just want to talk


Posted by dianne beavers (dianne Beavers,dianne beavers), Mar 04,2002,20:51   Archive
Hi there!
Some of you asked for a little history so here goes... I am 45,divorced with a 15 yearold daughter and 9 yearold son. I'm a teacher assistant with 7 year olds. I love doing things outdoors. My condition started showing more about 5 months ago. By Thanksgiving it was causing me difficulties with driving. Then one morning in January I was driving the kids and myself to school and my eyes just wouldn't stay open.I went to my doctor, from their a neurologist and then to the opthalmologist{hope its spelled correctly} I'm seeing now. He gave me my first botox inj. a week ago. I can't see anything once I start moving in a car and the lights do bother me. I can watch some tv now and handle the computer for short periods of time. I really miss reading with my son. My daughter has to keep me from bumping into trees and fences outside, I walk around with my eyes shut alot. My frustrations rise when I have to ask someone else to drive me everywhere.I live in the country and its at least 10 miles to the nearest little town. I can't even drive out the yard. Work is hard at times on those bad days. My mornings aren't too bad until about noon,when I'm lucky. Sure is hard getting others to understand isn't it. My father has alheizmer's and depends on me for alot. Have headache tonight from straining to keep them open. Patience is short with my kids.I HATE that! I just want to sit down and cry. Need strength. Any suggestions?

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Re: just want to talk

Re : just want to talk --- dianne beavers
Posted by Delaine Inman , Mar 04,2002,21:31 Top of Thread Archive
We're here to listen. Your story and feelings are so familar to all of us. There are several here with young children. I'm 51 and mine are grown, but I have a 5 year old granddaughter I try to keep while my daughter is working 3-12 hour shifts and goes to nursing school 4 mornings a week. Mikayla is in head start for half a day so that helps. I am an RN and haven't been able to work since May of 99. I am on disability. Getting in a moving car is torture. I got a large used conversion van and I can force myself to drive for short errands in town. I am 3 miles from the grocery and drug store and about 4 miles to Mikayla's school if I have to take her or pick her up sometimes. It takes everything I've got to drive, but the van helps, because I sit up so high. Klonopin helps me, Botox is not so reliable and I had a partial myectomy in May of 2000. I have terrible days and better days and I can't imagine having to work with this condition it is so stressful and unpredictable. For some work is a good thing. I can work in the yard and flowers looking down and almost feel normal. I have learned to take it a day at a time, rest often and support others when ever I can on the BB, by phone, and with a support group I started. Faith, friends and family help me. The people on BB have taught me more than anyone and is one of my major support systems and life line. The greatest people on earth are found here. My mission is to educate doctors to be more aware and sensitive to our emotional as well as our physical needs by allowing us to be heard and understood. You are not alone.



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Re: just want to talk

Re : just want to talk --- dianne beavers
Posted by June in Toronto (June Floyd,June in Toronto), Mar 05,2002,04:48 Top of Thread Archive
Hi Dianne, thanks for telling us about yourself. Its a really difficult time for you with your young family, your job, and your father - I'm so very sorry for you. Is there any chance that you could go on a short leave of absence from your job (hopefully with pay) so that you could collect yourself and give the botox a real chance to work for you? I had to leave my job but, as I said once before, I was of an age that I could and my children have all grown and left the nest. I'm sure its difficult for your children to understand what's going on with Mum and, in fact, for Mum herself to figure out what's going on as well. This is a strange disease to saythe least!

We are here to listen - try to stay as calm as possible (easier said than done), be as good to yourself as possible (even harder) and vent anytime you want.

June in Toronto (beb/meige)




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Re: just want to talk

Re : Re: just want to talk --- June in Toronto
Posted by Ann Doyle , Mar 05,2002,07:53 Top of Thread Archive
I know for 5-6 weeks before my next Botox shots are due, my eyes stay completly closed. I can hold one up a bit for a short period of time to get my bearrings. I don't usually leave the house. I become depressed and not much fun to be with. My husband has always been a patient man but he is learning to be even more patient and to think of others more. Your children could be learning patients and other good things that will help them the rest of their lives to be better, stronger people. Ann Doyle



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Re: just want to talk

Re : just want to talk --- dianne beavers
Posted by joyce whitt/NC (Joyce Whitt,joyce whitt/NC), Mar 05,2002,08:10 Top of Thread Archive
Dianne, been there, done that. I am just like you. When I go outside especially in the sun, my eyes shut down and I walk blind. I don't even try to walk to the end of the driveway to get the newspaper anymore, I might wind up in the ditch. Like so many others I had to quit my job which was one mile from my house because I could not drive that far. My eyes closed down on me. I felt and still do feel frustration of having to ask others for help. Hang in there, give the Botox time to work, it will probably take some time to get the corect dosage but hopefully in time it will work.

You are always welcome to just come to the BB at any time, any hour and just let it go - we all understand.

Joyce in NC whose sour dough nixture didn't bubble yesterday so I will have to "feed" it again in a few days with some yeast. Sorry you won't be smelling my bread today.




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Re: No bread aroma???

Re : Re: just want to talk --- joyce whitt/NC
Posted by Sally - in - Idaho , Mar 05,2002,17:55 Top of Thread Archive
Darn! I hurried home from Spokane and quickly turned on the computer, all set to get a whiff of that bread, and now you tell me you have to feed it some more! What's a gal to do when she can't even wake up and smell the bread! Guess I'll just have to whiff the coffee.

Sally in North Idaho where it's windy and dusty today. Weather people are saying snow (?) tonight and tomorrow. But what do they know. We sent all that stuff south.




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Re: No bread aroma???

Re : Re: No bread aroma??? --- Sally - in - Idaho
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Mar 06,2002,04:41 Top of Thread Archive
yes you did! The weather here is finally warming up a bit. Felt like I was in Fargo for awhile.



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Re: just want to talk/Joyce

Re : Re: just want to talk --- joyce whitt/NC
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Mar 06,2002,04:39 Top of Thread Archive
Adding a little sugar also helps feed the starter.



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Re: just want to talk/Joyce

Re : Re: just want to talk/Joyce --- Kathy in Atlanta
Posted by joyce whitt/NC (Joyce Whitt,joyce whitt/NC), Mar 06,2002,18:07 Top of Thread Archive
I feed "Herman" with l cup warm water 3/4 cup sugar and 3 tbls of dried potato flakes. But you have to feed it every 3-5 days and I think I went over the 5 day mark. When it doesn't bubble like it should I just take out the one cup as if I was making the bread, return to "Frig" and feed with yeast several days later. It gives it a boost. If you would like this receipe just e-mail by clicking on my name at the top of this post or anyone else who wish to have the receipe.

Joyce in NC who will feed "herman" tomorrow.




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Re: just want to talk/Joyce

Re : Re: just want to talk/Joyce --- joyce whitt/NC
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Mar 08,2002,06:08 Top of Thread Archive
Normally, i would love your recipe but my kitchen is not large enough to handle the counterspace involved in making bread by hand.



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Re: just want to talk

Re : just want to talk --- dianne beavers
Posted by r coutant (R COUTANT,r coutant), Mar 05,2002,13:12 Top of Thread Archive
Dianne, just want you to know you are not alone in
this.

I'm 42, work part time as a CPA, am a wife, and
am a mother to a 15 year old also, and an eleven
year old. Both of my kids are boys.

I've had this full blown since June of 2001.
I got so depressed this summer I actually didn't
eat well for a couple of months in the summer
and I lost 20 lbs. Ok, so i was chubby and this
is a good thing. So What!!!!!!!!!!!!!!!

My results to my 100 units of BOTOX are variable.
Some days are worse than others. Sometimes the
good results hesitate before surfacing.

Sometimes I can't drive and my husband drops
me off at work in the morning and I catch
a bus home. (actually i have to make a
transfer so it is really 2 buses home.)
I'm pretty indignant over the bus thing.
When i have to, I have to. (I hate it though).

I guess I'm at the "whatever" stage now. Most
of my friends, church buddies, etc. know about
my blepharospasm and most of these people have
witnessed me struggling with a bad day.
I do call my friends and because they've witnessed
things, they are great about helping me with
rides. It hasn't been needed a lot yet, but
they've come through great.

Here is what I think:
1. get a caring doctor
2. involve your friends because you're going
to need to lean on them
3. stay connected to this bulletin board
because I think there is strenght in the
communication that goes on here.
4. try as hard as you can to fight depression
because it is tough for your kids.

Good Luck,

Rhonda Coutant




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Re:Cry!

Re : just want to talk --- dianne beavers
Posted by Sally - in - Idaho , Mar 05,2002,18:02 Top of Thread Archive
Hi DIanne,

You've gotten some good suggestions, especially the list from Rhonda. I'll add one more: Cry. Sometimes it is necessary to get the angst out of the system.

I cannot function at all well in open spaces. I got "trapped" one time in a big parking lot at the mall. The sun was so bright, it was hot, and I became completely disoriented when I tried to walk to the stores. Finally, some people helped me back to my car. After that, my doctor applied for me to have a handicap parking permit, which I do use on occasion when I am in a large parking lot with no other nearby vacant spaces. I have the same problem in large stores and it's necessary for me to have a cart to hang on to in order to keep my bearings and balance. You'll have to figure out all sorts of little "crutches" to help you survive. It is possible and life does go on, just in a different way.

By the way, we throw great "Pity" parties on this BB. When things get really bad for you, let us know and we'll drop by with all sorts of goodies and music and spend a day or evening with you.

Stay with the group here. They're good guys and gals for what ails you.

Sally in North Idaho




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Time for a Pity party for Dianne & Denise!

Re : Re:Cry! --- Sally - in - Idaho
Posted by Delaine Inman , Mar 05,2002,20:01 Top of Thread Archive
You know Sally I think you're on to something. Dianne & Denise should definitely have a good cry and we can throw a great pity party as a group when they are ready. Until then, my best cry happens in the bathtub, the salty tears make great salt water soaks, then you can pull the plug and let your worries go right down the drain to the sewer where they belong. I will give you both a massage and do some relaxation energy work with you, I'll take you to a beautiful peaceful island where the sun won't hurt your eyes and you can sit in the hot tub after the massage and listen and look at the ocean. You'll be holding your beverage of choice with a slice of orange, a cherry and a cute little umbrella. The ocean breeze won't hurt your eyes either. Just say when.

--modified by Delaine Inman at Tue, Mar 05, 2002, 20:06:27




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HAVE A QUESTION FOR YOU

Re : just want to talk --- dianne beavers
Posted by r coutant , Mar 05,2002,19:03 Top of Thread Archive
I WENT BACK & REREAD YOUR POST. YOU'RE ON YOUR
OWN WITH 2 KIDS, YOU LIVE OUT IN THE COUNTRY,
AND SOMEONE IS DRIVING YOU EVERYWHERE.

THE KEY TO THIS I THINK IN WANTING TO CONTINUE YOUR JOB
IS YOUR TRANSPORTATION ISSUE. IS THE PERSON (S) GETTING YOU TO
WORK RIGHT NOW GOING TO DO THIS INDEFINITELY? HOW MANY
OPTIONS DO YOU HAVE IN THE TRANSPORTATION AREA? YOU MAKE
A COMMENT THAT IT IS HARD GETTING OTHERS TO UNDERSTAND.
ARE YOU LETTING YOUR FRIENDS SEE YOU ON THE BAD DAYS SO
THEY CAN SEE WHAT IT IS LIKE?

IN MY OPINION YOU ARE GOING TO HAVE TO GET THE SUPPORT
OF YOUR FRIENDS. AND YOU NEED TO MAKE SURE THERE ARE
SEVERAL & I MEAN SEVERAL FRIENDS IN YOU CORNER.

RHONDA COUTANT
GOING TO CONTINUE DOING THIS INDEFINITELY?




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Re: HAVE A QUESTION FOR YOU

Re : HAVE A QUESTION FOR YOU --- r coutant
Posted by dianne beavers (dianne Beavers,dianne beavers), Mar 05,2002,21:21 Top of Thread Archive
Hi Rhonda
You had some questions about who drives for me and such. My ex- has been taking the kids and I to school of a morning. He works night shifts but is hoping to move to day shifts soon. I don't know what we will do then. My dad still drives in familiar areas so he picks us up in the afternoons at times. My aunt picks us up most afternoons , but I starting to hear more excuses lately. My brother helps when he can. He works 12 hour shifts. The same aunt takes me into town to get groceries. I was informed at work about 2 weeks ago that to keep my job I would have to go back and get an associate degree by 2005. I just don't know what I'll do. I'm up for any suggestions.

Dianne Beavers




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Re: HAVE A QUESTION FOR YOU

Re : Re: HAVE A QUESTION FOR YOU --- dianne beavers
Posted by Delaine Inman , Mar 05,2002,22:30 Top of Thread Archive
Do you have disability insurance? Do you have Family medical leave, sick leave or vacation time built up? You can't get Social Security until you have not been able to work for 5 months. Family medical leave for 30 days then Short term disability and then Long term disability would give you 5 months. That's what I did, but I had disability insurance at work.



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Re: HAVE A QUESTION FOR YOU

Re : Re: HAVE A QUESTION FOR YOU --- Delaine Inman
Posted by Ann Doyle , Mar 06,2002,06:34 Top of Thread Archive
Have you considered moving closer to work on a bus route? Also some large cities have special buses for the handicapped that will pick you up and drop you off. Ann Doyle



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Re: HAVE A QUESTION FOR YOU

Re : Re: HAVE A QUESTION FOR YOU --- dianne beavers
Posted by kerry horton , Mar 07,2002,19:00 Top of Thread Archive
Hi Diane:
If you are considering an associates degree, look into one on the web. Many colleges have programs available on the web now. That would take traveling out of the picture for you - at least for school. Also - you can buy pretty much everything on the web these days as well - from drugstore.com to homedepot.com. Just a thought.
Good luck!!!!!
:) Kerry in CT



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Re: HAVE A QUESTION FOR YOU

Re : HAVE A QUESTION FOR YOU --- r coutant
Posted by joyce whitt/NC (Joyce Whitt,joyce whitt/NC), Mar 06,2002,18:22 Top of Thread Archive
Dianne, Rhonda had some excellant suggestions about friends. Do you attend church anywhere. This is where I have found some wonderful support and met some wonderful people who were willing to take to to doctor appointments, shopping, etc. Also I have developed some wonderful friendships with these ladies. Real Christians will help more sometimes than our families. Sometimes our families just don't understand and a lot of them just don't want to believe something is wrong with Mom/Grandmother/wife. It's like the Ostrich putting it's head into the sand. (Someone recently told me they don't do that in real life - Heck! shot that myth to pieces)

Joyce in NC who rather have her friends take me places - my husband gets cranky when he has to.




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Re: just want to talk?/Diane

Re : just want to talk --- dianne beavers
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Mar 06,2002,04:51 Top of Thread Archive
Diane, the botox takes a while to work and your eyes may do some strange things with the side effects in the meantime. Keep your eyes well lubricated with eyedrops during this time and wear dark glasses for the light sensitivity. Sorry you are having problems.Also try and eliminate as much stress as you can.



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