Living with Pain - A Long Rough Road

Be Strong

by Stacey Kuhns

Stacey with Service Dog Henson

As I embark on the road to a healthier lifestyle I reflect on the trails that got me to this point in life. After much research, reading, and just plain living, I realized that I have been dealing with the same health issues since I was a child.

Back then, doctors would have never guessed what was going on and no one ever looked at my issues globally, taking the entire body and its systems into account.

College is when everything came to a head for me and I was extremely sick, physically and well as depressed. My mom came down to the school a few times to take care of me and take me to and from the hospital. Still, no one figured out what was wrong with me. Doctors seemed stumped.

I got to the point where I assumed being in pain throughout my entire body was normal and something I would have to live with the rest of my life.

While working in law enforcement, I spent a year in a wheelchair, thinking I would never walk again. I still came to work every day (except when I had medical appointments), and I feel continued to work at 100%. When Defensive Tactics classes became a requirement for the County of San Diego, my doctor advised me that I could become permanently injured if I took the class. It didn't take the County long to decide I could no longer do my job (even though I was an investigator and they have since put those classes on hold). Anyway, water under the bridge. Point is, I had to retire 9 years early, giving up a 21 year career and losing a lot of pay.

It took until my 40's until I was diagnosed with one of my diseases and until my late 40's until a pain management doctor finally put the pieces together for me, diagnosing me with my second disease. That diagnoses also made me permanently disabled in the eyes of the state, but I do not receive a monetary payment for being disabled. I was not medically retired from work either, as they felt my conditions were not caused by the job. I do receive Medicare as my sole benefit of my "settlement".

It has been a long rough road. There is no cure for either of my diseases. There are lots and lots of medications that supposedly help ease the pain a bit and make me "comfortable." Some days, that is a laugh as comfortable is not even in my vocabulary.

Many days I wanted to die and felt there was no reason to go on. Why live every day in intense pain. What does being here serve when I can barely dress myself or get undressed by myself? And chores and grocery shopping...sometimes I cannot wait to get back out to the car so I could burst out sobbing.

My diseases are two of the long list of "invisible diseases*." People don't believe you are really sick. They think if you lose weight, you will be cured. If you just go out and exercise a lot, you will be cured. I was advised by my doctors to swim (as walking is extremely painful for me.) I love swimming but one hour of water aerobics would put me in bed for two days with excruciating pain. I persevered, went to counseling, cried a ton, and luckily have an amazing group of close friends who helped me and supported me. (You all know who you are). I also had many friends who dropped out of my life because of all this. People that I felt were almost family, that I had known over 20 years. I don't get it, but whatever. And I even had family members pull away because I was no longer the one doing everything for everyone and was no longer superwoman.

Ed and Stacey

I am so thankful for the people in my life now and those who have remained by my side. I am thankful to the trainers at Kindred Spirits Dog Training who made me feel that training my service dog was possible (even though there were times I was overwhelmed and wanted to give up). I am thankful to David for suggesting a service dog might be a help to me. I am so thankful to my amazing parents for always being there for me, for Ed who loves me unconditionally and accepts me and has provided me with adventures I never thought I would be capable of doing. For Chuck who has always been there. For my amazing girlfriends old and new who I love so much.

I know that eating right and exercising as much as my body can handle will provide wonderful benefits for me. Losing weight has never helped my pain levels but I am finding alternative things that are helping. I am getting good medical care.

Henson

I plan to keep keeping on. I plan to live each day as it comes and listen to my body and do what I can. I hope to keep volunteering (as I have come close to quitting so many times due to how physical the job is and how high my pain levels have been), and I hope to keep learning and growing with Henson, eventually completing the Therapy Dog class and taking him to make others feel better, even for a short time.

For all those suffering invisible diseases. I get it. I am with you. Be strong. Never give up because there are so many people to reach out to, people who really do care. Hugs!

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*According to one study, more than 125 million Americans have at least one chronic condition (defined as a condition that lasts a year or longer, limits activity and may require ongoing care) and nearly half of those have more than one. These chronic illnesses often share one major characteristic: they are not visible to an onlooker; thus the term “invisible illness.”