You know those times in your life when TIME seems to slow down or stop, as the world keeps turning for those around you? It's kind of surreal and unnerving, but typically a time of deep reflection.
I've had some moments like that in my life and this was one of those times!
I hobbled into my neurologist's office holding onto my mom's shoulder and trying to keep up with my baby girl running ahead. After ten minutes, the warmth of the office got to me. I couldn't hold the magazine for my lil one to look at, the room was spinning, my nausea, burning head, pain, darker vision, and intestinal woes started creeping in. My mom fanned me with a magazine as my baby girl tried running through open doors and talked to those around us. Anytime the temperature climbs above 71, these days, I get sick, weak, and have all kinds of issues. Ain't no thang! It's just my thang'
Eventually we were called back and my neurologist did all of the MS-y strength/feeling tests. It was obvious that my right side now had issues. When he did the pin prick on my back, I realized just how little feeling I had at certain points. Since pregnancy, I noticed a general decrease in feeling and an increase in pain that hasn't improved. It sounds contradictory, but when your central nervous system is fighting itself, weird things happen. Of all 5 senses, I don't have full function of any of them.
Smell: Born without a real sense of smell; never smelled dirt, rain, flowers, etc.
Taste: Once ate several bites of 4 yr old, rancid peanut butter before realizing it was bad. I check all of the dates now. Tied to smell, so obviously I don't taste things like most people.
Vision: Shadows in my eyes, comes and goes depending on heat or stress
Hearing: Ringing in my ears, comes and goes with heat or stress
Touch: Right side at certain points I can't feel or have less sensitivity
But, I can see ENOUGH, hear ENOUGH, smell ENOUGH, taste ENOUGH, and feel ENOUGH. So, it was surprising how bad I'd gotten, but still not horrible.
I could deal with it all, I figured, because that is what I've done for almost 2 decades. My neurologist explained that I had a new lesion on my spine affecting my right side and would need to start high dose steroids immediately. He explained that I would need to be admitted to the hospital for monitoring because the meds are so intense and it would be my first time on them. I knew it was risky, since my body is hypersensitive to anything foreign, but explained that we couldn't afford it. I would be fine doing it at home. My neuro was shocked by my nonchalant attitude and reiterated that I should go to the hospital. "This is nothing like the steroids you've taken before." As he went over some of the side effects, I kept thinking, "It's fine. I've done hard things. I've got my husband, mom, and God."
*Weight gain {I gained 90 pounds in less than a year. Almost every winter for the past 15-16 years, I've had to do several rounds of antibiotics and steroids. I gain, I know}
*Acne/Skin issues {Since being pregnant, I've had cracked, bleeding skin that wouldn't heal until I did herbalife after 2 years of issues. It'll pass}
*Insomnia {When doing my Master's, because of meds, I went 7 days with no sleep. I survived that}.
*Intestinal issues {When I started to die, my intestines were the first to stop working. For months I couldn't stand for more than 2 minutes without nearly fainting or vomiting. I worked, twitching and shaking on the ground and then collapsed and worked on my couch. It can't be worse than that}.
*Pain {Stabbing pains and vomiting while I did my Master's program and student teaching. I told the surgeon I had to wait to take out my gall bladder because I didn't have time. I was sick a lot and had some rough times. But, I was able to graduate with a 4.0 and God helped me through it all. Or when I was in labor for SIX days because my doctor thought I had a kidney stone instead of being in labor. I taught for 1 1/2 days while in labor and after having my baby, nurses kept coming in to say, "You're THAT patient? Wow!" Or when I had started to die and had horrible pain accompanied with wretched bruising. When my doctor saw my lower back, he said, "Who hurt you?" I told him no one had hurt me. He insisted, "You can tell me. Who is hurting you?" -NO one. "No one has touched you?" I explained that a roommate had given me a massage because I was hurting. He laughed and said, "YEAH! It looks like someone took a bat to your back. You can't get that from a massage." I felt like someone had taken a bat to my back and later learned I was close to death or a coma. But, I survived that}.
*High anxiety, depression and/or panic attacks {Never had panic attacks, but I had high anxiety when I worked with the abused and neglected kids, did my job and my boss's job, bled for 5 1/2 months straight, and had 3 friends die within 6 months -2 from suicide. I dreamed of death, thought of death, and my hormones were all over the place. Eventually it leveled out. I've dealt with depression for as long as I can remember. Or when I was teaching my first year, my body rejected the MS injections, and they were letting go of nearly all the new teachers. It worked out, because I had my mom and God. The kids tested high, loved school, and I was given a full contract (off at-will, which is usually done after the 3rd year of teaching)}.
*Hallucinations {Um, no. ...my eyes widened and I thought...I don't think I can deal with that. He told my mom that the onset of hallucinations, for one, would be a good time to call 911}.
My mom turned to me and said, "Then you'll have to REALLY tell me how you're doing, so I know." I typically don't let anyone know just how bad things are for me physically. When I was 19, I thought I was going blind and deaf. I learned to turn in the direction of where people were talking and fake like I could see them. When I had stabbing pains, I learned to slow down, breathe, rest against something, and eventually learned that exercise was what was doing me in (vision, hearing, stabbing, bruising, etc). When I'm stiff and can't walk well, I take it slow and use what is around me. But, she was right. For years, very few people even knew I had MS. Then when people knew, I told the tip of the iceberg of my issues. This was going to be an iceberg of huge proportions and I didn't know what to expect. The fear in her eyes, the doctor's eyes, and the nurse's eyes shook me a little.
He again reiterated that I should be admitted to the hospital and I said I'd be okay. They called in the meds and the pharmacy called them back. They didn't believe that the dose was correct. When my husband went to pick up the prescription, they said they had NEVER given this much to one patient. We took all they had and had to go back the following day to get another 100 pills.
I had to go to the lab to confirm that I didn't have a bladder infection. I needed a wheelchair and sat by myself for a time. I had a little too much time on my hand to think through everything. Time slowed down.
Then things got hard. Incredible, excruciating pain behind my right eye, right arm, right hand, stomach and legs. Walking a few feet would make me shake and twitch for 1-3 hours. I felt like I was being tazed in my neck and head. I couldn't speak well (stuttering, slurring words, hard to think of the right word) and scared me. I started to pass out in the hall. I lay in bed reading until my vision got so bad I couldn't even read. I couldn't write. I couldn't hold up anything. Noise was too much for me. Fevers (when Mike and Mom helped me they commented on how hot my body was because of the meds). Chills. Insomnia. Depression. Anxiety. Gained 12 pounds in 5 days. Nausea. Hearing came and went. I was feeling trapped and lost with little purpose and a whole lot of uncertainty.
If I go blind in the future...okay.
If I can't walk and need a wheelchair...okay.
If I lose my hearing...okay.
But not having my cognitive abilities really shook me.
In the first few days, I was able to read, "Unbroken," a true story of a WWII POW who survived a tremendous amount of trials. I almost quit a few times because the things Louis Zamperini endured were horrific. At one point I looked into the author and found that she had Chronic Fatigue Syndrome (VERY similar to MS). She spent 6 of 14 years bedridden and sacrificed her health to finish her New York Times Best Seller book (only 4 fiction books have been on the list longer). She also wrote, "Seabiscuit," which was later made into a movie, and has a charity. I continued and was incredibly inspired by both the POW(s) and the author. A theme stuck out to me...Satan had the heart of 'The Bird,' who tortured Zamperini. He tore him down physically and emotionally. But, Louis conquered and eventually forgave the wretched man. I was feeling trapped, broken, and torn down, but my trials paled in comparison. It struck me that Satan, who was eternally punished and will never have a body, tries to get us to tear down our bodies or hate them. But, the things our bodies can endure and the blessing they are to us...maybe I don't fully appreciate it. I also read Stephanie Nielson's book, "Heaven is Here: An Incredible Story of Hope, Triumph, and Everyday Joy." I'd seen her
video before and loved her statement, "I am not my body." In her book she talked about while she was in her coma, that she had a choice. She could stay on the other side or return to earth. It would be difficult, but she chose to return to earth. She talked about how she really missed her body.
As I lay in bed, not able to do much more than pray and think, I came to the realization that all the years I've hated my body needed to end. The hatred, shame, obsession or pre-occupation with a certain number on the scale was Satan's ploy. In the pre-mortal realm, there was a war spiritually with a reward of bodies to the winning team (among other blessings). In this mortal realm, there is a war physically and spiritually, with the biggest enemy and bully trying to convince us again. I decided to appreciate my body and to stop hating it. There is essentially a war raging inside my own body as my own tissues are constantly attacking themselves. But, I decided to stop allowing Satan, who has REAL jealousy of even my broken body, to convince me to be jealous of another body. This is the one God gave me and I have COMPLETE trust that every single thing in my life is for my good; to bring me to God and Christ.
We were reading scriptures one night and read about how worshiping once a week isn't enough. After conversations, I realized that I think of God a LOT and one reason is because of my MS. To me, it seems impossible to have MS and not pray your way through it. Everyone has their 'thing' and it is mine. Because of that, I'm blessed. If things get HORRIBLE physically, I can still do good things. The whole ordeal taught me much and connected me closer to Christ. I may not be able to do what I could 16 years ago or even 16 months ago, but I AM BLESSED. I will never say that I am grateful for MS (or my other diseases), but I am grateful for the lessons I'm learning. I felt the prayers of others and knew that God is very aware of me. Christ knows exactly how I feel and for that, I'm eternally grateful to Him. God is good.
When I was struggling, losing weight was the LEAST of my worries. Through all of this experience, I decided to change my approach. A few months before this, I had been thinking that every trial I encounter has some blessing and started looking for the blessings. Now I really believe it and appreciate it. So, I've renamed my blog and will focus instead on balance. Physical, Emotional and Spiritual.
I am blessed. And so are you. =)
