The year I met MS… and met a bundle of joy

     Wow! 2013…what a freakin’ crazy year! Lots of highs and lows, and I am definitely thankful for the highs! (No not that kind of high!!) Interrupting myself- we used to play a game called “highs and lows” almost every night at dinner while our daughter was growing up. The three of us would go around the table and say what our high and low was for that day. It is a great way to engage your children in good conversation, by the way. So now I will play “highs and lows” with you about my pivotal year!

     2013 started with Alex getting legally married and moving into a place of her own. Granted she was only 18, but she was always a precocious, determined young lady and we knew she would be fine. This was bittersweet though. We were happy to be empty nesters, but our daughter wasn’t going off to college, she was starting a family. The birth of our first granddaughter was in April. Oh, how sweet “BabyBells” brought instant joy to me and my husband (despite the fact that we were becoming grandparents younger than we had planned). The delivery was an emergency C-section, three weeks early- extra scary since Alex had been on blood thinners the entire pregnancy and there wasn’t much time to get off of them. But, it went well and Bella and Alex appeared to be healthy. Unfortunately, within 24 hours the doctors determined that Bella was having heart issues and they wanted to admit her into the NICU. It was so hard to visit her in there and wonder what her future held. Fortunately it was only for five days- it was a heart condition that she was born with, but quickly outgrew. Mommy and baby got to go home!

    It was June, and our area had just experienced another devastating fire. One of my dearest friends (who so happens to be my ex-step sister) lost her house and all of the family belongings in the Black Forest Fire. Just over a week later, I went with Alex to the ER because she was having extreme abdominal pain. It turned out to be her gallbladder, so they kept her there and removed it the next day. Alex was not recuperating like she was supposed to however: high fever, and non-stop vomiting. Luckily her ex mother-in-law is an LPN and was paying attention to what her other caregivers were missing. Unfortunately, the ERCP after the gallbladder surgery caused acute pancreatitis and she ended up being moved to another hospital and put into the ICU. She had several more surgeries and procedures over the next few days, and ended up being in the ICU/hospital for 15 days! I have never experienced pain and fear like that in my life! I couldn’t even eat (you know it’s bad when I can’t eat!!!) We were afraid for her life, not to mention she had an 8 week old baby girl that she was unable to hold and nurse. By the grace of God, she was released on July 4th and we were somehow able to pull off a beautiful wedding/baby christening less than three weeks later!

     Things seemed to be going well for a while, except for watching our daughter struggle a bit in a young marriage. Then, one day in August, I woke up with the right side of my face numb. Like the kind of numb you feel when you get a Novacaine shot and it is starting to wear off. After talking to a doctor client, my chiropractor, and my physical therapist, I got an adjustment and indulged in a good massage thinking that I just had a pinched nerve. After a week or so the numbness finally went away. But almost immediately I started experiencing numbness on my right side, from my torso down to my foot. This seemed to cause more alarm in others (and myself!) and no one would touch me until I saw a doctor.

     In the meantime it was our 20th anniversary and we had a trip to New Orleans already planned. It was good to get away and try to get my mind off of what was going on with my body. But it was never really out of my mind. I had this fear that I could have Lou Gehrig’s/ALS like my mother did. I remember sitting in a bar in the Big Easy watching my husband’s face lit up with pure excitement as he got to listen to, and meet, one of his favorite drummers of all time. I was sitting on a stool just observing (which I would normally never do, but my leg and foot were bothering me too much to stand much more at the end of our busy day). I was trying to keep my mind off of the numbness/burning/tingling happening down my entire right side. But I was scared- I had to admit it to myself- and I couldn’t stop the tears from falling…Good thing it was dark in the bar!

     The next week I went to the doctor I had been seeing since I was about seven years old. Here I was, a healthy adult, that maybe saw him once or twice a decade (except for right after I had Alex and he helped diagnose my deep vein thrombosis that went from my bellybutton to my knee!) and I was seeing for something scary again! After an MRI, he reported that it looked like it could be MS, but he wanted me to see a neurologist for a second opinion. The neurologist wanted to be sure it was MS since it is often misdiagnosed, so he sent me in for a cervical spine MRI, and then a spinal tap. At my follow up appointment, I got his nurse practitioner, who walked in the door with a pile of medication brochures and announced that, “Yep, it is MS! Take a look through this information and then come back to discuss it with us once you’ve decided what medication you think looks interesting.” Really?? You’re confirming a life changing diagnosis and not even having the doctor tell me or talk to me about my future with this disease? I wasn’t happy about this, to say the least, so I started looking around for a different neurologist. A friend referred me to an incredible neurologist who heads up the MS clinic in Denver, and I have been seeing Dr. Corboy ever since! He is on the cutting edge of research and technology for MS which still does not have a cure. I pray in my lifetime we will see one!

     It is hard to believe that it has been four years since I met MS. She will not get me and I will continue to fight her with all of the knowledge and strength that I have!

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WHAT IS MULTIPLE SCLEROSIS?

Multiple sclerosis (MS) involves an immune-mediated process in which an abnormal response of the body’s immune system is directed against the central nervous system (CNS), which is made up of the brain, spinal cord and optic nerves. The exact antigen — or target that the immune cells are sensitized to attack — remains unknown, which is why MS is considered by many experts to be “immune-mediated” rather than “autoimmune.”

  • Within the CNS, the immune system attacks myelin — the fatty substance that surrounds and insulates the nerve fibers — as well as the nerve fibers themselves.
  • The damaged myelin forms scar tissue (sclerosis), which gives the disease its name.
  • When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing a wide variety of symptoms.
  • The disease is thought to be triggered in a genetically susceptible individual by a combination of one or more environmental factors.
  • People with MS typically experience one of four disease courses, which can be mild, moderate or severe.

 

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