In this Bitstrip, I have my amazing sister in law, Melanie spending time with me!
Sad she lives so far away!
Getting my mom there was a challenge due to her health and battle with lung cancer and my sister is fighting breast cancer. She has had several surgeries and a ton of chemo treatments. This summer, she will be facing radiation M-F for six weeks!
Being there without my brother was extremely hard on us all. We went to his grave site and bawled in devastation. This was the first time we had seen the bench my sister designed and it was breath-taking and the most amazing memorial I have ever laid eyes on. It was incredible!
I looked for you at home.
I looked for you at your grave.
But you are not there.
Where you stood beside me
and where you loved me,
there is a giant hole.
I wish you were in my arms.
But I rejoice that you are with Jesus
… and you are in my heart.
I love you Big Brudder!! My life is not the same without you.
Snickers is my 11 year old Shih Tzu. She never ceases to amaze me how she alerts me when my body goes into fight or flight, my blood pressure goes up, my sugar goes down or there is a dangerous smell in the house like rotten vegetables in the fridge (happened once) or mold in the bathroom.
See what else Snickers is up to. She hates the video camera, so it is hard for me to get video of her doing all her incredible things. She stops as soon as I turn it on. Now that I have video on my phone, I am hoping to catch those moments, as well as dozens of cute things she does!
Drive-In Dinner with the Doggie:
What Does Snickers Want?
MORE FUN VIDEOS OF THE AMAZING SNICKERS:
Even as a child, I told my mom I would take care of her when I grew up. In my twenties, before I got sick, I was looking at a townhouse to buy for her. I always imagined I would provide her a home and wonderful care. But I can’t even care for myself and need help too.
So, Wayne does a lot of shopping for her, I do things remotely with ordering and other things, give her rides when I shouldn’t, help her around the house when I can barely stand, etc. 1-2 times a week. I have been unable to do my own therapies, doctor appts, dishes, etc. but I wish I could do so much more!! She is so alone and needs help daily!
Thank you to Mary, Barb, Briana, SR and Pam for helping her when you can and most of all for being a friend to her! I cannot tell you how much your love means to my mom and to me!!
Do any of you know a nice lady who might need a cheap place to live in exchange for helping her part time? The landlords would raise my mom’s rent, so there would be a small charge depending on how many hours the person helps. Just a thought.
I have blocked my mom from this post, because she feels horribly guilty when people help her and hates being in this position! I am sure we all will when the time comes. But at least most people have a child or relative who is not ill and sometimes the means to get other help.
Honestly, with losing my brother then getting Peppermint Patty intended for good therapy turning out to rip out my heart and several other tragedies and challenges that I keep getting hit with, on top of normal daily mountains, I have never been in such a bad place.
Thanks for listening and thank you for your prayers,
In the past 18 months our family has been through some very serious tribulations. As you may know, I fight for my life daily due to Progressive Multiple Sclerosis, Chronic-Late Lyme Disease, Chemical Injury and Brain Injury.
In 2011, our mom, Carole was diagnosed with lung cancer. She is still battling it and we are both unable to care for our daily needs.
Later in 2011, our brother, Jim, unexpectedly passed away. Our family has been in deep mourning for his loss. Jim was one of those men who was always there for his family and friends. He was our champion, protector and I can’t even begin to express what a hole he has left in our lives.
Now, in December 2012, my sister was diagnosed with cancer. At first, they thought removing the tumors and having treatment would be the plans. But after her surgery, there was concern about the lymph nodes. She underwent a mastectomy and had over 20 lymph nodes removed (about half were malignant).
Everyone who knows my sister, knows she is a very strong and courageous woman! What some may not realize is that she is the glue that keeps everyone together. She is the one who “gets things done” in our family, with her grand-kids, friends and in her business. She is Superwoman!
Like many, with the economy, Deb and her husband’s businesses have been down (she is a graphic artist and he owns a drywall company). However, now they also have the added burdens of medical bills, deductibles, co-pays, coinsurance and expensive out of pocket medications.
Currently, she is now receiving chemo. As many experience, she lost her hair and struggles with debilitating fatigue, which is cutting further into her work and time with family.
I am trying to set up a fundraiser for my sister on Indiegogo. Thank you so much for considering helping me help my sister get through yet another major life challenge for our 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!
Holy Toledo! How cool is this! HuffPost LIVE by The Huffington Post, produced and broadcast a video segment about my story! The show was titled, “A Tick Bite Changed My Life Forever” which was hosted by Nancy Redd.
Immediately, my video segment got over 119,000 views and it continued to get thousands of view on their website and AOL!
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.
HuffPost LIVE created this show from the original video interview and article on 12-12-12, with Wayne Connell (my hubby), the founder and president of the Invisible Disabilities Association, our friend, Karyn Buxman, RN, MSN, another guest, Elsa Sjunneson-Henry and me. The show was titled, “Not Handicapped Enough.”
The last time I saw my brother, Jim, was on Thanksgiving 2011. He passed away 4 weeks later. On our way to his memorial service, I asked God for a “Miraculous Rainbow.”
We were in the mountains, facing the sun and it was winter without any rain. Impossible, right?
Nope! We turned a corner and saw the most spectacular colors from one horizon to the other! When I tried to take a picture of it, this is what showed up … a giant RAINBOW leaping out of the sky and into our car!!! Amazing!
This year, we were without my brother. But when we sat down to eat, there was the rainbow in several beams of color shining across my plate and setting (the photo doesn’t do the colors justice). Thank you, Lord for the reminder that Jim is with you!
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.
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.
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.