Monday, July 2, 2012

4th of July, re-programming, PCP's, and on it goes..

So this month will be filled with meeting new potential primary doctors (have emailed and have appts with 2 potential different ones). I emailed  Dr.Bragg to ask her what she thought of trying to turn the LP shunt (2nd shunt) back down to either the lowest or the 2nd lowest setting for a week or so and see if by some small miracle it would stay open now that we've had it turned up for about 1 1/2 weeks. I dont have high faith it will work but sincerely want to avoid any shunt surgery this month as I have alot of things going on - she agreed we could try this and so I see her thurs to re-program the shunt and see what happens. I guess i'll also find out from her if she had a chance to think about what we would do if we do have to add something to the 2nd shunt or do surgery in general with the shunts... I am curious I must admit what she might have come up with if anything yet - I figure if nothing else this trialing turning it down again can buy us a little more time to.

For the 4th of July I am headed to see my sister-in-law, brother and niece who live near Port Washington and watch the fireworks over Lake Michigan which should be fun albeit hot. :)  This past weekend we had Z's 6th birthday party so I also got to see them there as they came up for this.
Later in the month is Fish Day back in PW which is always fun and we've talked about either going to the Milw Zoo or Bay Beach yet this month (and then whichever we dont do in August) + of course the Conference the very end of July. Fun! :)
All for now - I wrote the below last week and never posted it so might as well now.


Written around June 28th..
Life goes on and life moves on; we either go with or we let it pass us by and I try very hard, work very hard to not let all these MPS things stop me from doing most of the things id like. Somedays, many days are of course harder than others and I struggle endlessly with this. I want to be energetic and jump out of bed in the mornings and start the day raring to go. I want to go get the many things done (grocery shopping, store runs, at the moment looking at dishwashers, go visit my parents at the end of the day on any particular day if I want or visit my sister and niece and nephew at the end of the day and not be so damned tired on top of the endless phone calls and paperwork and details and issues.  I dont spend endless amounts of time thinking about all of these things but it is of course impossible not to think about the issue sometimes, somedays I am human after-all.  I am really organized when it comes to what needs to be done by when and I make lists of what I need to set-up, what I need to arrange or even what I need to get from the store. I have a list for everything, I suppose it makes me feel more appeased about it all. I like when my desk is a little less cluttered and my pile to work on for mondays (infusion day which takes many hours) is a little less immense. Somedays though id just like a secretary and chaffeur and masseuse and chef and every other little thing. I defintiely couldnt deal with someone else cleaning my apt - even if I am not the type to clean everyday I still keep it decent and vaacuum every few days and clean the bathroom, empty the garbage, etc. I just couldnt deal with someone else doing that for me all the time. That said I know in reality all the other things id suck at letting someone else do to, I may hate having to pick up the phone and call and ask one of my drs nurses questions (way to often with my neurosurgeon it feels like - even if I like them I dislike having to ask what often seems like endless questions of people!!!)  or the time consuming, endless scheduling, rescheduling, etc, but id still I know not do well at having someone else do it for me. So in other words I want someone lese to take my life for a while but yet  I dont. I want to feel better but I hate asking for help. I want more energy but I dont think there's an  simple answer for that and above all I just maybe, just want a break?! Im laughing as I write that....

I feel incredibly blessed to have the good insurance I have which allows me to pick and chose essentially who I want to see (even despite our switch July 1 to an HMO ive still been approved to keep all but 1 of my core drs (and that last one isnt ruled out yet)  vs having to try to start over with "in-network" doctors who dont have experience, interest or knowledge of the complex issues that go with all of the underlying issues. No one issue is independent of the rest of the MPS and nothing is reliant on it's own diagnosis (by this I mean the heart issues get complicated by the lung issues and autonomic issues and the hydrocephalus issues get complicated by the ventricles not expanding, the optic nerve issues not presenting normally and the neck and spine structure being so narrowed, the list goes on and on). So yes, as maddening as this process has been in little ways with the switch from an Point of Service plan to an HMO anf having to find a new PCP, and switch a couple of my lesser seen specialists  I know I still have had it so far way easier than many with HMO's as this isnt a new company, I have the same Case Manager (I still am amazed more MPS families dont request one of these - I like control and informstion and making my own decisions but the thing is I still DO all these things even with my CM - she just helps make things more fluid! I know many with HMOs have 0 say in who they or their children will see and havent or dont have the fortune ive had to have many doctors they see that where otherwise out of network approved as in-network. This hasnt been a simple process and has been time consuming but id do it all over again (and have to give much credit to my CM for her un-ending help and answers to my endless questions about the process)  if it ment having the choice ive been given in these 'core' provider decisions!

As far as PCP's I was given the name of 2 PCPs that where recommended to me by others who talked to their staff and colleagues and.or knew the office and so I emailed both PCPs out of curiousity if either would reply. If I didnt get a reply it didnt rule out my setting up an appt and meeting them atleast but I was still curious. I just briefly explained the situation and my issues and the next day I had a reply from the 1 Internal Med provider that she was interested and would make it her goal to learn about MPS/read more about it before I met her. The other dr a Family Practice primary doc emailed me back a couple days later saying that she was on vacation and would look over the email and get back to me as soon as she was back in her office. And she did, she emailed me yesterday and was also interested and commented that she knew I would know more about the disorder than she but we would work as a team so I will also set up an appt to meet her and talk to her more. Not bad. :)

The end of July I am headed to the MPS Society conf in Boston and have set up a meeting on that fri to go over to Genzyme Center (the place is purely awesome!) and go over the survey results and meet the Patient Relations Director I have been working with over the past year which will be nice. My former Genzyme - Insur Case Manager as well as my current Genzyme-Insur Case Manager and  I are also all going to try to have lunch together then. I am looking fwd to it. :) This week ive been busy co-planning the research meeting for that Sat night which will host 2 of the drs researchiung 2 different drugs for MPS I (one is apptoved for other uses and the other is in Phase III trials for DMD and CF)  and MPS I families. It has been as I think I previously mentioned interesting and although ive done this sort of hotel-meeting set up before is still really nice to learn new things as well as be involved in behind the scenes details. :)

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