In this season, I have been delighted to dive deep into building the Grace + Goals Community. In doing so, the blog has taken a backseat other than sharing my goals. Today, I want to share what is ahead and how that will affect my presence here (here meaning the blog, Grace + Goals, and IG.) In this blog there are three sections: what is ahead, how you can support us (registries), and what to expect from me in the months ahead.
With EDS, most can’t really escape major orthopedic surgeries for forever. I have been fortunate to only have had small surgeries and procedures here and there. I have put off hip reconstructions and other large surgeries, as the majority of EDS patients don’t want to open the door of orthopedic surgery until they absolutely have to. EDS bodies are difficult to operate on between the structural failures of our collagen to the complications that multiply with every added comorbidity they have, I have four diagnosed comorbidities with two more we are in the process of determining.
I have been able to be treated at one of the most incredible EDS clinic for 5 years (and 3 days to be exact); they have kept me as stable and functional as possible. Despite their clinic being in Rhode Island, I go 2-3x a week for joint reductions, and as brutal as they are, they have helped me delay surgery while keeping me going. Everything from extra-oral/intra-oral jaw reductions to vertebral rotations to ankle reductions – they do it all. All while having with true compassion for every EDS patient and treating them with the highest level of knowledge about EDS, EDS subluxations/dislocations, and the comobidities associated. To add the cherry on top, they empower you (and your caregiver) to learn how to reduce most joints and move your body safely so, depending on your case, you are not dependent on them. If EDS had a primary care, Muldowney would be it! (Even if you don’t live close by, they offer a book that teaches you, and guides whoever your provider is, the basics about how to get started in caring for your body best. I wish I had this book before I declined the way I did because I think it would have given me more mobility, but that’s a story for another day. I’ll leave the link here. Know that I do not get any commission nor did they ask me to give them a shoutout, I genuinely recommend them and hope their knowledge and care is life changing for you too.)
I also do not want to discount all that the compassionate medical teams that care for me have done for me between specialized doctors and their practices/clinics, my home-care nurses and suppliers, counselors, and brace team to help me live the best life I can with this body. It is not lost on me how generous God has been in honoring how hard I have fought to find the right practitioners so I could replace the harmful ones, all while cultivating a close knit support system between my family and the best four friends a girl could ask for – I love you Maura, Lauren, Sam, and Bethany (by the way – you can have four BEST friends – I will die on this hill!) This is not a humble brag, this is God’s goodness, and if you do not have the right people on your care and support teams, I am saying a prayer for you right now that the Lord will give you endurance to fight vulnerably and wisely to find those people (even if it takes you 10 years, like it did me, or more.)
What is Ahead…
So with all that being said, after over 2 years of exhausting and excruciating weekly lower leg reductions, I will be enduring a two part surgery starting on November 15, 2022. I will be having an ankle reconstruction, and when they are in there, they will also make a “game time decision” about doing a reconstruction of my syndesmosis as well. The second surgery will be approximately 6 months after, where they will do a tib-fib joint reconstruction. Now every EDS patient is different and recovers differently. As I share about some of the pieces of the recovery plan that was made for me, it may not be/look the same for another patient so please keep this in mind.
For my case, my doctors went back and forth heavily about the failure rate and if we should just skip these reconstructions and head straight to an ankle and tib/fib fusion. After careful consideration with extremely open conversations, multiple opinions, and honest assessments, my team has decided to do these two reconstructions before going straight to a fusion; all while knowing that at some point (hopefully not for at least a few years) I will very likely need these joints to be fused.
Any surgery on an EDS patient – especially orthopedic – comes with a lot of risk and potential for complications, even when the surgeons do everything “right” and the patient does everything “right” to recover. We know that once you “open the door” of orthopedic surgery, EDS patients cannot simply “close it,” but I have peace of mind knowing that we have confidently exhausted every other non-reconstructive option available to us. This recovery may not go the way we plan, so I am trying to act on the truth that I can trust God with this, prepare intentionally, and instead of worrying – focus my energy on doing the best that I can with the body that I have.
How you can come alongside us in this…
My team, again for my case, expect a 5-6 month recovery from this first one with a 4-5 month recovery from the second half. There are so many hidden expenses that come with these surgeries, and I am so blessed to have been asked by our community, church family, and this online community here how they can best support Jared and I in these next 11 months.
Between the cast itself, the other subluxations and dislocations that will come, and the nature of this recovery, I am in need of some new clothes, medical devices/aids that insurance doesn’t cover, and some items to help Jared take care of himself so he can better take care of me.
Your thoughtfulness and generosity inspired us to create a list of 25 items between a Target registry and an Amazon registry that we need in preparation for this surgery. (I also included safe snacks and blood sugar supplies/ gift cards that we use most often in the Target registry, but they are not apart of our 25 most needed item list.)
Between the two, I have given a rating of 1-25 so that the items we need most can be easily seen. The most important items are marked “most wanted” on Target and “highest priority” on Amazon. It is really hard to ask for help and extremely humbling for me to share this news with you and these needs. It feels wrong to ask for help as I never want anyone to feel obligated to give as your prayers and encouragement are treasured blessings on their own! But I thank you for making a safe space for me to ask and share.
I will link both registries in the buttons below along with the most needed items from each list, if you feel led to support us in this way in this season. Again – your prayers and encouragement are so so so appreciated and bless us greatly.
Most needed items:
- Joggers: I will be in a cast/braces for a lot of 2023 between the two surgeries, and will be cutting most pants to fit the cast as I don’t want to cut up all of my favorite joggers and sweatpants that I own and love.
- Wide Leg Pants: I will be in a cast/braces for a lot of 2023 between the two surgeries, and will be cutting most pants to fit the cast as I don’t want to cut up all of my favorite sweatpants/yoga pants that I own and love.
- Lounge Shorts: I get lots of hot flashes from being in braces all the time and need some that will easily fit over the cast that I know are comfortable.
- Heated Blanket: Jared’s favorite electric blanket died last year, and it gets cold in the hospital and our living room, which I am perfectly fine with, but he on the other hand is not. This would bless him greatly.
- Button up pajamas: easier for inpatient stays and shoulder dislocations (mine are super worn out.)
Most needed items:
- Portable Mattress Pad: Jared needs to be able to sleep comfortably while I’m inpatient and as I recover downstairs for the first 2 months so he won’t have to sleep directly on our very unsupportive couch. (His old portable mattress is so worn out and desperately needs to be replaced.)
- Air Compression Boots: These will help with POTS symptoms and preventing blood clots as I will be laying low for all often.
- Reusable Ice Packs: Not only are these the best, but in the hospital they are so much better than instant ice packs and leaky surgical ice bags.
- Slimchicks adaptable underwear: helpful when using catheters and getting underwear on and off with the hip brace.
- SI Belt: my PT has advised us to get this specific SI belt for the first 2 weeks before my hip brace and cast can be securely attached, if I lower this a little bit it will keep my hips more in line and together to give me some additional hip stabilization.
What to expect from me during this time…
As far as social media goes, I will have friends updating my instagram with surgery and inpatient recovery updates in my stories and possibly my feed. If you want to know what is going on you will be able to find it on Instagram @officialcassiemnolin.
As far as Grace + Goals is concerned, I will be pausing the Accountability Collective until January 2023, I will be offering 1 on 1 Powersheets Prep Work Coaching starting mid-December (only 5 slots available), and if I am recovered enough I will still virtually host the free quarterly G+G Community Call on December 27, 2023 at 6:30 pm EST for us to do our Powersheets Year in Review together!
I plan to share most updates and content over on Instagram in this upcoming quarter. Thank you for all of your support, grace, encouragement, and prayers as I go ahead with this surgery on November 15th.
Cassie Nolin is a married spoonie who lives the chronic illness life with EDS + Co. (Ehlers Danlos Syndrome and it’s comorbid conditions.) She challenges others to choose grace over guilt while goal setting, and is in ministry part time serving the online community through Grace + Goals and The Spoonie Study. She loves planting, confetti, hand lettering, and sharing the hope she has found in Jesus. Her blog, Living the Chronic Illness Life, is in the top 100 chronic illness blogs and in 2019 she launched her podcast, Chronically Cultivating, where Cassie encourages women to live authentic and intentional lives through their diagnosis’ not in spite of them. She is on a mission to help other women learn how to trade guilt for God’s grace and control for confetti! You can learn more about her at www.livingthechronicillnesslife.com
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