ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: CROOKEDSMILE on October 22, 2008, 10:14:16 am
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I woke up this morning thankful that I had this forum to come to when I got out of bed. It is now a morning, afternoon and nighttime ritual for me as I check in with my support group family. Being 37 and a somewhat attractive lady (before surgery).... with two small kids and dealing with the ramifications of facial paralysis caused by surgery has changed my life somewhat.....or should I say ALOT. We all have different ways of coping and I think that it is important for us to share with those going down the same path as us so that maybe we can help someone along the way. Here's a list of things that come to mind that has helped me the last 15 months. I would love to hear from others as I can also use all the help that I can get in continuing to cope with post op complications.
1. ANA Forum
2. Prayer
3. My kids and husband
4. Laughing......good medicine for the soul.
5. Facial Therapy
6. Heat packs to face and neck/massage
7. Playing the piano
8. Working in my garden
9. Reading inspirational books
10. Long walks
11. Quiet time with my family
12. Meditation
13. Last but not least.......Martini's (in moderation of course!)
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I'd agree with all of them! Except the piano thing - no one would be thankful if I played the piano.
I'd add: Good friends, caring doctors, a good sense of humor and lots and lots of eye drops!
Lori
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In no particular order....
Reading
Friends
Kids
Husband
Hot showers
Hydrocodone
This Forum and two others I frequent
Scouts
School Volunteer Program that keeps me out of trouble and my mind working
Satellite TV between 2 and 4 in the morning ... there is always something on and for what ever
reason, watching TV puts me back to sleep about 8 times out of 10 ...
Ability to laugh some things off...
Did I mention hydrocodone?
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This forum, definitely.
My husband and son
My job and colleagues
My friends
My dogs
Music
Various drugs
Running
Perspective
And last but not least, a sense of humor
Marci
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At first this post will seem like it belongs somewhere else but I promise it will fit here when I'm done. While at work today I experienced a "Bad Eye Day", makes me laugh when I think how some people whine about having a "Bad Hair Day". Boy, would they have a rough time dealing with our issues. Anyway, it was one of those days where my eye was dry & or irritated or the ointment was globbing onto my eye lashes and running down my cheek. In otherwords my mind was always on my eye instead of my work. Then a customer asked if I got poked in the eye or if my eye got scratched as it looked like it was watering. As I worked on their invoice I told them my eye doesn't water at all so I use ointment. He asked if my tear duct was plugged and I said it was something like that. Sometimes when I say more the people asking the questions clam up and seem uncomfortable so I keep my asnwers short. Today I decided to take a stab at giving the customer more info. and seeing how it turned out as perhaps it is me that's uncomfortable with the subject. After I paid them I told them that I had surgery for a tumor in 1992 and that lead to my eye not tearing. They asked if I was ok, if the tumor was benign & how I found out about the tumor. I told them I'm fine, and that the tumor was benign & that I lost most of my hearing and went to find out why. They asked if I got my hearing back, I said no, but I got to keep the use of most of my face in trade. They smiled and said see you tomorrow!
After lunch my throat started bothering me and my head felt a bit fuzzy so I feared I was getting a cold or the flu, got a flu shot yesterday but perhaps it was to late. When I got home I decided to take a nap as I still didn't feel to well and I was tired of dealing with the eye. When I got up my husband was home and he said the World Series was about to begin so he would be spending the evening watching that. I had wanted to take the dogs for a walk as it was a beautiful Fall day, which was the other reason I took the nap, hoped I would feel up to it then. Somehow the dogs new I wanted to go for a walk as they kept prancing and dancing all around my husband so he knew they were ready for a walk, he told them NO! That's when I got the energy to head on out. I grabbed my walkman & the dogs and a way we went.
We headed to the neighbors house that always has an excellent Halloween display, it's so good that the dogs growled at some of the creatures in the yard. One of the tomb stones said, Elvis Presley, live with it! Then we headed to were there doing new road construction, no cars allowed so we were free to go anywhere we wanted. The dogs stopped to smell the new fall leaves on the ground as I looked around to see all the beautiful trees decked out in there golden colors. We walked through a new housing development and I couldn't help but notice how all the houses looked pretty much the same, as we approached our home I was able to appreciate that ours was different as I am, and that's ok. My husband usually walks with us but tonight I'm glad he didn't as instead of talking I was busy looking at the trees, paying attention to what the dogs wanted to do and where they wanted to go and most importantly doing what I WANTED to do when I wanted to do it. Enjoying the simple things!
The baseball game was still on when we got home so I decided to check our email, I was surprised to find an email from our youngest son who is in the Army and stationed in Germany. The subject was, Thanks Mom, that made my day right there. Then I read the email that said he had gotten one of the packages I sent him last week. He's headed for Morroco, Africa Monday and I had mailed him 2 boxes of food so that he would have something good to eat while he's there, the food & air and living conditions always make him sick when he's there. He found out just after I mailed the packages that he would be leaving early and we were afraid they wouldn't get there on time so it was really good to hear he already got one of them.
This morning I told myself that I was going to post a "Venting" post when I got home, then my day got a lot better so I decided to make a "Bad Eye Day turns good Day post, then I saw this post and decided I would add to the things that help us cope list.
1. Husband that still kisses me good morning & goodnight even though my kisser doesn't work like it use to
2. Sons that treat Mom like they always have and need her help so she focuses on them and not her problems
3. Boss that gave me my first job 13 years ago, despite my eye & hearing issues
4. Love to garden, will carve 5 to 10 pumpkins this weekend
5. Long walks to the store with my husband and 2 dogs
6. Long walks to the fast food restaurants so I don't have to fix dinner
7. Yes, this forum, where I can share my thoughts and know the reader understands what I'm saying & feeling
8. Throw a pity party now and then
9. Post on the cookie recipe spot, it's nice to have places to share the good things in life
10. Listen to music from the 70's and listen to my Mom & Dad's albums
11. People that are ok with talking about Tumors and the problems that go with them
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In no particular order:
1. Music
2. Exercise -- especially outdoors
3. Meditation
4. My wife and mom
5. A new puppy (or any pet, existing or new)
6. The solitude and beauty of wilderness
7. Rewarding work
8. Helping others
9. Healthy diet
10. Lots of sleep
11. The support of friends
12. This forum
13. The accessibility and caring of "my" medical team at Stanford
14. Always having the next vacation or other special outing planned (always having something to look forward to; when one trip is done, start planning the next one immediately!)
Best wishes,
Tumbleweed
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Keeping really busy helps a lot. My father-in-law passed away two weeks ago and I am helping my mother-in-law deal with many details. (I am a stay-at-home mom am available most often.) I am also trying to relocate my parents to the community I live in from their home of 35 years two hours away. My dad is having a rough time recovering from heart surgery which is complicating matters.
My kids still at home are in seventh and fifth grades, with many activities. They have been so great. My face has never once bothered or embarrassed them. My husband has been great too. He even said I still have a beautiful smile (bless his fibbing heart).
Time is also a key element. At first I was very preoccupied with my paralysis and how it was going to change my life. Nearly five months down the road I realize that life is still going on. Not that I want to look like this forever, but it is what it is.
Sara
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Great thread! I feel like I have so much to be thankful for, not even sure where to start...
Wonderful husband who still tells me I'm beautiful (even with my crazy looking smile)
Loving and supportive parents
Loving and supportive friends
Terrific doctors
The cats and the dog, who love me no matter what I look like
Beautiful, crisp fall days
Eating well
Chocolate (dark, of course!)
Being able to laugh at myself
Being comfortable "in my own skin"
and last but not least....
ALL OF YOU GUYS!!
Debbi
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GREAT topic, Angie! I first saw it yesterday but wanted to post when I had more time to think about it!
1. FAITH
2. Dave
3. my beautiful Curly Girlies
4. Extended family (they are all so wonderful and supportive)
5. Incredible Friends!
6. this forum
7. LAUGHTER
8. flowers!!
9. exercise (really the ability to do anything I want - if I want it bad enough!)
;D ;D ;D ;D ;D ;D
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Oh Forgot to mention my crazy pills.......Lexapro.(antidepressant)
Angie
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I love all your lists. I ditto them.
There are sooooo many things to help us cope and the lists you all made - made me appreciate that. We can lose sight of the blessings and when I read the lists that is the word that comes to mind. I will add 2 things - I love also beautiful sunsets and calm peaceful places. MY GREATEST help is my husband who is not only a ROCK but patient and loving. He reminds me "we are going through this together", so I never feel alone.
Mary 8)
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I've just rejoined the forum after experiencing the death of my brother on Oct 16h, whom I was very close to.....what got me through this year with his illness and my dx was
1. my husband
2. my children
3. my family
4. my faith
5. my friends
6. my job
7. and this forum
thanks
all
LisaP
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Humor ;D
Friends, family, colleagues, fellow forumites :)
My docs - two exceptional men 8)
Faith
Hope
Trust
Music
The prospect of meeting other ANers @ the symposium
The hope that someday Steve WILL knit me that green hat ;)
Jan
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Jan~
I hope that the "hope of Steve knitting you a hat" gives you many YEARS of comfort!!!!!!! ;D
K
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Funny, Kaybo, funny :D
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just helping you to be realistic...
K
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Jan~
I hope that the "hope of Steve knitting you a hat" gives you many YEARS of comfort!!!!!!! ;D
K
That can be arranged. ;D
Steve
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Promises, promises, Steve.
The weather is changing here in Chicago; my BAHA is getting cold ;) :D
Sorry for the hijack, Phyl ::)
Jan
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My kids, who always make me laugh and feel loved\
My husband, who can be unreadable but will always be here in the end
My family - brothers, sisters, nephews, nieces
My AN family, whom I could not get through this without
My friends
My cat, Oscar, who gives me unconditional love and doesn't care if I don't hear him as long as I feed him and give him attention
Dr. Choe - an exceptional doctor and remarkable person
Dr. Chen - Clearly, also a wonderful doctor
Knowing this experience has made to stronger
Feeling the AN journey has made me a better person
Wendy
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cheri
that was well said. My sister in-law and brother-in-law have an autisic son after reading your paig i can understand why she is feeling the way she is...
I think she still dreams of Italy and can't move past that... her son is now 11 years old and i think he is doing great.
he didn't even speak at age 5. now you can't shut him up. he is very intellagent, very likable, and very handsome...
i try to keep reminding her of all the positive but she still sometimes thinks of all the things he can't do. not having a big wedding or having grandchildren seems to be the hardest.
if you do not mind can i print out your paige on raising a child with disabilities and show it to her... I think it would be very insperational.....
Konnie
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That's a wonderful bit of wisdom from Erma Bombeck. A good friend of mine just found out that the darling baby girl they brought home from Russia two months ago has cerebral palsy - I am going to share this with her. She is already making many new plans for her precious daughter, only now they include things like equine therapy and perhaps leg braces. She is still, however, a beautiful and amazing little gift. It's just in how you look at it, isn't it?
Debbi, pondering the many meanings of life...
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cheri
where have i've been Erma Bombeck i remember my mother reading her news colums , she gave my mother some comic relief raising 4 smalll children at home..
she was a wonderful lady. and gave great advise....
thank you for the reminder...
konnie
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I just saw this thread and love the idea of the focus on the positive. My glass is nearly always half-full, so I can usually find something that makes me happy.
In no particular order,
dark chocolate, preferably taken with red wine :D
afternoon naps
a crisp, juicy apple
old moves, esp. with Cary Grant
good friends
a good book-maybe an English murder mystery
brisk fall weather
my family and times we are all together
Friday evenings and Sat. mornings
a purring cat on my lap
comfort food, like hot soups and stews
friends you can commiserate with...like on this forum!
Maggie
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(http://i335.photobucket.com/albums/m459/spaspoiled/DSCN1239.jpg)
RIVERS CADE AND TANNER EVANS......MY TWO SONS.
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RIVERS CADE AND TANNER EVANS......MY TWO SONS.
Yup, that works. An inspiring pic.
Steve
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The things that helped me through would be
My husband
My son
Family
Alot of prayer, yes alot of prayer.
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So much to be thankful for this year, in spite of trials.
My relationship with Jesus
My husband
My three kids who want my face back, but love me just the same
My work that helps me to give back
chocolate chips - Trader Joe's milk chocolate :)
coffee
Good support system of Dr.'s
PBS shows that are relaxing...Rick Steves, English mysteries
Monster slippers
Great friends
Ebay
A trip to Disneyland this week!
A forum where other's understand!
Blessings to you all on this day of Thanksgiving.
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I too am having a bad day, thank you all for you insights, it really helps.
Tam
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This surely has been an uplifting of my spirits........to read all of these wonderful thoughts. I am a widow,68 years young, 4 years out from CK (Stanford/Dr. John Adler) and experiencing the same issues. "meltdown" goes with the territory I think. I am surrounded by a loving family and super friends and this incredible site. My issues/remedies are much the same as those mentioned here. Extreme balance issues,headaches, vision, loss of hearing,sinus like symptoms,numbness on left side of face/slight drooping and such. Balance/headches/tinnitis are my greatest hurdles. I was very fit and worked out 6 days a week before all of this.........Very active. All that has changed now but I have managed to insert other things to fill the gap. My grandchildren are my joy....after raising 3 boys...I now have 4 beautiful grandaughters.16...13....11...10 and a very handsome/loving granson 14. They love to cook(with Nanny's help) hear me play the piano....come to their various activities...11 year old is an accomplished equestrian(drassage) far beyond her years..16 Jamie loves to practice driving skills in the pasture as I look on.....they all have their special talents and I am soooooooo blessed and happy to have them so close to me, I write, paint, make topiaries (I can sit!) read....I bought a KINDLE on amazon and I can increase the font size for easy reading....meditaion/prayer....yoga (fabulous relaxer) treat myself to manicures,pedicures,waxing (those terrible lip and chin hairs)eyebrows.....makes me really feel good about me and I took a leap of faith and am having a new home built in a gated community....with a social director that is fabulous. My sons are refurbishing a golfcart so I can be very mobile in my new digs. I try hard to be upbeat but do have those times when it overcomes me....it's sort of like the grieving process...a loss....never to return. When my husband of 38 years died in 1995....having never lived on my own I had to re-invent myself....it has been a journey of discovery.....this remiinds me I CAN do it and I will do it.....even through the "meltdown" times.....my faith and hope bring me through the rough waters as do people on this site. Thank you all for the honest sharing and support. Keep it up.....we all need each other. Judy in California
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On the days that are bad and my thoughts start to drift to why me I remember a day shortly after I was diagnosed when I was particularly depressed. I was sitting in the waiting room at the hospital getting ready to have the BB's implanted in my skull that are used for the targeting scans to direct the proton beam during surgery. A young boy perhaps 9 years old was wheeled into the room...obviously in a fight with childhood cancer...no eyebrows or hair....thin as a rail. We struck up a conversation. He sensed that I was feeling pretty down I guess because he started to try and cheer me up. Here I was in my mid 40's having lived a great life feeling sorry for myself while a 9 year old with a potentially terminal illness tried to console me. I vowed from that point on never to say "Why me?" The thought still occurs to me but I never dwell on it.
Since then I've built on that. I realize how lucky I am. I used to think how great it would be to win the lottery...I didn't realize I already had. I was born into the most prosperous nation the world has ever seen. A place where personal freedom is guaranteed. I live amongst a small percentage of people that relative to the majority of the people on the planet today are fabulously wealthy (I'm just a middle class hard working guy) and if you consider all the people that have lived before us it's astounding how we live. Kings of old could only dream of the riches we take for granted (Cars, TV, Music, Travel, Art, Ben &Jerry's....the list is endless). I had wonderful loving parents. A great family growing up. Some of the best friends a person could ask for. I found my soul mate at 17 and married her when we were 23. Together we've raised two extraordinary daughters that have brought us so much happiness. I've resurrected my love for the ocean BECAUSE of my AN. My new found passion for surfing leaves me feeling alive like nothing I've ever done before....Life is Good!
I've come to believe that without contrasts we can't truly appreciate life. Would you know what white is without black? or pleasure without pain?
Things that make me smile.
My wife
My daughters
My family
My friends
A warm day with glassy waves
Being on the water in a wild nor'easter
Any day on the water actually
A beautiful sunset
Woodworking
Landscaping
My dog
So many other things too....
When life hands you lemons...make lemonade!
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Stoneaxe:
Thanks for your inspiring words of wisdom. Good stuff to remember.
Best wishes,
Tumbleweed
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I saw a news braodcast today about a local Navy Seal that was wounded seriously in combat in Iraq, he took rounds from a machine-gun to his face and arm in Iraq last year.
His story is one of motivation and honor. His face is disfigured, and his right arm is mutated from his wounds. He posted a bright orange sign on his hospital door after a visitor was visably shocked by his appearance and had to leave suddenly. His words were read by Secretary of Defense Robert Gates at a recent news conference. This Navy Seals's sign is going to be framed and hung for all wounded vetrans to see to help motivate them toward recovery.
"Attention to all who enter here. If you are coming into this room with sorrow or to feel sorry for my wounds, go elsewhere. The wounds I received I got in a job I love, doing it for people I love, supporting the freedom of a country I deeply love. I am incredibly tough and will make a full recovery. What is full? That is the absolute utmost physically my body has the ability to recover. Then I will push that about 20 percent further through sheer mental tenacity. This room you are about to enter is a room of fun, optimism, and intense rapid regrowth. If you are not prepared for that, go elsewhere."
Wow...what courage and motivation. I hope that these words help someone tonight that is looking for such motivation.
http://www.defenselink.mil/speeches/speech.aspx?speechid=1300