to realize the only way we are going to get more drs who understand what MPS is and are themselves 'experts' in it is by referring pts to those drs who for instance have good bedside manner but little or no experience w MPS. We need to start slowly training these drs who don't have much or any experience to recognize the significant issues that occur w our disorders but which to many drs INCLUDING to many "expert" drs fail to either pick up on or don't believe are an issue and getting more and more drs who can see pts and help pts vs having 1 maybe 2 drs in a geographic area who are so-called "experts". (In my opinion there are NO experts). I think I am proof alone that giving new drs who are interested and want to learn but who have only a little knowledge or experience of MPS a chance   can get pts a lot further than sticking w the same old 'tired' group of old drs who won't change their mindset and won't think outside the box. My drs have done well w my care and NON of them are experts but they have been interested, curious and have wanted to learn!

Changing topics ever-so slightly; I do have a pretty great group of  'Core' Providers, they seem to care, seem interested and have each in their own ways learned a lot about my issues, the MPS and especially their particular areas they each treat... That said, what I've written below, which is basically me venting has NOTHING to do with them.. I am quite thankful for them!
 I have several providers who can't seem to fathom that 1. No, I don't actually want to see all these drs and have all these surgeries, it sucks actually to be perfectly honest. 2. It's like it is a mission to make it quite known they can't fathom how any patient can have so many health issues and thus providers and thus of course appts!? (umm, hello?! Have they ever saw other MPS pts? Read anything about it? These are not unique (to me) issues!) Why do some providers find it so necessary to question decisions we as patients make? Not related to their issues either but decisions that really have nothing to do with their area and for which they often have no business commenting? As if we the patient(s)  really already don't loathe the disorder and process enough and then providers who just "have" to give "THEIR" opinion have to question why we see so many provider's and "why" there are so many issues? Ummm, one suggestion?! A Search engine and type in 'MPS', grr!?!?

How can some providers just get it and others although they can be helpful they are clearly, completely clueless about the actual disorder? I am having issues  a provider and just frustrated so this is where this vent comes from. =/ I know it is sort of random, I  just was feeling really irritated and frustrated when I wrote it earlier last week.

On a very side note all of my out-of-network, in-network specialist exceptions (Neurosurgery, Cardiology, Cardiothoracic Surgeon, Neuro-Endocrine, Neuro-Opthalmology and a few others) where re-approved for another 1 year Insurance specialized in-network exemptions. Good news! =)

I'll try to update later in the week, maybe after Thurs's appt w the Cardiothoracic Surgeon and Cardiologist.
Thanks for stopping by,


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