On this season, I’ve been delighted to dive deep into constructing the Grace + Targets Group. In doing so, the weblog has taken a backseat aside from sharing my objectives. In the present day, I need to share what’s forward and the way that may have an effect on my presence right here (right here which means the weblog, Grace + Targets, 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 eternally. I’ve been lucky to solely have had small surgical procedures and procedures right here and there. I’ve postpone hip reconstructions and different massive surgical procedures, as nearly all of EDS sufferers don’t need 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 issues that multiply with each added comorbidity they’ve, I’ve 4 identified 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 unimaginable EDS clinic for five years (and three days to be actual); they’ve saved me as steady and practical as potential. 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 conserving me going. All the pieces 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 very best degree of information about EDS, EDS subluxations/dislocations, and the comobidities related. So as to add the cherry on prime, they empower you (and your caregiver) to learn to cut back most joints and transfer your physique safely so, relying in your case, you aren’t depending on them. If EDS had a major care, Muldowney could be it! (Even should you don’t reside shut by, they provide a e-book that teaches you, and guides whoever your supplier is, the fundamentals about find out how to get began in caring in 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 feel it will 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 offer them a shoutout, I genuinely advocate them and hope their information and care is life altering for you too.)
I additionally don’t need to low cost all that the compassionate medical groups that take care of me have completed for me between specialised docs and their practices/clinics, my home-care nurses and suppliers, counselors, and brace workforce to assist me reside the most effective life I can with this physique. It’s not misplaced on me how beneficiant God has been in honoring how exhausting I’ve fought to seek out the precise practitioners so I may substitute the dangerous ones, all whereas cultivating a detailed knit help system between my household and the most effective 4 pals a lady may ask for – I really like you Maura, Lauren, Sam, and Bethany (by the way in which – you possibly can have 4 BEST pals – I’ll die on this hill!) This isn’t a humble brag, that is God’s goodness, and should you do not need the precise folks 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 properly to seek out these folks (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 can be enduring a two half surgical procedure beginning on November 15, 2022. I can be having an ankle reconstruction, and when they’re in there, they may also make a “sport time determination” about doing a reconstruction of my syndesmosis as properly. The second surgical procedure can 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 among the items of the restoration plan that was made for me, it might not be/look the identical for an additional affected person so please maintain this in thoughts.
For my case, my docs went forwards and backwards closely concerning the failure price 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 trustworthy assessments, my workforce has determined to do these two reconstructions earlier than going straight to a fusion; all whereas figuring out that sooner or later (hopefully not for at the least a number of years) I’ll very probably want these joints to be fused.
Any surgical procedure on an EDS affected person – particularly orthopedic – comes with a whole lot of danger and potential for issues, even when the surgeons do every thing “proper” and the affected person does every thing “proper” to get better. We all know that after you “open the door” of orthopedic surgical procedure, EDS sufferers can’t merely “shut it,” however I’ve peace of thoughts figuring out 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 a substitute 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, count on 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 neighborhood, church household, and this on-line neighborhood 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 handle himself so he can higher handle me.
Your thoughtfulness and generosity impressed us to create an inventory of 25 gadgets between a Goal registry and an Amazon registry that we’d like in preparation for this surgical procedure. (I additionally included protected snacks and blood sugar provides/ reward 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 checklist.)
Between the 2, I’ve given a score of 1-25 in order that the gadgets we’d like most may be simply seen. Crucial gadgets are marked “most wished” on Goal and “highest precedence” on Amazon. It’s actually exhausting 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 offer as your prayers and encouragement are treasured blessings on their very own! However I thanks for making a protected house for me to ask and share.
I’ll hyperlink each registries within the buttons beneath together with essentially the most wanted gadgets from every checklist, should you 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 enormously.
Goal
Most wanted gadgets:
- Joggers: I can be in a forged/braces for lots of 2023 between the 2 surgical procedures, and can be chopping most pants to suit the forged as I don’t need to minimize up all of my favourite joggers and sweatpants that I personal and love.
- Vast Leg Pants: I can be in a forged/braces for lots of 2023 between the 2 surgical procedures, and can be chopping most pants to suit the forged as I don’t need to minimize up all of my favourite sweatpants/yoga pants that I personal and love.
- Lounge Shorts: I get a number of sizzling flashes from being in braces on a regular basis and wish some that may simply match over the forged that I do know are comfy.
- 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 high quality with, however he then again just isn’t. This is able to bless him enormously.
- 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 immediately on our very unsupportive sofa. (His outdated transportable 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 can be laying low for all typically.
- Reusable Ice Packs: Not solely are these the most effective, however within the hospital they’re so a lot better than immediate 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 may be securely connected, if I decrease this just a little bit it’ll maintain my hips extra in line and collectively to offer me some further hip stabilization.
What to anticipate from me throughout this time…
So far as social media goes, I’ll have pals updating my instagram with surgical procedure and inpatient restoration updates in my tales and probably my feed. If you wish to know what’s going on it is possible for you to to seek out it on Instagram @officialcassiemnolin.
So far as Grace + Targets is worried, I can be pausing the Accountability Collective till January 2023, I can 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 just about host the free quarterly G+G Group Name on December 27, 2023 at 6:30 pm EST for us to do our Powersheets 12 months in Overview collectively!
I plan to share most updates and content material over on Instagram on this upcoming quarter. Thanks for all your 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 power sickness life with EDS + Co. (Ehlers Danlos Syndrome and it’s comorbid situations.) She challenges others to decide on grace over guilt whereas objective setting, and is in ministry half time serving the net neighborhood by Grace + Targets and The Spoonie Examine. She loves planting, confetti, hand lettering, and sharing the hope she has present in Jesus. Her weblog, Residing the Continual Sickness Life, is within the prime 100 power sickness blogs and in 2019 she launched her podcast, Chronically Cultivating, the place Cassie encourages ladies to reside genuine and intentional lives by their prognosis’ not despite them. She is on a mission to assist different ladies learn to commerce guilt for God’s grace and management for confetti! You’ll be able to be taught extra about her at www.livingthechronicillnesslife.com
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