Monday, July 10, 2006

I Want To Tell You A Great Story About A Mom I Know.......

There are amazing feats folks accomplish when they draw themselves out of a very sad and lonely period of their lives......

This is the story of my friend Joette.

When your child is sick it is a very difficult climb up the ladder of life. Yet parents of children with physical limitations and disabilities or diseases often say they would never change anything in their world, but if they could change it, they would just want their kid to be well enough to not have to work so hard to normalize their life.

Every day families deal with these challenges and they become stronger people and end up with a fantastic attitude about life. Joette and her daughter Jocelyn were no exception. I didn’t know them as well as I knew other people, but their story of life is similar to others’ I know. Jocelyn was stricken with Cystic Fibrosis.

I know that Joette and her daughter were very close all through Jocey’s life. They worked very hard to normalize their very disease- managing world.

Even though Jocelyn was very modest about her hard work, and talent, her Mother has told me that she was a very accomplished actress and public speaker. Just like any other girl with talents she dreamed big dreams and worked hard toward her goals. Her highlight claim-to-fame was when she spent time with Rick Mercer discussing a show they would do together, when she got better.

Kids who have CF know that their lives won’t be as long as most. They learn a regimen of respiratory therapy that must be repeated several times a day. They have to understand nutrition and about bacteria and viruses that can plague them. They have to take medications to aid breathing and digestion. And they cannot let up even once on their daily disease management routine. Their life depends on it.

It isn’t like piano lessons; where if you don’t practice you won’t get to go on to the next piece; and that is all the consequence to it. Having CF and not working to manage it means you will die. To the families that live with CF there is an understanding you will not have your child for as long as other people get to have their’s, so two things become forefront. Extend your child’s life as long as you can, and cram in as much of life possible into the short years you have together.

Every day a mother awakes and her child is still with her is an amazing day. Joette and Jocelyn were great friends as well as Mother and Daughter. Jocelyn loved life. She was perky and positive and intelligent and flexible. Joette loved being around her Jocey.

My friend Merv wrote recently,"Around the time of my lung transplant in 2002 I met Jocelyn, a young woman recovering from a double lung transplant due to Cystic Fibrosis. She was full of joy with her ‘new life’ and quickly endeared herself to just about everyone she came in contact with at the hospital, including patients and staff.”

I first met Jocelyn in around May of 2004. Wendy and I were at the Wednesday Group session at Toronto General hospital for the Heart and Lung transplant unit.

click here to see what part the London, Ontario Hospital is playing in Transplant research

click here for more discoveries recorded from 40 years of research at Toronto General Hospital

“The Wednesday Group”, as it is affectionately known by….. is a group discussion therapy. Pre Transplant patients and Recent Recovering Post Transplant patients are invited to this session along with their families and Support People. Different things happen at ‘Group'. Sometimes one of the Transplant Doctors will do a seminar on the surgical procedures. A Respiratory Technician or Physiotherapist may come in and talk about their department’s role in Pre and Post Surgical patient’s recovery. Most of all though, it is a place for the “Newbies” on the transplant list to get to talk to more seasoned patients. To learn what to expect from this life or death experience.

click here to read the journals of a liver transplant patient so you can really feel the emotional strength

When Wendy and I met Jocelyn and her Mom we had been coming to 'Group' for several months. We were not “Newbies” by any means at that point. Yet Wendy’s health was deteriorating at a fast rate and we really needed to hear stories from other folk who had been worse off and got their Transplants on time, and were recovering well. That encouragement to keep a positive attitude helps amazingly when all the changes in your health are negative.

We were sitting at the end of a row of chairs in the middle area of group. We had ourselves all settled in and group introductions started up. The typical “I am so-and-so, and my story is……” Along our row about five chairs away sat a young woman and her Mom. The young woman said, “Hi my name is Jocey and I have CF. A couple of years ago I had a double lung transplant, and it changed my life forever. Now I am having problems, but the doctors say I am a good candidate for another transplant, so this is my second time on the list.”

Joette piped up right after with, “And I am her Mom and I am overprotective.”

Everyone in that crowded room began to roar with laughter. So typical was Joette’s answer. Every Family and Support Member felt the same way, and every patient was smothered with love to-death. No Pity in this room. You are allowed to tell a sad story, and you are allowed to get mad and upset and frustrated, but there is no pity here. These folks are fighting against death every day. Pitty is a waste of precious time.
It is very rare that a patient will feel sorry for themselves by the time they are on a waiting list. They are grateful that their body was fighting well enough for them to become candidates for transplant, to begin with. They are also glad for a group of Buddies that share the same rough moments and crises. Real peers that share the same fears and hopes.

Even though the Pre Surgical wait requires a lot of energy and input from patients, families and support people, and the physio and testing schedules are grueling…. The patients all look forward to the three days a week of hard work, long days, including “Group Wednesday”. When you are at Physio and Group, and one of your Buddies are missing that means they are probably in ICU recovering from their transplant.

Often “Wednesday Group” is the highlight of the week in one filled with suffering and routine. All the patients looked forward to the group so they could learn who has been blessed that week and was now in ICU recovering from their transplant surgery. With the laws on privacy, the Doctors cannot freely give information out to the patients, even if it would encourage one’s hope. So the families of the patients make special trips into Group to purposely tell the patients all the details they have to tell about their friend in ICU. The first day that patient is well enough to trek down to the floor that the meeting is on, and take part in “Group” again is filled to the brim with joy. Revitalizing each patient and increasing the positive outlook even more.

click here for more information on the Multi-Organ Transplant Program At Toronto General Hospital

Most every Wednesday is a good day. We learn of foundations of philanthropy that are developed to generate charitable funds for research, and we are educated on the most recent developments in Transplant research and technology. We are made aware of the ever-changing statistics on Transplant Longevity. We find out about the planning of the next Transplant Games, or Picnic, or Bake Sale, or Holiday Dinner; and volunteers are solicited to do crafts, bake, or just come out for fun.

Philanthropy associations across Canada, Donating Along the Path to success

Once in a while Wednesday group is a rough day. For Patient Memorials are often held at Wednesday Group.

On August 23, 2004 Jocelyn succumbed to her disease. On September 1, 2004 the memorial service was held at the hospital. The room was filled…. So many patients knew Jocey, and so many looked to her and her Mom for support because they had already been through the process, and for two years had a success to be celebrated. They came to share the celebration of Jocey’s Life with her family.

The last years of Jocelyn’s life pulled at Joette’s foundation. She was a hard working woman with her own personal challenges, and she and Jocey filled their world to the brim. Experience all you can, is what folks have to do when they get the chances like this. Now Jocelyn was dead Joette and her husband had to rest and mourn.

Joette turned to her creative mind to help her build a world she could live in comfortably. She lost her child. She was a businesswoman and suddenly that was not where she wanted to be. There seemed no point to working that hard to accomplish no joy and substance to one’s life, unlike what she was able to build with her daughter.

Joette dreamed of becoming a jewelry designer. All these ideas spun around in her head. Within the 18 months since the death of their child, she and her husband decided to take a leap of faith, and trust that Joette could make her Art work. Joette’s own quote, “It’s not jewelry, it’s ART! Let me create something for you……”

Now Joette is making beautiful jewelry pieces using gemstones and Swarovski Crystals.

Her pieces are amazing! She has her own Ebay store.

Feel like a superstar, have a look at her Online shop, and snatch a piece for yourself to wear “On The Red Carpet!

And know this……. Each of these pieces is a totem created from the love of a child. Every piece a testament to the life of One Mother, and One Girl.

Can you imagine how special these pieces will be in the future? I can imagine an anthropologist doing a paper on the Kruger pieces. Telling the Story of the Designer Joette and her love for her daughter Jocelyn, and how she was inspired by her daughter’s beauty and zest for life, to create beautiful whimsical jewelry.

Click this link to read Joette’s Own Story

Click this link to see Joette’s pieces on her Ebay Store.

I am so proud of the transformation of my friend. “Hi I am Lynn Tucker and this is my Friend Joette, she is amazing.”

I know Joette would love to read your comments. She will see them all!

Give the gift of life. Sign your organ Donor Card today. Get your card here.



charles ravndal said...

hello there. I am excited to hear the story.

RennyBA said...

Hi Lynn - looking forward to the story:-)
Btw: I did like you told me and have a Friend Map acount no. Thanks for accepting me as your freind and I can tell I am the first one you have i Norway - cool!

Jules said...

Lynn, I'm so glad to have come across you at Blog Dog's place and to this post in particular. Thank you so much for sharing this story. I'm considering donating a kidney to a good friend - he's going through all the tests to see if he's even healthy enough to receive a donation. All these links are a great resource and will continue to be.

And by the way - reading your post on Alex's birthday- what a cool mom!

Lynn said...

Hi Jules,

I am glad that I could help. If you need to ask any personal questions feel free to email me.
My email is in the margin

Johann said...

Thanks for the info on donors. Sadly, I cannot be a donor because my blood is tainted, but I did belong to a group that called itself the tuesday night group. we got together and studied psychic stuff. In the end, it was more of a therapy group. We even became a support group when one of our members got breast cancer.

Lynn said...

Thanks for commenting Blog dog,

I don't know about the United States, but in Canada folks who are not good candidates because they are taking medications, or have a disease, tainting their blood, can still play an active role.

This is also information I too needed to know. I have very rare blood, and I was disappointed when I ended up on a medication that taints my blood. So blood services could no longer use my blood the way they used to.

What I found out is that even though I have tainted blood, as long as I am well enough to do so, I can donate blood now, and donate my organs when I pass away.

The difference is that my blood and organs will be used for research purposes only.
I found out that my whole body, eventhough I am riddled with auto-immune disease is still donatable. My body will be donated to science so my diseases can be researched.

The medical community will use my organs and body and blood to research disease, and to test effects of medications on certain tissues.

I just have to tell the blood services and the University health system what is wrong with me. Then they flag my samples.

I feel pretty good about that. I am glad my parts aren't useless cuz I am sick.

Anonymous said...

Hi there,

This is Joette, Jocey's mom. Jocey became a donor after she left us. She wanted to be a donor very badly because she had been given the gift of life so they used her organs for research, but her eyes and other tissues were used for transplant, as well as many of her bones. There is a lot of the human body they now use for transplant besides the organs so everyone can donate. It's incredible what modern medicine is capable of.
Thank you to Lynn for this eloquent writing of Jocelyn and my story. You are a wonderful person Lynn.

Lynn said...

Hi Joette,

I didn't know Jocey was a doner. That is awesome. My friend who was riddled with cancer got to donate her eyes for transplant.

I have donated part of me already. I donated fat and skin.
In 1997 I lost alot of weight and had my flesh removed. My skin and fat were harvested to use as bases to create grafts. I believe they grew more tissue from mine and created a sterile graft for burn patients. Cool Huh!

I know the EEEEWW factor is high on this one, but none the less I felt very useful.

zingtrial said...

lynn,I am glad I found you :) .I like reading through,tell us the story,OK!
Wish you all the best.
Thanks for the tip on another blogg for cooking He!He!He!

Mother of Invention said...

A beautiful story, Lynn. Everyone has a purpose in life beyond just living it. Several, perhaps.

I have had diabetes for 38 years, and have Fibromyalgia/Chronic Fatigue, a heart attack (Stent put in 1 artery in March at Southlake! Wonderful place!), and have tested pos. for ANA..(not sure what that means yet)as well as some recent liver problems this past year.

I never take health for granted as many people can afford to do...I think about it every minute and try to see my condition with perspective.

We all give each other this when we share our stories.

What a great tribute this gal paid to her daughter's life by creating some beautiful pieces of jewelry!

Lynn said...

Hey Mother of Invention,

I knew you lived close! I could just feel it.
I can clear up your fog on ANA testing.
ANA is a specific antegin test. If you test positive you can have one of many inflamatory diseases, from arthritis to lupus.
I am also ANA specific. I have Sjogrens.
All this means not so much on its own cuz you could have tiny bit of a dozen inflamatory disorders and never solidly test for any of them. This is call C.R.E.S.T. Identified.
It is no surprise that a person who has Type 1 diabetes is ANA positive. For diabetes in itself is considered and auto immune disease now. Gone are the days that Drs will tell a person their lifestyle caused the diabetes.

The idea that a person is auto immune sufficient and thus problems like diabetes start early in life is more the idea now.

Unfortunately long term diabetes can cause serious hardening of the arteries of the kidneys, liver and heart.(in that order usually).

If you haven't guessed by now I am also diabetic. I am very lucky mine started only in 2003 and was caught very quickly to the onset. I was being watched for years because I had a hyperinsulinia tendency (too much insulin so blood sugar was always very low for all my life)

But my chronic illness I suffer from has an auto-immune tag to it for sure.

I too take nothing for granted. In my weird auto-immune life I have touched death 4 times, almost all when I was in my twenties with small children.

I know now that everyone'e life hangs on a thread.

I try my best to experience as much as possible. My very broad work history, and travel history and lifestyle history are a testiment to that. I am very proud of my life. I have accomplished everything I have dreamed to do. So I create new dreams every day. Every day is a pretty awesome day to me.

I write about folks I know, cuz I know some pretty awesome people. I am trying to see the world through their eyes as well as my own.

chumly said...

Been a donor for years. This is one of the reasons why.

Mother of Invention said...

Thanks, Lynn for sharing all that!
My life has been a lot more narrow but I have been contending with more limitations for longer. Am struggling right now with whether to return to teaching, even a few mornings a week! It will depend on liver health and how I can maintain cardio workouts. They make me tired and sore and I don't think I'll get to the point where I can do 30 - 60 min. daily!
I was just in Newmarket today to get my eyes checked and they seem to be okay! YAHOO!

Your pics are awesome and make my little rose pics on Sat. post look lame! HA!
Take care! What kind of insulin are you on? Or are you? I'm on Lantus and Novo-Rapide.

Lynn said...

Dear Mother,

I like all the pictures folks take and put on their sites. I know that is not always easy for me to remember all the steps to edit and resize pics and download and upload pics, so I appreciate that people have taken the time to try. I don't do any of my stuff on my own. I am fortunate to get tutorials from my sons all the time.
I love learning from them. They are very patient with me eventhough I get frustrated easily with new tasks.

I am fortunate I am not on insulin. I was completely regulated by diet and exercise until I got this current medical problem that stressed out my whole body system. So now I am on Avandia. It has a multipurpose component. It is a cell wall reducer, thus reducing the amount of meds I require for the arthritis symptoms, and helps if I need the odd pain meds for the headaches I get from my dumb brain injury. Uhh I wrote about the effects of the brain injury in the past post you can find in the margin under the DEDICATIONS SECTION. Post is called "Time To Learn About The People Behind My Links."

Mother of Invention said...

Hi Lynn,

Interesting read! You are multi-faceted to be sure!

You do quite well despite your limitations. It is so easy to "Limit" yourself when you deal with a myriad of health issues. I get pretty overwhelmed with mine at times.

Am struggling now as to whether to go back to teach in the fall, even for 2 mornings a week. Will depend on how my fibromyalgia/chronic fatigue, cardio health, liver enzymes (alk phos has been elevated for a year and they don't know why)and my diabetes, which hasn't been too bad, actually.

My grandpa was a Mason and had a full Masonic Funeral service, and my mom was an Eastern Star member...I have her ring.

Good health to you.

Lynn said...

Dear Mother,

If you are on any medication for pain you may want to look at the Tylenol component of your meds. NSAIDS are asperin, and can mess with other meds, and can do the same in the liver, but the tylenol is worse. Seems that when the body is fighting itself it can increase the sed rate on its own. Add tylenol as the tag to pain meds and it is really hard on the liver. Most change to using an anti seisure med for the fibro myalgia. Topiramate or Gabapenton. At times I used tylenol 2 for bad bad pain, then I started to get adema in my feet. Switched to Tramacet cuz it has a lesser tylenol component. It did the same. Once the body is not happy with a liver toxifying. It wont let up. I would talk to your Dr about using a Neuro blocker like Nortriptyline with a muscle relaxer like Zanaflex as a coctail. At night only. Half the battle with chronic fatique is getting the healing sleep to prolong. Anti seizure meds help the neuro frigg up the fibromyalgia causes. These meds recycle through the liver and change their properties. When they change their properties they become better and stronger long term yet dont mess with the liver. Stay away from chordico steroids like Prednezone. It will kill the liver and make it produce huge amounts of sugar, and it will cause certain types of body tissue to deteriorate when you have the complications you have.

Work is an issue only you can answer.
The Chronic component to your problems could be a stress that your body can't take any longer, but your mind doesn't know it is a stress.

Part of the situation you need to get a handle on is good sleep. Then you need to be able to wake up slower to battle the strange stress you dont know about. After a month of that you will know if you can work. As long as you are questioning it and are trying to negotiate with yourself about what you may be able to handle it, you are not ready. If you are ready you will be chompin at the bit to get doin it.

If you have heart problems you may want to take the Chronic Fatigue as a messege from your body to stop rest and heal for a time.

The liver is an organ that can heal itself, but you cant fight it. You have to be well rested to allow the liver to heal.

If you are close to Newmarket we can start a walking for energy program if you like.

Mother of Invention said...

Thanks, Lynn, for all your tips! I have a lot to check out with my various doctors! I've had Fibro/CFS since '89 and was able to teach 1/2 time since then until last Jan.

Yes, I need to ponder a bit more before I make a decision to go back. I miss the kids and other teachers but I can volunteer for a few classes a week.

Actually, I was a really good walker, about 2 1/2 miles a day, quite quickly, for the past couple of years but I developed Charcots Joint, from diabetes, and can no longer use walking as a form of exercise for cardio. I wore a cast for 4 months last summer/fall until I could get proper shoes with rocker soles and orthotic made by a pedorthic guy in Barrie. (I'm in Alliston) It still is enlarged and sore half the time but is no longer in the sub-acute stage.

I just came back from riding a real bike at Base Borden and I did about 10 km in 50 min. but we'll see how my neck, back and leg muscles are tomorrow! I have no disc left in my lowest neck vertebra and lowest back vertebra. My husband is a good chiropractor so he helps me a lot, and he has massage therapists who I go to once a week.

Thanks, again! I'll keep you posted!