Since my Tecfidera experience is going seemingly well, I really do not have much of anything to say about it.
So, how 'bout a chapter from my newest writing venture?
I am currently working on a common sense guide for living with the MonSter.
Chapter: Water Works
A friend of mine used this word once in describing strange physical symptoms she was experiencing. Due to her habitual hypochondriac tendencies, as well as the fact that the word was alien to my vocabulary, I really didn’t think much of it at the time. I just nodded in requisite acknowledgment and let her continue to vent.
When the word popped up again during D-Day (Diagnosis Day), my mind raced to recall the first time I had ever heard it. I immediately cringed in sympathy for anyone who experienced such a degrading, animistic situation.
And, then, I realized that I HAD experienced incontinence; but I had associated it with a probable urinary tract infection for which I was prone. Wow, two red flags all at once; but I didn’t know how closely these situations were related or what they had in common.
Incontinence is one of the biggest problems I have with my disease. It is not uncommon for me to not quite make it to the toilet in time or even know that I need to go in time to even think about searching for said toilet.
In the beginning, and even now, I am not comfortable in strange settings if I haven't located the ladies' room and have developed an acceptable escape route just in case. There are particular places that I
refuse to visit because I know without a doubt that disaster lurks.
Pre-diagnosis I can remember sitting in traffic and feeling my bladder totally empty onto the plush black upholstery of my snazzy l’il sports car. It was a warm day. I had driven several miles aware of a need to relieve myself but confident I could and would make it to the next fast food rest room, located right up the road. That’s when the traffic lights failed me and progress toward those Golden Arches visible in the near distance stopped. Thank goodness I was alone, with no witnesses. (That has not always been the case.)
I hated to soil my car but at least this hadn’t happened in someone else’s vehicle! (Eww...) I could clean this up with no one the wiser, even if the chore took precedence over my evening plans of driving to a friend’s house. (Double eww...I didn't relish the idea of plopping myself back down in my own pee.) And right now I needed to get home and clean myself up. Sitting in my own puddle was not a pleasant sensation.
Afterward I remember laughing at myself as if I had committed a secret blunder to lock away in my private memory vault.
But then it happened again…and again…and again…
Once at a deli…once in the hallway at school…no, twice…no, three times at school…once on my back porch as I fumbled for the house key…again in my kitchen after miscalculating the number of steps it would take to reach the bathroom…a couple of times in bed…when I stood up at my desk…
You get the picture.
What horrid fuel for an already accelerated anxiety level. I never knew when it would happen and I began avoiding consumption of liquids to the point of near hydration. The muscles that controlled that physical act of waiting no longer obeyed my command. I envisioned a medical bag attached to my side or packages of adult diapers stacked in my linen closet. (Actually, just figured it was another one of those irritating bladder infections and substituted the Depends for cases of -yuck- cranberry juice.)
My gynecologist suggested practicing Kegle exercises daily. My mother told me to wear Depends (That figures!). My urologist prescribed an assortment of medicines and with each failed prescription changed it to another. My neurologist just told me I would have to live with it. This was all after D-Day, so you can only imagine the assistance I received without a definitive medical condition.
I admit that I really didn’t do much (any) research on my situation after diagnosis. It was what it was; and it remains thus. Boy, oh, boy, have I learned to lean on myself since then. If I want to know, I need to Google it! Since my diagnosis, my life has taken a new direction. I still teach full-time; I am a mother and a wife; I enjoy my hobbies of reading, writing, and crocheting; I attend church and play in the bell choir; but I do not go out of my way to look for additional responsibilities. I enjoy my home, my books, and my teaching. And I head for the lavoratory at the first sensation, no matter how small.
I'm sure there is a pill out there with my name on it that would alleviate this problem, but I am also certain that pill would only lead another problem that required prescription treatment; so, I will pass and once again take matters into my own hands. I do that a lot, but recently I agreed to allow my neurologist to participate in my treatment.
Several months ago he decided that I needed to be on something. Upon diagnosis the acceptable drug treatment had been Beta Seron, Avonex, or Copaxen; so I self-injected my Beta Seron religiously every 48 hours. Once I acquired the “needle pen”, as my son called it, injection was only a matter of loading the medicine and needle and aiming it at the assigned body part location. It wasn't all that fun but usually not too painful. The resulting bruises and irritated red spots were not at all attractive and the inconvenience of it all were unpleasant, but this was what Dr. Bob prescribed and at that time he was my Savior and my Hero. So, when he gave me literature for Tecfidera, I studied and prayed until electing to begin treatment over my Christmas vacation from school. I didn't suffer many side effects from Beta Seron, but needed time to adjust to this new invasion upon my system. That was a very good idea considering my initial reaction to Tecfidera. I also needed time to journal about this new period in my MS journey.