Happy 4th of July!!! Tecfidera Update…..still working



This the 3rd year that I have joined Shawn (bf) and his kids for a huge gathering in Ocean Shores.  They have family friends that rent out a  house and people come from near and far, packing bodies into every square inch of the house, staying in RVs, camper vans and tents.  Any where will do.  We spend the weekend eating great food, playing all sorts of games (we won the Beach Beer Pong tournament!!!) and hanging around having a great time!.  For the actual 4th, everyone drives their cars down onto the beach, we build a huge bon-fire and spend the afternoon and evening with more food drinks and games.  It is nearly impossible to get a head count as people are constantly coming and going but this year being the 50th wedding anniversary for the grandparents, it is by far the biggest it has ever been.  It is a huge Mexican family, with relatives all over the place, and boy do they know how to have a good time!  It is so amazing to be a part of this tradition.

This year, Shawn had a special treat for me.  Having arrived down here late Tuesday night, we got up at 3:30 a.m. and went…..FISHING.  There were 13 of us in total and we went out for the day, salmon fishing, on the vessel “Blue Eyes.”  I caught an 11.7lb KING!!!!!  NOT the biggest catch of the day (17.9 lbs) but I am still pretty damn proud of myself!  Just a few years ago there is NO WAY I would have been able to bring this fish in on my on, as it involves a LOT of strength but more important; balance and stability on your legs.  As the fish runs and fights, you have to move your way from bow to stern, following the lead of the fish.  I have always LOVED fishing and thought that it was another thing that I would have to leave in my past, BUT sorry to say (for the fishes sake at least) I am BACK!!!!  I can not wait to get home and fillet this sucker up!  Since Shawn caught one too, we are going to smoke one and use the other for some GREAT bbqing!  HAPPY FOURTH EVERYONE!!!

On to the meds part of this post…Tecfidera: how is it going.  Excited to report that it is still going well, AND I am beginning to gain confidence in saying that it is helping the with whole MS shit thing.  The symptoms ARE getting a bit better!  We have had some pretty hot days lately and as always, if I have a day that IS good, I over-do it, struggling to get as much done as I can, not knowing when that NEXT good day will grace me with it presence.   BUT the thing that is different, is that one good day, is followed by another and then sometimes even another.  So even though it is 85-90 degrees outside, and I have spent the day yanking all the damn weeds from my yard, I am up and ready for more the next day.  This shit doesn’t happen…hasn’t happened since I was “normal” back in 2007.  I have to say, kinda liking it!

I did have ONE set back, and had to bring my cane out for two days (first time in almost 3 years!)  BUT I knew WHY it happened: I had a night that I didn’t sleep at all, not one stinking minute, and my stress level was through the roof.  Here’s what happened… I had this neighbor lady (hardly knew her, but to say hello when out walking Spanky.)  She and her 11 yr old daughter were renting a room from the man that owns the house in front of mine.  He sold the house and last weekend was the day the new people moved in.  Although the renter had been given almost three months to find a new living arrangement apparently everything had fallen through.  As I was visiting to say goodbye to the man that had owned the house, I was making small talk with her….THIS IS WHERE I MADE THE MISTAKE.  I asked her where she was moving, and she burst out in tears, sobbing that she had no where to go.  As she tried to gather herself, she quietly stammered that she would probably go stay in a hostel for the night.  WELL, of course I can’t bear to hear that and I blurt out “nonsense, you can stay on my couch!”   It’s what I do…it’s what I have ALWAYS done.  It is part of who I am and I can’t stop being that person.

BUT the problem with this particular offer, was that my house really is TINY…and it is cramped when it is just me and the kids (oh and Spanky.)  SO offering up the couch, really was NOT a swell idea.  There are two tiny bedrooms on the first floor (Piper has her own, boys share the other) and a small bathroom.  Then you head straight up the stairs into the living room/dining room/kitchen area…..it’s a multipurpose room.  It’s all combined, which means no walls, space or privacy.  If someone is on the couch, that person is right there in the room with you as you make your coffee in the morning or you are cooking a meal.  There is another set of stairs that leads to the 3rd floor and my bedroom and bathroom.  That’s it, nothing more.  This woman had done a fairly decent job of ridding herself of all worldly possessions and arrived with two large suitcases, two house plants and a fish in a tank.  That’s it.  In the hopes of giving her SOME sense of privacy, and space, I asked Piper to sleep with me that night, so that the woman could have Piper’s room.  I also figured that would give her a space to be/hangout, without being RIGHT in the midst of our lives.  BUT I didn’t anticipate that she wouldn’t take advantage of this, and would rather just sit on the couch and interject herself it EVERY aspect of our lives.  After the first night, she left for a few hours, only to return and say that the place she had visited was a “dump.”  UT OH.  The second night came and went, with her there, inviting herself to eat the dinners I prepared for the kids, just seemingly liking being a part of our lives.  On the third day, she mentioned that her daughter was arriving home that afternoon (was wondering where she was) and how much SHE would like my kids.  AAGGGHHH, there wasn’t enough room as it was, and certainly not room for ANOTHER body.  I was beside myself!  I wanted to do the right thing…wanted to help her, but I was quickly realizing that not at the cost of my own family being comfortable and happy.  As it was, the kids all crammed into the boys room all the time because they didn’t feel comfortable with her being upstairs.  SO a LONG phone call to my dad, who told me under NO circumstances was this woman to bring her child there to stay even for one more night, and then another one to Shawn, who reiterated what my dad had said.  I HAD TO DO IT.  I had to tell her that there just wasn’t room.  And just as I had feared, she did cry and I felt awful to have her sitting there telling me that she and her daughter had no where to go.  I can’t even imagine being in that situation!  But I did wonder, where were her family?  She certainly talked about them a lot and how close they were.  Where were her friends?  She has apparently lived in the area for over 20 years.  As I stated, I can’t imagine being in this situation, having even ONE night of not knowing where the kids and I would sleep but I think that is part of what I began to realize, I can’t imagine it, because it would NEVER happen.  I have too many wonderful and amazing people in my life, that would NEVER allow that to happen.  They would help me and have my back.  I don’t know that I can “blame” this woman for NOT having that, but not knowing her, I can’t judge why she doesn’t.

All of that led to stress and lack of sleep which equals REALLY bad legs.  SO the cane….BUT the point I wanted to make is, once I got a good nights rest (one of those REALLY deep sleeps) I got up, and even though the morning was alreadt pretty warm, my legs were good…no they were GREAT!  Never before have I had a situation, that led to my legs going wonky and then giving out, not lead to a flair-up.  It has been inevitable; stress – lack of sleep- pain- legs bad = flair up and steroids!  BUT not this time, I slept and my legs were okay and the cane was put away….bye-bye PINKY!  So THAT is why I am feeling more confident in saying it is working….because of THAT, which hasn’t happened up until now.  So I will give credit to Biogen and Tecfidera and will say that I appreciate it, a LOT!  I have heard from others that are on it, or tried, and so far I haven’t found anyone that is in my corner, with little to no side effects and noted improvement, but I certainly hope that they are out there, and it’s just that I haven’t heard from them.  I feel guilty that I am feeling better, that it seems I might have found something that DOES something.   I want that for each and every one of my new MS BFFers! I want everyone to find that “something” that works, that helps dealing with all of this stupid shit even a little bit better.  Whether it be Tecfidera, Tysabri, Avonex, pot or VS… just something that works.

4 Replies to “Happy 4th of July!!! Tecfidera Update…..still working”

  1. So glad to hear it’s working! I’m supposed to see my neuro this month; will have to ask him about it. He’ll probably say since the Copaxone is working w/o problems, I should stick with it for now. Makes sense I guess. I already got kicked off using Rebif (I developed antibodies), so I guess I should let one drug do all it can for me before trying something new. Would love to not be giving myself shots every damn night, though!

    1. True that if it is working, maybe don’t mess with it….BUT a pill twice a day as opposed to the shot daily does sound better, at least to me. I did the shots, (Avonex) for about a year and NEVER got used to it. It would take a FEW glasses of wine each week to get up the nerve and then sicker than sick for 24 hours after, EVERY week. Kinda sucked. Let me know what you end up doing.

  2. So glad to hear the meds are working for you:) I’m in a little dilemma as I have the JC virus (as do most people) but when you get Tysabri it can be a very bad combo:(
    But Tysabri works soooo well for me so I’ll be sad to change meds but I don’t want to have PML which is a possibility. I’m beeing kept a close eye on by the doctors so I should be pretty safe but still.

    Sounds like a fantastic weekend and well done catching the fish:)


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