Roughly 10 years ago I collapsed and saw my whole life get turned around for the worse. For a while I couldn't get up. For an even longer while I couldn't even get to the nearest supermarket, which is a 5 minute walk from here.
I went through all the medical evaluations the doctor could think of that matched my symptoms, and they found nothing. I went to a psychologist, who misdiagnosed and mistreated me.
Somewhere, around here, I started doing my fitness at physical therapy, which is the only place where I can do it now, and where I'm still doing my fitness.
After a year of this I found a new hobby, new friends, a boyfriend (who didn't last) and felt slightly better. But I was sure my real diagnosis was missed and I'd soon collapse again. Just as sure as my psychologist was that I would be fine.
So obviously, after a year, I collapsed again.
I went through even more, new, medical examinations, before being sent to a medical psychologist. She diagnosed me with chronic fatigue, helped me manage my fatigue, had many conversations with me, and sent me to a new and better psychologist to have me checked out for asperger's.
So soon I'd know I'm chronically fatigued (with all the other symptoms, like light sensitivity, muscle and joint aches, getting ill a lot, hyperventilation attacks, etc), and that I have autism. I got some help for this and some support at school. But not a lot.
With a whole lot of fighting, getting bullied, being misunderstood, being pressured, etc. I got through high school (VMBO) and got my assistent baker diploma.
But I couldn't hold a job. I was sick at home so often.
I applied for social security for the disabled (WaJong). The people who manage this (UWV) forced me to work 20 hours a week. I told them I couldn't. That I was sick way too often. They still forced me.
Obviously, this didn't work out. This was so much for me, that I got sicker and sicker again. I kept being sick at home more often, without knowing why.
I had days where I couldn't even get up. When I'd call in sick and say I couldn't get up, I would get a lecture about the importance of showing up at work. Both from my boss, and from my jobcoach.
Like motivation is the problem when I'm unable to get up...
Some of my colleagues were also not particularly understanding and found that they needed to be sure that I knew that...
After 2 years of that, I collapsed mentally in front of my jobcoach. She gave up and filed a report that I was unable to hold a job. I got a 'recovery period for an undetermined amount of time'.
I went to a chronic fatigue specialised centre, where they did some more examinations. They had me referred for an asthma test.
Yes, I had asthma! To know that was wonderful. Now the hyperventilation attacks were explained and treated.
I've been thinking I had asthma several times already, but my pediatrician didn't take me seriously. I'm glad the chronic fatigue specialists did.
But this didn't explain all my symptoms, and even when my asthma got stable, I still got sick a lot.
A few years passed. I occupied myself by putting up events and learning a lot about autism, and becoming an autism experience expert in the process. I also tried to get good coaching for living on my own, which failed (as you can read in older blogposts). I did some more things, but I don't have to make an autobiography here.
Now, several years ago I had a really bad response to some antibiotics. I had my blood and feces checked out. My pediatrician said I only had some raised inflammation levels, but that it was within the norm. She wasn't about to do more testing. I got angry and wanted those inflammations to be checked out, but I got refused.
Ever since my bowels were really sensitive to virusses and bad food, but my pediatrician ignored it.
A year ago I suddenly had 6 cases, of what the doctors then called a stomach flu, in 9 months. I sounded the alarm at my pediatrician. She said I was probably just unlucky.
I should've gotten a second opinion here, in retrospect...
She told me to wait it out.
I felt worse. I told her. She told me to see what happens. If it gets better.
At some point I couldn't eat anything with vibers normally anymore. It hurt me a lot and I couldn't digest it. I told my pediatrician this.
She said 'fine, I'll refer you to the specialist, but I don't expect anything from it.'
Well, as you have probably read in a blogpost from December: I have Crohn's Disease.
In my pediatrician's defense, she did apologise... And continued to make some excuses... Ok, no defense, whatever.
It hasn't been that very long since December yet, but it feels like ages to me. Since then I got 2 types of medicine (inflammation stopper and an immune system represser) and vitamin D to treat me. And I got regular blood tests (I'm very sensitive to the pain of the needle! Even with a local sedative!).
I got up with pain, I went to the toilet with pain, I ate with pain, I went to bed with pain.
Two weeks ago I got so sick from the flu, it hurt my bowels so much, I ended up at the emergency room to be checked out.
Luckily nothing serious was going on.
Today I got the new blood results back.
My inflammation levels are down to normal levels! Yea baby!
Everything was not for nothing!
I'm soooo happy!
Am I cured now?
I still have Crohn's Disease. It might still pop up someday, maybe even in a worse way.
But for now, the inflammation is down to normal levels and that's something I couldn't even dream of before!
Yea, I'm not there yet. My bowels still have some damage to recover, my vitamin D is going to take a while to build up and I'm still on the immune system repressors for maintenance.
But man! I got a diagnosis, a treatment and my inflammation is gone for now!
After all those years of fighting, I now have this.
After all those years of being ridiculed, pressured, not being believed, turned away, bullied...
I now have a diagnosis and a treatment and I know it works.
It feels like the end of an era.
I cried happy tears today.
Actual happy tears...