Life in a Wheelchair: Rare Disease Awareness Month

Hey everyone! It’s rare disease awareness month, and I am super late to the game! It’s been a hot hot minute since I’ve posted anything on here but I felt compelled to share something for this month, as I, if you don’t already know, have a rare brain disease called Idiopathic Intracranial Hypertension.

Basically, my body has the symptoms of a brain tumor, but what’s going on in up in my head is that I’m producing way way way too much spinal fluid, which normal people produce a way smaller amount of. This condition, when it’s not idiopathic, meaning when they can pinpoint an underlying cause for the Hypertension, is often life threatening as the brain can’t handle the increased pressure. For example, people sometimes develop this condition when they get into a really bad car wreck, and if they can’t find a way to get rid of the excess buildup, it can kill you.

Like I said, think brain tumor symptoms. However, because I am an idiopathic chronic case, they have no idea why I have it, where it came from, or how to get rid of it. There are only ways to manage it and some people find a treatment that manages to get rid of it, and for others those methods don’t get rid of it. I am the treatment to help manage it but it isn’t going away kind, but the condition is still benign. Now that I’ve straightened that out, I wanted to talk a little about how I dealt with some of the new aspects of my life after I was diagnosed up to now in honor of awareness month.
(If you want to learn more about IH, visit the Intracranial Hypertension Research Foundation website.)

I remember the defeated moment that I first realized I would have to use a wheelchair. It was, to me, one of the worst things I would have to come to terms with. It was at Halloween Horror Nights just a few years ago, and I could barely get through the night. I waited in line and sat down as often as I could, my head swimming and throbbing, my stomach turning; my body was winding down to a complete halt. As the sun went down I found myself walking into one of the houses and I remember little other than the rooms spinning and every step weighing on me. I remember that the plan was to continue on until park close, but I could hardly make it through the exit to go sit down. I sat down and rested for at least 3 hours before I forced myself to stand back up.

My sister and I in Germany together before I had IH
I think I did one more house and I couldn’t do any more, so I went to the show that was there - Bill and Ted’s Excellent Halloween Adventure - and had to go back to the hotel, missing the whole night and having my sister miss it as well. I felt completely defeated. I felt devastated.

My sister and I in Germany before I had IH

 I could barely get my legs to move. When my sister went to shower in the hotel room I remember breaking down in tears. Not just because my body had broken down on me, but because she had pointed out to me that I needed to use a wheelchair, and I knew that despite my immediate inner response rushing to deny this, she was right. So for the rest of the trip, I stood in line and rented a chair from Universal every day. “This is just a temporary thing,” I told myself, “You need this now, but you won’t need it soon. This is just for now.” My next trip down, I borrowed a wheelchair from church. “Just for Halloween Horror Nights,” I told myself, “It’s just for the parks.”









I told myself this every time I used this chair. When I needed it in the mall. When I needed it in a store that didn’t have a convenience shopper. When I was anywhere I would need to be on my feet for more than a few minutes, I told myself “it’s just temporary.” Then one day, I realized how long I had borrowed the wheelchair and bought my own. What did I say to justify this? “I’ll only need it for now. When this is through I won’t need it anymore.”

Me and my amazing friends at HHN 2017

It was like this for longer than I care to recount. Needing the chair, denying that I needed the chair, and back and forth I went. I stayed in limbo in this constant state of denial - feeling ashamed for needing a wheelchair, feeling ashamed that I could no longer do the things I used to do, feeling shame for being who I now was. It was a lonely, bitter feeling that came creeping into my thoughts when I tried to sleep and made me want to hide myself away because I couldn’t stand who I was.




Let me make this clear, being disabled and needing a wheelchair weren’t the only things hindering my ability to want to face who I was, but in the face of so many reasons, I am able to say with confidence that it is the reason I was ashamed. I would think back on my able-bodied life and remember the things I could do. Physical exertion didn’t used to be so hard. I used to be able to jump and, though I hated it, sprint and run. I could kick around a soccer ball, I could jump on a trampoline, I could even ride roller coasters. I could do simple things before without draining myself so much too, things that might sound utterly ridiculous to anyone able-bodied, like changing clothes, showering, bending down, and walking. I despised it. I mourned it. I began to grow resentful of my past self. I used to complain when I would walk so long my feet were killing me, and that made me want to go back in time and smack myself as hard as I could. “What I wouldn’t give to be able to walk like that now,” I thought. I used to do so many things that, until I couldn’t do them, I took for granted, the way it usually works with human beings. That’s why songs like Big Yellow Taxi exist. We never know what we have until it’s gone.

There came a day, amidst all of the madness I had created in my head, when I realized that I had been lying to myself. I relied on the wheelchair. It was time to accept that. It wasn’t going away, and I didn’t need to keep willing it away. Besides, I had been through so much with it already. In my wheelchair, I became a new person. In my wheelchair, I learned, and am still learning, to accept my new limitations and my new self. In my wheelchair, I met amazing people and had amazing experiences that I otherwise would never have had. I would never have met my friend and fellow gal on wheels, Jessica, had it not been for the fact that I was in my wheelchair. I’m confident of this. I wouldn’t have met her son, Stephan. I wouldn’t have met Jose. I wouldn’t have met any of these amazing, wonderful people if I had not accepted what I needed.

I met Jessica when I was still in a park rental chair. Jessica, in so many ways, helped me accept this new reality, and not just to accept it but to make it more than just a thing I have to live with - something that I should embrace rather than be ashamed of.

Jessica in her scoots with Sam the skeleton

I always recognized Jessica because she was in a scooter, all lit up in Halloween lights, with a skeleton named Sam on the back like a mascot. She taught me the ins and outs of how to better take care of myself now that I needed to get around differently. She told me to stand up for myself, something which I had always done as an able bodied person but for some reason, when it came to my wheelchair and mobility, I just didn’t want to do. I didn’t think I deserved it, simply because of conditions that aren’t my fault. When I look back at how crazy that sounds, I can’t believe I ever let myself feel like that. Slowly let it sink in - I didn’t believe I was worth taking care of myself because I was diagnosed with a brain disease that I cannot control. Jessica basically called bullshit, for lack of a better way to say it, and told me to take care of myself.

I took inspiration from her and wrapped lights around my chair, which felt unexpectedly empowering. When we ride around the park together, we look like Disney’s former Electric Light Parade. I laugh and I enjoy my time at Halloween Horror Nights, with all of my amazing friends rather than feeling like an alien in my own skin. 

Me with cast from Bill and Ted's Hween Adventure and my friends

I no longer feel ashamed to sit in my own wheelchair. I no longer feel ashamed to take care of my basic needs. I no longer feel ashamed that I am a disabled girl in a wheelchair. I feel different, and I’m not quite sure what that different is just yet, but I realized along the line that I don’t ever want anyone to feel about themselves the way that I did for so, so long. It’s like when I was bullied in school - when I was young I let it define how I thought of myself, and when I grew up I wanted no one to be bullied into hating themselves like I was, except this time I bullied myself. I can’t imagine that I am the only one that has felt this way about their disability, no matter how big or small the impact on their life. If reading this helps even one person the way that Jessica and my other friends helped me, I’ll be happy that I shared my story.




If this is you, if you’ve been diagnosed with something or you’re trying to figure out what’s wrong and everything feels completely fucked up - you are different now, and your life will never be the same. 

Wild Stallyns & Jack the Clown (HHN) self-made decorations

It will change you forever. But it doesn’t have to be bad. It’s just a new chapter. I can’t tell you what will happen but I can tell you that you’ll figure this out eventually, and please, please don’t neglect or resent yourself along the way. Don’t ever feel ashamed of who you are or what you now need. Also, you’re not alone. 💜💜💜

P.S. I used to avoid taking/posting pictures of me in my wheelchair like the plague - screw that!

My best friend and I with Victoria Atkin (Evie Frye from Assassin's Creed: Syndicate

My Evie Frye wheelchair Dragon Con badge

My best friend and I with John Noble

Self-made Stranger Things Alphabet Wall decoration for chair

My friends and my cosplay left to right: Nancy, Max, Joyce, and Eleven from Stranger Things

To donate to or learn more about IH, visit the IHR Foundation website:
IHR Foundation Website
IHR Donation Link



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My Diagnosis - IHope For A Cure

Grüße alle!

Today I am going to post about something that has nothing to do with makeup, being nerdy, or anything like it. I'm going completely off topic and very personal.

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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