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.

I Must Remember....

I know how often I say I can do anything I set my mind to but there are times I must slow down and say well I will have to try whatever it is later due to the fact that I need to take into account my body needs more rest than most people around me. The fact that I must listen to my body frustrates me because I am a very independently-willed person that does not want help and would love to say if I lost my husband due to illness or worse that I could absolutely take care of myself but not sure at the moment how that would work.

 There was a time I would try and work the 40-hour week and then come home to take care of dinner, family (then only a son and husband) and try and keep going until I could go no more during the evening. After an accident at my workplace (department store, then) where I eventually had to have my two front teeth replaced by a bridge (later a second on my own dime) I have had enough and refuse to work a department job ever again. The reason is because I only had that accident after being denied a break because it was not my turn and they were behind on breaks no matter that I had a disability and was feeling dizzy: I was told that I could get water but had to get back on my cashier lane.

Currently. I am working very part-time at a children's clothing store where if I need a break I can get one when I need it and am treated like a human being not a number or a workhorse. I love the fact that my managers and co-workers understand that sometimes I need to ask for help because of my few limitations. I do wish there were more available hours but the economy is slow and thus no one is buying for their tween (don't call them little) girls.

When I am at home: I will try almost anything before I scream in anger (mostly at myself) at anyone that happens to be around me that could take over. The fact is that I know what I want to do but with the limited use of my right hand I have a difficult time when putting stuff together. I usually end up being told to step away and either my husband or son will finish whatever do-it -yourself project I started because I was sick of waiting around for someone to open the box and put the project together.

Life is great but when you have limited abilities it is good to know your limitations and not take them as a weakness but as a reason to step back and finally ask for help. Asking for help is not a bad thing it is only understanding when it is time to sit back and ask for the help you need in life to make it more comfortable for you as a disabled person. The fact is that even the people around you have limitations and must ask for help.  

The Dinners in My Household

This last Thursday I had a busy day with work in the morning, my middle girls team practice, and then River Valley Toastmaters meeting in the evening. All of this meant no naps and somewhere between gymnastics, the meeting and bed I got macaroni and cheese, and then later meatloaf my husband loves so much. You see we have a rule in our house: My husband usually does all the cooking. I learned early he did not my cooking and will rarely eat anything that does not not  come in the package of  ground beef, steak, or anything from cow. Personally, I am a chicken, pasta with creamy sauce kind of gal. I also like the taste of meat that has a sweet taste, like pork.

The fact that I do not cook dinner all started soon after my then fiancé  now husband of 17 years, moved in together 18 years ago this August. I had really never cooked much before because my family mostly went out to eat after my parent's had a long day at work and really did not want to cook so out to dinner, somewhere like Coco's, Polly's Pies, Chinese Food, or something similar but  nothing fancy. I thus only knew how to cook macaroni and cheese, hot dogs, pork chops (Shake 'N Bake), and tacos. I also learned how to do Polska Kilbasa with fettuccine Alfredo  (from a box). I did not even know really how to make spaghetti sauce (and the fact is I never liked the stuff in the first place didn't help). Therefore every night my fiancé would come home after I would go to bed so he could eat whatever little he could tolerate of my inability to cook and throw away the rest (I'm convinced) without me feeling to bad. Yes, I knew his tricks and even now I also know when he is subjected to my cooking or something new (or sweet) for dinner the faces he makes sometimes make me cringe. Therefore, my husband pretty quickly in our relationship together got the chore of cooking dinner his way with the caveat that I will tolerate most anything (but his tomato based ground beef spaghetti sauce). Heck, eating to me is something I see as a necessity to stay alive and healthy not something to enjoy so he got the task. You will never see me binge eating or eating when I am depressed that is for sure  

If and when I get to cook it usually means it involves my kids and I eating something like macaroni and cheese (the easy way out -- from the Kraft box) with broccoli (for my son and myself). The result of this is that we call it T.V. dinner night because that is exactly what my husband gets to eat because, yes, you guessed it, he won't touch the pasta with cheesy cream sauce with a ten foot poll.  I love to cook with my kids but know that we must usually make sure that my husband(their dad) is busy with work or has something else available to eat so we can enjoy our food without the unusual smacking of lips at the dinner table by their dad. This means yes bacon and any other pork product is right out if we want to have a dinner where at least he does not complain, in his own special way.

Don't get me wrong I love my husband but I will kindly give up cooking just to have peace between the two of us and make him enjoy eating. The fact now is that the kids often times complain that we never have anything new although that  usually comes from the fact that my husband does not have time to learn new recipes because he has a full-time job as a professor who will actually put in more than 60 hours a week to bring in the money so that we can have the lifestyle we enjoy.  The thing we try and remind our kids often is that they will get a chance once they are out of our house and have a place of their own that they will be able to have whatever they want and switch up their menus as often as they like and have the time to do just that.

To tie this to the blog itself I shall end by saying that our household is like any other no difference just because I have cerebral palsy. Dinners are still a big deal and sometimes become contentious just because of what  we decide to cook in the evening.  

Listening and Obeying the Body

As someone with cerebral palsy I will say that the best thing I have learned is to listen, obey, and doing what my body asks me to do. The fact that cerebral means brain and palsy means paralysis the thing I must do is to remember that the brain tells the rest of the body what it will put up with and when to take a break and sometimes lay down or take a nap. If I do not it may mean that my brain synapses may cause tremors or seizures. Therefore you will never find me up all night unless I take a really long nap during the day or I am sick. I take my naps seriously which sometimes causes my husband to become frustrated because he believes everyone should be able to power through their day just as he does many a days.

The fact is I have dual diagnoses cerebral palsy(of course), seizure disorder, and depression meaning that the combination makes it harder to go about life like a person with only a single diagnosis like depression would never understand. The fact that all three of them affect the brain alone is not good as well.

Life is life and everyone is different so please remember to not judge a person by what they look like on the outside. The fact is that there is more going on behind the scene just as the beauty of a person is not always on the surface. Get to know a person before you assume that they are healthy both inside and out before you make an assumption.  

The Most Important Thing

To keep limber and to keep the abilities you (or your child) have is to always continue to exercise and or stretch out your limbs to keep them  as usable as they can be for your entire life. The more you stay active the longer you will be able to live on your own.

I know I talk incessantly about exercise but I will say it is about as important as putting a healthy foods inside your body.  I try my hardest to stay away from the sodas, fast foods, and many candies for a reason. I also live in a state that has a portion of our populatuon has a big type  II diabetes in the nation because we have allowed our children and ourselves to live off of sodas, high fructose juices and more snacks that are unnecessary when apples, melons, grapes, and more fruits (as well as easily snack-able vegetables) readily available that have none of the added ingredients that ruin our health therefore cause disease and many times early preventable death

I will close now by saying whether you have cerebral palsy or not, please remember it is up to you to take care of yourself and your family. The easiest way to honor your family  by taking a few minutes to exercise and prepare the proper  dinner instead of bring home the bag of burgers or having pizza delivered. Remember to that the vest conversations happen at the dinner table. A

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.

Staying Busy is Not Hard

The thing that is hard for me is remembering that I must take time to relax and rejuvenating myself so that I am the person I want to portray to others. I do love to stay active despite what my girls believe I would be out and about more often if it were not for my need to get only a minimal amount of sun due to the medications I am on to stay healthy and get them from place to place. My son being older seems to understand which is nice. The thing is my son is 17 so he understands but even so as a younger child he would find friends in the neighborhood that he could spend time with instead of relying on me to entertain him.

My basic goals are to stay healthy enough to get the girls to activities such as gymnastics and sometimes bowling or even walking around the River Park. The things I plan are things that are either indoors or take less than and hour in the sun to complete. I feel bad that I feel I cannot take them to the public pool because of the lack of shade and the fact that I may accidentally spend too much time in the sun and thus become sick and not be able to get them home safely. I know it hurts them when I say no and see them stomp away as if it is their fault and I simply do not love fun.

I love fun I just have limit the amount of fun I do have at once. I enjoy life for the most part and get frustrated  because I am unable do more than I do already. The fact is, yes, without my cerebral palsy I would most definitely be more physically active than I am now.