My Story + Current Situation
I donāt know how to begin this post. To be honest, what Iām about to tell y'all may not help me out in any way other than giving me an outlet to vent. Fair warning, this is going to be a long post and I may ramble a bit but Iāll add a tldr; at the end.Ā
Let me start from the beginning.
My name is Stacey. I turn 25 years old on April 24th, 2019.
My story begins when I was 19 years old - a freshman at my local university. I was finishing up my first year of my undergraduate program in Biology, aiming to get a Masters or PhD in Genetics. I had many accomplishments; I was awarded a scholarship because of my GPA, a group project I was a part of won 1st place in a writing competition because our independent research paper was the best, and I was just living life and working on my future. I had to take the bus everywhere, I was moving around a lot, and I was working out regularly at my universityās gym. One day, as Iām walking to the bus stop, it felt like my right hip popped out of place and then slammed back in.Ā
At the time, it was a minor inconvenience. It hurt, yes, but it mostly just left me sore and it went away with some rest so I didnāt think much about it.Ā
I started questioning it more when it happened again over summer break. I was at a friendās house playing D&D when I felt an acute grinding sensation in my right hip joint as I stood up to get me a soda. This time, the pain was significantly worse - sharp and it took longer to go away. I started thinking that I was developing arthritis as my dad also got it young.Ā
It took a while to happen againā¦but when it did, it got to a point where I couldnāt ignore it at all.
I had picked up a seasonal job at Macyās. My first day on the saleās floor was Thanksgiving night going into Black Friday. We were understaffed and it was hell, but I made it through my shift which ended at 2:00 AM. A co-worker came to me and asked if I could pick up her shift the following morning and I took it because I wanted to work. On Black Friday, I started feeling that grinding sensation in my hip again but I worked through it - blowing it off as simple arthritis. I believed rest would help.
That following Saturday, I had another 8 hour shift but this time it was in juniors which was the busiest area. I was moving around a lot, had to bend over to pick things up off the floor, and Iām not even going to get into the mess left in the dressing rooms. Towards the end of my shift, I was limping. The grinding sensation only got worse and suddenly my hip was locked up. I could barely move and when I did I experienced sharp intense pain. I left an hour early because I could no longer do my job. I thought maybe I just picked up too many hours, so I decided to take the rest of the weekend to rest.
But the pain didnāt go away with rest. I was in pain for 2 weeks straight, hardly able to walk, before I finally went to see a doctor. I limped my way to the university health center and scheduled an appointment. The lady who saw me performed aĀ simple hip exam. I wasnāt able to walk much, so she mostly checked my hip flexion. Off the bat, I knew that I had lost some range of motion as we could barely bring my knee to my chest without pain. The fun part happened as she was guiding my leg back down.
My femoral head caught on my hip bone. It was audible, and yes it hurt.
She had a look of shock as she said, āYou are way too young for this.āĀ
I was prescribedĀ diclofenacĀ for the inflammation andĀ cyclobenzaprine (flexeril)Ā to relax my muscles and help me sleep through the pain. That same night, my mom took me to the ER and I had a x-ray done on my hip. The radiologist said that there was a slight chance I hadĀ femoroacetabular impingement (FAI)Ā (in laymanās terms: the bones are misshapen) on both hips, but would need more imaging to truly determine a diagnosis. I was prescribed hydrocodone (vicodin) for about a week to try and manage the pain until I could get insurance and see a specialist.Ā
Thatās where the fun part started.
Since I turned 19 that year, I was no longer covered under CHIPS Medicaid. I applied again, but was told that I do not qualify becauseĀ I didnāt have any children.
Yeahā¦you read that right. The state of Texas does not extend benefits to anyone over 19 without children.Ā
My only choice was a county program that helps low income people get medications and treatment so they can get back to work. I wasnāt able to apply until months later (a combination of not having my own transportation, busy schedules, and my mom trying to convince me that I would be denied.)
I was 20 years old when I finally found a doctor (weāll call him Dr. D) that could help me figure out what was going on in my hip joint. He took it seriously - performed another hip exam and ordered several lab tests. We checked everything under the sun: cancer, rheumatoid arthritis, lupus, etc. He got me on physical therapy, changed out my diclofenac toĀ meloxicam (mobic), ordered me an MRI, and referred me to an orthopedic specialist to determine how we needed to move forward.
The MRI I had wasĀ without contrast. The result was greater trochanter bursitis, or inflammation of the bursa which are sacs filled with synovial fluid that help cushion joint movement.Ā
When I saw the specialist in November of 2014, the chronic bursitis was the sign that something was definitely wrong with my hip. I was only 20 years old with no traumatic injury. Chronic bursitis is not common in someone that young, so he ordered me an MRIĀ withĀ contrast so that they could have better imaging of my joint. My husbandās grandparents paid the $932 to get it done in December and it was honestly one of the worst things I had ever gone through. When they injected the dye into my hip, the numbing agent didnāt work and it hit a nerve HARD and my entire body convulsed. They injected more of the numbing agent, but that also didnāt work so again my entire body convulsed as they tried to get the dye in. The third time worked because they decided to give me a stronger numbing agentā¦but it messed my hip up. I walked funny for three days.
When I finally saw the specialist again about the results (several months later because of an issue with scheduling), not only did I have bursitis but they also confirmed that I had cam type FAI (laymanās terms: the deformity is on the femoral head) and a 9mm labral tear.Ā
Since the condition was causing joint damage, the answer was surgery.
I was sent back to my primary care physicianās office, but unfortunately Dr. D wasnāt available so I saw a different doctor. (This may seem irrelevant, but it is actually very important.) I told her EXACTLY what the specialist told me, which was that I needed to get sent to San Antonio or Galveston in order to get treatment.Ā
I was assigned a new doctor. Weāll call him Dr. S. He told me about the denial when I had asked about it during an appointment for a different issue. I remember crying because I had no idea what to do. I was only 21 years old - I didnāt know how to navigate the medical system! Plus, I was very very broke. I wonāt go into too much detail, but I was forced to move out of my parentās because my dad is irresponsible and I was put in a massive amount of credit card debt because my own mother stole my identity and I ended up having to pay the bill for it because my mom was diagnosed with cancer and couldnāt work anymore.Ā
(This is only surface level by the way. The last 5-6 years have been absolute hell.)
That summer I was working two jobs. I had a GoFundMe page and I was just trying to save up enough money to possibly get me on an insurance plan to cover the surgery. I came home every night limping and crying, my husband having to half carry me and help me get into a hot bath just to try and bring the pain down enough so that I could do it all again the next day. School was rough as well and my grades were dropping.
I was destroying my body so much that it got to a point where I could no longer do my job as a saleās associate at Macyās. My managers were amazing and they did everything they could to help accommodate me, but it got to a point where I was unable to finish shifts due to pain and I was calling out often. I was running low on my attendance credits and I didnāt want to be fired for absenteeism.Ā
I go back to see Dr. S and I tell him I really need something, anything. What I was doing wasnāt getting me anywhere and my condition was getting worse due to the progressive joint damage. He didnāt really know what to doā¦saying things like "I canā believe they denied you - the whole point of the program is to help people get their treatment and yet theyāre denying you.ā I told him I had heard something about an orthopedic program at one of the hospitals in network and he put in a request for me to see one of their surgeons.Ā
At the time, I really couldnāt pursue the issue - I changed from a saleās associate to a wedding gift registry advisor at Macyās. It was a desk job which really helped keep my hip under control, but the problem was that my hours were reduced and I had no way of picking up more like I did with my previous position. I was having to donate plasma so often just to have food money that I actually have a permanent scar on my left arm.
I loved that job, but it barely paid the bills. I took a semester off of school so I could focus on working and babysitting my nephew due to a family emergency. Thankfully my in-laws paid me. Even though it was something I would have done for free, it really helped out.
But then Macyās had a huge company layoff in January 2017ā¦and I was affected. The position I had was being removed from my local store, so I was without a job. My depression took a big hit and it almost ruined my relationship with my husband. I wasnāt taking care of myself, I wasnāt doing my responsibilities that were required for my unemployment benefits and my insurance, and I basically became extremely dependent on my husband to a point that our relationship became unhealthy. It took a while to get me out of that rut. I started applying for jobs and I ended up getting hired by Aflac around the end of April, but I had to get my driverās license before I could be officially on board.
I understand that the above may not seem relevant, butā¦that summer was when things got even worse.
I wasnāt able to get my license in time to take the position, but that was only a part of the issue. In July, I was helping my husbandās business at a convention when I had one of the worst flares Iāve ever had. I had twisted the wrong way, causing my femur to catch on my hip bone, and I ended up on the floor in fetal position.
At best, the pain felt like I was being stabbed with an ice pick. At worst, it felt like every tiny movement I made was splintering my hip bone. The splintering sensation I had felt before, but not to this degree. My hip was locked and it felt like I was stuck in a vice. On the pain scale, I was around a 9. It was unbearable. I ended up in the ER where the only thing they could do was give me a shot and a prescription for Tylenol 3 (acetaminophen + codeine) to help me get through itā¦
Neither the shot or the medicine worked. While my hip was unlocked, I was still experiencing sharp pain that was so deep in my hip bone that none of the medications touched it.
It hurtā¦it hurt intensely and consistently.Ā
It got to a point where I had to borrow flexeril andĀ tramadolfrom someone while I was trying to renew my insurance. Yes, Iām aware that this is illegal - but I was out of flexeril and the meloxicam wasnāt working so we were trying to get me through the MULTIPLE flares I was having even when I didnāt do anything to aggravate my hip. The end of 2017 was exhausting for multiple reasons.
Once I got back on the county program, I had an appointment scheduled with a new doctor (weāll call her Dr. P) because Dr. S was no longer working in network.Ā
The week of my appointmentā¦was really rough. We had to put our dog down at 2 years old because he had severe chylothorax and we didnāt have the money or the means to seek treatment (plus it was so severe that seeking treatment could have killed him.) A few days later, Hurricane Harvey hit and my area was badly affected. My appointment had to be rescheduled.Ā
I saw several different doctors in the following months because Dr. P never had an opening available. I ended up needing a wheelchair to get around because my standing/walking limit was drastically reduced. Iām lucky to be able to stand for 10-15 minutes now compared to the 1.5 - 2 hours it used to be. I tried to apply for medicaid again, but was denied and advised to try and apply for disability. I didnāt have enough credits to apply through social security so I found an attorney and just gave it a shot. However, I got a rejection letter for representation due to the information that they received from my doctorās office.
I start questioning things at this point. What did they tell the disability attorney? We knew I needed surgery and that my condition was getting worse. What could my doctor have told the attorney that resulted in a denial?
I didnāt see Dr. P until May of 2018 and apparently, she had no record of my diagnosis and my need for surgery. The only imaging she could find on file was my very first MRI (without contrast) and so she was under the impression that the only issue was mild inflammation in my right hip.Ā
I ended up having to redo the entire process. I see the very same specialist again and he didnāt remember me. I had to get another MRI done and he requested an x-ray right before my appointment, but he never went over the results with me. He basically told me I need to āput up with itā and ordered me a fluoroscopy guided injection.Ā
I get the injection in October and literally minutes afterward I start crying because of how overwhelmed I was at no longer being in pain. To give y'all an idea, chronic pain isnāt always intense pain 24/7. For me, it feels like my hip is constantly bruised. I usually hover around a 2-3 on the pain scale and the more I move the higher it gets. IT IS EXHAUSTING. To finally feel ānormalā again was so overwhelming for me that I was a sobbing mess as we walked back to the car.Ā
That week I was so happy. My mental health immediately improved. I was able to walk around, go up and down stairs, even go on a camping trip with my ecology class and go hiking! All these things that I wanted to do I could finally do again with only minimal and MANAGEABLE pain. I still took it easy, but I was finally able to enjoy my life again.
The following Monday, a week after the injection, I woke up in severe pain. I had felt the familiar twinge the night before, resulting in an anxiety attack because of the fear my hip pain was returningā¦and unfortunately my fear came true. The injection normally lasts a few monthsā¦for me, it lasted one week.Ā
I go see the specialist for the follow up appointment regarding the injection. He seemed kind of confused, saying things like āAt least now we know the problem is your hip.ā I was beyond frustrated because WE KNEW FOR YEARS THE PROBLEM WAS MY HIP. He wasnāt listening to me! He even asked me if he had talked about surgery the last time I saw him and I told him YES. So to wrap up the appointment, he gives me a half-assed hip exam and requests that my PCP put in a referral for orthopedic surgeryā¦again.Ā My depression hits its lowest point. I even contemplated suicide and had to start therapy. Overall, I was not in a good place.
I donāt hear anything about the referral for months so I call and they tell me there are no orthopedic surgeons at the moment. So I make another appointment but this time I see a different doctor that we will call Dr. I because she was the one who put in the request for the referral. She was amazing! She listened to me, didnāt interrupt me, and she worked to make sure we got details regarding any hold ups so I wasnāt left in the dark. She even performed a standard hip exam on me to measure how bad my hip got. Anyway, she finds out that yes - everyone with the clinic card does not currently have an orthopedic surgeon because the contract with the previous one ended and was not being renewed. She encouraged me to keep calling, at least once at month, to check on the status of their hiring.Ā
My first call was in February of 2019 and not only was I told that there still wasnāt any orthopedic surgeonsā¦the county had also decided to no longer cover hip surgery as of this year.Ā
I made an appointment with Dr. P and was seen literally the next day because I was DONE. We gathered all the info we could to prove to them that I had been seeking treatment for years. She listened and she took me seriously. She put in a new referral that aimed to get me a one time approval, ordered physical therapy, and referred me back to the specialist so we could get this done. She also prescribed meĀ gabapentinĀ to help me out with some of the nerve pain I was experiencing because as of the end of 2018, my hip pain was causing issues with my knee. As of 2019, my ankle and foot started being affected as well. She theorized it was due to nerve damage and so she put a note on my referral for it to get done ASAP.
Which brings us to the present. I went to physical therapy and it caused me to flare upā¦repeatedly. I ended up having to resign from my job (that I only had for a month) because my absences were atrocious and I was constantly having to update my accommodations just so we can attempt to have my absenteeism reduced. (In the end, I had to chose between voluntarily resigning and be eligible for rehire in 30 days or risk being terminated and not being eligible for 3 years.) My last physical therapy appointment was Friday, April 12th because during my exercises my femur caught on my hip bone and caused a severe flare. The physical therapist put a stop on my therapy until after I saw the specialist because it was only causing me more trauma.Ā
Today, April 17th, I saw the specialist and we finally figured out why I never received the treatment I needed. To reiterate, we are on yearĀ 5since I first got on the county aid and started seeking help from them.
It turns out, all of my referrals were done incorrectly.
I was being referred to the local orthopedic department which can not do the procedure I need. On top of that, the specialist was trying to order me an arthroscopy for DIAGNOSTIC purposes - not an arthroscopic surgery. Somewhere in the mix there was massive miscommunication and things were not being documented correctly. My PCPs had no idea how to handle my case so it ended up being mishandled entirely.
Essentially, the specialist brought in someone from an internal department and they are now taking over my case because this is grounds for a class action law suit and they want to avoid that at all costs. She explained to me where the block happened and that they were no longer going through my primary care physician for referrals because it would risk continued miscommunication.
They admitted that the fault was on them. I understand why this happened because the hospital I go through is in a major transitional phase and theyāve been tearing down the trauma center and relocating, building new clinics, updating, etc. I even told her and the specialist that I am not mad at any one person, that I do understand - but they have to understand that I was a victim of this. I experienced YEARS of suffering that affected my physical and mental health, my education, and my ability to work. My condition has devolved to a point it never should have and it may have permanent life altering repercussions. My surgery may go from a simple fix to needing a replacement which would result in at least 2 more replacements later on in my life since they do have an expiration date and I am only 24 going on 25.
TLDR; because of the transitional state my hospital is in plus the fact that I was jumping between multiple doctors, there was miscommunication regarding the treatment for my FAI and it led to my referrals being done incorrectlyā¦and I suffered for it. I am now waiting on a referral that will send me up to San Antonio where they will be taking arthroscopic images of my hip joint so that we can further determine how to proceed with treatment. I may pursue legal action, but ultimately I just want something done so I can get on with my life.
So why am I posting all of this information here?
Because of the fact that I am now out of a job again, plus everything that I had explained above, I am opening up EMERGENCY commissions. We have bills to pay and we also need to be able to pay for this trip to San Antonio and unfortunately, my husband (who is currently employed by my previous employer, go figure) is not making enough to keep us afloat. We are in the red and will not make it through May at this point so we are already working on selling some extra stuff and getting ready to make some major sacrifices.Ā
I mostly write Victuuri but am willing to discuss other pairings. If you have any questions regarding what I will or will not write, just shoot me a message onĀ twitterĀ and we can discuss it.Ā
Commissions will be pay what you want - no minimum. Iāll literally take anything at this point. I know my writing can be a bit inconsistent so I donāt feel right setting a price. Hereās the link to my ko-fi page.
All I ask is to please understand if the commission takes a while to get out. I have real life things to take care of and sometimes my medicine makes it hard for me to stare at my computer screen. Just trust that I will get it done.Ā
Iām currently working on a piece forĀ hentipie. Iām hoping to have it out this weekend so prepare to see that soon! It wonāt be posted here due to the rating though, so youāll have to look for it on AO3.
Anyway, for those of you who took the time to read this ridiculous chunk of text, thank you. If you canāt help me out financially that is perfectly fine. I know and understand the struggle so donāt feel bad by my sob story. I just needed to get this out.
Talk to y'all again soon! <3
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