I realize that it has been a while since I gave an update on my experiences with Tecfidera (Biogen Idec‘s new MS DMD.) I believe that when we were last together, talking about this…I was in Shawn’s bedroom, in middle of the night, COVERED in shit and sobbing. The good news is that it’s ALL cleaned up (amazing what some commercial rug cleaner and a steaming machine can do….maybe I should try and get an endorsement from a rug cleaning company!!!) The bad news is that I still have not figured out how to resolve my issues with constipation. I want to share what I learned yesterday; according to the nurse on the “Tecfidera Helpline,” constipation is NOT a known symptom of the drug. I was informed that to date, NO ONE ELSE has reported this problem to their database of symptoms….no patients, no care-givers,no nurses, no doctors. That means there are NO records of this being a symptom….none, nada, nein, nyet, nie.
BOY, don’t I feel special!
I am NOT implying that the nurse was rude, or intending to be unhelpful. She was EXTREMELY kind, and polite, and as helpful as she could be; but at the end of the call, that “help” didn’t do shit! Because even though my DOCTOR suggested that I call the Tecfidera Helpline, the nurse ended our conversation with this….”maybe you should call your doctor.” Huh, ya think? It’s the circle of life….around and around, I go.
BUT that is the problem, I don’t GO!!! I need to figure out something, and fast. In the post I wrote this morning, I talked about my experience with buying Depends. I mentioned that it wasn’t because I was peeing my pants more often, and that it was just an “experiment” to see what they are like…BUT full disclosure is…I bought them as a precaution to what MIGHT happen as a result of this HUGE back up, and all the remedies I am trying. To date, I have NOT had a reason to be wearing a diaper, but let’s be completely honest (as if THAT is a new thing for me!) Let’s remember what Shawn’s house went through…and knowing THAT…one can only imagine WHY I might feel it necessary to have a “back up” plan on my “backside.”
I have left another message for my doctor (or at least the nurses there in the clinic) and will wait for a call back. For those that are following this blog BECAUSE of an interest in Tecfidera and what it is like to be taking it – I guess that for the moment I am supposed to be telling you that all this talk about constipation and being full of shit it NOT Biogen’s fault – that it is NOT Tecfidera that is causing me to be full of shit. The most truthful answer that I can give you is that I don’t know.
WHAT I DO KNOW:
1.) I DO know that I have NEVER had problems with irregularity or constipation before.
2.) I DO know that there is nothing else significant that has changed in my life – NO other new meds, no eating differently, stress levels about the same as usual.
3.) I DO know that they have had reported problems with “GI” issues, heartburn and “stomach problems.”
4.) I DO know that it seems to me that IF taking it can cause such problems it doesn’t seem a huge leap to say that it may cause problems with fecal compaction…BUT, I am not a doctor, so I guess I end this list of things that I DO know, with saying
I DON’T KNOW!!!
THAT is one of the most annoying things about MS – ALL the unknowns. NOT KNOWING how I am going to feel this afternoon – will my legs be strong enough to participate in the birthday bowling Shawn has planned? NOT KNOWING what tomorrow will be like, or WHEN the next flair up is going to hit. NOT KNOWING what life will be like next year, or five years down the road. NOT KNOWING when I will have to pull the cane and Segway out of storage. NOT KNOWING if I will be confined to a wheelchair someday. NOT KNOWING if the day will arrive when Shawn has to worry about diapers and changing me.
This all seems SO distant at the moment, because other than the “poop problem” (as my kids have named it) I am doing well. MOST days are good days, and it does not go unnoticed or unappreciated that I CAN walk without the aid of a cane or walker. I am grateful that the pain IS better and that there are actually now moments in my life when the voice in my mind STOPS the constant and repeated mantra “I have MS, I have MS” and I have brief moments of “forgetting.”
I could choose to sit here and worry about the “whens” and “what ifs”, but there is NO WAY IN HELL I am going to do that. It’s a waste of time. After all, the truth is, maybe if I hadn’t “checked the wrong box on my life application” and I didn’t have MS; maybe I would have been in a horrible car accident, that instantly left me paralyzed and unable to care for myself, or even THINK about what was lost. Maybe instead of me “getting” MS, one of my children was struck with disease or sickness, and all I can do is sit helplessly by, wanting more than anything to make it better, to take the pain away; to desperately wish that it was ME instead of them living through such a terrible thing. But none of that happened. Instead, I got MS.
That really doesn’t seem SO bad, when I look at the alternatives.
For those reasons, as I sit her on my 43rd birthday, I feel lucky! Lucky that I AM doing better; that I was strong enough to move forward with my life, and leave behind a situation that left me sad and lonely to find a new life that is filled with happiness, love and support. Lucky that I have three of the MOST amazing children, that will continue to grow and drive me NUTS with their confidence and ability to argue; which will lead them into roles in this world, where they will do great things, and be kind and sincere and empathetic. Lucky that I have great support and people that love me and will be there for me when the chips are down.
I will continue taking Tecfidera, because as was the case when I first started, I believe that I need to take an active role in trying to slow the progression. If I choose to NOT take a drug that is available and “works” for me (meaning no flu-symptoms or allergic reactions or unbearable side-effects) and my MS progresses, I will be pissed at myself. IF I choose to take the drug and my disease progresses, I can at least feel that I did try and prevent that progression, I did what I could do. I suppose in a “worst case scenario” I could blame the drug, rather than myself, if I needed to vent anger and frustration. But for the moment I am good and I am optimistic about the future (AND looking forward to my NEXT birthday, 44 has ALWAYS been my lucky number!) I am not going to allow a little “poop problem” to get in the way of fighting back.