The difference with growing up with epilepsy and acquiring it as an adult.

The difference with growing up with epilepsy and acquiring it as an adult.

Is there a difference between growing up with epilepsy or being diagnosed as an adult? I wasn’t diagnosed until later in life. I am not saying one is better than the other, it is epilepsy, we all have to deal with it. It’s a struggle no matter your age. I guess I’m wondering if the way we respond is different at other points in a person’s life.

I will start with my experience, simply because it is what I am familiar with. I had my first seizure at 44 years of age. I actually had two seizures before the neurologist found an AVM(Arteriovenous Malformation) in my brain, but still denied I was having seizures. The neurosurgeon I was sent to in another hospital said I was definitely having seizures and immediately put me on an anti-seizure medication and told me to stop driving. My AVM was removed by craniotomy and the assumption was my seizures would stop and I would be weaned from the anti-seizure meds. Over two years later the seizures continued, the anti-seizure medication was upped, a second medication was added and also upped along the way. I don’t know what the first two seizures were because I was alone, but I have only had one tonic-clonic seizure. The rest have been focal seizures. I think what bothered me over this time was epilepsy was never mentioned to me. I finally had to ask the questions myself. I was contemplating looking for a new job, so I decided to send a message to my neurologist. My question was something along the lines of “I want to look for a new job, what should I tell people about these seizures that I am still having? Is it just something related to the brain surgery? I just want to make sure I’m using the right terminology when I talk to people.” The response I got from the neurologist office was kind of upsetting. It was very positive about looking for work, but this was kind of their response “Yes, you should absolutely apply for new jobs, good luck with that. You have two diagnosis. The first is your AVM and the second is epilepsy secondary to the AVM.” Wow, why had that never been shared with me? It made me wonder if it is the fact that I am a middle aged woman so it is just assumed that I should already know what is happening to me. In that instant I could just feel all of my hopes kind of die.  I thought I would be driving again, I thought I could move, I thought I could find a new job with ease, I thought I could plan a vacation on my own. I felt so many things just disappear. So many times I have wondered if my life would be different if I knew I would end up with epilepsy when I was younger. Would I have moved into a small, rural area with no public transportation? Would I have taken vacations knowing how to be more prepared for myself? Would I have looked for a job that I truly loved instead of taking a job that I needed just to pay the bills? I have been wasting my days now just trying to get through things. After each seizure I have to go six months seizure free until I can drive again. I went 353 day without driving and was so excited to drive to work myself only to have a seizure a few weeks after that. I am again, relying on rides for at least another three months. My job is 20 miles from my home. Had I been prepared for this, I would have lived in a city. My family is supportive, but I don’t think they really understand what I am dealing with. I get a lot of, you’ll be fine, just be positive, call me if you need anything, I’ll take you anywhere you need just ask, have you had anymore “spells” lately. I do a lot of sitting at home, alone, because it’s the simple fact that I always have to ask. I hate being a burden and the more times I ask and people already have plans, I do start to realize I am a burden. If only epilepsy had come along when I was young.

My thoughts of being a young person with epilepsy are so much different than that for an older person. Your parents, siblings, family members and friends already know you have epilepsy. They know you could have seizures anytime and they know how to react for you. You are supported and pushed to be the best person you can be. You know what could happen to your body at anytime. I feel like you can plan your life. You can live in a place with public transportation so you can get to places without constantly asking friends and family for rides. You can have a better idea of what kind of job will work best for you. I just feel like you can have a more positive outlook on life. Your doctors would have already share information with you or your parents when you are first diagnosed and understand what your life could be. You would actually be diagnosed, there would be no asking. I follow the support groups online and there are so many parents that support their kids and have the ability to help plan lives for their children. That makes me so happy for these kids. These are all just thoughts for me because I can’t know what their lives are like, but it feels like there is possibility for them. Although I can’t lump everyone into the same slots, I know that’s wrong. There are those that don’t make it through childhood because of epilepsy. Being somewhat new to this I am trying to learn as much as I can.

As an adult, I’ve been very negative on being a newly diagnosed epileptic. I just keep waiting for the seizures to stop. They go months apart, but still happen enough to affect my daily life. I probably have it a lot easier than so many. My first thoughts have gone to what my life could be like if I had known I would have epilepsy before I left my childhood home and embarked on adulthood. I know my life would be different. I’ve spent more time thinking it would be easier if I had known. I’m currently trying to figure out how to move forward, but I also want to spend time learning about those that have lived with it through their entire lives. What has their struggle been? Have they had to give up dreams they wished for? Are they as negative as I am? Life with epilepsy can be difficult for everyone involved, I hope to get some insight on all people affected and am not so ignorant on my thoughts.

Losing who I was and trying to figure out who I am now.

Losing who I was and trying to figure out who I am now.

My health is a constant worry for myself. Almost two and half years ago I had my first seizure. I was alone and unconscious and I noticed I bit my tongue enough to bleed, so I was pretty sure I had suffered a seizure. When my husband got home he took me to the ER. The ER doctor did some blood work and checked me out a bit and found I was anemic. Her decision was that I had passed out and put me on some iron pills and sent me home. A month after that, while driving home I suffered my second seizure. Luckily I knew something was happening and I was in the process of pulling my car over to the side of the highway. That was my last recollection until I woke up in an ambulance, my car was in the ditch. As with the first seizure I was alone so there was no one to witness what had happened and I was unconscious so there was no memory. I was pretty sure it was a seizure, I just didn’t know how to tell doctors they were wrong when they kept telling me I was passing out.

Since I had suffered two instances of unconsciousness in two months I was sent to a neurologist. He had a short EEG done on me and was happy to let me know I didn’t have epilepsy. Apparently that was good news, but what was wrong with me? He decided I should have an MRI and a three to five day EEG done at the hospital. Again he was happy to let me know I didn’t have epilepsy, but the MRI was able to show an AVM(Arteriovenous Malformation) in the left temporal lobe of my brain. The neurologist didn’t have a lot of knowledge on AVM’s so my records were sent to another hospital. That hospital then sent my records to another hospital with a neurosurgeon. I was sent to see him. There were three options for my AVM, wait and watch for possible bleeds or rupture, a form of radiation that could take up to five years to hopefully remove the AVM, or a craniotomy to remove the AVM. I went with option three, a craniotomy would remove the AVM immediately and there wouldn’t be constant worry. The scary part of the craniotomy was the fact that I would have to be awake during parts of it. Because of the location my speech had to be tested so they could successfully remove the AVM without affecting my speech. I do remember parts of the surgery and I wish I could forget them, but once it was done the AVM was gone.

I thought my life would simply go back to normal after surgery, but that’s not what happened. My brain surgery was not like watching an episode of Grey’s Anatomy when the patient wakes up, thanks the surgeon and goes home. I expected to have my surgery, my world would be normal again, get back to work and put the AVM and surgery behind me. What actually happened was different. I was exhausted, I had staples in the shaved area of my head, I had trouble with my speech and memory and I ended up having more seizures. They started speech therapy while I was still in the hospital and continued for another month or so when I returned home. It really is a lot better, but I have a very mild form of aphasia. My memory improved, but my short term memory is still a problem for me. It isn’t terrible, but I struggle enough that I write notes all the time when I receive information so I don’t forget. I am now told I have epilepsy because of the continuation of seizures for the last two years. I am now on two types of anti-seizures, but have only driven a few months in the last two years because of the seizures. My life has been affected in more ways than I ever thought it could be. Who was I and who am I learning to be?

I always considered myself to be an extremely independent person. I had no trouble asking for help when I needed it, but it was easy for me to deal with things on my own. I have a spouse and an adult child who are there for me, but I could handle whatever troubles came my way. I have always been a bit of an introvert, I love people, but I also need by alone time. I live in a small town and work in a town several miles away. My shopping has always been done in the town I work in because there isn’t much shopping available in the small town I live in. Driving to my job and home was a nice way to have my own quiet time, to just have my own thoughts with no need to converse with people and a good way to decompress after a long day of work. My job as an accountant is full of stress that deals with a lot of brain stress. A good memory is needed to deal with all of the information thrown my way. Never in my life had I thought my world could be thrown on it’s end after my surgery. I’ve dealt with injury and surgeries in the past, but things always just went back to normal. This is completely different, the process hasn’t been the same. I don’t feel like myself anymore. My independence has been taken from me. Because of the epilepsy, I haven’t been able to drive for the majority of two and a half years. That easy, peaceful twenty mile drive to work and back home in the evening has become a necessary ride from a family member or friend when they are available. Rural areas don’t have public transportation, so it really is asking people for rides, everywhere…doctors appointments, shopping, a movie, a restaurant. I have become dependent on people for everything. Adding the mild aphasia to the epilepsy have really started to make me so much more isolated. I have begun to find myself only talking to people that know me well because I can feel the anxiety coming. I worry I could have a seizure and people won’t know what is happening, but I also have trouble finding the words I want to say sometimes. It’s something that makes it nearly impossible to find a job that relies on talking to people, either in person or on the phone. For the most part, I can talk to people, but it’s those anxious moments of losing a word I am trying to remember that made me stop talking to people that don’t know me well. Even family and friends don’t really understand what I struggle with. I look so normal that people don’t really remember of understand that I really have issues. That is something I think of every day and adds to my anxiety. My hope is to find a new job because my current job is just causing more stress that is worth, but between the epilepsy, aphasia and short term issues it’s so hard. I need to find something I can handle, but also one that has good health insurance. I also don’t have the confidence I had two and a half years ago.

So, now I am to the part where I am trying to figure out who I am now. I have spent the last two years trying to be the old me. It’s not going to happen and I know I need to move on, that’s the struggle. I sit at my house every night and weekend trying to figure out who to become. I can’t drive anywhere, so I have plenty of time to think. I feel like I am becoming such a negative person and if I continue this way, the rest of my life won’t be worth anything. What is the point of being on this earth if there is nothing to look forward to? I have begun to understand why there are those that give up and I don’t want to become that person. While I haven’t had the Ah-Ha moment of what will get me through the rest of my life, but I will continue pushing forward, getting my rides to work until I find a new job until I can find a new one. I will continue pushing my brain in the hopes things will improve or at least make me feel comfortable enough to meet new people. I will keep writing(and hopefully get a little bit better), in the hopes I start to make sense of my life. While I haven’t figured out who I am yet, at least I am understanding who I will not be able to be again. I just have to keep living with that and keep going.

Healthcare and insurance in the US.

Healthcare and insurance in the US.

I am so frustrated lately with our healthcare system in the United States. I don’t think a healthy person gives much thought to health insurance, other than it is there if you need it. Maybe I’m giving less credit than I should, but when I was a younger and healthier person, I simply paid my premiums and waited for the day I might get sick or go to a doctor for a check up. I never really gave much thought to what came out of my paycheck each week because someday I might have an illness and all of this insurance I have been paying will take care of my hospital bills. If I left my job, I could simply sign up for a new insurance plan and do what I have always done, pay for my premiums and wait for the day I might have a need for them.

I had a child and like I assumed, my insurance kicked in and paid what it should. I had to have a c-section so I was in the hospital for a few days, but I didn’t worry or give it much thought. That is why we have insurance. I went on with life.

Four years later I had my first major health scare. I had an unknown ectopic pregnancy that ruptured before they got me to the OR for an emergency surgery. That itself wasn’t the scare, but the blood clot found in my heart several weeks later was. Open heart surgery to remove the infection and clot and an angiogram to place a stent in the superior vena cava to open another blockage now put me on blood thinners for the rest of my life. Again, insurance paid what it should and I went on with life. Health insurance wasn’t a major thought at that point in time. I was 29, so still young and basically healthy. In my own ignorance I never really put much thought to the need for health insurance if I lost my job or had a pre-existing condition that could be an issue.

Two years ago I started having seizures. An MRI showed an AVM(Arteriovenous Malformation) near the left temporal lobe of my brain. I was sent to see a neurosurgeon and we decided the best option was to have an awake craniotomy to remove the AVM. This would allow them to test my speech during the surgery and if all went well the AVM could be taken out and I would go on with life. The surgery went fairly well and the AVM was able to be removed, but unfortunately, I have been left with some minor deficits. Minor enough that I can still work, but major enough that I have some difficulty getting through life as who I used to be. I have some memory problems, some mild aphasia and I still have seizures. These problems make it difficult for me to go out and find a new job. This was probably one of the first times I really started to worry about my health insurance. It’s almost embarrassing to realize that.

I sit and think about this on a daily basis. It causes me stress and probably adds to the issues I have. My job is a stressful job and I want to find a new one. Unfortunately, I have enough issues that make it difficult to take just any job that is out there. I have trouble with my memory, I need a job that allows me to take notes and ask questions to make sure I understand with I am being told to do. Quick response isn’t easy so customer service is not something I can do. The mild aphasia makes it difficult because I lose words. Anomic aphasia would be the version I deal with, which can be frustrating because most people don’t notice I have it because I find a way to work around it. The most difficult for me right now is my epilepsy. Every seizure adds six months of no driving. Living a rural area, like I do, makes finding a job hard because I have to be able to get there. I don’t have to share the fact that I have epilepsy with an employer, but at the same time I don’t want to have a seizure at work and have no one with knowledge of seizure safety. So with all of the disabilities that I deal with, but with the capability to work, I constantly worry that I will lost my job and not be able to find a new one. What do I do if I lose my insurance?  I have to take anti-seizure medications and blood thinners. I could never afford them if I didn’t have insurance. Appointments with doctors would become too expensive. When you are a person without an unending wallet of money, your health becomes a constant concern.

Our healthcare seems to be more about big business rather that our health. When a doctor tells me I need a test, I assume I need the test. However, it often has to be approved through insurance. How is an insurance company more capable of deciding I should have a test over my doctor, that has been to medical school. There are other countries that have healthcare through a tax so everyone has the ability to receive healthcare. I don’t understand why we don’t look into some form of healthcare in our country. I think it comes down to money and what people are willing to pay. I have seen comments on social media showing how people are unwilling to understand and make a change to our healthcare system. Most healthy people put blame on unhealthy people. They seem to think every unhealthy person had a choice in their health problems. Eating better and exercising doesn’t change something a person is born with. They still have health problems and need the care. Insurance is a business and I don’t feel that business should be how our health is dealt with. A person’s finances should not be the decision on their ability to get care. Compare a celebrity or athlete to the average person. We see and hear about all of the care that they get for their illnesses. Does the average person receive that care? Not if you don’t have the finances to pay for insurance. I am in the process of sending letters to my congress people in the hopes that our healthcare becomes a bigger priority. I hope you all do the same.

The Difficulty Of Making Changes…

The Difficulty Of Making Changes…

I am not even sure how to title this post yet. I have so much stress now at my job since my craniotomy nearly two years ago. I can still work, but I am not at 100% and I really do not think I will ever be. Unfortunately there are changes being made and most of them come in the area that I work. They let one employee go and another was able to find work with another company. So, that is now leaving more work to the remaining of us in the office. Add in a cut in hours so the company could cut our pay, I am in constant stress.

If you have ever had epilepsy you will know that stress can lead to seizures. As much as I want to get back to being able to drive I cannot because of a seizure last month. I have five months left of no driving. Since the turmoil at work I am in constant worry of another seizure. I have been looking for another job, but again that puts more stress on me. Then I knew I lost the job because during the last bit of the interview they shared I would work part of the time from another office in another town. That was when I shared the epilepsy, I would have to find a ride to their second office in another town.

I also deal with very mild aphasia. Anomic aphasia makes you lose words, often in the middle of saying them. I know what they are in my mind, but I cannot find them when I try to say them. I do a lot of describing to try to get back to that work. It is another difficulty in finding work. I avoid work that involves a lot of talking in the public. In my office with the coworkers that have known me for years I can do a lot of  describing and “you know…” “it’s that thing that you use for…”. I have to find work that keeps me in a smaller environment.

If things are expected too quickly or if there is too much going on around me I have a hard time getting the work done. When I try to talk to someone on the phone and everyone in the office is talking I cannot hear the person on the phone. If I am talking to someone next to me and people start talking around us I lose their voice in the rest of the noise until I can see their face and focus on them. I have been told to try working in retail, so it becomes obvious I cannot get others to really understand what I am dealing with.

Short term memory issues really makes me worry about finding a new job. I am comfortable when I am now because I know how to do my job. I do a lot of note writing so I do not forget to get things done every day, but who will want to hire someone who cannot remember things.

Benefits have now become something to worry about. My current job offers health insurance and if I look for new work I have to know that I will have good insurance. Unfortunately when you are interviewing for a job the last thing you are supposed to ask is their benefit package. Your concern should be about the interest in the job and what you can bring to the company, not what they can bring to you.

I have been looking at some classes online that will give me some more skills when it comes to work because I think I want to move into an entirely different field, accounting is a stressful field, so I guess we will see how it goes. Change is difficult for everyone, but when you have health issues it adds a completely new perspective to it.

How Do You Pick Your Disease When You Have So Many…

How Do You Pick Your Disease When You Have So Many…

There are walks, support groups and fundraising for every disease there is, but how do you even decide which one is more important? I should not really ask which is more important because all of them are, but do you ever identify more with one or really know if you fit into that disease?

As a teenager I went to a routine appointment for a sports physical for school. The doctor noticed I had a heart murmur. I was sent to another doctor and was told it was a mitral valve prolapse. A teenager does not worry much about something like that. That still has still been watched, but has never been much of a major issue. Someday I may need to have the valve replaced.

When I was nearly thirty, I had a blood clot in my heart, probably from an unknown ectopic pregnancy that ruptured by the time I made it to the OR for emergency surgery. I ended up having open heart surgery to remove the infected clot. After a PICC line in my arm for six weeks of antibiotics a blockage was caused. I had to have an angiogram to have a stent put in. I see my cardiologist annually to make sure my stent stays open and all is good with my heart.

At forty-four an AVM(Arteriovenous Malformation) was found in the left temporal lobe of my brain after having two seizures. An awake craniotomy allowed the neurosurgeon to remove the AVM, but I am now left with epilepsy and still have a mild form of aphasia. This all happened two years ago, so I’m still struggling to come to terms with all of it.

The question I end up with then is what should I share? What support should I look for? I do not like being the person that just sits and lists my health issues, but I also never want to ignore one of the them because they are all part of me. There are reasons I do not go out with my friends anymore. There are reasons I have trouble coming up with words at times. There are reasons I avoid rooms with too many people and noise. I want to talk to others that have the same problems, but at times I feel like I have too many problems and I will never make sense when I share with others.

It is hard to join groups because my issues never really seem to fit. My aphasia is very mild, but it is still there. Unfortunately the only group in my area is for stroke patients. I did not have a stroke, but I still struggle with some of my speech. My seizures are new to me, but they say there have been multiple so it is epilepsy. I would have to drive at least an hour to join a group, so that does not work. My heart issues do not fit the heart disease groups because I had a blood clot. My heart surgery was to remove the clot. I am on blood thinners for the rest of my lift because of the stent and that was not even because of heart disease, it was because of more blood clotting due to the PICC line. I just never seem to fit.

I want to be a part of things and I want to make people aware, but I have a hard time because I feel like I would be on a non-stop awareness tour. I have pushed enough friends away, I do not want to lose more because of never-ending illness alerts. Facebook groups have become my go to place to share and ask questions. It helps, but is not quite the same of that face to face sharing. Some groups are wonderful, some are simply a lot of negativity. Although I feel like I have just done the same.

Maybe I will work it out and figure out where I fit. I do not even feel like I fit the title of this post, but my mind was not really in the right place once I got going.

Is Therapy Worth It…

Is Therapy Worth It…

I wanted to attempt some therapy because I get so nervous about going places that I have not been to since my craniotomy. I attempted it a year ago, but I was still having seizures and finding a ride to appointments became a hassle. I only made it to two sessions, but I do not think it was going to work out with this particular person. They mentioned more than once that they had a relative that had a TBI(Traumatic Brain Injury) so at first I thought they might be able to relate to what I was going through. After two sessions I began to worry that they were comparing me to their relative. Every brain injury is different, so there should be no comparison to another person’s injury. I probably would have left that therapist if I had continued with sessions.

After a year I realized that I was not having any change with my anxiety, but I also never had to attempt going places by myself because I was not going places on my own. I could not drive so I always had someone with me. I found myself letting them walk in before me and do the most of the talking before me unless it was a doctors appointment or places they were expecting me. So, I decided to try therapy again.

I did not want to share this with my family until I had worked out some of my issues, but of course a seizure happened and I needed a ride to my first appointment. My mom gave me a ride, surprising without asking me questions about it.

It felt good to share things that I do not tell many people. This session was mainly answering question that the therapist asked me. I thought anxiety was my main issue, but sharing questions also showed the therapist there could be some depression. I have assumed that could be an issue, but after sharing some issues that is probably true.

I am still unsure of how I feel about talking with a therapist, but learning there are some obvious issues, I want to try. I need to be able to function in order to move forward with my life. Life should not be suffering through the day in order to make it to the next one so you can just do the same thing again and again and again.

This has not been a great post, I am still not sure if I am sharing too much or not enough, but I will continue to work on it.

The Frustration Of Epilepsy…

The Frustration Of Epilepsy…

Do you know what Epilepsy is? I thought I had an idea. I assumed people were born with it. They fell down to the ground, had a seizure and then they got up and went back to things after it was done. I remember a girl in high school having a seizure. I did not see it happen, but I heard about it and saw her later. She seemed fine and that was it. It never really dawned on me what a horrible disease it is.

I did not have my first seizure until I was forty-four years old. It was all related to the AVM(Arteriovenous Malformation) that I had in my brain. After the craniotomy to remove the AVM, I thought the seizures should have stopped. Mine did not, the seizures have continued. I am now on two anti-seizure medications and I was so happy because I finally went six months seizure free over this two year ordeal. That meant I could drive again. In the last two years, I have driven for about six months of that time. During those six months I really should not have been driving for about four of those months. At the time though, I just really did not get it. I was being unsafe and no one gave me that information. I went almost a full year and finally hit my six months seizure free mark and I started driving almost a month ago. It meant everything to me to have that freedom again.

I have mentioned that I live in a very rural area, this means no public transportation. I live twenty miles away from my job. My son lives in a small town six miles from my town. Even my close family live in another town twelve miles away from me. So, the need to go anywhere requires a ride. The fact that I was able to get in my car and drive to work was amazing. My son invited me over to his apartment for supper and I was able to go, by myself. I have had three amazing weeks. Maybe things were going too well and someone decided I needed to be put back in my place. I will still never understand what I have done wrong in my life, but I probably had a minor seizure at work this week.

I left a message with my neurologist, who is three hours away from me. I had not heard back for a few days until I received a message from his nurse. He was out of the office for the week, but my message was forwarded to another neurologist. Their response was that their concern was it sounded like I may have had a seizure. Their advice was to up the dosage on one of my anti-seizure medications and of course, do not drive until I am six months seizure free. I was in tears. I could not do that again. I think my mind was not in the right place. I called my son. Probably not the smartest thing to do because most of the things coming out of my mouth sounded like I was ready to end things. Maybe that was why I called him. I knew he would help me calm down. I do not want to end, it just felt pointless. I just want to be more like who I used to be.

I took his advice and sent a message back to the nurse. I would prefer to talk to my neurologist when he got back. I am sure he will tell me the same advice, but at least I will hear it from someone that knows my history. I want to ask questions and make the decision with someone that I feel wants to help me rather than just throw more medication my way and hope it sticks. Did I really have a seizure this time? I do not know and that was my reason for contacting my neurologist after it happened. My AVM was on the left side of my head, so I had my brain surgery on that side. My sinuses are flaring up on that side. I have a couple bad teeth that I am trying to have worked on, also on the left side of my head. The odd sensation I was having was on that side of my head. Am I in denial about a seizure? Maybe, but I want to know before I just go the route of more medication and stop driving again.

Epilepsy for me is so frustrating. It happened so late in my life that I never even gave it a thought. It was something that was never really explained, until I asked. I always want to know what is wrong with me, but I should not have to ask. That information should be given. Doctors deal with a lot on a daily basis so I am sure they assume patients understand what is going on with their bodies, but they should be able to offer information or support groups. The word Epilepsy never came up until I asked them what to call my seizures. Am I just that dumb, I never thought I was. I am tired of the fear of having yet another seizure. I am tired of waiting six months to have a life and then have it taken away, yet again. I want to know more about Epilepsy so I can figure out how to live again.