Multiple Sclerosis Centers of Excellence
Kevin Byrne: Welcome back, my friend!
I can’t explain it, but there was just a subtle hint that something’s just not quite right. That’s the way my MS fights. The issues first appear as some annoyance that you shrug off as being tired, not paying attention to stuff, or maybe having one too many the night before. Those new issues are just accepted; not even focused on or thought about. Hell, if I focused or got worried every time I had an “issue” I wouldn’t get out of bed in the morning! With MS, issues are normal; sometimes it is difficult to realize that some of those issues are new. MS is sneaky and its resurgence can be slow.
For me, it took over a month this time. I had recently finished BikeMS. That pushed my body and my mind hard. It was a great event that I prepared for months before, and expected a bit of recovery on the back end. So numbness and tingling are just part of the package for me. It has been that way since 1999, so just a little bit more is no big deal.
There’s that point in every MS episode when the reality of what is happening settles in. It took 5 weeks for me to experience that point. While preparing for my regular 3-month appointment last week, I reviewed with Brie.
“I need to talk to Mary (my NP) about this new numbness in my hand”
“Be sure to tell her about your slurring.”
“I’m slurring again?”
Crap. All at once everything comes together in that moment of clarity where all my issues become a pattern. I realize just how bad my “normal” has become again.
At that point, it’s as if my MS realizes the jig is up and subtly goes out the window. Welcome back my old friend! Now you are moving fast and I am scared.
When I was first diagnosed with my I didn’t fear MS attacks. The fact that I didn’t know what MS was at the time sure helped me avoid any confrontation. I got sick and I had issues; that’s enough explanation that an Air Cavalry commander needs to know before he focuses on the important issue: “Now what?” “Now what?” was my priority and focus: treatment, recovery, moving forward? My MS issues continued so my Army career was over. That just extended the “now what?” for a while. Moving forward, transitioning, and settling in to my new life.
MS stopped my Army career and turned my world upside down. But I didn’t “have MS.” I didn’t deal with the relapsing-remitting issues that sick people had to deal with; in fact, I visited with a neurologist one time in the private sector who even suggested that I had a mono-symptomatic neurological disorder and not MS. One big issue that I would deal with for the rest of my life, but that’s it. I asked if I should stop taking these drugs that the VA had me on. Quickly backtracking with a definitive “no”, he explained that there is no surety either way; so best to play it safe and take the medication as if I do have MS to treat. OK.
When I had my first exacerbation I still didn’t fear MS attacks. It was easy since I didn’t know I had an MS attack. My eyes were getting bad and I needed glasses (or so I thought). The funny part about that one was that when my eyes improved in a few months I thought they were getting worse because the glasses weren’t working anymore. I just stopped wearing them after a while and dealt with my new normal.
In 2005 I called my then-girlfriend, Brie, up and told her that I was going to the VA hospital. I couldn’t see from one eye. After a long day of tests, my neurologist and ophthalmologist broke the 6-year old news that everyone already knew: I had MS. “So that’s what an exacerbation is?” was my reaction. They still didn’t scare me, but know I formally met an MS attack.
The fun part about my MS is that the exacerbations are usually quiet and subtle. It’s everything else that takes center stage: balance, falling, broken bones, muscle infections, surgeries, anaphylactic shock are just some of the great times from dealing with what my MS has already done to me, and my attempts to treat it.
Three years ago, I first learned to fear the relapse. My eyes again. Subtle changes from that new normal slowly crept in until I made the connection. I didn’t like that one bit. Again, my friends at the VA took great care of me and I recovered most of my vision. This time, though, the damage was done mentally. I was afraid of the next exacerbation: when would it come and how bad would it affect my eyes this time?
Since then, progression of my MS has gone into hibernation. MS waited until I let my guard down a bit. After a year of MS-related illnesses, surgeries and other ailments I grew weary of looking for more issues. Besides, my eyes are great. It was that slow, sneaky progression that I didn’t see coming.
You know, my boasting of being an old Air Cav guy loses its value when I keep missing the enemy staring me in the face!
This time it’s not my eyes, but instead my issues are my arm, my slurring, my drooling and my bladder. For the first time in our 13-year dance I am afraid of what is going on right now and how bad this is going to get. This is going to be a fun week…
It’s 3AM. I have an MRI tonight at 7PM. This could be the longest day of my life. Welcome back, my friend!
Today may have indeed proven to be the longest day. A full day at work that seemed to drag out like day after day after another long day. Running to the bathroom to empty an emptied bladder didn’t help my stress. Everything stings, hurts, or has to pee. My saving grace was being able to spend a little time with Brie and Eleanor before heading off to my MRI!
MS even managed to ruin Spa Day. MRIs are a lot less relaxing with the stress of ongoing MS issues and the mind that likes to role play every bad outcome. On top of that, I missed out on the VA MRI. Due to the expedited need, I was sent to the medical school, OHSU, next door. Alas, the rhythmic chiming of the machine eventually worked its magic and soothed my mind and body.
In the effort to maintain a sense of normalcy I will go to bed, wake up after a (hopefully) full night’s sleep, bring my daughter to daycare, go to work, and do it all again. At some point I hope to hear the news of what’s next. Until then, I will live my life like I always do. Why? Because I can and because I need to. Not today, my friend!
The wait can be the worst past. I know there is a problem; Mary knows there is a problem. Until we know what the problem is, throwing drugs at it is like blowing out a candle with a fire hose. I understand the damage treatments can do to my body, and the need to limit them, but I’m sure that everyone fighting MS has made the statement “just give me something to make this stop!” at least once…
I slept for 9 hours and woke up exhausted. My left hand and arm hurts (just like the right one always does); my throat and face hurt; I’m slurring, drooling and running to the bathroom hourly with an out-of-nowhere need to pee, though little is there. What can I do right now? Just hold it together and try to focus on what matters: my family and my life. I try to maintain a sense of normalcy, keeping my issues quiet and trying to go about my regular day without impact or “reactions of pity”. Without knowing the background story, three coworkers yesterday told me (in a professional way) that I looked like hell today. Great.
One of my biggest fears about MS is how it will affect my career and my ability to provide for my family. I’m a proud man; some may say cocky, arrogant, and aggressive. I don’t mind those classifications. The Army (West Point, Attack Aviation, Air Cavalry) took me in, groomed my natural need to succeed, and fostered that into the personal motivation that still drives me today. It’s hard to be a successful professional, manage a team, and advance your career if you come to the office with a litany of physical issues and grow and change constantly. I understand and am familiar with ADA (Americans with Disabilities Act) but I also understand subtle impressions and stereotypes. I hate the fact that the impression of ability can be impacted by disabilities. I hate it but I understand it; I am guilty of it myself as times. Maybe I am wrong and maybe I am naïve but my fear of its unknown reaction leads me to keeping my issues quiet as much as I can. I just quietly wait for my test results. Masking my issues and worries from most, my fears continue to simmer.
Show yourself, my friend!
Some initial reports back. I do have a bladder infection (yeah!); my MRI shows activity but the full comparison to my November scan is not complete. The specific infection is still pending some culture tests later today.
Wow! Relieved to have a bladder infection! I guess that an infection and not further MS damage is better of the two crappy options. Another side effect of my medication. I’m fighting back, my friend!
Some progress, albeit not much. I do have a bladder infection, and they have started me on Amoxicillin. What is causing the infection is not known yet. Is it just due to a weakened immune system from my MS medication? Is it due to an exacerbation causing more harm? We won’t know until I get the report from my MRI. The ‘expedited today’ MRI reading isn’t here yet. I could go on about efficiencies and the pain of waiting even an additional second, but tonight is my day to make dinner; Brie is picking up Eleanor and I don’t want to miss out on one bit! Besides, I have started on more drugs. Throw another prescription at the problem. What else can I ask for (he says sarcastically)…
I have more important stuff to do right now, my friend!
I put my MS aside last night. Everyone fighting this disease, everyone fighting any debilitation, needs those days when they put their woes aside; even if it is only for a moment. It is the glue needed to hold my emotions and my mental clarity together. The simple life last night was exactly what I needed. Grilling burgers on the back deck for dinner with Brie and Eleanor; sitting together as a family and enjoying dinner (as much as you can with a feisty 2½ year old); the Daddy duties of bathing that unwilling participant; finally, after Ellie’s bedtime, sitting alone with my wife. Just decompressing from the day, enjoying some wine, talking about our day, watching a little TV, and spending time together. No agenda, just together. My MS fades for a while on nights like this.
I appreciate the respite from MS but I know it’s only temporary. MS made a sharp visit and reminder at 3AM: My arm. Throbbing, aching, and fatigued. It’s like I am trying to hold my arm over a campfire with a 50-pound weight hanging off of it. The concept “pain is relative” is the most accurate statement I can make in this case. My right arm has felt like this since 1999. Most of the time I barely notice it anymore; I am used to it. If I am asked the question “does it hurt?” my answer is typically no. But if I stop and think about it, think about the pain in my arm, the pain is horrific. The mind stops gauging the pain if there is no way to make it stop. Anyone who understands physical therapy will tell you that the only reason to feel pain is to make you stop doing or heal whatever it is that’s damaging your body. It you can’t fix it, no need to feel it. My right arm figured that out years ago. My left is just out of the starting gate. He still is looking to heal. I hope he does.
Hopefully some answers will come today. Show yourself, my friend!
All my results are back. Great news...and some of the worst news I could hope for. This latest round is not something new. My MRI lesions are completely stable: that’s awesome! The bad part is that the infection is a normal reaction to my medicine. It is apparently my new normal and probably will happen again. The impact on my arm and face muscles are inflammations of prior lesions, harried by the infection. That again is my new normal and probably will reoccur. The answer for now is yet another prescription to pick up. Great.
Just one more reason to fear my MS. You sneaky bastard! What else could you possibly have in store for me, my friend?
Try all you might but you won’t win, my friend………
So I finished 2 weeks living my greatest fears and challenges. The result is both good and bad: good for the immediate resolution but bad for the new normal in my future. We’ll call this one a draw, my friend. I went into the weekend with new challenges and new fears. Instead of bowing to those fears these days were the best bits of life anyone could hope to experience, sick or healthy:
• Enjoying my family and future with little Eleanor, dancing together around the living room without a care in the world.
• Celebrating life with the marriage of wonderful friends. Congratulations Joe and Chelsea!
• Affirming my faith through church service; a day made better by the opportunity to bring Monte for the blessing of the animals in honor of St. Francis of Assisi.
• Cheering on my Yankees as this win Game #1 of the postseason. You can take this boy from the Bronx, but you can’t take the Bronx from this boy!
• With every celebration, with every moment both public and intimate, is Brie. My life…My Love…
I live by a new set of rules now. I don’t know what the next round will bring. If the future is anything like the first two and a half days of this new ‘normal’ have been, I already have what I need to fight.
I will always win…
Please visit Kevin’s website at www.brieandkevin.com
Date posted: October 2012