Sorry, I meant to publish the writings below sooner but kind of forgot as I was writing it while watching my nephew sleep beside me and while trying to get myself to go to sleep as well and then sun was busy, hectic and tiring at my parents with all the kids and most of us siblings there!

So the real reason for this particular writing is 2-fold. First last week from my Mom no less (given my Dad is the school district support staff union president I am more than surprised he didnt tell me as he knows how important any insurance changes are for me to know ahead of time!) I learned that we are changing from a Point of Service plan with Deam to an HMO - for anyone who doesnt know an POS plan pretty well means you can see providers anywhere with no referrals and you dont have to designate a Primary dr 'to run the show' ie give referrals or in other words if I decided I wanted to walk out the door (theoretically) right now and see specialist X, Y or Z I could and no one would have to approve it ahead of time. Not the case with an HMO. Believe me I am disapointed and frustrated but at the same time realistic and I know as far as in-patient stays providers always still had to call and get the authorization and Dean was good about approvals even with the 4 week stay last month and the 16+ surgeries in the past year. My Case Manager whom I talked to yesterday (have I ever said how much I appreciate her???) is putting in over-rides for the next 3 months so I wont have to start a-new now and get referrals from an in-network PCP  and start over by first seeing in-network specialists in order for them to tell me they dont have experience with my issues (Dean is a super small network and only one of my specialists whom I am first going to be seeing next week sees patients at Dean as well as at UW where he is primarily based). This over-ride will mean I can stay with my current slate of providers in Milw and at UW (all out of Deans network) and in the next 3 months we will take their reports or if need be get letters from them stating why they are the doctor needed for my care/why they have the specialization to treat me and why they feel I need to stay with them and not an in-network provider (and my Case Manager has said in the past she has stepped in and said to Dean drs who said they could treat one or 2 of her super-specialzied (rare disease) patients and asked the doctor(s) if they realized what they where really going to be getting in to and then those doctors in turn agreed they probably didnt have the resources and expertise to care for her patients. It will be extra work but what am I going to do?

Dean is continuing to work to set up their own 'specialty pharmacy' designation with Genzyme so they can receive and ship the Aldurazyme from their office in Madison to CHW in Milw (continuing to pay for it up-front before it is ever shipped which is many moons more cost effective and saves more paperwork in cases like having it shipped to the hospital when in-patient.) but in the mean time the drug will cont to ship from Walgreens Specialty till about Sept-Oct to CHW.

The other stumbling block with this change we are trying to figure out is if I can stay with my current PCP and get an 'approved out of network' PCP designation with them to - my Insur Case Manager had thought I had to have a in-network PCP so ive asked around a little for any suggestions but at the same time the middle company that negotiates policy changes between BDUSD (school-Dad and Dad's union) and Dean Health Plan each year said something in 2 separate emails back and forth this morning I may be able to get a approved out of network PCP meaning my current PCP who is Internal medicine can stay on my plan/care and just be designated out of network but have authorization as needed to do PA's/referrals for any specialists (which in the past year we've only had 2 or 3 new (and in several cases temporary) drs reffered by my other specialists due to surgery issues or other issues so I dont think it would be alot of extra (??) work for them then it is now? Granted the past year has been pretty crazy with all the surgeries but at the same time thats pretty well why id like to stay with my current PCP especially bc her NP is so familair with my care, my current specialists (especially Dr.Bragg's team) and they get stuff done quickly especially all of these pre-ops we've essentially needed at the last minute just days before shunt surgeries... Since Dr.Bragg came on my team its like any PCP issues have really worked out I think because any Neuro issues where taken off of their slate and taken over by someone who knew what to do with it...

Otherwise the headaches and other symptoms have really been so-so, last night I threw up clear out of the blue and before I had time to take zofran with enough time for it to work (about 2 mins is all thats needed!) so that was pretty not awesome and the first time thats happened since the first couple weeks I was in the hosptial (when the shunt reset there one of several times). Ive been waking up now in the mornings with the headaches which also wasnt happening and then they tend to slowly improve throughout the morning after a couple hours and afternoons and pretty better though I do get milder pressure type headache. Nights I wake up, fall asleep, wake up even despite laying up-right for the most part (I move around as I sleep so dont always end up up-right).  Vision is on and off - last night ironically it was pretty fine, this morning it's fairly fuzzy/blurry. Rather than call and bother (not that I am really I dont think) Dr.Bragg's team since it's only been a few days and the shunt(s) are atleast partially working or atleast one of them is picking up slack i'll wait and see - maybe it will get better. The one ominous sign is that the mid-back pain is pretty much gone other than here and there symptoms (positional)  vs being almost non-stop on and off before when I had very little headache and very little other symptoms. Appetite is another thing that is always a good sign of how the shunt(s) are working as I am always wanting something to eat when they are atleast pretty good and now I eat a little and not really hungry again.
This is so frustrating, I am frustrated with having just saw Dr.Bragg on thurs, (with my body)frustrated with these symptoms and how we get complete symptoms resolution (as ive said previously) with the external drains and how it seems like we get atleast fairly good results for a while but then go back to having problems over and over. I know its the shunt(s) bc its the same symptoms repeatedly that go away repeatedly its just a matter of what really causes this intermittent (I assume again) occlusions?? Have I said I hate shunts? Its nobody's fault but I still dont have  to like it!

6/-/12 - Sat night-Sun night
It's definitely been an up and down few days which is a little (but I guess not really after this past year?) unusual and definitely frustrating... Ironically mornings are again worse with the headaches but then the mid-back pain is better (something I also often experienced when I had the former LP shunt - when it worked well the nerve type pain was bad (although nothing compared to how this can be) and when it wasnt working well it was next to nothing if any pain at all and that is exactly how it has been now to - no headache then definite ups in mid-back discomfort but if headaches then zero to very little mid-back pain.) Mornings cont as has been the pattern over the past year of these up and down shunt issues the worst and typically as the day wears on the headaches get better although they do ebb and flow just nothing like the mornings and nights are. I spent the day with my Mom and sister and nephew (who is now sleeping next to me) and then had lunch with my Mom, Dad and sister + her family + went swimming at my parents (they swam, I took pics just wasnt willing to get in the water with it being in the 70's!) :)  The morning was was the same yesterday was needlessly so roller-coaster-ish but I wanted to do what we where doing so I just tried to play around with the pain management protocol I have and bear with it (and as my sister said last night(fri)  when we all went out for supper "tended toward being quiet as a church mouse" which is a usual give away of when I dont feel great - I dont say alot and instead listen more. I would feel fine, then the headache would come on and then I wouldnt have a headache and feel fine, then the back discomfort/nerve type pain would come on and was over and over - it was pretty sucky actually but what was I  going to do? I cant exactly let this dominate my life more than it already does - I want to do things with my family and so force myself out of bed, to get in the shower and to drive over to wherever we are meeting to do whatever we are doing bc it makes me atleast happy and a good distraction. Besides usually by the end of these days then my joints hurt so I think less about how the other stuff is! :0)! Tomorrow (sun) we are meeting at my parents (yup a very family weekend) as my brother, sister-in-law and niece are also coming up as is my sister and her family again and my nephew and I after church are going over to spend the afternoon swimming and have supper with my parents, pretty fun really. I probably will even get in the pool tomorrow after taking more pictures as it really does get pretty warm in the water and in all actuality is pretty fun with all of us messing around! :) Distraction as they say. :) I figure as long as the headaches stay the same I am just going to let it be for now, as its bad but not horrible yet and maybe its just that  one of the 2 shunts has reset or one of the shunts has occluded again, who knows but I really have no desire to visit Dr.Bragg so soon even if she and her staff are so super sweet.  I am just hoping this will be an intermittent thing and works itself out. It could happen, optimism is key and as I always say 'one day at a time!' :)

I talked to my Physical Med-Rehab drs office (separate from my Pain Management dr and my Neurosurgeon although referred by my Pain Mngmt dr last year)  and we've scheduled botox injections for my neck/shoulders, down cervical spine and thoracic spine for next thurs which if nothing else will/should help (as it did last year) the muscles type spasms I get in these areas with almost any fwd type movement either while sitting (for instance typing) or when sitting on the floor or even when trying to sleep and with little things like washing hair, etc. These where always worse after the previous LP shunt (first time around but prior to first botox) and then we thought of trying botox last year previous to seeing my new (not new anymore but then) neurosurgeon  and it helped a great deal. I did it 2 different times 3-4 months appart about 30-some injections and then after we removed the non-working LP shunt I didnt have the same or as bad symptoms so didnt have it done again but with this 2nd shunt (the added back in LP) the symptoms mimic muscle type spasms and so going to try it again. I sent a message to all relevant drs to make sure it was ok given the LP shunt catheter sits up in the thoracic spine but I cant imagine the botox could affect the catheter/shunt function in anyway.

All for now - sorry this tended towards long!

Erica