Help, in Theory.

Getting help is an extremely hard first step. The typical saying goes: you can't truly get help until you want it. I wasn’t sure I wanted it to bring up so much pain to the surface beyond what I was already feeling. However, I did know it was what I NEEDED. After freaking out a few friends and myself, I had to get professional help. There was no way to handle the idea of an upcoming hip surgery, much less actually mentally handle the surgery and recovery time in itself. I reached out to the only option I had with my horrible insurance: the free county mental health clinic.

This clinic typically works with unhoused people, people in halfway homes, or those just out of inpatient care. I hoped I would at least be able to get a little luck as to who could help me based on the fact that the clinic normally sees much more extreme cases than mine, with much more complex mental illness and additional addiction issues too. I was able to call and make an appointment for the beginning of the intake process that was scheduled for only a few days out. I was told to show up a full 30 minutes early for paperwork that I was warned would be quite long.

When I got there, I was handed a FULL stack of papers to fill out. I swear it was 30–40 pages long… By the time of my appointment, I still was not done with it all and was called back anyway. I was then met by an intake coordinator who walked me back to her office. I had my cane, and I had heavily wrapped my messed-up foot that day, but I was NOT prepared for the amount of walking I had to do through a maze of hallways all the way back to this lady’s office. She was a fast walker too, and I was struggling to even kind of keep up…

Once in her office, she took my forms and opened a program on her computer to start filling it out. Instead of reading anything I had spent the last 30 minutes detailing on my intake forms, she asked me each question and had me speak my answer while she struggled to keep up with notes regarding my answers… These questions were deep psychological-history-detail-focused as well, going back through my entire life. After each painful question that reopened major trauma, she would turn it around and tell me a PERSONAL story about how she feels or how she related either to my answer or her own life experience on the matter. Many, many times, basically telling me she beat anxiety and depression so I could too.

Near the end of the questions, we finally got to the part I hadn’t finished on the paperwork yet, and it was all the heaviest of topics: assault/abuse, violence, suicide attempts, etc... I swear she said suicide a dozen times over those last 15 minutes. Then she followed up the section by stating, “Did you know that even saying the word ‘suicide’ makes people instantly start thinking about suicide?” YEAH NO SHIT SHERLOCK… THIS IS WHY I AM HERE PLEASE STOP. She then proceeded to tell me that this was also only her second week on the job…

By the end, it is safe to say I was beyond rattled and felt in complete numb shock. I was then told my next step was to pick my services. They force you to get help from them in a minimum of three different forms. Since I wasn’t there for drugs or addiction, I really only had the option of being assigned a case manager, a therapist, and a psychiatrist. I was told to walk across this large court to one of the clinic’s other buildings to get a quick intake with the medical side of things and to set up a request for a therapist. I was told they have walk-in appointments for day-one intake so that I might even be seen right away!

Once I finally waddled up to the front again, I got a look at how far away the next building was and almost turned around right then. However, I was desperate. I had just gone through an hour and a half of painful interrogation combined with self-help-cult-leader-style motivational speech. My brain was completely warped, and the idea I might get to talk through it all right now with a real professional seemed worth the pain. I continued to limp and waddle my way around and over to the medical side and was completely out of breath but impressed I had made it.

The receptionist was very kind, but the look she gave me when I told her I had been sent over for same-day therapy walk-in post intake only carved further daggers into my soul… She scoffed and said they haven't had a free walk-in slot open in 3 months. She said she would get me on the list, but all she could do was have a nurse take my vitals and get an appointment scheduled to see a psychiatrist for medications the following week. I felt so beat down and beat up. By the time I got back to my car, I did not feel like I had made progress and was only beaten down every step of the way.

The following week, I met with my new psychiatrist, and he ended up being very smart, very kind, and very easy to work with. He always wanted my opinion and over-explained anything I asked down to the fine points on how the molecules of certain chemicals are metabolized. He seemed to appreciate that I actually understood everything he was saying as well. We only messed with my current med dosage so as not to mess things up too much. I even convinced him to give me a children’s dose, as I was nervous about doubling my prescription since I’m typically super sensitive to side effects and symptoms.

When I first started Cymbalta, I was sick for 2 weeks with flu-like symptoms. The only reason I kept taking it was because I read everywhere that it was a normal reaction and would subside after two weeks, and they were right. Plus, at the time, I was having uncontrolled and unknown-triggered panic attacks daily. I could barely function for 2–3 hours a day due to crippling, overwhelming nerves. The sickness for two weeks straight definitely snapped me out of it, as I was just struggling to eat and survive. After those two weeks, I was feeling much more mellow, and my attacks were all known triggers and reduced to anxiety attacks. I was able to gain better control of the overwhelming thoughts too. We upped the dose a tiny bit since the signs seemed to point to it working, at least moderately, before.

He also wanted to change my headache medicine to a form that was able to fully cross the blood brain barrier. Hydroxyzine HCL (aka Atarax) is something that had been helping me with migraines/headaches, nausea, allergies, and anxiety a bit too. I had started taking it as needed, then discovered it was good for anxiety and allergies too and began taking it daily. The psychiatrist said this form did not pass through the blood brain barrier and that I would see better anxiety relief results from the alternative version, Hydroxyzine pamoate (aka Vistaril). So those two small switches to my current meds seemed like a perfect start and compromise to being nervous about starting something brand new.

The next day, I had a meeting with my new case manager for further assistance needs intake. She was incredibly and uncannily similar to the original intake lady. This one seemed a bit more hippie and eccentric, but she still could not help but interject her own personal stories about her incredibly tough and triggering life. It was beyond hard for me to pay attention, as I was having such a deja vu and dissociated feeling all at once. I did not relate to her struggles and personal battles at all. She was trauma dumping on me, and she really didn’t even have that much she was REQUIRED to tell me or work with me. In fact, the case manager paperwork is a total of one page and about 10 questions total. Pretty general and supposedly simple questions like “Who is your direct support system?” “What are your personal strengths?” blah blah blah… She caused the meeting to be over twice as long with all her storytelling and personal coach lectures about her deeply difficult life. I typically love hearing strangers life stories, I'm very accepting and always interested. This moment in the middle of a mental health crisis? I wasn't sure how much more mental load I could actually take... 

 

 

Please never hesitate to seek help in any manner of crisis, EVER. You're ALWAYS worth it, you matter, you are loved! 💗

 

link to instant online chat for mental health crisis support:

https://chat.988lifeline.org/

 

USA based links for mental help assistance: 

https://www.samhsa.gov/

https://www.nimh.nih.gov/health/find-help

 

Scooting Towards Rock Bottom

During the initial consultation with my regular orthopedic surgeon, they did not see anything broken on the newest X ray, or any signs a bone gives that it was recently healing from a break. I was told that it was a very bad sprain that can take anywhere from six to nine weeks to recover from, and possibly longer. EDS makes me heal more slowly and recover at a much slower pace than the typical medical timelines. I was given a smaller boot due to not being able to even lift my right leg to take a step with the massive and heavy thing strapped to it.

I had also been given crutches at the emergency orthopedic clinic, but they were causing my shoulders to dislocate. I watched a few videos on how to properly use the crutches and it did not help. Where my arm meets my shoulder joint, the collarbone meets up there too and does something funky, meeting up with the joint at the wrong location. This causes me to have very pronounced collarbones while also having my shoulders not properly aligned. The left shoulder has a minor tear not worth surgery, so it is much weaker than the right as well. The doctor went ahead and wrote me a prescription for a kneeling scooter like assistance device to be able to wheel around on and not rely on my very unstable arms and shoulders to hold me up.

As soon as we picked up the scooter, I instantly felt more capable. The intense pain in the top half of my body was instantly relieved and allowed to rest. However, my ankle, foot, and even my toes were in extremely intense pain still and showing no improvement. I had to keep myself taped up daily. Across the bottom of my foot, around the back of the heel, down the outside edge of the foot, and across the top of my foot just below my toes. It was the only configuration that kept me from feeling like red hot pokers stabbing straight through the bottom of my foot.

More time passed and it was now two weeks post injury when I was able to go back and check in with my ortho again. Yet AGAIN more X rays, thankfully a different tech this time, but still nothing showing up on the imaging to suggest bone damage done. They attempted to request an MRI approval from my insurance, but it was denied. My insurance insisted I attend two weeks of physical therapy first to see if that would fix it before they would approve. This was despite the fact I could not walk whatsoever still at the two week mark with little change in pain levels…

I then went right downstairs to their personal PT clinic and signed up for the first intake appointment available with my previous therapist. The soonest appointment was still seven days out… so more waiting before I could even begin the required test my insurance insisted on. Physical therapy typically has a very set amount of visits per year that your insurance will cover. Mine says I get 24 therapy visits a year. I have always found it incredibly harsh of insurance because that 24 appointment allotment includes occupational therapy, speech therapy, and physical therapy. If you needed all three post car wreck or something else horrible, you would get about eight appointments of each. They like to do one to two appointments a week with those types of things, so you are looking at four to six weeks of therapy tops for multiple therapies stacked.

I have always tried to use my PT allotment very sparingly due to never knowing when my next injury will be or how long my recovery window will truly be. Being forced to use four appointments up out of my total was very upsetting to me. I was still assuming I would have a hip surgery that year needing 12 to 16 visits at least, but more therapy could be very likely beyond that typical timeline… And I REALLY want to be able to walk as pain free as possible. Of course, insurance was not going to refund or give me back the four visits they required me to do that were NOT requested by the doctor, because they are just evil like that.

My physical therapist was very kind and extremely accommodating, however he had to go through the motions as well to treat me as a recovering major sprain. We kept it beyond simple but I was still dying for days after each visit. By the third visit, I was worse than I had started out and I flat out refused to come in for the fourth and demanded an MRI ASAP. Due to waiting for PT intake, this was about five weeks post injury date at this time.

I was now beyond depressed. To say I had dissociated the weeks away at that point would be an understatement. My mental health was so bad BEFORE the injury that post injury I was a walking shell of a person and that only degraded further and further the longer I went on being unable to walk. It is an extremely blurry time in my memory and I only cope further by refusing to process past emotions once realized. Having to work through painful memories makes it feel like I am reliving it all over again, so I do my best to not pry too hard at the fuzzy parts of my brain. I am not able to even accurately count the amount of existential crisis moments I had in total last year, but at least a handful were during this time of intense pain and incredible struggle.

I fully lost the ability to function in most capacities. I was getting so confused and having constant panic attacks regarding my social life and my ability to communicate grew weaker and weaker too. I ended up not trusting myself for a bit and had to quit everything. I had already stepped back from traditional social media way back before COVID, however I now had to turn off all Discord and Twitch notifications. I lost myself and I could not trust my thoughts or actions any further.

I attempted to just be a lurky turkey on Twitch a few times (watching but not talking) for about a week, but with the super exciting live chat in communities I love, I would end up feeling like I was missing out. I would want to contribute to the conversation or wish to comment on the topic, but the second the thought would even cross my mind my heart would race. My hands would be drenched in sweat within a few seconds and my stomach would suddenly be in my throat. Just the THOUGHT of speaking triggered anxiety attacks. I maybe tried a few more times to speak or type in chats and each time it would take a full 20 to 30 minutes just to calm down and not feel like I was going to pass out from my heart beating out of my chest.

The situation of my circumstances was so far out of my control I felt beyond helpless. I had a couple friends attempt to reach out, noticing my silence. Those are some of the brightest moments I can remember during that period. The sweetness and kindness I felt in those moments were like an oasis in the desert. My childhood friend who lives in Illinois ended up buying me the entire Fourth Wing book series and I can easily say, that series helped save my life and mentally survive. I feel like I was a horrible support back. I feel like I failed everyone in the past year, including myself. I could not bring myself to be negative any longer, it seemed like I had nothing good to say so I just stopped saying anything. I cannot stand the thought that I have hurt someone or let someone down. My biggest fear in life is disappointment. This past year I have only felt completely worthless and the biggest burden to anyone who is unlucky enough to know me.

I do not know who I am or want to be anymore. I have spent a full year grieving a life that I imagined I would live, maybe working with animals or in a museum or library. It was the deep depression and grief that finally forced me to seek help.

Each day had become a battle for survival. However, my horrible insurance does not cover much and only provided me with the worst and worse options for mental health care. It does not help that Oklahoma has a massive doctor shortage because smart doctors do not live here if they do not have to! I ended up with my only option left which was to accept the free state mental health clinic as my treatment location. My thought and hope was at least the therapists must have seen and heard the worst of the worst, plus any actual GOOD (typically super expensive cash only) doctors use that place as a way to rotate through and gain further experience with cases they would not normally see in their private practice. I really needed any help I could receive as I was very much at my lowest low.

 

 

An Escape from Humiliation

 Once in the room, the nurse was already pissed at me for not being the correct “Rebecca” she wanted and tried to make light of the whole name mix-up by saying, “Har Har Har, that's why we take pictures of you and attach them to all your files!!” … But I looked nothing like the young teen and our birth dates are also directly on the top of every chart as well… Then she proceeded to tell me it was just badly sprained because of how recently I hurt it and it had no visible swelling or bruises yet. I told her I couldn’t put any weight on it at all and pushed her that the extreme pain and the “pop” made me more concerned. She sent me for an X-ray and I was wheeled away for imaging only after the radiologist came to get me, and I only made it a few feet within the first few minutes. He was so confused why the nurse hadn’t left a wheelchair for me in the first place… After the X-ray, a doctor came in and said they didn’t see anything on the X-ray so it’s not broken and I just have a bad sprain. He said he would give me a boot and some crutches and to follow up with my regular orthopedic surgeon in a week. The boot he brought in was so tall and major overkill. It basically went up to my knee! Plus, it also weighed like 7 lbs and every step with it even raised shook my whole foot and caused insane pain with each extreme jolt. By the time I made it down the hallway and out to meet my mom with my car, I had to tear it off because it was causing more pain than before.

When I got home I iced it and kept it elevated and unwrapped because the pressure seemed to be horrible and, with the adrenaline starting to wear off, I was feeling the extreme truth of the pain and damage for the first time. My mom got me all set up and headed home. I don't remember much of that night as dissociation is my go-to for dealing with any extreme stress, including pain. I remember my husband had to work a closing shift so at some point after my mom left, my dad came over. I know Princess got to bed somehow (either my mom or dad) and Rayne managed to feed himself, but I’m foggy on those timelines and details.

That night with my dad I couldn’t contain the pain further. It hit me at a full force of a hundred raging bulls. The adrenaline was trickling out fully, leaving me to bottom out, making me giggle and laugh at random things because I was way way past the point of crying. I try to be tough in front of others and the thing I remember most is my walls were 100% broken down and I couldn't fake being okay. My dad saw me at my lowest low that night and I wish that on no one, especially when you don’t know what to do to help. My dad is the coolest headed person in the entire universe and in this moment he was calm and collected 110% even. After testing and observing, studying and monitoring, he asked if he could test placing athletic tape in certain areas to give what seemed to be the most sensitive spot support, and hopefully relief. He went shopping for supplies and came back with lots of tape and bandage options. He found a more padded medical tape at Walmart and used that to wrap around the back of my heel first. I instantly felt like the weight of an elephant had been lifted off of me, and knew we were on the right path!

My dad seemed shocked yet very happy with how instantly his medical diagnosis and hypothesis was proven correct and we began to cover my foot in supportive tape along the most painful areas. The relief was massive and I was able to finally start to relax. I knew returning back to the hospital was not going to get me anywhere since nothing showed up on the X-ray and there was only the tiniest of bruises even visible now. I was so scared of being in blinding pain all evening and I was so very thankful to be handed even the tiniest of relief. My husband came home and my dad handed me off into his care. I was finally able to eat dinner and pass out for some sleep.

The next morning the swelling and bruising were about the same yet I still could place zero weight on it at all. That next day also happened to be my husband’s and my 16th anniversary where I had the evening planned for an escape room and romantic dinner and woke up crushed with the feeling that it was all to be ruined…

My mom brought over a wheelchair that was very old but working and Jacob was determined to just modify my plans enough to be able to still feel like it was a special time. We chose an escape room that was in town instead of 45 minutes away, and just a bit lower quality. We also pivoted to a favorite chain of ours, Outback Steakhouse, for dinner instead. The pain was only absolutely excruciating if I attempted to put any weight on it at all so a wheelchair seemed doable for a short adventure.

The escape room might have been smaller and less detailed than our typical rooms, but it was still super fun. The theme was Jumanji and it had juuuuuust enough room inside for me to be able to wheel around inside and turn around fully without taking up all the space. We got so close to beating it but the problem was there was a clue under a vase on the ground we didn’t notice. I had poked the vase a few times with my toe to get a few better looks at it, but didn’t want to knock it over or break it trying to pick it up. At one point I did reach down and almost lost my balance and fell out of the wheelchair but thankfully corrected it just in time!

This place gave timed clues so we couldn’t ask when we were so close to the end but stuck. So we just had to wait and the clue screen finally provided a hint that helped us on our way and beat it at the very last second! Jumanji is such a classic that the whole adventure was a blast in itself, but being able to win even at a disadvantage, was very exciting! The wheelchair was semi-rusted and extremely heavy, but I was beyond thankful for its ability to allow me to do something I couldn't have done without it.

After a week post-injury I was able to get in to see my regular orthopedic surgeon. At any injury appointment they are going to take updated X-rays to see if there is any further signs of healing to locate possible tiny fractures or injuries not previously caught. Once wheeled into the X-ray room I was both shocked, and further embarrassed, because the X-ray tech who had done my foot at the emergency clinic was now on rotation at THIS clinic today. Making this the third time I had actually run into him in a 30-day period at 3 different locations. It was so awkward because while I am typically the most perfect patient on the planet, I am also an anomaly with my more rare disorder. So deep in my beyond-embarrassed brain I could basically feel the thoughts of judging how weird and strange my body must be to live in.

https://rarediseases.org/rare-diseases/ehlers-danlos-syndrome/

The whole injury and treatment was so very humbling and one of the most publicly embarrassing things I’ve had to painfully (both physically and mentally) push through. Something I’ve learned from being in pain so much for so many years, is that pain is a mental battle as much as it is a physical one.

 

"The Story of Us"
 Acrylic on Canvas painting done by me as a 16th anniversary gift to my husband

 

Hip Pains and Broken Things

Remember that hip I hurt waaaaaay back in my Petco days? If you want to refresh you brain on that story you can here:
https://riverorchid.blogspot.com/2025/11/from-bruises-to-brain-strain-covid-pivot.html
When I cleaned a tank at a weird angle for a few hours and couldn’t walk for 3 days? Well… I started having that old injury begin to act up more and more. Being more sedentary during my hand recovery I’m sure didn’t help. Also, having a majorly clingy velcro baby who couldn't walk meant that she was being carried around on my hip almost always. I needed my right hand free to use so she was always on my left. The constant weight and wear I caused by never switching hips and that end up causing a tear in the cartilage around my left hip joint and socket. So now I have a torn labrum in need of repair. My orthopedic surgeon had no problem doing an MRI of my hip for me and confirmed the labral tear, plus he discovered the other chronic pain issue caused from my original petco injury was a majorly inflamed bursa in that same left hip, called bursitis. They suggest going in and patching it and doing some sort of minor graft over the tear while also going in and draining the extra bursa fluid as well.

Resource educational links:

https://www.mayoclinic.org/diseases-conditions/hip-labral-tear/symptoms-causes/syc-20354873
https://houstonsportsortho.com/trochanteric-bursectomy-hip-doctor-sugar-land-pearland-houston-tx/
https://www.conmed.com/en/products/allograft-cartilage-and-tissue/allograft-dermis

The surgeon said that if I don't repair the tear I will eventually have such bad hip stability that it will wear down the whole ball inside the hip socket and I would then need a hip replacement in about 10 years. That means a surgery and repair is fully preventive as well as a chronic issue treatment too. It’s just so. freaking. Scary! It’s a much longer surgery than I’ve ever had before, even if it is in a pretty invasive spot on the side of my body. The procedure itself would be considered arthroscopic surgery, a minimally invasive surgical technique using a thin, lighted camera (arthroscope) inserted through a few small incisions. Completely outpatient and would be sent home the same day as the procedure. 

We started to plan out a good timeline for this to happen. I was told I wont be able to walk for two weeks plus, and then I’ll be in PT for 10-12 weeks after that. With two kids schedules, combined with my medical schedules, COMBINED with my husband’s heavy work schedule, this is something that needed delicate planning to make it all work. It seemed like right after our daughters 3rd birthday (April 14th) so that I could have my full abilities to plan and be there for her big day. Especially with her being so very sensitive to other’s struggles and pains. My husband and I’s wedding anniversary is the beginning of April as well so I was hoping to get all celebrations out of the way before I ended up in crutches for a few weeks. We thought the beginning to middle of May, or even end of May (when school let out) would be great timing for the least amount of stress. 

Then, the day before our 17th Anniversary, I MAJORLY injured myself… While picking up my daughter from school I had asked if Princess would let me hold her art or if she wanted to carry it to the car and she INSISTED on carrying it herself, so I let her. Once we stepped outside the paper caught in the wind and blew out of her hands. She instantly started screaming at the top of her lungs and I let go of her hand to rush forward as fast as I could with plans on at least maybe stepping on it or getting ahead of it to grab it. After just two steps of attempting to sprint forward I completely twisted my right ankle inward, feeling a horrible pop, and fell to the ground. Princess now screaming FULL bloody murder. 

For those who haven’t had the pleasure of my daughter’s screams…She is part bat part dolphin with the level of super sonic volume abilities and major decibels she can reach. The scream of a banshee, an extreme shriek you never wish to hear again and might leave your brain a bit fuzzy for a few hours later as well. When she was a baby and discovered screaming for the first time, she did it for fun for about a month straight…cracking herself up often! I would joke that she was really growing those lung muscles and prepping to be an opera singer someday, however I would be too deaf to hear it by then due to the volume damage. 

I believe the screaming was what triggered me into being very functional while in complete painful shock. Another mom had also heard the scream a few cars away and ran over and stomped on the art and walked over and handed it to me and walked off. Leaving me still on my butt in the middle of the parking lot with Princess still freaking out. As she walked off I joked something people pleasing like “Now if only i can get up! Har har har!” feeling super embarrassed… and then told Princess it would all be okay and focused on getting us into the car. I felt no pain, yet I knew it was bad with how far it folded over and the “pop” sound that is never a good sign. I got the traumatized almost 3 year old in the car and told her I would need her to be very quiet so I could focus on getting us home. 

When I stumbled to the drivers side and fell into my seat, I quickly looked around for anything I could use to splint or wrap my foot. A few months of reading exotic dragon warrior tales where the main character also has EDS made me go into full war time mode and splinting as soon as injured to be able to push onto the next horrible thing in a horrible emergency was what flashed through my brain. Quickly, I found one of my daughter’s onesies that had fallen out of a bag and used it’s long sleeves and large middle to support and then TIGHTLY wrapped my foot to then be fully immobilized within seconds. 

I then sat there and weighed out my options. If i had someone come pick me up then there would then be the issue of how to come back and get my car later, plus I knew most of my helpers were all very busy at that exact moment. I felt the only real choices were either drive home and self treat until I can tell how bad it is, or drive straight to the hospital and figure out how to deal with a worried 3 year old on my own while waiting and possibly being treated. Plus, what if they would have to take me away for xrays? She definitely couldn’t come to the hospital with me for sure… So, coursing with adrenaline, I drove home. 

It was my right foot that was injured, and I don’t remember much of this drive due to the shock and pain, but I do remember it as one of the most painful things I’ve ever done in my whole life. It was about 15 minutes of using both my right and left feet to drive me home. Every single press down of my right foot felt like red hot poker being shoved in the middle of my foot and all the way up my leg. I made it home, set Princess up with her leftover lunch and crashed into bed. 

Being able to breath for 2 seconds finally made it all so much worse. The pain was now non stop hot pokers and only getting worse. I couldn’t put weight on it and I was starting to feel panic in the realization I truly did need a hospital. I called my husband but he was at work over 40 minutes away with no back up manager showing up to cover for another 2-3 hours at the fastest. He was so panicked and freaked that he couldn’t come to my aid and I just wanted to downplay it, telling him to not worry and that I would figure something out. As soon as we hung up he tried to call my dad, however my dad was deep in a meeting with my grandma and a realtor helping her through the last steps of selling her house. He then called my mom and was able to call me right back reassuring me that my mom was on her way asap. 

We loaded up into my car since it had the carseat already installed, and I hopped my way to the car as best I could manage. I was impressed it hadn’t started swelling much around my crazy tight wrap but I was thankful since I knew that inflammation only comes with further pain. When we got to the Emergency Ortho clinic everything only proceeded to get more and more embarrassing… After walking in, my mom and Princess had gone and found a seat in the far corner to keep the little one out of the way of check in. However they had taken my purse and I had to yell across the room to my mom to come back over with my wallet. After providing insurance, they wanted a simple $15 copay. I hadn’t worked in forever and had nothing in my personal bank account for months at this point. My husband had given me a credit card to use towards medical bills only just a week prior so I pulled that out and gave it a swipe. Of course, just my luck…It declined. I tried my bank debit card but it got denied as well. I then had to proceed to AGAIN make a fool of myself in a crowded waiting room yelling for my Mom yet again. She doesn’t hear well so the first time I tried to reply to her “what do you need?” she didn’t hear me meekly state “I need help with payment.” Prompting me to now need to raise my voice further to ask across the room for her help paying the bill for me instead. I wanted to cry from both the intense pain and the crippling embarrassment.

After waiting 30+ minutes it was getting close to the time my son Rayne needed to be picked up from school. I spoke with my mom on how we should further plan and coordinate. We agreed she would go pick up Rayne then take both him and Princess back home. She would then drop them both off while Rayne looked after Princess at home and out of the way, then drive back to me. Since I was exactly where I needed to be, that sounded like a perfect plan. After about 15 more minutes a nurse walked out and called for “Rebecca” and a young teen and her mom who were closest to the nurse jumped up and followed her right away. Since the teen girl and her mom had only been there about 15 minutes total and was one of the most recent people to get checked in, I was preeeeeetty sure the “Rebecca” being called was supposed to be me. But they didn’t come back instantly so I wasn’t sure… Then about 10 minutes later the nurse, teen and mom came back looking embarrassed and the teen and mom sat back down while the nurse very gruffly yelled out “Rebecca RIV-ER!” I super slowly then hopped all the way across the room feeling like a complete circus spectacle at this point…

 

 

Living Life Bendy

The scariest and most deadly form of Ehler-Danlos is the heart or vascular versions. Let me back up for a second and tell you a bit more about the fine details of this disorder. It’s easily described as a dysfunctional collagen issue. That’s the stuff that basically holds your whole body together like glue. It’s everywhere…skin, joints, organs, blood vessels, all of it. So when it’s faulty everything feels loose and unstable. For me, that shows up as joints that bend too far, pop out, sprain easily, and just generally refuse to stay where they’re supposed to be. It’s not like a cool party trick flexible (though I can perform many “tricks!”) it’s more like, “Oh great, my shoulder slipped out while reaching for the milk, again…” or, “I sat down and turned sideways slightly and caused my whole knee to come out of its socket.” Both examples are also true stories...

Pain is a permanent houseguest. My skin bruises easily and cuts, injuries, and surgeries take forever to heal. Migraines and stomach issues are also super common symptoms. It’s an invisible illness, and those of us with EDS have adopted the nickname “Zebras,” a term that comes from the phrase, “sometimes, when you hear hoofbeats, it really is a zebra.” This demonstrates how common it is for misdiagnoses when it comes to a random variety of symptoms. Each EDS patient is completely different and has their own individual difficulties and issues. This makes it hard to diagnose and especially hard to treat. There is no cure, the main goal is management. Physical therapy, braces, pain interventions, and using assistive devices and wheelchairs are all part of it.

I’ve quickly become a very capable ambulatory electric wheelchair user. It has been such a relief to have the freedom to use my “spoons” for the activities I choose and stick to the chair for everything else when I’m completely out of steam. I don’t have to spend every moment dreading having to get up and do something active. I can wheel back and forth across the house all day long with no energy loss whatsoever. I finally have some freedom back, and it has been beautiful.

The hardest part has been this balancing act of wanting to do normal life things like chase little Princess around or take our dog for a walk. I know that if I do those activities, I will be punished for it later. My choices are to push through and pay for it, or I can pace myself and feel like I’m being lazy and missing out. It’s an invisible disability, and it’s been even hard to accept myself. I’ve had to come to the realisation that I’ve been literally grieving the loss of a future I dreamed of but can no longer have. I am grieving the loss of self and abilities. It’s been a humbling and depressing process to navigate. I also battle with the heavy weight that looms constantly over me like a dark cloud raining reminders on me that I am a burden on those around me. My issues don't just affect me…they touch every single person in my life too and I hate that so very much.

It hasn’t been helpful at all that this is the worst state and location for mental health. Every good therapist or psychiatrist that had the abilities to, has abandoned this miserable state. This awful state that will literally prosecute those doctors who even HINT at reaffirming or treating any sort of gender dysphoria suffering patients even. It has taken me three years to find a therapist and doctor to see and treat me. They are pretty much burnt out and barely available… but I AM trying, okay? I am. My mental health is a major discussion all on its own. However, let's swing back to vascular EDS.

It’s scary stuff! You don’t want to be messing around with the heart or vascular system getting too flexible. I found a Cardiologist right away after that geneticist appointment. They said the ECG showed I had a minor arrhythmia and they did want to run a full CT Angiogram and echocardiogram following that too. The CT contrast was so painful!! It burned like lava for about ten seconds, and I had no idea to expect that one bit. The Echo was a simple ultrasound-like test with zero pain this time, thankfully. I’ll take any diagnostic test that involves zero pain over anything else please!

They found my heart to be mildly enlarged and a mildly leaky valve, but the aorta was perfect, and there are zero signs of aneurysms which would be the typical vEDS diagnostic criteria. After that, the doctor was totally done with me. He was like, “Our findings are pretty normal, and we can recheck in ten years.” I guess a mildly enlarged heart and minorly leaky valves are completely normal. And then he refused to listen to my other symptoms that are very Postural Orthostatic Tachycardia Syndrome heavy (POTS for short). Basically, I have super low blood pressure, always noted every single week by every single doctor I visit. When I stand up too quickly, my heart rate skyrockets, blood pressure drops, and I get very light headed and have tunnel vision. I’ve passed out a few times throughout my life just from standing up too quickly. The first time was at age eight, in front of my whole class! It makes doing things like standing still in a line a marathon, or getting up from a laying down position a very slow process. I get overheated very easily and am prone to heatstroke. I have to balance a heavy salt intake with lots of fluids for bonus hydration as well.

However, he did not want to listen... He wanted to TALK. He babbled on and on about how he doesn’t ever give out multiple diagnoses to people because he doesn’t believe it to be helpful in any way, how dumb orthopedic surgeons are, and that I have temperature issues because I must not dress appropriately. He said the worst thing to possibly wear is HALF SLEEVES. But those are my actual favorite cut of shirt because of the temperature regulation control they provide. He was nuts, and I cut him off after he was like, “I promise I’m treating you the same as I would my own sister! Har har har!”

I currently have a three-month wait to see a new cardiologist who I plan on getting a formal second opinion from and official POTS testing. I’ve also gained a bit of weight which is horribly abnormal for me. I’m only mildly worried its some form of edema, especially since it’s all mainly been gained in the lower part of my body. I also have a weird thing with reduced circulation in my hands and feet called Raynaud's Phenomenon. It makes my fingers and toes turn weird colors and feel numb/painful when triggered by cold or stress. I only need to make sure and double check on my heart before any more surgeries pop up.

Surgeries are a reality I need to prepare for being a lifelong occurrence as things break down and need to be put back together. My current avoidance is a left hip surgery and a double shoulder surgery I haven't even acknowledged in a year. Nowadays my left shoulder rarely stays in its socket. Subluxing is the term for when a joint partially dislocates. My right shoulder subluxes often but hasn’t come out all the way in a few months. And do I go to the doctor when this happens? No way. It happens so often, and they make me take multiple x-rays anytime I try to say I have something for them to look at. Like the last four x-rays don’t count. It’s not like you can even see the tendons and ligaments on an x-ray. If I broke a bone dislocating, I WOULD KNOW! My current freak skill is how well and effectively I can put my own shoulders back in their sockets when they fall out. Like the ragdoll Sally, from Nightmare Before Christmas, after she flings herself from her prison of a tower. I also have to wake up most mornings, fling myself out of bed, and put myself all back together. Piece. By. Piece… 

 

 

 

 

Validation, Answers, and a Plan

 I still had panic attacks regularly and maintained little control over my anxiety. Our Princess got accepted into our state’s Head Start program due to her delay in walking. The funny thing is that when they formally tested for delays at the health department, the ladies were so impressed by how cognitively advanced she was that they were able to practice some of the more advanced kids' testing that they said they never get a chance to do. They only found a 25% gross motor delay, based on her not walking but loving to climb everything. They needed a 25% delay in multiple categories to pass her into the program. However, the lady in charge of the assessment told me that if she and the fellow assessors all agreed, they could auto-qualify her based on circumstantial needs. Since they saw her using me as her personal walker and having zero independence away from me, they all agreed that it was greatly limiting her learning and exploring. Using me as scaffolding so to speak. Especially based on how far ahead she was in everything else, they figured she would take off even more mentally given the ability to navigate her surroundings independently. She had treated me like scaffolding for so long that my hands had become just extra tools for her to use.

Her meetings with the early intervention specialist was always a super fun playtime for her. Since her case was so unique and I’m also rather observant and smart myself, it was very much a team effort between the both of us combined with my dad, to navigate all of Princess's unique quirks. And many she has! We used to call her “OCD Baby” as a nickname we jokingly used for a while until it became evident that this was actually a major possibility for her, diagnostically. She loves to count and control. Control and independence are VERY important for her. She gets very frustrated that she can’t do everything the big people can do, and it’s been a major drive in her life to learn how to do everything perfectly. She loves multiple-step instructions and work work work! The more repetitive the work, the better. She also has the name “Danger Baby” that we still use VERY often. She sees a challenge and she turns it into a goal. Anything she is told she can't do, she never forgets about it and keeps reminding you she’ll be big enough to do it someday. Climbing is her most favorite thing. She climbs everything all the time, mainly using all her leg and arm power.

During that time we would go on very long walks every day. She is a MAJOR “Nature Baby” too and would live outside 24/7 if she could. Ever since she was super tiny, she would just stare at the trees whenever she could. Then as she got older we would sit on the back porch and count them. When she was just starting to be able to hold my hand while walking, we would take very long walks all around our VERY big backyard or at our local parks. She loved to walk, walk, walk. It was such a big adventure for her to find as many trees as she could and say “Hi!” and hug them all. She was the sweetest, tiniest tree hugger! When the interventionist suggested physical therapy for her to begin walking independently, THEN Princess’s doctor finally agreed. Within two weeks of starting PT she was walking on her own! We focused so much on her core muscle strength that the PT believed Princess must have missed gaining it by not correctly pushing up and holding up her belly and hips to crawl. She did tons and tons of baby sit-ups like a champ! She had a great time at PT but was not always 100% cooperative. After six months of PT, she was at or above average for gross motor skills for her age. She had VERY much made up for tons of lost time.

We were still concerned about how she would turn her feet inwards to walk often and were also able to get a referral for a formal pediatric orthopedic surgeon. He was able to reassure us that her bones and feet were developing normally via an x-ray. The cutest freaking x-ray results I’ve ever seen in my whole life (and i’ve seen a pregnant guinea pig x-ray!) Tiny little human toddler bones were so precious and adorable spread out and surrounded by so much squish! He did a physical exam on her and mentioned the same comment her doctor mentioned every single time she had done a physical exam on Princess: “Her hips are extra flexible.”

I had also been told that about myself so very often recently by my PT, neurologist, and chiropractor, as well as the many past yoga teachers I’ve had during my life. So, I made a comment and mentioned, “My doctors all say that about me too.” He suddenly got a VERY serious look on his face, stared directly at me, and said I really needed to see a geneticist as hypermobility is the main symptom of Ehler-Danlos Syndrome, and that it is a genetic disorder passed down via DNA, so it is highly likely that my children have it too. I was so surprised! No one had ever made a comment about my flexibility being bad, just always pointed it out and noted.

I went home that day and did a GREAT deal of research and was completely floored with the information I was reading. It all matched up. It was 100% me and all the issues I had been dealing with my ENTIRE life. I requested a geneticist referral and, after a three-month wait, finally got in to see probably the smartest lady in this entire state. She viewed and measured how flexible my joints are and their varying hypermobilities. We spoke about detailed family history and my own symptoms very briefly, too. She was then VERY sure I had EDS and spent the next forty-five minutes describing to me exactly how I must feel on a day-to-day basis and explaining in very scientific terms why my body is the way it is. It felt like a spotlight shining directly on the true person behind the curtain after being duped and fooled for 35 years.

I was so relieved and had never felt so seen in my entire life. I had been dismissed and treated like trash by almost every single doctor I had ever come in contact with. Now this genius, kind soul had opened up the potential for me to receive correct treatment while also being proactive about other degenerative issues that can be common with Ehler-Danlos as well. Her first piece of advice was to gather a team of specialists to get baselines started and everything intaked so that I could have a team in my back pocket for any symptom that could possibly occur as it arises! That is the only “cure/treatment” currently for EDS: treat symptoms as they occur. We sent out for official DNA testing too look for the scariest types that have known genetic markers.The first and most important task upon receiving even a general hypermobility diagnosis though? Check in with a Cardiologist! An extra bendy cardiovascular system is undoubtedly the scariest, and most deadly, out of the 13 types of EDS. 

For more info, check out this link from the Ehler-Danlos Society website:
https://www.ehlers-danlos.com/what-is-eds/

 

 

My Winning Surrender

 I wanted to hold off on physical therapy so I could get both hands surgeries first and do my therapy sessions for both hands at the same time, since our insurance only allowed a certain number of PT visits per year. However, by week four after the first surgery, I was still in pain and the wound was healing poorly despite no infection and tons of care. "If we don't start PT now, I'll be completely useless with two non-functional hands!" I complained to my surgeon. I THEN started physical therapy for my hands, as well as my neck and back, to maximize our visits and address my other major pains at the time. I also found a wonderful chiropractor who began working with me on my other issues.

Doing physical therapy twice a week and seeing the chiropractor once a week was a train wreck on my body. The pain and fatigue were so intense I could barely function. Thankfully, the electronic stimulation and ultrasound therapies provided the healing touch that the basic at-home exercises were not. My incision site was still beyond sensitive, but my range of motion and strength finally began to increase. Unfortunately, I struggled to gain any additional core muscles or neck strength by the end of the allotted sessions.

My husband had worked his way up to General Manager and was working more hours than ever. One of the “perks” of being a GM is this every two year massive international conference in Las Vegas. We went together as a family despite Jacob having almost every moment already scheduled out for him. Princess was the happiest and so overstimulated that she refused to sleep. For two nights she didn’t sleep more than an hour a night she was beyond wound up. The lights, the sounds, the people! She couldn’t get enough, she was the happiest 2 year old ever. The rest of us were exhausted beyond belief from the tons and tons of walking. The second day Rayne and I could barely move and Jacob was stuck in seminars and expos all day. By the afternoon Rayne and I had managed to make a half plan to walk to the aquarium then meet up with Jacob for dinner after. We loved the aquarium and went through it and then went backwards to the beginning and through it all over again. The next day Rayne, Princess and me went and explored more and stopped at an adorable hello kitty cafe. Rayne let me borrow one of his headphones and we listened together and sang along with the Hazbin Hotel soundtrack on repeat for most of the trip.

That last night we had planned to try to make it to Omega Mart, a trippy art installation like fun house in a sci-fi themed area of Las Vegas called Area 15. The problem was if we ALL were going, getting the car seat to the place and back was going to be a massive hassle. Not to mention micromanaging a 2 year old and 14 year old in full on sensory overload style of setting. We spoke to Rayne for a bit about the dilemma and he told us he would just stay in the hotel room with Princess watching ms. Rachel and all would be fine for the few hours we’d be gone. Rayne had watched his sister for short 15 min spans only before this so it was a big deal and lots of responsibility since we would be so far away. I’m so proud of him for handling it so perfectly, when we got back to the hotel they were exactly as we had left them. For such a short whirlwind of a trip, it was our first (and only) family of four vacation and I am so thankful for the experience.   

I finally felt ready enough for the next hand after pushing it 3 weeks longer than expected. If I waited any longer, I would run out of all LOA hours at work before my next recovery was finished. The left hand (luckily) went a full 360 degrees differently. It was still a three-minute surgery, but this time we knew which pain meds I needed on day one. I felt no pain until two weeks later when my medication wore off. There was so much less swelling the entire time, and I was able to start moving it within seven days. I was back at physical therapy by day 14 post-op, the day after my stitches were removed for the second time. I was told that since the carpal tunnel wasn’t as severe on the left side, that was most likely why it recovered so much more easily. I think the proper pain control and knowledge of correct bandaging and wound care the second time around had a major part to play as well.

One of the biggest struggles post surgeries was having to relearn all muscle control and muscle memory all over again. I had to completely teach myself the basics of art and drawing all over again. It was mentally and physically a hurdle that was extremely tough to push through. Eventually, I would get so deeply depressed, intensely stressed, or overwhelmed I would just pick up my sketch book and draw a small 2 inch by 2 inch sketch for 30 mins and I would focus so hard on it my panic and immediate stressors would melt away for that short amount of time. I’ve actually lost count of how many existential crises I’ve pushed through in the last 3 years alone… Drawing is probably one of the healthiest coping mechanisms I have, and I was sooooo glad I could use my need to escape to join hand in hand with my pushing to regain what was lost.

I was totally out of leave hours now. I was still so sore from the muscle I had lost and was attempting to rebuild. I felt completely cured of my carpal tunnel intense nerve pain as soon as the surgery was done, day one. Yet for some reason, I was still feeling so sore and painful, like my fingers were unstable noodles. Surgery recovery is a very mental hurdle to overcome as well as a physical one. I spent so much time helpless and completely useless to my sweet and very needy velcro baby after these back-to-back surgeries. My Princess was so sensitive to the whole experience, and I just hope she never remembers it. She has the biggest, most empathetic, and caring heart that you could ever imagine, and it also makes her worry very, very deeply.

During this time, I was only able to lie around watching TV and scrolling Reddit. I feel so very thankful to have discovered Twitch before this deep loss of function. I was able to stay part of multiple communities, all with their own authentic lives and distractions to keep me endless company. One member of a community was even a hand specialist, and we spoke a couple of times. He gave me advice and was curious about my status. He suggested finger strengthening exercises that paired well with my EDS too, and he recommended that I get sized and fitted for specialized finger splints called Silver Rings. I've been so incredibly grateful for the amazing people and beautiful souls I've met online. Living in such a conservative state is a culturally limiting state of mind, and I've been starved for the stories and lives that come with every individual person.

My husband is always the first to share everything with me and I everything with him. We love every same fandom, and our hobbies mesh well too. Our brains are in sync, and I am so very thankful for these last sixteen years together. We have been able to provide for each other that special weirdness that we both crave from life, and it honestly can't get any more perfect than that. I attempted to stream a bit and be more social because the connections were beyond interesting and the personalities so diversely authentic. However, my anxiety eventually took over.

Then the panic attacks started. They would come out of nowhere with no obvious cause, just a sudden, massive dump of adrenaline. It was an instant fight-or-flight, full-body response. My heart raced, my lungs tightened, my body was shaky and sweaty all over. My brain was on fire. The biggest problem was that I was supposed to start back at work any day.

On the first day, I couldn't even log in because the system didn’t recognize my hardware. It had been disconnected from their system for so long... I spent three and a half of my first four-hour shift on the phone with various tech teams, beyond frustrated and freaking out about how I was scheduled for a full phone shift the very next day. The next day, I tried a fix myself and figured out how to trick the system into letting me in by bypassing quite a few of their security settings (this absolutely confused the tech team even more later!) Then I instantly started bugging the supervisor line and operations team, explaining that I had zero training the previous day and had been gone for a very long time now and absolutely needed a retraining refresher.

They actually put me down quite aggressively and said I was inconveniencing EVERYONE because I was scheduled for phones based on expected demand, so now phones would be super busy because I wouldn't be there to do my part. They said I could take the day and start the next day on chats, but after that, I HAD to be on phones. So I took the day and read every single update and announcement, and I was still completely confused on multiple major policies that had changed while I was gone, including an entire credit card fiasco that didn’t make any sense.

And guess what my very first chatter was inquiring about? The super confusing credit card fiasco... I spent fifteen minutes speaking with superiors, back and fourth trying to understand it and read up on it while answering the lady’s questions via the supervisor team, giving me their partial answers on the phone while replying over chat. It seemed to be extra confusing because it sounded like REI was at fault but spinning it to the customers as something else out of their control... I only took single chats all day after that because I could not handle multiple research issues at all. My brain was on fire, and I was in major distress. That whole night, I was completely terrified to go back.

When I woke the next morning, I was beyond petrified with pure fear. I gave up and gave in. There was no winning when I was throwing up from the stress of not being prepared for such a fast-paced, high-intensity, high-dollar-value, and completely metric-based work. Not to mention I hadn’t actually spoken to strangers on the phone in FOREVER! It was just a bit too stressful a morning to really recall many details. However, I did snap out of the petrifying terror i was experiencing to very rapidly email my boss and quit on the spot 15 minutes before my phone shift due to a despicable lack of training/readiness prep before being thrown to the wolves.