Despite The Bad…I am Thankful

It’s cliché, and everyone who really knows me knows that I’m not a big fan of clichés, but several years ago I started writing annual Thanksgiving notes listing what I’m thankful for and why. I usually post it prior to or on Thanksgiving but this year I couldn’t bring myself to write it. I must have started and deleted about ten versions of my annual Thanksgiving note before deciding that maybe this was the year I’d stop doing it altogether.

My oldest sister passed away last year to brain cancer after a 2 month battle and everyone kept telling me that the first of each holiday would be the hardest and gradually they’d get easier. They wouldn’t get better and they’d never go back to what they once had been but they’d get easier. A large part of why I found my annual note hard to write this year was because it didn’t feel easier this year. It felt and continues to feel even harder. I’m sure that part of it is that my sister passed away November 2 and on November 15 we held the memorial service. Thanksgiving hit just a week or so later and we were all still reeling from the events and turmoil that began with her diagnosis on September 4^th.  My father’s brother and his wife were here with us last Thanksgiving and it didn’t seem so odd or sad or horrible. We all felt the loss of my sister, the empty chair at the table, but with my aunt and uncle here there was distraction and I also don’t think any of our minds had really had time to fully wrap themselves around the fact that my sister was gone and would never be back. This year was different.

This year it was just our parents, my other sister, and I - a family of four where a family of five used to be. I was struck hard when I realized Wednesday night that I’d been wondering when my sister would get here. The sudden realization that she wouldn’t be coming and would never come home for another holiday again slammed into me hard. Sitting at the table for Thanksgiving I couldn’t help but be very aware that there was an empty chair and that it didn’t feel like a holiday. My other sister and I got into an argument over something fairly trivial because I was in such a touchy mood and so very close to the edge. Then I remembered that despite everything that had happened and our horrendous loss I still had so much in my life to be thankful for and that’s what I should be focused on.

So what am I thankful for this year?

I am thankful to have grown up with two truly amazing older sisters who are my heroes and role models even if I was only granted 30 years with one of them.

I am thankful to the friends and family who have supported me through thick and thin and all of the ups and downs the last several years especially 2014.

I am thankful to have my aunt, uncle, and cousins back in my life, which is one of the many gifts my sister gave us in the end. Her illness and her death allowed old grudges to be put aside and for us to reconnect.

I am thankful to have a number of people in my life that may not be blood related but are my family. They are the family that I have created as I have gone through my life. They are other parents, brothers, sisters, nephews and nieces.

I am thankful to have survived a serious bout of sepsis at the end of August that was horrifically scary to everyone around me including everyone at the hospital. I’ll never forget the looks on the faces of everyone who came through who saw me seizing, saw my temperature top out at 106.2, and saw me freezing. I’ll never forget that so many of them were certain that they would leave the room and by the time they’d be able to make it back that I’d be gone. I am so thankful that I managed to survive.

I am thankful for my amazing medical team who year after year has saved my life over and over again and has never given up on me. They listen and they know that there are things I simply can no longer handle and never pressure me. They understand the hell I’ve been through medically and are proud of the fight I’ve put up but also acknowledge that it’s harder and harder.

I am thankful to still be here walking (or well…in my case…hopping and rolling) around this earth because I am acutely aware that these infections could have and probably should have killed me years ago. Life is such a precious gift even during the hardest of times that we should all cherish and never take for granted. It is not infinite the way we think it is when we are children. Life is very very finite and it is over far sooner than we think it will be.

I am thankful for the puppy who has made the last several months easier for all of us with her sweetness and energy. She’s put smiles on our faces and joy in our hearts again. She can’t fill the hole that my sister’s death left but she helps immensely especially on the days we miss her the most.

Yes, life has been hard for this family and we’ve endured a lot. I’ve had 60+ surgeries and while we do not dwell on it, we all live every day knowing that another infection could pop up at any moment or that my Multiple Sclerosis could flare up and due to my allergies there’s little I can do about it. We all live with the pain of having lost my sister and the times when we want to call her to share our excitement, ask her opinion, or give her crap over something and knowing that we’ll never do any of those things again. We also all live with the knowledge that the infections that plague me are happening more frequently and that one of these days my will and my strength won't be enough. Yes, this family has been through a lot and it would be so very easy for us to dwell on it and claim to have had nothing but bad luck in our lives but that’s not how any of us were made.  We acknowledge the bad but we concentrate on the good.

Thanksgiving was difficult this year for me but despite everything that has happened and what will no doubt happen in the future…I am thankful.

False Advertising for Multiple Sclerosis

I have seen multiple posts about the commercial for the MS drug Tecfidera but haven’t said anything about it until now. I’ve been distracted and off my game between sepsis at the end of August, the anniversary of the day my sister was diagnosed with brain cancer at the start of September, and then the anniversary of her death on the 2^nd of November. I’ve seen the commercial several times and thought a number of things that I never got around to writing down.

I just saw the commercial again and decided that because I am already on the computer that now is the perfect time to make my thoughts on this known. I was diagnosed with Multiple Sclerosis at 19 in 2003 though the doctors now believe I was 8 or 9 when my MS journey actually began. It just wasn’t thought of as a pediatric disease so no one thought to look for it. It still largely isn’t considered a pediatric disease and most primary care physicians still don’t add it to the list of possibilities when a child comes in with bizarre symptoms but I will say that it’s getting better and more kids are being diagnosed when it starts which gives them better odds for their future with the disease. As someone who has been living with it for years, I find the commercial for Tecfidera to be a terribly bad representation of life with the disease and of the drug.

The Tecfidera commercial shows a woman capable of doing pretty much anything because she takes this pill. She seems to transition very fluidly between jogging, swimming, hiking in the woods, and going to an amusement park. To look at her you’d never guess she has an incurable, progressive, and debilitating disease. I keep waiting every time I see it for the disclaimer that this is an actor portrayal and that she DOES NOT have the disease herself.

This commercial makes it appear like those of us with MS simply need to pop this little pill and we’ll be off to the races immediately with more energy than we know what to do with. This is false advertising and it is unacceptable and insulting to portray people with MS and the disease in general in this way. It gives the public, most of whom can’t really tell you much about MS to start with, the wrong impression of what it’s like for a person to actually live with MS.

I actually took Tecfidera so I know what I’m talking about when I say that it doesn’t represent the drug well. I also know several others who have or are taking this drug and no one has found it easy to start. In my experience and in the experiences of several others, for the first two weeks or so you turn into an itchy tomato every time you take it turning bright red all over and feeling almost as though you have poison ivy. That’s just the starter dose. It takes two weeks or so of suffering through that before you feel human again after taking it but there’s more to come. Once you’ve moved up to the full dose you go through those two weeks or so once again. It’s not an allergic reaction to the drug it’s simply a side effect.

I, for one, did not get the bursts of energy that the woman in the commercial seems to have nor did it get rid of all of my symptoms allowing me to leap small buildings in a single bound which is basically what the commercial is saying. No one else I know who has been on this medication has had either of those things happen either.

I can’t speak for anyone else, though I know many will agree with me, but if you’re going to make a commercial about MS or about a treatment for MS, you should do it realistically. The reality of MS is so very different from that of the way the company chose to depict it. I realize they are trying to sell their drug and make money and a depressing commercial is not the way to go but you can make a positive commercial while still being accurate.

Just my two cents on the Tecfidera commercial. Some people may take issue with it and think I’m wrong but I believe most will agree with me.