When people ask me, what do you want for Christmas, or I make a New Years Eve wish as the clock strikes twelve, or I am blowing out birthday candles, a stock answer is usually "my health", “my family’s health”. Everyone has done this right?. But do we really mean it? I know I thought I did, but I was just saying it. Recent events have truly kicked me in the ass and made me realize how insincere that sentiment was as I carelessly let it slip from my lips.
My mom asked me what I wanted for Christmas this year before Thanksgiving and my answer was “something no one can give me”. I got that stupid knot in my throat that I get when I think about my life the last how many months before Thanksgiving.
Mom countered with, “what’s that supposed to mean?”
I said quite simply, “my health Ma, I want to be whole and healthy again”. As I sat and got absorbed in my self pity after I hung up the phone, I thought of how many times I have wished and prayed for my and my family’s health forever now and realized it was perfunctory. It was just something I said.
Stuff started happening with my daughter Katie and her heart not too long ago, she is wearing a holter monitor as we speak and she’s on a beta blocker while the cardiologists are trying to figure it why she gets tachycardic the way she does. What the hell, I thought. She's young, she had some ovarian cysts and that's it, what in the hell is going on?
Then my grandson got sick, really sick and my world just crumbled. I had a lot of time to sit and think and I realized just what that wish for my family’s health meant. As I sat in the PICUs waiting area, I bargained with God. I told him He could take my ability to walk, to balance myself, to see, keep me this dizzy forever, whatever MS was doing or taking away from me, if He made my little man better. Saved his little life. I told him He could take everything from me if He would make my Antknee better, make my whole family healthy again.
That is when I think I finally got it. Got what it meant to wish for me to be healthy, for my family to be healthy. When he started getting better, I made a promise that day, I would never just say "my health, any of my loved one's health" when asked what I would like for a gift, what I wanted for them in the New Year, what I wanted for my birthday. If I was saying it? I was meaning it. There is no Gucci or Kate Spade handbag that will keep anyone I love healthy, no fancy, waste of money car that I am driving around like a show off that's going to make me happier than my family being ok.
When Brad just asked me what I wanted for Christmas this year and I said I got the best Christmas present ever? That is the truth. No amount of money could buy me a gift that could replace my Anthony being here to celebrate with me. My family being healthy around me. I want absolutely nothing that money can give me, and let me tell you, that was the most liberating thought in the world. I have never felt more satisfied, happier than you can imagine with all that I am blessed with. I am soooo much better off than most, every time I open my refrigerator now, and see the amount of food that is in there? I say a small prayer of thanks. I don't have to go to bed hungry like so many do. Every time my girls and I make cookies, I say a small prayer of thanks. My girls are here with me, I saw little kids who weren't leaving the PICU, and here I am blessed with my girls, having an amazing time, being together and laughing. Dealing with all I have lately? Definitely gives you pause, but I like to think I am dealing with all of this because I can. I can deal, I can understand, I am supported and loved, and we carry each other. How sad it is that I know so many who put a price tag on happiness because their family lives are so empty?
And that feeling is shared by my family. It has been infectious. When we put our Christmas lights up together and marveled at the wonderland we created, replete with a giant inflatable Snoopy, or Foopy as our little man calls him, for Anthony, my heart was surely ready to explode from my chest. Yeah I was stumbling like a drunken sailor trying to string out lights through our bushes, but I honestly didn’t care. And yes my Christmas lights have purple bulbs in the strings of color, because if any of you know me, purple is my signature color and it screams Merry to me.
Anthony is home from the hospital, Katie has a plan in place to keep her healthy. Erin is home from college and got all A's in her interior design classes so proud! Bailey's belly is burgeoning with my granddaughter, a healthy, fiesty, little gymnast who likes to wake Bailey up at 5AM every day. My Heather is growing into this wonderful young woman. She saw the things Anthony had to live through and I was touched as she cried when Anthony had to get blood work done and was so upset. Her heart is so gentle it touches mine. Brad had a wonderful experience at the Crossfit Games, but has chosen to focus only on us for awhile, and I have to admit, I'm not even mad about that lol! My family is here around me. And me? I will be alright. Because I won’t let it be any other way.
Honestly, I feel sorry for those whose family’s don’t understand that lots of money and possessions mean squat. I wished everyone I know could have felt what it was like putting up my Christmas lights this year. Feel what I felt when I finally understood that all I truly want is for my family to be healthy, happy and together. I seriously feel like the Grinch, my heart is growing three sizes.
For those of you who don’t get it, don’t understand that possessions are meaningless without your health? Who has to have the latest Iphone, or tech gadget, latest popular trending item, fancy car, who are on what I like to call the giant hamster wheel of want? Get over it.
The phrase the one who has the most toys wins? It's a load of nonsense. I think it's more like you can't take it with you. I also like to think it's like my favorite scene from one of my favorite movies Ghost, when Sam says, "It's amazing Molly. The love inside, you take it with you"
If that's the case? I can die a happy woman, knowing all of the love I will be taking with me.
Wednesday, December 20, 2017
Monday, July 31, 2017
WI here we come!
Today I have been thinking non-stop about this coming week. I almost feel like it's Christmas Eve!! So much to look forward to. We are headed to Wisconsin! Yeah, ok, I am sure it's not the destination of anyone's dreams like say Hawaii, but the reason we are going? It is a dream come true for us! We have worked so hard to get here. I chuckle to myself every time I say that out loud. But like Brad said it was "us" that made this possible.
I think back how many months ago when we sat down to discuss this. Brad said he was considering seriously trying to qualify for the Games. He had been to Wodopalooza and the Granite Games, several times. Both amazing events at truly exciting venues. But they weren't the "big show" in his opinion. They weren't the Games. Brad has always enjoyed competing at any level. Loves to have something to train for to keep him interested. Anyway, when we sat to discuss him making a run at the Games we both knew what type of time investment he would have to make, and subsequently the rest of the family would have to make, to even try to qualify. After a bit of talk and processing we both decided the time was right. He was really doing well in his training. Things looked promising.
Then, when we were all psyched for the Open, it happened. He tore his meniscus. That right there would have been the end of any kind of qualifying dream for most athletes. But not Brad. After getting help from a friend who knows knees (her contact name in my phone is Steph-knee lol) we got that situation as under control as we could. My husband had to manage some pretty grueling qualifying work outs getting his knee drained, getting cortisone injections and wearing a brace.
I have to admit I was kind of pissed though. Hadn't he dealt with enough? He had to live through everything with his dad right before Wodopalooza this past year. He missed so much training taking care of his dad's end of life issues. When we sat back and talked about that, it was time he would never trade for any training for any competition. Moments, some so incredibly hard, that he holds so close to his heart and wouldn't have if he didn't make the decisions he did. He handled all of that so beautifully, with such love and grace. Being the epitome of the most amazing son of the world. Taking care of both his mom and his dad, single handedly, and honestly not caring about anything but them? He was the reason that that time in their lives was the easiest it could be. Making it possible to send my father in law to where ever we all may go after our time here is done, comfortably knowing his wife would be taken care of and watched over by us.
As always he would accept no excuses for not doing as well as he wanted at Wodopalooza. He thought he just didn't perform as well as he knew he could. When I mentioned to him all he had to live through, and especially the mental aspect and he still managed to do as well as he did? After all of that ffs??? It's what sets him apart from your average athlete. That ability to overcome and still manage to do all that he did? That mental toughness? That physicality? You are the whole package and you are amazing!
So those were points I made while we were dealing with this whole knee debacle. Brad was pragmatic as always and not willing to make excuses for anything. He would do what he could do and if that got him to the Games? All the better. And guess what? It did get him to the Games....
The big show....
The moment we have worked for...
Nothing was handed to you....
Let's add an extra dose of hard just 'cause the fates were being bitchy....
The moment we made it through these obstacles for....
It came in a congratulatory email that only 20 fifty year olds world wide get....
Now he will bring up he qualified at only 19th. Good, let everyone dismiss you not realizing how much more you had to endure to qualify at all. Both physically and mentally. Let them not know you did all of that injured and mentally preoccupied once again.. Believe me when I say I think Brad suffers more with all that I have to deal with than I do. Because he can't make me better, he can't help me when I try so hard to walk and look normal, when he finds me having moments when I am truly sad about all of this knowing I will always have to deal with some level of disability now. But he honors me with saying I am the "why" when he hits a workout up and crushes it. That me showing the strength and fortitude I show with trying to get through every day, smiling, taking care of my family and myself as beautifully as I do according to him? It makes him want to smash workouts and give it his best to honor me. Stop it you're making me blush Brad!
Conversely? He's my why too. He is the reason I look forward to waking up every day and see him laying beside me. I know how lucky I am. I see how he gives 110% in everything he does from competing, to work, to being a dad, a son and a husband. He's nothing short of Superman in my eyes. Just making it, once again dealing with every thing in front of you? And this time on the next level really? I can't think of many people who could. Most would just give in to their reality, use it as an excuse. But not you, you are my Jon Snow (I would have said Arya but you're a boy hahaha!)** my hero. The toughest man I know with the softest heart *sigh* the reason mine beats.
I am incredibly proud of him no matter where he finishes. Even if he finishes 20th? He can still kick almost anyone's ass hands down. You've had a ton of adversity to overcome both physically and mentally and yet here we are. Packing our bags and getting ready to hit Wisconsin up. Watch out Crossfit Games! Winter is coming**
The dynamic duo is on it's way, you may never know what hit you!!
**shameless Game of Thrones plugs included for my Bud lol.
I think back how many months ago when we sat down to discuss this. Brad said he was considering seriously trying to qualify for the Games. He had been to Wodopalooza and the Granite Games, several times. Both amazing events at truly exciting venues. But they weren't the "big show" in his opinion. They weren't the Games. Brad has always enjoyed competing at any level. Loves to have something to train for to keep him interested. Anyway, when we sat to discuss him making a run at the Games we both knew what type of time investment he would have to make, and subsequently the rest of the family would have to make, to even try to qualify. After a bit of talk and processing we both decided the time was right. He was really doing well in his training. Things looked promising.
Then, when we were all psyched for the Open, it happened. He tore his meniscus. That right there would have been the end of any kind of qualifying dream for most athletes. But not Brad. After getting help from a friend who knows knees (her contact name in my phone is Steph-knee lol) we got that situation as under control as we could. My husband had to manage some pretty grueling qualifying work outs getting his knee drained, getting cortisone injections and wearing a brace.
I have to admit I was kind of pissed though. Hadn't he dealt with enough? He had to live through everything with his dad right before Wodopalooza this past year. He missed so much training taking care of his dad's end of life issues. When we sat back and talked about that, it was time he would never trade for any training for any competition. Moments, some so incredibly hard, that he holds so close to his heart and wouldn't have if he didn't make the decisions he did. He handled all of that so beautifully, with such love and grace. Being the epitome of the most amazing son of the world. Taking care of both his mom and his dad, single handedly, and honestly not caring about anything but them? He was the reason that that time in their lives was the easiest it could be. Making it possible to send my father in law to where ever we all may go after our time here is done, comfortably knowing his wife would be taken care of and watched over by us.
As always he would accept no excuses for not doing as well as he wanted at Wodopalooza. He thought he just didn't perform as well as he knew he could. When I mentioned to him all he had to live through, and especially the mental aspect and he still managed to do as well as he did? After all of that ffs??? It's what sets him apart from your average athlete. That ability to overcome and still manage to do all that he did? That mental toughness? That physicality? You are the whole package and you are amazing!
So those were points I made while we were dealing with this whole knee debacle. Brad was pragmatic as always and not willing to make excuses for anything. He would do what he could do and if that got him to the Games? All the better. And guess what? It did get him to the Games....
The big show....
The moment we have worked for...
Nothing was handed to you....
Let's add an extra dose of hard just 'cause the fates were being bitchy....
The moment we made it through these obstacles for....
It came in a congratulatory email that only 20 fifty year olds world wide get....
Now he will bring up he qualified at only 19th. Good, let everyone dismiss you not realizing how much more you had to endure to qualify at all. Both physically and mentally. Let them not know you did all of that injured and mentally preoccupied once again.. Believe me when I say I think Brad suffers more with all that I have to deal with than I do. Because he can't make me better, he can't help me when I try so hard to walk and look normal, when he finds me having moments when I am truly sad about all of this knowing I will always have to deal with some level of disability now. But he honors me with saying I am the "why" when he hits a workout up and crushes it. That me showing the strength and fortitude I show with trying to get through every day, smiling, taking care of my family and myself as beautifully as I do according to him? It makes him want to smash workouts and give it his best to honor me. Stop it you're making me blush Brad!
Conversely? He's my why too. He is the reason I look forward to waking up every day and see him laying beside me. I know how lucky I am. I see how he gives 110% in everything he does from competing, to work, to being a dad, a son and a husband. He's nothing short of Superman in my eyes. Just making it, once again dealing with every thing in front of you? And this time on the next level really? I can't think of many people who could. Most would just give in to their reality, use it as an excuse. But not you, you are my Jon Snow (I would have said Arya but you're a boy hahaha!)** my hero. The toughest man I know with the softest heart *sigh* the reason mine beats.
I am incredibly proud of him no matter where he finishes. Even if he finishes 20th? He can still kick almost anyone's ass hands down. You've had a ton of adversity to overcome both physically and mentally and yet here we are. Packing our bags and getting ready to hit Wisconsin up. Watch out Crossfit Games! Winter is coming**
The dynamic duo is on it's way, you may never know what hit you!!
**shameless Game of Thrones plugs included for my Bud lol.
Saturday, July 22, 2017
Life is like a Box of Chocolates
Who doesn't love that line from Forrest Gump? It's so true, you never know what you're going to get. I jokingly referred to this saying, in regards to my life once, as life is like a Pandora's Box of Chocolates. I don't think I realized how spot on I was though.
We all know the story of Pandora's box, or I thought I did. I can guarantee you I didn't open the magical box of MS handed to me out of curiosity to see what would come flying out at me. In the mythological tale so many awful things flew out of Pandora's box (actually it was a jar) but there was one last thing left after pain, disease, misery and the like burst out, and that was hope. I had forgotten about the hope left in the bottom of that box. Hope was there, in the bottom of my Box, I just kept choosing to ignore it. The whole analogy of my life being a Pandora's box of chocolates took on a whole new meaning after I reread the story. I now find myself grabbing on to my box, and the hope left inside, to make it through every day.
I have this book that Brad got for me right before life threw us this curve ball. It's called the 5 Minute Journal and it basically is about practicing appreciation. Learning to be grateful for everything you are blessed with. Believe me when I say there have been days I'd rather throw the book at the wall than write anything positive, so I don't write, but I find myself reaching for it the next day filled with some renewed sense of gratitude brought about by some of the smallest things in my life (could it be this book is working lol??). It can be as simple as hearing an I love you from my grandson, or getting blood work back showing my body is doing just fine on this disease modifying drug that I am on that could modify more than just the MS I deal with. Or maybe it is a check in from one of the many of you, who are usually people I don't normally hear from, talk to, or would even describe as close to me. It honestly does make me smile because I had no idea that people would take any kind of interest in me and what is going on. Or maybe it is my husband bringing me coffee in bed every morning with a smile and an I love you *sigh*
I recently found a new neurologist whose specialty is MS. He spent two and a half hours examining me, taking my history and discussing treatment with me. Two and a half hours of giving me new hope where there was nothing but a lot of struggle mentally. He and his nurse were fabulous and I walked out of there feeling like maybe there was a glimmer of light at the end of this dark MS tunnel I stagger down down every day. It gave me the strength to search for places to try equine therapy, which is supposed to be so helpful for people with Ms. Or MS support groups. I found one called ActiveMSers that is a positive only group and they firmly believe that MS is BS, meaning MS is Beatable Someday. When I get discouraged? When I need hope? I remember this medical team I have now that sent me an email after my visit telling me we had this working together. I think of the check ins from my friends, I think of my husband and my family literally letting me hold on to their arms while I walk, which I metaphorically compare to them shoring me up during all of this.
I tell myself that with everyone's help, new medications and my new medical team, that MS is beatable (sounds remarkably like hope at the bottom of my Box doesn't it?). It is why I still work out and keep myself in the best shape I can so when the cure comes, I can get back to working out hard and not miss much. It is something I pray for every night as I drift off to the land where I am healthy again, running marathons, doing Crossfit hero workouts, lifting crazy weights, and don't ever have to concentrate on walking to make sure I don't fall. A place where I can drink as much water as I want to and never have to worry about making sure a bathroom is nearby, a place where I can feel the warmth of the sun on my face and not have to worry if it will sap every bit of energy I have and force me off of my feet until I cool off. A place where I can walk and not have people staring at me trying to figure out what the hell is wrong with me. Someday when I wake up I want those dreams to be my reality again and I need to physically and mentally be ready for this. That's my hope in the bottom of my Box.
I have hope and gratitude way more often than not lately. I appreciate my life's little triumphs each day, regardless of how small and unimportant they might be to anyone but me. I have chosen to assemble them into my very own Whitman's sampler. Only my new box of chocolates? They are all good ones, ones that I will happily share with humanity. I actually look forward to opening this box and adding to it every day.
Monday, July 3, 2017
5 times a charm
I have started this four times now, not really knowing what I want to say or how to put into words what my life has been like. The last four attempts came out all wrong. One I was wayyyy too positive, and that, to me, was just a huge lie. Yes I have positive times, but there are days when I am on the opposite end of the spectrum and feel like crying more often than not.
One was angry and frustrated. Lashing out at people, the people bitching and moaning over stupid things, like poor me, I can't get my pull ups, poor me, I can't work out because I hurt myself. Guess what, I feel like screaming, you CAN do the physical things I only dream about doing now. You WILL heal. I never will ever so I don't want to hear your petty concerns when I am struggling to do regular living things.
And don't get me started on the people who felt the need to tell me how lucky I am it isn't worse and nonsensical bullshit like that. Yeah, tell me I am lucky when walking requires every ounce of concentration and energy I have, or how I am not driving because I am so dizzy. I know these people mean well right? I have to remind myself to think of all of the wonderful friends who reach out to me almost every day, just to check in, say hi, offer to give me a ride if I need one, help with my mundane life stuff if I need it. In the same breath I need to get past the people who I considered friends near and dear to me that have been pretty much absent during all of this. The people who went absolutely ghost. I try to explain to myself that we all have lives and are busy, or this sort of thing is difficult to deal with for some people, but I don't feel like having to make excuses or being understanding right now. I need the kindness and compassion so many others have offered. I have no desire to soothe someone else during my own issues.
But still I have a need to release my feelings, to clear my head, maybe a post that needs to get out. Some kind of positive way to let myself move forward and deal with the hand I have been dealt.
Can I though? My world is spinning wildly out of control.
More accurately? I have become an illness.
I look in the mirror and furiously hunt to see someone familiar, someone I used to know. How do I move past this? How do I move past the questions I face in my mind every morning?
One was angry and frustrated. Lashing out at people, the people bitching and moaning over stupid things, like poor me, I can't get my pull ups, poor me, I can't work out because I hurt myself. Guess what, I feel like screaming, you CAN do the physical things I only dream about doing now. You WILL heal. I never will ever so I don't want to hear your petty concerns when I am struggling to do regular living things.
And don't get me started on the people who felt the need to tell me how lucky I am it isn't worse and nonsensical bullshit like that. Yeah, tell me I am lucky when walking requires every ounce of concentration and energy I have, or how I am not driving because I am so dizzy. I know these people mean well right? I have to remind myself to think of all of the wonderful friends who reach out to me almost every day, just to check in, say hi, offer to give me a ride if I need one, help with my mundane life stuff if I need it. In the same breath I need to get past the people who I considered friends near and dear to me that have been pretty much absent during all of this. The people who went absolutely ghost. I try to explain to myself that we all have lives and are busy, or this sort of thing is difficult to deal with for some people, but I don't feel like having to make excuses or being understanding right now. I need the kindness and compassion so many others have offered. I have no desire to soothe someone else during my own issues.
But still I have a need to release my feelings, to clear my head, maybe a post that needs to get out. Some kind of positive way to let myself move forward and deal with the hand I have been dealt.
Can I though? My world is spinning wildly out of control.
More accurately? I have become an illness.
I look in the mirror and furiously hunt to see someone familiar, someone I used to know. How do I move past this? How do I move past the questions I face in my mind every morning?
I think longingly of when I would looking forward to the day. Spending time in the morning drinking coffee with my amazing husband, planning how our days would go. We'd talk about the workouts we were going to do, what we had to do at work. It was how I loved to start my day.
Now I wake up because my bladder is screaming at me to move and get out of bed. The urgency is something I go through easily 30 times a day now. Me getting up and actually getting out of bed? Well that brings up a whole host of what ifs that are pretty unnerving, the first being what if I can't walk? Then what if I can't actually pee? Or what if the crushing dizziness decides to come back today? What if the Aubagio keeps making my hair keep fall out like this? I could continue, but you get the idea.
After that whole thought process the rest of my thinking gets pretty skewed. I find any positive outlook I am supposed to have difficult to hold on to. I am locked in a mental battle of I am bigger than this disease and no, you really aren't. Even after three days of infusions, almost 20 days of steroids and being on a disease modifying drug that has insanely unsavory side effects, you still look like a drunk when you walk. As my daughter and her boyfriend helped me walk on the beach a week or so ago, I said I am getting a t-shirt made that says, "I'm not drunk, I have MS" so people will stop staring at me. This is my life now, I just want to peel out of my skin and hopefully leave MS with the shedded skin. That underneath it all is life as I wish it could be. I feel so betrayed by my body. I am not asking for much, I just want some kind of normal that everyone takes for granted.
That's the worst part for me I think. Trying to do something as simple as walking on the beach or even walking to the ladies room while we are out without looking like I am doing a bad impersonation of Captain Jack Sparrow, or needing a personal escort, without the gaping mouths and stares. It all gets a little discouraging. The whole positive mental attitude, the whole I am bigger than this kind of flies out the window. I become self conscious, I try to act like I don't see it, but I do. That it doesn't bother me, but it does.
I want to be able to run into the grocery store and pick up a gallon of milk and run out without having to hold on to a shopping cart for dear life. Without walking so slow that there are snails and turtles feeling sorry for me as they lap me. Without it taking forever to do something that used to take me 10 minutes max.
Yesterday was my daughter Erin's 18th birthday. I wanted to make her a birthday brunch she wouldn't forget, because breakfast foods are her most favorite things ever. I knew I needed an early start, I got started by 8:30. Brad came in and helped me about half way through, and we were done around 11. I was grateful for the help because honestly? I couldn't do it alone, I was getting exhausted from the effort. We enjoyed an awesome brunch together, cleaned up, and I needed a nap. I was so wiped from something that simple, that once upon a time I could do by myself, all burners of my stove going at the same time, no problem. Not anymore. After my nap I came downstairs and started making her birthday cake, and dinner. The cake had to be gluten free, so I made it from scratch, and chicken alfredo was easy enough, but by the time I was done with the next round of cooking I needed to sit. As a matter of fact I had to sit through the whole meal making process, I was thankful our stools were tall enough for me to be able to sit and cook at the same time.
It was gratifying with how she thanked me, she knows how hard any amount of standing is for me, any amount of physical anything can be for me. But cooking for my family's birthdays, making their cake, an amazing brunch and favorite dinner is something I have always done, and not something I am prepared to stop doing no matter how hard it is on me. I'm not ready to wave the white flag on this activity yet. Still it made me sad when I thought of how taxing it was. When my daughter gave me a hug and kiss and thanked me for the millionth time saying how much she truly appreciated it, I answered back, "I may not be able to do everything like I used to, but I will always be able to cook for the people I love.
So maybe that's how I develop the positive attitude I need for every day. Look for and celebrate the things that I can still do. Not take for granted things like being able to see and try to keep a grateful heart for those things. Be glad that I am blessed with so many people who will just sit and hold my hand and listen, whether it be in person or virtually, that constantly let me know that they care. Be grateful that I have the family and husband that I do. I cannot imagine how hard all of this is on them. How hard it is to see me struggle physically or mentally every day. I cannot imagine how hard it would be every day for me to not have their love and support. I think more than for me, but for them I owe them my best effort to make every day the best it can be. So maybe that will be my plan. My survival guide. I need to do something because this mental tennis match I play every day is getting old and quite frankly pissing me off. New strategy, new game plan.
I will let you know how it all works out.
Adversity has the effect of eliciting talents, which in prosperous circumstances would have lain dormant ~ Horace
Friday, May 26, 2017
It's my holiday and I need to go do a lot of nothing
I have declared today a Danielle holiday. Yep, a day to just me, I am going to take extra special care of myself today because I have decided today is The First Day of the Rest of my Life Day. I feel I need to celebrate me. Funny how the contents of a package can make you rethink how you look at things.
Yesterday a knock at the door sort of sent my world spinning. Well my world sort of spins for no reason a lot of the time but anyway... The Fed Ex man came with my Aubagio. I cannot get this medicine from my local Walgreens. It has to be ordered through a special pharmacy and they deliver it every 28 days to be exact. When you decide to be treated with this drug you have to fill out paperwork and send it back to your doctor. They fill out their part of said paperwork then send it to Sanofi Genzyme, the developer of Aubagio, and you get enrolled in the OnetoOne program. They deal with your insurance company. Quite a process. So anyway, as sort of a welcome while they get your insurance squared away they send you a 15 day supply of Aubagio to start. Then a registered nurse calls you. My nurse's name is Darlene, she is assigned only to me and is available 24/7. She walked me through every thing I needed to know about starting this and what to do if I have anything pop up that I need to report.
She told me not to take my first pill until this morning instead of yesterday afternoon. I had my daughter's senior concert last night and she said it could cause stomach issues when you first start to take it and stay close to home so I could rest if I needed to. I told myself ok I can wait a day. I have stomach issues all of the time without any medicine so big whoop. Just deal and suck it up buttercup.
But I would be lying if I didn't admit that I have been scaring myself witless about taking this medicine. Come on Danielle, just consider potential side effects I start thinking for the millionth time, you have every right to be so apprehensive. Alright I mentally chastised myself, I decided I needed to stop thinking like that. Stay away from the what ifs, they are worthless. I hate feeling like a little bitch about anything and I wasn't having it. I screwed up my courage and I took the Aubagio in my hand, which they said to open over something soft in case the pill dropped so it wouldn't break. It's not like dropping an Ibuprofen on the counter. We are talking about $340 a pill and while I wouldn't cry over spilt milk, I might over a shattered Aubagio. I swallowed that sucker like a boss.
That's when I decided I can look at this in a positive or negative light. I could look at this as this could cause so many issues I don't want to deal with, or, and this is what I am going with, this is going to help change my illness course for the better. Change me for the better. Swallowing that little tablet was the start of something really good. Yep, today is the first day of the rest of my life. And isn't that the truth? Hence my holiday being born.
After I took that pill and with this new attitude coursing through my thoughts, I triumphantly marched back up to my bed and snuggled in. I started joking around with my husband when he came in our room. I asked him if I started growing horns yet. I made my mind up taking that pill that this was truly an exciting moment. That I was taking control of my illness, that his was indeed the first day of the rest of my life. I am lucky that I have medications I can turn to change the course of this.
So everyone celebrate the day with me anyway you want to whether it's sitting outside for lunch feeling the warmth of the sun on your skin, maybe read a favorite magazine or book, plant some flowers, tell someone you love them, call your best friend, scratch your fur babies because a well treated animal makes me happier than I can say. Wear something purple because purple is my signature color after all. Do something that makes your heart sing. You have to promise me you will have fun celebrating my day and keep nothing but a positive attitude while you are enjoying Danielle Day.
Yep, it's Danielle Day! Someone please have a toast for me since alcohol is something I cannot partake in anymore.
Your hardest times often lead to the greatest moments of your life. Keep going. Tough situations build strong people in the end.” ~Roy T. Bennett
Yesterday a knock at the door sort of sent my world spinning. Well my world sort of spins for no reason a lot of the time but anyway... The Fed Ex man came with my Aubagio. I cannot get this medicine from my local Walgreens. It has to be ordered through a special pharmacy and they deliver it every 28 days to be exact. When you decide to be treated with this drug you have to fill out paperwork and send it back to your doctor. They fill out their part of said paperwork then send it to Sanofi Genzyme, the developer of Aubagio, and you get enrolled in the OnetoOne program. They deal with your insurance company. Quite a process. So anyway, as sort of a welcome while they get your insurance squared away they send you a 15 day supply of Aubagio to start. Then a registered nurse calls you. My nurse's name is Darlene, she is assigned only to me and is available 24/7. She walked me through every thing I needed to know about starting this and what to do if I have anything pop up that I need to report.
She told me not to take my first pill until this morning instead of yesterday afternoon. I had my daughter's senior concert last night and she said it could cause stomach issues when you first start to take it and stay close to home so I could rest if I needed to. I told myself ok I can wait a day. I have stomach issues all of the time without any medicine so big whoop. Just deal and suck it up buttercup.
But I would be lying if I didn't admit that I have been scaring myself witless about taking this medicine. Come on Danielle, just consider potential side effects I start thinking for the millionth time, you have every right to be so apprehensive. Alright I mentally chastised myself, I decided I needed to stop thinking like that. Stay away from the what ifs, they are worthless. I hate feeling like a little bitch about anything and I wasn't having it. I screwed up my courage and I took the Aubagio in my hand, which they said to open over something soft in case the pill dropped so it wouldn't break. It's not like dropping an Ibuprofen on the counter. We are talking about $340 a pill and while I wouldn't cry over spilt milk, I might over a shattered Aubagio. I swallowed that sucker like a boss.
That's when I decided I can look at this in a positive or negative light. I could look at this as this could cause so many issues I don't want to deal with, or, and this is what I am going with, this is going to help change my illness course for the better. Change me for the better. Swallowing that little tablet was the start of something really good. Yep, today is the first day of the rest of my life. And isn't that the truth? Hence my holiday being born.
After I took that pill and with this new attitude coursing through my thoughts, I triumphantly marched back up to my bed and snuggled in. I started joking around with my husband when he came in our room. I asked him if I started growing horns yet. I made my mind up taking that pill that this was truly an exciting moment. That I was taking control of my illness, that his was indeed the first day of the rest of my life. I am lucky that I have medications I can turn to change the course of this.
So everyone celebrate the day with me anyway you want to whether it's sitting outside for lunch feeling the warmth of the sun on your skin, maybe read a favorite magazine or book, plant some flowers, tell someone you love them, call your best friend, scratch your fur babies because a well treated animal makes me happier than I can say. Wear something purple because purple is my signature color after all. Do something that makes your heart sing. You have to promise me you will have fun celebrating my day and keep nothing but a positive attitude while you are enjoying Danielle Day.
Yep, it's Danielle Day! Someone please have a toast for me since alcohol is something I cannot partake in anymore.
Your hardest times often lead to the greatest moments of your life. Keep going. Tough situations build strong people in the end.” ~Roy T. Bennett
Sunday, May 21, 2017
Life Shrinks and Expands in Proportion to One's Courage~Anais Nin
I wrote a blog once upon a time about the word "if" and all of the wonderful possibilities that this word brings. But lately, I have come to fear the word "if" if it is preceded by the word "what". My world has been turned upside down by the phrase "what if".
My stomach knots. These what ifs keep my ever racing brain company if I wake up in the silently scary wee hours of the morning. They fly through my head when I am sitting trying to concentrate on the most basic activity. What ifs pop up while I stagger around trying to get my legs underneath me.
So this morning, after Brad so graciously brought me coffee in bed, I what if'd at Brad. I told him I had so many what ifs scaring me, I could barely think straight some days. He decided, after reading a book that his Comptrain coaching group sent him for making it to the games, that we would face every thing, just like he was reading in The Obstacle is the Way, we would what if out loud and do away with my fear of the what if. So we started...
What if I lose my hair? This is a very real possibility for me with the Aubagio. I am not a particularly vain person but you know, losing your hair is a pretty upsetting prospect, especially for a woman. There are some guys that can totally pull off being bald, think the Rock, LL Cool J, Cal Ripken. Brad said he would buy me neat hats to wear. I have always been a hat person, I could potentially live like that if I had to. I thought maybe we could do like my favorite Calvin and Hobbes comic strip when Calvin cuts off all of his hair and Hobbes colors all of it in again with a yellow sharpie haha! I guess if I have to choose between an infection in my brain that will cause me to die, or losing my hair as potential side effects from the medications that I need, I will go with Losing my Hair for $600 Alex.
What if I am mean to you guys after my infusions? Get nasty with the very people who have been supporting me through all of this. I saw my dad ride the cortisone roller coaster from taking his oral steroids every day. I read this could be way worse, I really wasn't looking forward to that. We decided I would warn everyone in my house what was going on and try my best to hide from people until I feel more stable emotionally.
There were so many what ifs, so many scary ideas we tried to put in their place and hopefully they will leave me alone.
I ended our what if session with a doozy. What if I am bald, in a wheelchair at the Crossfit Games. The ultimate exhibition of fitness on earth. And there will be me looking like, well like some bald woman in a wheel chair. I got a little vaklempt when he said he would be so proud of me. All I could think of is what is there to be proud of? I can't do Crossfit anymore. My workouts each day are so simple, so basic. I am definitely not doing anything as impressive as these people do at the Games.
Or am I?
What is more impressive? Strutting around with my ass hanging out in booty shorts with no boobs like most Crossfit women who compete, or waking up each day, forcing myself out of bed, making my way down that scary flight of stairs and helping my girls get out the door to school with a good breakfast in them, and lunches made for their day, me starting their day with an I love you, have a good day and a kiss?
Is it more impressive, to choose to beat myself up physically just to say I can snatch, front squat, back squat or clean whatever heavy weight is prescribed for the workout, or beating myself up physically taking the scary drugs I am prescribed so I can be here for my family, and keep myself as healthy as can be given the circumstances? Who is stronger metaphorically speaking??
Is it more impressive to have the physical strength to endure a weekend of workouts to be crowned the "Fittest on Earth" or more impressive to manage through that weekend, being the biggest fan and supporter of my husband, making sure I am there for him just as much as he has been here for me since all of this started regardless of how I am feeling physically?
Isn't it more impressive to do all of the research I have done, learned what to do to help myself through diet, supplementation, and exercise so I can heal myself as much as I can before any medical intervention? More impressive and have the strength to admit that I have to adapt how I work out, with my fan blowing on me and ice water nearby so I cool down and continue working out so I can maintain what good health I have now? Or is it more impressive being able to crush a workout, you and your competitors being the picture of vitality and health. Who is truly showing their strength?
I suppose all of these who is stronger thoughts are there to show myself that I have a lot more going for me than Crossfit, more strength than what comes from cleaning or bench pressing and that is more important than being able to say I RX's a WOD when it comes right down to it.
I have to keep reminding myself I have the strength of 1000 Crossfit athletes when it comes to doing all I have to do each day, to live as normally as possible so I can be a good mom to my four girls, to take care of my 4 beasts, to be an awesome Nee to my Antknee. Most importantly, I carry myself through every day with the most hopeful attitude as possible to be the best wife I can be to my husband. The man who is standing beside me and making me feel like everything has a chance at being better than normal, even with all of this yuckiness surrounding me. Telling me this is an opportunity to change for the better and do things I have never done before, to look at this as the start of something good.
I always wanted to marry a prince who would make my dreams come true. At least my MS has shown me that I was lucky enough for that to happen. Hopefully he has a white horse too, I always wanted a horse as a pet, and I understand they do wonders as part of MS therapy.
And suddenly you know: it's time to start something new and trust the magic of new beginnings~Meister Eckhart
My stomach knots. These what ifs keep my ever racing brain company if I wake up in the silently scary wee hours of the morning. They fly through my head when I am sitting trying to concentrate on the most basic activity. What ifs pop up while I stagger around trying to get my legs underneath me.
So this morning, after Brad so graciously brought me coffee in bed, I what if'd at Brad. I told him I had so many what ifs scaring me, I could barely think straight some days. He decided, after reading a book that his Comptrain coaching group sent him for making it to the games, that we would face every thing, just like he was reading in The Obstacle is the Way, we would what if out loud and do away with my fear of the what if. So we started...
What if I lose my hair? This is a very real possibility for me with the Aubagio. I am not a particularly vain person but you know, losing your hair is a pretty upsetting prospect, especially for a woman. There are some guys that can totally pull off being bald, think the Rock, LL Cool J, Cal Ripken. Brad said he would buy me neat hats to wear. I have always been a hat person, I could potentially live like that if I had to. I thought maybe we could do like my favorite Calvin and Hobbes comic strip when Calvin cuts off all of his hair and Hobbes colors all of it in again with a yellow sharpie haha! I guess if I have to choose between an infection in my brain that will cause me to die, or losing my hair as potential side effects from the medications that I need, I will go with Losing my Hair for $600 Alex.
What if I am mean to you guys after my infusions? Get nasty with the very people who have been supporting me through all of this. I saw my dad ride the cortisone roller coaster from taking his oral steroids every day. I read this could be way worse, I really wasn't looking forward to that. We decided I would warn everyone in my house what was going on and try my best to hide from people until I feel more stable emotionally.
There were so many what ifs, so many scary ideas we tried to put in their place and hopefully they will leave me alone.
I ended our what if session with a doozy. What if I am bald, in a wheelchair at the Crossfit Games. The ultimate exhibition of fitness on earth. And there will be me looking like, well like some bald woman in a wheel chair. I got a little vaklempt when he said he would be so proud of me. All I could think of is what is there to be proud of? I can't do Crossfit anymore. My workouts each day are so simple, so basic. I am definitely not doing anything as impressive as these people do at the Games.
Or am I?
What is more impressive? Strutting around with my ass hanging out in booty shorts with no boobs like most Crossfit women who compete, or waking up each day, forcing myself out of bed, making my way down that scary flight of stairs and helping my girls get out the door to school with a good breakfast in them, and lunches made for their day, me starting their day with an I love you, have a good day and a kiss?
Is it more impressive, to choose to beat myself up physically just to say I can snatch, front squat, back squat or clean whatever heavy weight is prescribed for the workout, or beating myself up physically taking the scary drugs I am prescribed so I can be here for my family, and keep myself as healthy as can be given the circumstances? Who is stronger metaphorically speaking??
Is it more impressive to have the physical strength to endure a weekend of workouts to be crowned the "Fittest on Earth" or more impressive to manage through that weekend, being the biggest fan and supporter of my husband, making sure I am there for him just as much as he has been here for me since all of this started regardless of how I am feeling physically?
Isn't it more impressive to do all of the research I have done, learned what to do to help myself through diet, supplementation, and exercise so I can heal myself as much as I can before any medical intervention? More impressive and have the strength to admit that I have to adapt how I work out, with my fan blowing on me and ice water nearby so I cool down and continue working out so I can maintain what good health I have now? Or is it more impressive being able to crush a workout, you and your competitors being the picture of vitality and health. Who is truly showing their strength?
I suppose all of these who is stronger thoughts are there to show myself that I have a lot more going for me than Crossfit, more strength than what comes from cleaning or bench pressing and that is more important than being able to say I RX's a WOD when it comes right down to it.
I have to keep reminding myself I have the strength of 1000 Crossfit athletes when it comes to doing all I have to do each day, to live as normally as possible so I can be a good mom to my four girls, to take care of my 4 beasts, to be an awesome Nee to my Antknee. Most importantly, I carry myself through every day with the most hopeful attitude as possible to be the best wife I can be to my husband. The man who is standing beside me and making me feel like everything has a chance at being better than normal, even with all of this yuckiness surrounding me. Telling me this is an opportunity to change for the better and do things I have never done before, to look at this as the start of something good.
I always wanted to marry a prince who would make my dreams come true. At least my MS has shown me that I was lucky enough for that to happen. Hopefully he has a white horse too, I always wanted a horse as a pet, and I understand they do wonders as part of MS therapy.
And suddenly you know: it's time to start something new and trust the magic of new beginnings~Meister Eckhart
Thursday, May 18, 2017
You say Bellagio, I say Aubagio
Which ones do I pick I thought out loud to myself. I am looking lovingly at my collection of knee socks. If any of you have ever done Crossfit with me, you know how I love my knee socks. I have a pretty awesome collection. Unfortunately, due to things going on with me physically, I stopped going to the box, and subsequently stopped wearing my beautiful socks.
But I have been feeling steady enough to get my butt out in the garage and come up with some workouts to keep me sane until all of the medical stuff we have decided to do starts making me feel human again. So I went into my sacred drawer of sock. I whispered "hello beautiful" to all of them, missing wearing them and getting my sweat on. Today I decided it was time to break out a pair, and get my butt into the garage ASAP. I need working out to stay sane. I understand, through all of the research I have done, it will do wonders to help me now, while this disease is playing whack a mole in my brain.
See when I started Crossfit 5 years ago, and I know I said this in my last blog, I told the box owner I wanted to be in the best shape of my life in case MS decided to cause me problems. How prophetic those words turned out to be! But in hind sight it was a blessing that I got myself mentally and physically tough. I have needed it, and am going to need it more than ever I am afraid. I think I would look forward to doing the Memorial Day Murph more than what is in front of me, but doing the Murph all of these years has gotten me here and ready to tackle the challenges ahead.
We learned at my Neurologist visit yesterday that I actually have an active lesion going on in the right half of my brain, hence all of my left side issues now. A lesion the doctor said we had to tame immediately. When she started talking about cortisone I panicked. I saw what it did to my dad. I have been macro counting like a maniac and losing weight. Last thing I wanted was that big pie face dad would get. Or all of the weight gain. Oh the vanity issues. But the Neuro said I would have to be infused, three days in a row to get this under control. No oral steroids over a longer course would calm this down right now. Fabulous. Ok, I get three days of Solumedrol pumped through my veins. That's exciting. Then we moved on to long term treatment. I asked about the first line drugs, the ones that are supposed to be a little easier to tolerate. The side effects are supposed to be pretty mild. By mild I mean flu like symptoms for three months, stuff like that. Unfortunately, due to the scleratic lesions present on my Cervical spine, which my MRI showed so beautifully, she said she was concerned that my next active lesion would be on my spine, and in a place that would incapacitate me. Say again? Incapacitate me? She said of course we could try the injectable, first line drugs if I felt like that would be what I preferred to do, but she felt like one of the oral ones, due to the previous activity on my spine, would be where we should start. I countered with what about PML, that's the brain infection that leads to death? She pointed me to one in particular that doesn't have that risk. She took her time and answered any questions that I, or Brad, had. Great dialogue, didn't talk down to me, you could see she was impressed by my knowledge, and truly tried to be as informative as she could be without pushing me in any direction. She sent us home with information to go over and I had to call today with what I chose to be treated with.
Cue the stupid musical loop I created from the name of the medication. Aubagio. You say Bellagio, I say Aubagio. You say tomato, I say tomahto....let's call the whole thing off! Yes, let's do that. While I'm at it, I'd like a dog rescue to retire to too. If wishes were horses, beggars would ride right?
I am kind of at an angry phase presently through all of this. I stopped going on FB because you know what? I don't want to see people hitting their PRs at a WOD, or while lifting weights. I am too busy feeling sorry for myself to cheer you on. Can't you see I am miserable here?? I get even more pissed when I see someone bellyaching over something stupid. Are you worried about walking, or seeing, or feeling your feet? No? Then stop your complaining for the love of all that's good!! I hate seeing workouts that I would give my right arm (that's the one that is stronger too) to do, knowing right now (see trying to stay optimistic, because this is only temporary right?) that would be as impossible as me tight rope walking across the Grand Canyon.
I could write a whole blog over what every day is like. How I sneer at the stairs as I stand at the top one wondering when stairs got so scary to walk down. Or how I feel like I need a V8 most days. My favorite is when I feel like I am walking on ice AND need a V8. Makes walking so much more exciting. Most days my left leg feels like it's a tree trunk, heavy, wooden, and it doesn't like to pick up much. It's a good thing my left toes are so completely numb because I stub them quite a bit. I guess I didn't realize how numb my left side had gotten until my daughter said in total amazement, how are you touching that? She was referring to the noodle I just plucked off of a spoonful of them I had just taken out of the boiling pot of water to test their doneness. I thought what is she talking about? Until I burnt my tongue when I popped the damn thing in my mouth. Ohhhh, you mean the nuclear hot noodle? It's my super hero power don't you know. I'd rather be able to turn invisible.
Well enough of that. The infusion center called, I have to go the week of 5/31 and get my infusions done. Of course it is at the Bon Secours Cancer Center. So there was my kick in the ass to stop with my pity party and quit complaining. This could be so much worse. I know people so much worse off, I am truly blessed. It was my smack in the head, thanks I needed that moment.
Being blessed is a condition of the heart and a frame of mind~Erinn Rhorie
See when I started Crossfit 5 years ago, and I know I said this in my last blog, I told the box owner I wanted to be in the best shape of my life in case MS decided to cause me problems. How prophetic those words turned out to be! But in hind sight it was a blessing that I got myself mentally and physically tough. I have needed it, and am going to need it more than ever I am afraid. I think I would look forward to doing the Memorial Day Murph more than what is in front of me, but doing the Murph all of these years has gotten me here and ready to tackle the challenges ahead.
We learned at my Neurologist visit yesterday that I actually have an active lesion going on in the right half of my brain, hence all of my left side issues now. A lesion the doctor said we had to tame immediately. When she started talking about cortisone I panicked. I saw what it did to my dad. I have been macro counting like a maniac and losing weight. Last thing I wanted was that big pie face dad would get. Or all of the weight gain. Oh the vanity issues. But the Neuro said I would have to be infused, three days in a row to get this under control. No oral steroids over a longer course would calm this down right now. Fabulous. Ok, I get three days of Solumedrol pumped through my veins. That's exciting. Then we moved on to long term treatment. I asked about the first line drugs, the ones that are supposed to be a little easier to tolerate. The side effects are supposed to be pretty mild. By mild I mean flu like symptoms for three months, stuff like that. Unfortunately, due to the scleratic lesions present on my Cervical spine, which my MRI showed so beautifully, she said she was concerned that my next active lesion would be on my spine, and in a place that would incapacitate me. Say again? Incapacitate me? She said of course we could try the injectable, first line drugs if I felt like that would be what I preferred to do, but she felt like one of the oral ones, due to the previous activity on my spine, would be where we should start. I countered with what about PML, that's the brain infection that leads to death? She pointed me to one in particular that doesn't have that risk. She took her time and answered any questions that I, or Brad, had. Great dialogue, didn't talk down to me, you could see she was impressed by my knowledge, and truly tried to be as informative as she could be without pushing me in any direction. She sent us home with information to go over and I had to call today with what I chose to be treated with.
Cue the stupid musical loop I created from the name of the medication. Aubagio. You say Bellagio, I say Aubagio. You say tomato, I say tomahto....let's call the whole thing off! Yes, let's do that. While I'm at it, I'd like a dog rescue to retire to too. If wishes were horses, beggars would ride right?
I am kind of at an angry phase presently through all of this. I stopped going on FB because you know what? I don't want to see people hitting their PRs at a WOD, or while lifting weights. I am too busy feeling sorry for myself to cheer you on. Can't you see I am miserable here?? I get even more pissed when I see someone bellyaching over something stupid. Are you worried about walking, or seeing, or feeling your feet? No? Then stop your complaining for the love of all that's good!! I hate seeing workouts that I would give my right arm (that's the one that is stronger too) to do, knowing right now (see trying to stay optimistic, because this is only temporary right?) that would be as impossible as me tight rope walking across the Grand Canyon.
I could write a whole blog over what every day is like. How I sneer at the stairs as I stand at the top one wondering when stairs got so scary to walk down. Or how I feel like I need a V8 most days. My favorite is when I feel like I am walking on ice AND need a V8. Makes walking so much more exciting. Most days my left leg feels like it's a tree trunk, heavy, wooden, and it doesn't like to pick up much. It's a good thing my left toes are so completely numb because I stub them quite a bit. I guess I didn't realize how numb my left side had gotten until my daughter said in total amazement, how are you touching that? She was referring to the noodle I just plucked off of a spoonful of them I had just taken out of the boiling pot of water to test their doneness. I thought what is she talking about? Until I burnt my tongue when I popped the damn thing in my mouth. Ohhhh, you mean the nuclear hot noodle? It's my super hero power don't you know. I'd rather be able to turn invisible.
Well enough of that. The infusion center called, I have to go the week of 5/31 and get my infusions done. Of course it is at the Bon Secours Cancer Center. So there was my kick in the ass to stop with my pity party and quit complaining. This could be so much worse. I know people so much worse off, I am truly blessed. It was my smack in the head, thanks I needed that moment.
Being blessed is a condition of the heart and a frame of mind~Erinn Rhorie
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