Tuesday, March 15, 2011

I should put a note that I am considering moving my website/blog to here - I am not sure yet but trying it out so for a while will probably copy and paste any updates to my cb site and to here..

It has been one tough past few weeks with all of the uncertainty around the WI budget mess and not knowing what is going to happen with my parents insurance and that uncertainty plus knowing how much help my new Case manager at the insur I have had since June has been makes me worry some about what would happen if the insur does change though I will still have insur of course. This CM has been really helpful in getting things approve (thoguh Dean in general has been very good) and in getting my providers talking to each other + helping me to streamline my care a little + in some case see how I could maybe improve it. She has come a long ways in trying to understand the disorder and my other providers have really I think helped her understand that MPS is really very different that most disorders - much more complex and progressive + not always well understood and requires different approaches than alot of problems.
There has been much drama between a former friend and myself and I am learning I need to not care so much what some people think - if someone feels they need to gossip about me behind my back to other MPS families then obviously they are not a friend as I had thought and I have cut the "ties." Bc really as adults is it neccessary to pretend like we are in high school just bc of seeing differently on for instance unions, collective bargaining and MPS it seems to. It seems in the MPS community sometimes if you do not go along the beaten path and have the usual issues + the appearances of MPS that some cannot accept that you truly have the disorder. I am sorry though I wont apologize that my providers and I have chosen with some of my health issues to take different treatment paths and try different approaches - nothing that isnt approved or well known in the medical community but in many cases approaches that havent been tried in the MPS community. I dont see many of the MPS specialists other than the ortho-spine surgeon and Opthalm and so while I do have to do alot to educate some of my providers about the effects MPS has they have often looked outside the box to try and find solutions which has sometimes worked really well and other times we've had to keep trying different approaches but in the end it helps us better understand what is going on with me. I also have issues that are not well studied in MPS and so this has been alot of trial and error. My GC commented at last weeks appt that at pretty much every appt now there is a new issue or issues going on for us to try and tackle and what many dont understand is that MPS IS a progressive disorder which does not stop even with getting the weekly infusions. (these infusions slow down the disease but do not halt it).

Otherwise my GC and I have been exhanging emails in tying up loose ends with the appt and have a few things to be worked out. I also meet with Interventional Radiology thurs and will update after that.

I picked up my 4 yr old nephew this past sat and drove down to my brother and sister in laws to spend the weekend with them and my 4 yr old neice which was a blast and the 2 kids had a good time and where like typical kids on each other like magnets (which is funny bc Zander really does not play with kids otherwise and does not follow kids around probably due to his autism but him and Jordan where like glue and when they did fight they made up within minutes and where back together running around and generally having a ball. Zander slept down by me and Jordan up by her room and within 15mins of Zan waking up Jordan was running down the stairs and they where off. I spoke with my sister in law monday and she said that my neice had done nothing but talk about Zan this and Zan that ever since we left for home! Zan did really well in the car (about an hour drive) and then we stopped at my apt for a bit and off to my parents. Was really nice and really great to just destress after all that was on my mind with the insur stuff, the budget-WI stuff, the drama and with the various appts and all related to that and what I was worried about. I hadnt felt so relaxed in a while and was totally what I needed I think!! We are planning to take the kids swimming 2 weekends from now at Blue Harbor which is an indoor aquatic center at one of the hotels in sheboygan.

I will update soon - go with peace and be filled with joy,


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