Disabled Parenting Project Message Boards › New to DPP, Greetings.!
April 24, 2016 at 2:23 pm #668
Hello I am new to this site I’m quite happy to have discovered it. I am now a single parent of 3 young men ages 24, 27, and 14. I acquired degenerative disc disease at the age of 23 it progressed rapidly in my thirties. I’ve had multiple surgeries on my spine including a failed lumbra fusion, I also developed psoriatic arthritis which was discovered after I my spine was fused. MsMonkeyFeet refers to the deformities PA is causing in my feet(it’s also attacking every joint in my body). I live in constant poorly managed pain. This is due to allergies and not my pain doctor.
I wish I had a site or resource like this many years ago. My disabilities and pain have impacted every aspect of my life but especially my parenting. It’s amazing how some other parents react to a disabled parent. The isolation can be heartbreaking but I don’t think anything hurts me as much seeimg how my disabilities have impacted my children’s lives. From not being able to drive them anywhere to not having money for a senior trip it seems I’m always disappointing them.
My youngest son was born with a congenital heart defect just before my back problems became acute, he had 3 open heart surgeries before he was 4. Luckily he’s doing well and knock on wood hasn’t had any major issues, he will always struggle with stamina but is otherwise healthy. Eventually he may need a new heart as he only has one ventricle doing all the work for his but we hope that is years from now. My 17 year old struggles with attention deficit and cyclothymic disorder ( a cognitive disorder similar to bipolar but with Rapid Cycling of moods). I know his symptoms started before I became disabled but I can’t help wondering if it has become worse because of me. You never think of the challenges until they become challenges like when your son is caught out past curfew and you can’t drive to go get him; the only people you have to count on are your elderly parents.
This did not go where I thought it would go. But I’ve always loved writing and on a positive note I have returned to school, I’m doing an online program to finish my degree and brush up on my writing skills. I hope to finish a book I started. Perhaps thread coupd be an introductory thread for new people. I don’t how that works. I certainly hope that many find this site and it evolved into something wonderful for parents and prospective parents with disabilities.
April 27, 2016 at 6:45 am #673
- This topic was modified 2 years, 12 months ago by MsMonkeyFeet.
Thanks for joining the DPP and sharing your story!April 26, 2018 at 3:06 pm #1513
My name is Melissa, and like the above story, it’s scarily similar to my own. I have had multiple surgeries on my spinal column the issues being the L4-L5 and L5 S1, It even cost me a job as a pharmacy tech, I even had an associates of applied sciences and am a part of Phi Theta Kappa for life, and THOUGHT that the surgeries would fix it. This wasn’t the fault of the company I worked for, no they were AMAZING to work for, it’s just…..I couldn’t do my job anymore after the L5-S1 fusion, it FAILED. The fusion didn’t heal right, it’s called a non union, BUT while the surgeon was in there, he found that one of my sensory nerves had been bent and even had an imprint of my BONE on it it was SO compacted, AND scar tissue wrapped around it strangling it. NOW, the metal cage is holding, and my husband and I decided that since it is holding well going in for a refusion with only a 50% chance to fix the fusion but be unable to help the pain……I chose to start our baby process (in vitro) instead. We get implanted on the 14th or 16th of next month! We are so excited! But I also have to see maternal fetal medicine while pregnant they ALL know what’s going on and since the surgeon said it was ok to proceed with the pregnancy, AND yes all doctors are in touch with the other ones, I ensure that. We are, but I am scared because I already am using assistive devices to walk, a rolling walker with a chair when I go to the store or at the very LEAST I use crutches but they aren’t as stable for me I fall down or stumble I use a wheelchair at school I went back to school after I couldn’t work due to not being able to perform the required job functions, now I am a Biology major chemistry and neuroscience minor with a focus on studying Autistic Spectrum Disorder as I have that too only I am a high functioning ASD/ADHD, in a way that helps me because it makes me stubborn 😉 Interesting factoid a LOT of ASDs go into a STEM field. A lot of computer science, others are bio related like me it’s SO awesome.(https://www.youtube.com/watch?v=bBD_LTPjYVQ) and It’s also a blessing too because I was told even when I was studying to be a technician that I SHOULD go into research BY AN INSTRUCTOR. I didn’t have a lot of confidence, but now that I am studying it I LOOOOOVE it!so where one door closes…….. another opens. Besides I met my husband at the community college where I got my associates. He was retraining after layoff. He is SUCH an amazing man. I even get to be a part of the UW symposium this year based on my research how AWESOME is that????!!!!! ok yeah geek moment ahem now back to the scary part….what if I fall while holding the baby? What if my leg gives out or I can’t sense where I am distributing my weight which causes me to stumble and I fall into the wall while holding the baby? I cannot feel how I am putting my weight on my right leg anymore it’s dead from the knee down to my ankle, and above the knee is diminished sensation all the way up to my middle back. Now the back sensation is on both sides but only my right leg and buttock are affected the L4-S1 nerves. It has affected my walking because I can no longer walk for longer than short distances without a device( around the house but I still stumble a bit but I am considered such a bad fall risk but doctors that I must use an assistive device while out for any length of time I HATE it though, so I push it a lot I will admit. I am walking around a bit trying to force it to get better, but I was told……it wouldn’t. Sorry if this is lengthy but anyway hi?
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