Some Random Thought about my life.

[Crystal11]

My Twin Sis and I were born three months early and as a result, we are visually and hearing impaired to the point of permanent disability. We both have Complex partial seizures and were diagnosed with possible Epilepsy at age 4. Because EEG didn't show much, Mom didn't want to continue with further testing and possible medications. As a result, our Epilepsy now is harder to treat- my last neurologist explained.
My Mom was young when she had us and I think lack of resources and info about the condition made it hard for her to understand. We also didn't really know what was happening to us either- not at age 6.
I found some medical records the other day and read on an ER report that "possible Absence seizures" was written on the report. What I was told it that the school was calling Mom letting them know I was having trouble in school because of "staring spells" and "Unresponsiveness" etc. That was happening at age 6 and the neuro that saw us then was saying that he strongly agreed we had Absence seizures and he wanted to start treatment of some sort to see if schooling would improve.
Mom believe it was all from our vision impairment. Vision and hearing loss didn't make school as easy as for most- but staring off and unresponsiveness have nothing really to do with those impairments.
I just thought it was real interesting to know that at age 4, not 6, that they were wondering about Epilepsy or possible seizure disorder!

My Mom was in denial of my diagnosis, several times, of Complex partial seizures. She didn't have access to internet like we do now a days. She only went on what the doctors told her.
We were born three months premature and died several times (when the docs separated us) in NICU.
We were oxygen dependent and stayed in the hospital for three months with many many health conditions, some life-threatening. We only weighed 1lb 10oz. We weren't supposed to live at all, and required three blood transfusions.
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Danielle and I were on the front page of our local newspaper here in Austin a few years ago, 2001 I think? It was about our music and our life. What I found strange was that part of it was emphasizing our disabilities as if just so amazing that we are able to do music. Now, I'm sure that most people don't expect someone with both vision and hearing loss to be able to compose music- or work in a studio etc, but as we get older we have to use more and more assistive technology in order to continue doing this. I just don't feel that the whole world needs to have pity on us because of it.
In one part of the article, it describes a seizure I had while out on a mobility lesson learning a new route to travel. At the time, I wasn't real worried about it but now it really bothers me.
I am open about my disabilities especially to friends that understand me, or people, such as CWE members that deal with similar things and live with them.
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My Mother and even Grandma and a few of Mom's friends seems to understand more and more about our disabilites and for some reason they send us articles about people with deafblindness or epilepsy to us to read. To me, it feels like they are trying to make us feel better by sharing stories about others with our disabilities. But for me, it makes me feel worse about my conditions because its almost as if they are comparing us to others with similar issues. I feel that they are having pity on us or want to focus on it too much. I don't know if its just me or others who feel the same as I do.
Just an odd feeling about it.
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My twin and I had a new neurologist set up and she ordered some tests. EEGs, CTs, MRIs everything to try to figure out the cause and what type seizure disorder we have. EEGs showed "Driving response" to photic stimulation and an AEEG/Ambulatory EEG showed spike-amd-waves on it. These are characteristic to Epilepsy. For me it was a way to confirm our original diagnosis at age 4. When you don't have much evidence about it, its easy for others to sort of discount it, or say its nothing or says it something else causing our symptoms etc.
I have a heart condition, nothing life-threatening and the EKG showed PAC/Premature Atrial Contraction and Tachycardia where the heart beats irregular and will skips stops up to once every three beats and cause pain and breathing troubles. Not a heart attack but still uncomfortable. Now, my Mom would ask me "When are these seizure going to stop?" "When do you think your heart problem will go away?" I felt strange and stuned at the same time- because how am I supposed to know? I can't ask my body when these conditions will get better or end..why would someone think that or ask me that? Especially my Mom- who has been around medical situations and hospitals our whole lives. We saw specialists for everything ever since we were small.
Being born three months early is going to have effects on you. Being 1lb and 10oz doesn't make it easy to live even!
So- neuro said that because of our extreme prematurity and lack of good medical research and techniques, our CNS and other systems in our bodies including our brain would have some trouble, even if mild no matter what.
Most babies born in the 80s just didn't live and those that did have very severe disabilities. While we have disabilities, they aren't so severe that we have to be taken care of or constantly treated.
We are adults that live independantly, went to college, I obtained a BA degree in Vocational Rehabilitation Counseling and am a muscian. I will continue to do what I love no matter what happens.
I have lost more hearing over the years and my vision has been stable- these cause troubles in our lives but surely won't stop us.

Thanks for listening and having patience to read this long thing LOL
Just feels good to sort of write outloud- share stories and get feedback from those who know about Epilepsy and medication issues etc.


Crystal and her guide dog Umbro

Just some thinking I've been doing lately.

 

[Crystalblue]

Hi Crystal. In reading several of your posts, I noticed you mention your prematurity and your mom's, for lack of a better term, "dropping the ball" on your seizure disorder. From the way you've written about it, it makes me wonder if this is a really "hot button issue" for you. It almost seems like you have feelings about this burried deep down. In one way, it keeps coming up because it's bugging you, but in another way, you don't really want to say it. I'm wondering if you feel a little blame towards your mom for this, and then maybe feel guilty for feeling that way, cause, well, you love your mom. I could be totally wrong. I'm no psychologist. But I am someone who deals with a very similar issue.

Let me start off by saying I love my mom more than anything, and am close to her to this day. But there were some things she did, or didn't do, or maybe should have done differently, when I was a kid that have definitely affected my life. I also had symptoms of seizures following a bike accident as a kid, that my mom dismissed, chalking it up to moody-ness and such. I was told by a neurologist recently that with my intelligence, if these had been treated back then, high school and my first (failed) attempt at college would have been a very different experience. I came out all right in the end, I have my RN and am working towards my MSN, but I should have been able to do this 15 years ago. Maybe I could've went to med school. There's a similar issue with my teeth. At about 13, the dentist told my mom I needed some pretty extensive dental and orthdontic work to prevent future problems. My mom never followed through because, honestly, I think she was just overwhelmed with the whole thing. But we had insurance that would have covered it back then. So now my teeth are very crooked with some in the wrong place. I've had teeth split in half as adult teeth forced their way up under them. I still have a baby tooth in one front spot who's root is completely dissloved. The only thing holding it in place are the teeth next to it. When it does come out, there'll be nothing to replace it- until I fork over a couple grand for an implant. If it had been taken care of then, it would have been much easier, and it would have been paid for.

There's some other issues too, but I just wanted to give you an example. I guess my point is, that I wonder if you might feel like your mom had failed you at some points. I've felt that way about my mom in the past, which is so hard because I love her, and it hurts to think of her as failing me in any way. I've just had to remind myself over the years that nobody can do everything right every single time. And that I needed to stop (secretely, buried deep down inside), resenting her for it. It's taken many years for me to process this, and I think I've pretty much come to peace with it. No one is perfect, not even our moms. So I have to come to love my mom for the wonderful, sometimes maddeningly frustrating, imperfect human being she is. This was not easy to do, but I do feel better now. And I feel like our relationship has improved because I'm no longer stuffing down feelings of dissapointment at why she did the things the way she did. One thing I know for sure is, she always had the best intentions for me, and always did the best she could possibly do with what she had at the time.

Those are just some of my thoughts, that you may or may not be able to relate to. Reading your post just struck a chord of recognition for me.

 

[Elsie]

I agree about holding those feelings inside. I do some of that, though I'm better over the years. I never felt like I had a soft place to land with my understanding or feelings about all this. I've felt like gee whiz I was only 12 or 13 at the time and noone sat down and discussed it with me. I didn't feel able to sit and discuss it with them. Somehow I just knew it wasn't an acceptable topic.

Although my Mom is gone now, it took a lot of years to get over resentment for the way they dealt with that. A parent is supposed to be there for their child.

I try to keep remembering, that in 1961, 1962, etc. things were very different. People didn't talk openly about all things the way they do now. And they didn't deal with things in the same way.

Chrystal, your Mom was probably scared about you and your sister just surviving. Not all people are emotionally strong with everything and perhaps she just couldn't face all the problems, and maybe she didn't have any support.

Remember, people like us used to be put away. With that to think about, sometimes it might have been easier to deny and ignore. In these cases we have to parent ourselves as we get the maturity and knowledge to do so.

 

[Crystal11]

Thank you all for your replies. There are lots of good good points in there. Although my twin and I are frustrated sometimes, I think its great to get some feedback from people on here.
Elsie- good point about Mom not having support. Our real father left as soon as he realized we were so sick and in need ot serious medical help. So yes, Mom was left alone to learn and be with us at a young age. She understands that we admire her for this and it takes a strong person to be able to continue on.
We have let her know this many times..

I wish there was more knowlegable people that she could have spoken with. Fears can prevent people from doing things or whatnot.. It effects us all and I think it helps us to learn as well.

I really don't know what I would do if I had twins that were sick and almost didn't make it. Now-a-days, there are counselors and nurses and specialist that see the parents right away for assistance while back then, there wasn't as much help..

Thank you all for replying. It helped me consider more sides to this than my side.

Everyone take care
Crys and her guide dog Umbro

 

[Rae1889]

Aw honey. I agree with the other two. completely. they have good points. and I missed you so much. Thanks for the support.

If you need anything let me know. I love reading your posts on how your doing. How has your seizure control been lately? how has Danielle and Rachel been? Umbro?

 

[Crystal11]

Hi Rae- nice to hear from you. I hope you are doing much better today.

My seizure control has been pretty darn good lately. I am very happy and feel so much better. I have a few smaller ones that really don't effect my life too much. They are annoying but don't last long 40-45sec.
I am now on Lamictal XR and Keppra XR and the Lamictal used to be generic. I asked my neuro about changing it to XR so it seems to be working out real well.
Danielle needs to go to the doctor and get a referral to see my neuro. She is taking forever to do it though- so I keep reminding her to go. I think it will be in the beginning of next month.
Her seizures aren't as long as mine- but she does have a few longer CPs a year but has lots of smaller ones during the day. Sometimes just one or two a day and then other times she doesn't even count. We were diagnosed with Absence seizures because they were so short- but neuro keeps telling me they are only complex partials and thats it. So I don't really bring it up too much anymore. Just accept they are CPs lol.

Rachel has had a few seizures- not a GM for a while now. Those scare me but we become more used to it each time it happens. She now has a doctor here in Austin and doesn't have to worry about running out of meds. Her old neuro was helping her with scripts until she found someone here to help her. So less stress on everyone yay..
She has been doing real well. Can't remember the last GM so that means its been a little while.

Umbro is doing real good. He is my little boy- a good boy. He is sort of bored inside but its so hot and he refuses to wear his shoes... crazy boy. So we travel around the evening times and have great transit services here- so we are very independent and love to get out of the house.
Umbro loves to work and will be turning 7 on the 24th..my little boy!

I hope everyone is doing well.
Crystal and her guide Umbro

 

[Endless]

Hey, Crystal,

I'm so glad you are doing well!

Hey, you may not remember this, but.... Where do you buy Umbro's shoes? Or if it's a local store what brand are they? Maybe I can find them online. My dog's shoes fall off all the time. The pavement gets blazingly hot and I worry he'll burn his little pads.

Thanks!

 

[Rae1889]

lol aw, doggie shoes! lol i think they look so funny. and the dogs try to shake them off. lol

its good to hear that all of you are doing so well! I like to hear that. You guys deserve a break with the seizures!

hugs to all of you! and a big treat of Umbro!

 

[Crystal11]

LOL Umbro needs to wear his shoes badly- he is a punk and refuses to wear them. Its time for training!
My instructor told me to put some bengay cream on the velco straps because its a horrible taste and smell to dogs. He kicks them off too but you are supposed to tighten them as much as possible but don't cut the circulation off- that will really make them jump and kick etc.

The shoes are red and medium size since my little boy is abour 60lbs.. But he thinks he is a puppy and I find him sleeping on my bed in the morning. Sometimes he lays on my feet and my back hurts because I try to move in my sleep..

They are Ruffwear shoes and they kinda expensive but they actually look like human shoes with a thick rubber sole and a neat design. He looks so cute in them and he is thinking:
"Mom, I hate you right now and I am a dog I should'nt have to wear shoes!" Ow! My Paw are burning, Mommy " LOL.

Take care
Crystal

 

[Endless]

Thanks, Crystal. That's a GREAT hint about the Bengay.

I'm going to add that I'm doing pretty well right now, too. Maybe except for being ultra-tired and depressed. But the seizures are pretty good. Before meds I had 2-3 simple and complex partials per day, now down to 1 simple partial per week. I can definitely handle one simple partial a week.

Because of the tired and depressed thing the doc is retrying Lamictal with me. I'm staying on the trileptal while I ramp up on the Lamictal. Hopefully this time it'll go okay. I got a rash last time. So this time I'm on two different antihistamines morning and night, and this steroid cream stuff I put on my body (not cortisone, something else). Hopefully between all this the rash will never pop up in the first place.

I'm really excited because when I'm just on the Lamictal I'll have my mind back!

I love no seizures. :rock: I didn't realize how awful they were until they went away!