sela is taking centre stage. her hydracephalus is causing concern. (not enough concern that she can get an ultrasound before march 15, but apparently, concern.) her fontanel area is swollen and spongy looking. because she is follicly challenged, the swollen area is very visible. it looks like something has expanded under her skin and is pushing its relentless way to the top of her head. sela is also vomitting, whenever she hits her head. as you know, sela has always been a vomitter after meals, but for the past two weeks, she is always vomitting after she hits her head. but this is anytime, and a clear expulsion. so, the worry licks at the back of my stomach, and i wait for march 15.
as for me...
this uncertainty is driving me mad. i wake up in the morning with cold fear. i don't know if i am going to be having petit mals. if i am, the day is pretty much a write off, when i am able to talk without dropping the phone, i cancel my day's activities. if i seem to be functioning normally, i think, great! and proceed on with my day. except then i face the risk of being halfway to lunch like i was today, having to cancel, and rush home to bed. and the lunch was with aloo gobi richard, to add insult to (almost) injury.
i can't plan anything. i am getting quite adept at deleting plans, however. i can't have a life. i have never experienced this continual uncertainty and fear. i have so much respect for the epileptics that do have uncontrolled seizures and still have a life. they really are remarkable.
this uncertainty is what bothers me most. i have no idea why this is happening now. i am taking my medication. really. i have never been on this high a dose, ever. and i am so tired of fighting the weight gain/increased appetite that accompanies one of the drugs i am on. wasn't losing weight from triplets enough to prove that i can do it?
this uncertainty, these days of "now we pick up the petit mal seizures from where we left off yesterday..." is so exasperating that i almost, almost feel like stopping my medication and bringing on that grand mal that is lurking in the back of my brain. the forgetfulness, the sore and swollen tongue, the tell tale horizontal red line around it where it was bitten, the aching joints and cramped muscles, possible bruises...it almost seems worth it if it would get this seizure out of my world. my plans.
i am going to see a doctor. this is a big thing for me. epilepsy has always been something i have been ashamed of, (i think it is the "fits" thing...i hate that word, but then again, i hate the word epilepsy. it is an awkward word, and i have always thought that. too many p's and that l in the middle of it...)
but i am going to see a doctor, which means i will acknowledge i need help and i will talk and tell what is wrong. i will cringe when he asks if i am having "fits", but i will be honest. i don't need to be embarrassed, i know this is not my fault.
anything has to be better than this raging uncertainty.
I will be praying for you, Tess, along with little Sela as you both prepare to go to the doctor to find out what's going on.
Here's hoping to find all the answers needed and an easy fix for both!
Posted by: Sandi P. | February 17, 2005 at 06:44 PM
I am there for you Tess.
I love you!
P
Posted by: Auntie P | February 17, 2005 at 10:10 PM
You and wee Sela are in my thoughts *hug* You're a strong woman.
Emotional and mental stress can bring on seizures, I think? You qualify. I'd have had an ulcer long ago.
Never feel embarassed, Tess. We get the bodies that we get, and it's how we deal with the limitations that make us who we are.
Posted by: sara | February 17, 2005 at 10:36 PM
I am so sorry that you have SO MUCH to deal with. I sincerely hope that you start to feel better SOON. I am happy to hear that you are going to the Dr.'s and hope that there is an immediate and positive solution to both yours and Sela's issues.
Sending Prayers and warm thoughts for a healthy family:)
Ashleigh
P.S. Your post regarding your husband was beautiful. I get tears in my eyes just thinking about it!
Posted by: ashleigh | February 17, 2005 at 10:52 PM
Tess,
I'm so sorry you are going through this. Although, I once again admire your strength. I will pray that the doctors can resolve the issues you and the babies are having.
You are so precious to me. I love you dearly.
Posted by: Tammy | February 17, 2005 at 11:14 PM
Tess,
Please give Sela's dr. a call about the bulging fontonel. Excess pressure can cause a stroke. My daugther has hydro and was shunted at 10wks. We had one revision at 8mo. Please be on the lookout for "sunset eyes". Think of the bottom eyelid at the horizon and if her pupil sets below that, get her to the dr.
I absolutely would not wait until March 17th.
Posted by: Gina | February 17, 2005 at 11:18 PM
Tess, trust your instincts with Sela. Call the Dr and see if it warrants an earlier checkup. You have so much on your shoulders, I wish I could carry some of it for you. I've known you since high school and have ALWAYS admired your strength and wisdom - getting advice on your health is just another example of the fortitude that comes from the core of you...the fears, doubts and worries are just the castoffs. Deep down you have such grace and power...I am sending you a big, lift-you-off-the-ground,*HUG*. Love Jill
Posted by: Jill | February 18, 2005 at 02:38 AM
Tess-
I got a chance to read your blog since I am home sick with the flu. I must tell you that I cannot express the admiration I have for you as a wife and Mother. I know I have told you how remarkable and amazing I think you are, but after your latest entry, you have gone beyond. Your children as SO lucky to have you as their mother, and magnificent is one lucky guy as well! Just reading your blog inspires me to not only be a better mother and wife, but a better person! You and your family remain in my prayers my friend..
Posted by: Tonya | February 18, 2005 at 02:56 AM
Darling Tess,
I second others here - go to the doctor and push for firstly Sela to get an earlier appointment. I really do think that she needs to be seen sooner than the 15 March. And for you sweetie, you need to get the seizures sorted. Living in a world of uncertainty like that is not good for you. Please take care of yourself. You and the family are in our thoughts and prayers.
Posted by: Trinie | February 18, 2005 at 03:40 AM
Aw Tess - there is nothing worse than UNCERTAINTY!
I am keeping you in my prayers, as well as the wee three.
You are an incredible person and you live each day with such grace even with all of the uncertainty.
Hugs to you,
Karen
Posted by: Karen | February 18, 2005 at 05:41 AM
Have your docs considered the vagus nerve stimulator implant? My cousin has had uncontrollable epileptic seizures for 25 years. They tried every med, every diet, every possible treatment, and nothing cut down the 20-30 seizures she had each month, until she got the vagus nerve stimulator implant 3 years ago. She's now down to about 5 or 6 seizures a year.
Posted by: Moxie | February 18, 2005 at 08:25 AM
Tess,
I'm keeping you and your dear children in my prayers. I do agree with others here, that perhaps the stress is exacerbating the epilepsy so getting Sela and yourself to a doc as soon as possible is the best route. In the meantime, please know you are so loved and prayed for. You are amazing and magnificent yourself Tess!
Love,
Holly
Posted by: Holly | February 18, 2005 at 09:51 PM
Sending good thoughts and prayers for you and Sela.
I agree with eveyone else. Try to get her seen sooner.
and please take care of yourself. Nothing to be ashamed of that you need help
(((((hugs))))))
Posted by: Peggy | February 18, 2005 at 09:57 PM
You and your family are in my prayers. Good luck at the doctor's, Tess. I hope you'll find a good solution for your epilepsy!
Posted by: Devon | February 19, 2005 at 12:35 AM
Hey Tess, you do whatever your gut tells you to do. This is between you, God and your doctor. Listen to your body/mind and follow through. Also a big YO to Mo. I love you Tess-toss-tic-lees.
The Grinch
Posted by: The Grinch | February 19, 2005 at 12:55 AM
Oh my darling, i have been so busy wrapped up in my own life that i hadn't even realized you have so much to deal with. Please reach out if you need help. I will be keeping you in my thoughts and in my heart. lots of love to you
xxoo
Posted by: Tertia | February 19, 2005 at 02:06 AM
Tess dahling, follow your gut. Fingers crossed, I'm thinking of all of you. Love, J
Posted by: Lioness | February 19, 2005 at 05:42 AM
Sorry, am all over the place. Meant to add, and I don't mean to scare you but you are scared already, pressure on the brain of any kind is not good, EVER, do NOT wait till March 15, do not wait at all, throw a fit if need be but make sure she's seen asap. I'm off tomorrow but I'll be reading whenever I get near a computer. And I WILL be thinking of you.
Posted by: Lioness | February 19, 2005 at 05:47 AM
Oh I shouldn't be posting comments right now, SO SORRY abt the "throw a fit if need be", it was absolutely no pun intended. And look here, be ashamed all you want even if there is no reason blablabla, we know there is NO reason and we still feel ashamed of our pathologies, I suppose it's normal within abnormality, there are special verbs for us, you know, you "have fits", I "flake", we should get our Ps and Fs together and throw a consonant party. But your epilepsy is affecting your quality of life and may impair you on and off as a mother so yes, good for you, go see what can be done, your acknowledging you need help when you actually need it is very right and very brave. I'm just brainstorming here but could the higher dose be causing this? There are some meds which after a certain amount start having the opposite effect. Fingers crossed, v happy to hear Carys will be seen earlier.
Much love,
Johnny
Posted by: Lioness | February 19, 2005 at 05:41 PM