Medical Forum / Diseases and Disorders / Arthritis / April 2005
OTP: 2 years of Epilepsy today.
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Kelly Cobb - 24 Apr 2005 17:26 GMT Today marks two years since our journey with epilepsy began. I can't believe that 2 years could go by so fast, with me still feeling like it was just a week ago. It helps that Rachel hasn't had a seizure in 10 months. Those first 14 were such a rollercoaster of hospital stays, meds., side effects and nightmares that I thought I'd never recover.
We'll see the neuro. in June, and I suspect that he'll want to wean Rach off one of the meds. she's currently taking. He's wanted her on monotherapy since this started, but it just didn't work that way for her. The big change came when we added Keppra. She's only had 3 seizures in the 15 months since she started taking it.
I don't mind saying that I'm scared. Things have been going so well for her and I hate to rock the boat, but if she can go another year without seizures, she may well be seizure free for life. I won't think about her teen years and experimentation right now, it makes me nervous. We're doing lots of talking about consequences and we'll have to hope for the best.
I have been remembering that first awful day all morning and feeling very grateful for all the support and love that was shown for us from this community. Thanks so much for the outpouring of affection for a little girl that you've never seen and her gimpy mom. When I say I love you, I mean it.
Kelly C.
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RoseB - 24 Apr 2005 17:27 GMT Wow! The time HAS gone by quickly.
I wish that whatever medical decisions are made. they are the right ones and that Rachel remains seisure free.
(((((((((((((Kelly and Rachel)))))))))))))) Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB
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me2@dn14.net - 24 Apr 2005 18:19 GMT >Thanks so much for the outpouring of affection for a little girl >that you've never seen and her gimpy mom. When I say I love you, I mean it. > >Kelly C. We love you Kelly, just like Rachel, and who wouldn't with such a great mom as that?
Wishing you a totally worry free medical future with Rachel, let's face it, you'll probably have other things to worry about come the teenage years! lol
take care
-- Andy
Kelly Cobb - 24 Apr 2005 21:56 GMT > >Thanks so much for the outpouring of affection for a little girl > >that you've never seen and her gimpy mom. When I say I love you, I mean it. [quoted text clipped - 12 lines] > -- > Andy Thanks so much, Andy...I can't believe I didn't think to post at UPSA as well. I know that all my friends across the pond were thinking of us, too.
We are having a lovely day here and the sun has finally come out. Unfortunately, this means I should be doing outside chores, instead I'm sitting inside on the 'puter. Such is life.:o)
Kelly C.
Jan Brown - 24 Apr 2005 19:12 GMT > I have been remembering that first awful day all morning and feeling very > grateful for all the support and love that was shown for us from this [quoted text clipped - 4 lines] > > Kelly C. Brilliant news Kelly. It's so nice to read such good news, and fingers crossed it stays good for you both. Janet (UK)
Jayne - 24 Apr 2005 20:04 GMT > I have been remembering that first awful day all morning and feeling very > grateful for all the support and love that was shown for us from this [quoted text clipped - 4 lines] > > Kelly C. I can hardly believe that it has been 2 years Kelly - how time flies. Great news that Rachel is doing so well, and I hope her doctor visit in June goes well.
Jayne
DeeTee and Bob Taggart - 25 Apr 2005 02:18 GMT {{{{{{{Kelly, Rachel and Family}}}}}}}}}
DeeTee ________________________________ DeeTee and Bob Taggart http://www.marykay.com/dtaggart3 http://mysite.verizon.net/vze8fwov/ ________________________________
>> I have been remembering that first awful day all morning and feeling very >> grateful for all the support and love that was shown for us from this [quoted text clipped - 10 lines] > > Jayne Cindy - 24 Apr 2005 20:20 GMT I am so glad that the medication that Rachel is taking now is helping..I know it must be scarey to think of weaning her off anything... Praying for Gods hand in all of this.. Hugs Cind
> Today marks two years since our journey with epilepsy began. I can't > believe [quoted text clipped - 27 lines] > > Kelly C. Ashley - 25 Apr 2005 01:30 GMT Kelly--
I'm so incredibly happy for your entire family! We've taken Rachel in as our own little girl. Give her a big hug & kiss for me, hopefully I will get to meet the two of you soon. Thank you for all of your love and support as well. This past month has been rocky-- thanks for everything. :)
-Ashley
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Kelly Cobb - 25 Apr 2005 04:22 GMT > Kelly-- > [quoted text clipped - 5 lines] > > -Ashley Thanks, hon. Do you think you'll be able to make it to Portland? I would so love that. Rach has her neuro appt. the day before Gimpfest starts, so I'll have all new news to share.
Oh yeah, I'm already stocking up on chocolate treats...found some 70% and some 85% dark chocolate bars.
Kelly C.
Ashley - 25 Apr 2005 04:42 GMT > Thanks, hon. Do you think you'll be able to make it to Portland? I would so > love that. Rach has her neuro appt. the day before Gimpfest starts, so I'll [quoted text clipped - 4 lines] > > Kelly C. I don't have a job right now so I don't know how I could afford it. I really do wish I could make it. DJ and I are trying to figure something out with my finances (like how I'm going to pay bills next month) so keep your fingers crossed and prayers coming.
Mmmmm. Dark chocolate. You are seriously tempting me. :P
-Ashley
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Duckie - 25 Apr 2005 01:32 GMT Kelly: print out my reply to this and give it to her to read quietly in private.
Freshman year I discovered that the girl across the hall was taking the same white capsule with the orange racing stripe that I was taking - Dilantin. She was horrified that I knew what it was but I had a good mind set over my epilepsy and tried to share that with her. Several months later, she comes to me to tell me she had had a seizure while smoking marihuana in a car on a date with a pre med student from Chapel Hill. She said she was lucky she was with him as he actually knew what to do. After the visit to the ER, they told her to stay away from the dope as it messed with the electrical circuits in her brain and that was probably what set off the seizure. She came to tell me so I wouldn't make the same mistake. Guess I am practically the only person to graduate college in 1971 who never smoked the stuff at all. So as one epileptic to another, just wanted you to have the warning. Duckie
> Today marks two years since our journey with epilepsy began. I can't believe > that 2 years could go by so fast, with me still feeling like it was just a [quoted text clipped - 20 lines] > > Kelly C.
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Kelly Cobb - 25 Apr 2005 04:15 GMT Thanks for this, Caroline. Can't wait for June. Don't be surprised if I cry on you when we meet.
Kelly C.
> Kelly: print out my reply to this and give it to her to > read quietly in private. [quoted text clipped - 18 lines] > the warning. > Duckie Duckie - 26 Apr 2005 04:33 GMT You cry all you want to. Just glad to be here or there for you. I've been listening to the River Mix MaryZ sent me. It is playing in my car all the time. First the Gimpfest and then the River. It will be a full June. So did you say you were bringing chocolate??? Duckie
> Thanks for this, Caroline. Can't wait for June. Don't be surprised if I cry > on you when we meet. > > Kelly C. Kelly Cobb - 26 Apr 2005 04:35 GMT > You cry all you want to. Just glad to be here or there > for you. I've been listening to the River Mix MaryZ > sent me. It is playing in my car all the time. First > the Gimpfest and then the River. It will be a full June. > So did you say you were bringing chocolate??? > Duckie Yup, I got four big bars of Lindt dark chocolate. Two are 70% and two are 85% cocoa. Fortunately, I don't really care for dark, so they'll be safe in the house until the gathering.lol I am planning to pick up a couple of bottles of a really nice, whole cluster pinot noir, put out by the local winery, too. I love it and know others will, as well.
Kelly C.
Duckie - 26 Apr 2005 05:40 GMT yummy
> Yup, I got four big bars of Lindt dark chocolate. Two are 70% and two are > 85% cocoa. Fortunately, I don't really care for dark, so they'll be safe in [quoted text clipped - 3 lines] > > Kelly C.
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Nann Bell - 26 Apr 2005 15:05 GMT > Yup, I got four big bars of Lindt dark chocolate. Two are 70% and two are > 85% cocoa. Fortunately, I don't really care for dark, so they'll be safe in [quoted text clipped - 3 lines] > > Kelly C. Dang! sure wish I could be there, but the ordination date had better not change now. My mom's bought her plane ticket up and Mike ordered the invitations yesterday. So I guess I'll have to be satisfied with our celebration here.
 Signature Nann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare
Kelly Cobb - 26 Apr 2005 16:11 GMT > > Yup, I got four big bars of Lindt dark chocolate. Two are 70% and two are > > 85% cocoa. Fortunately, I don't really care for dark, so they'll be safe in [quoted text clipped - 8 lines] > invitations yesterday. So I guess I'll have to be satisfied with our > celebration here. We'll miss you and Mike, Nann. I was really hoping to meet you.:o(
Kelly c.
Mary Z - 25 Apr 2005 04:18 GMT >Today marks two years since our journey with epilepsy began. I can't believe >that 2 years could go by so fast, with me still feeling like it was just a >week ago. It helps that Rachel hasn't had a seizure in 10 months. Those >first 14 were such a rollercoaster of hospital stays, meds., side effects >and nightmares that I thought I'd never recover. I am delighted she is doing so well we were all so scared when the seizures started I am glad they have found the right mix. Having RA you appreciate that sometimes finding the right mix can be a challenged. I hope the drug withdrawl goes well. We are looking forward to seeing Rachel in June. -- mZ
Visit my website: http://www.mzuschlag.com
Kelly Cobb - 25 Apr 2005 04:23 GMT > On Sun, 24 Apr 2005 09:26:43 -0700, "Kelly Cobb" .
> I am delighted she is doing so well we were all so scared when the > seizures started I am glad they have found the right mix. Having RA > you appreciate that sometimes finding the right mix can be a > challenged. I hope the drug withdrawl goes well. We are looking > forward to seeing Rachel in June. -- mZ Mary, expect a very tearful, but happy me. I am so looking forward to seeing everyone and really hope that everybody can make it.
Kelly C.
d'huit - 25 Apr 2005 04:25 GMT two years. w0w. in the kind of odd way i have of looking at these kinds of things, i'm glad those two years went by so fast for you, kelly. (i know how agonizingly relative time can be, especially when you are in the moment, when that moment is difficult.) to me, your retrospective perception means a lot of healing has also happened for you; and that's good and seems to me like a blessing for your whole family, cuz families need their feminine strength to keep them balanced and you've definitely been it, lady. ((((((((((((kelly)))))))))
rach is one majorly resilient kid and an amazing little girl, but then, "you don't plant peas and grow potatoes."---as a little irish nurse once told us.<smile> she remains in my thoughts and prayers, as do you all. i'm so glad rach has been doing so well. and somehow, it feels to me like she's going to continue to do so. mmmmm . . . "seizure-free for life" sounds like words for a powerful prayer or mantra. i know i can get behind that desire for rach.
as for you being scared---ummm . . . did you really expect not to be? i don't think you'd be normal if you weren't scared. i'd certainly be, too; heck, we'd all be. i mean, you've been on heightened alert status for two years now, and getting that intermittant chance to take a breather, now and then, has not come easily to you. so, i'm positive it certainly has felt like it's been a wild ride for you.
you and rach have been easy to love and support, hon. and heck, you've given so much back, in so many ways, especially in sharing your and rach's challenges and allowing us to think positive thoughts for you and to open our hearts to you both. i mean it too, when i say i love you both, gimpy mom and special little girl.<smile> i'm grateful you are in my world.
kate
> Today marks two years since our journey with epilepsy began. I can't > believe [quoted text clipped - 27 lines] > > Kelly C. Kelly Cobb - 25 Apr 2005 05:37 GMT as for you being scared---ummm . . . did you really expect not to be?>
> kate You know, Kate, this statement kept drawing my eye over and over. I have been sitting here trying to analyze why it struck me so. The simple answer is, yeah I expected to someday have all the answers and be confident in the decisions I made, and secure in the knowledge that life would work out in a certain way. HA!! OMG...I think I just grew up!LOL
You know, as a child, I thought life worked that way. You grow up, get married, get a job, have kids, pay bills, and know everything. You are self-confident, self-assured, intelligent and have all the answers. You're not afraid of the monster under the bed, and you don't need to leave the bathroom light on anymore.
Crappy part is, the monster came out from under my bed and the covers lost their magic. It bit me on the a.s and nothing has been right since. I've got it huddled in the corner now, but it's still watching me, waiting for me to turn out the light.
I think I need to go bed, this is enough self-realization for one day.
Love ya, Kelly C.
Jo Firey - 25 Apr 2005 05:50 GMT Being grown up sure isn't anything like we thought it would be is it? Other than really great and rewarding.
Now I wonder how old I was when I finally realized that the feeling of being "in control" I was looking forward to was never going to happen, and it wasn't happening much for anybody else either.
The up side is everything isn't all our fault either. That part is kind of a relief.
Jo
> as for you being scared---ummm . . . did you really expect not to be?> > [quoted text clipped - 25 lines] > Love ya, > Kelly C. Kelly Cobb - 25 Apr 2005 05:59 GMT > Being grown up sure isn't anything like we thought it would be is it? > Other than really great and rewarding. [quoted text clipped - 7 lines] > > Jo I think I'm slower than the average bear, Jo. Thanks for making me feel like I'm not alone out here.
Are you feeling better tonight?
Kelly C.
Jo Firey - 25 Apr 2005 06:12 GMT >> Being grown up sure isn't anything like we thought it would be is it? >> Other than really great and rewarding. [quoted text clipped - 17 lines] > > Kelly C. The black eye faded to just a little yellow really fast and there is no pain from the surgery. A little dizzy and a whole lot anxious if I let myself think about it.
The cover over my ear and the surgery site itches like crazy. Time for benedryl and bed.
Jo
Kelly Cobb - 25 Apr 2005 06:26 GMT > The black eye faded to just a little yellow really fast and there is no pain > from the surgery. A little dizzy and a whole lot anxious if I let myself [quoted text clipped - 4 lines] > > Jo Sleep tight...I've still got the monster cornered. He's actually looking a little nervous now...that's good.
Kelly C.
Duckie - 26 Apr 2005 04:37 GMT Bwhaaaaaa!!!! quack
> Sleep tight...I've still got the monster cornered. He's actually looking a > little nervous now...that's good. > > Kelly C.
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Ashley - 25 Apr 2005 07:23 GMT > I think I'm slower than the average bear, Jo. Thanks for making me feel like > I'm not alone out here Sadly, I'm a lot older emotionally/mentally than most of my peers. I've lost a few friendships because of that. Having chronic illness has done that to me, I think. I don't regret "growing up" so quickly in the past two years, well, this past year mostly, but sometimes I want to just be 20 and have stupid reckless fun. On the flip side, I probably wouldn't have the relationships I do right now if I hadn't grown up these past couple of years.
-Ashley
========= ~~AC.
Nann Bell - 25 Apr 2005 21:18 GMT > Sadly, I'm a lot older emotionally/mentally than most of my peers. I've > lost a few friendships because of that. Having chronic illness has done [quoted text clipped - 3 lines] > have the relationships I do right now if I hadn't grown up these past > couple of years. Curiously, I never *felt* older than my peers. I mostly felt "out-of-step with them, just plain weird! (ok, no comments from the peanut galery! LOL) Well, from the time I originally went off to college anyway. It was when I met my husband who is 12 years older than I that I began to be told I was much more mature than others my age. heehee, he told me I was more mature than a lot of the women *his* age that he dated!
The really surprising part (to me) came this past winter when we got an email group of a bunch of my high school buddies going. We had a large, close, multi-year group that were good friends in our high school band. It is still the same group of quirky, diverse, sometimes counter-cultural, but still mature, logical & rational people we were in high school. I realize now how being a part of that group set up really high standards for friendship in my mind. Thank goodness ASA came along to tide me over in the diverse, tolerant, accepting friendship category!
(It was something when I was down in Florida. Five of us got together for lunch. One person, with great reluctance, drug himself away to return to work after a couple of hours. The other 4 of us hung out and talked for 5 and a half hours! The old friendships were there immediately. we're all looking forward to a planned reunion in August.)
Oh, but I got off track. (big surprise there, huh?) The funny (curious, not ha-ha) thing Ashley, is that down the road, the early maturity will allow you to take risks that your peers won't be able to. It's something about having to clarify what is really important to you and having to make serious choices and decisions early on that helps you learn what you truly value earlier than many folks do. Then you are able to live you life as you want to rather than as society expects you to. I suspect you had a lot of that already, before chronic illness, from what you've said in the past. It just realy struck me though, coming when I've re-connected with these old friends. i realize now that in many ways we were more mature than our peers back in high school, thanks to the adults around us. Now when I hear about the vaiety of interesting lives folks have led and the ways people have re-invented themselves throughout the years, I realize how much freer we've been as adults because of that early maturing and clarifying of values.
You'll still find ways to be reckless, they'll just be your ways rather than the crowd's ways.
your comments obviously got my mind wandering...........
 Signature Nann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare
d'huit - 25 Apr 2005 08:23 GMT > as for you being scared---ummm . . . did you really expect not to be?> > [quoted text clipped - 25 lines] > Love ya, > Kelly C. hey, sweetie, you are not alone in that boat. i'm pretty sure you already know that. i think most of us thought life was gonna work out the way you thought it would work. i know i did. and sometimes, i still do cuz i'm kind of a bit cocky at times and i still have a bit left of an innocent/naive streak that i try hard to hide (cuz i'm 57 years old, for pete's sake!). and i really do still leave the bathroom light on, and you know what? that's ok. hear me? that's ok.
yeah. you're right. it definitely is a crappy monster, kelly. is it that nothing has been "right, since" or that nothing has been "the same," since? big difference, hon. "right" doesn't have to be "the same" and change can be very challenging to all our levels of awareness, even though it might be what's right for us, even though we cannot necessarily know that immediately and when we most feel the need to know that.
you know, butch was truly my very best friend, and of course my lover, husband, helpmate, a fiercely independent man with incredible depth and breadth, wisdom, compassion and people sense and what a delightful sense of humor he possessed. but there came a time when he let go of almost all that he was and became childlike, vulnerable, needy and dependent for his last few months---i want you to know that i don't mean that as insulting to him in any way at all, as it was simply part of the stresses of his recognizing his decline and of his dying process.
do you know what the toughest thing was, that i had to deal with, when butch was so ill and dying? it was facing the HUGE monster of my own need to not make any mistakes, to be perfect, to be totally conscious of details (all the nuanced details of how he was doing, feeling and so on), being on top of everything, anticipating everything i could think of that "might or might not" happen to him, trying so hard not to leave anything overlooked/unnoticed, trying too hard, too hard to be everything "i thought" he needed and wanted me to be for him, because he was depending on me (he told me he was depending on me and thanked me for letting him)---the enormously crushing pressure i put upon myself was the biggest monster i've ever had to face.
part of that monster was that i never felt adequate to the task, never felt i ever "got there" (got a handle on it all nor on all of his needs), wasn't confident, was definitely afraid that i wasn't good enough, wasn't smart enough, wasn't doing enough nor doing things right or correctly.
and the monster got bigger and bigger with each of his new medical complications, with each episode and trip to ER and each new indication that he wasn't getting better, which to me meant i wasn't making anything better, and that i was losing ground as he lost ground, and that i was failing him. so, guilt was obviously part of that monster.
kelly, sweetie, it is impossible for any one person "to have it all together, to be on top of all of it" and "to keep it all together", all of the time and indefinitely, no matter how great the need is nor how much the other person depends upon us and needs us (even hospitals have teams that work together on individual cases). that is such a difficult thing to accept, when it is your child or somebody you love who is vulnerably childlike. it's especially hard when the voice in our head keeps telling us there's more, more we can do, more we can know, more we can understand, more we can work on or organize or prioritize, more we can be alert to, more we can anticipate, more, more . . . but, hon, sometimes, we just absolutely must trust that we've done the best we could do, in that moment-----with the tools that we have, with what we know, with what that particular moment gives us to deal with----and that's what kills the monster. trust.
i was blest in that alex was a pretty healthy kid growing up. but, i knew from the beginning (because i observed and read a lot) that there would always be moments, (even with healthy kids), when i'd second guess myself, feel a little guilty, inadequate and some of the rest of it. and i knew from the beginning, that i had to learn to trust myself and my instincts. honestly, i thought i did ok, maybe not great, but ok with that, with alex. but, i never, EVER, saw it coming with butch and truthfully, i was slammed and blindsided by it all. so, i can only imagine what you must be feeling, kelly. ((((((((((((((just because hugs))))))))))))
kate
Kelly Cobb - 25 Apr 2005 15:18 GMT ((((((Kate))))))
I could sit in a therapist's chair for years and never clean out this particular closet!:o) Somehow, it's okay, though because I know why. I've always had this fiercely independent attitude and, no matter what happened, I was going to take care of myself. The problem is that I had to expand my circle to include first Brett, and then Rachel. The walls of a bubble get thinner the bigger it gets.
When Rach was in the hospital Brett broke and admitted that he just couldn't handle what was happening and was so glad that I was the 'tough one'. heh. Yeah, right. I was numb with fear, but couldn't tell him that right then and his mom kept saying how brave I was and what a good mom I was. I'd take a shower and just cry. I realized that's how I've handled all my big traumas...I withdraw. I go through the motions, do what needs to be done, but I harden externally. I should have been a doctor.lol
Anyway, thanks for understanding and sharing your pain about Butch...I can't even imagine that kind of pain, it would send me to the bin.
Kelly C.
> hey, sweetie, you are not alone in that boat. i'm pretty sure you already > know that. i think most of us thought life was gonna work out the way you [quoted text clipped - 69 lines] > > kate Duckie - 26 Apr 2005 04:42 GMT Beautiful -- thanks for sharing all of that Kate. Duckie
>>as for you being scared---ummm . . . did you really expect not to be?> >> [quoted text clipped - 99 lines] > > kate
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Nann Bell - 25 Apr 2005 20:16 GMT I think we all felt that way as kids, Kelly. And the older we get, the more we realize how deluded we were. LOL What really amazes me is how the adults around us seemed so confident and knowledgable to us when we were kids when we know realize how much they still didn't know. I guess it's not so much that we know it all as we get older but rather that we just know better about how to navigate it all.
and we so want to have all the answers for those we love ........
 Signature Nann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare
> as for you being scared---ummm . . . did you really expect not to be?> > [quoted text clipped - 21 lines] > Love ya, > Kelly C. escrita@gmail.com - 25 Apr 2005 07:43 GMT > Today marks two years since our journey with epilepsy began. I can't believe > that 2 years could go by so fast, with me still feeling like it was just a [quoted text clipped - 20 lines] > > Kelly C. Nann Bell - 25 Apr 2005 20:16 GMT I can't believe it has been that long! Now that I think about it, we were still in Boston when this odyssey began for your family. I can barely begin to imagine what a delight it must be for all of you to have Rachel go so long without a seizure, especially after those terrifying first months. Got my fingers crossed that all continues to go this well.
 Signature Nann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare
Squirrely - 25 Apr 2005 21:57 GMT Hey Kelly wishing the best outcome for this situation.
I am hoping she will be seizure free from now on out. Keep us posted to how it is going.
Wishing the best for your whole family.
 Signature Love and hugs to all Good thoughts coming your way too.
Squirrely Jo
> Today marks two years since our journey with epilepsy began. I can't > believe [quoted text clipped - 27 lines] > > Kelly C.
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