I walked past my bedroom wall some days ago, a wall that has the poster from 2yrs ago of Jessi (my 1st runner), myself, and sweet Ben whom also had a form of my MPS and whose family I hold dear. Ben was a part of my RfR Team the past couple yrs and always holds a special place in my heart.Â I was reminded again seeing this poster I really needed to sit down and write this post/Patient story before next wk.
ThisÂ being my 4th year (on the Team), I am as excited this year as I was my 1st year. Excited to be partnered with Sarah and looking fwd to cheering for Sarah, TEAM MPS, and for Sarah’s daughter Madi for TEAM CCHS. – We are a mighty Team this yr., TEAM MPS/CCHS!
Iâ€™ve been thinking of writing this for some time now and it truly was walking past that poster that made me quickly stop and jot down a few thoughts Iâ€™ve had sitting on my phone for this so I would finally write this and share a little about what RfRD has meant and con’t to mean for my walk with a chronic, very involved diagnosis.
This past winter and spring have been trying in some very different ways for my health and MPS issues, to my Team (a huge and very difficult change happening soon) and some uncertain but necessary surgeries and medical decisions I faced and continue to face. Coming up on the Marathon next wk, getting to know my runner has been a highlight Iâ€™ve really held on to.
It has been difficult trying to sort out some of the changes comingÂ to my medical team, the loss of a key Provider (Peds Neurosurgeon) and trying to not worry about this all and worry if the new, replacement Neurosurgeon will be as good or caring. Honestly having had the Marathon to look fwd to, chatting with my runner (Sarah)Â this year has been a good distraction and especially because we both know ultra-orphan rare diseases so very well. We both know the distressing nature of losing the very best Providers and worrying how it will work out. Perhaps unknowingly on her part Sarah has been a good support and a good person during the very time Iâ€™ve really struggled with this looming change and uncertainty. Sheâ€™s helped me when Iâ€™ve struggled with symptoms and weâ€™ve both talked often about things in our rare disease worlds we wish where just a little different.
Iâ€™ve been able to bounce thoughts off of Sarah; sheâ€™s bounced ides off of me. We both understand this all bc she’s been through the very same uncertainties and struggles with her daughter Madi and Iâ€™ve been through it before. I think what I found from Sarah is she really understands some Providers just provide a bigger, more key role and are great advocates for our care so to lose that is a loss that’s hard to fathom and not one we easily know how to replace no matter the specialty.
I am grateful Sarah and I have been paired up together for Boston; it is almost like Sarah is my ‘friendship in loss’, I can’t quite say why that comes to mind, other than she’s helped me think through what to do. She’s helped me sort out the options I have in replacing my current Peds Neurosurgeon, which of the 2 replacement contenders to pick and uncertainty I guess in my symptoms and overall! She has kept me from just plain not breaking down when at times I wanted to because this loss is so very hard (nerve wracking perhaps) given how bad the shunt issues/symptoms where at times before my current Nrsgn became a part of my Team. –
Anyone who knows me knows I keep a lot inside and I often don’t worry about the things I perhaps should (3rd heart surgeryÂ this pastÂ Jan?). I am slow to get mad (it takes a lot) but then I worry about things like the coming change with my Neurosurgeon perhaps more than I should. It has helped a lot knowing Sarah understands this very issue intimately; just watching Sarah’s and others stories on RfRD and in my own rare disease community helps in trying to make the best decisions through all that has gone on care and surgery wise over the past 6months. The support in hard times.
To be able to spend the wknd with friends who understand what rare really means, that understand our lives are different but that â€˜differentâ€™ doesnâ€™t mean our lives are bad, and to be around a group of people who are all trying to make a difference in the world for Rare disease pts. yet to come. We are all fighting for a Season of Change – for earlier diagnosis, earlier treatments and better understanding amongst Medical Personnel and Lay people alike. For people to understand our struggles when we do face uncertain changes, surgeries, decisions….
My experiences living with MPS I H/S, 70 surgeries, numerous procedures, weekly infusions, etc.-
A few Prior Running for Rare posts –
Year 2:, Ben’s Dream, Jess’s run; Our day:
Thanks for posting for me Phil!