Year of Change; 3rd yr Patient Partner (MPS I)

This has been a really difficult post to write though I can’t really say why!? I went back and was reading Anne Burtenshaw (and her husband Ed) entries from the last 2 years and realized I just needed to stop over thinking this and write!

RFRD-Team-MPSI’ve been pondering this for weeks, pondering what to write and mulling over everything about the RfRD Team this year along with other changes in my life. I’ve talked to Jessi several times about how different this year feels and confessed how silly I felt having mixed up the changes (not initially realizing Jessi and I weren’t still partnered while I also gained 2 new runners). Jessi in her wisdom pointed out it isn’t as if we’re not still partners and as if we can’t hang out Marathon wknd and especially my not being her partner doesn’t mean we can’t still cheer each other on (in my case cheering her on running).

I have been writing myself notes re what to write or include for the running blog but honestly I don’t think i’d have ever got around to writing if I just didn’t force myself to do it! I write a blog related to my own medical issues and typically don’t have an issue with that although there to it is honestly more a dialogue on what is going on with my medical stuff then it is anything very personal.

The blog has been an outlet of sorts for me over the last years through my diagnosis, endless appts, countless (literally) surgeries and through good times and bad. I thought perhaps if I wrote this post as if I were writing for my blog it might be easier but no such luck! I’ve often shared that I started blogging after I was diagnosed b/c I had wished when I received my VERY late diagnosis of MPS I that there had been a blog or someone’s website I could have read to get a personal account of what they experienced. I blog to try and help other newly diagnosed adults (and families) and so I decided while this isn’t going to be like that, maybe I just needed to try and look at writing this from a ‘how is this year affecting me’ perspective? I can’t promise this is the best entry every written nor the most captivating but between this and my 2 posts the past two years, you can gain a little insight in to who I am perhaps.

This is my 3rd year on the running team as a patient partner, my 1st year with new runners and my 1st year not staying with the friends I’ve stayed with the past couple years. The Siedmans are a family who also has been touched by MPS, the disorder I live with, as their sweet son Ben had MPS type III (Sanfilippo) which falls in the same family of MPS that I have, the only difference being each of our disorders is caused by different missing/deficient enzymes. My 1st year with the RFRD Team I was partnered with Jessi who was lovely to get to know, and this last year she and I remained partners while she also graciously ran on behalf of Ben who had passed away in Febr. just 2 short months prior to the Marathon.

This year Jessi and I are no longer official partners as the Running Team expanded and admittedly it has been different, almost like a loss BUT i’ve gained 2 new, wonderful running partners who live in Tx and whom I have been slowly working to get to know. I am grateful Melissa and Molly want to be part of the RFR Team and chose to run on my behalf and for MPS Awareness! Both Melissa and Molly will be running in the Providence 1/2 Marathon and although I cannot be there (a mistake and misunderstanding on my part on the team set up/partner set ups so I had made arrangements to be in Boston during the Marathon and coordinated this with an Appt I have in Boston). Thankfully I have friends who live in Providence who also are part of the MPS I world and who are planning to be at the Providence Marathon AND of course many of our RFRD Team members who are not running in the Providence races or who live in that area and are Patient Partners/Families are going to be in attendance and all have promised to cheer on Molly and Melissa for me! Yay!! I honestly can’t wait to see how my runners do and to see pictures of Melissa in her purple tutu (purple for MPS!)!!

This year has brought so, so many changes both to the RFRD Team and to medical issues going on in my life so I am grateful to continue to be part of this team and community and to be surrounded by families, patients and friends who truly understand what “rare” means! MPS truly epitomize what ‘rare’ (ultra rare really) means but when amongst friends and partners from this RFR Team I don’t feel quite so ‘rare’ and instead I just feel a part of a small, awesome ‘community’!

At the same time, honestly I have wondered if I should even go to Boston this yr, given the complications of my MPS and how awful I’ve been feeling lately. I really try to not let MPS dominate my life and sometimes these last few months it feels like this disorder has had the upper hand. I try to find a balance between symptom management, managing issues and living my life and I feel like going to Boston to Marathon wknd is so important.

RFRD-Shirts-MPSWhy do I share these things? I think honestly b/c this Team is a place and a group of people I know will understand if I came to Boston and I didn’t feel completely wonderful the whole time but I still wanted to be a part of things b/c often the times to be around others who understand is so few and far between. I feel like even though we all on the Team (patients/families especially) experience different disorders we still all experience many of the same feelings of trying to not be defined by what we have and trying to not let what we have overtake our lives while also trying to find a balance between caring for ourselves and living as normal a life as possible..

I am so grateful to continue to be a part of the Running for Rare Diseases Team and to Jessi for being my runner these last 2 yrs and whom I’ll be cheering on this year too, and as well to Molly and Melissa, our Team newcomers. I think it has been a little difficult for Molly and Melissa being so far away to feel especially a part of the RfRD Team and I know we’ve struggled a little bit BUT I hope both know I am very grateful for their joining the Team and for wanting to raise awareness of MPS! I am sharing pics of the ‘Team MPS’ RfRD Team shirt I had made to include Jessi, Molly and Melissa so the whole world knows 3 special people are doing a really awesome thing running on my behalf and having raised awareness of MPS over the past 2 yrs (Jessi) and this yr!

http://running4rare.org/2013/03/13/ericas-story-living-with-mps-i/ – 2013 entry (my 1st RFRD year)

http://running4rare.org/2014/04/05/bens-dream-jessis-run-our-day-mps-awareness/ – 2014 entry (my 2nd RFRD year)

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One comment on “Year of Change; 3rd yr Patient Partner (MPS I)
  1. Anne Burtenshaw says:

    Erica, it is going to be an amazing long weekend in Boston and we are looking forward to sharing it with you.
    Anne.

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