Thursday, October 6, 2011

Why i'm blessed...

Why i'm thankful....

Sometimes you dont realize the hidden blessing in a seeming problem until many years later.. These days one thing I realize is how in a somewhat twisted way I am blessed to not have been diagnosed with MPS until I was older. Sure I wish perhaps I had been diagnosed a wee bit sooner and wish I had not had to defend myself and my symptoms to so many people but on the other hand I am thankful that MPS does not define me. Because I was not diagnosed until a very older age (in MPS terms)  I never had to find out if I would still be the same stubborn, independent person today that I am if I had in fact been diagnosed as a kid. I never had to grow up trying to figure out who I was as a person separate from this diagnosis and I never had to worry my parents would treat me differently than they treated my 4 siblings. Do I think my parents would have treated me differently? Probably they would not have because in our family independence, stubborness and being strong willed where instilled at early ages. My parents taught us and showed us that we could be our own selves and could have our own beliefs - that we need not follow everything others did but we could also do anything we wanted whether that was going to college or whether it was getting a job and working right away. My parents made us work throughout high school to buy cars, and pay car insurance and to buy the clothes or other things we wanted but they also encouraged us to join sports or do things outside of just sitting at home. Sure as a kid I wondered about little things I couldnt do as well as other kids (jumping jacks sticks in my mind) but I still joined cross country in grade school and basketball and in high school played a year of soccer because I thought that was interesting. In high school I waitressed part time after school my sophmore, junior and senior years and took classes I was interested in when we had more choices our junior and senior year. I took the short course to become a Certified Nursing Assistant right after I graduated and went to college to become something in the health profession, at the time I wanted to be a nurse. Health issues cont'd to worsen and my junior + senior year especially I saw dozens of doctors until a year after graduating I moved to a school I transfered to and began seeing new specialists and eventually landed in the office of a newly graduated (from fellowship) adult congenital heart dr and within 3 months I had the diagnoses. Did MPS become a much bigger part of my life and change my life drastically? Definitely, id be lying if I said it didnt. It took me several years to figure out who I was now going to be - I was very involved in this community and within several months had given my first talk on being an adult with this disorder as well as began being involved with the Pharma co that markets  the weekly enzyme replacement drug I was receiving. Regardless of all these adventures I still didnt really know who I was with this disorder and didnt know what I would do next - I needed something that wasnt necessarily MPS related to be a part of. That came about 3 years ago with my becoming a leader for WI with the American Pain Foundation Action Network. With this I have personal experience with pain and can help others but it also is not about me and my issues instead it is about what can I do to make others lives better, to bring about change and to help others realize that there is still life beyond living with chronic pain or chronic disorders. But I go back again to why im grateful to have been diagnosed later - while I think my parents would have still raised me similarly to my siblings would I have had all the great experiences I did? Would I have been so independent with my health care and with making decisions regarding my own care even as a teenager? (by the time I had a car I was going to specialist fup appts on my own and going to other appts on my own and recognized when issues where important). Would I have relied on my parents to make those decisions still today if I had been diagnosed as a kid? While many people say it's better to take someone with you to appts I am a whole hearted supporter of people with chronic diseases taking on atleast some of their care and when possible all of their care - the insurance stuff, the appts, the doctor decision making and even the ultimate decisions whether to keep or drop a provider.  (doeant mean you dont ask others for their insight or advice or with bigger things like surgeries/procesures have someone go with you) These things all help foster better personal care in my opinion and help the patient to have a better stake in their own care and also be more involved with the small and larger communications that take place around and with providers regarding care. I know it's not possible for every MPS pt to take on their own care and im not advocating that im simpling talking about my own care and my own experiences and how it all shaped  me. I know lots of people have no desire to do their own care but it really is a great feeling when you, the patient are engaged and are the person that providers call, email or talk to when decisions are being made. In these respects this is why I am grateful to have been diagnosed later - sure of course I wish some of the issues could have been treated sooner or diagnosed sooner but overall im glad to be the person I am today, fairly optimistic, not defined by MPS, not afraid to go after something if I want it and ok with having a life that is different from most peoples. Embrace who we are, right?

Next week at our yearly APFAN training (in Albany, NY this year) I was asked to give a joint talk on 'balancing advocacy and self care' - do I have any profound ideas on this yet? Not really, other than one needs to take care of themselves first and do their work second. We are no good to others if first we do no favors to ourselves after all. I will either write more about this before I leave for NY or will write more on the talk after. It is set up as a talk and discussion so should be pretty interesing. The overall meeting and trainings are in conjuction with Albany Medical Center and so it promises to be a interesting few days full of new inormation, new topics and im very certain very tiring to! :) It looks like I will get the chance to see a couple of friends 1 of whom ive been friends with since I was dx'd 6 years ago and 1 whom ive not seen in almost 2 yrs now so that to should be nice!
Take care - God Bless,


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