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.
Another step.. forward?
Once again I've been rather slow on updating about my current health situation, but the truth is that nothing has changed much since my last update. Either. Having a major déjà vu here! No, wait, I've said exactly the same thing in my last update. I've been thinking a lot, trying to figure out stuff on my own, without much luck. Days go by, we keep planning things to do, happenings, events, like nothing's wrong. At the same time I keep thinking "what if", a thought I could really do without, but I've decided to try living my life moment by moment. At least it's said to be healthy.
A little more than a week ago I went to a psychologist. I gave up on waiting for a possible solution to hit me over the head (and according to the psychiatrist my doctor tried to refer me to I'm way too healthy for even getting an appointment), so I went private and paid for the appointment myself. I might be somewhat judgmental, but I didn't have much faith when I scheduled the appointment. All I knew was that I didn't wanna see a psychiatrist. I didn't wanna see anyone with had the ability to put me on medication. I think it might be one of my biggest fears, to be medicated against my will I mean. I felt a little insecure as I entered his office, but it didn't bother me as I had imagined it would. I actually kinda enjoyed it. I tried to sum up most of what has happened during the last 12 months, told him about the infamous doctor, how she's treated me, about my thoughts and fears, and asked him if it's even possible that it's anxiety I'm experiencing. He asked me some questions, wanted me to elaborate on my feelings. We talked about symptoms, he explained how panic attacks and anxiety works, and said it was highly likely it's anxiety I'm struggling with. He achieved an extra gold star in my book, for stressing the importance of listening to my body, and questioning the doctors - and he told me to keep fighting, because I'm the one person who knows my body and how I really feel. I felt at least 10 tons lighter when I left his office, I'm not exaggerating. He recommended a book for me, "Full Catastrophe Living" by Jon Kabat-Zinn, a book I actually purchased earlier this year after watching a few documentaries about the human brain on TV. For a lot of reasons I hadn't started reading it yet, but now I've started and it seems quite interesting. After a whole 60 minutes with the psychologist I felt so much better, relieved, rejuvenated and ready for the next battle. I've never been more grateful for being told that I'm normal, with a normally functioning brain. Suddenly I didn't feel as lost anymore.
After having waited for nine whole months, I was finally scheduled for an ultrasound of my heart this Tuesday. I'm shaking my head as I type these words. I mean, how can it be healthy for someone to wait for several months for a heart examination? The most important part of the body, the heart. Nine months? I'm just glad I'm not suffering from a heart disease. Because I'm not. I had the most fantastic doctor, a calm and assuring man, who took his time and examined my heart thoroughly. When he was done he told me that my heart was fine. The size was normal, my heart valves were declared healthy, and so were my arteries - no problems at all. Apparently people with weaker lungs are prone to a certain heart problem (regarding lack of oxygen) and it somehow seemed like he anticipated to find this problem with me, but there was absolutely nothing wrong. I could have hugged the man! Naturally my heart acted exemplary while I was there, and my pulse was about 95. I also had an ECG, and a normal blood pressure. The only thing he was unable to say much about was whether or not I might have an arrhythmia, but he said it was unlikely. He gave me a little gadget to put against my chest whenever I feel like my heart is acting crazy, and it'll record everything. After five recordings I have to take it back to the hospital to get the results. Quite fascinating for a gadget whore like myself.
On Monday I decided to take back control, and after having discussed with my family I finally picked up the phone and called St. Olavs Hospital to tell them I won't be coming back. At least not to the pulmonary ward. I dreaded the call so much that I felt sick to my stomach, but when I hung up the phone I just sat there, smiling, feeling like the nurse on the other end actually understood why. It felt good. It felt right to follow my guts on this.
And again I have to stress how insanely wonderful it is to encounter doctors who actually listen to me, and who takes me seriously! The psychologist and the cardiologist, in addition to the nurse, made me feel so much better than anyone else has managed for the last 12 months, just by making me feel like I'm important, that my life is important - as opposed to me being a lesser being who's going to die soon anyway. Even though my days are still filled with struggles to get through, sometimes feeling so crappy it's almost impossible to get out of bed, I'm all-in-all feeling a lot more like my old self again. I've rekindled my will to fight, my will to be heard and seen, and most importantly.. my will to live.
Learning to trust.. myself
I haven't really been updating on my health situation lately, but the truth is that my state hasn't changed much since the last update. I still haven't heard from the neurologist, or any other doctor for that matter, and most of my days in Paris was tainted by the everlasting feeling of having a humming power plant inside my head, among other things. I don't remember if I ever mentioned it, but one of the times I was in hospital early this year, I was appointed a nutritionist. She wanted to know what I was eating, have my blood drawn to check all levels of vitamins and minerals in case of any deficiencies - and after she had concluded I was suffering from malnutrition just by looking at me (!), she told me to start taking these nutrition drinks called "Nutridrink Compact". Oh well, I've tried them before and hated them, but I thought I'd give them another try since I'm supposedly an adult now (and therefore not allowed to use the sentence: "I don't like it" anymore). I quickly understood that the woman was too hung up on BMI to be able to actually classify me as healthy or ..unhealthy, but I went with it. I mean, I don't weigh much and I'm definitely underweight as opposed to a normal person my age. A normal person would probably be suffering from malnutrition with my weight, but I'm a small female - and I don't have much muscle mass to flaunt around due to my handicap. My diet is varied, I do pay attention to what I eat, and I should by no means suffer from malnutrition - but you know, a layman always knows best.
When the results from the blood work came back it turned out I was seriously low on vitamin D, so I was told to start a supplement. I was also told to keep in mind that since I'm in a wheelchair (apparently meaning I'm sick), turning older and certainly in the risk of getting osteoporosis (both postmenopausal and in general), I should take a calcium supplement as well. Sure. I have fallen out of my wheelchair so many times I've lost count. I've smashed my head into both tile, wooden and stone floors, yes.. smashed, I will never forget the sound of my skull hitting the rock hard floor. I've crushed my fingers into concrete walls. I've suffered from so severe pneumonia that my mom had to put pressure on my chest to help me cough, several times. And I have never, ever broken a single bone in my body. Never.
At the time I was feeling helpless. I was feeling insecure, and afraid. I knew something wasn't right, so I was willing to try just about anything to get back to normal as soon as possible. As I said, this was back in the beginning of January, it's now been seven months. I trusted the nutritionist who "prescribed" 1000mg calcium and 25µg vitamin D. I started taking supplements, and drinking one nutrition drink each day. The first problem I encountered was the racing heart I've mentioned before. It persisted for about a month, and I felt like I had been running a marathon for every single day of that month. No one answered my questions, nothing was done. All I was told was that I have bad lungs, and to face the fact and deal with it. I was drinking one Nutridrink each day, until I one day - for some unknown reason - decided to stop. They didn't make me feel any better, and I couldn't get myself to like them either. The very next day my heart slowed down, and within another day it had stopped racing. I suddenly realized that these high protein nutrition drinks with 300 cal (and 12g protein) per unit had been too hard for my body to digest, causing my heart to speed on with around 145 beats per minute.. At first I was so happy to have found the cause of it, then I felt devastated because it had been scaring the crap out of me, and now I'm just mad. Mad that they actually caused me more pain, more suffering, more anxiety, more insecurity. Like I didn't have enough to deal with.
Now, back to the supplements. I've been taking one Calcigran (500mg calcium and 5µ vitamin D) and one vitamin D (10µ) for some time now, after the nutritionist informed me that my vitamin D levels was back to normal. As most of you know, I've been feeling unwell in general. I've been dizzy, nauseous, felt bloated, instead of feeling hunger I've felt sick (both before and after meals), and I've had this odd feeling of something humming inside my head. It's seriously hard to explain, but like the sound you can hear and almost feel when you're standing close to an electrical fence. You know what I mean? I've had problems concentrating, remembering things, headaches, and so on. A little more than two weeks ago I stopped taking the calcium supplements. I started wondering if maybe the extra calcium could be doing this to me? I googled it, and realized that some of the symptoms of too high intake of calcium looked very similar to what I was experiencing, and I made a decision to stop. Worth a try, right? About four days later the humming inside my head disappeared. The same humming I thought I would have to live with, and grow accustomed to, for the rest of my life. Now, a little more than two weeks later, I'm feeling so much better! I'm smiling a lot, feeling happy for absolutely no reason at all. Life is suddenly good again! I have no guarantee it won't return, it might just be a coincidence, but I sure as hell won't start back on the calcium supplements until it does. And once again I'm mad that they caused me more pain, more problems, more obstacles to conquer just to be able to live through the day.
Through all these months, with the suffering, fear and frustration I've been experiencing, I've discovered that I have to be my own doctor. I have to trust my gut feeling, and try to work out my problems on my own. Because no one else will hear me.
I rant, therefore I am
I've been wanting to blog for the last couple of days, but I haven't been able to go from my last post to some trivial post about less serious topics like shopping and makeup. My days are still influenced by the MRI results, and even though I haven't experienced anymore anxiety attacks I'm still feeling down.. in a way. I find it hard to explain. It's frustrating that I cannot get the hold of my neurologist until after I'm back from Paris, but I spoke with my GP who assured me it would be safe to go on holiday and told me to "live life and have fun". I like my GP, I feel like I can trust him. I also feel like hugging him for actually listening to me, and taking my worries seriously. So I'll go to Paris in less than three weeks, I'll bring my medication (consisting of blood-thinners, allergy pills (calming effect) and beta blocker (in case my heart decides to run wild again)) and just be annoyed that I actually have to eat pills on an everyday basis - I hate medication - but most importantly I'll have a good time, and enjoy Paris with Øyvind to the fullest.
I'm not so sure I'll live to see flying cars anymore, or more realistically live to become an old wrinkly grandma figure, mostly because a certain fiendish doctor had me convinced for a while that I'm already standing with one foot in the grave. I think I've managed to dig myself out of that hole, and I certainly don't have St. Olavs Hospital to thank for that. Now it's time to look forward instead of backwards, think positive and I'll deal with the rest when I come home from vacation.
Life’s a BITCH, then what?
I'm getting more and more frustrated every day with how I'm feeling. I'm sick of being dizzy, nauseous and generally low on energy. I spent this Tuesday and Wednesday in the hospital once again, this time for a routine checkup. The night before was horrible. I kept waking up with a thundering heartbeat and I ended up having slept for less than one hour before we drove down to St. Olavs Hospital for my 11:00 AM appointment. Once there I was told that my room wasn't ready just yet, so I had to go sit down and wait in the hallway. I waited. And waited. When the time had passed 13:30 PM something finally started happening, and around 14:00 PM I was told to go down to Spirometry to have my breath measured. By then I was so tired I felt like passing out, and I was pretty mad that I had just spent three hours waiting when I could have been at home getting some much needed sleep instead. I also had an incident where an anesthetic nurse, sent to set me up with intravenous fluids, tried poking me with needles no less than six times before she gave up and told me she could send one of her colleagues instead - if I wanted to. She even managed to hit a nerve or something in my hand so I jumped from pain, and all my fingers curled up.. My arm is still sore four days later.
I don't feel like I got anything out of that routine checkup. They seem to be far too focused on my pulmonary function, instead of actually listening to me when I try telling them there's something else wrong with me. I know that I don't have perfect lungs, I know that they are pretty weak, but I don't need to be told three times a day. I've been living this life for 31 years now, I've paid attention. Once again I'm told that there's nothing wrong with me. Once again I'm told that everything's perfectly normal, apart from my lowered pulmonary function that is. And once again every fiber in my body is telling me otherwise, and I'm so frigging frustrated in addition to all the other emotions running through my body, making me depressed, sad, negative and all that crap at the same time.
Can someone please tell me how to handle this? I know there's a saying: "When life hands you lemons, make lemonade", but I don't have the faintest idea on how to get through this rough patch. At least you know why my diary is kinda quiet nowadays, I just don't have.. whatever it takes. Bear with me, please.

Uncurable shopaholic and makeup addict with an unhealthy love for everything colorful. Medium dark brunette with dark brown eyes. Also known as KinoGodt or Psychedelic Wheels.

