Just need to talk...


Posted by Joanne Matuzas , Feb 19,2001,17:20   Archive
A few days ago I got the worst case of flu that I've ever had...still
have 102 temp and ache all over--HMO sent a note over to work recommending 3 or so days off this week--I have a project due--but my
health is more important--priorities, yes? I especially want to get
well because my botox injections are scheduled a week from tomorrow and
it is difficult to reschedule with this neurologist at the HMO--booked
solid for months--I also have some things to discuss with him as I
have recently posted on the board regarding positioning of the shots and meds.
Also, you all recall my mentioning my golden retriever, Beau,
had his leg removed back in Sept. for bone cancer? He just finished his
last chemo treatment but is now having some problems with his hip which
is making it more difficult to walk. Then, this morning he came running
into my room about 7am and the next thing I knew, he was having a
seizure--I actually thought he might be dying on me--I could hardly get my head off the pillow I felt so sick from the flu--anyway, please keep me in your prayers about all this--I trust I'll know when it's the right time to let my golden go...Thanks so much for listening--I appreciate you all very much although I don't post as often as some of you.

Love, Joanne M. San Diego, CA




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Re: Just need to talk...

Re : Just need to talk... --- Joanne Matuzas
Posted by Mindy , Feb 19,2001,17:46 Top of Thread Archive
Hi Joanne,
So sorry to hear you are feeling so sick.
It must have been very frightening to see your dog like that,
especially after all he's been through.
For sure I'll keep you and Beau in my thoughts and prayers.
How about a nice hot bowl of cyber chicken soup and a hug :-)
Mindy



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Re: Just need to talk...

Re : Just need to talk... --- Joanne Matuzas
Posted by June in Toronto (June Floyd,June in Toronto), Feb 19,2001,17:50 Top of Thread Archive
Joanne, you are having more than your share of problems right now. My prayers are with you.

June in Toronto




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Re: Just need to talk...

Re : Just need to talk... --- Joanne Matuzas
Posted by Priscilla R , Feb 19,2001,18:54 Top of Thread Archive
Joanne
I'm so sorry about everything you are going through. I will keep you and your dog in my prayers. My best to you. I really hope you get well soon.



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Re: Just need to talk...

Re : Re: Just need to talk... --- Priscilla R
Posted by colleen , Feb 19,2001,19:37 Top of Thread Archive
Joanne sorry you are feeling so bad .Beb makes you feel bad enough.Maybe you will feel better some.

God Bless Colleen



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Re: Just need to talk...

Re : Just need to talk... --- Joanne Matuzas
Posted by Sally - in - Idaho , Feb 19,2001,21:37 Top of Thread Archive
Oh Joanne, I am so sorry about your illness and Beau's new problems. Don't give up on him too soon. Two years ago, our Kelly was so terribly sick and running a fever as high as any dog ever lives with, and after a couple of days in the hospital, a vet encouraged us to euthanize him. We couldn't bear the thought right then and said we would take him home over Thanksgiving and give him lots of love and care, then make our decision the first of the week. By the Sunday night, he was getting perkier, Monday morning he was much better and we canceled the appointment with the veterinary hospital at the college, called our own vet and told her that Kelly was doing great and we'd continue as we were doing. He has had ups and downs, but is still bouncing at age 11. It is very heartbreaking to know when to let go.

I am praying for you both.

Sally




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Re: Just need to talk...

Re : Just need to talk... --- Joanne Matuzas
Posted by Evelyn , Feb 20,2001,00:32 Top of Thread Archive
Joanne,
Please stay down as long as you can. Get all th rest possible. This flu is really bad. Sounds like what I had, but my temp didn't go quite as high. It really hangs on. My husband has been sick for almost three weeks, and it's till hanging on.
I'm sorry about your dog. Must be hard.
I pray for all of you who have to deal with this disorder. I will remember your special needs too.
Evelyn



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Re: Just need to talk...

Re : Just need to talk... --- Joanne Matuzas
Posted by Joanne Matuzas , Feb 20,2001,14:09 Top of Thread Archive
Thank you all for your responses..I really appreciate that..
Beau has not had another seizure since the first one which is about
day and a half---good news so far. My fever has broken so it'll take
more restraint and self control to keep myself quiet now as I start
to recover. The blepharspasm is becoming more pronounced so I am
slowly improving although still really weak. Love to you all,
Joanne M. San Diego, CA



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Re: Glad you are some better.

Re : Re: Just need to talk... --- Joanne Matuzas
Posted by Shirley-Arkansas-USA , Feb 20,2001,14:42 Top of Thread Archive
Joanne, It was good to hear that you are doing some better. Glad that your fever is down. Take care of yourself. I hope that Beau's problem was just an isolated incident. Seizure are difficult to watch and you feel so helpless.
Hang in there and keep us posted about you and Beau when you feel like you can. We do care about you.

Shirley in AR.




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Re Joanne, BEB more pronounced

Re : Re: Just need to talk... --- Joanne Matuzas
Posted by Mindy , Feb 20,2001,18:03 Top of Thread Archive
Hi Joanne,
Glad to hear you're feeling a little better.
Regarding your BEB being more pronounced, I have found that when
I'm not feeling well my symptoms act up.
I haven't been sick in a long time and then last month I had a cold,
and I purposely didn't change any of my BEB meds, and sure enough
when I started feeling better, my eyes got better.
So hang in there and get plenty of rest.
Best Wishes,
Mindy



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HELLO FROM NEW ZEALAND

Re : Re Joanne, BEB more pronounced --- Mindy
Posted by Pam Brockwell , Feb 20,2001,20:59 Top of Thread Archive
Hello
I am new to the BEP Bulletin Board and looking for any information anyone may have on Beph. I am new to all this. I picked up one of your emails where you mentioned medication for Bep, what is this. I am more than likely starting Botox Injections soon.

I would love to hear from you as I am not in touch with anyone in New Zealand.

Cheers Pam




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Re: HELLO FROM NEW ZEALAND

Re : HELLO FROM NEW ZEALAND --- Pam Brockwell
Posted by jenny , Feb 21,2001,00:08 Top of Thread Archive
Hi Pam. I am from nz aswell and I have had BEB for 12yrs. I have been having the BOTOX for 9years and it helps me. I am 44 and live in the Waikato. I would love to help you anyway I can.
HELLO to all of you out there. I read all the letters on a regular basis
and have found you all very interesting and helpful.
Well anyway Pam, if I can be of any help to you, I surely will. You can email me at mutherduk@hotmail.com
Cheers, Jenny



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Re: HELLO FROM NEW ZEALAND

Re : Re: HELLO FROM NEW ZEALAND --- jenny
Posted by June in Toronto (June Floyd,June in Toronto), Feb 21,2001,06:13 Top of Thread Archive
Hi Pam and Jenny in New Zealand - welcome to the bulletin board. I live in Toronto, Ontario, Canada and have had beb for over 6 years - I get botox injections every 4-6 months and, except for side effects after the injections for about 3-4 weeks, they do well by me.
You should visit the BEBRF web site at:
http://www.blepharospasm.org/
to learn about this disease amd also read the back posts for a lot of good information. The members of this board are a wonderful group - you will get lots of help, laughs and information here. Post away - people will be there for you both.
Best wishes
June inToronto



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Re: HELLO FROM NEW ZEALAND

Re : Re: HELLO FROM NEW ZEALAND --- jenny
Posted by Mindy , Feb 21,2001,13:25 Top of Thread Archive
Hi Jenny from NZ.
A warm welcome to you. (At first I thought you were our other Jenny)
Glad to hear you get good results from your Botox :-)
Hugs,
Mindy



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Re: HELLO FROM NEW ZEALAND

Re : HELLO FROM NEW ZEALAND --- Pam Brockwell
Posted by Mindy , Feb 21,2001,13:20 Top of Thread Archive
Hi Pam,
A very warm welcome to you.
There are many oral medications as well Botox.
It takes a lot of patience to find what works best for you.
How our bodies react to meds. are as individual as we are.
I'm 47 and got this when I was 40.
I have tried a long list of oral meds. and botox and alternative
suppliments and treatments.
I would stress to you that proper rest, positive thinking and
any form of stress management that you enjoy along with
prayer and laughter is the best medicine.
Hugs,
Mindy in New York



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Re: HELLO FROM NEW ZEALAND

Re : HELLO FROM NEW ZEALAND --- Pam Brockwell
Posted by Sally - in - Idaho , Feb 21,2001,20:51 Top of Thread Archive
Dear Pam and Jenny ... Welcome to you both here on this BB. It's a great place to come for ideas, hints, sharing and griping. We also have a lot of fun when nothing too serious is going on.

I have been diagnosed with BEB for about two years, after several years of seeking a diagnosis. My mother also had this disease. I have been having Botox injections every two months since October 1999. They help quite a bit, at least with the spasms. Nothing that I've found helps with the photosensitivity, which is perhaps my worst symptom.

It is a disease that stays with us so we have to get through our initial grief of the changes it makes in our lives, then adapt and adjust and go on living.

Mindy brought out many good points ... including prayer and humor.

Please tell us more about yourselves and stay with us. We're always happy to "see" new faces.

Sally in North Idaho, whose mother just had a friend drown on the first day of her vacation while snorkeling off Cook's Island ... isn't that near NZ?




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Re: Sally - snorkeling

Re : Re: HELLO FROM NEW ZEALAND --- Sally - in - Idaho
Posted by Mindy , Feb 21,2001,23:45 Top of Thread Archive
Oh my goodness Sally,
How awful, that is so sad. I'm sure this is most upsetting for your
mother. Snorkeling is usually done in calm waters, I wonder what
happened?
Mindy in NY, I've snorkeled in Key West & Cozumel and loved it,
have no idea where Cook's Island is.



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Re: Just need to talk...

Re : Just need to talk... --- Joanne Matuzas
Posted by grace anne , Feb 20,2001,22:17 Top of Thread Archive
I sure hope you are feeling much much better since you posted the above. I remember having the flu one year (many many years ago when I got the flu shot) and honestly felt i was going to die. So I can emphasize with you. I pray your injections will be placed to give you the most relief, and I pray Beau will be doing much better. It's time both of you get your health back.

graceanne in port orchard who doesn't post a lot either.




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