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.

Stepping Out Of The Comfort Zone…

Stepping Out Of The Comfort Zone…

I did something I have not done on my own in a year. I went into a store by myself. I had not been able to drive because of seizures, but I finally went six months seizure free. I have been driving to work every day, but I have been too anxious to do any shopping alone. Some of my trouble comes from the fear of having a seizure when I am out alone. I also have trouble with mild aphasia. I think I am afraid I am going to run into someone I know and they will want to talk to me. My speech is fine, but I still lose words when I am trying say things I have in my mind. Physically I look fine so people I have not talked to in the last couple years will not know I had brain surgery. Too much noise is overwhelming.

Anyway, I got a call from my son when I was at work yesterday. My son is an adult and does not live with me, but I will try to explain why he called me for help. We live in a very rural area. I live in a small town about six miles away from the small town my son lives in. He works in a small town about sixteen miles away from his small town and I work in a larger town about twenty miles away from my small town. He needed a black shirt because the one he had ripped and he was going out of town. Since he was at work he could not get to the large town I was in. That town is the best town to do your shopping in our area.

I got the phone call from my son. He is very aware of how much trouble I am having going out in public on my own. He asked how I felt about going to a store by myself. My answer was a quick “I don’t know.” He explained the situation and me being the mom I am, I wanted to help him. I always want to help him. I was already stressing, but I told him when I got done at work I would head to the store and let him know how I was feeling when I got there. There were not a lot of cars when I got to the store, so instead of calling him first, I walked into the store. There was some music, but it wasn’t too loud. There were a few people, but not too many. I walked to the shirts and found what he wanted and sent him a text.”I’m in the store.” I got a text back from him. “Niiiice!” It is not a big deal for a lot of people to walk into a store, but I felt like I just had a big win. I finished the shopping and quickly got out of the store.

My anxiety is very minor compared to what others deal with on a daily basis, but it is still something I have trouble getting over. I am able to go to work because it is comfortable, I am able to leave my house, but I have trouble doing things on my own. I was always an independent person before my brain surgery and had no trouble going places by myself. I hope I just made my first step to getting some of that back. My hope is that the therapist will continue to push me. I know forcing people is not the way to make someone better, but for me, a call for my son gave me a little nudge to at least try. Do I want to drive into town and go shopping right now? Absolutely not, but at least I made a start. I think stepping out of my current comfort zone made me think back to what I used to be capable of. It may be a slow process, but I want to continue to make it happen.

Anxiety And Your Health…

Anxiety And Your Health…

How do you get over anxiety after major health issues?

I have always been an anxious person. I always say I am an introvert. Being around friends and family, going out places is always fun, but then I need my alone time. There is the need to stop talking and thinking and just decompress.  It is easy for me to spend a day with no one. The trouble I have always had has been meeting new people and going new places by myself or without someone that is more outgoing. I leave the meet and greet to the other people and I join in after the fact. I would get nervous days before the event, just trying to plan out things that could happen and how I should deal with it. What if I said something dumb or someone asked me a question I did not know how to answer. What if I could not find the bathroom or if I dropped my food. Chances were none of those things were going to happen, but I had them planned out in my mind. This was me before brain surgery.

After my craniotomy to remove the AVM(Arteriovenous Malformation) in my brain I did not know what to expect. I knew recovery was going to take a while as I went to speech therapy to help get my speech and memory better, so I started to avoid people. I had trouble finding words I wanted to say and it was hard for me to understand and remember what others were telling me. That really started to crank up the anxiety. I would not talk to people on the phone because if I could not see their face I could not always understand what they were saying. I would just tell people to send me a text. It made it easier for me to take time to understand what they were saying and allow me time to respond with an appropriate comment. I was constantly nervous when I had to be around people because I just knew they would not understand what I was dealing with. I did not let people come to visit and I rarely went to see anyone other than my immediate family.

I had gone through my Family Medical Leave and I knew I had to return to work. Physically I was doing well, other that being tired, so I knew I had to at least attempt it. Now that I look back, it was probably the best for me, but at the time I was in constant stress. I was happy to see my very close co-workers, but I had constant fear that someone was going to call my desk and assume I was ready to jump back into work. I asked for people to email me instead of calling. It was tough because I was still dealing with aphasia and my short-term memory was making it hard to do the work I used to do. I started back part-time and after a few weeks I made the move my normal full-time hours. I do not have definite answers, but I feel like the stress of work started the seizures again. So now not only dealing with aphasia and short-term memory troubles I worried daily about having a seizure. I started to consider looking into disability because of the how I was feeling every day, but as I looked into it, although I had so many different issues I felt like none of them would be bad enough on their own. So, I pushed forward and tried to deal with it the best I could.

I had  attempted therapy over a year ago, but I stopped because I could not drive after seizures and it was too much work to find a ride to multiple appointments. I was able to start driving again just two weeks ago, so I have decided to start therapy again. I am hoping it will help me with the anxiety I am still dealing with. I realized yesterday that I still cannot mow the yard. My first seizure before I was diagnosed with the AVM happened when I was on a riding mower. I used to love getting on the mower and letting my mind run as I mowed the yard. I do not mow anymore. I get nervous even thinking about it. I am able to drive right now because I have been six months seizure free, but I am nervous every morning when I get in the car to head to work. My second seizure happened when I was driving my car. I need to drive, I want to drive, so I push myself to do it even though I stress every second I am in the car. I have not gone shopping on my own for a year and I do not know if I can. Luckily I can order groceries online and pick them up after work. I am worried that I will have a seizure and no one will know what is happening. I worry that someone will talk to me and my words will not be there or I will not be able to answer them in a way that makes sense. I really need to figure out how to get my life back, so therapy will start in two weeks.

I know anxiety is something so many people deal with and once you have other major health problems on top of it, things just seem to multiply. Anxiety on it’s own should not be shunned or ignored because it is hard enough to deal with, but I think it is something people do not understand. I remember always being told I was just shy, get out there and talk to people, it gets easier the more you do it. I wish I had been understood a little more when I was younger and maybe it would not be so difficult for me now. Therapy is a start for me now so I can move toward the life that I see in my mind.

 

Remembering That My Memory Doesn’t Always Work Right…

Remembering That My Memory Doesn’t Always Work Right…

On November 3rd, 2016 I could remember anything, or at least anything I needed to remember. I had worked for a company for twenty years, an accountant for eighteen of those years. I easily remembered entries I had to put together for monthly financials. I did not have to write down phone calls because I just remembered what co-workers needed. Remembering things on a daily basis were simply taken for granted. I knew I would not forget.

Move ahead one day to November 4th, 2016, I had a craniotomy to remove the AVM(Arteriovenous Malformation) in the left temporal lobe area of my brain. That was the day things changed. I had not realized it yet, but my memory was not going to be the same. Maybe it will continue to get better, but nearly two years later I am still struggling with my memory.

When I first started speech therapy, it was easy to see that my short-term memory was terrible. I would read a sentence and forget half of it when I got to the end. A short list of items was told to me and we moved on to another task. Going back to those items, I could not remember them. Mainly, the brain surgery was affecting my brain and as I recovered and worked through my therapy my memory started to get better, but it has never fully recovered.

The surgery did not make me forget the day-to-day things. I still knew I had to brush my teeth, take a shower, eat my breakfast…it is the new information that comes into my brain that doesn’t always stick. In a way it is more frustration than a major problem. When I first went back to work, I avoided new information. I had to catch up on over two months of work. My boss was the only person that could do my job and the company had her working an a different project when I was gone, so I spent a lot of time trying to get things caught back up before I could move forward. It was after that point and I started trying to jump into new work was when I really understood my memory was not something I could treat like I used to.

I started to write everything down. It was the only way I knew I was going to get work done correctly, make it to appointments, get all of the groceries and household shopping done and get the bills paid. I felt embarrassed that I could not remember everything. It was a struggle and upsetting at times, but more I worked at it the better I felt about things. I finally started worrying less about what people would think about my memory issues and started to ask them to stop and repeat what they said so I could get all of the information correct. The one thing I still have troubles with is that others will take advantage of it. My husband has told me more than once that he told me something and I do not remember it. I worry I will just be used as the scapegoat if something is not done at work, a bill does not get paid or if something important at home does not get done.

Something I do understand is that many people have empathy for what I am dealing with, but I wish others would stop comparing my problems with getting old and forgetful. I cannot count the number of times I have heard “It’s part of getting old”(I’m 46 by the way) or “I know, I do the same thing”. It is meant in a good way and I always smile and laugh with them, but it is not the same thing. I went from one day having a great short-term memory to struggling on a daily basis. I want to try to explain it to others, but at the same time, I know they really do not care. When I say they do not care, I do not mean that in a bad way, but everyone has their own struggles through life and this is one thing I just have to deal with on my own.

I play memory games, I read every day and I just continue to try to push myself. I do worry that because I already have a hard time with my short-term memory it will get worse as I get older. I think that is my fear over what I cannot do right now, but what will be mind be like in twenty years. I want to ask my neurologist, but at the same time I am afraid to find out. Will it make me continue pushing myself or just make me quit caring if the news is not want I want to hear?

Memory struggles are so difficult, but for now I will keep pushing forward and do what I can.