Over a year ago, I was diagnosed with a rare brain disease.
Now, I don't know how it feels to read that sentence from a blog that you may or may not even care about, but I remember how it felt when I was diagnosed. My life changed in a split second. I felt ripped apart. I looked my doctor in the eyes and tried to pretend like his diagnosis didn't bother me. I tried to have a good attitude about it - mostly because, to me, it felt like my doctor didn't act like it was that big of a deal. Let me take you back to the beginning.
A long time prior to my first visit to a neurologist, I began having problems. I don't know if the extreme migraines I suffered from in high school are when this problem actually began, of it they are related (no one does, really), so I'll tell you that when I started having these problems a few years ago, I didn't have a clue what was going on. I started getting tired all the time. I began falling down when I stood up out of bed. I would black out and wake up unaware of how, why, or when I had. I was missing classes in University, I felt sick and exhausted all the time, and it got to a point where I'm sure my professors no longer believed that I was missing class (or performing more poorly) every day because I was actually sick. To be honest with you, I can't blame them - I probably would have thought the same thing. I didn't have a problem with any of my professors, in fact they were all wonderful, understanding, and helpful. But it became too much for me. After spending months in and out of walk in clinics and emergency clinics with no results, I went to an Otolaryngologist, because I thought there was perhaps something wrong with my sinuses that I couldn't clear up. I was that I was imagining my pain and my dizziness because of anxiety and pain in my jaw from TMJ (a problem with the joint in the jaw). I knew he was wrong and that I wasn't imagining anything, but he didn't believe me, and I didn't know what else to do.
At the end of the semester, I dropped out of school from physical and mental stress, a decision that I didn't take lightly and I struggled with for a long time. I decided to take a break for a semester or two.
Now fast forward. Poor vision runs in my family, so when I went to get an eye exam and prescription glasses, I thought nothing of it. It was then that my doctor noticed an unusual pressure behind one of my eyes. This concerned her, and when I asked what it could indicate, she told me that it could potentially be a brain tumor. I'm so grateful that I wasn't diagnosed with that, let me just say that. But I was shaken to my core. I went home and researched what this could possibly be, and the top two results were the ones I feared the most.
See, there were 3 options.
1 - That is was nothing - just a strange pressure that was there. Harmless.
2 - It was a brain tumor.
or
3 - It's the one thing after a brain tumor that I kept seeing in my searches over and over again that I was terrified of. Something I had never heard of before. Something that changed people's lives. Something that no one understood. Something that has no cure.
At my first visit to a neurologist, I was told that I most likely had Pseudotumor Cerebri (also referred to as Idiopathic Intracranial Hypertension, or IH). I know, it's a mouthful. Sorry, I don't pick the names! If I had to pick a name for it, it would probably be a lot less scientific, much more frustrated name. In so many words, it was option 3. What this basically means is that there is an excess buildup of spinal fluid in my brain. Imagine a brain tumor, now imagine this excessive amount of pressure in it's place. Think about how you feel as you lift up into the sky in a plane, or when you swim to the bottom of a deep pool. The pressure on you feels forced; dizzying. Now double it. Triple it. Add in the worst migraine of your life. Triple it. That's as close as I can come to explaining what my head feels like every day. And though I don't often like to admit it to myself, I live in chronic pain.
I am trying to explain this so you can understand because it was difficult even for me to understand. Pseudotumor Cerebri is so rare that it only affects 1 in every 100,000 people. That's 10 out of 1 million people. Until this happened to me, I didn't know what it was, and to be honest I'm not surprised. 10 out of 1 million isn't a big number. It isn't widely known or researched, but for me it is very real, and it changed everything.
After I was tentatively diagnosed, I went through months of testing. You don't realize how much you don't like being poked and prodded at until it becomes your life. I underwent various medical tests like MRIs and lumbar punctures (otherwise known as a Spinal Tap - if you don't know what that is, you can read about it here: Lumbar Puncture - Mayo Clinic), and at the end of the testing, he was able to decisively determine two things - that I did not have a brain tumor, and that I did in fact have Pseudotumor Cerebri. When he revealed the results to me, he told me that my opening pressure was 3x higher than that of a normal patient, and I was immediately put on medication to try and control the pressure. After seeing this doctor for a while, I decided to get the second opinion of a neuro-opthamologist. I was moved up to a higher dosage of medicine and told that my other options were repeated Lumbar Punctures or a brain surgery to implant a shunt. I'd been told all of this before. That, and the resounding hum of the doctor "go-to" - lose weight. Which I would love to do, honestly, I would. Anyone that's been there before knows. But telling someone that can't get out of bed some days to exercise is like telling a blind man to see - he cannot, and he won't. If I'm to be honest, though, it's not them telling me to lose weight that makes me angry. It's that I wasn't overweight when I began having problems, and this doesn't seem to make a difference to them. I don't discredit that it probably doesn't help, not one bit. But telling me that my problem began with my weight when the problem was there before I gained it doesn't help. Nor does the statistic that women between the broad age group of 15-44 are more likely to have Pseudotumor, and women that are overweight between 20-44 are more likely to have Pseudotumor. My weight did not definitively create this. What is to be said then of the men and women that are of normal weight that have this? When I ask this, I don't get any answers. I get redirected to the treatments - there are other options, experimental, that many doctors are likely not to try and pursue, and you're left with medicine, Lumbar Punctures, or brain surgery.
Besides the political drama of the problem that is any rare disease (and even with problems that aren't rare), there is living with it every day. I get asked how I feel and I don't know how to explain. Even those that are close to me don't really understand what it's like, and it's like that for a lot of people that haven't experienced anything like this. How do you explain how something feels if no one has ever felt it before? A lot of the time it's hard for others to remember that you're even going through anything, because they can't see the illness. Having a brain disease isn't like having, per se, the flu. There isn't a cough or a fever, there isn't sweat and vomit - it's all hidden. I have people saying to me, 'You seem fine today' or 'You're looking better' or 'You walked around yesterday, so I know you can do it - why not today?' more than I care to count. That's not how it works, and just because you can't see it doesn't mean it isn't there. It's easy for people to think, 'But they don't look sick.' It's hidden from the world, and even if there isn't a strained look on my face, I am living with it. As I watch my favorite television show, I have to remember to sit so that the pressure in my brain doesn't feel so heavy my body will fall over. As I stand from a chair, I have to remember to do so slowly so that the room doesn't spin, and so that I don't fall down. When I walk, I have to do so carefully, watching my steps so that the world doesn't start spinning around me. It's easy to see when I'm having a bad day because I fall down, but if I manage not to fall that day, it doesn't seem bad to others that day, even if it is.
I can see how it would be easy to view it this way if you don't have a problem yourself. If you're not sick, when you wake up in the morning you don't have to stop and think about everything you do before you do it and how it will affect your day.
See, I only have so many "spoons." If you're at all wondering 'What the hell does that mean?' good question! It's from something called "The Spoon Theory," which you can read here. Just to summarize it for you, "The Spoon Theory" was developed by a woman named Christine Miserandino because her best friend asked her what it felt like to live with Lupus. She tried explaining what I have explained - the doctors, the pills, the pain, but her friend was looking for a different kind of answer. They were sitting together in a diner, and all of the sudden Christine began grabbing spoons and thus the theory was born. She explained to her that healthy people expect to have an unlimited number of "spoons" (which represent choices) a day, but when you're sick, you don't have an unlimited number of "spoons." She then asked her to go through her daily routine and took away spoons, explaining how every action she took would have a consequence. She could either do this or that, not both - you wouldn't have enough energy left to do everything. Christine also explained that you could borrow spoons from the next day, but that might mean you won't have enough spoons for tomorrow, and you never know when you'll need more spoons. As her friend's spoons diminished, she began to see what it was like for Christine every day, and Christine has since used this to help her family and friends understand what she goes through. She even uses it to tell them when she is having a particularly bad day by saying she's "out of spoons," and then she realized that this theory could be helpful to others and applied to other kinds of diseases. You should really read her full story, it is a wonderful insight to what it's actually like, especially for those that want to know about it but don't go through it. It's the best way that I can explain it, and I have found already that it helps me tremendously. So if you want to know what I live with every day physically? Just to name a few: splitting migraines, a world that spins, almost constant dizziness, weakness, exhaustion, nausea, vision loss... but how do I feel? Spoon theory really helps fill in a lot of those gaps.
Honestly, I wish I could write an "I survived" story for you here, but the truth is that I am currently "surviving." I don't know what my future will hold. I don't know what will work or what I'll have to go through from here to recovery. I won't say that I'm going to be a trooper, either. I shouldn't have to hold my head up high and say that I am okay when I feel like falling apart. But I won't let it take me. I will beat it. It isn't me, it won't become me, but it has and will change me.
I hope that any one of you that took the time to read this learned something you might not have known before, or that I maybe helped just one person that is going through something, even if it isn't this. I hope that one day more people will know what this is, and someone will find a cure. I pray that I never have to see anyone I love go through this or something like it, and if you are, just remember that you aren't your diagnosis, you are whoever you want to be, and you're amazing.
I am writing this to you all because September was the awareness month for Psuedotumor Cerebri, and I am finally ready to share my story.
If you'd like to see a support group for Psuedotumor Cerebri aka Idiopathic Intracranial Hypertension, this is the Facebook page where I first discovered "spoon theory."
If you have any questions or comments, feel free to leave them here. And if anyone is going through something that feels like it will take them over - physically, mentally, emotionally, whatever it is - I am here to help. You are stronger than you know, and you are not alone.
Bis zum nächsten Mal,
RayKay
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