Copyright 2014 Sherri Connell.
All rights reserved.
Copyright 2014 Sherri Connell.
Copyright 2014 Sherri Connell.
All rights reserved.
I have made a big decision today. I am quitting my 24 x 7 job of fighting for my life, which COSTS me money and getting a new job that’s just 40 hours a week that PAYS me money!
I am giving up spending all day every day doing therapies, doctor appointments, spending time in waiting rooms, time getting testing, filing insurance claims, paying doctor bills and preparing special diet foods for a job that pays $85,000 a year!
By next year, we should be able to pay off my bills, move to a new home and start going on some vacations! Wow! Why didn’t I do this many years ago?
April FOOLS! Don’t I wish I had that choice!!
The moment you all have been waiting for!! OK maybe not, but here it is! The video of me speaking at the 2013 Invisible Disabilities Association Awards Night. Special thanks to CBS4 Ed Greene for helping me out!
I guess the biggest things I miss about work are being healthy, being able to get up in the morning, shower and dress, getting a lot done, spending time with people, feeling accomplishment and getting a paycheck.
Instead, I am at home, in pain, feeling like I have the flu and my job is to do my physical therapy, try to get my food, make doctor appointments, go to doctor appointments, file insurance claims and try to wash my hair once in a while. Not only am I missing a paycheck, but I get lots of medical bills instead.
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!
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.
Thank you all for your love, calls, cards, help and concern!! As many of you know, my mom has been battling lung cancer and other complications since January of 2011. She took a bad turn in September of 2011 and again after her treatments in October.
Last week, she was in the hospital again. Her BP skyrocketed and her heart rate was irregular. She collapsed and could not walk unassisted. They did a stress test and did not find the cause. They sent her home. She is still so weak, she can barely go from her bed to the bathroom. Today, she can’t even heat up her already prepared foods.
For the past 6 months I am finding I am being asked some of the same questions about her situation. So, I would like to answer some of them here.
Background: With my own illness and with IDA, as you can imagine, we are pretty well educated in the Medicare, Medicaid, Home Services Industry, Social Services, etc. Also, when I became ill, I had no insurance, no home, no hubby. I got my mom hooked up with Social Services many years ago and have been working with her Social Worker. I have also talked with Medicare, Medicaid and a specialist about a State Waiver for Home Care, Meals Services, Hospitals, Patient Advocates, Nursing and Home Services, Assisted Living, Attorneys and more. When she took a bad turn January of 2011, I stepped it up and then again last September.
TOP QUESTIONS People Have Been Asking:
1) Can’t she move in with you?
2) Can’t you get her home care?
3) Can’t she stay in a nursing home or assisted living?
4) So, what do we do?
5) How can people help?
Thank you all for your love, care and support for my amazing mom! She is an incredible lady and I hope that she can be showered with prayers and hugs in her very difficult time of battling lung cancer and losing her baby boy!!