This may sound strange, but I’ve come to a point where I am very, VERY grateful for all the obstacles that I’ve encountered on my path. I’m only sharing my health issues because I feel I can put a positive spin on things – and maybe it will help someone else in a similar situation to have hope. It has not been an easy road and this may be hard to read, but I assure you that there are blessings within everything.
When I was a kid I was blessed with school smarts and a love for sports. Not just those things, but an abundance of other things. Everything came easily and it seemed to me like that must be the “norm” for everyone. I had two parents that loved me unconditionally and it’s unfortunate to realize what a rarity that is these days. For all intents and purposes I had a very lucky and wonderful childhood.
I know there are plenty of people that disagree with my choice of academic career. I can’t even count how many times my parents and I were told that I was missing out on a “normal” teenage high school experience. The fact of the matter is that I would not have done well or thrived in a regular high school environment. If you’ve been reading my blog for awhile you know that I started attending college classes when I was 12 years old. I went to a charter school between ages 12 and 15 so I could finish my regular curriculum and take classes at the local community college at the same time. During that time period my grandmother passed away. She had lived with us my entire life and was a huge influence on me. I was very distraught and my parents sent me to counseling in hopes I could have a place to sort things out. The counselors deemed I was grieving “excessively” which actually meant I was asking the “big questions” and struggling to make sense of the world in which we live. So they recommended Prozac, and after the sermon on what a wonderful drug it is and how I “needed” it my parents and I warily agreed. That is when my brain began plummeting into real depression – not just grief, but inability to cope normally with regular downs. These days they don’t suggest that kids or teens take Prozac because it actually makes them suicidal – things got much worse for me, and yes, I became suicidal. Back then they didn’t recognize it as a side effect of the drug, but diagnosed it as my “grief” or “depression” getting worse. This only started a parade of new drugs with terrible side effects that never allowed me to be truly “happy”. I could smile, and plenty of people were unaware of the depression I was going through; but inside I was a zombie – I couldn’t “feel” things properly. The anti-depressants also brought a horrible battle with my weight – which is something that’s already an irritating part of being a teenager anyway.
When I was 17 years old I graduated from the local community college with highest honors and transferred to the University of California Santa Barbara as a paleobiology major. I’d joined a Martial Arts group and walked the few blocks to campus every day. I felt on top of the world! I dreamed of moving on to UCLA for a PhD in exobiology and working for NASA exploring our solar system. It had only been two months of bliss when I got a very nasty spider bite. I’m allergic to most creepy crawly toxins anyway, but this was some kind of mutant spider. I didn’t see it bite me, but I found it in the window frame next to the couch where I had been napping. The allergic reaction was vicious and I wound up in the emergency room a day later. They gave me a course of an antibiotic called Keflex, and when that didn’t work they gave me a course of an antibiotic called Bactrim.
The bite infection healed quickly and the headache started. Notice I didn’t say “headaches” because it was one long continuous headache that got better and worse, but never went away. I became so ill I had to withdraw from my classes. The room would spin, and I would throw up a lot and often without warning. The head pain was excruciating and had some migraine properties like visual disturbances. My Mom took me to the emergency room nearly every week for three months because the symptoms were so severe and frightening. They kept sending me home saying I was dealing with migraines. Finally, on my 18th birthday, when my vision had narrowed to a tiny tunnel and they were concerned about an aneurysm they performed a spinal tap and I was diagnosed with pseudotumor cerebri also known as intercranial hypertension thought to have been caused by the Bactrim. The word “pseudotumor” sometimes makes people think “fake tumor” like it was just a figment of my imagination. A better word would have been “mimustumor” because the symptoms mimic a brain tumor. What actually was happening was a build up of spinal fluid in my skull and spine similar to what happens when a person gets a concussion. They had brushed a nerve when inserting the needle, and the spinal tap leaked for two weeks. I was admitted to the hospital while it healed. The pain of the spinal fluid leak is literally the worst pain I’ve felt in my entire life. The best I can describe it is like my spinal cord was a drain that was pulling my brain down as it tugged at the inside of my head. Usual treatment for pseudotumor involves regular spinal taps and sometimes a spinal shunt to relieve the pressure. While more spinal taps were talked about several times I never agreed to actually having another one.
The spinal fluid pressure pushed down on my brain and the back of my eyes from the inside. It could not have killed me. The only things it could have done were blind me and/or make me a vegetable from brain damage. The pressure would build up around my eyes and cause them to bruise as if someone had punched me. My school ID looked like I had a big shiner on my left eye. I lost some of the feeling, but not muscle tone in the left side of my face which always felt like pins and needles (this was eventually remedied with acupuncture of which I am a big fan). As you can imagine the depression got worse again.
I started having trouble in my classes. For the remainder of the brain disease I felt stuck in that I couldn’t seem to learn or retain any new concepts. Science and math, in general, are conceptual subjects – it’s not like you can memorize facts and get by. I did fine in the classes that were repeats of things I’d already learned. I failed in classes that were new material. It was the first time I’d ever received a low score on a test at all let alone a score that didn’t pass.
To top it all off they gave me a corticosteroid called Prednisone to save my eyes which caused hallucinations and my whole world felt very dark. It also caused my facial features to change so I looked like a chipmunk and didn’t recognize myself in the mirror. I blamed myself for a lot of my predicament. I would get angry at myself for not forcing exercise through the pain.
“Why can’t you just be happy?” I’d ask myself.
My brain was swimming in a stew of psychiatric medications and “guinea pig” medications for the pseudotumor – that is my best guess at why I couldn’t seem to be happy. I made things harder on myself by taking up smoking, and when I was very low I had started cutting. Yes, I realize it’s very taboo to talk about. I am not proud of it, but I am very happy I overcame it without having to carry the damage. I’m very lucky that the scars are so faint that most people never notice them. I was always teetering on the edge of my spinal fluid pressure spiking and causing projectile vomit. Yes, this is gross to talk about, but it happened. I threw up without warning almost every day for years. My dad had worried about bulimia, but that wasn’t it – it would often happen in public and was VERY embarrassing! Once it actually happened on a date. We had gone out to lunch, talked for awhile, and as we walked back to the car I could feel it coming. It was raining and I handed him the umbrella and ran to the bushes at the edge of the parking lot. There wasn’t any way to get to a bathroom in time and it seemed like the least populated place to get it out. He started walking toward me with the umbrella worried about what might be wrong. I had my back turned to him in hopes that I could hide it and it would just fall into the bush. No such luck – projectile vomit, remember? Just as my body was retching the wind picked up and it all blew sideways onto the ground as he came up behind me with the umbrella. I was horrified! Can you believe he still wanted to date me after that? We eventually broke up, but I have to give him credit for that.
By now you might be asking, “wait a minute, I thought there was a big positive spin on this”?
There are a few more bumps before the awesomeness – bare with me.
Toward the end of the brain disease I got a mild concussion which caused me intense pain on top of the pseudotumor pain. I can only describe the pseudotumor pain as feeling like a railroad spike had been pushed through the side of my head at angle. My regular pain killer, Dilaudid, had been upped to 16 mg every 8-12 hours to allow some relief. It was the only thing that offered a small break in the intense pain, and I will never touch the stuff again. If you don’t know what Dilaudid is it’s a step above Morphine. Each mg of Dilaudid is equal to six mgs of Morphine without any Acetaminophen. It was a blessing in that it took away a lot of the pain, and curse in that it worsened my mental state and depressed my respiratory system. The smoking had caused asthmatic symptoms and on top of everything I had walking pneumonia that I didn’t know about. This is when I had my near death experience. The walking pneumonia and the high doses of Dilaudid had paired to cause respiratory acidosis – I was poisoned by the carbon dioxide in my lungs because I wasn’t strong enough to exhale. I was told later that the paramedics had carried me out of the house wrapped in a canvas because they couldn’t get a gurney up the stairs and through the oddly shaped hallway. Later, I “woke up” in the emergency room surrounded by doctors with all sorts of odds and ends attached to me including a breathing machine. During the time I had “checked-out” I found myself in a warm and comforting space. There was no up or down or sideways – just a warm dark space and a tiny pinprick of light that seemed very far away. I didn’t actually see anyone, but I knew I wasn’t alone. I was rather enjoying the experience when a voice told me…
“You have to go back, you have a purpose.”
“But I don’t want to go back. I like it here.”
“You have to go back, you have a purpose.”
“If I have to go back what is my purpose?”
“You have to go back, you have a purpose.”
Then it was over. I opened my eyes in the emergency room for a few minutes and then fell asleep.
After recovering I flung myself into trying to figure out what my purpose is and trying to define it for myself. I was trying to put together a plan of action to fulfill my purpose and make a big impact on the world for the better. I still want to pursue that plan of action even if I wandered a little off course recently. A few months later the pseudotumor symptoms started disappearing. I had lived with a constant headache for seven years and I started getting patches of full relief. My neurologist said that some people actually “grow out of it” since it seems to mainly effect young women. I was relieved! It was like getting a special “get of jail free” card! I started to become more hopeful and ambitious like I had been before the whole mess.
Towards the end of the year I told my psychiatrist that I wanted to get off the psychiatric medications because I didn’t think they were helping, and possibly making me worse. He told me that I “needed” to continue them and perhaps take more because if I got off of them he told me I would “wind up in a mental institution or dead”. Yes, I quoted him verbatim on that last bit there. I told him that I would be taking myself off of them and he could either help me with a taper program or let me do it alone. He put together a very short taper program and set me up to fail. Had I stuck to his taper program his prediction might have come true. I looked at the piece of paper when I got in the car and crumpled it up. I had been on some combination of these medications since I was a young teenager – I didn’t expect myself to just adapt to being on nothing over a few weeks. I took six months and very slowly tapered off everything a quarter of a pill at a time.
Let me make it very clear that it wasn’t immediately all peaches and cream. I went through a very real, several month long withdrawal period that was made worse by the relationship I was in. In some ways I think the bad withdrawal period triggered worse abuse within that relationship. For a short time I dealt with a fear of being seen because of how he had treated me. I had covered all the mirrors and didn’t want to leave the house because I felt ugly and worthless like I shouldn’t burden the public with having to look at me. However, if things hadn’t gotten so bad between us I don’t know that I would have had the resolve to say I wanted to be done.
I’ve been told by one of the only doctors I trust that complete rehabilitation from the psychiatric medications could take up to five years. I’m currently two and a half years through. The first two years were a fine balance to walk and tougher than I’d like to admit, but the last six months or so have offered me exponentially more recovery. I haven’t escaped completely unscathed… yet. My body still has trouble making vitamin D because I was on the Prednisone for so long – that is something I’ve had to accept. I’m never going to try and live above latitude 42 ever again because it is too stressful on my body and taxing on my soul even with supplements. If you don’t already know this our Earth gets variations in sunlight due to the tilt which causes the seasons as it passes along the elliptic. Everything higher than latitude 42 doesn’t allow enough sunlight, and isn’t at the right angle to provide sufficient light for a healthy body to produce vitamin D. This is why a lot of people in Northern regions get the blues in colder months, and one reason why Alaska has one of the highest suicide rates in the country.
A few months after being done with the psychiatric medicines I was able to quit smoking without really trying. I had tried to quit in the past with intense withdrawals as a result. The current, still undiagnosed abdominal pain began about three months after I was free of the medicines, and began with about a month of unexplainable full body edema that put an extra 60 pounds (27 kg) of weight on my body. It put me in a wheel chair and I could barely sit-up let alone stand. Finally, they gave me a diuretic and over the course of about nine days I peed out 60 pounds of weight. That’s when I started to see more significant weight loss and my body started changing back to something closer to what I remembered having before all the sickness. That was in April and May of 2011, and the abdominal pain has had it’s own ups and downs since then.
So where am I today? The girl who nearly died, has had more hospitalizations than fingers, battled medication-induced depression for years, and spent over a month in a wheel chair unable to walk is doing particularly well! I’ve learned to accept that my body has been through a lot and gave myself permission to be extra good to myself. I’m still getting off that last bit of weight from all the medications, but I’m proud of myself for continuously making progress. I just happened to step on the scale the other day to find that I’d lost seven pounds last month. I dance and go for walks – sometimes I will just do yoga or pilates, but I am able to move like I haven’t been able to since I was a teenager. Heck, I’m able to wear clothes I haven’t been able to since I was a teenager! Since I was able to quit smoking I got my singing voice back and being able to sing gives me a lot of happiness. I don’t ever doubt the power of vitamins and supplements. I take 2,000-4,000 IUs of vitamin D per day and it has made a world of difference. I also take omegas, spirulina, vitamin C, vitamin B, and red raspberry leaf as well. Slowly but surely my immune system is repairing itself – I get more days where I feel stronger, and more days without pain. I feel like I can think again… not just mundane everyday things, but I feel like I can enjoy coming up with new hypotheses and concepts again. I can learn again! This has been one of the biggest blessings! I go through my old text books and I often stay up late researching new things online. Our world is a fascinating place!
This may seem like a lot that has happened. It really is only the tip of the iceberg of circumstances I’ve overcome. It would be overwhelming for me to put everything on the table in one post. Maybe some day I will write a memoir.
Some of you might be thinking – so what? If you didn’t go through all of that in the first place you wouldn’t need to be so happy about getting your health back!
Being chronically ill for that long taught me things that I would have never learned otherwise. It taught me a level of compassion and understanding that would have taken me a lot longer to obtain. Trying to get healthy taught me so many ways, tips and tricks, and a holistic approach to healing. For example, regular unsweetened coconut milk has an amazing blend of nutrients that will calm you down and ease your nervous system. One cup of regular unsweetened coconut milk every five hours as needed has worked better for me than any anti-anxiety medication they ever tried to give me. The only “side effect” is it can make you sleepy until you get used to it. I learned meditation that helped me understand my own mind and cope with aches. I try not to take anything stronger than Ibuprofen, and my body is healing. I can’t explain it exactly, but I can feel it healing.
I learned about people… they often put people in groups for pain management or counseling. I met so very many amazing individuals that have dealt with so very much. There are very few people that are exposed to all that in their 20’s. I learned a respect for what it feels like to have aged far before my time. I learned a respect for the fragility of life and the importance of maintaining a sense of awe even in the throws of agony. I learned that spending time on a swing set pretending I’m flying off into the sunset can be the small thing that makes all of the pain melt away. In any healing process it is necessary to laugh on a daily basis – it is not only the best medicine, but also an essential medicine. I learned that my body will react to how I treat it – I pamper it, feed it well, and make sure it gets exercise. It may seem simple, but connecting to the body I’m living in has been so important to me and I don’t think I would have already learned that connection without having dealt with illness. These days I also get to feel the joy of being truly happy. Not just smiling through internal pain, but really truly happy like I got to be in my childhood.
I’m currently 27 years old. I’ve been so ill that I know what it feels like to wonder how much longer I have left to live. Experiencing that has taught me that none of us will ever really know how much time we have left – healthy or not. It’s taught me to find blissful enjoyment in everyday life. It’s strengthened me.
I don’t believe in “impossible”. I only believe in infinite possibilities, the beauty of the present moment, and the very bright future I am building for myself. I know that I will continue to not only overcome any obstacles in my path, but thrive from learning from them. I believe in miracles.
P.S. I’m not afraid to be seen anymore, and did I mention I love smiling? Smiling is my favorite!