New year resolution

I know a lot of people make all new resolutions every year, they promise to lose weight and eat better, stop smoking, be more patient, but I refuse to play along. There are enough disappointments and failures in life to not add another. I have made them before and by the third week I have given up. I end up kicking myself for the rest of the year about how I failed myself. It is not worth it. If you want to lose weight it is okay to start in march or September. January 1st does not have to be the start of failure.

Clothes

I'm going to say it and if might offend some of you, the older I get the more I like clothes made in Cambodia. They really know they are doing.

How dare you?

I called for you to listen, not to tell me i was wrong and all the ways I was wrong. Sometimes if you just let people vent they will come up with the solution on their own. The only thing they needed from you was your ears not your mouth.

Me or the medicine

In the process of finding a fix for my epilepsy, I have tried all different medications, had the side effects, been taken off them and put on new ones with new side effects. It gets to the point where I do not even know if constant headaches, fatigue, mood swings, nausea, blurred vision, and dizziness are just me. No matter what the medication it all has some of this and some of that, like Texas chilli. Maybe one will give you migraines but your mood is great. Another will make you so tired you cannot stand up but your headache is very small or nonexistent. Some make you depressed so you need to add an anti depressant for more side effects but you'll have somewhat of a balance mentally.
I wish doctors would take medicine sometimes so they would truly know how you feel. I think they would be more empathetic if they also had a laundry list of medications and side effects.

Christmas mom

My mom was different than, what I am finding out, most moms and that made it for a rough Christmas. As a child my mother invited everyone to our house for Christmas and daily dinners for that matter. I do not know if she was a saint and never wanted anyone to eat alone or if she just loved to stay In the kitchen cooking for twenty people. My dad was in the us navy and I remember her always telling him to invite all the single sailors. As I got older she would tell all of us girls to bring a friend and tell them to invite a friend. My husband has friends that were always over for the holidays, and so does my sisters husbands. I do not remember a quiet family Christmas. There was always someone.
This year we are in Maine, far away from any family and it was the loneliest christmas ever. I had my husband and children but what about all the other people? Should I have invited the neighbors, strangers, or called upon the Boston redox to come and eat? They have got to be hungry.
I had plans to go to a girlfriends house and spend Christmas with at least 10 people but my husband was brought up different. For him it is about being with family, just family.
For the first time in 33 years four people sat at the Christmas table and my heart broke.
Thank you mom for being so giving, and teaching us that family is not just husbands and children. It is friends, and friends of friends, and families that do not feel like making a huge christmas meal for two people and people that do not have family around.
You taught me about family and people and for that I thank you.

Rough to start over

Today I had a appointment with my neurologist and like it often is I left more frustrated than when I walked in their door. I have a rare form of epilepsy and every time I see a new doctor they question whether I have seizures or not. At the medical university of south Carolina they speculated that it was just a nervous tick until an emergency EEG was done and I had fifty- nine seizures in 57 minutes. They soon apologized for their mistake. This new doctor in Maine of course cannot rely on musc's test and procedures they want to do it all over again, testing whether I have epilepsy at all. It is so frustrating to have to do it all over again every couple years. All new hospital stays, all new diets and medicines. When, when will all this stop.

Waiting

I sat there eating and waiting for you to come around the corner, you never came. I saw several men, tall men, blonde men but not you. Of course not you. I wanted so bad for you to be there. No words, just a smile, order a sandwich, and sit with me. Eat together and enjoy each other..... Quietly.

Closer to you

In light of all that has happened the past 48 hours I have to question if it is easier on me because I am closer to You. 
My husband and I had a dear friend killed in a car accident by another friend who is in critical condition at the hospital. Yes, they were driving extremely fast while drinking. We have spoken on the phone to several people we are also friends with comforting and consulting. Here is what I have found.... Those people that know You, seem to be taking this in stride. We all comfort each other but are comforted in Your love. We know whether they were drinking or sober, driving fast or slow, if You wanted to take them You will and did. 
To all the people that deny you or have never known of your love and grace, they suffer. They seem to take this harder than anyone else. 
Is it You? Is it You that keeps us non-fearful of death? We know that there is a place way beyond earth that is luxurious and perfect. We know of your love and comfort. With You we are strong enough to lead those without your comfort to a place of joy. Thank you.

Evil

Who knows you the best? Your spouse? Your parents? Friends? I am having a debate in my head about the answer. Just because someone has known you for 30 years does that mean they know you the best? Or do they know 30 years of baggage? Do they sometimes reflect on things you did 15 years ago and say "Remember I know you" Maybe they should say they knew you. In even 1 year a person can change dramatically and the person they were is no longer there. It is hard for someone to be around the people that once knew them. When conflict comes up it is automatically your fault in their eyes because 10 years ago it would have been. What about new friends that you talk to on a daily basis. Do they know you? The new you? Maybe the you that has always been there and is just now showing?

Someone close to me has called me selfish and rude and confrontational when they were not even there. They have no idea how calm I have been. They assume that I am some evil person. Is this person really close to me? Do they really know me? No, I hope not.

Nervous

One thing is for sure, I do not have the best track record with Doctors. I am quick to shut them out and never go to another appointment. It is as if I am waiting for them to say one little thing to piss me off just so I can have an excuse to never back. Because I have all this useful information about myself I know I need to try harder to open myself up, listen to critical advice, and try not to judge them as they sit there and judge me.

I have an appointment today and I will do my best.... at least I will try.

Get your Ass up

Last Thursday I did not feel well, a little down in the dumps, and everyday since gets worse and worse. Thursday I called a doctor to get a referral to see a counselor as soon as possible. I know myself well enough to know nip it in the bud as soon as possible so you do not get into the danger zone. It has been a week and I still have no counselor, or medicine, or help and I get worse by the day.

I tell myself to get your fat ass of the couch and do something. GO SOMEWHERE!! Anywhere!! I got into the truck today and drove around the cul-de-sac circle only to pull back into the driveway. I know what I need to do but I just cannot seem to do it (it being anything).

I just want to eat, Eat until I am sick. Eat until I hate myself.

I have now contacted all of my doctors, Neurologist, Ob-GYN, and family doctor to call in an anti-depressant for me but no one is able. Family doctor is out til next Wendsday and Neurologist only prescribes anti-epileptic drugs, OB only prescribes vaginal stuff. I ask myself, it has been 8 days now and I am still waiting for some thing to help. What if? What if I get to the danger zone and still have no help? Will they help the next person that calls and says please call this prescription, I really need it? Or will they allow another person to slip through the cracks.

I hate feeling like this every couple of months for no reason. I guess I could gather many little stupid things but the truth is there is nothing REALLY wrong. Life, my life, welcome.

Wasted Time

I spent 20 years of my life denying that I had epilepsy. I would convince myself I had anything but THAT disease. The more I denied it, the more it chased me. The more it chased me, the more I realized if I just embrace it I CAN make this illness better. I can defeat it or at least manage it...and I love to manage, control, boss around-- whatever you want to call it. I join in every walk I can for epilepsy and read all day about new strides within the research community, knowledge is power. I embrace this challenge God has given me and look forward to doing whatever I can to help those in the same predicament. He makes no mistakes, I guess He knew I would be a strong helper. I cannot think about the wasted time I have to plan my perfect God given future.

Family Tree

As long as I live I will never forget that tree. The tree of strength and hope that sat in front of Papa's yard. We all stayed outside and climbed the tree morning day and night. We all had our designated spots. Ricky and Ryan would go all the way to the top where the branches could barely hold them. Thank goodness together they might have weighed sixty pounds. My sister would bring her book in and relax on the branches like a lazy-boy recliner. Candice and I would stay toward the shallow end of the tree, talking and reminiscing about the first six years of our lives. Rachel always seemed to be caught in the middle. She wanted to be with the boys because they were her age and she also wanted to be with all the girls.
In that tree we had no worries, no fears and most important no adults to boss us around.
That magnolia tree was the string that brought us all together and kept us close. We laughed, joked, and played together in that tree.
Years later after papa and grandma sold the house and moved to Florida ( because isn't that what all old people do) I went back to visit that house and much to my surprise the tree was gone. The new owners cut it down. They never knew about it's comfort and joy. They put a new coat of paint on the house and fixed up the barn but you can never replace that tree.

Too Much Information

There is a such thing as too much information, nobody needs to know you that well. Nobody needs an inside peek at every nook and cranny of your life, your failures and tragedies, goals attained and successes. People have a bad habit at loosing interest and let's be honest, respect for you. As much as we try to be nonjudgmental and open to new things, we are not built that way. Yes, at first we can be somewhat intrigued by your life experiences, but soon you have lost us. People love mystery, we enjoy the wonder of where you have been and what you have done. As you remain mysterious, we remain intrigued.
Think for a moment about romantic relationships, if sex happens on the first night, the relationship is liable to go to the dust. The partner has already seen the inside package and has essentially lost interest. Now, what if you hold out, a month, a week, a year, the suspense remains and as does the relationship (if it was ever going to be one).
The same goes with friendships, once you have opened your banana peel all the way, your phone suddenly stops ringing and the relationship is gone. Keep the mystery, keep the admiration for what we think your life was like. The suspense is better than the knowing.

Wear and Tear

I had a man come over today to clean my couches and he made a statement that got me really thinking, "You know these couches have some wear and tear," I said "yes, they are 6 years old" I would hope they have wear and tear. I hope that when you look at my love seat you see all the cuddling that we have done. I hope you see all the times I have spilt my coffee because I am up all night with babies and exhausted (way to exhausted to hold a cup of coffee). I hope you see guest sleeping on the couch and sick babies on that couch.  My couch shows life, our life, a life I am proud of.
Our couch was the first big purchase my husband and I made as a couple. I look at it with adoring eyes. I remember pregnancy contractions, changing diapers, fighting and making up all on that mustard colored couch.
I think about the words wear and tear, maybe it is those people with the achiest legs and worn out backs that I should look at with admiration. They have lived and it shows. I want to live. If you look at me in 20 years I want you to see, LIFE. My life, love and hate, fear, sadness and most of all joy. Look at my broken body with admiration not pity, know that I spent every second living.

Up all night

There is a huge difference between staying up for a social gathering or movie nights and a forced sleep deprived EEG. It is only 11pm and I am already tired. Where is the coffee? Oh right I cannot have caffeine. I hate these things. Not only the lack of sleep, but the flashing lights right when I get there, the scrubbing of my head. the paste afterward. I can make it. I always do.

Just as I suspected

I knew it, you are just as dependable as everyone else. I should have known asking you to do anything would end up in me crying. You always seem to be there when I say park or fun but when I need you....where are you?  I asked 2 weeks ago for you to watch the children while I had a sleep deprived EEG. You said of course, You had no problem helping out. For some reason you thought it was okay to discuss the location of my children with someone else and not me. You would have them for a little bit and then pass them to someone else. Who the HELL do you think you are? Thank you anyway, for nothing.

Rough Days Ahead....Duck

Never can just one thing happen, it all comes together, the good and the bad. I try to remind myself to keep my head up, be positive, stick out the bad can you can live in the good. Some days though it is harder than others.

Two days ago, I went to the grocery store (typical story so far, huh). I have a deal with my husband that the boys and I go to the grocery store by walking or on the bus and picks he us up. It was raining, so I asked a friend if we could bum a ride, she agreed thankfully. I guess I should add that this was not a want trip, this was a need trip. My freezer had 3 items in it, no milk, no eggs, no essentials. And back to the story, we spent almost 3 hours shopping and at 4:45pm we were done. My husband gets there at 5:00pm so it was, as usual, perfect timing except I missed several calls from my husband saying he had to work late. Now what? I have checked out already with 3 cartons of ice cream, meat, shrimp, ect. I sat on the bench outside for a moment with two boys and two full grocery carts filled to the rim. I thought of several possibilities, a taxi in rush hour traffic would not get to me for an hour, the bus surely will not allow me on with all these groceries plus the mile long walk from the bus stop to my front door would be killer. I had to swallow my pride and call my girlfriend back. She came, threw all my groceries and the children in the car and I cried in relief. Tell me, who else has to sit outside of Walmart with 2 full grocery carts and tears in their eyes.

And onto the next day, I think it is important to have someone who does not just support you but truly understands your illness and the day to day struggles. I started an Epilepsy Support Group to meet once a month. I thought it would be a great idea to share information with one another: Doctors, medicines, Struggles. I guess I was the only one that thought that because I was alone. I sat in the support group trying to remind myself not to give up and think positively. I did everything I could not to drop tears, again.

Day three, My boys have no choice but to walk miles and maybe sometimes they walk too much. Last night my five year old came to me and said his shins hurt. He asked me to wrap them an ace bandage and I did. When he woke up this morning he claimed he could not even walk or stand. I will admit he can be somewhat dramatic but I never know if if is drama or true pain. I called the doctor and she said to bring him in, just in case. I have a long list of people that can drive me if needed so I went ahead and made an appointment. Bad idea. I called one and she was busy, and another and she was in severe pain herself, and I called another with no answer and another that was busy. I finally called my mom and cried. I was at my limit. At that moment, my husband that works so hard text me and said he is on his way. I needed him and he came. I has loads of stress and worry come off into my husbands hands. Thank you, honey for making my day a little easier and for knowing I can always depend on you.

I cannot wait until day four it should be exciting.

God

My husband has been home the last several days, so if we need to go somewhere he offers to drive and we gladly accept. Here is the thing, as much as I have complained, pitched a down right fit about driving, now I miss walking. I realize how much I have missed the nice cool air and exercise. I do not feel as good in a car. There is no accomplishment to riding to Walmart, but huge rewards to walking the four miles. I always drink tons of water on those day and eat healthier. Recently, while he is home, I may drink one glass of water and a full container of cookies. I see which scenario is better and rather than complain I need to Thank God for taking my driving ability away and allowing me to be healthy. 


Thank you God for letting me take the slow route in life and really enjoying it. Thank you for finding a way for my children and I to be healthy and fit.

Missing you

I cried today, not for me-- but for you. While you are hiding, I am weeping. I miss you so much; The you I know, we know, deep down you really know.  I pray that you will make it through this troubled time and come out swinging for the next trial. Know always that I loved you just the way you were.

2 Choices

"I don't drive."
"Why"




1) I went out too many times, drove drunk and got my license taken away. I could go into details (made up) about having a great time, running into a tree or almost hitting a small child. I could even name drinks and the rude cops that made me cry. 


or I could tell the truth


2) I could tell you that I have epilepsy and the state thinks I should not drive. I could tell you that sometimes I do cry when my boys and I want so bad to be able to go and just cannot get there. I then have to listen to your pity. I hear you say, your there for me or your sorry to hear that. Questions go on and on about how do I get here and there and do this and that. 


Sometimes it is easier for you think I am a drunk. I did this to myself.

Epilepsy Groups

I belong to a group online for epilepsy and a man wrote on there that he rode twenty miles on his bike. I think about him all the time and wonder if it started out as him riding because he had to get milk from the grocery store. Does he ride for enjoyment? Did his body just get used to riding, one day he was going one mile and the next 20? Am I going to go as far as him? I am needing milk now and can go eight miles but years from now will I be walking 26 miles in a marathon because I am used to it? To the man that goes the distance on his bike keep on, at least we are healthy, or as healthy as we can be.

Training

I decided to put my best foot forward and sign up to do a 5K for epilepsy. There is one coming up in September and I am going to be ready. Training begins. Eat better, Run Faster, Buy new Tennis shoes, Stay Hydrated. We will do it. My 5 year old son wants to do it with me. I am so proud of him. He will probably be the first to the finish line.
One of the greatest things about my condition is my healthy children. They can run circles around most children because if they want to go somewhere, they grab their tennis shoes. They eat cake, and cookies, then run it off so they can get a library book. I am a proud mommy.
Good Luck to me.

Blubbering Idiot

I never though a simple question like what are your hobbies could turn me stupid. I went out with a couple ladies the other night and one of them turned to me and asked, "So what are your hobbies?" I looked at her with a blank stare and she returned with,"What do you like to do?" I realized then how stupid I must look so I need to answer something. Truth is I have no idea. I get so excited when someone says, "Do you want to go...." that I always say yes. It could be hiking, shopping, or riding to the dump to help them carry garbage, I love it. I get out of the house in a car.  Does walking because I have to consist of a hobby? I admit I love to walk and walked before I lost my license but the thrill is gone when you do it because of need not want. I have decided to look deep this week into things that I really enjoy doing.


Hours later:
A hobby that I would add is moving furniture. I will move all the furniture in all my house at least once a month. I have thought about several different reasons, one of which is control. Moving a bed from here to there is something I can control. I cannot control whether I have a seizure or not and apparently neither can Doctors.  I cannot control whether you say you are coming to get me and never show up or show up hours later. I cannot control life but I can control location of my chair and table, pictures and decor. I need to control something and I get a sense of joy with that. I feel strong and powerful and everyone needs to feel strong in something they do.
It could also could be that my father was in the military and for several years we moved every couple years. I had constant change in my life. Nothing ever seemed to be the same. New friends, new home, new placement of furniture. I got used to it and moving a table from here to there comforts me. Again we all need comfort. Comfort food, comfortable clothes. We search for it and find it where ever we can.

Keep Staring

I see you staring at me as you pass by in your decked out, leather seat, GMC Yukon. I bet you have air conditioning in that truck too. Is it even on? Do you see the sweat pouring down my chest and by boys red cheeks? Yeah, we ran out of water hours ago and my husband has us on a budget. No stopping at the store for drinks and ice cream for us.

Don’t worry we don’t need a ride, not like you would ever ask. I just tie Big Lots bags on the stroller for fun.

I bet you think I’m one of those many individuals that are suffering right now with the economy. I bet you think I shop at Big Lots because that is all I can afford. I bet you think I’ve lost my job and I’m going to lose my house soon, but no.

The strangest thing is I wish I was.  The economy will eventually turn around; everyone will have employment again and places to live. Maybe not the same job and house, different paychecks and mortgages but they will have something.

I will still be walking, and you will still be staring.

School Days

“Mrs. Thomas, we just wanted to call and let you know that Brady has gotten injured on the playground,” before the school director could finish her sentence I hung up and started getting my two year old dressed and tennis shoes on.  In Charleston, SC the temperature must have been at least 100 degrees but it did not matter, my son needed me and I was bound and determined to be there.

His pre-school was conveniently only a mile away but in this heat it felt like twenty. I can barely breathe. As much as I want to sprint up there, I can’t.  I just have to walk as fast as I can and pray the whole way that he is okay and knows I am on my way. I had no time to grab water or sunscreen for that matter.

“Please God let Brady be okay. Please let somebody see the stress on my face and pick me up and take me to my son faster. Keep me from having a seizure in this heat with exhaustion and my current stress level.  Amen.”

Of course no one stops. They all think I am walking for my health. I wish I could wear a sign. I am almost there I can see his school and my anxiety level drops from level 10 to 2. Thank you.

I go into Brady’s classroom and just hold him. He has a cut down his left eye. Some little boy pushed him into the fence but Brady is okay. That is all I care about. Let’s just walk home, slowly, we are not in a race-- anymore.

Trust

“Now what the hell am I going to do?” asking myself, as I pace the library parking lot back and forth, while period blood is steadily dripping down my leg. I’ve walked two miles up hill to the library pushing a stroller, carrying a twenty pound book bag on my back to return our books and now this. Of course I did not bring myself a change of clothes. Isn’t it bad enough that I have to carry snacks and drinks for the kids, medicine for myself, an umbrella in case it rains, a wallet, books, and movies to return, a notebook filled with information because my mind won’t remember it, cell phone, and on and on and on.

I know that if I allow my nerves to get the best of me I will have a seizure, so I have to try and remain calm, relaxed, and figure this out. Walking back two miles is not an option; I won’t make it without blood being everywhere. It is already soaked through all my clothes and I don’t want it on my tennis shoes too. I don’t live in the city so there is no taxi.

Cars begin to pull up and a realistic person would never hitch a ride. Let’s be honest, in today’s world hitching a ride should never be an option. Although I think of myself as a pretty realistic person I am also not in the typical situation I have to. It must be nice to have that luxury to just hop in your car and drive back home. It must be nice to never have to make the kind of decisions that may or may not put your children in jeopardy.

A woman walked out of her Subaru station wagon, mid-fifties, short brown hair, compassionate smile, and I asked her if she could take us all home. I had no choice but to trust that she was a good driver since I had no car seats. I had no choice but to trust she was honest and good. Luckily for the sake of my children and I she was.

We asked her to drive us two miles home and then back to the library, she was happy to help. Just for convenience I left my son’s bicycle and stroller at the library rather than loading it into her car trusting again that it would not get stolen without locks. Moments later we returned safely from a stranger’s Subaru to our bike and stroller just as we left them.

No Joking Aloud

Another trip to the hospital, I am tired, cranky and hungry and there is no telling when a seizure is going to happen. You would think as much as I go to the doctor that I love it. You would think it is my favorite place to be. Some people like to sit at coffee shops, some bars or gyms for me you would assume the hospital. This is only my fourth EEG this year, all of which have been sleep and food deprived. I love the lack of the substantial ingredients for life. Pile it on. I love to have cords constantly connected to my head and chest. And those fancy bandanas that they always let me keep, I love those too.

I cannot wait until they start scrubbing my head with that god awful paste. The smell is overwhelming but don’t worry I did not need to smell anyway. That nose God gave me was just for looks. Kevin, the electron euro-diagnostic Technologist, decides this is the perfect time to start joking and picking on me. My husband laughs. Bad idea.

I lay there for a moment, boiling inside, do they not realize now is not the time? Obviously, they don’t because they continue and I pop.  I can only sit there quiet for so long before I am yelling at both of them. Now, I am the bitch. Paul, my husband, as supportive as he is, just doesn’t understand. I told him I was tired and he fires back with, “I get tired too and I don’t act like that.” He’s right he doesn’t so that is not a good excuse. Just try one time sleep and food deprivation, someone scrubbing harsh chemicals on your head  and making jokes in your honor, then continuous flashing lights directly in your face and the tech making you hyperventilate. If you do not have an attitude I will give you a Trophy for “World’s calmest Person.” Until then leave me alone.

I am wheeled back to the room soon after and the rest is forgotten. I had a grand mal seizure and forgot the remaining part of the day. The only thing I can say is the pain on my tongue lasted for weeks. That must have been a good one.