Posts Tagged ‘Health’

Confession Time…..Friday Morning

January 22, 2010

I woke up so tired and sore. I can feel my legs starting to shut down. I can feel I’ve put too much stress on my heart, fluid is backing up in my chest like there is a running facet inside there. And I feel like the most selfish, vain bitch for even feeling this way. I guess maybe by writing it I’m not saying it out loud, as if that makes this any better. I don’t have the right to complain. Drew can’t feel his legs, can’t move his legs. I’m trying so hard to help with moving him in/out of his wheelchair, getting him dressed and I feel like this weakling. As I blow dry my hair I can’t stop my eyes from watering up. I don’t want Drew to see me crying. I’m sitting here frustrated because my legs are tired and my heart is exhausted. And Drew is in a wheelchair.

Just as I am about to hit rock bottom from the guilt of feeling sorry for myself Drew starts laughing. He’s watching some of the video I took last night at his party. That smile lights up my heart. That laugh lets my body know it will be okay, it can make it. Despite the bruises, the aches, the pains – I will be okay. If he can have the strength to survive on an icy road, I can muster up the strength to continue doing this.

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Confession Time….

January 21, 2010

I can’t get the conversation I had with Melissa at the bar Tuesday night out of my mind. I’ve heard Drew tell his story of what little he remembers happened, and what people told him happened; but to not only hear her words – to see the fear still in her eyes at the thought of losing her brother. It really has moved me. They say when you have children you experience a love unlike no other, true unconditional love. I would match that with the heartfelt words that came from Melissa’s mouth. She truly would, will and did move mountains to help Drew, to make his life a little easier, to get him anything he needs, to put a smile on his face. If you could see the fierceness in her eyes when it comes to her brother, you would understand. She was not going to lose her brother, not then and not now. He is her heart. Makes me wonder who in my life would fight that hard for me? I know two – my mother and my father. Drew and Melissa have a very special relationship, a special connection. Almost makes me jealous that I don’t have that same type of bond and relationship with my brother and sister.

People have often said to me that if they were in my situation they don’t feel they would survive or be able to fight. I kindly would reply with you just never know how you will react until put in the situation, that often times you will surprise even yourself. I am the one now saying those words – I don’t think I am strong enough to survive what he has. I don’t think I would have held on 16 hours on an iced over road with the desire to live like he did. And I definitely don’t think I would have the will to continue pushing down walls when just about every one of my personal abilities was taken away from me. What makes me so ashamed now, is that this time last year I was on here ranting about how I couldn’t go sky diving or go to my dance class because my stupid little heart went into failure.

I have no reason to complain when I am with Drew. You have no reason to complain. Having Drew in my life, knowing him, spending time with him – makes me a better person. Now I just need to get the rest of the world to know him…..

A Scary Moment

January 20, 2010

So… tonight something really scared the shit out of me. Drew woke up in the middle of the night and was trying to get mine or Melissa’s attention. When I finally came out of my sleep fog to realize what was going on, Melissa had it all taken care of and was laying back down. He needed the blankets adjusted. While some of you may not think that is a big deal, it is to him. If the blankets weigh too heavily on his feet, they can create sores on his toes. What scared me soo badly was what if I hadn’t woken up? What if it was just me in the room and he couldn’t get my attention? A fear pierced thru my body…. Is this some kind of sign – like a sign that I won’t be a good mother one day?

Alone

January 20, 2010

I actually wrote this Tuesday night, just didn’t have time to post it….

Drew wanted a little alone time tonight to decompress, so Melissa and I went to the bar for a few drinks. A very harsh reality set in with me. Drew can’t go to sleep until we come back to the room. He can’t just say, “Okay, I’ve had enough for today” and call it an early night. Just about every move he makes depends on someone else. When’s the last time you laid down to take a nap? Remember how good that felt? Well, next time remember that nap is a LUXURY you take for granted everytime you lay your precious little head on that pillow. And what about that night you spent tossing and turning because you couldn’t sleep. You probably woke up the next day complaining about the bad night’s sleep you had. I know I have! The ability to toss and turn in your sleep is another LUXURY you take for granted.

As I’m writing this, Drew calls out for me – Did he take his night medicine? I can’t tell you how many times I’ve forgotten to take my medicine. But here’s the difference – I forget, I get up out of bed, go to my bathroom and take my medicine. He can’t. Someone has to put the pills in his mouth. I’m not writing this for you to feel sorry for him. Trust me, that is the LAST thing Drew wants. I’m writing this because of the basic functions we have in everyday life that all os us take for granted. And while he is literally busting his ass so that he’s not just another number on disability, working every breathing moment he has to make something out of himself so that people don’t see him as Drew the quad but Drew the brilliant artist, CNN is reporting about what message Michelle Obama’s fashion choices are sending America!! Really?? Are you serious?? Seems like we need to get our priorities straight. Maybe CNN needs some time alone to decompress!!!

Reality

January 18, 2010

We went to go visit a friend of Drew’s that lives by Hollywood Blvd. He lives upstairs and the elevator there is one of those old ones that you open the door and pull back the gate. Cute for those old timey apartments. But not so cute when your wheelchair won’t fit in it. I’ll admit it really has been awhile since I’ve faced issues like these for me. It makes me want to fight to get building codes changed and immediately go into pitbull mode. Maybe that’s just the bitch in me, or the over-protective friend. Drew just laughs it off and gives LA credit for being very handicap accessible, even more so than other cities in America. I’ll admit, he’s a lot more forgiving than me.

So while he is visiting with his friend Melissa and I are walking around outside. On Hollywood Blvd are several of the “stars”. Out of habit I take a picture or two. Right as I’m doing that, this guy walks out of Popeyes and laughs at me. “You must be a tourist.” Trying to hide my very obvious southern accent, I give him a cold “Eat Shit” look and explain that no I am not a tourist, I’m simply trying to get footage for a documentary. As soon as he turns the corner, I grab Melissa to take my picture under the Hollywood sign. Am I that transparent? I really hope not. Otherwise my reality is that I will get eaten up alive out here.

Operation: Blow Up Heart!!

September 8, 2009

Everyone has a little bit of a rebel in them, right? Everyone likes to push the limits every now and then to see how far they can go or how much they can get away with. I think that over the last couple of weeks I was on a mission – I called it Operation Blow Up My Heart. Now don’t take this the wrong way, this was by no means some type of suicide mission. This was me just trying to see how far I could push things.

My life is operated around all of these rules and restrictions I have to abide by. I can’t just eat whatever I want. Not because I’m worried about gaining weight, I’m worried about the impact on my heart. My freestyle life as I knew changed when I was 20 and diagnosed with MS. Over the years, I figured out my boundaries and how close I could get to those electric fences before I got shocked. And for the most part, I could operate as freely as I wanted to….. Then last December my freestyle life as I knew came to a complete halt. At the beginning it was simply trying to adjust to every punch and stone being thrown at me. Then it was following those rules, regulations, restrictions as closely disciplined as if I were in the military. I changed my strategy to being a little more lenient, so I could have a “little fun” and tested the waters that way. Throughout all of this, we saw my heart improve, get worse, get a little better, take a serious dive south, then start to jump back up. I tried things my doctor’s way, and they didn’t exactly work. I tried things my way, and they didn’t exactly work. I needed to find a new ground. I needed to shake things up a little bit!! I needed to find a little spice!!

You know those commercials where someone is trying to make a decision and you have the angel on one shoulder telling you to be good and the devil on the other shoulder telling you to be bad. Well, I put that bandana around my head, ripped holes in my jeans, hopped on a Harley and decide to defy everything!! (Okay, not really, I’m actually scared of motorcycles…. but you get the point). I decided to be a rebel. To just do, eat, drink, act however I wanted to; despite what my doctors orders were. I wanted to see just how far I could push this heart. I wanted to see what my limits were. I was TIRED of being scared of everything that “could” go wrong….. I wanted to see if we could blow up my heart!

I’m sure if my doctor is reading this then he’ll have a heart attack himself. I’m a firm believer that you have to take responsibility for your actions. I’m an adult, I knew what I was doing and trust me, I paid for my rebellious stage! I was pretty much bedridden, not able to breathe or move for about three days.

But my mission was successful. If you don’t make mistakes, you’ll never learn. And if you don’t learn from your mistakes, you’ll never grow in this life. I write this particular blog not to scare people. But so that you understand I am human too. I get angry. I get scared. I want to push the limits and see what I can and can’t get away with. That no matter if it’s MS or Heart Failure, you don’t wake up everyday as a fighter and that health advocate that does the right thing. Its a conscious choice I have to make, everyday. And somedays, I chose to be a rebel.

So….. why do I feel my mission was successful? Well, I have a new found desire to be that health advocate for myself. It’s like the person who diets all the time and just wants to eat a piece of chocolate cake every now and then. I know more of what my limits and boundaries are, not that I need or should push myself there all the time. But it helped take away some of my fear of “what could happen if….”. (I still have this with many aspects of my heart, but we were able to knock a few off the list). And lastly, as long as there is ORANGE blood running through these veins, there isn’t anything that will kill this heart!!!

Need to Breathe…

August 22, 2009

I always thought it was just the name to a really cool band my nephew introduced me to. But lately it feels like the overriding theme of my life. I just need to breathe. I need a chance to catch my breath.

“Let the drumbeats wash you over
Let the songs come and take you under
Push the life that brought you here away from you tonight
There’s a place where the pain can’t touch ya
And there’s a fire where the heat won’t burn ya
It’s in the sound of your voice tonight singing in one song ”
(The Heat: needtobreathe)

I need for the sodium to let up so the fluid will stay out of my chest – I need to breathe.
I need the medical bills to stop coming everytime I open my mailbox so I’m not gasping at how I’m going to pay for these – I need to breathe.
I need my insurance to just please give me a f*%&ing break so the meds I HAVE to HAVE are not another stupid mortgage payment every month, I need these meds to breathe.
I need for my heart to understand this train that has railroaded it emotionally so it doesn’t keep making me lose my breath – I need to breathe.

This time is just a season,
You deserve much more.
Lift up your head,
Look out the window,
Cause it’s almost over now,
Take back the time that your fear has stolen.
Cause it’s almost over now.”
(Over Now:needtobreathe)

I need the weight of the world taken off my shoulders so maybe I can get some rest – I need to breathe.
I want to find that place that love never dies, because it does take my breath away – I need to breathe.
I need for the tears to stop flowing, it makes my nose get all stopped up – and I need to breathe.
I need for my heart to stop aching over something that is obviously never going to change and let it go – I need to breathe.

Love is just like a war we can’t win
We can give, we can give, we can give
When we stand in the face of the world falling down
In your hands you hold the pen
What’s your answer for the end

When there’s nothing that we can’t afford to sacrifice
There’s no way they can put out your fire
There’s no way they can put out my fire
Oh, Oh, I’ve got nothing left
Nothing left to lose
” (Nothing Left to Loose: needtobreathe)

Cause we are alive
We are strong
We can’t watch it go for nothing
Watch until it’s gone
And we are down
But we can choose
We’ve got nothing else to live for
Nothing left to lose

Can God give me the direction of where I am supposed to go??? Because this uncertainty gives me great pains in my chest – and I need to breathe.

“Because I’m down
Down on my knees
Waiting on something beautiful……”
  (Something Beautiful:needtobreathe)

I need a couple of days of vacation from reality where I can feel normal and not worry about the repercussions on my heart and my legs. I just need to breathe.
I need to let the top down speeding down the interstate like Thelma & Louise – because I need to breathe.
I need to know how to let go of the recent issues/struggles that are paralyzing me – since I’m not allowed to jump out of a plane again, and I have to let go….I need to breathe.
I need the assurance that my life up to this point hasn’t been one big failure. Because it kinda feels that way right now – and I need to breathe.

“I can’t help but fear I’ve done this wrong
Cause seldom second chances come along
If time can break us, will it make us strong
Cause seldom second chances come along”
  (Seond Chances: need to breathe)

Maybe I need to learn how to ask for help, because I’m worn out… and I need to breathe.
I need someone to stand beside me no matter what when I fall. Because sometimes when it gets hard to breathe, it gets harder and harder to pick myself up off the ground.
I need to find the fighting spirit inside of me again, because I’m tired of being the warrior – and I need to breathe.

I need to dance… like I need to breathe.

Somewhere between the end, And the point where we begin
There’s a fire burning brightly, That’s found it’s way to dim
When the feeling’s gone
Shine on, shine on
And on to something new, It’s long and overdue
I will remember you
Shine on, shine on
And let the others see, You’ve got your victory
Will you remember me, I was with you in the valley
And up upon that hill, So take just one more step infromt of you
For I am with you still, And you’re not alone
Shine on, shine on
and on to something new, It’s long and overdue
I will remember you
Shine on, shine on
And let the others see, You’ve got your victory
Will you remember me
Can you see my hands are open, I am waiting just ahead
And you think you need it all now, But you needed me instead
Shine on, shine on
Shine, oh shine on
Won’t you, won’t you shine
Shine on, shine on
Somewhere between the end
And the point where we began…”
(Shine On: needtobreathe)

All Fired Up

August 9, 2009

So… I have to say it took a couple of days to cool off from this to be able to write without every other word being a curse word. I was told the statement, “MS sounds an awful lot like BS!!!”

ARE YOU KIDDING ME? ARE YOU BEING SERIOUS???? Could you honestly be any more insulting to me?

Living with my eyes closed, goin day to day
I never knew the difference, I never cared either way
(Pat Benetar, All Fired Up)

Before being diagnosed with MS, I did take so much for granted. Everyday luxeries that can be such a challenge for me now. MS changed my life forever on how I view the world, the luxeries I thank God I can do when I can do them!

So, everytime I lost my ability to walk and needed the assistance of my cane or walker – that’s BS?
Everytime I have a seizure that makes me flop like a fish out of water – that’s BS?
Everytime I lose feeling in my hands and my arms and I can’t feed myself – that’s BS?
Needing hand controls in my car because from day to day we never knew if I would be able to walk – that’s BS?
Having my doctor sit on my hospital bed and tell me he didn’t know if I would ever walk again – that’s BS?
Three years of chemotherapy that has now put my heart into failure – that’s BS?

Ain’t nobody livin, in a perfect world
Everybody’s out there, cryin to be heard
Now I got a new fire, burnin’ in my eyes
Lightin up the darkness, movin like a meterorite

I’ll tell you what is BS – your medical opinion on this matter. And if you think this is the last you will hear of this, you have another thing coming. I am all fired up over this! You can call me BS all you want to, but back off of the other 400,000 people diagnosed in the US with MS.

That’s right, did you know that approximately 400,000 Americans have MS? Every week about 200 people are diagnosed and worldwide MS affects about 2.5 million people. So all of this is BS??? There are 4 types of MS. Before disease-modifying drugs became available, 50% of people with relapsing-remitting MS (which is what I have) developed secondary-progressive MS within 10 years. So, scientist came up with BS meds to stop the progression of a BS disease, is that what you’re still telling me???

The MS Society was founded in 1946. Across the country there are over 460,000 volunteers. So all of these people are volunteering for a disease that is just BS, they’re just wasting their time??? In 2007, the Society’s total revenue was $241 million. Are you calling that kind of money BS? There were over 100,000 cyclist that rode in over 100 MS Bike Tour rides across the country. And I was one of those cyclists – so all of this is BS????

All Fired Up
Now I believe there comes a time
All Fired Up
When everything just falls in line
All Fired Up
We live and learn from our mistakes
All Fired Up
The deepest cuts are healed by faith

I hope you learn from the mistake of calling this disease BS. It is anything but. It is a serious, debilitating disease that you wouldn’t begin to know how to handle. And as much as this disease may cripple me, it’s not near as crippling as your ignorance is to you. Keep that in mind next time you want to try and pick on me or one of my kind. And let this be fair warning, you make a comment like that again, you will be checked – fast. Because you’ve got me all fired up, and I’m not backing down!

It’s The Heart That Matters Most

August 6, 2009

I guess you can say I am about to get on my soapbox about taking care of your heart. It’s especially important since this morning I sat at the hospital gasping for air. It was yet another reminder of how vitally important your heart is, and how crucial it is to take care of it. But you want to know the ironic thing, it wasn’t my heart’s function that I was worried about the most. As I struggled to breathe I was most worried about those close to me that I so dearly love – I didn’t want them to be scared or to worry about me. There is a reason why I’m the Comeback Kid, there’s a reason why my nickname is Wyatt Earp. I knew I would be okay. I knew no matter what happened today, I would get through this. I say it’s ironic becaise in the past I’ve been so worried and focused on my heart, on my MS, on ME. And that just wasn’t the first thought that entered my head today.

So, this post is all about a few updates and information that could be vital for your heart!!

1. We need your help!! Please sign this petition asking President Obama to consider a dramatic increase in funding for heart disease and stroke research, treatment and prevention programs as he develops his budget. Heart disease is the #1 KILLER of both men and women, killing more every year than all the cancers combined. Yet, very little money is put towards research and development that could save our lives.
Here is the link to sign the petition –> http://www.researchsaveslives.org/takeaction.aspx

2. Do you know what to do if someone around you goes into cardiac arrest??? The very life you could save could be your own!! “AEDs can save the life of someone who is in cardiac arrest. So in what public spots should they be placed for maximum benefit?” Follow the link to the full story. Do you know where your closest AED is located? –>http://health.usnews.com/articles/health/healthday/2009/07/29/put-defibrillators-in-high-traffic-spots-studies.html

3. This is for all of you Iphone users…. Are you ready to save the life of someone you love? 80% of sudden cardiac arrest victims collapse at home. The American Heart Association’s new “Pocket First Aid & CPR Guide” iPhone application offers up-to-date, easily-accessible emergency information at the touch of a button. –> http://www.heart.org/presenter.jhtml?identifier=3067191

4. Anyone that has kids knows that it’s not always easy to get them to eat healthy. Get them involved in your family meals and let them try the 10 “kid-friendly,” hands-on recipes in the American Heart Association Healthy Family Meals, a new cookbook with more than 150 recipes the whole family will love. –> http://www.americanheart.org/presenter.jhtml?identifier=3067670.

5. For nearly a century, cardiovascular diseases have been responsible for more deaths in the United States than any other cause, claiming a life every 37 seconds. You can make a difference. Help us create a world free of heart disease and stroke. We can do it with your help –> https://donate.americanheart.org/ecommerce/aha/aha_index.jsp?campaignId=77

6. News Flash… AHA journal says “Health risks begin in overweight range, BMI doesn’t tell whole story”. Read the whole story here –> http://americanheart.mediaroom.com/index.php?s=43&item=748

7. The weather’s getting warmer- perfect time for outdoor activities. What’s your favorite way to be phsyically active? Remember, brisk walking for at least 10 minutes each day can positively impact your heart health! Walking is supposed to be one of the best forms of exercise. Follow this link and find out which walking paths are closest to you! –> http://www.startwalkingnow.org

8. You can makeover your heart and become a BetterU. Join me in this 12-week program –> http://www.goredforwomen.org/

Don’t wait until it’s too late to do something about your heart. Don’t wait until the time comes that EVERY decision you make directly effects your heart. Don’t wait until the time comes that you worry everyday of if your heart will function on it’s own. Be proactive and set your heart up for success. You only get one heart in this life. The heart is the most important organ in your body, it’s the heart that matters most. So take care of it!

You Can’t Hold Me Down

August 4, 2009

So, a couple of weeks ago the MS Society called me to see if the Legs for Lindsey Bike Team would be riding again this year. I painfully told them no. It was especially hard because the day they called I had just gotten my bike set up on the windtrainer and rode for the first time since my heart went kapoot. It was a reminder of how much I took for granted. I thought that was a hard lesson I learned with MS, but the heart took away a whole different set of skills, abilities, luxuries that I took/take for granted on a daily basis. In December when they told me I had heart failure, one of the doctors laughed when I asked is I could run again. He said I would never run a marathon ever again. (I must note here that before Dec I hadn’t ever run a marathon, but it’s always been one of my life goals.)

Anyone that knows me, or hell, even reads this blog knows that I don’t take the word never very lightly. So, how about this, I’ll see your 26 miles and raise you 150!! Legs for Lindsey may not be on the road for this year’s MS Bike Tour, but we will be next year. I already have a training program laid out that works within the confines of my heart limits. I’m back on my bike and in time will be riding the distances I need to make those 150!!!

Lance has come back this year and so can I. I won’t let you hold me DOWN!! Oh, and let me be clear here, I’m finally being smart about how I am fighting this, so don’t think I just hopped on the bike and road 50 miles.

“Down, you can’t hold me down
Cause when no one is around
I won’t be standing here
Just waiting for you to come back home again
Down, you can’t hold me down
Because I finally understand
That what you did is
Not so bad in fact it’s better for me”
– Down by: Safety Suit

So, heart failure, as far as I’m concerned I hope when you see my face it gives you hell! Instead of punching you this time, I’ll just ride over you!! I’ll see you on the hills!!!!!