For those that have been waiting/looking for an update about my experiences with Tecfidera, I DID finally remember to write one! Truthfully part of the lack of writing about it, is there isn’t that much to say, it’s been going pretty well, but hit the end to know all the details.
Looking back, I am amazed at how different my life is. Almost exactly four years ago, I asked my husband for a divorce. It was not an easy decision for me to make. I took my vows VERY seriously, I believed in the concept of “married for life.” To be perfectly honest I viewed divorce as a failure to live up to a promise that was made. Unfortunately, some marriages just aren’t meant to be, or to last. I was married for almost 15 years, and we have three beautiful, amazing children. I would NEVER change that. But I was married to someone that was not in love with me, was not attracted to me and didn’t particularly like me. There certainly was not a friendship that we could lean on for support and in the end, I was so tired of being lonely, that the thought of being alone for the rest of my life, seemed a better alternative to constantly hoping and then feeling let down.
As off kilter as it sounds, being diagnosed with MS was the start of me finding the strength to end my marriage. Who would think that getting a disease that leaves you exhausted and weak, could make you stronger? What it allowed me to do, was put myself first; to think about my needs and feelings, rather than focusing on everyone and everything else all the time. I had many hours alone to think; while sitting awake at night, unable to sleep because of the leg spasms and pain or because of another dose of steroids to ward of the most recent flair up. I would check into the infusion center for whatever cocktail was on the menu for that day, and spend those hours, sitting alone, and thinking. I thought long and hard about it. The more I thought, the more I realized that I WOULD be happier alone rather than always hoping it would change, wishing it would be better. It was not easy; it was a long road to travel down, and I’m still not at the end of the journey but getting out of my marriage seems to have been the best decision for me, myself and my health.
Thanks to the incredible support and love from my family and friends, my life now is so different from where I was four years ago. When I woke up this morning, I lay in bed, curled up between Spanky and Shawn, and took a few extra minutes to take a walk down memory lane. I thought about what life was like back then, all of the differences and things I have accomplished. By the time that little journey came to an end, there were tears streaming down my cheeks. One might think they were tears of sadness; thinking about the times when I WAS so sad and lonely. Or maybe from happiness and gratefulness for all that I have in my life now. BUT both would be wrong, because as I lay there this morning on a beautiful early spring day, listening to to birds chirping outside the window, I was laughing my ass off because it struck me that today’s post could, and would be one that I have been waiting to share. It’s the story of….
MY BOOTY CALL!!!
Back when it was ending, and I finally admitted to myself, my family and then the world, that my marriage was over, I began to think I may have chosen the wrong time in my life to finally get a divorce. Not that I regretted what I was doing, and not because I was suddenly frightened to be alone. It wasn’t something as profound as that. It was for the simple fact that apparently women reach their sexual peak around age forty, which is something I didn’t know until I got there myself. Some of what I was feeling at the time may have been heightened by the fact that I hadn’t had sex in years and longed to have intimacy in my life, but, looking back, I also figure that the age thing probably had to do with it as well. I started to think about sex a LOT, and then I began to read in numerous sources that sexual dysfunction is a common thing for people with MS. It is actually a question on the form that you complete at the doctors office each visit. I had never even bothered to answer that particular question. Since I wasn’t having sex and hadn’t had sex in a LONG time, I didn’t know if it was not functioning. I began to wonder more and more about it, and then worry about it. If I was going to enter back into the world of dating, I really needed to know if it all worked.
While talking to a friend from high-school, I told her about these concerns. She made a suggestion that at the time seemed completely insane; and yet she made it sound so simple and logical. “You need to make a booty call.” Insane for two reasons; first, who the fuck would I call? Second, I couldn’t imagine ever getting up the courage to ACTUALLY make such a call let alone follow through with it and ACTUALLY have sex with them. After all, it just wasn’t something I did, EVER. I had been married for 15 years and even before then, when I WAS in the dating world, I had NEVER called a guy for sex.
But time, and my constant obsession about sex, and not having it, eventually brought me back to that conversation. I began to think long and hard about who I could call, even making a list of criteria; needs to be single, someone I already know, needs to know about my MS and seem to have a general understanding of my symptoms, willing to participate AND attractive. I realize that beggars can’t be choosers, but I figured if I wasn’t attracted to him, it would definitely put my odds of “success” and having “it” work, at risk. Based on this criteria, I then made a list of potential candidates. There weren’t many. I honestly didn’t think I would ever have the guts to actually call. As I thought about it more and more, I realized that I was at a huge turning point in my life and that I needed to live my life the way that I want to live it; be who I want to be and not what others expect me to be. Be true and genuine to MYSELF. Since I found myself thinking about “it” and sex a lot, I figured that “it” and sex must be part of who I wanted to be. Someone that could enjoy sex and have an intimate relationship be a part of my life again.
After many hours of thinking about it, and weighing my options, I finally decided on the WHO and then began to think about the HOW. One afternoon, while sitting in the parking lot of a local grocery store, I made my booty call to someone that I had gotten to know, that actually had MS himself. That small detail is probably THE reason that I was able to make that call. I felt that he probably had some of the same worries and concerns, if not presently faced with them (meaning “it” still worked for him and he was still HAVING sex) that he must worry about what will happen in the future. He met all of my criteria, and had this extra BONUS working in his favor. Plus, we got along well. He made me laugh, and that seemed like it might be a useful trait for what was to come.
The conversation started with “now, you can’t laugh at me.” To which he promptly responded “yeah I can, but I won’t.” I explained to him the whole lack of sex, hitting my sexual peak, and concern about dysfunction and ended with “so will you be my booty call?” He did laugh, a LOT. Really, who can blame him? Who wouldn’t laugh? He laughed for a really long time, which did NOT help me with my nerves and courage. After a long pause, he responded, “yeah, I could do that, after all I AM a giver.” So, now I had my booty call (referred to as BC from here on out) but had to figure out when and where, and if I could really go through with it. My self confidence was “lacking” to say the least; I felt like a triple D, but NOT what some might construe that to mean. I was DISEASED, DIVORCED and DESPERATE. I had no idea if I really would or could do it, but felt I needed to try, to figure out IF I needed to add yet another D to that list – DYSFUNCTIONAL.
The logistics were planned out so and all I had to do was wait. Which was not easy, as I’m not a particularly patient person to begin with and add horny AND worried to the equation and it was a LONG wait. On top of that, BC actually backed out on me, not just once, but several times. I would get a call, or a text from him, saying it wasn’t going to work, or suggesting that he “might” have his girls that weekend. Once, he even said he had a headache, which MIGHT have been a reasonable excuse if it wasn’t a week and half before the planned date. There were a number of different excuses. So NOW, not only am I pathetic enough to be CALLING a guy to have sex, but I am being turned down by the guy, and find myself almost BEGGING him. There was more than one time that I was pretty sure my life could NOT get any more pathetic.
As the wait drew to an end, and I had received my umpteenth text from him, making yet another lame excuse, I finally decided to called him. I needed to know what the hell was going on. Was I really that “icky” that he couldn’t bear the thought of being with me? Having gotten to know each other pretty well over the past year, I knew that he “talked” a good game, about women and his “conquests.” If that was the case, then why couldn’t I just be one more notch on his headboard? It seemed to me that I would be the “ideal” woman for him. I was NOT looking for anything BUT sex, I didn’t live in the same city (or state for that matter) and I certainly did not want a boyfriend (or any form of relationship.) In the morning, I would be long gone. So how was it, that he was just turning me down.
It ends up that TWO can have the same issues and concerns, especially when BOTH parties are “lucky” enough to have the fantastical disease, MS. In the weeks leading up to our “date” he began to have his own problems and concerns over sexual dysfunction. The closer it got to THE NIGHT, the more problems he had, and so he figured he just wanted out. I sure as hell wasn’t going to let him off that easy. I had managed to actually make that stupid fucking call, to admit to my fears, and open myself up to all sorts of embarrassment and ridicule. I TRUSTED him, and I sure as hell wasn’t going to let him back out of it for the EXACT same reason that I had made the call in the first place….NOT KNOWING IF IT WOULD WORK, or if we would both be adding another label to our ever growing list of labels – SEXUALLY DYSFUNCTIONAL.
On the night that I was to meet up with BC, I was a wreck. I don’t have a doubt in my mind that he wasn’t feeling some of the same doubts and fears, but I felt that he had an advantage over me. One of the effects of my marriage not being healthy, is that I didn’t have a whole lot of self confidence when it came to feeling attractive. I had said as much to BC and asked that even if he were lying, when we met, to assure me that someday, somewhere, some guy would find me attractive. By putting that out there, I had made it more personal that I had intended, and as the hours ticked away, and he still hadn’t responded to calls or texts and hadn’t shown up, I found myself more upset about my hurt feelings than my horniness. PLUS, I had even gone above and beyond to try and help him with HIS problem.
Once again, NOT a call I thought I would EVER make, and more than slightly embarrassing. Just before leaving town, I called a really good friend of mine, to ask if he knew how/where I could get a Viagra. Believe me when I say, NOT an easy ask. First off, there is the whole “wait a minute, WHO the hell are you having sex with?” thing. Not to be outdone by the simple fact that no healthy, viral single man is going to want to ADMIT that he actually DOES have Viagra. After all, what is that saying about THAT person and their sexual condition? Even KNOWING that I would be faced with these questions and issues, I called! AND…after more than a bit of work, I managed to get one! ONE…single…. “Mexican” Viagra. I’m not sure WHAT the hell that is, or if it IS actually a “thing” to tell the truth, nor would I want to take it. BUT, I had at least tried to help BC with his problems, and was feeling pretty pissed off that he wasn’t going to return the favor.
BUT….then he did arrive. When he finally made it there, I was amazed that there really wasn’t any awkwardness. We both knew WHY we were there, and what was supposedly about to happen, which made me cringe with the thought “weird, weird, and weird.” Even though I didn’t know him all that well before making the call, and was extremely worried about feeling embarrassed, it just didn’t happen. Perhaps because I made the right choice picking him as my BC? Maybe because having MS in common provided us with some sort of bond, or understanding, that might not have been there with someone else? I don’t have that answer, but as we sat and talked for a while, he leaned in, gave me a kiss and said “hey, you remember what you asked me? You have nothing to worry about sweatheart, you are smoking hot.” I have be honest and say, I could have just heard those words and gone home happy. It’s amazing what a few words can do for ones confidence. But, please, I hadn’t been through ALL of that for just words….
The good news was that it all did still work, for both of us. It was a fun night. He was kind and caring and maybe because he has it too, he listened to me about the MS and understood my fears. He knew about the lack of feeling in my legs, and that I was petrified that my leg muscles would seize up and he took care in making sure that I was ok every step of the way. He also gave me something else that was greatly needed. A night of smiles, laughter, and having fun with someone that genuinely seemed to enjoy being with me. It had been such a long time since I had connected with someone on that level, and it made me realize how much I missed that, and wanted it back in my life.
I have not seen BC since that night almost four years ago, although, we occasionally banter through facebook and text messages. I sent him a message about a week later that read “I have a new problem! Now that I know it works and I had sex, I just want more!” Which is ONE of the many reasons that I am so happy to have found Shawn (and his “cure for MS.) I don’t know just how long this “peak” is supposed to last, and maybe it ended, and I am just making up for lost time, or missed opportunities? I certainly don’t have the answer, but then again, I don’t really care. I am just really happy to be enjoying sex and being in a relationship with someone that does too, and who wants me to stick around.
When I started writing my book about a year later, I wasn’t sure whether I would have the courage to include a chapter about making a “booty call” but the farther along I got in the book, and the more stuff that I did include, it made me realize that the only reason that I would NOT put it in, is because of some crazy, stupid notions that our society seems to place on sex, when in actuality, it’s a natural thing. People do it. Hell, none of us would be here if our parents hadn’t done it. So, once I let that “issue” go, and I looked at all the other private/secret/taboo things that I was writing freely about, it just seemed logical that of course I would include it. If my goal is to try and connect with other people that have MS (or other similar diseases) and let them know that they aren’t alone, no matter what the topic is and what happened, then I need to be willing to NOT have boundaries, to put it all out there. One thing that I have learned from starting this blog, I am certainly NOT alone. No matter what it is that I am writing about, there is always someone that reaches out to me (whether it be here, or twitter or fb or email) to share THEIR story, or their opinion, or to just say thank you for letting them know that they AREN’T the only one. As I joked with one new MS BFF the other day, “no, you aren’t the only one…sorry to say, you are just not THAT special.” No matter what “it” is, there is someone else that has had their own version of “it” happen.
I realize that it has been forever since I have given an update on my experiences with taking Tecfidera. The honest truth is, there really isn’t ANYTHING to say. Even the issues with constipation that the nurse on the help line assured me wasn’t from taking the Tecfidera, has gotten better. If you have read my other updates (or my HORRIFYING story of SHIT) and are wondering IF I now know/believe that it was in fact the Tecfidera, I can tell you that I am 99% sure (and that 1% of unsureness is more that I don’t think you can say/believe anything 100%) But, I did go off of the medication twice during the past year, because I could NOT find any way to relieve the constipation. BUT, once I stop taking it, I return to regular within just a day or two. The first time I stopped taking it (for what I now call MY CLEANSE) I went back on within a week, and was ok for about a month (maybe a bit more) and started to find that I was getting backed up again. So again, I stopped, CLEANSED and started again. BUT this time it seems to being going better, and the solution that seems to be working for me, seems a BIT odd, as I have tried prunes/prune juice, Miralax, eating MORE fruits and veggies, although I eat a LOT to start with…but the answer sees to be…V-8 JUICE. I have NO idea WHY THIS would work, any more or better than prunes/prune juice or any of the FRESH fruits and veggies I eat, BUT the fact is, that it does. I have now been back on it for over 3 months and having every day regular movements….SO not going to question it, simply going to buy a ton more V-8 when I hit Costco again next week!
SHOULDA’ HAD A V-8!!!