I am going to start off with a quick up-date on the Tecfidera, as I don’t have a whole lot to say. I figure for those that are visiting here because you have googled the drug and found this blog, I don’t want to “force” you to read a whole blurb of my ramblings to just get to the part where I say..”all is good with the Tecfidera!” I have noticed that my number one keyword for search engines IS Tecfidera (hell, I think it is the ONLY word searched that has led someone to this blog.) I wish I understood more about all of that, how to put keywords in here that would allow for more people that MIGHT benefit from something here to find the blog. BUT I don’t. I know I can read about it, and begin to learn and understand, but I don’t have time for that. I would much rather just keep writing and sharing my stories, rather than get into some bullshit analytic stuff that I probably wouldn’t really understand that well anyway and wouldn’t change what I am writing about or how I say it anyway.
I have now been on the Tecfidera for about 2 months now (I wish I could be more specific, but time just blends for me.) As I have said since the beginning VERY slight side-effects the first few days (pain in chest that lasted about 10 minutes) and since then have had NO side-effects. I no longer have to take it with food which does help in that I can just throw it down the hatch with all the other pills when I first get up in the morning. I have written about the fact that maybe my “better moments” are getting “better.” Above and beyond that fact that the sentence makes me smile, what it means is that I have always had SOME better times; days, hours, moments, were things are “better” than they were or usually are. Maybe I get up and have a good morning meaning that after the initial teetering and wobbling to the bathroom and dips and slips as I get dressed my legs are steady, allowing me to walk Spanky, get through the morning routines of getting the kids off to school and put in a few hours of work before lunch and Spanky’s second walk of the day. All of this while running on the lower levels of my pain scale; I RARELY go below a 5, but have also only twice admitted to a 10. The main reason for that is if I admit it is a 10, then there is no where else to go, and THEN, what if it does get worse? What? Do I say I lied and that it must NOT have actually been a 10? I hate being limited…1-10 seems like too few options for me. But on this “make-believe” day, let’s assume I have been at a 5, and I haven’t overdone it in any way, and yet suddenly, out of the blue, it goes up to an 8 or 9 within less than an hour! WTF? WHY? I don’t know that I will ever have an answer to that, but I did have that “better,” I had the morning hours, where maybe an hour would pass without thinking “I have MS,” and that is why my legs hurt or I can’t carry this load of laundry up the stairs, or I tripped in the grocery store, or my underwear is damp because I really didn’t quite make it to the bathroom in time, but I’m too lazy to go change my pants and underwear, AGAIN. Whatever it is that makes me think of the stupid disease, there is always something. Because having that morning, that little bit of time IS better than most of the time that I have had over the last 7 years, and I have learned to appreciate those “betters.” BUT now, with the Tecfidera, I think that the number of mornings that I AM feeling better, and the amount of time it stays better, are both getting better, meaning there are MORE…more days and more hours. And that rocks!
I feel I must apologize for the absence from here and writing. I entered into this with the full intention of writing…if not daily then certainly a post every other day. So what the fuck happened? LIFE. I did NOT calculate in the fact that summer started, which means my kids do not leave every morning, allowing me the blessed time to quietly work and then also blog. Do not get me wrong, I love summer time and the relaxed schedule it creates; no longer having my alarm go off every morning at 5:30am to get up, down my first cup of coffee, quickly check emails before making lunches, waking the kids, making sure they actually EAT something, doing a quick cursory check to see that they have somewhat clean clothes on and get them out the door to be on time for school. BUT that also means that they DON’T get up until I think of it, and when they DO get up, it’s not like they have anything on their schedule to do. None of them have ever done the camp thing as I have always LOVED just hanging with my kids and playing. I was their camp. CAMP MOMMA? I LOVED that this was okay with them, that they never seemed to get bored of me and looked forward to heading to the park, or the beach, throw in a visit to the zoo or aquarium now and then and it made for a GREAT summer.
But life is different now. After the divorce, I am no longer the “stay-at-home” mom; my SOLE objective is NOT to raise great kids and provide constant entertainment and activities for them. I have a JOB, and although I suppose “technically” I am still a “stay-at-home” mom, because I work from home, that is NOT the same. EACH and EVERY request for food, or a ride to a play-date or question about being allowed to play X-Box or turn on the TV is an interruption to MY work day and getting the things I need to do, done. SO, rather than my JOB taking the usual amount of time, it is now taking MORE time. I am NOT logging more than my usual 40 hours, it is simply that to complete the tasks required of me, it is taking close to 60 hours, because I keep having to leave my computer to make sandwiches and smoothies, drive to the other side of the city to drop someone off, or battle about HOW much time they can have with “technology.” I would so much rather be visiting the parks and the beach; but thus far I have not managed to find a balance. Hell, forget balance! I am teetering on the edge of loosing it! But then…the reality and schedule of being divorced kicks in; their dad gets them for three weeks straight, and suddenly I am alone, the house is quiet and I can work and blog without interruption. You would think I would be happy, or at least relieved. BUT I guess I am just one fucking finicky person, because I’m not; I miss them. It sucks! The past two summers, they have traveled….I mean REALLY traveled! First to Peru and the Galapagos Islands and then last year to Amsterdam and Africa. WTF, I was married for 15 years and we NEVER left the country (ok, we DID go to Bermuda for our honeymoon, but that was a lifetime time ago and my passport has LONG since expired.) BUT now, my kids are jet-setting world travelers! I can’t lie, it was SUPER hard to have them SO far away, visiting places I have only ever Googled. It scared the shit out of me that they were traveling with family members that they don’t know very well, who are MORE than a bit volatile, mean and forgetful at times.
Well, this year, they are NOT going. They are making a short trip to Wisconsin, but other than that, they are here in town, just “hanging” out (I’m thinking that equals a hell of a lot of X-Box, Netflix and WarCraft time.) I’m not sure which is harder on me, having them off in foreign lands, doing things I can’t even imagine, with little to no contact, or having them a mile away and not being able to see them. I suppose the moral of the story is that it just SUCKS when I don’t have my kids. Always has, always will. I am NOT a clingy mom; I’d rather think of myself as a cool, hip mom that likes to do fun things. I’m pretty sure my kids would say I am a weird, “not always right in the head,” inappropriate mom, but also know that they would admit to having fun with me.
The good news is….after their three weeks with their dad (perhaps doing not much of anything….) it is MY turn, and I get them for three weeks! EVERY year, since Sam was born, I have taken the kids to visit my parents. On the surface seems like a “nice, family-bonding” thing to do. BUT my parents were SMART! Rather than simply retire in the same town where I grew up, which is NICE, but has limited things to do and would warrant a “mandatory” annual visit, that would last about a week and then we would all be clambering to get gone out of there, they chose to move to an island – Martha’s Vineyard. As a result of this wise decision, there is NEVER enough time when we are there. The longest that I have stayed there with the kids is 6 weeks, but it usually was between 4 and 5 weeks (with my ex coming out for always less than 1 week of that time.) It was (and IS) MY HEAVEN! It embodies all that is RIGHT in the world and allows me to share bits and pieces of my childhood with the kids. We go to the beaches and boogie board, snorkel, play Kadima, relax and read a book or two. We go clamming and fishing, sailing and kayaking. Our evenings are filled with cocktails, rides on the clam-cart (an old golf-cart, now relegated to trips to the beach and around the neighborhood,) family dinners and stupid crazy games.
My kids consider it their “third” home (my house and dad’s are the first two) and they look forward to going every year as much as I do. From the moment we leave the house here in Seattle, it is always an adventure. They have always been GREAT traveling companions, although I think that the year I traveled alone with the three; ages 4, 2 and 6 days old! MIGHT have raised an eye-brow or two. Over the years, there is always a story that comes out of just the traveling itself. Once I was diagnosed with MS, people wondered if I would continue to make the trip. After all, it IS a long, tedious trip (plane, to bus, to ferry just to get on the island means almost 12 hours of traveling.) The East coast is known for it’s heat and humidity in the summers and heat is an MSers worst enemy, exacerbating any and all symptoms. Using the cane (or even the Segway) on the gravel and dirt roads, the beaches and docks would be tricky. It wasn’t going to be the same…
It only got better. There are SO many stories to share from the trips that I have made in the years since being diagnosed. The year that they confiscated my Segway and would not let me take it with me to the island (even though the airline had PROMISED that it would be alright.) The time when in the airport when we almost missed our flight because some security guard had taken off on my Segway and was no where to be found. A hair raising trip in a wheelchair – flying through Logan airport, being driven by one crazy ass-dude. Being on a fishing charter, with an amazing Captain and first-mate that rigged up a hose-shower over me, to continually cool me off in the 95 degree sun, as I fished to my hearts content with the kids (plus I could then pee as needed because NO ONE would know and the “shower” water just washed it away!) Over and over again, my kids have shown me just how grown up they are, and how kind and helpful they can be. That first year that I traveled with the MS, I WAS scared and nervous. What if I fell down? What if the fatigue and pain hit so hard that I just couldn’t make it to the bus on time and we missed our only ride to the ferry dock? What if I peed my pants on the plane because there was some stupid person in the bathroom, taking an insane amount of time to do god knows what in that tiny little cubby they call a bathroom? What if my eyesight went to hell in a hand-basket and I lost one of the kids because I couldn’t see? But none of those things happened, I mean, maybe I DID pee a little bit while waiting for the bathroom, but I was prepared and had an extra pair of undies and a zip-lock baggie in my purse (learned THAT trick from when the kids were little!) The fatigue and pain WERE bad on the plane, but nothing a vodka tonic or two couldn’t remedy just before landing. It gave me just the little “pick-me up” needed to get to the bus. I DID fall, getting on the ferry, but you know what? The ferry employee that was standing at the entrance greeting all of the passengers, caught me before I hit the ground (BTW, SUPER good looking guy) and commented that the ramp had not come in straight when docking and many people were tripping….so it wasn’t just me (wink, wink!)
In three short weeks, I will be boarding a red-eye with my kids (oh, and Shawn too, he is coming for the first week!!!) Even though I still work my regular job from there, and there will be tons to do and see, I am going to work really hard at not going MIA on all of you that are reading my blog. Mainly because I want to share it all with you…each and every part of it. Last year was the first time since being diagnosed that I didn’t have or need my cane, and although I felt fairly steady on my legs MOST of the time, it was still a bit trying at times. I am so excited to go this year, and see and feel all the improvements that have been taking place over the last twelve months (but also since starting Tecfidera.) Those “NEW betters” are continuing and are more and more frequently. I almost feel as if I am coming to EXPECT them, although I am not sure if I will ever DARE to actually do that. After all, there have always been ups and downs and the un-knowns. That is the thing about this disease. It is NEVER going to be smooth sailing; it is NEVER going to be what I expect; but if I can learn to accept that, then maybe I can begin to feel like I have a little bit of control back. So stay tuned for my 2013 Martha’s Vineyard adventures, there are sure to be some good stories and then you all can help me choose this years holiday card picture…thinking I will ask everyone to vote!