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