On this season, I’ve been delighted to dive deep into constructing the Grace + Objectives Neighborhood. In doing so, the weblog has taken a backseat aside from sharing my objectives. At the moment, I wish to share what’s forward and the way that may have an effect on my presence right here (right here that means the weblog, Grace + Objectives, and IG.) On this weblog there are three sections: what’s forward, how one can help us (registries), and what to anticipate from me within the months forward.
UPDATE: Cassie’s surgical procedure has been rescheduled (lastly!) to March 24, 2023
With EDS, most can’t actually escape main orthopedic surgical procedures for endlessly. I’ve been lucky to solely have had small surgical procedures and procedures right here and there. I’ve postpone hip reconstructions and different giant surgical procedures, as nearly all of EDS sufferers don’t wish to open the door of orthopedic surgical procedure till they completely must. EDS our bodies are tough to function on between the structural failures of our collagen to the problems that multiply with each added comorbidity they’ve, I’ve 4 recognized comorbidities with two extra we’re within the strategy of figuring out.
I’ve been in a position to be handled at one of the vital unimaginable EDS clinic for five years (and three days to be precise); they’ve stored me as steady and purposeful as doable. Regardless of their clinic being in Rhode Island, I’m going 2-3x every week for joint reductions, and as brutal as they’re, they’ve helped me delay surgical procedure whereas retaining me going. All the things from extra-oral/intra-oral jaw reductions to vertebral rotations to ankle reductions – they do all of it. All whereas having with true compassion for each EDS affected person and treating them with the best degree of data about EDS, EDS subluxations/dislocations, and the comobidities related. So as to add the cherry on high, they empower you (and your caregiver) to learn to scale back most joints and transfer your physique safely so, relying in your case, you aren’t depending on them. If EDS had a main care, Muldowney can be it! (Even for those who don’t stay shut by, they provide a e book that teaches you, and guides whoever your supplier is, the fundamentals about get began in caring on your physique greatest. I want I had this e book earlier than I declined the way in which I did as a result of I believe it could have given me extra mobility, however that’s a narrative for an additional day. I’ll depart the hyperlink right here. Know that I don’t get any fee nor did they ask me to present them a shoutout, I genuinely suggest them and hope their data and care is life altering for you too.)
I additionally don’t wish to low cost all that the compassionate medical groups that look after me have completed for me between specialised medical doctors and their practices/clinics, my home-care nurses and suppliers, counselors, and brace workforce to assist me stay the most effective life I can with this physique. It’s not misplaced on me how beneficiant God has been in honoring how laborious I’ve fought to search out the proper practitioners so I may substitute the dangerous ones, all whereas cultivating a detailed knit help system between my household and the most effective 4 associates a woman may ask for – I really like you Maura, Lauren, Sam, and Bethany (by the way in which – you possibly can have 4 BEST associates – I’ll die on this hill!) This isn’t a humble brag, that is God’s goodness, and for those who wouldn’t have the proper individuals in your care and help groups, I’m saying a prayer for you proper now that the Lord will provide you with endurance to battle vulnerably and correctly to search out these individuals (even when it takes you 10 years, prefer it did me, or extra.)
What’s Forward…
So with all that being stated, after over 2 years of exhausting and excruciating weekly decrease leg reductions, I might be enduring a two half surgical procedure beginning on November 15, 2022. I might be having an ankle reconstruction, and when they’re in there, they can even make a “recreation time choice” about doing a reconstruction of my syndesmosis as nicely. The second surgical procedure might be roughly 6 months after, the place they may do a tib-fib joint reconstruction. Now each EDS affected person is totally different and recovers in a different way. As I share about a number of the items of the restoration plan that was made for me, it is probably not/look the identical for an additional affected person so please hold this in thoughts.
For my case, my medical doctors went backwards and forwards closely concerning the failure charge and if we should always simply skip these reconstructions and head straight to an ankle and tib/fib fusion. After cautious consideration with extraordinarily open conversations, a number of opinions, and sincere assessments, my workforce has determined to do these two reconstructions earlier than going straight to a fusion; all whereas understanding that in some unspecified time in the future (hopefully not for not less than just a few years) I’ll very seemingly want these joints to be fused.
Any surgical procedure on an EDS affected person – particularly orthopedic – comes with quite a lot of threat and potential for problems, even when the surgeons do every thing “proper” and the affected person does every thing “proper” to get better. We all know that when you “open the door” of orthopedic surgical procedure, EDS sufferers can’t merely “shut it,” however I’ve peace of thoughts understanding that we’ve got confidently exhausted each different non-reconstructive choice accessible to us. This restoration could not go the way in which we plan, so I’m attempting to behave on the reality that I can belief God with this, put together deliberately, and as an alternative of worrying – focus my vitality on doing the most effective that I can with the physique that I’ve.
How one can come alongside us on this…
My workforce, once more for my case, anticipate a 5-6 month restoration from this primary one with a 4-5 month restoration from the second half. There are such a lot of hidden bills that include these surgical procedures, and I’m so blessed to have been requested by our group, church household, and this on-line group right here how they’ll greatest help Jared and I in these subsequent 11 months.
Between the forged itself, the opposite subluxations and dislocations that may come, and the character of this restoration, I’m in want of some new garments, medical units/aids that insurance coverage doesn’t cowl, and a few gadgets to assist Jared deal with himself so he can higher deal with me.
Your thoughtfulness and generosity impressed us to create an inventory of 25 gadgets between a Goal registry and an Amazon registry that we want in preparation for this surgical procedure. (I additionally included secure snacks and blood sugar provides/ present playing cards that we use most frequently within the Goal registry, however they don’t seem to be aside of our 25 most wanted merchandise listing.)
Between the 2, I’ve given a score of 1-25 in order that the gadgets we want most could be simply seen. An important gadgets are marked “most needed” on Goal and “highest precedence” on Amazon. It’s actually laborious to ask for assist and very humbling for me to share this information with you and these wants. It feels incorrect to ask for assist as I by no means need anybody to really feel obligated to present as your prayers and encouragement are treasured blessings on their very own! However I thanks for making a secure area for me to ask and share.
I’ll hyperlink each registries within the buttons under together with probably the most wanted gadgets from every listing, for those who really feel led to help us on this means on this season. Once more – your prayers and encouragement are so so so appreciated and bless us tremendously.
Goal
Most wanted gadgets:
- Joggers: I might be in a forged/braces for lots of 2023 between the 2 surgical procedures, and might be reducing most pants to suit the forged as I don’t wish to reduce up all of my favourite joggers and sweatpants that I personal and love.
- Huge Leg Pants: I might be in a forged/braces for lots of 2023 between the 2 surgical procedures, and might be reducing most pants to suit the forged as I don’t wish to reduce up all of my favourite sweatpants/yoga pants that I personal and love.
- Lounge Shorts: I get a lot of scorching flashes from being in braces on a regular basis and want some that may simply match over the forged that I do know are snug.
- Heated Blanket: Jared’s favourite electrical blanket died final 12 months, and it will get chilly within the hospital and our lounge, which I’m completely advantageous with, however he alternatively is just not. This could bless him tremendously.
- Button up pajamas: simpler for inpatient stays and shoulder dislocations (mine are tremendous worn out.)
Amazon
Most wanted gadgets:
- Moveable Mattress Pad: Jared wants to have the ability to sleep comfortably whereas I’m inpatient and as I get better downstairs for the primary 2 months so he received’t must sleep straight on our very unsupportive sofa. (His previous moveable mattress is so worn out and desperately must be changed.)
- Air Compression Boots: These will assist with POTS signs and stopping blood clots as I might be laying low for all usually.
- Reusable Ice Packs: Not solely are these the most effective, however within the hospital they’re so a lot better than prompt ice packs and leaky surgical ice luggage.
- Slimchicks adaptable underwear: useful when utilizing catheters and getting underwear on and off with the hip brace.
- SI Belt: my PT has suggested us to get this particular SI belt for the primary 2 weeks earlier than my hip brace and forged could be securely hooked up, if I decrease this somewhat bit it would hold my hips extra in line and collectively to present me some further hip stabilization.
What to anticipate from me throughout this time…
So far as social media goes, I’ll have associates updating my instagram with surgical procedure and inpatient restoration updates in my tales and presumably my feed. If you wish to know what’s going on it is possible for you to to search out it on Instagram @officialcassiemnolin.
So far as Grace + Objectives is anxious, I might be pausing the Accountability Collective till January 2023, I might be providing 1 on 1 Powersheets Prep Work Teaching beginning mid-December (solely 5 slots accessible), and if I’m recovered sufficient I’ll nonetheless nearly host the free quarterly G+G Neighborhood Name on December 27, 2023 at 6:30 pm EST for us to do our Powersheets 12 months in Evaluate collectively!
I plan to share most updates and content material over on Instagram on this upcoming quarter. Thanks for your entire help, grace, encouragement, and prayers as I’m going forward with this surgical procedure on November fifteenth.
Cassie Nolin is a married spoonie who lives the continual sickness life with EDS + Co. (Ehlers Danlos Syndrome and it’s comorbid circumstances.) She challenges others to decide on grace over guilt whereas aim setting, and is in ministry half time serving the net group by means of Grace + Objectives and The Spoonie Research. She loves planting, confetti, hand lettering, and sharing the hope she has present in Jesus. Her weblog, Dwelling the Continual Sickness Life, is within the high 100 continual sickness blogs and in 2019 she launched her podcast, Chronically Cultivating, the place Cassie encourages girls to stay genuine and intentional lives by means of their analysis’ not regardless of them. She is on a mission to assist different girls learn to commerce guilt for God’s grace and management for confetti! You may be taught extra about her at www.livingthechronicillnesslife.com
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