4. You found me

Living in Waldorf was a positive experience for my personal growth and my physical healing. I was struggling alone with MS symptoms at the time, and I was not on any medication. My left hand was weak and becoming more numb everyday. I reached the point where I could no longer tie my shoes or do my hair or type. My walking was stable although my left ankle was in a perpetual gangster lean. I didn’t have the balance issues and muscle weakness that I have now, but I found myself asking, why are you leaning?

During that time, I found a book titled https://www.amazon.in/Know-Yourself-Essential-Teachings-Satchidananda/dp/0932040349.

Copaxone was the last medication I was on and I still had some remaining shots I could use. So one night, before I went to bed I took a shot and went to sleep. My scalp started itching as soon as I laid down. Thinking it was nothing, I gave it a little scratch then I immediately felt more itching in other parts of my scalp then it was up and down my arms and legs. Oh no! I felt like I was having a reaction to the medicine. I jumped up and went to look in the mirror. My face has hives all over it and they were on my arms and legs I didn’t know what to do, but I had a little Benadryl on hand for my daughter’s allergies. I took a spoonful and the itching started to subside. Then I took another spoon and the hives started to fade as well. Speaking to my neurologist the next day, he explained that this was an allergic reaction, and I could no longer use Copaxone. No matter, a shot a day would not be missed.

Beta Seron was the next DMD on deck. Unfortunately, I was allergic to that one as well. It caused shortness of breath every time I took it. The shortness of breath would start minutes after I took the shot and it would always go away within 30 minutes, but it was extremely  uncomfortable and scary to not be able to catch my breath for thirty minutes. Then I found out through personal research that black seed oil was an interferon (just like beta seron). Great! I can use black seed oil to replace beta seron so I won’t lose my breath. So I headed to the nearest health food store and there it was — black seed oil. Wonderful. I head home to try it before I run my next errand. By the time I got back in my car the familiar tightness in my chest started to surface. I’m thinking Oh no! This does have the same active ingredient as Beta Seron. And it’s making me have shortness of breath too! Oh no! So I tried the black seed oil one more time after that and the same result occurred. Oh well, I’m allergic. I shared this with my neurologist.

Rebif was next. It was another shot, but it was three times a week not every day. So I got four days off. Little did I know that those four days I would spend in pure anxiety/terror awaiting the next shot. Because the shots were painful you see. Also during the immediate night of and day after the shot I would feel like I had the flu. I neve actually had the flu, but I was told that is how it feels. I took this medicine for several years and I never got used to it. On my own with no issues except fear. I was afraid of the shot. Unlike Copaxone and Beta Seron this shot actually would sting as it went through my body. Ouch! Every. Single. Time. I grew afraid of the needle and changed the days over and over again. First it was Sunday, Tuesday, Thursday so I could avoid Friday and Saturday. A friend recently told me his daughter had to administer shots to her son, and it was difficult so she had a glass of wine after each shot. (I wish I thought of that while I was on Rebif.) But eventually I just started skipping shots more and more, I even brought the shots to work to do it there. Nothing worked by the way. I was still scared. I was still anxious. BUT looking back, I had no relapses in four years! I walked freely. I flew on a plane by myself. This stuff works. The medicine was working.

If you find yourself wanting to quit your medicine because it’s inconvenient, then take an inventory and talk to your physician to determine if you are doing well and is that medicine working. And if it is working then start to pray, fast, drink wine afterwards, join a monastery do whatever you can to Stay. On. Your. Therapy. But that got me thinking, how do I find a treatment that works AND will be easy to stay on?

I do not own the rights to this music.

https://www.youtube.com/watch?v=jFg_8u87zT0

2. Decisions

Do not be afraid. Stand firm and you will see the deliverance the Lord will bring you today…The Lord will fight for you; you need only to be still.” -Exodus 14:13-14  

Father, thank you for always hearing me.

After being diagnosed with multiple sclerosis, I immediately recalled my original plan should the MS screening results turn out to be out of my favor. I was to leave my job and return to Connecticut with my toddler. Welp, needless to say, that never happened, but maybe it should have.  I made the decision to stay at my job with the Library of Congress in Washington D.C., and it was a good decision because I had full time benefits. With MS on board, I would need the best options for health care for me and my daughter. In Connecticut, there was no guarantee of work or health benefits. That said, to this day, I still mull over that decision. Maybe I would have been better off being near my parents. Maybe I would have more options for child care and health care assistance. I did try to go back, but it didn’t work. I’ll come back to that later.

Over the week following my diagnosis (dx), I knew my neurologist was anxious to get me started on a disease modifying drug (DMD). But FIRST he wanted me to sign me up for a three day course of Solumedrol steroids to treat my current symptoms that were slowing me down, giving me foot drop, causing heavy legs, and whatever was making me feel itchy under my skin.

Following the steroid prescription, I had nurses and medication deliveries coming to my home and several phone conversations with the neurologist and his office staff. It was very overwhelming dealing with the doctor’s office. I had to learn how to get medicine in a brand new way. It was more than a trip to the pharmacy. I was entering the mysterious, but surprisingly efficient world of specialty pharmacies and mail order medication. At the time of this writing, almost nine years later, I feel like an old pro at receiving specialty medication. It all makes sense to me now. It is very efficient, as noted above. 

Back to my Connecticut move, three months after my diagnosis, I found a perfect job opening for a Document Analyst at the U.S. Bankruptcy Court in Hartford, CT. Yes, that’s U.S., and yes that’s federal, which meant benefits! Yay! My mom would be pleased. Since  would be working with the same “company” I was working for in DC, I decided to pursue it, but it did not pan out. I went all the way to Hartford to interview, but I did not get the job. Even sitting here today, I still feel regretful that I did not get that job. So back to Maryland I go, with my tail between my legs. Heading back to the place I said I would leave if I got this diagnosis, but now it was time for me to figure out a new plan, a new direction for me and my daughter.

Little did I know, I was pregnant actually. Lord help.

More decisions at my feet. Ultimately, I chose to keep the baby, but there were other plans for her as well. When her father and I went to get a sonogram, we were so excited, but it turned out to be a heartbreaking experience for both of us. The doctors found an encephalocele at the base of her brain, which basically means her brain and spinal cord never joined and were growing outside of her body. I received many opinions about keeping the baby regardless of the defect. Her father and his family were not as encouraging. They felt that her life would be too painful for her and everyone involved. My family was the same. One sister pointed out an online parenting group for families making this decision. The most memorable opinion came from a close friend. She suggested it was from the medicine I was taking for MS. She said, and I paraphrase, anytime you put a foreign substance in your body while “preggerz” you run a risk of something going wrong with the baby. Yes, this is true, but through further research, I learned that it was not only what I was putting inside my body (Rx’d DMD), but also what I was removing from my body (folic acid). More specifically, it was a shortage of folic acid. MS absorbs folic acid from your system and on top of that I was not taking enough vitamins, which made it even worse for the baby. So if I fast forward to the end, she did not make it. So that was a result of an equally weak choice in judgement and an unstable personal relationship.

Getting back to my attempt to return to Connecticut, The job I was going after was picked up by an employee who was coming out of retirement to re-enter the workforce. Needless to say, I was highly disappointed when I was informed. Had the position been available, I think I would get it. My decision to stay in Maryland was good. After this happened, I began a new motto to hold my position and do not make any sudden moves. I had to believe that everything happening to me was part of a bigger picture and I had to live through it. 

There were a lot of discouraging moments in that experience, but I felt thankful for where I stood at the time, and I was led to remain very still while things unfolded for me.  It felt like things were not working out, but I knew eventually the discouragement would turn into success.  I knew that eventually my health and my financial well-being would be secure. So if discouragement eventually leads to success, then that has me thinking, how many failures equal a success? In other words, how many times do I have to fail?

Father, thank you for always hearing me.

1. Begin at the beginning

“Begin at the beginning, and go on till you reach the end, then stop.” -Lewis Carroll

I do not own the rights to this music.

This is a story of my experience living with multiple sclerosis from my diagnosis up until this very moment. As of this writing (August 2017), it has been seven years since my diagnosis, so the story is long with twists and turns and precarious balance like the title of this blog. I am also a single mom of a tween age girl who just started middle school. My story includes my tween, but I will note on occasion when she is a bit younger (i.e. toddler, preschooler, and eventually middle school age), which is where we are today. So now that you have a little background on me, let’s get started on the story of my life with multiple sclerosis.

It all began in August 2010, the day my life would change forever. I was on my way out to the club for drinks and dancing with my boyfriend at the time. While I was getting ready, I became extremely tired and my left leg felt unusually heavy. I was so excited to hang out that night, and my sister had agreed to babysit my then two-year-old daughter. So I had to push through what I thought was only a little fatigue. Before I knew it, my left leg was going numb, I was dragging it from room to room around the house, and it felt like it weighed a ton! My left foot and leg would continue to be numb (and heavy!) for the next seven years, and counting.

I made it to the club, which my friend usually attended without me, due to my lack of having a sitter. But it turned out to be just as fun as he always made it seem. I walked through the doors with my four-inch heels that it would be my last time wearing. Then we walked across the floor, got drinks, and we even took pictures, which turned out gorgeous. About an hour after we arrived and got settled, the numb feeling and muscle fatigue began to spread in my left leg. I was thinking, oh no! How can this STILL be happening?? The one and only night when I have a babysitter? I can only last one hour in the place? BUMMER! I had to leave. That would be the first of many missed events and broken engagements due to the effects of Multiple Sclerosis (MS), I would later find out. I left and went home stil uncetain of what was happening.

About a week later, I checked into the Emergency Room (ER) at the University of Maryland Medical Center in Baltimore, MD. That entire week my leg continued to go numb and it remained fatigued for several days. I never thought multiple sclerosis was the issue until after I went to the ER. The ER doctor examined me and listened to me describe my symptoms of numbness and “itching under my skin” then I was discharged with instructions to get screened for Multiple Sclerosis (MS)! What?!? I was floored! I decided at that point, if I had MS, I would just have to give up on my current family and career pursuits and move back home to Connecticut, but I will say more about that later. I found a neurologist right there at the hospital, but the next available appointment was a month away! That was the first of many times that I would learn patience from MS and the medical process.

The neurologist assessed my situation and I explained once again that I have “itching under my skin” but my bigger concern was the numbness and weakness in my left leg and foot. Looking back, I now realize that I was tired and needed to rest. I was burned out. My left foot had what I now know as foot drop. I was literally dragging it around. The neurologist explained, the available medications. He prescribed a three-day course of steroids to address my symptoms. I now see the three-day treatment as an emergency medication to relieve the current symptoms. (Since then I have also had a five-day course of steroids.) I started to feel better by the third day. The “itching” went away and the dragging ended. However, my feet and hands remained numb and weak whenever I was overdoing it. The neurologist explained that the MS screening process also entailed another visit to the hospital for an MRI.

I would eventually develop an on-again-off-again, love-hate relationship with the MRI procedure. The hospital ordered an MRI of my brain and spine to identify any activity indicative of multiple sclerosis. So I booked an appointment and had this powerful machine examine my brain and spine. The MRI doctor asked if I wanted headphones and what type of music I like. I said sure. What I did not realize was how LOUD the MRI machine would be. I did have a few breaks of quiet here and there, where I could actually hear music, but a majority of the time I heard a loud banging and clanking and whistling sound all around me. I have learned since then that the MRI is a miracle procedure and a blessing for what it’s able to reveal. When the MRI results came back, my primary care doctor delivered the news. She explained that my MRI showed lesions on my brain and spine, which were indicative of MS activity. She stressed the importance of exercise, diet, and keeping a strong support network. I didn’t anticipate any issues with the exercise and diet, but the support network was something I could not guarantee, and she was concerned.

That got me thinking, just how important is it to have a reliable support network for MS or any other health matter? Or for life in general?