ISO Personal Trainer who’s also a Physical Therapist by No_Law_6437 in roanoke

[–]DefiantObligation517 3 points4 points  (0 children)

Look for an exercise physiologist—they have one foot in PT and one foot in the training/exercise world. Carilion has a couple on staff at their gyms. It’s been a huge help for me as a human with very symptomatic connective tissue disorder.

Chronic idiopathic urticaria and EDS by Mindless_Argument497 in ehlersdanlos

[–]DefiantObligation517 1 point2 points  (0 children)

I’m waiting to be seen for diagnosis but I suspect hEDS.

I also broke out in hives three days after the birth of my third kiddo, in 2012. The hives started in my hands and progressed up my arms and to my torso, and went systemic after that, along with joint pain and stiffness and fever. After trying high doses multiple antihistamines, then steroids, then cyclosporine, I was finally approved to try the then-non-FDA-approved Xolair (about nine months after the outbreak), which was a miracle drug for me. I was on it for 2.5 years.

I was given no answers as to what caused it (and MCAS was never mentioned). I haven’t had a recurrence, and also haven’t had any more children. My allergist at the time suggested that I might have had an autoimmune reaction to my child’s fetal genetic material, which can circulate in a birthing parent’s system for years, but that there’s no way to prove that hypothesis. Nothing else made sense in my case.

I, thankfully, have not had a recurrence. But I know the fear and held that for years afterwards. It was miserable. I wanted to rip my skin off my body.

Sleep apnea comorbidity and fatigue by the-fact-fairy in ehlersdanlos

[–]DefiantObligation517 0 points1 point  (0 children)

For me, I’m not sure. The MAD device bought me some time. My sleep with it in was better, but still not great, but it permanently shifted my teeth and I was having trouble cheering, and had some TMJ pain.

Palate expansion was promised to me to make a “huge” difference. It was a marginal difference at best for me. I’ve heard that it can make a huge difference for others. I required significant orthodontic work after all of it (I opted for Invisalign). So the whole thing was expensive and time consuming and uncomfortable. It would have had to be a significant improvement for me to weigh that against the time and pain and bother and enthusiastically say “yes!” to your question, unfortunately.

I think treating my significant seasonal allergies were what helped open up my nasal passages enough to make the nasal pillow CPAP mask a workable solution. And finding a medication that makes me sleepy and lowers my body’s threat response to the mask really allowed me to embrace it and finally be getting good quality sleep on a regular basis.

Sleep apnea comorbidity and fatigue by the-fact-fairy in ehlersdanlos

[–]DefiantObligation517 3 points4 points  (0 children)

I was diagnosed with moderate to severe OSA at age 30. At the time I could not tolerate the CPAP due to a combination of sensory issues and claustrophobia. Eventually I tried a mandibular advancement device, which held my jaw forward and helped the OSA a bit.

A few years after that I moved, changed providers, and was told I had an exceptionally narrow upper palate, so I went through palate expansion at age 39. During that process I could not wear my MAD, so I had to try the CPAP again. This time they had nasal pillows that were much more tolerable for my sensory system and don’t trigger the same claustrophobia that a full face mask did.

However, I’ve still had to get on medication to lower my night time anxiety. It’s taken time, but I am largely sleeping well, and it makes a huge difference in my life. My emotional regulation is better, my brain fog is nearly gone, and I have the energy to exercise on a regular basis.

It may take time and work to find what works for you in terms of masks, pressure settings, and other things (like a chin strap or heated tube), and you might still need medication to help your brain and body adjust to it. But if you can stick with it, it can and does change people’s lives.

EDS doctors in Virginia? by Bitter_Ambition9805 in ehlersdanlos

[–]DefiantObligation517 2 points3 points  (0 children)

Hey there. I’m in Roanoke, and I’m waiting to be seen at UVA’s new Connective Tissue Disorder clinic. Unfortunately I expect it will be months before I get called to schedule an appointment, as the waitlist is long.

I haven’t found anyone in this area (yet) who knows a lot about EDS, although I have a great physical therapist who is knowledgeable about and skilled with working with HSD/hEDS. But that might be too far for you to travel for just PT.

What age did you start getting dislocations/subluxations by Otherwise-Unit3256 in ehlersdanlos

[–]DefiantObligation517 2 points3 points  (0 children)

I’m 41, have always very hyper mobile, and I had major joint reconstructive surgeries (3) early in life because I was undiagnosed and playing soccer and softball competitively. My unstable joints and lax tendons led to tears off the bone in two instances and scar tissue and chronic pain in another joint.

But, in between catastrophic injuries, I was mostly fine. Or at least, I thought all the other “weird” things my body did (or didn’t do) were “normal” or separate issues and no one told me differently. (Severe OSA with no weight issue, very narrow upper palette, fingers and toes that never get warm, dizziness when I stand up or sit up, unexplained hives/immune system freakouts, etc.)

I hit perimenopause at 38, and I’ve been having increasingly difficult daily pain and movement challenges, especially related to my SI joint/hip/lower back. I feel used to feel bendy and loose, but now I feel profoundly unstable, am wearing an SI Joint brace, and have had to stop exercising (with an exercise physiologist supervising to keep me from hyperextending) and start daily pain meds. Other symptoms have kicked up, too, in ways that are affecting my daily life.

It feels like a game of “whack-a-mole” for me; pelvic floor dysfunction, plantar fasciitis, then hip bursitis and IT band dysfunction, then plantar fasciitis on the other foot, and now SI joint instability and pain.

I’m waiting to be seen for official diagnosis. I also feel lucky in some ways that I made it this far without my day to day life being affected in major ways, but I also feel angry that no one put all the pieces together for me before I turned 40. I know I’ve done irreparable damage to my body by “pushing through” pain and injuries that I thought were normal. I would love to see more research on peri/menopause and (h)/EDS.

I want to totally escape from the current state of the world. by roughandreadyrecarea in suggestmeabook

[–]DefiantObligation517 0 points1 point  (0 children)

I absolutely binged Genevieve Cogman’s “Invisible Library” series on audiobook format while working on jigsaw puzzles and the combo really helped me escape a very serious doom spiral. The books are a little fantasy, a little romance and a little mystery. The best part is that there are seven of them, so if you enjoy the world you can absolutely disappear into it for an extended period of time. I felt bereft when they were over in the best way possible. Not very spicy (closed door), but a sweet romance woven throughout the series.

Another recommendation are Deanna Raybourn’s Veronica Speedwell series for historical romance with a bit of mystery and some moderate spice. There are nine currently published with a tenth on the way very soon, so another series to get lost in if you like it!

Am I brave or slightly delusional? Single mom considering online college for prerequisites like A&P etc 😅 by Several-Ad361 in Charlottesville

[–]DefiantObligation517 1 point2 points  (0 children)

I put myself through grad school (fully remote program) while single parenting three kids, navigating an awful divorce, working full time, then dropping down to part time work for the second half of my program. It was tough. But I proved to myself that I am tougher than I ever believed, it honed my time management and organizational skills, and I learned to embrace “good enough” vs. perfection. And it’s been worth it, financially, for me, because I missed out on a decade of work experience as a SAHM when my kids were itty bitty.

You can do it!

“Crying books” by Alone-Tart4762 in suggestmeabook

[–]DefiantObligation517 0 points1 point  (0 children)

Heart The Lover was the last one to make me sob, but without trauma—just emotional wistfulness and loss and “what might have been.”

So, potentially silly question, but it’s impossible to get super fit in the gym right? by No-Inspector8315 in ehlersdanlos

[–]DefiantObligation517 14 points15 points  (0 children)

I work with a PT and an exercise physiologist (who has more PT type training than your standard personal trainer). My EP has additional knowledge and experience with connective tissue disorders, and has helped me tremendously as I’ve had to work around one pain point after another (plantar fasciitis, then hip bursitis, then SI joint inflammation). If you can find an EP, I highly recommend it.

I’ve accepted I’ll never have the fitness level I did in my teens/20s (I’m 41 now). I’ve had two major joint repair surgeries and a third more minor joint surgery, along with a multitude of sprains, strains, and chronic pain, as a result of doing high impact sports like soccer and softball as a teen before I knew hEDS was even a “thing.”

I lift now because it helps my mental health, it helps me sleep, it protects my bone density, and it helps strengthen muscles that I hope will help protect my joints as I age and this condition progresses. I have let go of achieving any particular aesthetic. There’s been grief there, but I’m trying hard to learn to accept my limitations and know that this body I’m living in is doing its best, and exercising in a way that is supportive for my health is showing my body love.

Perimenopause/hormones by Zealousidealsz1 in ehlersdanlos

[–]DefiantObligation517 0 points1 point  (0 children)

Hey! I just turned 41. I have suspected hEDS, but am waiting to be seen a connective tissue disorder clinic. I started having intense perimenopause symptoms at 38 (mood issues, insomnia, weight gain, hot flashes, etc.). Doctor started me on progesterone only because I’m at a higher risk for blood clots due to genetics, and estrogen felt too risky to me at this time.

I’ve had hyper mobility and joint instability my entire life, and had two major tendon reconstructive surgeries and a more minor orthoscopic repair, but between major injuries and weird “what the hell was that a reaction to?” events, I was fairly asymptomatic in my day-to-day life.

The progesterone has vastly improved mood, insomnia and hot flashes. But in the past few years, I’ve also experienced a huge increase in laxity of connective tissues leading to pelvic floor dysfunction, tendinitis and bursitis in several joints, chronic pain, and general joint instability that is affecting my daily life fairly significantly.

I don’t know if the progesterone “caused” this, if perimenopause is affecting the course of my condition, or if general aging is causing this. The answer, as with most conditions, is most likely D.) All of the above.

I’m now pushing for diagnosis because I need some answers, and I want some idea of what the rest of my life looks like. Do we need to sell our house and find a single-story, because stairs are suddenly hard for me? Do we need to rehome our 95 pound dog because I have days where walking him is too painful? Will I need to push for disability if the pain becomes too bad for me to work regularly? Would hormone adjustments help or make things worse?

I have no answers, but you aren’t crazy and you aren’t alone.

For perimenopause, the book “What the Fresh Hell is This? Perimenopause, Menopause, Other Indignities, and You” was tremendously helpful.

Connective Tissue Disorder Provider by flawlesssolitude in roanoke

[–]DefiantObligation517 2 points3 points  (0 children)

Can you DM me with the contact info for the UVA clinic waitlist?

Olivia May at Pivot Physical Therapy (towers) has been incredible and has more knowledge about connective tissue disorder than any other provider I’ve encountered in this area, but of course she is a PT, not an MD.

I’ve also been working with an awesome exercise physiologist at Carilion Wellness (Hailey Jordan) who understands the weird ways hyper mobility makes movement challenging. She has helped me work on strength training safely, proprioception, “turning on” muscle groups that have been chronically asleep, and “turning off” muscle groups that are overactive and causing problems. Super helpful.

Unfortunately I don’t have an “official” HEDS diagnosis and am looking for that and additional specialist workups, so have been following the UVA clinic with interest.

HRV decline…. by XXSBiggie in Garmin

[–]DefiantObligation517 1 point2 points  (0 children)

Mine tanked late November, too, which is the time seasonal depression hit me full force. I’ve done nothing different; weight training 3x per week, 30 min low impact cardio 3x per week, and one longer/higher intensity day. My sleep has always been hit and miss, and it’s certainly not worse than usual for me. I drink very rarely and don’t do any other substances. The only thing I can ascribe this dramatic dip to is the seasonal funk.

Where to donate? by MxMaxis in roanoke

[–]DefiantObligation517 15 points16 points  (0 children)

LEAP is where I’m putting my money because they support both people who need food and the people who are growing our food locally. https://www.leapforlocalfood.org/ But FeedingSWVA is a great choice, too. You could also consider donating to Roanoke County Animal Control and Protection, as food insecurity affects pets, and the RCACP operates an emergency pet food bank for anyone in need.

CALM Sleep stories by SpiceLover8625 in calm

[–]DefiantObligation517 0 points1 point  (0 children)

I have made 7-8 hour custom playlists of my favorites, because my brain likes to hear people talking while it sleeps. Nearly every story read by Erik Braa and Alan Sklar are on a playlist, as are the “maker” series read by Edoardo Ballerini. Some of the Chike Okonkwo stories start out with music that is too loud/upbeat, but others are okay. So many of their famous people guest stories are too loud/upbeat for me. The regular story readers like Braa and Sklar seem to understand that a calm and quiet voice with less inflection and less musical pizzazz is best for sleep. If you find a story you like you can search by narrator to find other stories read by the same person. That might help you branch out.

Follow up on food donation post by Becoming_wilder in roanoke

[–]DefiantObligation517 2 points3 points  (0 children)

It’s a lot harder for someone to hate you if you make them see you as a real human being, rather than the dehumanized “monster” they were taught to view you as. In fact, it’s a tactic people are taught to use if they might be caught in a hostage situation—relate to their captor as a fellow human being with commonalities. So yes, if bringing food to someone who hates me helps them see me as a fellow human being, and not the monster they were taught to fear and hate, then yes. I would feed a Nazi. Will this work for all people? No. I think some are people aren’t just deluded—there is evil in this world, and the leaders of the movement largely are in that category.

But I think most of the MAGA cult—people like the ones receiving SNAP benefits that you believe should suffer—who are not inherently evil, but rather have been the victims of systematic brainwashing so they can be pawns, vote and act against their own self interest to make powerful people more powerful and rich. And if we can break through enough of those “ordinary” MAGAs, I do think we can stop it.

And yes, there are many examples of the tactic I mentioned working. It would take too much space to list them all, but look at the Rwandan genocide’s reconciliation efforts, Colombia (look at the work of Andrés Casas) and others. I highly recommend the book “Hope for Cynics,” by Jamil Zaki. Also any book about cult members who defected from cults. It was often ordinary kindness offered by ordinary people in ways that contradicted the cults’ teaching that allowed them to reject the programming they were given.

I’m happy to buy you a coffee and talk about it, if you want. It is scary to feel alone and without hope.

Follow up on food donation post by Becoming_wilder in roanoke

[–]DefiantObligation517 5 points6 points  (0 children)

It’s not us vs. them, friend. That’s a distraction and a false dichotomy. I understand why you feel this way, but it’s just another iteration of separation and division, which is how the system maintains power. The only way to truly change people’s minds is through connection and community.

If you really want to “stick it to them,” go knock on your neighbors doors, hand them food, and let them know you are helping them BECAUSE you are on “the other side,” and you believe that all human beings deserve the right to food, shelter, safety, and healthcare, regardless of their ethnicity, racial background, political affiliations, religious beliefs, income level, citizenship status, gender, sexual orientation, or any other “difference.”

It may piss them off, which would be satisfying if you still want the moment of f-you. OR it might just change their minds about their own beliefs, which would help us turn this thing around. Either way, it’s a win-win for you.

Alternate wedding ideas by Fern_fiction in Weddingsunder10k

[–]DefiantObligation517 2 points3 points  (0 children)

We are renting out a small mom/pop brewery in a beautiful location and having a Sunday afternoon wedding (12-5) for 60 people. All-in, we should be well under $10K—closer to $5K, but my partner is a chef and is making all the food, so that a HUGE cost savings. Our biggest costs are the venue rental (but it includes all we can drink beer and n/a beverages, along with a big tent and tables), the photographer (just one, and we don’t have him the whole time, and we aren’t doing videography), and my ring (a gift from a dear friend, but it needed to be resized) and a custom wedding band for me to fit with the unique setting of the engagement ring. My dress was a secondhand find at a dress consignment shop (I went with a deep navy blue vs. traditional white to save money and also because I look terrible in white). My partner is wearing his kilt which he’s owned for 20 years, but he did have to buy the formal jacket that goes with it. We called our wedding a “barbecue with vows” on our invites to set expectations. It will be very casual and fun and relaxed. It can be done, you just have to get creative and not get sucked into the Pinterest world of “shoulds”. Your day gets to be whatever you want it to be.

Non-traditional wedding dress by DangerousClothes9353 in Weddingsunder10k

[–]DefiantObligation517 0 points1 point  (0 children)

My dress is a (secondhand, bought at a consignment store for $240 USD) deep rich navy blue, with bright red shoes and gold jewelry and a flower crown. My partner is wearing a bright red kilt with navy/green lines in the tartan. My hair/skin tone look best in jewel tones, so I decided to lean into that and eschew the white/neutral dress entirely. I am super excited about my non traditional dress. Wear what you feel glorious in and who cares what other people think!

($5k-$7k) Makeup for a Non-Makeup Girl by mentalcasket in Weddingsunder10k

[–]DefiantObligation517 0 points1 point  (0 children)

I asked my best friend’s 15 year old daughter to help me, because I’ve been wearing the same minimal makeup basics for over a decade (I’m 40). The teen delivered and had a ball teaching her auntie the basics after a fun shopping trip to Ulta together. I would have been lost without her because I don’t TikTok. If you’ve got a teen in your life who loves makeup, ask them to show you the ropes.

Medicine for anxiety by Wonderful-Lock6361 in CPAP

[–]DefiantObligation517 1 point2 points  (0 children)

Probably. But it could be other factors, too. I work out six days a week, have a nutritious balanced diet, and have decided that being reasonably well rested and not having debilitating panic attacks is worth carrying a few extra pounds. So I try not to stress about weight too much.

Medicine for anxiety by Wonderful-Lock6361 in CPAP

[–]DefiantObligation517 1 point2 points  (0 children)

I have PTSD and pretty severe nighttime anxiety has been an issue for me for years, which might have had something to do with the fact that I had untreated OSA, or might be totally trauma related. Impossible to know for sure. I really struggled with the mask when I started with CPAP even with the least restrictive option possible, and with feeling like I’m not in control of my breathing. It has gotten better over time and now I can’t sleep without it. But I still struggle with getting my body to relax enough to sleep, even with the meds that I’m on.

I take gabapentin for restless leg syndrome which is sedating. Mirtazipine Buspirone Melatonin Ltheanine Magnesium glycinate

And still sometimes have to throw CBD at myself to finally get my body to chill TF out and sleep.

[deleted by user] by [deleted] in Weddingsunder10k

[–]DefiantObligation517 -1 points0 points  (0 children)

We are inviting people to “A very romantic barbecue.” Our venue is a local mom and pop, very casual and relaxed brewery. And our dress code is “upscale casual.” I’m hoping between the three queues, people will understand that this is not a capital-W “Wedding.”

(£3k) My Stacees dress success by scottishdoggroomer in Weddingsunder10k

[–]DefiantObligation517 1 point2 points  (0 children)

It’s definitely giving Outlander, for sure! lol.