Loving Kirby

An inside out perspective of Multiple Sclerosis

[loving-kirby]

There’s No Place Like Home

Kirby and I are in the process of moving. We have been married for twenty-five years and lived in the same house since day one (below). It has been remodeled at least four times, and we have made it something we are proud of, but we thought it was time for a change. 

We have a large yard that requires a great deal of work in the summer. Heat is difficult to deal with when you have multiple sclerosis. I work very hard to protect Kirby’s energy and prevent a setback, so I do the majority of the outside work. Many times I will work fifty hours in a week and spend ten more hours on weekend yard work. We decided that we need to spend time doing more things together, so we are moving to town. 

We are moving to a great neighborhood and we love our new house (above) that needs some TLC too. We are so excited go from all the yard work to walking hand in hand to the movie theater, coffee house or farmer’s market and enjoying our small town. We can do things early in the day or late in the afternoon to keep Kirby out of the heat.

In the blog profile picture (above), Kirby is wearing his “Home T”, it is his favorite shirt. “The Home T” donates 10% of their profits to MS research https://www.thehomet.com/pages/our-story. The kids and I have a Home T too, we are showing our love and support for Kirby and others dealing with MS. The term “Home” means so much. It is safety, shelter, comfort and our soft place to land. We know although we are leaving the house we worked on for twenty-five years, it is just a house, our “home” is wherever we are together. Together we live our lives, do our best, enjoy our blessings and through it all you can rest assured, I will be Loving Kirby.

[loving-kirby]

My Man

Kirby is perfect in my eyes, I have realized this over time. While he often struggles with the changes occurring in his mind and body, I just see my best friend, my husband and my man. I work to build him up every day.

A while ago, my parents found a video of us in Show Choir. I actually had to walk into another room to hide my crying. I was shocked by the differences in Kirby’s physical abilities. While day to day his decline is not apparent, it was quite obvious in comparison to 15 years before. 

I now know I have changed too. We both live with MS. Kirby from within and me by association. We have adapted to the gradual changes in our life. For example, I reach for Kirby’s hand to help him down stairs, he never asks, I just know he feels unstable walking down them.

While things are not always easy, we are blessed! We have so many things to be thankful for, but most of all we have each other. Kirby loves me and as you know, I will always be loving Kirby.

[loving-kirby]

With Purpose

The purpose of Loving-Kirby is to share the perspective of a caregiver for someone with a chronic illness. In this case it is my perspective on my husband’s life with Multiple Sclerosis, it is truly OUR journey.

What would make someone seek a blog like mine?  I think everyone wants to know they are not alone.  I hope it is comforting to see us navigating through this life long affliction. 

Why is my post so focused on Kirby rather than myself? I need to bring the readers into my life. I want them to understand why I am so passionate about Kirby. In time, I will highlight my experiences too.

There are days that he struggles and I struggle in my own way as a result. I hope to bring awareness of the disease and resources to those effected.

The National MS Society offers this helpful guide for MS Support Partners. https://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-A-Guide-for-Caregivers.pdf 

There are ups and downs in every life. 

This is ours and you can bet through it all I will always be Loving Kirby. 

[loving-kirby]

In Case I’m Away

How to help Kirby if I am away from home at bedtime.

Kirby gets very tired at the end of the day.

There is a few things he needs to help him be more comfortable at night.

#1 Place Kirby’s buffalo-checked blanket at the foot of the bed.

#2 Go to the freezer, and locate an ice pack in the lower right basket.                  Kirby will place it on his shoulder with your help.

#3 Open a package of Hot Hands located in the nightstand top drawer.                  Kirby needs these for his finger tips to help with circulation.

#4 Check the nightstand to be sure the thermostat remote is within his reach.  Kirby’s internal temperature fluctuates and he needs it near.      

Kirby is strong and capable, he just needs some extra assistance when he gets tired. I am always happy to help, and I am always loving Kirby!

[loving-kirby]

You Don’t Look Sick!

Multiple Sclerosis is often an “unseen” disease.

Kirby hears it all the time, “you don’t look sick”.

He never says he is “sick”, he refers to it as a condition or affliction.

YOU DON’T SEE WHAT I SEE

Kirby was laughing in this picture, because he was struggling to focus.

Sometimes we laugh to keep from crying.

His vision is impaired due to a lesions near the occipital lobe of his brain.

YOU DON’T HEAR WHAT I HEAR

Kirby is always in charge of the remote while watching television. 

Another side effect of MS is tinnitus, a constant drumming in the ear. 

YOU DON’T FEEL WHAT I FEEL

This was Kirby’s birthday, he was excited to received copper compression socks from our daughter.

He often has pain and heaviness in his legs.

Kirby is very loved, over the years he has received many gifts geared at alleviating his discomfort.

I’M NOT DRUNK, I HAVE MS!

This is one of Kirby’s favorite lines!

He is so wonderful, I just can’t stop Loving Kirby!!

[loving-kirby]

One Foot in Front of the Other

When I met Kirby one of the things that drew us together was our love of music.

We were both in show choir and loved to sing and dance together.

This is us at a dance in middle school.

When Kirby was diagnosed with Multiple Sclerosis we thought those days would be over, and that broke our hearts.

There has been several physical impairments and setbacks, but overall we are blessed. Kirby has Relapse-Remitting MS (RRMS) which means he has flareups but the symptoms usually diminish after some time and may or may not leave permanent damage.  

Kirby and I on Beale Street in Memphis, TN, a music mecca!

He struggled for sometime with Foot Drop. This caused him to lose the ability to raise his forefoot. For a time he had to wear a brace to keep from tripping while walking, let alone dancing.

Even when he wore his brace, we DANCED. We have danced nearly every day of our lives together. Even just for a moment, just because we can.....

I just can’t help.........loving Kirby!!

[loving-kirby]

Mustard Seed Faith

"Faith the Size of a Mustard Seed" by Dane Vandeputte  is licensed under Creative Commons

I am a spiritual person, however, sometimes it hangs by a thread.

There are times I struggle and question the GRAND PLAN.

My role as Kirby’s wife, partner in life, and caregiver is the STRONG ONE.

This is a role I fail over and over.

This scripture from the bible brings me comfort...........

“You don’t have enough faith,” Jesus told them. “I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, ‘Move from here to there,’ and it would move. Nothing would be impossible.” -Matthew 17:20 NLT

Look at that SMILE! It may only be the size of a pinhead at times, but I remain faithful. He counts on me, I never want to let him down, and I will always be loving Kirby.

[loving-kirby]

[loving-kirby]

In the know.....

Kirby means so much to so many. He is a husband, father, son, brother, friend, uncle, etc….. He is works very hard as an insurance agent and is a member of various civic organizations in the community. While his family and close friends are well aware of the MS, others are not. He puts on a brave face while out and about, and never complains about his symptoms, but there are issues YOU CANNOT HIDE. Today was the annual Apple Butter Festival Parade. Kirby is a member of a group that walks the parade route handing out American flags. Sometimes MS and walking don’t see eye to eye, especially when you add distance and heat, but he wants to participate like everyone else. He was stumbling a bit to keep up and nearly fell once on a group of people sitting along the street, when he lost his footing. He shared with me that he was embarrassed when one of our “UNKNOWING” friends said, “please don’t fall on us”. While I tell him that she did not know what was going on and everyone trips from time to time, I am sad that it occurred. When this sort of thing happens, I make a mental note to share his affliction with that person next time I see them. I do not want to make them feel bad, I just want them to be aware of his symptoms. I am ALWAYS watching out for him, I will ALWAYS have his back, and I am ALWAYS….loving Kirby.

[loving-kirby]

Health....

is something most of us take for granted, especially when we’re young. In 2005, we were standing in a doctors office. Kirby had been having some “VISION ISSUES”, and his optometrist said he needed some blood work. After following up and a battery of tests, the doctor called and asked us to come into the office. I was very scared but trying to be optimistic and supportive FOR KIRBY, although he is always calm and strong. The doctor looked at my 32 year old husband and said, “you have MULTIPLE SCLEROSIS”..................the air went out of the room......tears fell down my face and a smile came across Kirby’s. I felt like someone punched me and he was happy! I said “WHY?”!! He smiled again, he looked in my eyes and said, “I thought I had a brain tumor, I thought I was going to DIE, we can live with this diagnosis.” At that moment I realized he had been keeping other symptoms from me and issues had been going on longer than he had let on. He has a way of dealing with a moment and keeping me centered, just one of many reasons I am always...............loving Kirby.

[loving-kirby]

The gem cannot be polished without friction, nor man perfected without trials.

Chinese Proverb