Author Topic: Updates  (Read 5354 times)

Brendalu

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Updates
« on: February 27, 2008, 06:25:25 am »
Just wanted to let y'all know that my grand daughter finally has a sort of diagnosis for her seizures.  She spent two days at Texas Children's Hospital with her Mom, dancing, playing games, exercising, doing homework, getting stressed by phone calls, teachers telling her papers were missing, she ran the gambit.  The conclusion is that she has a chemical brain imbalance that causes her brain to "short" out.  She has been taken off all meds and put on one to help her sleep for now and she will see another doctor to get the correct med to help even out the imbalance.  While not satisfied with the sort of findings, we are relieved that she has a healthy heart and no tumors or other problems.
I spent yesterday at the Lympedema Care Clinic where I was told I have seconary lymphedema in my legs.  No one else in my family has ever had this problem so I couldn't figure out how I got so lucky.  I was told that it comes from having breast cancer, any kind of stomach trauma (c-sections and a hysterectomy qualified me for that).  So now I go through thirty days of manual manipulation and a compression pump and bandages until my legs are "normal" sized again and then I will be fitted with compression hose.  Dummy me asked how long I would have to wear them.  All day everyday.  Okay for how long?  I got a look that kind of asked me if I was stupid and then when she realized I was sincere she said that it would probably be for the rest of my life!  You don't ever get rid of it and there is no known cure.
I certainly think that this last several years must be pay back time for the good times of my youth!  It gets hot in Houston and I can think of better things to wear or not wear.  Although I was told that as long as I don't have open wounds I can continue to swim daily.  I can't get mosquito bites (I'll tell them I am off limits) and have to garden with gloves on and my dog can't scratch me or bite me and I can't wear fake nails or dark colored polish.  No barefeet.  Shoot me know, I don't do shoes!!!  Not even in the winter.  I have very limited exercises I can now do.  My PT guy is NOT going to be happy!! ::)  I can take walks as long as it isn't too hot and I don't get too tired.  The list goes on.  I'm calling the Scooter Store..........................not.
I'll make it through this, but I already told my insurance company that they better spring for several pairs of these girdles for my legs and feet because some need to be polka dot and tie-dyed.........................
Hugs to all, I am going to have a martini and popcorn.
Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

matti

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Re: Updates
« Reply #1 on: February 27, 2008, 10:00:09 am »
Brenda - Keeping your granddaughter in my prayers.

My best friend has lymphodema in her legs. She recently had a hysterectomy and a couple of lymph nodes were removed. About month after surgery her legs began to swell to double their size. Very frustrating for her as she is a teacher and must be on her feet quite a bit. Like you, she must also wear compression stockings for the rest of her life. She has found a Lymphodema therapist that she sees on a regular basis. She now has a daily 45 minute routine in which she must massage from the neck down in order to minimize the swelling. It's been working well for her.

I am so sorry all this is happening to you.

Big hugs to you!
Cheryl
3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

Brendalu

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Re: Updates
« Reply #2 on: February 27, 2008, 11:39:30 am »
Thanks, Cheryl, I just set up my first five three hour appointments!  I guess when we are going to be opened up we need to ask how many more problems getting rid of one is going to create! I told the doctor that I'm too young for this and then in walks a fourteen year old!
My grand daughter has a great attitude about her situation now that she knows she doesn't need a heart transplant or brain surgery! 
Hugs to you,
Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

OMG16

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Re: Updates
« Reply #3 on: February 27, 2008, 07:54:22 pm »
Gees Brenda and the hits just keep coming.  I suggest that we all get a pair of stocking for you and have a contest and craft day to design the coolest stockings ever.  Then we could mass produce them and pay for our cruises.

I garden in my bare feet also so we will have to design a pair just for gardening.  You will be the coolest person ever.  Everyone will want to be you!

Tell your Granddaughter that I am thinking of her and if she needs anyone to talk to PM me and I'll let my "hot" son know and they can hook up on AIM.  He has been throught the seizure thing after his surgery so he definately can relate.

Over on another post we are having kettle corn and a drink called a painkiller made by our new friend LADavid so feel free to join us over there.

Kisses to you and your Granddaughters foreheads.  :-*  :-* 16
I believe you are given choices in life and it is not what has happened to you that defines who you are.  It is how you handle the situation and finding the positive in an almost hopeless situation that counts the most.  My son is my hero and I have had the pleasure of learning this from him.

ppearl214

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Re: Updates
« Reply #4 on: February 27, 2008, 07:58:09 pm »
*runs in, hands Brenda Gray Goose Martini and popcorn*

Oh, huin... just sending the infamous huggles and healing Beanie "toots". my downstairs neighbor has Lympedema and I never knew what it was until I met her. I am SOOOOOOOO sending you huggles... and wellness wishes for your grandaughter as well.

"this, too, shall pass...."  (my mom always says it to me.....)


Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Kaybo

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Re: Updates
« Reply #5 on: February 27, 2008, 09:46:46 pm »
I garden in no shoes too & I don't understand those silly plastic "gardening shoes" -- I mean I know you can hose them off, but why wear anything?  AND, do you wear something under them?

I LOVE the stocking contest idea!!
Brenda -- You have an incredible attitude - what an inspiration...
K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Kate B

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Re: Updates
« Reply #6 on: February 27, 2008, 10:11:58 pm »
I LOVE the stocking contest idea!!
Brenda -- You have an incredible attitude - what an inspiration...
K
Brenda and Kaybo,

I love the contest idea too!  Let's see...what would my best idea be for stockings.  Hmmm... thinking...

Kate
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

Brendalu

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Re: Updates
« Reply #7 on: February 28, 2008, 06:06:03 am »
Thank you all for my morning giggles.  A stocking contest sounds like good fun and who knows we may make a fortune on them!!!
Thank you all..............................I totally dislike shoes
Hugs,
Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

Jim Scott

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Re: Updates
« Reply #8 on: February 29, 2008, 05:06:26 pm »
Hi, Brendalu:

Just popping in to offer my commiseration on the multitude of medical issues confronting you.  Exactly what kind of youth did you have, anyway?  ;)

Come to think of it, although you have a lot of issues to handle, at least there is nothing that isn't manageable, even if they are a bit disheartening when they seem to come in bunches and alter your lifestyle.   Your attitude is paramount to how you'll deal with these problems and as far as I can see, your attitude is excellent.  Realistic - not pleased (who would be?) - but determined to surmount these problems, and I believe you will. 

Lymphedema is unpleasant and those compression stockings don't sound very comfortable (or fashionable) but at least the condition is manageable.  The PT sounds predictably awful.  I hated doing my exercises right after my AN surgery.  However, they motivated me to regain my equilibrium as quickly as I could. 

Well, at least your granddaughter doesn't have anything life-threatening and can be treated - successfully, I hope. Thank God for that.  Enjoy your martini and popcorn....you've certainly earned them. 

I trust you'll continue to update the folks here as we support and pray for you, Brenda.  Stay strong and stay connected.

Jim


4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

nancyann

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Re: Updates
« Reply #9 on: February 29, 2008, 05:42:21 pm »
I hear ya Brenda;  I've been wondering if my wild child life has caught up with me too!!   I had such a colorful life that at this point (age 52)
I feel like all these aches & pains & illnesses are par for the course. 
Well, we DID have fun, right?

I guess that's why I don't care if I'm in a relationship or not ( had enough of that), go out on weekends, etc.    I'm enjoying the peacefulness
of my life ....

As long as we can still walk, enjoy our hobbies, get online here,  we're doing okay in my book

Take care Brenda,  always good thoughts,   Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

Kaybo

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Re: Updates
« Reply #10 on: February 29, 2008, 08:06:16 pm »
Brenda & Nancy~
OK...I have to say that I was NOT a Wild Child or any of that...so what did I do to deserve this?  I still lead a realitively calm life, but I do a lot more stuff now than I ever dreamed of doing in my youth -- I was the epitomy of the good, little Church of Christ girl!!!
K    ::)
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

nancyann

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Re: Updates
« Reply #11 on: February 29, 2008, 08:16:52 pm »
My problem was going to Catholic grammer school, all girl catholic high school & college - BIG MISTAKE on my parents part ....lol...
+ growing up in the late 60's & 70's - did ALOT of experimenting......

I defy Billy Joel's song   "...you Catholic girls start much too late..."

Thank you K, for letting me know it's NOT payback from God !
« Last Edit: February 29, 2008, 08:26:28 pm by nancyann »
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

sgerrard

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Re: Updates
« Reply #12 on: March 01, 2008, 12:52:45 am »
You learn the darnedest things on  this forum. I had no idea that anyone did gardening barefoot; don't you get jabbed all the time? I wear gloves and still manage to get my hands nicked. Give me my old gym shoes any day...

And who knew that Nancy was a catholic school girl gone bad? I would never have guessed; how thrilling to know! I agree, though, if we can still walk, eat, and get online, we are doing fine.

Brenda, I think you have to go for a Pippi Longstocking look, with the red and white striped stockings. It will be charming, especially with a martini in your hand. Sorry to hear about it all, thank goodness you have such a good attitude about the whole thing.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Kaybo

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Re: Updates
« Reply #13 on: March 01, 2008, 08:29:55 am »
Steve~
I will say that when I am doing the intial "cleaning out" each Spring (I leave all of the dead gross stuff to help protect as much as I can that "might" come back after the winter -- I have pretty good results), I wear my shoes because that is a dirty, nasty PRICKY job.  I don't have any roses, but all the stalks are tough!  After that, though, no shoes!  I LOVE the feeling of soil between my piggies!!!  When I garden for friends and neighbors, they always want to pay me and I tell them they can just get me a pedicure &/or manicure gift certificate (I don't so gloves either!)!

Sue~  My girlies have leopard and zebra too!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Brendalu

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Re: Updates
« Reply #14 on: March 02, 2008, 07:06:23 am »
The wearing shoes part is hitting me the hardest......I barely wore them when we had three feet of snow in the winter in NYS!  I don't like the confines!  Gloves make me feel the same way and I really don't know how much protection you really get from all of that.
I wasn't a wild child..................I waited until my 20's, 30's 40's and I would still be going strong if this AN hadn't sidelined me in my 50's!!
I didn't go to Catholic school...................
Hugs to all......
Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT