Growing up, most people tend to dream about what their future will look like. My dreams as a child were big. I wanted to do everything, from being an Oceanographer to becoming a High School History teacher. Most of all though? I couldn’t wait to become and mom and a wife. I imagined, as some little girls do, playing with my children, helping them learn and guiding them along their path in life. I imagined a happy home full of laughter and love and having a husband that I could dote on (yes, I know I am old fashioned… but not a bad thing to want to make your husband happy and let him feel loved in return).
I had my son at age 22 and I really got to do all of those things with him. We were so close, an unbreakable bond some will say. It was the stuff dreams were made of. He and I against the world. I met my now husband at age 28, was able to go back to college and complete my degree (in accounting), and we were married three years later.
Around July/ August of 2015, I found myself pregnant with my second child. As the pregnancy moved along, things got worse and worse with my back pain. At first, my OB/Gyn had suggested that the pain was from the poor quality of the rental mattress we were currently using in temp housing after our house fire. She then had suggested going to a Chiropractor to get adjustments done while pregnant. She thought it was just pain due to the extra pregnancy weight up front pulling on my spinal muscles. So… I went to a Chiropractor for about 6 months – but the pain only got worse. Thankfully, we were able to move into our new home by December of 2015, so we now had a new mattress…a good one this time, but it didn’t make much of a difference with the pain.
My daughter was born in May of 2016, but I still had some pain in my back even after delivery. Could it be the epidural that now hurt my back and that is the reason the pain didn’t go away? In my mind, it was something I could live with, just a typical back pain. No more than I had experienced waitressing or being A CNA in the past and being on my feet 8-12 hours a day.
On Christmas Eve 2016, we found out we were having yet another baby. A few short months later, EVERYTHING changed. My back pain was starting to become unbearable, but not yet debilitating. I was getting quick, sharp and intense pains in my back that would completely knock my legs out from under me and take me to the ground. It was time to go see someone!
I found a local Orthopedist, and had a few X-rays done. Initially, I was told I had issues with my SI joints and that is where the pain was stemming from. I had a few steroid injections done, but the pain only continued to get worse. I was sent to physical therapy and I had completed the whole prescribed regimen, but still… no help. I continued to do my exercises at home, but the pain still continued to slowly get worse and worse. I was then sent for an MRI of my spine, which is when herniations were found in my lumbar spine. I had 2 facet joint injections into those areas, but still no relief. SO, I was referred to that practice’s Pain Management Doctor to be prescribed none other than pills to help ease the pain.
My last child (another daughter) was born in August of 2017, and at this time the pain started to really grow. Shortly after her birth, I saw a local Neurosurgeon for a second opinion. I did NOT want opioids or any meds if at all possible and wanted to get to the root of the problem. The Neurosurgeon scheduled a pain stimulator implant surgery to go into my spine to interrupt the pain signals my spinal nerves were sending to my brain along with what is called an ALIF procedure (a spinal fusion that is done from the front of the body rather than the back). The day before my surgery was scheduled, I received a call from the Neurosurgeon’s office and my insurance had denied the implant because it was deemed “experimental”. I had to prove that I had tried other avenues (physical therapy, chiropractic, injections, nerve blocks and pain medications). The insurance was provided with all of the records to prove these things were completed, and they still denied the services.
So, back to the Orthopedic Pain Management Doctor I went. He immediately dropped me, since the policy for their practice is to only follow someone for pain management no longer than 6 months. They referred me to another local Pain Management Doctor.
I have been with that same pain management doctor since January of 2018. As time progressed, my spine continued to get worse and worse, until finally around 2020/2021 it got to a point that I was bedridden for at least 1 week of every month. It was found that I have quite a few other medical issues that cause already damaged discs to feel increased amounts of pain than someone who typically has this type of disc injury. Once the discs are fixed however, I will be able to start fixing and correcting the other medical problems. I have already started a chemotherapy treatment to help with one of the issues. This is the only thing holding me back.
I was referred to yet another Neurosurgeon at the University of Penn Hospital in Philadelphia for a 3rd opinion in the fall of 2021. I was scheduled for a fusion with dual disc replacements. By this time, when not bedridden, I needed to walk with a walker or cane on many days. However, again, insurance denied the surgery stating the same thing as before…I had to prove all of the things I had already done once again (same insurance company throughout this entire thing). I was already on my 2nd and 3rd rounds of physical therapy, chiropractic made it worse and I had so many injections and epidural blocks done by this point that I could probably start my own medical supply company with the items used!! We fought; the doctor fought – we did every appeal we could. I even got 4th and 5th opinions…. And it was all the same answer. I needed a fusion. However, insurance was not having it so my only other recourse was to stay on the highest dosage of opioids possible and pray it didn’t get worse.
In late 2021/ early 2022, I was offered the Reactiv-8 implant, to help build back a muscle along my spine (the multifidus muscle) that became atrophied. This was to help give my spine some stability and should have helped to reduce pain as well. However, even though it is FDA approved, insurance denied again for “experimental”. Once more, my only recourse is pain medication to “take the edge off”. However, by August of 2022 the pain meds stopped working completely.
It has been an extremely emotional ride over the years. Every time I think I can get help and get my hopes up, I keep getting let back down. My children yearn for their mom to play with them, to sit with them and spend time with them or to go to their activities with them. I yearn to be able to be with my children, to not have to skip holidays and birthdays. To miss out on them growing up. I know, I am lucky. Some kids aren’t lucky enough to have a mom and some women can’t have children to live out their dreams. I know it could be worse and many people do have it worse. I am both blessed and cursed.
It has now been about 8 months of being bedridden on a consistent basis, with less than a month in total over that time period, that I’ve been able to be out of bed or downstairs in my home. I have been on Social Security now since 2017 and can not wait to go back to work and start contributing again!
Now, my biggest dreams have changed dramatically since I was a starry eyed and hopeful little girl. I want to be able to sit for more than 30 minutes without having to lay down, stand more than 10-15 minutes without having to sit. I want to not wake up crying every morning, or be able to go to sleep at night without having to take an absurd amount of sleep aids because the pain is too intense. I want to see more than these 4 walls I stare at day in and day out. I want to get back to my kids, to my husband. To be able to get them on and off their school bus. To enjoy my family, to see my son off to start his own life, to give back to my very tired and weary husband who does EVERYTHING for me and our family (in all respects, he is like a single parent that has an adult child as well – he cooks, he cleans, he helps me shower, toilet and dress). My poor husband has not been able to return to his office since before COVID hit because he’s too busy taking care of our kids and waiting hand and foot on me. The poor man is so stressed and stretched to his limits emotionally, physically and financially. It doesn’t help that most days I’m either angry or crying because I feel so darn useless and like such a burden to my entire family, even though logically I know I can’t help it.
There is a fix though. A good one. A proven one. 16 years of doing this procedure and only a handful of patients it didn’t work for. Without the need for a fusion. No more injections. No more opioids that don’t work (and are dangerous). No more jumping through hoops every few months to get any type of relief. No cutting through muscles or bone. A laser herniation repair. I have recently had a consultation with the doctor after he reviewed my MRI’s and it is absolutely a viable solution for me. The surgery itself is a one-day procedure with NO RECOVERY TIME, unlike a fusion. I would not be able to lift and more than 40lbs for a year so I do not re-herniate the discs, and I won’t be able to fully bend for a year, but I would be pain free and able to get back to normal life, or mostly normal! I look forward to being able to feel my legs again… or not feeling like I’m backing up to a camp fire with one leg or have the feeling of cold water trickling down the other. No more locked toes and completely numb thighs and feet. I would be able to cancel my social security disability and get back to work…after all I am only 40 years old. I have a lot of time left, and a lot of time left for my family (God willing)! I’d be able to live again!
I hate asking for money or for help, but I am desperate and can’t keep living like this day in and day out. I am absolutely not the type of person that likes handouts and do everything I can before asking for help (my husband will tell you I’m stubborn and my mother will tell you I’m bullheaded)! However, I need your help if you can spare it, please! Even $1 is helpful. See, this doctor doesn’t take my insurance, so the procedure is all out of pocket and up front. Currently, he is the only doctor that does this procedure in the world, as he developed the procedure himself. My husband and I also need to travel from Pennsylvania to Florida to get this procedure done.
Thank you for reading my story and for considering a donation for my road to recovery. If you are unable to donate, please consider sharing my story. My family and I thank you from the bottom of our hearts!
UPDATE: 05/08/2023
Thank you to everyone who has donated and shared my story. I am truly humbled by everyone’s generosity! This past month has been really hard both physcially and mentally. Heading into the summer months, I am starting to get anxious about the girls being home all summer long and me being bedridden while Garret tries to work from his home office. It’s also our middle child’s 7th birthday in 2 days, and there are lots of year end things going on with school. I did manage to wobble my way last week to the movies for a school event, but as soon I I got there I started paying for it in pain. I had to come home and lay down and I have been stuck in bed ever since again. Our youngest is really struggling (in kindergarten), and school says he cries several times a day becasue she misses Mommy. My heart breaks for her. I can not wait for the day that I can REALLY be a part of their lives again, but for now it’s playing Barbies and Cabbage Patch Babies in bed with me, and of course reading, reaing, reading. Thankfully, my girls love their books, just as much as I do! We are so thankful for some really great friends, family and neighbors…. and the girls have been able to play with the neighbor kids after school almost everyday – so they are not stuck inside with me! May is always such a busy month, between our middle daughter’s birthday, my birthday (I’m forever 21!), Mother’s day and Memorial Day. We also have a HUGE neighborhood yardsale in May, but we haven’t been able to do that for several years due to the lack of time on Garret’s part and my lack of abilty to do so. Garret has slowly started to bring me items to try to sell online to help pay for this surgry as well, so we are hopeful that little by little we will be able to knock down the amount of debt we put ourselves in for me to get better! I will try to contnue to post updates on a monthly basis!
