Pretty Braced Girl

Lucy, 34, she/her 💜 // Chronic migraines & craniocervical instability #CCI + TMJ disorder + hEDS // Braces+Casts+Tubes // PrettySickDays // Just a chronically ill girlie with a side of MedFet & a little kink too ♿️

[prettybracedgirlxo]

I’ve been struggling with really bad CCI and migraine symptoms today. Trying to get some relief with oxygen and using my minerva brace for better head & neck support/immobilization, even while just laid up in bed. I can’t explain how exhausting it is to constantly fight with my body and figure out what might alleviate the symptoms or what triggered them this time. It feels like every other week I’m having a flare of some kind, and all I want is a few good weeks… to feel incrementally better and not like my body is going to suffer forever.

My last neuro appointment was OK, but not great. The good news was my CCI hasn’t worsened, but it hasn’t really improved either. So since I’m “managing” the suggestion was to continue treatment as is, and have a consult every three months or so to monitor any changes. It’s been hard to process that this is just what I have to live with right now. I have to wake up every day and simply “manage” my conditions and hope it’s a good day and that I’ll be able to get out of bed and work or do things like gardening and running errands.

It’s days like today when I actually feel disabled. The pain is debilitating and the reality of having chronic illnesses is heavy. It’s a dark reminder of what living with CCI & hEDS & long covid is truly like when the symptoms are not managed, and how they could deteriorate me in the future, making it clearer that it’s not a question of ’if’ but when I’ll need more care and mobility aids to manage my health. For now it’s unnecessary, but when the time comes… the new lavender power chair from paiseec will be suuuuper cute 💜💜💜

[prettybracedgirlxo]

Day & night on an average Tuesday… the realities of living with chronic illnesses and the medical necessities I now require just to work and sleep comfortably. It’s hard to believe that this time last year, I didn’t have any diagnosis’, need to wear braces or diapers daily, or have a CPAP and supplemental oxygen. And while I’m grateful to have my CCI and long covid diagnosis, and being evaluated for hEDS, it doesn’t make living with these conditions any easier…

Later this week I have a neuro appointment for another CCI follow up, and an appointment with a urologist for bladder evaluation and possibly another catheter for awhile. My GP thinks my bladder retention hasn’t been caused from meds, but rather is a hEDS symptom, so it can’t be fixed with medication adjustments and so far using a Foley catheter has been the only thing that’s helped. Hopefully the urology appointment will get me some answers and relief.

[prettybracedgirlxo]

CPAP, CTO, compression… plus oxygen & inhaler // just my regular everyday things now.

[prettybracedgirlxo]

Life lately… // still having bladder retention issues and needing a catheter intermittently, adjusting to using a CPAP and wearing the mask every night, and having inflammation and asthma symptoms. Mostly I’ve been struggling with mental health and trying to reconcile that this is just my life now… constantly trying to manage my symptoms and find small moments of happiness and relief when I have an OK day. Those have been minimal the last few weeks… I just want to feel better and get back to a better quality of life.

[prettybracedgirlxo]

Today’s work from home vibe 🩷

[prettybracedgirlxo]

Weekend time // I spent most of this past weekend in bed or on my couch, using oxygen and wearing braces to alleviate symptoms of my CCI, hEDS, and long covid. While I’m grateful to finally have my diagnosis’ it’s still very difficult to comprehend that this is my life now, and there won’t be another day that I won’t think about being chronically ill. My body is different now, and I will always have a symptom to manage. It’s not an easy reality to face, but I’m glad I have a place to share and find support 🩷

[prettybracedgirlxo]

Last night’s look + today’s result. Officially starting my CPAP journey with a resmed machine and full face mask. Hoping this can bring me some relief and symptom improvement, because what’s one more medical device to use at this point? 😅

[prettybracedgirlxo]

Always battling symptoms these days… trying to muster through with my Aspen therapy collar, oxygen, hearing aids, and TMJ support. Just another night as a chronically ill girlie 🫶🏼

[prettybracedgirlxo]

LATELY // the last six weeks have been rough as I was dealing with a lot of bladder issues due to medications causing on and off retention. I spent two separate weeks with a Foley catheter while switching meds and trying to get it under control. Thankfully the bladder retention has resolved, but I’ve been dealing with more TMJ pain, headaches, and CCI symptoms.

I think a lot of it is because weather changes, but I’ve also gone on a few work trips and the travel has been hard. I’ve been relying a lot more on pain meds so I’m happy my travel is done for a month or so, which means I’ll have more time at home and can let myself rest more and have a better treatment routine. Also looking forward to getting some test results back from my sleep study and an upright MRI to see what further prognosis will be.

I’ve also been reflecting on how much has changed in my life since my CCI diagnosis in August, and what I’ve had to come to terms with. I’ve had to majorly reconcile the part of me that used to fantasize (& fetishize) needing medical care like this. Since it’s no longer pretend I’ve come to appreciate it all in a different light. I’m very thankful that I’ve found a community to share in, and that there are so many resources for people who face chronic conditions & illnesses. Having that has made accepting this new part of my life easier, but a bigger perspective has been realizing that it’s been an easier transition (in some ways) because I was already used to seeing myself as disabled. That’s something I’ve been addressing in my last few therapy sessions, especially as I’m probably facing more diagnosis’s as I have more tests and continue treatment.

For now I’m just going to take things day by day and be super grateful when my symptoms are in check and I feel relatively OK. And I’ll definitely keep documenting and sharing as I continue to navigate living with chronic illness and whatever comes next 🫶🏼

[prettybracedgirlxo]

More Q&A stuff 🧡🧡

[prettybracedgirlxo]

Doing a little Q&A on my insta about my conditions and treatment… had some good questions so far 😉

[prettybracedgirlxo]

Weekend treatment 🧡🧡🧡

[prettybracedgirlxo]

Taking this weekend to do some intensive treatment since I was traveling last weekend and will be gone again next week. I’ll be so glad when Q1 wraps up and I can settle into a better routine at home! Definitely grateful to be my own boss and do a lot of work from home, but Q1 has tradeshows I can’t miss, and it’s been rough trying to balance my work and keeping myself well. Happy to be able to take a few days and give my body the treatment & rest it needs 🧡

[prettybracedgirlxo]

It’s been a whirlwind the last few weeks and I’m thankful to have a couple days to really rest. My chronic conditions have had ups and downs, but by staying consistent with my daily treatments I’ve seen some symptom improvement and pain relief. The worst thing lately has been my TMJ issues, so I have a referral to a get a nightguard/splint to correctly position my jaw while wearing my neck braces & CTO, and then have my jaw/teeth examined for further treatment.

My sleep study was rescheduled to March and I’m waiting for final evaluation from my last neurology appointment so for the moment I’m simply staying the course of my current treatment plan. It’s just been a huge adjustment the past six months to reconcile with my CCI diagnosis and know it’s something I’ll always need to manage. And it’s definitely been wild to get used to wearing my braces out of necessity, especially while traveling. But after wearing my neck brace on my last couple flights, I realized how much it helps and why I really need it. Slowly I’m settling into this new routine and giving myself grace as I navigate being chronically ill.

[prettybracedgirlxo]

Today’s CTO, O2 & eTNS therapy time. Finally settling into a daily routine for my medical needs to hopefully provide relief from pain and symptoms. I have another appointment with my neurologist in a few weeks and I’m hoping to talk to him about trying a vagus nerve stimulator. Been feeling better the last week or so and I think it’s because I’m being consistent and intensional with following the prescribed treatments. Fingers crossed things keep improving!

[prettybracedgirlxo]

I was finally prescribed an eTNS (external trigeminal nerve stimulator) device to help with my migraines. It’s meant for daily use as a preventative, but can also be used during migraine attacks to help alleviate them. I’m using it on the second lowest setting since I’m just starting to use it and it has a pleasant tingling sensation. Will definitely be interesting to see what the higher levels are like! Fingers crossed this helps 🙌🏼

[prettybracedgirlxo]

CTO and oxygen therapy for a couple hours in bed today. It’s definitely nice to have a slow, lazy Sunday before my work ramps back up this month. I’m hoping I can find a good balance between working, my doctor appointments, my home treatment needs, and trying to still have a life in spite of all of it. It’s been an awful lot to manage so far, but I’m hopeful I can implement some systems and schedule that will help. Trying to live by the old saying, it gets worse before it gets better. Not quite sure I’m past the worst part, especially since I still have tests and evaluations for other disorders & illnesses.

It’s been wild reading and studying more about CCI, HEDS/HSD, and their other co-morbidities. My migraines were really the tip of the iceberg on all this, and it’s sort of scary knowing that I’ve lived for so long without proper treatment for so much of this. But also, it wasn’t as bad before. Things seemed to come to a head after I had Covid in April (my second time) and my migraines and other symptoms got noticeably worse and my recovery time seemed to drag on. Now I know I probably had “long covid” and it caused havoc on my system. I’m still dealing with the fallout from it and slowly working through which issues are related to that, or have other causes.

Thankfully after having some days to relax and rest, I’m feeling better mentally about all of this. It’s hard to face being chronically ill and living with challenging conditions, but I know things will get better and I just have to make the best of it.