Mona Advocaat

@monaadvocaat
All my life people asked, what is wrong with you? Accident prone, double jointed, lax-ligaments, always fatigued, always sick with something or another. Which left a lot of scars inside... recently I was diagnosed with Ehlers Danlos Syndrome (EDS) which solved the mystery. So I am on pain killers 24/7, use braces on my knee, hips, lower back, fingers and wrist. 1 shoulder has been reconstructed. I was a figure skater, the doctor put me in skating to solve my pigeon toed walking and I fell in love with the sport, until I had a severe accident and have never really healed. I skated until my knees could not push anymore (a little stubborn too). There is a lot more to this story but in short I suffered from: frequent bladder infections, IBS, dislocations & subluxations, severe major depression, general anxiety disorder, hypoglycaemia, hypothyroidism, migraines, and exhaustion. I use a wheelchair or cane to get around.
Community Voices

Sad and depressed

I have been suffering from sadness and grief at everything I can't do now. # I wanted to see if a dog would help me with my physical and mental condition # But my husband said no to the dog 😢 What do I do?

10 people are talking about this
Community Voices

Sad and depressed

I have been suffering from sadness and grief at everything I can't do now. # I wanted to see if a dog would help me with my physical and mental condition # But my husband said no to the dog 😢 What do I do?

10 people are talking about this
Community Voices

favorite brace/splint brands or companies? #EhlersDanlosSyndrome #ChronicPain

i recently started working with a physical
therapist who has a lot of experience with
treating hEDS and other connective tissue
disorders. she said that though she is
typically not a big fan of braces/splints, my joint instability is currently at a point where she wants me to get a few stability aids, at least until we’ve built up enough slow-twitch muscle strength to support my joints better. she recommended i get wrist braces with an additional thumb brace attached (do those have a name? they're the ones that are basically a two-in-one brace for both your wrist and thumb), and potentially ankle braces and a brace for my
right knee. i’m also hoping to talk to her about silver ring splints, because my fingers are officially in major need of some help, lol.
anyway, she didn't have a specific recommendation for a brand or brands for braces/splints, and there are sooo many out there (though i'm not talking about eds specific ones- i haven't really found any of those, except for a few companies that make silver ring splints specific to eds patients). does anyone have a brand or company that makes braces or splints that they really like or have had a lot of success with? i really appreciate any advice/suggestions you might have!!

11 people are talking about this
Community Voices

sleep issues

does anyone have any tips and tricks on sleeping comfortably with sore joints? my hips pop out if i lay on my back, and are achy if i lay on my side

7 people are talking about this
Community Voices

Ms. Bobblehead

My CCI has been freaking me out lately. My neck has been cracking a lot lately. I can feel my cervical vertebrae sliding in and out of place. If I massage the back of my neck I get a raging headache. I looked up to look at the stars the other night and got very dizzy and gave myself a headache. Last night, I tilted my head up to kiss my husband and had the same thing happen.

I wear my Aspen collar twice a day and when I'm a passenger. I wear my soft collar when I drive.

Is PT worth the time, expense and effort? My insurance is awesome so that isn't an issue at least.

I can't tell if I should be genuinely concerned or if I'm just panicking.

I really hope all of this makes sense. Thanks for reading. #HEDS #CCI

6 people are talking about this
Community Voices

I never feel safe in my body #hypermobile #HEDS #EhlersDanlosSyndrome

I had a knee dislocation today while I was literally just sitting on the couch. It was so jarring and random. I’ve dislocated my knees plenty of times but it’s still terrifying every time. Now tonight I’m feeling very anxious and kinda traumatized tbh.

I just want my body to be able to feel relaxed for once. I hate the constant muscle guarding and never being able to get comfortable. I hate having this very real fear that something can come out of place at any second.

Does anyone relate to not feeling safe in your body because of the instability?

Idk what I’m looking for here w/ this post but I’m just feeling kind of alone with all of these feelings right now. It just sucks.

10 people are talking about this
Community Voices

Hydration

#hypermobileehlers-DanlosSyndrome(hEDS)

<p>Hydration</p><p>#hypermobileehlers-DanlosSyndrome(hEDS)</p>
18 people are talking about this
Betsy Hnath

Dealing With the Physical Aftermath of Breast Cancer Treatment

No one is in the bathroom with me, but I’m facing my enemy. I pull the scale from its hiding spot between the toilet and the end of the vanity. It’s the perfect place since I’d honestly prefer crapping on it to stepping on it. I cringe. Is this going to be a good day or a bad day? I’d better go pee first. I drop my clothes, squeeze every ounce from my bladder, and then use my toe to tap the “on” button. A rectangular zero blinks in the liquid crystal display. It isn’t ready to break my heart yet; it needs to warm up first. The numbers look just like the ones on my alarm clock, yet these are sinister. The clock tells me what I know: I haven’t gotten enough sleep; it’s time to shuffle the kids to school; I’m late. The scale tells me what I dread: I have zero will power, zero control over my life. And the weight I lost before I discovered my cancer and kept off during my treatment wasn’t the result of eating well and exercising, it was because my body was devouring calories to fuel the disease overtaking my breast. The scale stops flashing — my cue to climb aboard. I hold my breath, think thin thoughts, and wait. I watch it blink, blink, blink… 147. Shit. I close my eyes, exhale and step off. Every day starts the same: I will feel better; I will eat better; I will work out longer. And every day ends the same: I’m still so tired; I don’t feel like eating anything green; it was too hot to run. The rational side of my brain perks up. You have cancer, so what if you weigh 15 pounds more than you did? But the chemo was six months ago and the radiation two. What if the weight has nothing to do with cancer or the stupid drugs I still take? What if I’m just weak? Seven months ago I was in the best shape of my life, training for triathlons, the picture of health. Then I felt the lump. The scans and biopsies showed my doctors five small, aggressive tumors in my left breast, so my oncologist decided to pluck a few key lymph nodes from under my arm and test them for cancer, too. A lot hinged on that procedure, because if she found any, my treatment would be longer, harder, and involve radiation. “We’ll take the sentinel node out and test it while you’re still on the table. If that one is positive, we will take the ones around it.” the doctor said. “If you wake up with a drain, you’ll know we found cancer.” After navigating the haze of pain medications and anesthesia, I saw the tube sticking out from my armpit. “Fuuuuuck,” I slurred to the doctor. “How many?” “We took eight more.” Though my road would be longer, I was lucky. The rest of the nodes were clean. I made it through four-and-a-half months of intense chemotherapy, spending most of the time hiding in my house when I wasn’t helping others feel better about my situation. I joked, hugged, and smiled my way through the pickup line at the kids’ school, soccer practices, and holiday parties. While I kept up the public show, often I went home exhausted and in tears. “It’s a marathon, not a sprint,” my husband George commiserated. “I know,” I said, “but they keep adding miles!” I felt guilty whining. Two years before, his melanoma surged back after a six-year hiatus with such vengeance that doctors assumed he would die within weeks. I slept next to him in the ICU night after night, watching the treatment whither my oak of a man. And then I watched him come back to life. When I was diagnosed, George reassured me I was strong, too. And when I looked in the eyes of the man who had been my partner for more than 20 years, I believed him. Because I had the BRCA2 gene mutation my boobs had to go. Doctors cut across each pectoral muscle and scraped out every ounce of breast tissue, then shoved in thick plastic expanders halfway inflated with saline. Once a week my plastic surgeon dangled a magnet over each breast, waiting to see where it stuck to my skin. When he had his target, he buried the needle to inflate some more. My chest ached for days after each round, leaving me grumpy and distracted. The surgeon stretched in six weeks what had taken puberty two years; my breasts were back to their 16-year-old size and perkiness. When the doctors were satisfied with my inflation, it was on to radiation. “You’ll probably feel some discomfort,” the doctor said. Discomfort my ass. I felt pain and burning. By the end of two weeks my skin changed from light pink to a shade of crimson usually reserved for roses and nail polish. After six, it was crispy and blistered. I put the “raw” in bra. Now, as I look in my bathroom mirror, even the skin made so angry from radiation is only a shade or two darker than the right. And yet there is not one part of my reflection that looks attractive to me. I wonder if I will ever turn the corner and begin to accept what I see. Mastectomy scars bisect both breasts and there is a missing item of distinction from each: A nipple. I know I should be thankful for this day, this life, this body. But right now all I see are the reminders of how much I have lost. Tears well and slowly fall down my cheeks.   A smile creeps across my face and I begin to giggle as the irony hits me: Here I am, hating my body, when I have tits just like Barbie. I wipe my eyes with the back of my hand, take a deep breath and start the shower. Hot water pours over my face, washing away my tears, and I begin to feel better. I will dry off, refreshed, and start again. This post was originally published on HuffPost. We want to hear your story. Become a Mighty contributor here.

Community Voices

Medication blues.

Have been put on three different meds to keep anxiety/depression in a manageable place, and I feel like they’re causing more harm. I used to have panic attacks whenever I had to leave the house, and now I just feel too light-headed to go anywhere (I don’t feel safe driving like this).

I used to struggle to talk to people because I felt pressured, now I just can’t find the right words and get frustrated when trying to speak to people (brain fog, I guess?).

I used to be able to predict my symptoms to a point, and be able to work with them occasionally, now they feel unpredictable and even less manageable.

Is this normal? I’ve only been on meds for a month and a half or so.

#PTSD #PanicDisorder #Anxiety #Depression

55 people are talking about this
Community Voices

Thumb joints

I recently dislocated my thumb joint just above my wrist. I thought I broke my wrist! So painful! They say that I have sprained my wrist. Most of my joint pops or dislocations do not hurt that much anymore but wow. Now it is subluxing all the time. Anyone else have this and how do you stabilize it?
#thumb

7 people are talking about this