Today I did a live interview on BlogTalk Radio almost entirely on MPS Awareness: If this link doesnt work go to my fb page:
http://www.blogtalkradio.com/winninglifethroughpain/2012/07/19/erica-thiel-lives-with-mps-i-huler-scheie-syndrome?fb_ref=.UAilvvd42XI.like&fb_source=timeline
7/12/12 - week of
Saw new (potential) PCP today and while I was really nervous (which sometimes I get and sometimes I dont with providers and especially new providers) I really liked this docs approach and she seemed genuinely interested and even despite her knowing I may still chose the other PCP-Family Practice doc I am also 'meeting/interviewing' she gave a few potential suggestions to possibly improve my care. She didnt want to just implement it without my talking to my Endocrine dr as she commented "I dont want to step on any toes" which I really appreciated her not wanting to just do something but being interested in potentially improving my care and she commented that if I do chose her as my PCP she would in the future be moret than willing to reach out to pertinent specialsits regarding my care and helping it be more fluid and/or if she had questions or possible suggestions which I like that. In this case one of the suggestions that pertained to my endocrine dr (who is one of the drs that was approved as an out of network specialist but in-network auth.) was potentially having a 'rescue drug' (not entirely sure what that is) for times when I would normally take an increased dose of the cortisol-stress dose replacement but may not be able to keep it down such as if nauseous/throwing up. Cortisol replacement is something I take 2x's daily to replace the cortisol my body is not making properly and helps control many of the bodies normal functions including reactions to little and big stresses and is a drug replacement that is given in a much higher dose by IV before any surgeries or procedures as well to help the body cope and without the replacement the body can have severe issues. ----*Update to this my Endocrine dr is prescribing and having me do a class at her hospital on stress dose emergency Hydrocortisone (solu-cortef) replacement which is given by IV at times when I wouldnt be able to keep down the increased hydrocortisone dose. My insur is being ridiculous about covering the solu-cortef injection (nice, huh!?) so that is being worked out and I set up the class for 2 weeks from tomorrow to give time.
I think the biggest but maybe not big thing is for the past few weeks (maybe longer?) is losing my balance even when I am just standing in plaec or walking but doesnt happen bc I am dizzy episodes or bc I tripped over something. Its very unusual.. The other day I was at the local raceway and stepping over one of the seats (no back and cement) to get to the neck seat which was plasticky and had a back on it and anyways my Dad, sister and brother-in-law where going to sit in front of me and just out of the blue I lost my footing for no apparent reason and almost toppled my Dad who is a big guy at 6ft some inches and over 200pds - needless that was comical and a bit embarrassing.
The LP shunt is rubbing on a nerve or something in my low back which is quite uncomfortable and worse w any amount of standing and laying on my stomach - and also well causes pain right along my L side which is actually not the side the shunt is tunneled around but my nrsgn had thought it had something to do w the spine she thought the catheter was sitting on. I am hoping this improves as it goes around to my left side and ooh fierce! I see her in 2 weeks and my niece will be here so will find something fun to do in Madison likely before w Lis. :) Hopefully will be feeling ok the week Lis is here, right now I have really good times and H/A's are mainly worse at night or mornings and improve after a few hrs and otherwise just vision ebbs and flows.
Cardiac med I got permission to increase the beta blocker for breathing issues so hopefully does the trick asd at the 1/2 dose it actually did make a difference to.
The only other thing is insurance, lots and lots of time spent on insur stuff (ooh joy) and trying to figure out a way to stay w my current Pain dr who is trying (for the 2nd time) to become an in-network provider w my insur plan and today told me she wanted me to stay w her, that we have made such good progress together (so true!) and she still had ideas + she would miss not having me as an insur. I am praying so hard something works out!! She is AWESOME and one of my best providers on top of has ALWAYS trusted and believed in what ive said be it the shunt or other symptoms - never any second guessing which the same cant be said for all of my providers though now I have a pretty great bunch. :)
This is about it for now, if you listen to the interview or even parts of it let me know what you think - not my first radio interview but first one live!
Erica
Thursday, July 19, 2012
Monday, July 9, 2012
A few new things; new update.
This is another one of those "started it a few days ago (last thurs) and finishing it now" posts. :)
I saw Dr.Bragg (her NP whom I also really like as Dr.bragg had an emergency surgery) last thurs and since Dr.Bragg was in surgery she gave the ok to Sue and Emily, the NP's to reset my shunt which re reset the LP shunt back down to 1.0. I think it has made a difference though it is a little hard to tell in the mornings as those are still not great (which is weird bc with the external drain for instance mornings where not a problem nor where they with other 'revisions'. Weird I say! Anyways but the rest of the day has been improved, not perfect but id say a 6 down to a 2-3 which i'll take and just really hope it lasts and doesnt re-clog or intermittently clog or whatever it was doing before we did all these serial shunt taps and re-programmed it to 1.5 or 1 1/2 weeks or so. I also gained about bit of weight back in the past week so thats a good sign as from the point of being released from the hospital just over a month ago to early last week I had gained (the month in the hospital) about 10 pds to 123 and then by last week was down to 106 and now back to 115 - same scale so I know it wasnt a fluke. I 1/2 joke the best weight loss program might be a shunt for anyone actually trying to lose weight.. :)
I saw Pain Management dr last week and she commented how she'd really like to do some kind of intervention like RFA (radio refrequency ablation) but had concerns with my having had the Central Nervous System (CNS) infection only 6 months-ish ago as well as the placement of the 2nd shunt all the way up in to the thoracic spine and the decompression (laminectomy) surgeries in my lumbar spine so she didnt feel comfortable doing those interventions. Instead (and I am ok with not doing anything invasive!) we are tweaking the meds starting with the lyrica dose and upped the butrans patch dose in plan to be able to drop the MSIR dose and so far is helping. We may switch or add a neuro-modulator (family that lyrica is, works on nerve signals) at soem point but will see at end of month appt.
I went and picked up (about an hour drive - thank heavens I like driving, find it somewhat peaceful is all I can say!) and faxed the PMR and Pain management records on fri (and they didnt get them, grr for what I paid!) to my Insur Case Man. to see if Deans Pain docs want to take my case (pray they dont!) and also found out my Pain Mngmt drs office is re-submitting to DHP my insurance carrier to try and become an in-network plan provider which would mean I could stay with her. When I first switched to DHP her office/insurance person tried to get in with Dean but they told Dr.B's office they werent accepting new plan providers at the time (weird, hey!?) - I appreciate that my Pain dr is trying to keep me under her care - and that she cares that much bc she is one of my best providers! We have 3 months to work things out. I still would need a PMR person for the botox so the recommended person there is one who my neurosurgeon worked with a bit while I was in-pt as apparently Deans PMR doc doesnt do botox injections according to her nurse. We will see.
This week I see the 1st of the 2 potential PCP's so im curious how that will go - I see the other one in beginning of August which is when I set up the appt for due to a bit of a crazy schedule this month. (though august we are doing a family day and I also agreed to watch my nephew 1/2 a dozen days so will probably take him to the zoo or something atleast one of those days. I emailed with both of these PCP's so I hope the appts go well - although if I like both drs im unsure which i'll chose. The Family Practice dr is closer but it depends on their approaches I guess and really it is mostly pre-op stuff and paperwork (god help em' maybe they should instead run for the hills?!) =)
Otherwise for the 4th I spent the day down by my brother, sis-in-law and niece and we took the boat out on Lake Michigan for the fireworks which was pretty awesome and a nice day all around. I am headed down there again in 2 weekends for another day called 'Fish Day' which is a parade, classic car show on the bluff, carnival stuff, more fireworks, etc. Always a fun day. They also came up to my parents sun and so along with them and my older nephew who just turned 10 on the 7th we swam and had more fun.
Tomorrow (tues) is the first new-potenital PCP appt and before hand having lunch with a good friend in Madison which will be fun and nice as we've been trying to match our schedules for several months now!
'Work' has been going well and love how fexible it is and must admit the extra money is nice - I used part of the last check to buy a portable dishwasher which should be here. I also love how its stuff that ultimately will help me and is just all around interesting! Perfect in many ways for a job for someone in my shoes! :)
I'll update soon or try to anyways!
Erica
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.
Erica
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. :)
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.
Erica
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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