Help for Holly to walk again
In mid August I came down with what I thought was the flu. Within 1 week I was admitted to the hospital. During that time I lost all use of my lower body. It took a great team of doctors and many many tests to finally discover I had a rare acute attack of Transverse Myelitis also know as TM. TM is categorized as a spinal cord injury and in severe cases like mine can cause paralysis. Once discovered, the doctors went to work finding the correct medications. I had to have a blood plasma wash to stop the damage from spreading. Despite all of the treatment, my legs did not return. I could wiggle my toes but did not feel them. After the doctors did all they could I was transferred to a sub acute rehabilitation center in order to build my upper body strength and try to get me to stand.
I worked hard at the rehabilitation center and did make some progress, but became ill due to improper care of my catheter. I was rushed back to the hospital and spent 3 days in ICU. I was informed that my blood was septic from a urinary infection. I fought hard and I pulled through. The set back was devastating and once the infection was out of my system it left me still unable to move my lower body or feel any body functions in addition to a new pain. This new pain is horrible spasms just above the paralyzed area. The spasms come in waves and they are unbearable at times. Because TM is so rare and after checking everything in that area it is believed I will have this pain forever.
I continue to work hard as ever at an inpatient rehab facility located in the hospital. I work every day on increasing my upper body strength, learn spinal cord injury techniques, increase my stamina and balance. I hope to one day stand and maybe even walk but the doctors can’t say 100 % if I will be able to. I hope that maybe in 2 to 3 year’s time I can walk with a walker.
To sum it all up, I have been in the hospital now since Aug 24 2015, and today is Nov 23 2015. The therapists and doctors are shooting to get me home by Dec 2 2015, however I need specialized equipment in order to discharge safely. Most of the equipment is not covered by my insurance and I will have to pay 20 % of my hospital bill. We are not sure if the special medication I am on will be covered by insurance either. Here is a list of what I must have in order for me to manage at home with my Mothers help
1. Sabina Lift machine ($4,000)
2. Special rotating tub transfer bench ($250.00)
3. A specialized wheelchair ($2000-3000)
4. Hospital bed with added bed rails
5. Other medical equipment
6. Structural modifications to my house
7. Special wheel chair transportation
8. Long term therapy.
I am sure I am leaving some things out, this is all so overwhelming and I have never reached out for help so this is not coming easy to me. I have always been the one to give to others. But I find myself in need of help.
If you can find it in your heart to help I promise I will work so hard and prove that I can still live my life despite this disease. I hope to one day use my experience to help others who suffer from similar illness. Please share my story check my page often I will update God Bless each of you in advance for anything that you do whether it be to donate or to share or to just pray for me and my mother and my Gran.
First off, I want to Thank all of you for the support you have given me over this year and change. Whether it was financially, emotionally, physically or a mix, it all has meant the world to me.
You have helped me get the expensive equipment needed, the ability to get me over 8 months of therapy, along with my medications and daily supplies that are needed and my copays for all of the doctors I still have to see.
In my online support group I hear from others how little support they have, how even the doctors are not helpful and they remind me of how blessed I am. In one week we lost a man to suicide, a 15 year old and a 2 year due to complications, a very hard week for their famlies and us in our group. They are also a blessing to have ones who understand the pain and ffustrations we feel.
I'm so glad my friend Lisa was able to upload my videos to show my progress. I have been able to walk 60 feet on the walker, so proud of myself. Of courseI spent two days in bed afterwards from pain and fatigueness.
I recently had to stop the therapy due to funds so I'm doing my own excercises at home with help from my mom, and friends who help me walk when they visit. I need two people with me when walking on the walker.
Sadly, I'm begging for additional funds so that I can continue on with my journey. I need help with my medications, daily supplies (bathroom needs), still a few outstanding bills for therapy, and if lucky enough some weights and such to continue my home excercise routine.
Thank you so much for your continued support, I love you all.
Holly wanted everyone to know that she is eternally grateful for all your support. However, instead of just telling you what she's been able to accomplish with your help, she figured she'd show you. I hope you're as excited as I am to see her progress.
Before I get to that, I just wanted you to know that this amazing woman is determined to improve with every passing day, but she still needs our help to hit the home stretch. As many of you know, Holly's also been diagnosed with Multiple Sclerosis and you can imagine how that's further complicated things. She'll be needing special body cooling equipment in order to deal with this latest diagnosis and the costs just keep mounting.
If you know Holly like I do, you'll understand that she's always hesitant to ask for help because she's usually the one helping others. Well, I'm asking on her behalf. If there's anything you can spare to help my friend get the medical care / equipment she needs to keep improving, please donate. You know she won't let it go to waste because this girl's a survivor with the heart of a true fighter. As of today she's been able to walk 90 feet with only three one-minutes breaks in the chair! That's huge. She's got this and with our help she will accomplish each and every one of her goals.
Thank you for reading and I hope you enjoy the video updates. It's good to see her smiling again. :)
The good is I was able to walk a little over two feet on the walker. Outpatient therapy did some wonders, I was almost ready to even go out to a restaurant with friends for lunch.
The bad.... I did have a controlled fall, just one. A dear friend was able to come help me get off the floor, so I didn't have to call 911. I didn't hurt myself, was just sore for a few days.
Now for the ugly...I was going to write this update earlier this week, but ended up back in the hospital on Tuesday. I ended up having an UTI, that went to bladder then both kidneys. I spent 5 days in the hospital, cam home yesterday evening with a PICC line. I have to have IV antibiotics for the next six days. Apparently my heart couldn't handle the oral antibiotics. They also pulled me out of outpatient therapy, will be doing home therapy again for awhile. Brightside, looks like I will have my same wonderful therapists. A setback, but not as big of one as it could have been.
Now onto the uglier, I received my results from the MRI, on top of the TM, I also have Multiple sclerosis. I will be starting medicine in a few weeks for this, it will be injections 3 times a week. This definitely has me scared, of course the past 8 months have been scary.
I'm so thankful for all of my support throughput this whole ordeal, whether physically, emotionally, text,email, phone, thoughts and prayers for me and financially. I would not be as far as I am without any of you.
It saddens me to have to ask for more support again, but none the less I need to. With all of the copays, paying the $742 a month for insurance, new medications, and new mobility equipment, it's becoming overwhelming again. If you have a few extra dollars to share, or share this page yet again, I would be forever grateful.
Say yes to the invites from them, do the things you want, dont be scared and don't wait for tomorrow. You just never know how quickly your known life can change.
I love you all, thank you for everything. Big Hugs
I'm also able to use the beasy board to get in and out of my car, with mom driving of course. Still can't believe its been six months since this has begun. Sometimes I'm blown away by my progress other times I think I would be farther along. Both my neurologist and inpatient rehab doctor were extremely suprised by my progress, they weren't sure I would make it this far. Of course, they reminded me that I still have a long way to go...always pushing me. I'm glad I keep suprising them and myself.
Thank you all for being on this journey with me. Hugs