Can you imagine spending one day per week at the hospital? It’s not necessary for every individual’s schedule but for those who have a health problem – we have to bare this time spent. I’ve bounced around from specialist to specialist to learn more about my disease, sacral agenesis. Holy cow, many of you probably didn’t even notice something wrong, right? I love my friends and family who act like nothing is wrong – you are the people that I need in my life.
Doctors Do The Research I schedule with doctors who have no idea. I’m that much of unique individual? Come on, stop playing. This is rare but we have come along way with advancements in medicine.
I get the luxury of having to repeat what my disease is EVERY single time I visit the doctor. I have ONE doctor that actually understands me, but he is the Cheif of Surgeon which makes it difficult to schedule an appointment – just to talk. I turn to these specialists to understand more about the adnormalities of my spine, hips, legs and head.
I want to have a long standing health where I can feel proud of myself.
The latest specialist (this month) included endocrinolgy to understand the movement in my body. Afterwards, I had a visit with a specialist to measure my bone density. And unfortunately, I landed myself in the emergency room after battling a 4 day migraine. I’m under a lot of stress but I tell myself — this is all a mindset (you can overcome this). I battle migraines from wearing my arms, neck and shoulders down to the bone (literally) by being mobile on crutches I won’t turn back to the wheelchair, I will not put myself thru that again. Growing up was awful with the teasing, but my skin is thick. You can’t break me — that’s why I live in Detroit. I can put up with it.
I am booking additional doctors for strengths and progress with sacral agenesis. I’m missing bones in my spinal cord which causes stress on my back. My hips arent even in their sockets.. and my spine curves so bad, I can feel it when tryng to get comfortable at night.
People Bother Me
Have you ever heard me complain about my body hurting? No, and why? Because when I listen to every other person complaining about their pity problems especially when they are so small.. I don’t feel sorry for them and I don’t want them to feel sorry for me too. I am disappointed in the amount of people who say they are “disabled” and they are perfectly abled. They take advantage of the system which ultimately f***cks me over, so if you are one of those people – shame on you. Breaking your foot and being in a cast for 6 weeks does not mean you are permanately disabled.. This is not OK to stop working and life on social security disability. You are a souless person for using resources that do not belong to you in the first place. *rant over*
Not everybody sucks, but when you find those people who are really unmotivated and sulky.. I just have to turn away.
People look up to me… I can tell myself YOU CAN DO THIS Life will BE OKAY. But can I really? I am sick and tired of going to these emotional doctor appointments all by myself. I mean — I cant really reach out to anyone because they live so far away. I feel helpless just laying there.. or getting poked with IVs all the time. The nurses and doctors feel for me.. but they become my med life family.
Sometimes I wonder if I should move somewhere else with more advanced medicine. I’d like to try new things with my disease to see what works, even research – maybe stem cell?
How common is my disease?
About 1 in 100,000 newborns have sacral agenesis (Resource: http://ghr.nlm.nih.gov/condition/caudal-regression-syndrome)
Look me in the eye and tell me why do I deserve this? I don’t deserve this. But I’m glad I have it. I’m able to learn from it and take care of others who have it. I can walk people through surgeries and give them heads up when things will be coming down the line. It is good for your heart to have a support group. I’m happy that I am able to reach out to a few individuals via social media and discuss my disease openly. You will never really understand unless you go thru it!
So what are my decisions?
Do I accept this?
Do I keep trying to find a solution?
How do I maintain a balanced life?
Am I really helping myself by researching more about my disease?
Or am I damaging what could be a future of non exist hope to be healed?
Well, who knows. But for now _ I’ll keep up the appointments to better understand what I am really DEALING with.