So today was pretty massive.
I’ve been so sick again recently, and also had really sore eyes, so I made yet another appointment with my doctor, and booked a sight exam.
My brother offered to come with me. He’s been very sick too – he got worse around the same age as me (26), and is still not working now – five years later. This scares if I think about it too much, so if I do at all, I try to convince myself we haven’t got the same illness – even though his symptoms are very similar to mine, and autoimmune and bowel diseases run in families.
Anyway, we went to see my GP. It was really good to have him there, both as a support, and to talk to the doctor about his experience. After five years of vomiting, pain, chronic fatigue, hospitalisations and countless stool samples, my brother had an endoscopy and stomach biopsies earlier this year – and he was diagnosed with giardia. It’s an incredibly difficult parasite to find. My tests for it have come back negative – but this doesn’t mean I don’t have it. In fact, it’s more likely that I do. As a result of this discussion, my GP has prescribed me a very strong antibiotic, Ordinazole. This is the only medication that worked for my brother. He still has constant pain and major digestive problems, but the parasite is gone. So if I have the same, making my autoimmune and digestive symptoms worse, this might help.
I’m terrified to take it. It’s a three-day course that will pretty much act like a nuclear bomb in my intestines. Considering the last time I took antibiotics, they caused the Clostridium Dificile infection that eventually put me in hospital, I think my fear is justified.
Today was the first time my doctor has really addressed that. It was the first time he has said the word “death.” He was talking to my brother about my hospital admission, and he said “Your sister had Toxic Megacolon. She would have died.” He had mentioned this to me before but he hadn’t explained what it was. Now I understand why the emergency doctors acted the way they did.
My brother then asked about the blue line he had discovered in my eye (I can’t see it because it’s at the corner, and I can’t feel it). The doctor had a look, and it turns out I have burst my eyeball due to excessive vomiting. This sounds hideous but I actually just laughed. It doesn’t hurt me, so after everything I’ve been through, I really don’t care. Plus, you have to laugh at this point. What’s the other option?
We were in with the doctor for an hour, which I think is pretty awesome. He may have made mistakes, and he may not know everything, but he really cares. He’s really trying to work with me.
After that I went to the chemist, and found out some good news – I’ve had so many prescriptions that I qualify for a discount card, which means that my prescriptions from now until next February are free! Yay!
Then I had to go to the optometrist. As I suspected, (blue lines not withstanding), my eyes have gotten worse. I currently have glasses for using the computer and reading, and these need to be upgraded – but I also need all-the-time glasses. So I have to get two new pairs. I’m upset – not because I have to wear glasses, I couldn’t care less – but because they’re fricking expensive. Just what I need right now!
Anyway, after all that I stopped by at the Bridge Street Collective where I used to work, and ended up running into a bunch of old friends, which was lovely but totally exhausting.
So, I guess if you don’t hear from me for the next few days, it’s likely that I’ll be struggling with these pills. I know it’s a risk, and I said I would never ever take antibiotics again – but jesus, if it makes a difference for me…
The thing is, I can’t keep living like this. I’m so, so, so tired. I’m so tired of the pain and nausea and exhaustion, and isolation, and never being able to do anything. I can’t believe the courage of those of you I know with lifelong illnesses. You are amazing. So if something can make even a tiny bit of difference for me, I have to try. I just have to.