Living With A Disability

I'm 33, married, with a small demon-like pomeranian named Sutton Pawster. SEND HELP! Up until I was 9 or 10, I had lived a pretty normal life. But then I started waking up with massive nosebleeds that would soak my pillow. Countless doctors later, my pediatrician suggested I see a local Neurosurgeon team of two brothers. He had a suspicion I had Hydrocephalus.
Hydrocephalus (water on the brain) is a build up of spinal flood with basically nowhere to drain properly. As it builds it presses against the skull and puts pressure on your brain. That was the simple cause of my nosebleeds.
Once they knew what it was they treated it with surgery. They put in a shunt(a tube connected to a pressure valve that artificially drains for you) and now my life would be forever changed. A few surgeries after fixed simple issues as my body adjusted to the intruder.
But I did pretty well until I was in my 20's. My shunt began to have a small conflict in my stomach, where the catheter tip was placed. So, from then on, I've been getting cut open to fix it every 6 months or so since I was 24-25.
Anyone else deal with a disability out there?

 

I don't have a disability but I have an uncle who has. He has been affected by polio since he was a kid. Now, he has a kidney disease and has to carry around a catheter. My uncle might be a disabled person but he is the most hardworking man I know. His life is not easy but he never gave up. He lives better than those people who have no disabilities. He works hard and can do things that people without a disability cannot do.

I believe that people with disability are lucky. Why? Because these people realize the importance of life and do not waste it. They are strong people and never gives up. Their willpower is very strong. These peoples' adaptation ability is good. They adapt to the circumstance and continue moving forward. My uncle is a great man. You might be disabled but you have reached today, be proud of yourself and don't give up. Treasure the life that you have been given.

 

When I was 18, I was diagnosed with Fibromyalgia. That was 20 years ago and almost no one would believe or listen to me about my symptoms. Doctor after doctor I was shuffled around and time after time I was told I was crazy even with a medical diagnoses to back me up. In 2012, one doctor finally began to listen to me and sent me for a full battery of tests. I came back with the same diagnoses from 3 doctors. You would think with all the advancements in the medical field over 20 years, things would be better or easier. That's not the case. There still is no definitive cause or cure. After trying almost 50 different medications and 8 years of physical therapies, only one thing has ever helped me with the chronic pain and that was a prescription pain reliever and now because of the opioid crisis in this country, no doctors will prescribe me any. I have never had signs of addiction of withdrawal. I would hope that would count for something for me and countless other people in my situation but sadly it doesn't.

If anyone knows of anything that may help, please let me know.

 

Hi Chaztastic, sorry to hear of your trouble. I was born a spinabifida, but am very fortunate, and was able to walk as a child and tell when I had to go to the bathroom. I was also lucky in that I wasn't either a suffering from hydrocephalus. When I was forty, things had deteriorated enough, that they tried to un-tether my spinal-cord from extraneous tissue from the original defect. The surgery leaked cerebral fluid for about a year, which meant a horrible headache for about a year too. The headaches for the low pressure were horrible.

Might I ask if you too, suffered from spinabifida, it's common with hydrocephalus?

Anyway, if you're having neuro problems take care of yourself. Don't abuse drugs or alchohol to any great extent, as nerves get worse with age.

Good Luck.