My mom and I have been living with debilitating illness for many, many years. Two and a half years ago, she was diagnosed with Lung Cancer. This is a short video of my mom expressing her incredible attitude and perseverance after an appointment with a new neurologist last week!
You are amazing, Mom!! Happy Mother’s Day! I love you!
Many of you may not realize, I have been living deep in the depths of despair off and on for the past year. After losing my brother, I clawed to keep keep my head above the ground.
In December, the most amazing thing happened to me. I found Peppermint Patty. Bringing her home was the happiest day of my life!
But she was very unhappy here and though we tried desperately for months to resolve the situation, I lost her. Because I was already dealing with the loss of my brother and had no idea this was going to happen, along with my mom battling lung cancer, my sister breast cancer, my own daily struggles and several other things, I was thrown into a pit. She is a part of my soul. I love her beyond words.
I share these things for 3 reasons:
1) Not to ask for pity, but to be honest about what I am going through and ask for prayer.
2) To voice my frustration with the reality of isolation due to my illness and chemical injury. I am unable to attend church or go to many (if any) functions and miss out on holidays. The hardest part is not having that fellowship time with friend and family.
3) To encourage change! It doesn’t have to be this way! We have steps that are simple for most to make it possible for me to be a part of the lives of others. Don’t give up on me. Don’t give up on anyone living with illness and chemical injury.
A lot of people have told me to stay strong. With the grace of God, I have been a very strong person and have been through much more than people know. I will get there.
A special Thank You to Kelley Harding for taking such great care of Peppermint Patty and making her a very happy baby.
Lyrics “My Heart is Broken” by Evanescence:
I will wander until the end of time
Torn away from you
I pulled away to face the pain
I close my eyes and drift away
Over the field
That I will never find a way
to hear my soul
And I will wander until the end of time
Torn away from you
My heart is broken
Sweet dreams my dark angel
Deliver us from sorrow’s hold
From my heart, heart
I can’t go on living this way
I can’t go back the way I came, change of this field
That I will never find the way
to hear my soul
And I will wander until the end of the time
Half alive without you
My heart is broken
Sweet dreams my dark angel
Deliver us
Change
Open your eyes to the light
I’ve been denying so long
Oh so long
Say goodbye, goodbye
My heart is broken
Release me, I can’t hold on
Deliver us
My heart is broken
Sweet dreams my dark angel
Deliver us
My heart is broken
Sweet dreams my dark angel
Deliver us from sorrow’s hold
Something happened yesterday that I have dreamed of for a very, very, VERY long time. Something that I hoped for, for so long that I had accepted would probably never happen.
But after an extremely hard year of losing my brother, my mom battling lung cancer and my sister battling breast cancer, the time had come.
Little did we know it was well worth the wait, because someone else was praying too.
I had horses until 24 years ago. Always wanted another one! We moved to this house to get one, with the hopes of me getting well. It is a big commitment and responsibility to take on when I can’t even keep up with my own needs. But life was passing me by, so Wayne and I decided to take the plunge!
Peppermint Patty is my Therapy Horse. She provides emotional support, confidence and determination, as well as balance and strength when I walk with her.
UPDATE March 17: We are devastated. Patty wasn’t getting along with our goats nor our dog. She began seriously acting out, because she was lonely and wanted to get to them. We tried for 2 months with the help of Mini Horse experts and trainers to make it work. My heart has been ripped from my chest. I love her more than words can say.
MORE VIDEOS OF PEPPERMINT PATTY!
Living with Environmental Illness is a challenge that often brings about isolation from public, friends and family.
Many loved ones feel overwhelmed by the endeavor of going fragrance free. They don’t know where to start, where to buy products and often fear making someone ill by missing something. Thus, they often avoid the issue and in turn avoid the person living with chemical intolerance.
As I tell everyone I come in contact with, using fragrance free and natural products is health choice for everyone. In other words, it can be viewed as a positive change for all, rather than a sacrifice just for someone who has an issue.
For those who for whatever reason don’t want to change out all their soap, shampoo, deodorant, lotion and hair products, one suggestion I have for people is to keep a Fragrance Free Kit.
Of course, if they want their loved one to visit their home, it will probably need to not have any air fresheners, new carpet, paint, lots of candles, carpet shampoo, stains, harsh cleaners, smokers, regular perfume wearers, etc. On the other hand, if these are not an issues, often there can be some compromise.
First, if the loved one cannot tolerate fragranced laundry products, those will need to be changed long term. These do not wash out easily and linger for many months or longer even when washed multiple times.
Second, we can purchase fragrance free shampoo, soap and deodorant. We keep this under our cabinet and pull them out to use for several showers before visiting with our loved one. We can omit other hair products, lotions, sprays, etc or add fragrance free versions to our kit.
For more information on living with Environmental Illness, the Choose Friendships Over Fragrances Campaign, resources and more: Cleaner Indoor Air Campaign
Do you or a loved one live with debilitating illness or pain? Invisible Disabilities Association
Disclaimer: I am not an expert and this may or may not work for you and your loved one. Please ask your friend or family member what they can or cannot tolerate and what will work for them. Also note that most likely alternatives will not work if there are air fresheners, new carpets, paint, stains, carpet shampoo’s etc. in the home.
I am so thankful for my family who made it possible for me to spend the weekend in their home for Thanksgiving. The weekend was filled with being surrounded by my amazing nephews and I was loving it!!
I enjoyed every moment of the kids running around, playing, wrestling and most of all for their giving and caring hearts! It was incredible to be there with my sister, brother in law, their kids and Wayne’s mom (Karen). I have not been there for a long time, because they had some remodeling done and it took a while for all the new paints and carpets to out-gas.
What’s more, they came and stayed at our house for two days after Christmas. And, we were able to spend Christmas Eve Day with Wayne’s dad, mom (Eloise) and more family. Yay!
something that does need to be changed ahead of time) then using FF shampoo, soap and deodorant before we spent time together.
On 12-12-12, HuffPost LIVE produced by The Huffington Post a video interview and article with Wayne Connell, the founder and president of the Invisible Disabilities Association (my hubby) and me.
The show was titled, “A Tick Bite Changed My Life Forever” and was hosted by Nancy Redd.
Holy Toledo! How cool is that! As of today, it has 117,771 views! Although I mention Lyme, the interview is really about ALL living with debilitating illness and pain, no matter what their diagnosis. Most of all, it is about helping friends and family better understand.
The Huffington Post wrote:
Sherri Connell, who suffers from Multiple Sclerosis & Lyme Disease, and her husband Wayne Connell, the Founder & President of Invisible Disabilities Association, joined HuffPost Live to tell Nancy Redd Sherri’s story of contracting her illnesses through a tick bite and how they have turned it into a positive thing by founding an organization to help those with disabilities.
“When I was fourteen I was bit by a tick but at the time I didn’t know it,” Connell told Redd. “But, I started feeling chronic pain soon after.”
“I fell in love with her and we got married in ’94. And in ’96 she coined the phrase, “Invisible disabilities,” said her husband Connell.
The show was produced by the Huffington Post with excerpts from the HuffPost Live episode from December 11, 2012 entitled, “Not Handicapped Enough.” Interviewed for this segment was Wayne, Karyn Buxman, RN, MSN and Elsa Sjunneson-Henry and was hosted by Nancy Redd. Read full story!
Watch the 3 minute show, “A Tick Bite Changed My Life Forever” below! Share it with friends, family and groups to increase awareness and send a message to the media that these are the kinds of articles people want to hear and read about!
RESOURCES
Ask anyone living with illness or pain and they will probably be eager to share what many people have said to them over the years that they didn’t feel was very encouraging. In fact, many will tell you that they were very hurt by something someone said.
It is true, that some people in this world may say something that is intentionally judgmental or negative. Nonetheless, we believe that in many cases, friends and family really do want to be supportive, but simply don’t know how.
Some people choose to ignore the issue or person; some toss out platitudes like simple fix-its and others share what they feel is the right thing to say with an expectation that it will be met with appreciation for their insight. However, loved ones often they find themselves perplexed or even angry when instead of being elated by the comment, their friend or family member is clearly frustrated by what was said. Sadly, these encounters can lead to the breaking down of communication and the relationship as a whole.
The Invisible Disabilities Association Founder and President, Wayne Connell and his wife, Sherri, know all too well how relationships can suffer or even end. Wayne believes that loved ones need to learn what he calls, “The Language of Invisible Disabilities.” People can learn these communication and support skills by learning what to say and what not to say and why.
When they can discover why a certain comment or suggestion is not well received, they can gain a better understanding of their loved one’s perspective. This allows them to ascertain how and why certain comments may cause their loved one to feel misunderstood, judged or as if their situation, losses and perseverance are being minimized. As a result, they can move on to learning what kinds of interchange and assistance gives hope, encouragement and the strength to keep fighting.
All of these things are addressed in IDA’s book, But You LOOK Good! How to Encourage and Understand People Living with Illness and Pain, written by Wayne and Sherri (all proceeds go to IDA).
This book gives practical tips on what to say, what not to say and how to help. It also gives insight into why, we as humans, often respond the way we do to debilitating conditions that are not readily obvious. It shares how we may protect ourselves and try to protect our loved one with denial. And it explains how a loved one may appear as if they do not care, when in fact they do. Yet, they just find it too painful to acknowledge the situation, because they don’t want to see their loved one suffer. These points not only help friends and family, but they also help those living with illness or pain better grasp where their loved one is coming from as well. These are the first steps to restoring relationships.
The video below is from the Online Seminar, What to Say, What Not to Say and How to Help People Living with Illness and Pain with Wayne and Sherri Connell. It was presented during the 2012 National Invisible Chronic Illness Awareness Week (NICIAW), founded by Lisa Copen. Wayne and Sherri were Special Guests for the NICIAW Seminar, Invisible Disabilities and the Husband as Caregiver in 2010 that was also featured in 2011. IDA has been involved in the NICIAW week since it’s inception in 2002.
This article first appeared on the Invisible Disabilities Association Website.
RELATED ARTICLES
Chronic Illness Tips: 263 ways to more than “just get by.” Available to download for FREE! Tips adapted from IDA’s booklet, But You LOOK Good! into a collaborative project by NICIAW Founder, Lisa Copen.
FREE Chronic Illness Tips eBook with IDA Founder. Chronic Illness Tips: 263 ways to do more than “just get by.” Lisa Copen and Friends. Rest Ministries.
IDA Founder Guest Speaker for National Invisible Chronic Illness Awareness Week. IDA Press Release. July 15, 2012.
Invisible Disabilities and the Husband as Caregiver. IDA Founder and President, Wayne Connell. Interviewed by Lisa Copen on BlogTalk Radio. National Invisible Chronic Illness Awareness Week Online Seminar. September 16, 2010. Featured again September 2011. Listen Here
What to Say, What Not to Say and How to Help with Wayne and Sherri Connell. Online Conference Guest Speakers for the National Invisible Chronic Illness Awareness Week. Founded by Lisa Copen of Rest Ministries. Video.
I finally made it to the Toyota Elephant Passage at the Denver Zoo!! I absolutely love, Love, LOVE elephants!! I am cRaZy about them!!
I had not planned to return to the zoo, because it broke my heart to see the elephants in a small space. When I heard about their new bard and yards, I had to go see!
I live with Progressive Multiple Sclerosis and Late-Chronic Lyme Disease, so every day I feel like I have a horrible case of flu and can barely get out of bed, get my food or take a shower. So, as you can imagine, getting to the zoo is quite an endeavor.
What’s more, we had to wait for a day that wasn’t too hot and not very busy, due to my chemical intolerances. Thankfully, I only ran across a couple of situations and was able to speed away on my scooter!
I don’t like seeing animals confined and I would love for all the zoos to be closed and only have reserves for those animals who need to live out there lives, endangered species or injured animals.
But for these particular elephants who are having to live in a zoo, I am happy to see that they have built this new space for them! There are three yards with pools and the barn for four elephants.
Twice a day, they have a show in the amphitheater. However, none of the animals are forced to come into the yard nor are the forced to do tricks. They are “asked” to do the tricks and rewarded whether they do them or not and they do not have to do anything if they don’t want to. That is a great improvement!
On the day we were there, Groucho came into the theater and was happy to jump in for a swim, some treats and applause. He even took his time leaving, but was free to go when he pleased.
I wish I could free Groucho and all the animals from all the zoos and circuses! Still, I am thankful they are getting much better treatment and have a nicer place to live. I am hoping this is the beginning a wake up call for all zoos to provide much better surroundings for all animals!
Personally, I financially support the Elephant Sanctuary in Tennessee and have told many people about them over the years. I have linked to their website, videos and even posted Shirley’s birthday on my page. They are a fabulous reserve where the elephants roam free during the day on 250 acres and come into a large barn at night.
I encourage everyone to support various reserves, especially those like the Elephant Sanctuary, so that more work can be done to help give formerly abused and captured animals the retirement they deserve, as well as help populate endangered species and mend those who have been injured.
Snickers is not only my pet. She is my precious baby and she alerts me when I have anxiety, stress, blood pressure, heart rate and sugar changes. She paws me, nudges me, sits on me and licks me until I calm down. When I am on the ground and need help, she barks and goes to get my hubby. She also alerts me when there are gas leaks or other smells in the house. Most importantly (tee hee), she barks (relentlessly) when she is out of water or food. Good thing! Cuz I’m doing good to remember mine!
An Alert Dog is just one type of Service Dog, which is trained to assist a person with a disability, by performing tasks that mitigate their disability. There are many specific requirements and qualifications for being a Service Dog.
Alert Dogs help many with PTSD, TBI, Diabetes, Autism, anxiety disorders and more. Many can even remind people to take their medicines, wake them up from nightmares, retrieve items and even call 9-1-1.
Although Snickers can perform several tasks for me, I do not take her to restaurants and such. She does not at this time have the proper behavioral training required to stay focused on me. However, we did take her on our latest trip out of town, in which she was a huge help in keeping me calm and watching out for me in the car and where we stayed.
Therapy Animals and Emotional Support Pets are not the same as Service Dogs and are not granted entrance into public places. However, Therapy Dogs that have had specific training can receive permission to enter such places as hospitals, long-term care centers and schools for therapy purposes.
Read about Service Dog guidelines and requirements from the Invisible Disabilities Association.
NOTICE! I do my best to relay information, despite my severe cognitive dysfunctions. Yet, I may not always convey what I intended to say. Please remember that I am not a medical or legal professional! Seek legal or medical advice from an expert. Thanks!
My husband’s cousin, Brady Renshaw, recently participated in the 2012 Fight for Air Climb in Chicago, hosted by the American Lung Association.
The climb was in the Presidential Towers, which consisted of 2,340 steps, 180 floors and 4 towers! Brady finished in 7th Place with a time of 18:20. Congratulations, Brady! His brother, Cody did an excellent job filming it! Watch Cody’s video here!
In light of Brady and Cody’s adventure, I was motivated to do a challenge of my own. Watch this video if you are in the mood for a little inspiration, entertainment and humor! It’s not what you might think it is!
Buckle your seat-belts! The fun starts in 5-4-3-2-1
The Tower Climb Challenge by Sherri Connell
Brady said,
“I Love it Sherri:) The message is a great one. People with disabilities face challenges that would make the most hardcore athletes cringe. People should remember to praise and encourage those fighting disabilities just as they would an athlete overcoming difficult challenges.”
Cody said,
“Sherri, kudos! Fantastic and funny as always while still delivering a good message. We are actually in Basel, Switzerland for a race today and I watched this in the morning before the race.
What my video doesn’t show is the hundreds of stair climbers that are just doing it to finish or maybe best their previous times in support of charity. There is a CF race in Dallas in which the winner finished in 10 minutes. Another winner that day (and probably the bigger winner) was a lady named Holly. When she was born in 1979, her life expectancy was no more than 18 years. She has Cystic Fibrosis and she did all 70 stories with a time of 44:57. According to the time sheet she was in next to last place, but clearly she won and gave it everything she had within her physical limits. I find that inspiring and thought I would share.
We’ll have to come over and climb Connell tower sometime, but only if you add a water stop at the midway point!”
