More than a minor inconvenience……

     I authored a book in 2002, titled, “A Minor Inconvenience”, a self-published book about my life with multiple sclerosis.  I thought  about,“My Ongoing Inconvenience” as a title  for this blog, then thought about,  “What a trip” or “What a ride”,  because I think these titles would make better products, such as hats, t-shirts and coffee mugs.  I like “What a Ride”, because I could maybe include a picture of my 4-wheeler, but what a trip is very appropriate, considering how clumsy I’ve become and how tripping is a very likely occurrence.  My daughter-in-law thought I should call it “Thriving with MS”, because she thinks that’s what I do.  (Awww, sweet.). I’ve decided on “LifewithMS”.  It’s a trip, it’s a ride, it’s a mess, it’s great, it’s challenging, it’s B.S…..  The list of what it is could go on and on, and it changes all of the time!  Life is something, living with MS!

     July of this year, is the 34th anniversary of my diagnosis of multiple sclerosis.  Since being diagnosed, Bob and I got married, and have raised two remarkable sons.  Though I would never wish to have MS (nor would I wish it on anyone else!), my life has been great so far. Different than what I had anticipated maybe, but still pretty great.  I guess one needs to realize once the shock of being diagnosed with MS settles,  it is necessary to adapt accordingly.  Life seems to throw what it will at me, what can I do but do the best I can with what comes my way?  Isn’t that basically what life is?  Life doesn’t come with any guarantees, only that you’ve been given what you’ve been given.  Make the most of it.Yes, I could be depressed about all that I am now incapable of. I choose to take pride in what I can do. It might not look like much, but I know the effort it takes, know it’d be easier to give up and know that I’ll push my limits to achieve what I can.

     I’m grateful that I was able to drive a car through our boys’ childhood.  Two busy boys required a lot of transporting.  Driving is  a requirement of life. When they obtained their learning permits, I enjoyed the luxury of being shuttled to where I needed to go.  Shortly after obtaining their licenses, I could no longer pass the vision test to keep my license.  Since that time I’ve only been issued a state identification card. I definitely miss the independence of having the ability to drive!

     I  believe I’m learning that once you have an auto immune disorder such as MS, other auto immune disorders can appear.  (Like dealing with one that changes and worsens over time isn’t enough.  Let’s throw even more adversities at her and see if we can knock her down!)   I’m still standing. Yes, I’m using my walker, but I’m still standing!

     I just assumed that the bowel issues I was experiencing were another inconvenience due to multiple sclerosis.  When I told my doctor  what was happening, she ordered a colonoscopy to be done,  it showed that I have colitis. {microscopic or lymphocidic colitis)  So now, I’m learning how to live with this disorder. Fortunately so far, I’m controlling it primarily with diet, supplements, and a few lifestyle changes.  I can no longer consume the spicy foods I love and ate frequently, but it is worth it to me to follow a gut-friendly diet.  Some bland foods are quite tasty.  I can’t eat all of the raw fruits and vegetables that I used to, but  thankfully there are supplements that offer the nutrients needed.  Fortunately, I’ve never been a big consumer of alcohol, because alcohol causes flares too.  I do however, miss my margaritas, a shot of tequila or a glass of wine whenever I want one!

     I try to be thankful for all that I can do.  It is best for me to be happy with the things I can do, rather than compare what I do now with what I once did.  I enjoy riding my tricycle whenever I want, and still get on my mountain bike when Bob is with me.   He has to help me get off of my bicycle when I’m done.  Hooray for my four wheeler. It offers some freedom!  Dirt or snow, I get on it and zoom all over the property. I go riding with the guys when they’re on their motorcycles too. I just love it.  Dang it, I think I may have cracked a rib, I rolled the quad and got pinned under it. Stupid me, I really do need to be more careful. There’s no need to go so fast and try to slide.  That’s it, I’m going to start acting my age! 🙄

Diagnosis………

     Like I said, this July is 34 years since my diagnosis of MS.  I’ve had MS most of my life.  ( I’m 56 years old).  Thoughts of what life was like without it, are distant memories.  I remember what life was like without it though.  Memories of my much younger years!  I remember walking the balance beam in gymnastics.  I remember playing tennis, I remember running the bleachers, in track.  I remember confidently doing Pom routines, at school assemblies.  I remember dancing in high heels in the Miss Colorado pageant.  I remember walking for what seemed like miles, pheasant hunting.  I loved backpacking and hiking in the mountains in the warmer months and loved skiing those mountains, in the winter. My father is a race engine builder, so I got to drive race cars.  I’ll mention these activities to my sons and they’ll say, “I can’t believe you used to do those things, mom!”  I’m glad I’ve done so much, before MS kept me from doing so much!  

     Bob and I used to ride our mountain bikes a lot.  It was while mountain biking. In the heat of summer, that my first symptom appeared. At the time, I didn’t think of it as a symptom of anything.  I just figured I was pushing myself too hard.  After cresting a hill, I told Bob, “I need to sit here a minute. I can’t see well.”  When my body temperature cooled down, my vision came back.  I was young and healthy, I think I figured this can happen to anyone.

     In July of 1989, I woke up one morning and couldn’t see.  I squinted, rubbed my eyes, closed one eye-fine.  Closed the other, nope.  It was like I was trying to look through a cotton ball.  Bob was out of town, so I just drove to the doctor’s office.  The doctor checked my eyes, and said they seemed fine. He said I should go to an optometrist and look into glasses or contacts.  Bob and I were getting married in three months, I thought maybe I’d be sporting a new pair of glasses in our wedding!  I called Bob and told him the story.  He didn’t think that sounded right and said I should call my parents.  I called my mom and dad and told them how I woke up, unable to see out of my right eye. They sounded concerned and said they were going to call a friend of the family, who is a nurse. 

     They called me back with the name of a neurologist  our friend gave to them.  I saw the neurologist, who then sent me to see an ophthalmologist.  My optic nerve was swollen.  (Optic-neuritis)  He told me optic-neuritis can be a sign of a neurological disorder or a brain tumor, but sometimes it just happens.  He gave me a prescription for prednisone to reduce swelling.  Hooray!  My vision started to get better!  Uh-oh…I lost the vision in my other eye!  Neurologist, ophthalmologist, optic-neuritis.  The neurologist scheduled an MRI.  He wanted to make sure a brain tumor wasn’t causing this.  WHAT?! A brain tumor!

     I  didn’t mind the MRI.  I kind of just napped while the scan was being done.  I’m not sure my husband would like having an MRI done.  He’s quite claustrophobic!

I was at work the next day, when  the neurologist called me, with the results.  “There are no brain tumors Kim,  but  you definitely have MS.”  (Thank you Lord, no brain tumors.  I just have MS! )  What is MS?   What does this mean?   What can I expect?  Can I get glasses?  I was told  glasses wouldn’t help, because  my eye was doing it’s job, the nerve just wasn’t  relaying the message to my brain.  They couldn’t tell me what to expect, we just had to wait and see what the course of my disease would be like.  Oh, okay…..

Four eyes……….

     I’ve shared how my Multiple Sclerosis journey started, optic neuritis.  I read somewhere that having MS start with vision problems , is a good thing because it seems progression is slower when this is your first symptom.  Okay, good.  Even though my vision came back, it wasn’t as good as it used to be. Oh well I figured, things could be worse.  

     One day when the son of a lady I worked with came in holding up a drawing he did.   I said, bring it closer Eric, I can’t see it that far away.  He said, “You can’t see it?  Try my glasses!”   I said , “Okay”, thinking I’d tell him I couldn’t see it with his glasses either.  “Oh my gosh! I can see!”   That’s the day I found out glasses do help!  Since then, my vision has gotten worse.   I still wear glasses.  They definitely help but even with glasses, I can no longer pass my vision test for driving.

     At this point of time, my vision was corrected with glasses, but I began experiencing difficulty walking. Walk, walk, walk, woah, trip.   One evening, Bob and I went to a restaurant.  As we were walking in, a fellow coming out said to me, “Woah honey, have a bit too much to drink?”   Bob got a little perturbed because it was MS causing me to walk the way I was.  I just knew the guy was calling it like he as he saw it.  Shortly after, I went to a neurologist.  She told me I had relapsing-remitting MS, and put me on intravenous steroids, (solu-medrol) followed by a prednisone taper. I almost felt like I was cured! 

Let’s stay pregnant!

     I did talk to my neurologist before Bob and I decided to have a baby.  I did not want to pass this disease on to a child.   My neurologist told me my child would  be at no higher risk of developing multiple sclerosis than anyone else’s child, that MS was probably caused by something my immune system encountered when I was younger.  No one on either my mother’s side or on my father’s side, had multiple sclerosis.

     I felt almost cured when I was pregnant!  Your immune system is suppressed when you are pregnant and while nursing.  I told Bob that I may want to be pregnant all of the time!

     One evening after nursing the boys and putting them in their cribs, I left them with Bob and went to the local gas station to put gas in our mini van.  After going inside to pay, I walked back out and got in the car.   I looked up and a police officer was standing at my window.  I rolled the window down and said, “Hi.”  He said to me, “I’ve had a citizen complaint that you may be driving under the influence.”   I said, “Oh no, I wouldn’t be drinking, I am nursing twin boys who are at home with their father right now.  I do have multiple sclerosis.”   He said, “I’m sorry I bothered you, I can tell you haven’t been drinking.”  I cried on the way home.  Bob looked concerned when I returned home.  “What’s the matter? “ he asked.   I told him what happened.  I told him I never wanted to be an embarrassment to our boys.  I didn’t want their friends to think their mom drinks.  Bob said, don’t worry about that, Kim.  I feel sorry for anyone who says anything bad about our boys’ mom!  They’ll have to deal with both of them.

I ❤️ Bees!

     After my first solu-medrol treatment, I went two years, before I required another treatment. Treatment, two years, treatment, two years, treatment, two years, treatment.  Then treatments were only lasting a year, then 6 months.  One night, Bob and I watched an episode of 20/20 on bee venom therapy and how it benefited multiple sclerosis patients.  Bee venom has anti-inflammatory qualities like steroids do.  We decided to try this.  We had a lot of flowers in the front yard, so Bob went and collected a bee there.   I need to tell you, you should not do this without knowing whether or not you are allergic to bees.  I had never been stung by a bee before, so I didn’t know whether I was allergic or not.  Fortunately. I’m not!  Having never been stung by a bee before, I didn’t know what to expect.  As Bob approached my ankle with a bee held in tweezers, I yelled, “Wait, wait, wait!” Bob asked, “What?” I said, “I don’t know…”  He came at me again, and I yelled, “wait!  He didn’t wait and that bee stung me.  “Oh, okay, I know what to expect now. “  I have since learned that when starting bee venom therapy, it is best to not start your initial sting on an extremity.  They will swell a lot.  My ankle got big!

“Health and the Honeybee”, is a book written by CharlesMaraz.  It was very helpful on learning about bee venom therapy.  This book also showed where to administer the bee stings.  When I told my neurologist that I was going to be doing this, she called in a prescription for an epinephrine shot to keep on hand, should I ever have an allergic reaction to the venom.   When a bee stings something or someone  the bee then dies.  The stinger of the bee is left in whatever the bee has stung, and continues to pump venom.  “Bees are our friends, huh mom? Because they help you!”  Our boys thought it was neat that  ordered bees and they came in the mail.   I was receiving about 30 stings a week, (administered by Bob).  We did this for seven years.   Ididn’t need any steroids during this time.   As it happens, I built up an immunity to the bee venom.   I tried a dosage of solu-medrol again.   It no longer works, either.   I tried  a drug called Rebif  for a short time.   It  is supposed to slow progression, I think. I didn’t stay on it long.   I didn’t like the way I felt on it.   I have taken Baclofen (a muscle-relaxer), and Paroxetene  (generic for Paxil) for years.   They are both necessary

Walking Aides………

     Our boys were 4 or 5 years old when I obtained my first walking “helper”.  It was a foldable “walking stick” that we got at a sporting goods store.  When I used it for the first time, the boys asked. “What is that? It looks like a cane.” I heard the disappointment in their voices, that their mom needed a cane. I said “It’s a walking sick and watch this,” I folded it up and then flung it out, “Whack!” They exclaimed, “Cool! Can I try?” Phew, their mom is still cool…

      I used the walking stick for awhile, until it became not quite sturdy enough. Then I got a real cane.  The boys had become accustomed to me using the walking stick, so this transition wasn’t difficult on them.  I used one cane for awhile, then began using two canes. I also got a wheelchair, for covering longer distances.  I now use a walker most of the time, but still use my wheelchair too.

     I am now considered secondary progressive in my disease.  On top of that, I have another auto -immune disease. microscopic. Or lymphocidic colitis. Colitis is not fun. Colitis and MS are  kind of awful and challenging.  Thankfully I guess, I’ve learned that living with a disease requires research, sacrifices and changes to be able to live the best you can.  No more spicy food or raw fruits and vegetables for me.

     Another thing to mention is how when I do get sick, my MS is affected.  I don’t know if it’s because my body temperature rises because of a fever, or if it’s because my body is fighting something else, but my MS symptoms are worse when I’m sick. The same is true, when I allow myself to get too hot.  Warm temperatures and my MS don’t get along. No more sunbathing or hot tubs for me.  Even my morning shower is cooler than it used to be!

     I have a bunion on my right foot that is fairly bad and getting worse.  Years ago, I saw a doctor about it and was told that with the surgery required, I would be unable to be on my feet for a long time.   We also met a girl at a Christmas party who just had bunion surgery.  She was pretty opposed to the thought of me having it.  I found some socks that I wear every day that seem to help.  Hopefully I can just avoid bunion surgery.

Managing……

     I wouldn’t say, life with MS is fun.  I’ve just learned how to have fun, even though I have MS.  I will say, life with MS and colitis is challenging, and sometimes not fun.  For me, I have a routine, that I stick to in order to have good days.   My mornings take longer than they used to and I just have to plan accordingly.  Though I stay away from caffeine during the day, I start  my day with coffee.  It doesn’t take long and I know I’ll be heading to the bathroom. It takes a bit of time, but I completely empty myself there and know I can have a good day as long as I consume only  gut-friendly foods and drinks!

     Traveling with these diseases takes planning and requires me to stick to my daily routine, but it can be done! Again, watching what I eat, is mandatory, Making sure supplies are packed and always knowing where restrooms are located is just what we do. Bland foods are better and I do not eat raw fruits or veggies, in fact, I don’t eat too many cooked ones either!

     Our daughter-in-law has celiac disease, a friend of our sons’ has IBS, people everywhere, have to deal with something.With a friend going through some pretty intensive cancer therapies, then incredible surgeries to remove tumors and reconstruct a knee and femur, sometimes dealing with MS doesn’t seem so traumatic.  I haven’t been in fear for my life, I’ve never had to have my body reconstructed because of it.  Again, it’s a matter of perspective… I can deal with the inconveniences I’ve been given!

     Supplements I take to help manage my disorders: Baclofen, a prescription muscle relaxer, I take 3 times a day.  Paroxetene, a prescription, I take once a day, three days per week. A daily multi-vitamin, taken daily. Extra Vitamin D and a fruit and vegetable supplement, taken daily.  Boswellia, for digestive health, taken daily. 

     Our second born son, he’s an identical twin who came out only 60 seconds behind his brother in a c-section but still he’s baby b, got married in the Colorado mountains recently.   A cousin of Abbey his soon-to-be-bride, was in the wedding party. She was at rehearsal with us and at rehearsal dinner.  Early the next morning,(wedding day), there was a knock on our bedroom door.  Tommy came in and obviously had been crying. “What’s wrong?”  He then told us that Riley, Abbey’s cousin, died earlier that morning.  She was staying in a hotel room with her parents.  They awoke because Riley was making strange sounds.  When they went to her bed, she was foaming at the mouth. Her father was a retired paramedic and he began CPR.  The ambulance came and got Riley, but she was pronounced dead at the hospital.  What the heck happened?  She was from sea-level.  She was now at 13,000 feet, and she had a brain aneurysm!   Oh my gosh!   I say it all of the time, “Life is something!  (No guarantees!)

Be thankful……..

Another friend of ours had an incident in the bathroom, where all that came out was blood.  It turns out, she has a mass in her rectum. She has beautiful longhair, they told her they’ll do some chemo, and she’s bummed about that.  They have also told her that after the surgery they plan to do, she will have an ostomy bag.  She told us she will not live like that, she’d rather die from the cancer.  I want to talk with her to tell her that even though parts of life might not be great, life is still good and life is still worth living.

I used to keep a gratitude journal, writing down things every day, that I am thankful for.  I think I’ll do this again, it helps me keep things in perspective.

GRATITUDE JOURNAL:

I am thankful to hear that one of our best friend’s cancer treatment worked as well as the doctors hoped.  Immuno-therapy works! The small tumors in Jeff’s lung are gone. Tumors elsewhere are smaller and no longer active. Surgeries can start soon!

His first surgery went really well! I am thankful for this!

I am thankful for the beautiful snow outside. Thankful for the moisture it brings, and am thankful I don’t have to drive in it!  I am also thankful for the warm home we have to protect us from the below freezing temperatures outside!

I am thankful for my husband, who married me knowing I had MS. (“You don’t have MS Kim, we have MS”) He continues to offer so much support!

I am so thankful for our wonderful children!  I love Bobby and Tommy so much, they make me incredibly happy! I am so thankful that they have never experienced any MS symptoms. I ask God all of the time, to please not let this disease affect my children, or their children. Please let me be the only one in our family, to deal with this disease.

I am thankful that I seem to be able to manage my colitis with a colitis-friendly diet.

There really is something to be thankful for every day!

Keep on keeping on…….

Nope, I’m not going to act my age… A friend of ours has a trailer on our property that he is selling. He and a potential buyer came out to look at it. There was still a little snow on the property. I was out doing laps on my 4-wheeler. I probably circled around them 15 times while they were here. Mud had been flying. Both my quad and myself were splattered with mud. The  potential buyer asked Bob, “Is that your son? Bob replied, “No, that’s my wife.” 😁

I still think exercise is important.  These days, I make sure to ride my tricycle three days per week. If weather doesn’t permit this, I ride my indoor exercise bike. On bike ride days, I do push-ups and sit ups. Three days per week, I use my dumbbells and do sit ups.  None of this is excessive, but I think it helps keep me strong. I also stretch my stiff legs once a day.

Trapped, I guess I feel trapped sometimes. I need to figure out what it is I want to do, and find a way to get it done. MS is something… it’s fatigue, it’s dizziness. It’s not being able to see well, it’s weakness, it’s bathroom urgency, it’s BS!

Though I wouldn’t choose to have MS, I would choose it over many other things. ( I would rather have MS than cancer. I would rather have MS than loose a child. I believe everyone has to deal with something. I once heard, we are only given what we are capable of dealing with. I don’t like MS, but I can deal with it. There are some things, I’m not sure I would deal with as well.

Writing a blog, gives me something to do.  I desire to do more, to somehow be beneficial or good at something.  

I  hope that by writing this blog, it puts me in contact with others who are living life with MS. Maybe some of my experiences are similar to some of your experiences.

This blog and the information it contains, is not medical advice.  It’s just life as I know it.