r/spinabifida

Is it true that people with Spina Bifida fail to find physical intimacy or at the very least its rare/difficult find? I can imagine it’s easier to find it with someone who also has Spina Bifida. Basically im asking do able bodied women find it a turn off in with a male partner. All women deserve to have it with their partner but what if the partner is paralyzed? Wouldn’t they stay away from a man like that? I’ve never been with a woman intimately. Not once have I even had so much as a kiss. I feel like I’m being punished for something I can’t control. I can’t stress enough how much this means to me. Am I doing something wrong?

I believe I have mentioned that my shunt revision in April has failed. I am scheduled for another revision this coming Thursday.

I imagine none of us enjoy this part of our lived experience. Personally, I am resigned to the conclusion my reaction to it is probably an undiagnosed traumatic response.

So this is why I ask, what are some pre-op rituals you do to keep your mood, or positivity up?

I have the Myelomeningocele version of Spade Bida. Here lately I’ve been having more tired and overall unhealthy feeling days than I have healthy and energetic days. Is anyone else familiar with this? What do you do about it?

My last post, I talked about sharing resources, information, and other things that could help the Spina Bifida community.
A few people mentioned that they don’t always share because sometimes an event or resource is specific to their city or state. Someone else said it simply never crossed their mind to share certain information because they assumed everyone already knew about it. Another person mentioned that they had tried sharing things in the past, only to have people quickly shut it down because it didn’t apply to them personally.
And honestly, hearing those responses made me think even more about how important sharing can be.
If something is happening in your city or state, share it. You never know who might be there, who might be planning to move there, or who might know someone who could benefit from it.
If you think everyone already knows about a resource, share it anyway. Maybe someone who is younger in our community has never heard of it. Maybe someone is newly diagnosed. Maybe a parent is desperately looking for exactly that information.
And if something doesn’t personally apply to you, that doesn’t mean it won’t matter to someone else.
So I want to encourage everyone to do something simple:
Comment below with something you know.
Maybe you know of a place that sells or modifies vehicles with hand controls. Maybe you know about an upcoming meetup. Maybe you know of an organization, program, scholarship, support group, adaptive activity, or resource that has helped you or someone you know.
Whatever it is, share it.
You never know who might see it.
Building a stronger Spina Bifida community doesn’t always require something huge. Sometimes it starts with something as simple as passing along what we know.
So let’s share what we know. You never know who might need it.

https://www.sacvans.com <—— vans that have hand controls

https://www.spinabifidaassociation.org/chapter/spina-bifida-association-of-california/ <—— contact info for the California chapter of the SBA

I’m a 31 y/o female. I’ve always suffered with back pain but work as a hairstylist and had been in a car accident at the age of 20 so I thought this was just normal. I went to an osteopath that a friend told me about a few months ago, as I had always had a pretty dramatic lateral pelvic tilt and wanted to fix it. I did a few session with him and then in August of this year I started feeling severe pain and heaviness in my leg and pins and needles at the bottom of my foot. This went on for weeks but again, I work 10 hour days at the salon 5 days a week often times with no lunch and no breaks so I thought this was normal.

One night I was having a couple drinks with my friends and one of them noticed I had vericose veins on my legs. I did my research and google said these can cause leg heaviness so that’s what I thought was going on, but my friends started freaking me out by saying things like “you should go see your doctor, what if you have a blood clot” so I went to a walk in clinic the next day. The doctor immediately did a mobility test on my leg and concluded that the problem was actually coming from my spine and sent me for an x ray. My results can in with finding of possible rare spina bifida occulta L5 S1. I’m not sure what the rare part means but it was in the x ray report. I’m now waiting for a CT scan and although I’m on the cancellation list my actual appointment is not until December.

My doctor prescribed me lyrica but im too scared to take it with my career so id rather just live with the pain. My entire life ive been going to doctors and hospitals for chronic UTIs and level 10 pain and it’s always just been dismissed as “you’re just backed up, you’re fine, you’re too young for anything to be wrong”.

Does anybody have any similar similar symptoms or stories? I’m so scared of hurting myself

Growing up I walked with my feet inwards
Chronic UTIs and got sent home all the time for peeing my pants in school
Chronic severe constipation my whole life where I won’t have a bowel movement for multiple weeks
Lateral pelvic tilt
Latex allergy
Proctitis diagnosis at 26
Black starry vision when getting up or sitting down too quickly