Help a Sp Ed teacher keep UP with kids!
Like many people who use wheelchairs full-time, I am prone to pressure sores. Unfortunately, recurrent sores have put me on bed rest while I heal. In order to stay pressure sore free, I need something called a standing wheelchair. This will allow me to frequently be upright during the day, alleviating the pressure on sensitive areas prone to skin breakdown. Since a standing wheelchair does not fold, I will no longer be able to drive my car, necessitating the purchase of a wheelchair accessible van. A wheelchair is often not covered by private insurance, and costs approximately $25,000, and a van can cost upwards of $50,000. For a lot of people, the cost involved makes the dream of owning a wheelchair van unattainable.
I am a public school teacher, and I work with very young children with special needs. My husband also works for the same public school district. While we love our jobs, we would not be considered "well-off". Being out of work, because of pressure sores caused by my current wheelchair, means my family won't be able to make ends meet. A standing wheelchair, and an accessible van, are things I need to remain independent, and successful. Your donation will go directly to purchasing the standing wheelchair, and wheelchair accessible van. If by chance, other funding comes through for the wheelchair, the funds raised will go directly to a wheelchair accessible van.
Speaking of regaining my strength... Do you want to know what happens when you lay flat for 42 days, even if you have therapy to move your arms and legs while laying flat??? Turns out your ab muscles and back muscles take a vacation and go to Cabo without you. :) The first few days I've been out of bed have been...difficult...to say the least. I don't think my muscles have come back from their vacation yet, because I'm still looking for them! Each day is better than the day before, and I'm making pretty good progress (according to my therapists and the nurses) in recovering. I didn't expect this part of it to be so difficult...it's been not only hard physically, but hard psychologically as well.
I met with representatives of a medical company today who have experience getting standing wheelchairs covered. I currently have different health insurance than I had last year (for the next few months), so we're going to try our best to get them to cover a standing wheelchair. I'm prepared for the answer to be no, as the odds of course are not in my favor, but I'm hoping nonetheless. The paperwork should be done in about a week, and then it's just a waiting game.
Please continue to spread the word about my story... If this reaches 1,000 people, and if those 1,000 are able to donate $10, I'll have enough to cover most of the costs of the wheelchair if insurance denies the standing chair. Just think $10 can make a HUGE difference. Enough $10 donations can make the difference in my returning back to work long term, supporting my family, and continuing my life work of making the difference in the lives of children and their families. I've come too far to give up my life and my dreams.
I had my flap surgery on Friday. I was worried, as surgery tends to never go well for me, as I have difficulty with anesthesia. I have to say, this was the best surgical experience I've ever had (this was surgery #19 for me). I was able to be put under general anesthesia with no difficulty and even better, had no difficulty once I woke up from surgery. I normally am very ill afterwards for at least 12 hours. This anethesiologist was hands down, the best one I've ever had.
The surgery went "textbook perfect". Muscle and skin from my left hip/buttock was used to cover the area once all the tissue affected by the pressure sore was removed. I have a 31 cm line of sutures on my left 'cheek', and I'm quite sore, but doing well. I was transferred quickly (within 24 hours) to the rehab floor, and have begun my recovery! I have this neat bed I lay in that is a special circulating air bed...sounds like there is a vacuum on in my room all the time. :) It helps keep pressure off sensitive area of my body while I heal...and it's quite comfortable!
My next goal is to get through my rehab stay...which is not exactly set in stone time-wise. I'm prepared to stay here until sometime in June. Once I get home I will be able to devote more time and energy to getting the standing wheelchair.
Again, please keep spreading the word for me! Anything anyone can do to help is wonderful. I'm blessed to have such supportive friends and family who are always willing to help. Thanks so much for your time and efforts to keeping my project alive and going! I'm looking forward to taking my life back and getting back to 'normal'!
In January I had to take an official leave of absence from work because of the pressure sore I'm still dealing with. That means not only no paycheck but no benefits as well, and we had to get health insurance through my husband. Let's just say I miss my old health insurance...it was stellar! This insurance is costing us an enormous amount of money, and they are covering about half of what the old insurance covered, so our out of pocket has gone up tremendously. We are currently spending about $1100/month between premiums and out of pocket expenses for medical right now, and that doesn't include what we will need to pay for my surgery, and we're doing this without my income. Things are so tight they are squeaking. Actually, it quit squeaking because it got too tight to squeak!
Speaking of surgery... tomorrow I will have what is known as a "flap" surgery for the pressure sore. Hopefully this will take care of the problem for good, but it's not going to be an easy or simple procedure or recovery. The hard part is beginning...
For the surgery to happen, the wound must initially be made larger (go figure...sounds counter intuitive, right?). Muscle will be taken from another part of my body and be 'flapped' over the wound, and the wound closed. I will be in a rehab hospital for 6 to 8 weeks post surgery in order to heal. Why rehab??? Because I need to be able to stay OFF the wound site completely and totally for the first 6 to 8 weeks. I will be in bed, on my stomach or side, the entire hospital stay. I will not be allowed to sit in bed or get out of bed for any reason at all for the entire stay (not for bathing or personal needs either). It's a pretty brutal recovery, but being forced to stay down increases the success rate of the surgery. If pressure is applied to the wound while it is healing, the new skin and muscle will die and slough off, and I'll be left with a bigger wound than I had to begin with, in addition to the 2nd wound from the donor site. It's critical that I remain flat so my body can heal.
I am still planning on getting the standing wheelchair...life has just gotten in the way the past couple months. I need help more than ever now. The original plan was to take out a loan for the remaining cost of the chair (about $14,000), but we can't do that right now, since I'm not working and we don't have the money at this point to make a loan payment. I plan on going to Voc Rehab after I get out of rehab to see if there is anything they can do. I was supposed to meet with them in December, but I was too sick to go, and since January I've been on even more restrictive bed rest (23 hours a day in bed), and haven't wanted to jeopardize healing by being up to go to any appointments that weren't strictly essential. Please share this with people and continue to spread the word. Anything anyone can give is truly appreciated. It's hard feeling trapped between a rock and a hard place... I can't go back to work unless I can get the standing wheelchair, but I have to go back to work to afford the standing wheelchair. It's an impossible situation. Anything helps. :)
The week of Thanksgiving, I had a wound vac put on my pressure sore. It's pretty much the only treatment we hadn't tried yet. Given the location of the pressure sore (the seat bones on the left side), it's tricky to get put on and keep it on, and while it's helping, it's been its own source of frustration.
The first week of December did not begin well...I was feeling pretty awful and I developed a fever. The first day, I and my home health nurse thought maybe I was coming down with something. The 2nd day, the nurse said we needed to keep a close eye on it. The 3rd day the nurse and my doctor encouraged me to go to the emergency room because having a fever greater than 101 when you have a pressure sore is not a good combination.
I went to the emergency room (grumbling...I didn't want to go!), and I was actually presenting signs of sepsis. Apparently showing signs of sepsis will bump you to the front of the line and they see you pretty much immediately. One of my worries is that they wouldn't think it was a big deal (because I didn't think it was), and I would sit and wait hours for a bed and to be seen. Nope. I waited about 20 minutes at the most. They drew blood, started IVs and took samples to send to the lab, and then told me that since I was showing signs of sepsis, I was being admitted. Talk about frustrated...I wanted a dose of IV antibiotics, then a prescription for oral antibiotics so I could go home! Until they knew what kinds of bacteria I was growing, they wouldn't let me go home. I was inpatient for 4 (long) days.
On the 4th day we finally got some results...I was culturing at least 3 different bacteria, both gram positive rods and gram negative chains. My bone scan was negative for infection in the bone, but one of the doctors wanted to play it conservatively and treat me for it anyway. I got to go home with a PICC line in my arm and IV antibiotics for 6 weeks. I got SO VERY SICK from the antibiotics. I was on them for 3.5 weeks and then my wound care doctor had them discontinued because there was no evidence there was infection in the bone (remember...negative bone test), and he felt the risks outweighed the benefits at that point. It took almost 2 weeks for my system to return to normal from the side effects of the antibiotics (the infectious disease doctor likened the antibiotics I was on to a nuclear bomb for the body...really, really strong stuff).
Now...as for the wound itself. Bad news. It's gotten worse during the time I went back to work between October and January. What we thought was the bottom of the wound was actually NOT the bottom of the wound. It was more like a membrane...and when it got thin enough, it broke through and we discovered an area about the size of a ping pong ball that was an empty cavernous space (there should be muscle in that spot). Hence why we started with the wound vac. Apparently working has me up too much to be able to heal, and things were getting much worse, even though we didn't know it until November.
I've had to make the difficult decision to take a leave of absence from my job. This is different from FML...I've already used all my FML. I'm actually no longer considered an active employee and I will not be getting paid or have benefits during this time. We've had to take out health insurance through my husband, which is proving to be very expensive, and have half the income to pay for it. Things are going to be squeaky tight until I'm healed and can return back to work. No one knows how long that will be... it could be 2 or 3 months, or it could be 6 to 8 more months. We just don't know. I'm planning on meeting with a few agencies soon to explore some options. Unfortunately, it's hard to do that though, because I'm supposed to be on super strict bed rest (and meeting with people would require me to be up). I'm supposed to lay on my right side or my stomach all the time, only getting out of bed for necessities (restroom and getting something to eat). I even eat in bed.
Please try to spread the word...this page is still active, and help is still needed now more than ever, since we've lost my income. At this point, we realistically can't apply the fundraised money to a standing wheelchair and then just take out a loan to finance the rest...so I need to figure out how to raise even more money. I appreciate everyone's efforts, thoughts, prayers, and other assistance we've been given over the past several months. It's helped more than you can even know.
Your a great sis!!!
I am also a teacher, and I also have spina bifida. I will be donating as soon as I am unable! The kids and parents in your school are lucky to have you and I know the feeling of wanting to do anything to get back to "your kids".
Your a success story! :)
I am trying to figure out how to share this on my page! I will definitely pray that the Insurance company finds this chair medically necessary! PRAYING!!!
Girl, you made me tear up! You are such a fantastic person, keep on working and you will get there!