It was a bit if a terrible day emotioinal and physical wise as I wanted to be home so badly by my cats and had so many things on my mind I wanted/needed to get done (pay bills for instance!) and thinking about seeing my nephew(s) and friends/family and on top of we stopped the PCA pump. I totally had thought stopping the pump would go alot better than it did and it did not. Within I think a 1/2 hour I was miserahle and in such pain - not like when I was re-admitted but still really crappy feeling. and nauseous on top of ths I think because of the pain. My neurosurgeon happened to round later than normal so she saw me in discomfort and we talked about what we could change. They added a 3rd dose of the nerve-calming medication Lyrica, another med for muscle ttype spasms (ugh, totally aweful as muscle or something like jump without notice and sometimes twice in a row almost in opposite directions it feels like - yikes! They also on top oif the additional oral immediate release morphine left a IV morphine PRN for now. I am so grateful my neurosurgeon cares, can read me so well and wants to get this all under control but at the same time I was sad as I just really had wanted to go home. I am hoping in the next day or so as it has been almost 2 weeks since I saw my cats and almost 3 weeks since the surgery. Even Dr.Bragg said today, something like "I know you just want to go home, right" when she asked a questioin. I also feel bad as I know my parents have a life and they have to work full time and have spent so much time driving back and forth to see me after work (an hours drive) after work during the week and weekends.) I am so grateful to have the parents I do and feel bad they have had to take so much time when I am very sure they are already tired.
I have been having a really hard time with people asking really often "when are you going home" or "why are you not home" ot "are you going home today" not because I know they dont care but just because I hate being just that girl with MPS (and yet I realize I am more than that) and even more I think I hate focus being on me, I have never as ive talked about before really gotten very comfortable directly talking about how I feel about my situation except to occassional people. I think I also struggle with feeling like people think I should be home when I know it's really more up to Dr.Bragg and also I know I generally look better than I feel. There are a few people who are very good at telling when I dont feel well (Dr.Bragg and her nurse have gotten supreme at this) regardless of how I am dressed as they can tell from my face and eyes. I feel sometimes like im disapointing people by still being in the hospotal to, I dont know why but I guess maybe because even for my parents they really get to know only what I tell them regarding what Dr.Bragg is thinking and I am not always very good at re-expressing what she or other providers say. I think sometimes I should ask Dr.Bragg would she call my parents in a conf call (im sure she would) to explain her thoughts and feelings to them as then I wouldnt have to feel like I wasnt doing a good job.(and even I dont mean to make it feel like my parents make me feel like im not doing good at telling them whats going on but I know they wish they had more information). We will see I guess...
So I havent really talked about it but the advoacy group I mainly work with APFl closed as of last week and it has been kind of sad as this is a group I have worked with for the past 3+ years and which I feel like in some ways guided me back to realizing I was a person despite having MPS. Not that MPS defined me but just that I could do something also outside of my disorder and also in some cases combine these 2 passions. I had to apply for this position, get 2 reccmendations of which my Pain managemtn dr and another doctor wrote for me and I did a phone interview to get the position. I have loved that I got to work with APF according to my schedule ie some months I was super busy and other months I was doing alot more background advocacy (of which I loved to) and was jsut a really great group of people from all areas of life; professionals, patients with pain, etc . My regional manager was right here in Madison, it was just fantastic. I worked with organizations like ASPMN-WI, UW-Pain Mngmt Coords., APM-coordinated a support group and also did a run/walk together and many other opportunities big and small. APF closed due to economic and other reasons and one of APF and APFANs employees wrote the statement/paragraph below and I just had to share as it applies to not just pain and APF but to ALL advocacy effotrs big and small everywhere.
“I am reminded of the definition of a movement. A true movement is more powerful than just the people and organizations who partake in it. A true movement does not begin or end with any one organization or a group of people. A true movement lives on in the hearts and minds of those committed to it – spreading from one person to the next, strengthening over time. And in that sense, fighting for the rights of people with pain is a powerful and sustainable movement with or without APF. I have seen how passionate each of you are in your work and your support. I have seen the insane strength that so many of you have to fight your own internal battles with pain and simultaneously fight discrimination and the injustice of the pain world. This energy amazes me every time I witness it. This is the energy that feeds this movement and makes it powerful and contagious. I feel confident that this energy will move all of us forward to what we each do next and to exactly what needs to be done. Perhaps some of you will work together with new leadership, create leadership within, or perhaps join forces in other organizations, but all the while carrying the same, powerful intention - fighting for the rights of people with pain - strengthening the movement.” - Elin (APF Manager)
As I think I think I mentioned yesterday in a different post I received a different oppotrunity through another group ive done a little collaborative efforts since last fall to work for their group and I have a conference call tomorrow (weds) with them to learn more and get details. I am really excited! I also have been working on a resume and addendum to apply for a FDA Patient Representative position which is a position that patients can apply for to get involved with their particular disorder and patient advocacy and research awareness. I am super excited to try and get one of these positions. I dont know if I will but it sure cnat hurt to try! This is hte link to the program:
http://www.fda.gov/ForConsumers/ByAudience/ForPatientAdvocates/PatientInvolvement/ucm123858.htm#reimburse
More soon,
Erica
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