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
Friday, May 26, 2017
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
Friday, May 12, 2017
When Life Gives You Lemons, Make Lemonade~Elbert Hubbard
When life gives you lemons, make lemonade is how the quote goes, first uttered in 1915 if my research is true.
I know some people have been wondering what's up with me. Life has been a little unsettling lately. I am staring MS squarely in the eye, dealing with some of the stuff that it can bring, but not letting it get the better of me, although some days I feel like it is trying.
Let's rewind however many years ago it was when I suddenly couldn't see out of my right eye anymore. I always likened it to wearing sunglasses, really dark ones, on just my right eye. I made an appointment with an ophthalmologist pretty quickly who asked me a myriad of questions, are you tired? Well yeah I was the mom of a two year old and worked full time so yeah, I'm tired. Do you have any tingling in your arms or legs? I did have some on my right side when I thought of it, but I had a desk job and just thought my leg and foot were falling sleep a lot. Do you have any numbness? No, why do you ask? Why are you asking me all of these questions? The Dr. said he suspected I had optic neuritis and that didn't typically occur on it's own but seen frequently with people who have MS. He sent me for an MRI. I can remember when they snapped this helmet looking thing over my head and being pushed in a dark tube. I can remember music playing over the loud banging noises. Rod Stewart's gravelly voice crooned, If I listen long enough to you, I'd find a way to believe that it's all true....I can still hear it in my mind's eye. or ear as it were lol!
Anyway, I had to wait like a week (this was about 25 years ago, the Stone Age for technology like MRIs I guess) for the results and I remember calling my doctor for them. He just so happened to be away on vacation for the next two weeks but his receptionist assured me his associate would be happy to review my results and let me know what they were, hold please. Nice doctor, picks up, introduces himself to me and I can hear him rustling through my file (yes, they still used paper files back in my day) and making small talk. Oh I see you have optic neuritis, you went for your MRI last weekand it says here-----how quickly can you come in to our office? I'd rather discuss these results with you in person was the next thing I heard. I felt like I just went down the drop on the Terminator when he said that.
I know some people have been wondering what's up with me. Life has been a little unsettling lately. I am staring MS squarely in the eye, dealing with some of the stuff that it can bring, but not letting it get the better of me, although some days I feel like it is trying.
Let's rewind however many years ago it was when I suddenly couldn't see out of my right eye anymore. I always likened it to wearing sunglasses, really dark ones, on just my right eye. I made an appointment with an ophthalmologist pretty quickly who asked me a myriad of questions, are you tired? Well yeah I was the mom of a two year old and worked full time so yeah, I'm tired. Do you have any tingling in your arms or legs? I did have some on my right side when I thought of it, but I had a desk job and just thought my leg and foot were falling sleep a lot. Do you have any numbness? No, why do you ask? Why are you asking me all of these questions? The Dr. said he suspected I had optic neuritis and that didn't typically occur on it's own but seen frequently with people who have MS. He sent me for an MRI. I can remember when they snapped this helmet looking thing over my head and being pushed in a dark tube. I can remember music playing over the loud banging noises. Rod Stewart's gravelly voice crooned, If I listen long enough to you, I'd find a way to believe that it's all true....I can still hear it in my mind's eye. or ear as it were lol!
Anyway, I had to wait like a week (this was about 25 years ago, the Stone Age for technology like MRIs I guess) for the results and I remember calling my doctor for them. He just so happened to be away on vacation for the next two weeks but his receptionist assured me his associate would be happy to review my results and let me know what they were, hold please. Nice doctor, picks up, introduces himself to me and I can hear him rustling through my file (yes, they still used paper files back in my day) and making small talk. Oh I see you have optic neuritis, you went for your MRI last weekand it says here-----how quickly can you come in to our office? I'd rather discuss these results with you in person was the next thing I heard. I felt like I just went down the drop on the Terminator when he said that.
I knew what he was going to tell me. So I ask my boss if I could leave, tears all welled up in my eyes. The only thing I knew about MS was what I saw in grade school when we would do fundraisers for the MS Society. I was going to be in a wheelchair, I was going to be an invalid. After I saw my pseudo-opthamologist with my mom in tow because Brad was stuck at work, he said if I was his daughter? He'd have his family practitioner do a total physical, see if there could be anything else going on. MS doesn't have a test to determine if you have it but rather a battery of tests ruling out anything else it could be. I asked him one question, am I going to die? He said we are all going to die, but from MS, the likelihood was no. Ok, I relaxed just a little.
When life gives you lemons, squirt someone in the eye ~ Cathy Guisewite
I swear I was blindsided. How could this be happening to me? I'm young, have a toddler. When Brad finally got home of course he was upset. We tried to make sense of things we had no idea how to understand so we did the only thing you could do to obtain knowledge before the internet; we headed straight to the library. Yes, a library. Complete with the card catalogue (that always excited me when I was little and had to use it) does anyone else remember the dewey decimal system lol, and us photocopying information from books that we found on the subject. I felt a little better when I read it didn't necessarily mean I wouldn't be able to walk or I wouldn't be able to see out of that eye properly again.
I did make an appointment with the best neurologist for MS in our area after seeing our family practitioner. He said it appeared I did have MS from "the scleratic lesions on the white matter of my brain" they saw in my MRI plus all of the other tests they did. We weren't going to treat anything just yet. The only thing available at the time was steroids and seeing what they did to my dad I wasn't too keen on taking them to be honest. He also said he wasn't going to officially diagnose me until I had another exacerbation somewhere else in my body for insurance purposes. He didn't want me to get denied with a pre-existing condition. Why thank you kind sir. I appreciated that.
It took about six months and my vision returned. No meds needed, my body healed itself. I was done being angry at the body I felt betrayed me. I started making a bucket list of things I wanted to do though. Being diagnosed with a potentially debilitating disease will do that to ya I guess.
When life gives you lemons, chunk it right back ~ Bill Watterson
A lot of life has happened for us since. I won't bore you with all of the details, just the highlights and some bucket list items thrown in. Let's see there were three more kids, two new houses, countless foster beasts, how many businesses that ended up with us owning the Ice Zone and SkateNation Plus, plus now 321 Fitness (that's our Bodpod) ooooo and a grandson as the cherry on top. There were sprint triathlons, Olympic distance triathlons (NYC Tri being my favorite) culminating with me doing Ironman Florida. Let's toss in a myriad of 5Ks, 10K's, 10 Milers and Marathons. And who could forget my swim from Alcatraz?? Or how I had been keeping it real with Crossfit the last five or so years after I got burnt out from triathlon training. I can remember speaking to the Owner of our Box before I started and telling him I had MS. That I wanted to do Crossfit in case, God Forbid, it decided to rear it's ugly head. I wanted to be in the best shape of my life to tackle it head on. I toned my body, got it strong, got myself mentally tough. I laughed at doing 160 pound back squats, rep 205 for my deadlifts, clean and jerk 110? Still laughing, this is awesome. Watch me bench press 130 pounds no problem. Toes to bar, yes please, I could do pull ups, I wanted to do muscle ups some day, I could row like a beast, run like a beast watch me crush a wod, a hero workout. I loved it. Still laughing. MS be damned, look at what I am doing!!!
And then, it happened and I stopped laughing.
I dropped a bar going overhead on a lift and damn near crushed my head. What was with my left hand? Running? Why is my left leg dragging? Box jumps? Nope, I almost killed myself the last time I tried them. Lunges, I am tipping over, never mind doing them with any kind of weight. Yeah, I tried to modify my workouts, but things kept getting more and more difficult to do. I couldn't stand after a hard work out, friends and Brad would bring me ice and ice water to help cool me off so I could move. Anything that required balance was out of the question. I remember the last workout that I had modified and struggled through so I could do it, and someone commenting on how they admired me for still trying to work out. That was it, game over. I have worked out in my garage ever since. Don't need your pity. I am ok, and will be ok, my mantra being fore front in my mind--there is still a ton I can do, there is still a ton I can do. I was strong AF, I don't want anyone's admiration for struggling through a workout. I want to lift, run, box jump, burpee like I used to. I can still do a lot. A lot more than many so I guess I need to suck it up buttercup.
Let's skip that record needle one more time to now, and why I am inviting you all at this peek into my life with MS. It is happening, that next exacerbation that I thought I had outfoxed, out maneuvered, out run, out Crossfitted? It looks like it is here. Or might be. Otherwise my feet are numb for no reason. Or my legs feel like lead for no reason, or I am dizzy to the point I will not let myself drive right now for no reason. Or I have this awful brain fog for no reason. Or I am so exhausted by the end of the day, I mean bone crushing lassitude, for no reason. Misery loves company, so come join me hahaha!! Actually, that's not it, because I am honestly not miserable. Frustrated maybe, miserable not so much. Like my breast cancer scare I have decided to blog what's going on. It was cathartic for me to blog through it, so I guess I am trying to cope one of the best ways I know how.
I went for an MRI again, this time I had the help of Ativan to keep me from freaking out after they immobilized my head and kept it from moving and stuffed me in the tube for an hour. I had the most pleasant dreams, one was my dad was rubbing my feet and telling me I was ok and not freak out, the other was my dogs were talking to me lol. Kind of made me sad when my dogs started talking because then I realized my dad wasn't really there and it was all a dream, or was it, but that's a blog for another day.
I have a follow up with my neurologist Wednesday. Hopefully to discuss treatment options? I am at the modern day version of a library as I type (the internet is a blessing and a curse for real) and have been educating myself as much as I can about the drugs there are to treat MS now. Grateful there are choices. More than just prednisone, but they all come with a hefty list of side effects, none of which are too pleasant. Yes, I'll take one brain infection that almost always causes death for the win!
I know, like my breast cancer scare, that this is going to be ok. I've got my family by my side, Brad not letting things be anything other than ok. Choices of medications, and a lot of determination to get back to Crossfit and the rest of the things in my life that make me happy. Ain't nobody got time for this...
“I believe when life gives you lemons, you should make lemonade…and try to find someone whose life has given them vodka, and have a party.” ~Ron White
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