Help Wheelie Mom (Janice) Get Her Wheelchair

Hi I am Janice.

I suffered an injury that left me with a broken back. Evidently, I had an infection that was hiding in my spine from a prior surgery and it affected and weakened my bones and when I fell sleepwalking, I broke my back. I woke up the next day and couldn’t get out of bed, so I had to go by ambulance to the ER where I was told I had multiple fractures up my spine, and I was scheduled for emergency surgery the next morning.

The surgeon put a cage in my lower spine and fused it as well, I spent 19 days laying in that hospital bed unable to get out of it until I was sent to a rehabilitation center, that was really a nursing home, and I cried for 2 days because I was by far the youngest patient they had in there. There physical therapy was a joke. I would go to the PT room for 30-45 minutes a day and squeeze a ball between my knees, then be rolled in front of a bicycle machine for my arms. Then I would do a leg bicycle and use a therapy band wrapped around my knees. They would get me up out of the wheelchair while I was wearing a hard back brace that looked like a storm trooper outfit. I would walk with a lot of assistance between the walking bars once down once back then be put back in my wheelchair and put back in bed. I could not get up out of bed by myself for what felt like an eternity. I was mortified because I had to have help to use the restroom, and at night it was all male nurses.

I was there for almost a month when I just couldn’t take being there anymore, I was finally able to walk short distances with a wheeled walker because I couldn’t use a walker you had to lift, and still can’t because it’s too heavy. I had a nurse and home healthcare, and a physical therapist come out to the house. I worked my tush off to be able to get to the point of being able to walk with that stupid walker. I hate it because I fell with it more than once.

I ended up back at the hospital a few months after my surgery I woke up unable to move my legs and I had soiled myself, and that just wasn’t right. I went to the local hospital and I was told I would need another surgery and that it was too complicated for the Dr. to do it locally and I was going to be transferred to the University of Florida’s Shand’s’ Hospital, over 2 hours away from home. So far away from home I was going to a hospital I had never been to, alone.

I was taken by ambulance to Shand’s and saw the best Neurosurgeon in the area, and he scheduled me for surgery to place rods in my lower spine that came up higher than what was done in the last surgery, and to remove the cage, and fix the failed fusion. The surgery took 8 hours. It was brutal. I was in so much pain I wanted to die. I cried for 3-4 days because the pain was just too much, and I was maxed out on what they could give me for pain because my blood pressure kept dropping and what was supposed to be just an overnight stay in the ICU became a weeklong stay.

My body was so traumatized and weak from the surgery that I was watched closely for the entire week. My family could only stay a few days because the hotel prices are so expensive, so I was on my own. I was lonely, depressed, and in so much pain I can’t believe I lived through it all. I started showing signs of PTSD from all the trauma and pain that was caused from the surgeries. I am fearful of doctors and hospitals. I have nightmares of the surgeries and little did I know I would have another one to come. I had never been away from my family and it was so hard to try to keep it together mentally, my family is my rock , they are so wonderful and without them I wouldn’t be here.

I spent weeks at UF, then was transferred back to a Rehabilitation center near my home, by stretcher again.

This time I went to a different place this time. It was a batter place; it was a private hospital that was not any part of a nursing home. I had to go to 3 hours of physical therapy a day as it was mandatory, and if you didn’t do it you were transferred too somewhere else. I was very hopeful because they had me up and walking with a walker in a few days, but I got transferred out.

I spiked a fever of 103 and I told them it was no big deal because it happens sometimes with me, I think it is part of my Lupus because I never have it for more than a few hours, all I need is a dose of Tylenol and it goes away. They made me go back to the hospital in Gainesville another transfer by stretcher 2 hours away to their ER, they wouldn’t let me go to the local ER I was told since I had just had surgery, I had to go back to the hospital I had come from. These 2-hour drives were killing me.

I went to the ER in Gainesville, Thankfully they were expecting me, so I didn’t have a long wait to get in back but let me tell you that place is a zoo. I was placed in a room and had lots of blood tests done, and X-Rays to see if they could see any infection in my spine, and as normal they found nothing, 2 Tylenol and I was fine. Now to get back to the Rehab Center. Well, they transferred me up but didn’t want to transfer me back, so I ended up spending 14 hours in the ER in Gainesville as the Dr. tried to get me transportation for me and a place for me to go. I was like I just came from a place I have a spot, well I didn’t now. Because I ran a fever and they didn’t know why and they wouldn’t believe me that it is normal for me they refused to let me back in, so I ended up back at the old Nursing Home Rehab place.

Because it was taking so long to arrange a ride back to the Rehab center I got moved from a room in the ER to a spot in the hallway, yet they let a girl they had released stay in a room because she refused to leave even though there was nothing wrong with her physically. Ashe did have some mental issues, but because she kept demanding more tests and refused to leave, she got to stay in a room which was right across from my hallway space that had no privacy or tv or nurses’ button, so I was basically forgotten about for around 10 hours. They should have put her in the hallway because between the pain I was in from my surgery and all the noise and the PTSD I just laid there in fear shaking. I couldn’t wait for my ride to get there so I could get back to the Rehab Center, and Center.

Finally, my ride showed up around 1 a.m. I was tired of laying in that hallway at the ER, and I saw things I had never seen before. College kids coming in so drunk their friends had used markers to draw pictures of genitals all over these drunk kids. These kids that suddenly started coming in were so drunk they were falling out of their stretchers, one had to be intubated, they were vomiting on the floors, it was horrible to see so I hid under my blanket.

I was going back to the Nursing Home/ Rehab place, I was so upset. Don’t get me wrong the nurses and techs that work at the Nursing/Rehab Center were nice, but it is hard to be in with patients who were so much older than me and they have not a thing in common with me. And many of them didn’t even know where they were poor things, Most of them didn’t even speak, and when they did you couldn’t understand them most of the time.

I got a new PT person we will call her T. T was great I spoke to her about how I wasn’t being challenged enough so she stepped up my Therapy and we got me up walking with a wheeled walker, and I had hope that I would eventually transfer to a cane then be able to walk upright on my own. When I went home after my stay, I was able to walk around my house with the walker and I was standing up straighter, but I had to literally push myself into an upright position because my back was too weak to hold me up straight. I thought PT would help, and it did a little bit, but it was so boring. The PT girl the Ins. Co. sent out didn’t know anything so after a few visits I fired her and started doing my own PT. I was determined to walk. So, I felt because I had been through PT before and I was also a fitness instructor when I was in my 20’s I should be able to handle it myself.

I was doing good too, I only had to use the walker at home, and if I went out I had to use a wheelchair, and that was bad because the chair the Ins. Co. brought me was so heavy the only people who could lift it was my kids, so if I had to go out I had to have one of them go with me, and I didn’t feel good about this because my husband can’t lift it because he has a severe neck and back injury from getting hit by a truck, and he couldn’t geta settlement from the accident because the man had crappy Ins. and died a few weeks later from natural causes. Now my husband is in treatment for his neck and back, and is also disabled, but at least he can walk, or I’d starve because I can’t reach the cabinets.

Since my 1st surgery the only places I was going was to the Dr’s offices, or hospital, and this was before Covid hit. I was tired of being a hermit, so My wonderful husband put a lighter wheelchair in our emergency credit card. He still couldn’t lift it on his own even if we stripped it down and took the rear wheels off, the arm rests, and the leg rests. Then together him and I could get it into my car, and it had a fold down back so I didn’t have to have the rear seats folded down like I did with the one the Ins. gave me, which was a problem because the whole family could never go anywhere together, not that I was going anywhere, but I wanted to.

I was regretting giving that I had given away the Jazzy scooter I had from my mother that she gave to me long before I got hurt. I gave it to a neighbor who had an 89-year-old mother who couldn’t roll herself around in a wheelchair, because of weakness. I figured I wasn’t using it and at that point I was healthy and riding dirt bikes and mowing my ½ acre lot by myself (on a riding mower). I was doing home repairs like when we discovered our laundry room had no dryer vent because the former owners did their laundry in the garage, and they had freezers in the laundry room. So, we called about having a vent put in and it was going to be a disaster they were going to have to cut the wall all the way up from floor to ceiling and then drill a big hold through the header beam and up through the roof. Wow. Total price on that $2,500.00, We couldn’t afford that so since I have so many tools, I am like a Home Depot, so I decided to vent it myself. There was a closet right next to the dryer, so I cut holes large enough for the duct to go through the closet across the bottom of the floor of the closet and pop out into the garage. Then I attached a water lint catcher to it, and it works fine. That was how I was if we had a problem and I would fix it.

I have built closets, and drywalled them so well you couldn’t tell it was an add on. I built a wall and insulated it and installed a door in our 1st house in our extra deep garage to make a laundry room. I even took all the tile and drywall out of one of the shower areas in one of the houses we moved into to replace all the moldy drywall and update the bathroom with green board in the shower area, nice tile, repainted the room, put in a new sink and cupboard, and hung a nice shelf on the wall. I cut all the tile myself, I have even tiled a kitchen and a family room, that was just me I loved to do these kinds of projects. But that was then, and now I can just remember those days because I can’t do those things anymore. But back before I still had hope that with lots of PT and hard work I would pull through and get back to normal.

While doing my PT and trying to strengthen my core and back we noticed I was starting to get bent more forward again. When I would walk with my walker, I was looking at the ground and I was having pain above where my rods ended so I thought I should get it checked out. So, we took 2 days to go to Gainesville. The ride was always hard on me so we would get a hotel the night before the appointment. This was getting expensive. How I wish they were closer. But you do what you must do.

I went to my appointment and had regular X-Rays done, as well as Scoliosis ones, And an MRI. Fun day let me tell you. So, the tests results came back I had problems above my fusion and, my rods needed to be extended, and the Dr. told me that that should get me standing up straight again. 3rd time is a charm right, isn’t that what they say? So yes, I was signed up for surgery to take place in 2 weeks. Those were a hard 2 weeks, I would have nightmares of my past surgeries, and I would start to freak out during the day and get so panicked that I almost cancelled, but my husband and kids helped me keep it together.

Surgery day finally came, and little did I know it was going to be a terrible day from the start. We get there sign in and were told they might not be able to do the surgery today because they had lost part of my blood work. They instantly sent me to the lab, and we were trying to play beat the clock. If they could get the results done in time my surgery would happen, if not it would be rescheduled. So, we went to the waiting area found some sofas and I fell asleep because I couldn’t take the stress. Two hours later I was being taken back to Pre-Op. Now all we had to do was get me changed and put and IV in, no problem right. Ha ha ha wrong.

There was a problem getting an IV site on me. Because of all the IV’s I had had over my lifetime from when I was sick, and when I was on IV’s for Lupus that ruined all my veins no one could get an IV going. Nurse after nurse came in and each poked me 4 times then called for another nurse. I was so full of needle holes it was ridiculous, and I mean this went on for over an hour.

Finally it was my time to go into the operating room, but I still didn’t have an IV, so the Dr. got irritated and had them bring me in the OR with no IV totally awake and seeing everything in the room, like the head clamp my skull would be fastened into with screws, trays of instruments, all kinds of foreign things that scared me and put me into fight or flight and I swear I almost jumped up and ran out of there. If it hadn’t been for this one nurse who could see I was in severe distress and came over to calm me I would have jumped off the table.

So, I got my IV line in the operating room. They had the sonogram machine there and tried for a central line in my neck, but the vein or artery collapsed. I was being poked in multiple places at the same time and I told the Dr. you people should really give patients laughing gas when you are doing this too them. It wouldn’t make it so bad then. He agreed. They finally got a line in somewhere, Thank God. Then it was off to dreamland for me.

My family had been told this surgery should be about 4-5 hours. That’s no 8 hours but it is still a long time. Well, the surgery went on well past 5 hours then 6,7,8,8 ½ hours then they were done. I had coded on the table, and I remember it. I remember being in an all-white space where I couldn’t see any edges or corners, I was by myself and I was talking to myself, I remember saying “If this is like it is what it is like to be dead it isn’t so bad.” I didn’t feel any fear I just felt peace, but I remembered my family and kids and I knew I had to be there for them, so they were able to bring me back.

So again, I was in the ICU, but it was more serious this time. I was not doing well at all. Again, the pain was unbearable, and I was in tears and begging for more pain relief, but they wouldn’t give me any more medicine, so I begged for a medically induced coma, again they said no. it was torture, and I felt like I was lying on a pedestal under a light, it was weird. They had a nurse at time 2 in my room 24/7. I was very unwell, and I developed a bruise on my chest where someone had put their hands to do chest compressions. I and l had a few sore ribs on one side, but I was alive. When my son saw me, he lost his mind at how bad I looked. He was a teenager too, so it wasn’t like he was a little boy, and he had seen me go through many surgeries before. He is on the Spectrum for Autism but is extremely high functioning because I worked very diligently with him to make sure he would be able to function in life like everyone else. My daughter who was also a teen wasn’t there this time she had to stay home not only to take care of the cat, but she had to work. She also suffers from a mental illness which gives her very severe Depression and lack of faith in herself, but we are working on that.

So, I spent over a week in the ICU, again we were told just overnight. Ha right. I recovered slowly and on my last 2 days in the ICU they were able to get me out of bed and I was standing straight. I think I was 5ft10in. again. I felt so tall, and even with all the pain and weakness I really thought I was fixed this time. Life would return to normal and I would go back to doing all the things I did before, but that just wasn’t in the cards for me.

I ended up transferred to the private hospital, which is so much nicer than the other rehab place. I had a fun roommate who was 80 and had fractured her neck and had surgery and was there to recover as well. We got along great and we both hated PT and would end up in PT together and sometimes be able to work on the same exercises together. They also had a patient’s activity room to go watch TV on a big screen or watch a movie that they had in their collection, and they had some crafts to do so I did a painting for my roommate, which she loved.

I was near home so my family could visit often, and even go to PT with me if they wanted. I did my 3 hours a day of physical therapy, but I was a bit disappointed that they wouldn’t work with me in the kitchen area to help me learn to do home skills with my injury. I was up walking with a walker, and eventually got me to using a cane for short walks. I could walk, but not far.

After weeks and weeks, I was released to go home. All I had to do was prove I could get in and out of the little car like thing they had there and prove I could walk the length of one of their halls. I finally got there and got to go home with home healthcare because I had a PICC line for antibiotics that I had to do 4 times a day, and home PT. I worked hard and my husband even got me a treadmill to give me a safe place to walk where I couldn’t fall once I was strapped up.

As well as I was doing I had so much faith in going back to a normal lifestyle, but I noticed over time I started leaning forward again and couldn’t reach things above the bottom shelf in the cabinets or reach above my head to do anything. I even noticed I couldn’t paint at my easel and reach up to paint the top, and just sitting and trying to reach in front of me to paint at any level started to be very painful, and painting was one of my biggest hobbies. I am heart broken that I can’t paint like I could. Art has always been a big part of my life so it hurts to know it is one more thing I can’t do.

So after a few months of being home walking with a walker and starting to get bent over further and further, then noticing my legs didn’t always do what they were told, and I had a pretty bad fall I ended back at the surgeons office again. He did more tests, and I have nerve damage, which I kind of figured because of the numbness I have, and the fact that I can’t move around when I am in bed. He told me about the nerve damage and scar tissue causing problems, and that my spine is twisted up at the top a bit and I now have Scoliosis which I never had before. My tendons in my thigh area have shortened up which makes it harder to stand straight, and my core and back muscles can no longer support me for only a truly short time.

 I am mortified because I have also developed pressure sores from not only sleeping in the same position all night, but from sitting in a wheelchair that isn’t fitted to me. The Dr's are recommending debriment surgery to dig out the hard tissue but I honestly don't think I can handle that. I feel so ashamed because I have always gotten over everything, but this I haven't been able to overcome, and the last thing I want is to be a burden to my family anymore than I have been. I have to take one of my kids with me if I go out so there is someone there to get the wheelchair out of the back of my car because I can't lift my current chair like I would be able to lift the new chair.

I wish they had taught me how to live in a wheelchair at the Therapy Places. I am still trying to figure things out. My condition is progressive, and even though I can stand to transfer when I pull myself up on something I know a day will come when I can't even do that. Like I have lost the ability to tie my own shoes, I can't bend far enough to reach, and the pain is unbearable also it is embarrassing to ask someone to tie my shoes so I leave them all loose enough to slip on. When I get frustrated, which is a lot I go hide in my bathroom and cry. Seems I am spending a lot of time in there. 

I have been fighting for such a long time with my Ins. to get the chair I need. I also need a Smart Drive unit for the chair because if I am propelling myself for too long it makes my shoulders and back hurt really bad. But that is 5000$ and I know my Ins. Isn't going to help pay for that, as they already said no. So because times are hard for all of us I am only asking for just enough to get the wheelchair. I have saved up some money and if I can raise 1 thousand dollars then I will have enough to get my chair, And if a miracle happens and I get a total of 6 thousand then I could get the drive unit that I need as well, but I understand times are hard, I lost my business because of my injury I can't work and we live off my husbands disability so I do understand how hard times are so if you can help in any way I Thank You and I appreciate it so much.

I have faith that this will happen.  I went from I was going to have to pay 6 thousand dollars to now only needing 1 thousand for the chair.  As soon as I have the funds and pay the wheelchair manufacturer they will start making my chair.  One Day I hope to raise the 5k for the Smart Drive Unit to help me get around, My arms and back sure do get hurting after an outing, but first I need the chair and I have faith that getting the Smart Drive unit will work out too. I believe I was brought back to life for a reason and I may not know what it is yet, but I plan on starting a wheelchair support group in my area when the Pandemic is over.

Luckily I found a wonderful group of people on Reddit who have been so wonderful to me and always cheer me up, and the Angel that runs the group has been so wonderful to me as well. They have been my support system, and I found them by accident when I was really low. Thanks to them for being so positive to me and lifting me up. I'd like to say Thank You to them.

I thank you all for reading this far. I Thank you all and pray you all stay well. I have faith this will work because right now I live on faith. Somehow things have always worked out so I have faith this will too. Rather you can donate or not Thank You for reading my story.  I hope my story continues a long time, and that I can understand what ever lesson that I am supposed to learn in this life, and that one day I can pay it forward.

Bless you all, Stay Well.

Janice.