Summer

This summer rather busy for me with two girls needing to go here there and wanting to go even more places beyond the usual places they already need to go. My two girls are in gymnastics, one in her first year of team, and unlike some families that take off in the summer we do not. I feel that there is a need to have my children only one organized sport and both girls do very well in gymnastics works for me because I get to sit indoors out of the sun and watch them do.

The one thing I must consider especially when they weather is nice and sunny is that I have to limit my time in the sun. I must do this because of the medication I take to stay seizure free. There are times my girls will try and beg or guilt me into going to the park, swimming, or any of a number of outdoor locations and I must say no if I do not have help from a second adult who can drive if I were to start feeling sick from too much exposure to the sun. I hope in time that my girls will understand and appreciate what I have given them in there childhood.

The hardest thing for me is that I love the outdoors and would spend all day outside if it were not for the sun that stops me from enjoying a full fun day in the sun. When I was little I was on Dilantin which worked great although there was the fact that I would constantly have my blood levels checked it worked great and I had few problems with the sun. I was outdoors all the time going horseback riding, swimming, sailing, and many other outdoor activities. Now that I am on Oxcarbazepine (Trileptol) and it has effected my ability to spend my life outdoors. I know now that I am never wanting to have any more children I could probably switch but the current medication is a known quantity and I do not want to change now and cause me to have a seizure I have not had since 1998.The best thing to do now is just remember to spend the time outside with my husband or friend that understands that I have some limitations.

I am simply glad that I could have the family I always wanted and gave birth to three healthy happy children. I also have a wonderful husband who may not always understand all the full extent of my limitations but loves me anyways. Unless you have multiple disabilities (or a complicated one) I think it is hard to fathom the obstacles that I or anyone else with a disability faces on a daily basis.

Relaxing Day on the Agenda

Talk of Seizure Disorder

I am happy to not have to mow any part of my lawn this morning and can spend the weekend relaxing, as much as my middle daughter will let me. I also am not scheduled to work until Thursday which is good and bad all at once. I say this because I not only have have work but also my middle daughter's gymnastics and Toastmasters meeting that evening. I like to stay busy although this busy seems to mean the second I get home from the meeting I must go to bed because of my extreme fear of flaring up my seizure disorder.

Before you get on to me saying that I have epilepsy, not a seizure disorder, I shall disagree with any medical label after being told epilepsy was defined as seizures that could not be controlled by medication. My seizures are fully controlled by medication and rest thus it is not epilepsy in my eyes. When I was under the age of 18 I had Grand Mal seizures that means I not only had tremors but also would throw up. I would often wake up while having a seizure and there were a few times that I would have to go into the emergency room to get extra medication intravenously pumped into me but most of the time they would end on their own within thirty seconds to a minute. The result was that my mom would make an appointment the next day with my pediatric neurologist and my  anti-seizure medication (Dilantin then) would be upped and I would be stable again at least until I grew or gained weight again. My blood levels were constantly monitored through blood tests I protested through until my step-dad offered me a pair of shoe roller skates if I did not cry. Well I did not cry and I got those brand new shoe skates the next day. After that day I took the tests like a pro and even realized that if I stare at the needle going into my arm (always my left because of the lack of full feeling on my right side) I relaxed much easier because I knew when it was going into my skin and vein.

My seizures now are classified as Jacksonian Marsh and basically mean that the tremors on my right side have remained, I am fully aware when a seizure is coming on and sometimes can sit down before the seizure occurs and if I don't I feel gravity pulling me down. In these seizures I am fully conscious and really would love to tell anyone who maybe trying to rescue me that I will be ok just give it a few seconds. The medications I have been on since I was eighteen have been Tegretol and Trileptol (other wise known as Carbamazepine or Oxycarbamazepine respectively) the only difference is the latter is the slow releasing form of Tegretol.

Once when I was about eighteen I had a seizure as I was getting ready for the day, a day I was supposed to go off to camp, which my mom immediately nixed because she got scared. The reason my mom got scared is because I had just gotten out of the shower and was brushing my hair and putting on my make-up when gravity brought me down between the bathtub and toilet (about three to six inches between the two) which is where my mom found me right side tremoring (if that is a word) and all. She initially was not scared and I could hear everything she said and I really would like to have re-assured her but I could not because the actual seizure would not allow me to communicate with her verbally. The seizure continued so long that she did end up calling 9-1-1 and all the forces came out to help (police, firefighters, and EMS) all arrived. Thankfully by then I had come out of the seizure and since I was not dressed my mom placed my towel over my body. I was lucky and was not forced to go to the hospital because once the seizure stopped my mom knew that all that need to happen was I would go to my neurologists that next week.

The only other time I can remember having a seizure like the one above was on April 15th, 1998 after a graduate school seminar that lasted a full day and a half with a homework assignment that needed to be done the night between the two days. It was the Sunday as I was in my bathroom getting ready to go out to breakfast with my husband and 2-year-old son when I felt that gravity pulling me down, this time I think I managed to sit down two seconds or so before the tremors started and rode it out like a trooper that I feel I am. After the seizure ended I finished getting ready and then stepped out of the bathroom and asked my husband if he heard me banging against the door or wall and he said 'No.' He just thought I had dropped something -- well in fact I guess I did if you count myself quickly dropping to the floor so I would not get hurt. The seizure is the last one that I had since then and now take seriously the fact that I need to get my proper sleep at night and most days a nap.

The way I stay seizure free is easy -- I make sure to take my medication as prescribed (Oxycarbamazepine) twice daily and rest when I am tired. I know that my family has a hard time with this at times because I would love to be like those regular always active moms that can go from sunrise to way beyond sunset but I cannot. My seizure disorder and cerebral palsy do not allow me to be that person. I have also had top deal with doctors here and there tell me that I could possible go off that one medication but I will always stop them their because I tried that once and it did not work then thus I shall never try again and have specifically told my family to never let a doctor talk them into taking me off the medication.

The only main drawback to the medication is the fact that extended sun-exposure does cause me to get sick from the heat and sun itself. This means that outdoor public pools are usually not an option unless my husband is able to come with my girls and I just in case I were to get sick at least I have someone to drive us home. Thus I am one that will try and find activities to do early in the morning, like walking in the early morning or near the sunset, or indoors, like bowling rather than risk my health and the safety of my kids. I know my girls have a hard time understanding but I am hoping with age that they will understand and come to appreciate the things I have done for and with them.