All of our numbers are base 10, and evidently my perspective is too. There are just times when 10 seems a world bigger than 9. I never feel like I am sick and take a lot of medicine. I know my MS meds cost a lot, but I never think of myself as taking a lot of drugs every day. My system is simple. Only one bottle moves to tell me the last pill I took, and I chuckle every time the nurse asks if I miss doses. No, I don’t forget doses. The pain is a good reminder system. See? It is simple, so I can not be that sick, right?
Then this week, I started a new medication which pushed my daily count to 10. I never count pills taken for unusually high levels of pain because I rarely take them, and it kept the daily med count to the single digits. I find it humorous I should have such a hang-up about the 10th pill. I thought my hang-up would be over it being an anti-depressant, but my self image is more at odds with the 10th pill than depression. I don’t feel sad or melancholy, at least not beyond reason for what life throws.
Don’t get me wrong. I still take all 10 pills. How could I not take them and still look A in the eye when I tell her she has to take her meds. She takes 15, and it’s not like that is the highest number she has had to take per day. I continue to use my kids as role models even if traditionally it is the other way around. None the less, I still cringe as the new drug plays havoc with my stomach while I get used to it. It is all part of the evil of the tenth drug.
I wonder if 10 is a big number for an MS patient of eight plus years? It feels like a big number to me.
On some days, a single rainbow just doesn’t say enough. This day ordered a double.
This past week, my family and I went to Jamaica, to FDR which is our favorite family resort (for what it worth, TripAdviser.com has had them as the top family destination in Jamaica for years). For a family with medically fragile children, this place is a life line. Their nannies take excellent care of the medical and non medical children, and the resort is the perfect size. It’s big enough the parents can do things without the kids and small enough parents and kids can find each other whenever needed. We went last year, and we could not wait to get back this year. It’s the land of double rainbows where the pots of gold are smiles and free moments with spouses.
We were a little worried when the passport request for K was denied 12 days before we were to leave. However, the Maryland Department Social Services (DSS) office in Baltimore city came through in spades. We called our worker when we got the package returned to us Saturday. Sunday she came to our house and picked up the package. Monday afternoon, she brought the package back to us with the requested paperwork signed by a judge and notarized and other paperwork approved by DSS lawyers to meet the requirements of the State Department’s letter refusing the first application. For all many rightly bemoan bureaucracy, Baltimore DSS did well by us to get the passport reapplication accomplished quickly.
When I look back, I cringe thinking how much K would have missed out. She had her own nanny on the trip, and she thrived. People were amazed after the first day whenever we said she had problems seeing. We all watched as the first day we had to tell her “step” whenever there was one upcoming, but she quickly memorized the place and took off. She loved the pools, the beach, and even the water-slide. Watching her go from scared of sand to crying whenever it was time to go back to the room was a joy. I have never seen her so happy.
As for the rest of us, we got what we wanted too. Whether it was A getting a group of adults (the nannies) to play Parcheesi, O getting to hunt hermit crabs and play Foosball, or J and I getting to have quiet dinners alone to reconnect, we all got a much needed break.
That’s not to say there weren’t bumps along the way. When are there not? I can not for the life of me explain why A loved the water slide on alternating days with fear being the dominant emotion every other day. I still have no idea from where our kids drew their limitless energy rejecting sleep half the nights there.
However, the good days were so good, and the ability to rest and relax let me enjoy physical activity levels I have not had in years. When a day can start pushing K on a 5k run through the hills followed by a longer bike ride after breakfast, then some thing is going well. To have both of those things not tire me out for the rest of the days activities is an awesome testament to the value of the workouts I do most days at work and the efficacy of Tysabri thus far in controlling the physical symptom progression of my MS. I liked our date dinners on pier. J and I rarely get time to go out alone. Thank you FDR.
