dysfunksjonell.no
10Dec/110

A year has passed..

On October 16th I went back to the neurologist to receive my most recent test results, and to discuss the MRI results from back in June. I've been so incredibly lucky with my neurologist. He's a fantastic doctor. We talked about my test results, and he was quite happy to inform me that there are no signs of more blood clots or any other problems. My blood tests are normal, and as long as I'm on the anticoagulants (and off any hormonal birth control) I should be quite fine. What a relief! I spent a whole hour talking things over with him, asking all kinds of questions, and when I left his office I felt almost.. light as air! After more than a year I finally got some answers, which made so much worry instantly vanish, and funny enough.. I've been feeling a lot better since that.

What really makes me angry though, or rather seriously pissed off, is the fact that because of the doctor I can't even speak of without becoming infuriated.. they were now unable to pinpoint the exact time of occurrence of the infarction because the scarring was more than a month old by the time I had the MRI. According to my neurologist I should have been transferred to neurology immediately when I arrived at the ER with my symptoms, which apparently is typical symptoms of an infarct. Instead of doing an MRI, I was admitted to the pulmonary wing, and got stuck with a doctor who didn't take me seriously and pushed me so far down into the darkness that I nearly failed to find my way back up again.

So, apparently there's so way of knowing for sure when I had this infarction or blood clot in my brain then, but according to my neurologist it's very probable - judging from my symptoms - that it happened when I was first came into the ER back on October 28th 2010. No actual harm was done by not doing the MRI at once, and I was put on an anticoagulant in March, but it maddens me that I was treated like an idiot instead of being taken seriously. And I don't doubt for a second that I had a guardian angel watching over me. I've asked to be transferred back to my old hospital, because I like it there. I feel safe, I'm respected and heard, taken seriously, and they've done a lot for me over the years. When I moved to Trondheim back in 2006 I actually didn't want to switch hospitals, but I thought it would be better, safer and easier to have my doctors close by. If I had known back then what I know now, I would never have transferred to St. Olavs Hospital.

I wish I could say I was done with this whole ordeal, but there's still things going on. Matters that bring me down, confuses me, and make me feel all empty inside. Things I wish hadn't happened, matters I don't wanna think about - but somehow I need to muster up the strength, the courage to take on the fight and climb to the top of that hill, without giving up.

22May/110

MRI, piercings and Captain Jack Sparrow

I can't believe it's been 12 days since my last blog post, I'm ashamed. I haven't been up to anything special, but it's been a wonderful two weeks indeed. Last week I was unfortunately suffering from an excruciating headache for several days, and so I've been feeling both dizzy and nauseous again. Frustrating, but somehow I think I'm beginning to get used to it.. How sad isn't that?

I've back at the hospital for the MRI since the last time I wrote anything, but I don't have any results to share as of yet. Maybe in a couple of weeks. Having the MRI was an unusual experience. It was interesting, loud and noisy, fun and a bit claustrophobic. Not that I'm claustrophobic, but I do understand how some people freak out while inside the machine. The radiologist was very nice, and I had no problem staying still for the duration of the examination. In a way I'm hoping that the results will confirm a stroke, since that would explain why I suddenly got sick last fall - but on the other hand I think knowing that I actually had a stroke at 31 would be terrifying. No need to worry yet, I'll have to hear what the neurologist has to say first.

Apart from that I've been very effective lately. Since I had to remove my piercings before the MRI, I decided to take the opportunity to have the jewelery in my two most recent piercings changed and fitted. I was a little worried since my tragus seemed pretty unhealed still, but it turned out just fine. Now I'm wearing a standard 16g 8mm labret in my tragus, and a 14g 6mm labret in my lobe. The plan is still to exchange the labret for a tiny little ring, but I'll leave it alone until it's fully healed now that I'm wearing the correct size of jewelery. The following day, Thursday, I went back to the hairdresser. It feels like I was just there, but when I checked my calendar it turns out it's been almost three months already! I kept to the same style as last time, with undercuts and all, but this time I wanted it even shorter. I'm absolutely loving it, and I plan on keeping it like this for a while with minor tweaks only.

We even tried to attend the premiere of "Pirates of the Caribbean: On Stranger Tides" in 3D, but apparently someone didn't want us to watch it and we had to go home without having taken part in the latest escapades of Captain Jack Sparrow. Sadface! After waiting for good news for about 30 minutes we were all told they were unable to start the movie, so they issued two free tickets for everyone present. Quite neat actually. We went back the next day and watched the movie successfully. I'm not sure whether or not I like this 3D business, I need time to adjust my eyes to the weirdness, but I liked the movie. I did miss William Turner and Elizabeth Swann though, but the mermaids were awesome. Somewhere in between everything I've mentioned above was Constitution Day, which we spent pretty much the same way as last year.

Did I say that nothing much has happened? Seems like I've been up to quite a lot!

11Mar/110

Cerebellum? Scarring?

It's been a while since the last time I wrote anything about my health, but it's been pretty much the same. Some days it's better, some days it's worse, but all-in-all it's at least better than it was when it was really bad. I don't think I shared, but I had a CT scan back in January. The CT scan was originally supposed to be an MRI, but someone along the way decided to change it into a CT scan instead. I wanted to have my head checked because I felt like it needed to be done, but in the hospital I was told that it was way too expensive to do without a suspicion of anything serious. Thankfully my doctor is one of the good doctors, he listened to me and ordered an MRI anyway (the one that turned into a CT scan). So, in late February I got a phone call from my doctor telling me that they had found some scarring on my cerebellum - they couldn't tell what might have caused it, or when it had happened - so he wanted to send me to a neurologist for more exams. In the meanwhile he wanted me to stop taking contraceptives immediately, and start on mild blood thinners to be on the safe side.

Today I went to see the neurologist, and man.. what a feeling. I finally felt like I was being heard when saying that there's something wrong with me! I think that alone is enough to make me feel a little better. I refuse to accept that this is all due to my low lung capacity, like they're trying to convince me of in the hospital. He was really nice, he listened and explained everything thoroughly. Apparently the scarring may very well be caused by a stroke, and I will now be examined as if that's the case. Once again I was nearly emptied for blood - OK, exaggerating a wee bit maybe - and now I'm waiting for an appointment for an MRI, for real this time, and of course the test results. Oddly enough I don't feel scared. If anything I feel relieved.. relieved to be heard, knowing that I'm not being hysterical, and the new hope of this being something that will eventually get better.

11Jan/110

My mind.. a place of chaos

Yeah, so I took another trip to the doctor's office today. I've been crying a lot lately, mostly because it feels so.. terrifying to be ignored when I feel like there's something seriously wrong with me. It's not a good feeling. It's like no one cares. It scares the hell out of me, and I've started imagining things. Like brain tumors and what's worse. I'm feeling dizzy, nauseous, sometimes I'm sensitive to light, sometimes it's like I've been staring at the sun for a long time. My right arm have been feeling numb on and off for some days now, and yesterday my right ear felt numb the whole day. Naturally I'm thinking it's something in my head. Thankfully - or whatever you choose to call it - these symptoms come and go, which is a good thing when it comes to the fear of brain tumors, making it much less probable. And I also know that these problems may very well be caused by my stiff neck, and the numb arm is probably caused by a pinched nerve. Most likely even. But the fear is just as real, just as scary.

Seriously, I'm not the kind of person who thinks the worst every time something's a little off, but it's a bit frightening to be me nowadays. I'm unable to control my mind and it keeps inventing these horrible scenarios where I have all kinds of incurable diseases, which in the end will lead to my death. I've never been afraid of dying, not even when I almost did die from severe pneumonia in 2002, but I've suddenly developed this insane fear of dying. I have no idea why, but the fear is there alright.

It really didn't help that I was told to consider getting a tracheotomy because of my lowered pulmonary function. I'm sorry, but that also scares the living shit out of me. Am I to become even more dependent of other people? Am I to become even more dependent of machines and inventions keeping me alive? Sure, I will absolutely consider a tracheotomy if, or even when that's the way to go if I want to keep on breathing, but please let me deal with this at my own pace! I've been told several times during this whole ordeal over the past three months that my pulmonary function has been stable for the last two years at least, so don't come springing this crap on me when I'm already feeling down and afraid there's something seriously wrong with me. Don't you understand that you're adding weight to the already sinking ship? I've been crying a lot lately, and you're not helping.

We have been talking about anxiety. And depression. I don't know what those two things are. Not the faintest idea. I've always considered myself strong and quite impossible to break, but somehow I think I'm broken. Do I have anxiety? I have no idea. Am I depressed? I don't know. How can I know? I spoke to my doctor about this today. He asked me a bunch of questions about how I'm eating, sleeping, feeling and so on. He asked me if I've been thinking about suicide. Suicide? I used to think of suicide as a way out if I was ever forced to live in a retirement home (I was 26 years old) - but no, to me suicide is the easy way out. I would never do that to the people who love me. See, now I'm crying as I write this. I have no idea why. Thinking of hurting my family breaks my heart. Maybe I am depressed? My doctor told me that I scored high on his depression test or whatever, so he wants me to see a psychologist which I'm quite fine with. Am I supposed to feel embarrassed about seeing a shrink? Well, I'm not. If I can talk my way out of feeling like crap, I'm all for it, it's worth a shot.

I like my doctor, he's a nice man. He listened to me. He seemed to understand my fear, and decided to have me get an MRI to rule out any brain tumors - in addition to seeing the psychologist. Maybe that will make me relax a little. I don't know. I'll just have to try to calm down. I know from experience that I'm much more prone to catching illnesses when I'm mentally down, so I need to pick myself up and be happy again. I've also started going to a physiotherapist for my neck problems, so hopefully that will add to the positive side of the scales.

So there you have it. This is the outline of what's been churning inside my head for the last couple of months. I suddenly remembered why I decided to start this diary, so here I am sharing my inner thoughts. Maybe it'll have a therapeutic effect on me. Maybe it'll even help in some weird way. I really don't know anything these days. All I know is that I need to find my way back to my old self again.