Epilepsy struggles (guest blog)

 My name is Keyt (Kate), I am 51 years old and I have had Epilepsy caused by Hydrocephalus since birth. Unless you are someone who has known me longer than 15 years you may not know this fact because I have been lucky enough to have found a drug cocktail that has stopped the seizures. However, it was a very long road to this point which included all kinds of medication trials, hospitalizations, various doctors and even comas and dying.

Like I said, my epilepsy was caused by Hydrocephalus. Because this is a hydro blog I won't go into too much detail except to say it's an overabundance of spinal fluid in the brain causing a swollen head and various other health problems, including seizures.

I began having seizures at 3 months old. My mom took me to numerous doctors but because infant neurology wasn't common in the late 60s/early 70s i was hospitalized often and placed on the few medications available at the time. 

By the time I reached 5 years old I had become so sick doctors said I would never be able to go to school. Finally at that age I was placed in C.S. Mott Children's Hospital in Ann Arbor, Michigan where, while in a coma I was finally diagnosed with Hydrocephalus.

School wasn't easy from kindergarten through graduation. Kids never understood me because if I wasn't having seizures I had major temper and behavioral problems because of the seizures or the high doses of medications I was on. Teachers tried to handle me but the older I got the harder to handle I became. Some thought i was just incorrigible and my parents were just making up this thing called hydrocephalus.

As an adult, seizures affected my life more than most people knew. I was still having breakthrough seizures (seizures despite being on medication) and by the time I was in my late 20s I gave up and stopped taking any meds at all. I began drinking a lot and acting out with every boyfriend I had. I didn't care what was happening with my life because once anyone heard the word epilepsy they would stop talking to me as much or just disappear.

In 2001 I was in a very bad car accident. I remember feeling as if I was about to pass out and while driving down a busy road with few open spaces, I ended up in a swamp. Witnesses say I traveled at least a mile and miraculously never hit a car or a house! Call it a miracle or a wake up call, or both, this was when I decided maybe medications were necessary. Since then I have been on Tegretol and Neurontin and ive only had 1 seizure. That one was because I had a kidney removed and couldn't take the doses I had been on. 

Epilepsy happens in many forms. Some people have reactions to light or extreme temperatures (I dated a guy once who would have full blown seizures up to 40 times a day if it was hot outside!), others can't handle quick movement like in cars or amusement park rides. Some people have full blown fall on the floor, twitching and drooling seizures, others stare off into nowhere for a while. 

Epileptic patients rarely talk about their condition even when it's very obvious. We want patience and understanding for our behavior because even if we aren't having seizures, epilepsy still has an affect and so do the medications we have to take for a lifetime. Seizures will seriously affect the brain, some more than others.  In my case I have a speech impediment and bad anxiety disorder. I know some people who can barely talk or walk at all.

As with any other disABILITY, most people would rather others asked them about their illness than be judged for it. I've had seizures at school, at family gatherings, with friends and various places in public. I don't mind answering questions as long as others are really interested.

Life with P.T.S.D (Post Traumatic Stress Disorder) Guest Blog by Keyt Harrington

Well, I haven't been here in a while! It's been a very busy summer with a bathroom remodel, a old-time buggy wagon restoration, farm remodel and me being sick with...what else..shunt issues.

I wanted to touch on something that relates not just to those with Hydrocephalus but everyone that walks with Earth. It's called P.T.S.D. Most people know it as Post Traumatic Stress Disorder, but I call it Please Take Seriously Disorder.
I was diagnosed in 1997 after having gone though a tumultuous marriage and divorce and subsequent issues between my parents that I was put in the middle of. I began therapy in 1999 and only stopped a couple of years ago. Here's a good description:

http://www.webmd.com/anxiety-panic/guide/post-traumatic-stress-disorder

Most people think of P.T.S.D. as something people who have been in war deal with. That is far from true! Only in the last 10 years or so are doctors starting to recognize this condition in various other traumatic issues. If someone has been through anything from physical or emotional abuse or even medical traumas can have this disorder and I fit the bill in both of those areas.

Really, my issues could go back to when I was in school. Most kids didn't understand why I was sick all the time. No one knew how could I be out of school for months at a time and come back looking a lot different than the last time I was there, or why I would come to school with bandages or bandanas on my head. Some people thought I had Cancer or some kind of contagious disease. Most kids were decent to me, but I did have a good share of them who took what they didn't know and turned it into something it wasn't. I learned to take it and even tease myself before anyone could and it eventually got better. That was until I got married.
Whenever my ex and I would argue, he would say things like "If you weren't so stupid" or "Why are you acting like a psycho", etc. That would set me off in ways I now find embarrassing but it eventually tore my marriage apart. Subsequent relationships didn't work out well either because I would think my boyfriends hated me for one reason or another when in reality, I hated myself because I was letting the past control my every day thoughts.

In 1997 after a terrible argument between my parents that led to me having a major emotional breakdown, I went to my room and was crying so hard I couldn't breathe. That was the last thing I remembered because the next thing I knew I woke up in a hospital. A short, stocky guy in a suit was sitting on the edge of my bed and he asked me how I was feeling. Other than a raging headache I thought I was OK. I sat up to talk to him and my stomach started to reel. The guy in the suit asked me if I wanted some water and he had some questions for me. What the hell, I wish this idiot would go away because I just want to sleep. I figured I was there because my shunt failed again, it's not like it was the first time I woke up in a hospital not knowing why!

During our conversation I learned I overdosed...again. No, it wasn't the first time and it certainly wasn't the worst but it would eventually turn out to be the most pivotal. I remember asking him why he even cared, I've never met a neurologist that did. He said he was a Neuropsychoanalyst - basically a doc that studies mind and brain. I asked if attention was brought to him because I had gone as crazy as a person could go. He said the best 4 words I had ever heard a doctor say; "You're far from crazy!". I spent the next week in the hospital being asked every question imaginable when Dr. Small said my issues were caused by P.T.S.D. I had never heard of it but I was very glad to have a name for it!

It's been 16 years now since that visit from the, as he called it, "Small name, long title" lol. I was on meds for years but when my neurologist changed my anti-seizure meds, I had to go off of them and increase the dosage of one of my anti-seizure meds which helps with the "freak outs". I still have issues now and then. For example last year someone called me a retard when I was acting silly. I hadn't told that person my issue with that word but it shut me down immediately and I wasn't able to speak to them for a couple of days. More recently someone had pushed me out of plans that meant a lot to me after we had talked about them for over a month. It reminded me of my childhood when kids would leave me out of something because they thought I was too stupid or embarrassing. I ended up saying some things to that person that I now totally regret and it still puts me in tears to think about it!

This is why I have spent the last 10 years not having too many close relationships. Telling people about my Hydro and shunt and multiple surgeries, etc is bad enough. Most people know what P.T.S.D. is and that has such a negative stigma it's worse than telling people I have a seizure disorder which really freaks people out! I have even had friends tell me it's just an excuse for crying, saying things I don't mean or shutting down so easily. It doesn't give me an excuse not to have friends and be a hermit because I'm afraid a social situation will set me off either, it's just a matter of finding a balance.

So, P.T.S.D. isn't about people who have been in wars panicking when they hear thunder or having bad dreams in their sleep. There are many forms of trauma which means there are many types of P.T.S.D. and doctors are finding more every day. Someone's anger, crying easily or shutting down may because of something they are going through now or have experienced in their past. Maybe they just need someone to talk to instead of being yelled at or ignored. Having Hydro and a lot of health problems with P.T.S.D on top of it is a personal hell to say the least. Going to therapy helped but it's my family and friends who were patient with me that helped the most. I can probably count on one had how many there are but they mean the world to me!

By the way, if you look at the symptoms of P.T.S.D., one of them is difficulty falling or staying asleep. I'm finishing this at 4:30 am...while talking to Tim =)

What makes you happy? (Guest blog by Keyt Harrington)

The last few guest blogs I have done have been pretty grim so this time I thought I would talk about something a little more light-hearted!

For those of us with medical issues we spend a lot of time talking about it to everyone from doctors to friends and family. Honestly, my family wasn't really one to talk about it without making me feel like I wasn't going to make much of my life. It was early on my life, around 5th grade that I fell in love with photography. My parents didn't care much for it so on every vacation we took I became the one responsible for the camera. Because back when I was kid doctors always thought people with shunts couldn't go in airplanes, we always drove from Michigan to Colorado or Washington State which is where most of my mom's side lives. I didn't mind it for a few reasons; I absolutely love car trips, we got to see all sorts of tourist attractions and it was the only time my parents got along lol.

My 6th grade year I only went to school a few months because I ended up having 3 shunt revisions in a row. That was when I enrolled in a photography class and won my first award from the local paper that held a photography contest. My teacher told me at the end of the class that I had a real good eye which i thought was ironic since I was legally blind at the time!
Since the award I received from the paper wasn't such a big deal to my parents, I knew the teacher's praise wouldn't be either so I kept my love of photography to myself and continued to be in charge of the camera if we went anywhere, secretly using those moments to practice.

Fast forward 10 years or so, I had spent that time practicing on the animals at my sister's ranch, the children at our family's in-home day care and now I was having my own kids to take hundreds of pictures of. People were starting to notice I had a talent despite what my parents thought. I was told for years that it was something I should do for a living but I didn't think I was that good so I quit for a little while. I went to college the first time for a teacher assistant/sub degree and later for a systems analysis degree (computer programming). I also had many more surgeries and lost a few jobs because of it. I didn't really like those jobs anyway, the only thing I liked was taking pictures!

There was one photo though that changed my life. It was a picture I took of my daughter in her Easter dress when she was almost 3 in 1992 and a parent of one of the kids we had in our day care saw it. She said she really loved it and wanted to know if she could have a copy so I gave her one. I think about a week later I received a call from a man that owned a small photography business in town and he asked if I could be a "Second" at a family gathering he was doing a session at. I was about to say no when he said he would pay me $200 for the day. As a young, basically single mother of two toddlers, that was a lot of money so I agreed. I didn't find out until many years later that the parent who showed that man the picture was the man's sister!

Fast forward another...many years...I have since learned that with medical issues it's always good to have something you really enough doing. When I'm not feeling well and need to force myself to go outside, I grab my camera. When I need to cheer myself up, I grab my camera and find some kids or animals. I don't leave the house without my camera anymore, even my expensive one! In fact, it's a running joke in my house that my boyfriend does the run-down of things I need to grab: wallet, keys, camera! I can't even begin to tell you the moments I was glad that I had it with me!

Now I'm a little better at my craft and I have my own small business. I still find myself questioning whether I'm good enough to take a job but I will take the challenge. Animals and children are still my favorite things to photograph all these years later:

These are mine taken last summer. 

A client's daughter taken last fall

I have also had to convince myself I was good enough to take on other projects:

High definition resolution editing

Photo restoration of a friend's grandmother and uncle

I have only taken one photography class in my life and never took one for the last two. 

Now when I hear someone say "I can't do anything", I tell them if I can teach myself stuff, anyone can. I also taught myself how to crochet when I was 18, now I can make anything, like this:

I learned photography and crocheting all by myself. Now days people are lucky, they can watch tutorial videos on YouTube if they want to learn how to do just about anything, that's how I learned HDR and photo restorations.

In the words of Oprah, "Find something you like or that you're good at and run with it!". If you don't know what you're good at, ask a friend or family member what they think. Maybe it's baking cakes for special occasions or making jewelry for presents. Almost anything can be created and sold too! That flag sold for $145! Summer is almost here and you can find something to make a bunch of and take to an arts and crafts show around Christmas time to make money for gifts or just for some spending money! I have also learned over the years that something like crocheting is great to take my mind off any pain I may be having at the time..unless you're a perfectionist like me and rip out rows and rows of stitches just because I did ONE wrong! haha!!

Get to them before they get to you! (Guest blog by Keyt Harrington)

In the past few years a lot of attention has been given to bullies, what they do, why they do it and how to "fix" them. Unfortunately, not much attention is given to those who are bullied at the time it's happening, only when time has passed and the victim has had to spend a big portion of their life in therapy.

I spent my teens and twenties in therapy, but for various reasons. The majority of my bullies were my own family members because I wasn't the perfect child they wanted. That or whenever I was sick they thought I was faking it or looking for attention. Sure, I'm going to go up to a neurosurgeon and say "Hey, would you shave off all my hair, cut open my head and put plastic parts in it just so I can get a little attention around here?". I don't think that would work.
One time while in family therapy the doctor asked my dad why he seemed so distant to me. I'll never forget his exact words: "Because I wanted a normal child, not one that would cost me thousands of dollars to keep alive. I have better things to do with my hard earned money than that!". Yup, that's what I lived with!

Don't get me wrong, I had my bullies in school too. Not many because there's one important lesson I learned early on by having a messed up family; act like they don't bother you. You hear it a lot in discussions about bullies but it really does work! I learned some tricks by watching comedians on tv (this was long before YouTube!) and practicing in the bathroom mirror.

Here are some real examples of things that have been said to me and what I said in return:

Bully: "You're stupid!"
Me:  "At least I know I have a brain, I have pictures of it. Do have any of yours?"

Bully: "Everyone is smarter than you!" (said to me by my 12th grade English teacher!)
Me: "Oh yeah? Not everyone has a pump in their brain making it bionic!"

Bully: "What happened to your hair, did it catch on fire like Michael Jackson's?"
Me: "What happened to your face (pointing to her zits) did you fall in a rose bush?

Dealing with bullies is all about taking them by surprise. Laughing at and teasing a bully in return isn't easy but in almost every case they stopped teasing me as much or quit altogether. Of course a shy person will have a difficult time standing up to a bully in this way so a little practice with someone they know might be in order.

Most bullies act the way they do for two reasons: one is lack of knowledge. They may not understand how much it hurts the person they are attacking or, if that person is disabled they may not know why. Like with me, I don't look sick except for the times I was missing hair or had seizures in class. The other reason is they may have been bullied themselves so they strike out.
In 5th grade my teacher set up an assembly where I got up in front of the whole school with my mom and my teacher. She asked me questions about my hydro and my shunt and I answered them while facing all of the students!! I even went there with an IV bag and an old shunt for props (most docs will give you your old one if you ask for it!). At recess that day my biggest bully, Greg came up to me crying and apologized for being mean to me!! In middle school I had a really great counselor who brought me and a bully into his office to have a chat. It gave me the opportunity to explain how much his words hurt and to tell him why I did the things I did.

Believe me, even at 43 years old words still hurt me. For example, even when I act silly on purpose and someone says "That's retarded!", I get the heebie jeebies! They may use it as a saying but that word shouldn't be used in any situation! Yes I'm slow, can't remember anything from one hour to the next and I stutter. However I am a functioning human being...with feelings...no different than those with less physical or psychological abilities than me! I have learned that those who want to act like children and bash and belittle me are not worth my time and I completely remove them from my life if I can. If I can't then they get the tried and true silent treatment and they don't hear from me unless it's absolutely necessary.

I'm sorry but the walking away from a bully thing that my parents always told me to do doesn't always work. Using a little comedy or explaining your situation does. In today's world it's a little easier with social media because it's easier to hide behind a computer and say what's on your mind that you couldn't say in person. Granted, it may not work if you see your bully every day like if you were in school. A few times I have been known to send emails to the people that were hurting me (as an adult because emails pretty much weren't in use when I was in school lol) and it did work. It might take a little help but there's almost always someone around you who is willing to help. If you can't ask anyone for help, go to a search engine and type in something like 'letters to send to bullies' and you will find some examples!

Now, all of that was speaking to those being bullied. Before I end, I have a couple of things to say to those who bully. Some day you may grow up and find out that person you are picking on is seriously sick, dying or God forbid, dead. Do you want that on your conscience? Do you really think picking on someone makes you a bigger person? Well I have news for you. It's rare that a bully doesn't say the wrong thing to the wrong person and not get hurt at some point. Just like some people who are bullied commit suicide, well some bullies are killed because of what they say. This goes for kids AND for parents!! Think of school shootings. Almost all of the people who did the shooting were bullied at some point. So, which would you rather have, a little temporary fun picking on someone or a bullet to your head? Frankly, I prefer keeping my mouth shut so I can live!
Oh, and you may think everyone likes you because you have a ton of friends? No, they're friends with you because they're scared of you and they feel like they don't have a choice. That's not friendship, dude, that's survival!!

Hydrocephalus and autoimmune diseases (Guest blog by Keyt Harrington)

Hello! My name is Keyt (Kate) Harrington and Tim has asked me to tell you a little about my story.

I am 43 years old and it is believed that I was born with hydro, but sadly it wasn't diagnosed until I was 5. I spent my early years with terrible seizures, jaw and mouth issues, medication allergies and countless emergency room visits and hospitalizations. It wasn't until I was 5 years old when I had my first bought with cerebral meningitis (I've had it 3 times!) that doctors finally discovered why I had been so sick.

Since then I have had 20 shunt replacements or revisions and had my gall bladder, appendix and right kidney removed plus a full hysterectomy. I have also had multiple surgeries on my feet, mouth and several other exploratory surgeries.

All of that, believe it or not is not the worst of my battles.

Approximately 7 years ago I began developing strange thickness and curving of my fingernails. They didn't hurt right away but as time went on it didn't matter what I bought over the counter, nothing worked. About a year after that started, my scalp began to itch, and as I scratched it I had flakes fall like it was dandruff. I tried dandruff shampoos but it made it worse. I couldn't wear dark clothing, wear hats of any kind or use most shampoos. That was it, I gave in and asked my doctor. She looked at my fingernails and my scalp and just said it was an allergy.

It has been said often by those of us who battle hydro or any long term illness that we know our bodies better than most doctors. I knew this wasn't an allergy but my doctor wouldn't look into it further. That was when I surprisingly gave up too. I let it go for another year, didn't talk to anymore doctors and fell into a depression as my fingernails kept swelling and my hair began to fall out.

Then one day I woke up after only a couple of hours sleep because I was itching so much and I decided I HAD to do something. I had spent a lot of time reading about skin conditions and remembered that sunlight could help. I was a guard at the pool at my apartment so I thought it would be perfect! I had nothing to compare myself to all those photos I saw online except for my nails because I had no idea what my scalp looked like! So I asked my neighbor's husband if he could shave all my hair off. He looked at me funny but I told him it wouldn't be a big deal because when I was little, neurosurgeons would shave off all of my hair instead of just the area they were operating on like they do now!

The day Mike shaved off all of my hair, his wife, Justine invited a bunch of our neighbors and we grilled some burgers, had a few beers and made a party of it!

But...once my hair was all gone, I saw Justine crying. When I asked her what was wrong, she handed me a hand mirror. Before I even looked, I took a deep breath. I knew I was going to see something bad, but little did I know what I'd see!

It's called plaque psoriasis. Those little white things raise and sometimes fall off on their own. I eventually developed a habit of picking them off because they would pull my hair and really hurt! Plus notice how it's very close to my shunt scar? Well, this was 3 years ago. Not long after this photo was taken it did creep onto my scar and down my neck. I just assumed I would have to live like this forever.

That was until I met my boyfriend, Aric 7 months later. When we met I barely had any hair. He said it didn't bother him, but what did was the fact that I was so miserable. He called around and found a different general doctor for me and insisted that I make an appointment. I had already spent 2 years not seeing any doctor so I didn't have any interest, but he told me I already had enough going on that I didn't need this too. So I made the appointment and joked that the poor doctor will kick me out because I had so many health problems!

Dr. Coombs was shocked that one person could have as many health problems as me and still be alive or not in some mental institution from major depression! She immediately sent me to a dermatologist but after a few months there and only receiving a few injections, I wasn't happy. By this time I could barely walk, lift, bend over or anything and she knew it had to be something more than just psoriasis. She decided to send me to a rheumatologist because they deal in both skin and bone conditions. After a couple of blood tests Dr. Dinning confirmed  psoriatic arthritis. I cried because finally someone believed me and confirmed what I had known for 7 years!

Basically, psoriatic arthritis is psoriasis and arthritis together. It's much like other forms of arthritis but it can often be worse because of the skin irritations. It's an autoimmune disease. That happens when the immune system mistakes some part of the body as an organism and attacks it's own cells. Anyone at any time and any age can get an autoimmune disease, but usually people who have had surgeries (even just one!) or some other disease (trauma) will develop an autoimmune disease. Psoriatic arthritis is just one, there are other more common ones such as celiac disease, eczema, lupus and multiple sclerosis. 

Unfortunately since my official diagnosis last year I've gotten worse. It's harder to walk, I can't stand for long periods and my sleeping patterns are worse. In March, my doctor decided it was best that I try infusions. As soon as he said that word I cringed. Not because the idea of infusions bothered me, but the needle did. I'm not scared of needles, but when you've had as many surgeries and hospitalizations as I (and many of us) have, your veins begin to fight back!

This tatt gets a lot of attention. When in an emergency room I've had people come from all over the hospital to see it or people take photos with their cell phones!

The first two times I did an infusion it took 6 tries each to get a needle in a vein. Since I had to have them regularly (and will have to for the rest of my life!), my doc sent me in for an infusaport. It's like a PICC line but it's under the skin and can stay forever.

Now all it takes is a poke into a small little port under my skin and I don't feel a thing!

The infusions don't completely take the disease away. In fact, after I began them, I developed raised spots on my legs.

These are just as itchy and uncomfortable as the ones on my head! I have about a dozen more since this picture was taken a month ago. Wouldn't you know they develop during summer too! But, here's how I look at this; I'm alive. I can't work anymore but I have a wonderful boyfriend whom I live with in a home that's paid off. We build things to sell and make money plus I get Social Security so it's not all that bad. We have a small farm with approximately 80 animals so they along with Aric all keep my spirits up. I try to look at what I do have instead of what I don't anymore.

Plus I have wonderful friends like Tim who allowed me to tell my story and spread the word that things could be so much worse!