Friday, February 10, 2012

Mindless thoughts, good info to?

Things on my mind today:

Some providers are high on my list of ones I prefer to work with while on the other hand  one or two of their secretaries are low on my list of support staff I enjoy talking to/working with. (and over the years ive gotten to be close friends with very many support staff.) My infusion nurses and I text. email and share facebook comments so I dotry hard to be kind, be patient and not be annoying! The reason I write this is because when you have a dozen + different specialists and you get ones who never return your calls or you have to keep calling them despite leaving VM's in hopes of catching them in does get old fast - I completely get that we all at times forget things but with some secretaries it is EVERYTHING  and EVERY call it seems like they never return. Yuck!

-Thinking of things i'll need to do before the next time I travel (get a letter from my PCP stating I can take drink on to plane - most often security will jsut let me when I explain my situation but on occassion harkening back to "you dont look sick" some security will simply refuse and I end up paying for drink after security. Not always a big deal but sometimes it is.
- My neurosurgeon has given me shunt cards for each of my shunt valves (one is PS Medical-medtronic and the other is Paedi-gav) but both are fixed pressure so no concern with airports. I'll have to doubly make sure to get a new updated shunt card with the programmable info and keep the card on hand when traveling , although I normally do just get them laminated and keep in my purse with her info.This is because airport screening can reset the magnets in shunt valves and so pts typicaly get waned instead.

- Talked to Dr.Kaplan at CHOP and she expects skin biopsies to be done in a few weeks (the testing) and if a significant amount of ours turn out/react positive to the ataluran (study drug) then they will file for a IRB for human trials. This is a drug already in trials for CF and DMD so should be less hard to get a trial approved but she thought this could potentially happen before the end of the year, (again if biopsies are positive results).

- Very looking fwd to vision improving and hoping this programmable shunt is the trick - going to ask about who she recommends for Opthalmology at her hospital. Pain Mngmt dr today asked if I had saw the Neuro-Opthalm she recommended at Medical College-Eye Institute but I havent simply bc makes sense to see a Opthalm at Dr.Bragg's hosp so communication can better occur.

- Lisa from Dr.Bragg's office called late this afternoon they are trying to schedule surgery for next friday but Dr.Bragg's schedule is full so scheduler is working to try and re-arrange her surgeries to get me on. My thought? Clearly spend to much time with a doctor when they will rearrange their schedule on many occassions to try and accomodate a patient of theirs so as to not let pain go on for long, and as little as possible. I appreciate their kindness as she did this with her tight schedule also on weds when she doesnt otherwise have clinic. She took an hour of her time to see us anyways. **The other nurse called and confirmed that surgery will be this fri and the NP called fri night to go over UA pre-op questions as we need this to be clear so Infectious Disease docs can clear isolation measures from my file. She faxed over the previous UA 'bug' results to my PCP and will do the test on monday before ERT. No pre-op required as we beat the 'every 30 day' requirement by 3 days with surgery being on friday.
- See Neuro-Endocrine dr on tues - will be ineresting as certain hormones really seem to have been affected over the pre-ceding months secondary to the shunt issues; some improve when the shunts improive, some things didnt and some things are jsut plain new. I plan to ask her if she might be able to her me rgaph my hormone levels over th past few years pos-initial shunt and revisions and  give this to my Nrsgn just because. Since this dr works with the Neurosurgery docs at FMLH she knows issues with hormones secondatry to pressure issues inside and out and has been an invaluable provider on my team. I hate having surgery, period but especially hate having it on friday's so am dreading next week and the weekend. It also basically ruins my parents weekend off from work which sucks, even though they dont complain I still feel bad. :/

Pain Mngt dr in few mins we did talk today would like me to have a EMG (nerve conduction) done on my very low back and legs to see where numbess in my leg is coming from - it could be form the spinal nerve injury although it is in hte opposite leg more often than not over the past 2-3 weeks so I am unsure whats causing it. I will talk to Dr.Bragg (as she acts as both neurosurgeon and neurologist for me now) to see if she thinks the test would be helpful to her/would it change any outcomes. Definitely not that I dont trust PM dr just that isnt fair to not run it past Dr.Bragg since it s an area she has been managing.

Saw my nephew today (my niece was sleeping) and felt badly for him - I love that kid to the moon and back and in many ways I get him bc my life isnt a normal persons life and neither is his but he constantly reminds me that even in the middle of bad moments we can stop, re-assess and be ok. As he always says "It's no big deal" - this has become something of my own mantra lately along with my long held 'one day at a time, one week at a time' as that is the best I can do and it allows me to not worry and just enjoy what I have now. Like I always say doesnt mean you dont stop planning for say 2 weeks from now or the future in general just that when it comes to every day you take whats here now and try to enjoy it as it is. Like Zander with his 'It's no big deal; and fully knowing he doesnt always believe himself when he says this or sometimes he says it like he's asking permission for something to just be ok I also have times where I fail at my 'one day at a time' but we're all human and you do the best you can do!
More to follow,

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