Wednesday, September 10, 2014

2014 Invisible Illness Week

I have been so busy that I did not realize that it was Invisible Illness Week.  Luckily, Carolyn over at Heart Sisters posted her Invisible Illness Week post yesterday.  It came across my phone and I knew I had to do the Invisible Illness Week Meme again this year--30 Things About My Invisible Illness You May Not Know.

My heart attack was in October of 2011 and by the first Invisible Illness Week in September of 2012, I still thought this didn't apply to me.  It took a long time to really realize that this invisible illness week thing would actually apply to me.  I can clearly remember a nurse coming in and talking to me about managing heart disease before they moved me out of the CCU.  I know I looked at her like she had lost her mind because to me I'd had a heart attack, it didn't kill me so now I was better.  I had no idea what the diagnosis would mean for me in my life. I know now exactly what the diagnosis means and that it is, indeed, a lifetime invisible illness.

30 Things About My Invisible Illness You May Not Know


 1. The illness I live with is heart disease post widowmaker.

 2. I was diagnosed with it in the year 2011.

 3. But I had symptoms since: Looking back probably since I was pregnant the second time.  The horrible indigestion and the dentist thinking I was crazy constantly complaining of toothaches when I didn't have a dental issue I know now were early signs of heart issues.

 4. The biggest adjustment I’ve had to make is learning that I really am sick.  Sometimes I try to ignore that and that is really not the best idea I've ever had!

 5. Most people assume that because I don't look sick that my cardiac event was not very major.  It was major enough that only 20% of women survive the kind of heart attack I had.

6. The hardest part about mornings are remembering to take my medicine. This answer has not changed since last year! Even if I put them in a day of the week pill box, I still forget to take them, get halfway down the street on my way to work and have to turn around.  Just yesterday, I put some in my desk at work so I don't have to turn around.  It is hard to turn around when you are a mile from work and have driven 50-60 minutes to get there!

7. My favorite medical TV show is: Royal Pains

8. A gadget I couldn’t live without is my cell phone.  I do social media for the AHA KC Go Red Ambassadors.

9. The hardest part about nights are worrying that I won't wake up in the morning.  I cuss that first cardiologist who told me that if I had laid down to see if I felt better I would have never woken up.  I know he was well meaning and trying to stress to me that calling an ambulance was the reason I lived.  The result though, even three years later, is that I lay down to go to sleep sure my next cardiac event will be while I am asleep and I won't ever wake up.  I may have to break down and ask my cardiologist for some sleeping pills!  This has been the reality of nighttime every night for the last almost three years.

10. Each day I take 9  pills & vitamins.

11. Regarding alternative treatments I strongly believe they work great in conjunction with traditional medicine. I use both traditional and alternative treatments.

12. If I had to choose between an invisible illness or visible I would choose visible.  I can't remember what I said last year but this year I think visible would be better.  Sometimes when I don't take the stairs I can see the looks at the office.  Truth is, I never take the stairs on days I have chest pain.  I have words in my head for those that give me those looks and most of those words contain 4 letters.

13. Regarding working and career I kid myself most days.  I have a high stress job but I try to lie to myself and say it is not.  It affects my health because all stress affects your health.  I have started five days a week exercise --Zumba, Yoga, Pilates and Barre.  I can tell my stress is better controlled this way.  I am good at what I do and I love my job. This means I need to  control my stress  so my doc doesn't make me quit working.

14. People would be surprised to know that hmmm....I am a pretty open book so I am not sure there is much that surprises anyone.

15. The hardest thing to accept about my new reality has been that it is my new reality.  Most days I wouldn't give it back but some days I just want to forget that heart disease is my reality.

16. Something I never thought I could do with my illness that I did was speak publicly.  I guess I have more confidence about public speaking because I know the subject so well.  It is kind of hard to screw up your own story:)

17. The commercials about my illness have finally started to include women.  Yay!

18. Something I really miss doing since I was diagnosed is sleeping.

19. It was really hard to have to give up bad food.  I gave it up and lost some significant weight and then depression hit.  I gained it all back plus and now have to start the process over.  Giving up quick, processed really bad for me food has been harder the second time around.  Especially since my kitchen hates me (and trust me the feeling is mutual!) and I don't really spend any time in it.  I missed any form of domestic gene that most women get!

20. A new hobby I have taken up since my diagnosis is an old one--photography.  I went back to my hobbies when I realized I really do not have endless days to enjoy them. I love taking senior pics. This time of year in Kansas is amazing--sunflowers!  I am meeting two seniors at the fields on Sunday as well as one of my favorite co-workers for some family pics. This makes me smile.



21. If I could have one day of feeling normal again I would really cherish it and I would sleep:)

22. My illness has taught me that you should really live every day of your life--don't waste it and don't leave things unsaid.

23. Want to know a secret? One thing people say that gets under my skin is "I about had a heart attack."

24. But I love it when people ask me about what happened to me and ask me to educate them on signs and symptoms of heart attacks.

25. My favorite motto, scripture, quote that gets me through tough times is Stop Chasing Ordinary.

26. When someone is diagnosed I’d like to tell them to take their time and process what happened to them.

27. Something that has surprised me about living with an illness is that I am much stronger than I ever thought I could be.

28. The nicest thing someone did for me when I wasn’t feeling well was stay away.  I don't like visitors when I an not feeling well. I find having been in the CCU twice in  the last three years that the second time was better because I didn't have anyone in my hospital room.  The worst thing is to feel like you have to be awake to entertain visitors when you are really sick and if you are in the CCU, generally you are really sick.

29. I’m involved with Invisible Illness Week because it is a great exercise to remind myself of both the good and bad.

30. The fact that you read this list makes me feel the same as last year. It makes me feel like I lived for a reason.  I lived so I could educate all of you.   Please make me the voice in the back of your head when you think something like this can't happen to you. 

 

Tuesday, August 12, 2014

I Respectfully Disagree

I read a blog post today by Yoni Freedhoff, M.D.  He writes at Weighty Matters.  I enjoy his blog and I follow it regularly.  He is an obesity medicine doc and I normally agree with what he writes.  Today, he wrote a post about a video produced by the folks at Children's Healthcare of Atlanta titled "About that "Powerful" New Obesity Video Everyone's Sharing".  For your reference, here is the video:





He writes, "Presumably the point of the ad is to cause viewers with weight, and parents of kids who may be struggling, to feel sufficient guilt, shame and self-loathing that they finally decide to change their ways." While I completely agree that there is no value in guilting, shaming or causing self-loathing in obese children or their parents I'm not sure that this is the point of the video.

Admittedly the video is shocking, but as someone who suffered from healthy privilege as Carolyn Thomas at Heart Sisters writes in 'Healthy Privilege'-When You Just Can't Imagine Being Sick right up until I was sick, I have to argue that guilting children or their parents should not be seen as the point of this video.  Like it or not, in the USA (Dr. Freedhoff is from Canada and I can't speak for Canadians--Carolyn is from Canada too!) our culture responds to shock value.  When medical organizations or providers are trying to grab the attention of patients, they have to weigh what will be effective enough to start conversation.

As I watch this video, I see me and I see the way I fed my children.  Everyone likes to pretend that exactly what this video shows is really not that unhealthy.  It is the reality of the right now, on the run lifestyle of many Americans and they don't see any harm in it--what great danger this puts them in.  I used to partake in it and my heart attack was caused by nothing other than lifestyle.  Since I have had a heart attack, I have stopped feeding my family and myself like this.  We partake on rare occasion but now my once young children that used to only ask for chicken nuggets and fries are a few years older and they balk at the thought of McDonald's.  It makes them physically ill because we just rarely eat like this.  The effectiveness of this video lies in the fact that this walks backwards right through a life that causes obesity, heart disease, diabetes and cancer.  I know that people see themselves in this.  I did and and I am here to tell you from personal experience the operating table is right where they will end up and that is if they are lucky.  Sometimes they are not so lucky and it is the table in the morgue and not the OR  where they end up.  My hope is that a video like this  has strong enough shock value for at least one person that sees themselves in it to start a serious conversation with their doctor.

As I go out into the community here in Kansas City to educate, I understand the point of this video.   I keep in mind my thought process before I was sick--before I suffered a sudden, massive heart attack.  Despite my unhealthy lifestyle, you couldn't have talked to me about diabetes, cancer or heart disease and me think that those things would really ever happen to me. How arrogant is that? It is the struggle that goes through my mind as I am preparing to talk with women about heart disease.  What can I possibly say to them that will drive home the point that heart disease is the number one killer of women and have them think that it applies to them?  I'm not really sure but I am totally honest with them about my thought process before my heart attack.  I tell them that I was like them and that it is my greatest hope that they will understand that it can absolutely happen to them.

So, congratulations to the folks at Children's Healthcare of Atlanta.  It does not matter if you see this through the eyes of Dr. Freedhoff, through my eyes or have another opinion, they started a conversation and that is priceless.


Tuesday, July 22, 2014

Just What the Doctor Ordered

Just what the doctor ordered!  Two weeks of glorious this:



It is fablous! A fabulous chance to truly check out of work (which research says is the highest stress on my heart) and check out of Kansas (which after record lows will be over 100 degrees today--so for those of you that ask why Florida in July, it is not 100 degrees!).  When I check out of Kansas, I try to check out of heart patient.

I TRY to check out of  heart patient.  Even though I say to myself I am going to step out of it, eat what I want and not worry about my salt, cholesterol or such, the truth is that it is never far from my mind.  In everything I do, every day in life, it is never far.  I blame myself for some of this because I have chosen to educate other women and I have chosen to advocate for funds for research so some day other women do not have to worry about heart disease and stroke .  Some days when I am reading the grim statistics on my chances for a second heart attack, cardiac arrest or stroke because I have already suffered and survived the widowmaker, I wonder if it is worth my personal stress to be so outspoken. With all I know about the signs and symptoms, would I recognize and survive again?

On days when I wonder if it is worth my personal stress, I think of all of the amazing women I have met that are survivors too and I know that despite it all, I would not want to be without these ladies in my life--each one beautiful and amazing and with an equally intriguing story.  Each one of them knows my struggle---although you can pretend for two weeks, you will never be well and will always be a heart or stroke patient. 

My friend Jen, my heart sister (who I have never met other than online but hope to someday!) wrote a fabulous piece on finding well.  For those of you that read this that are sick, in someway chronically ill, I know you will appreciate this so I wanted to share!  From Jen --  Be Well.

Happy summer to you and I hope each and everyone of you find your two weeks of peace whatever that is to you!  Cheers!

Sunday, June 15, 2014

Heart Disease and Stroke Do Not Discriminate

What is the first symptom of heart disease? For many, it's death. 50% of men and 64% of women who have a fatal heart attack had no knowledge they had heart disease. 


I write this blog and  Tweet (@skinnybitchchro) and Facebook heart disease related information a lot for a reason.  It is so those of you reading this, those of you following me on Twitter and my friends on Facebook think of me when you feel symptoms.  So that I am the voice in the back of your head when you have chest pain that repeats "call an ambulance, call an ambulance, call an ambulance."  So that you are not part of the statistic above.  I did not know I had heart disease and lived because I called an ambulance.

Every time someone my age (45-50 age range) dies that my friends (also in this age range) know, I get a flood of messages about it.  It always makes me glad I survived and sad that person didn't-- sad for their families and sad for all the things that will never be. I always hope that peace finds the ones left behind.  More than that, I am glad that I am the person that always pops into the heads of those I know when they find out someone died of a heart attack.  The fact that so many will sit down and take the time to write me a note means that my purpose is clear.  I am most certainly here to educate and make some difference for those I know when (not if) they face heart disease.  To educate and turn it instead to if (not when) they face heart disease.

An acquaintance from my younger years just lost her husband who was 50 to a sudden massive heart attack.  I was not close to her and have not seen her in 30 years.  I have heard from many of our mutual friends today.  I have heard from many of them because he "looked healthy".  You do not have to look unhealthy to have heart disease.  You do not have to look unhealthy to have cancer, diabetes, lupus, MS or a whole host of other diseases.  Not everyone who is sick looks sick and not everyone knows they are sick. They think the same thing about themselves when they look in the mirror--"I don't look sick." This equates to "I am not at risk."  Just as they settle into that medical comfort zone, they are dead of a massive heart attack that leaves everyone else who thinks the same thing in a state of shock. Well, I didn't look sick either when I had a sudden massive heart attack. Now I have heart disease and I still don't look sick.

The fact that I did not look sick did not keep heart disease at bay--if it worked that way, we would have too many doctors.  The fact is, heart disease and stroke do not discriminate.  They don't care if you are young or old, fat or thin, marathon runner or couch potato.  They don't care if you are black, white, Latino, gay, straight, purple or green.  They don't care if you have a MD, PhD, JD, BS, MBA or not.  They don't care if you are married or single, have children or don't.

I do my part to try to impress this upon others.  Heart disease and stroke do not discriminate.  See your doctor (even if you are a doctor), know your numbers and educate yourselves.  You can look healthy today and be dead tomorrow.

Saturday, June 7, 2014

Spelling and Kitchen Misadventures

Holy misspelled words batman!  I posted a video of the Heart Walk and misspelled stroke.  That's right, this girl that loved English class posted a blog post for hundreds to see with Teri as as stoke survivor instead of stroke survivor. Not one single person that saw it sent me a message to let me know! How awesome is that?  Next time, someone send me a message and spare me! Not one to be able to ignore that, I have taken it down and here is the new and improved Heart and Stroke Walk recap including a few more pics. Thanks to Liz, Teri, Velda, Julie and Stacy for their pics and  I bought Katy Perry's Roar and Sara Bareilles's Brave from Amazon.com:
video


After the walk I posted a post on Facebook because I hung around just long enough to do an interview with KCTV 5.  This is what I posted:

"There is simply no way to look good for a KCTV5 survivor interview after being up since before 5 and being sweaty with hat hair after the walk!!"

Promptly, I had two friends that I treasure very much reply: 

" I dunno- I think "alive" is a pretty good look..."  and " I read this post earlier and couldn't text while driving to KC! I also instantly thought you being alive and here to tell your story will always make you beautiful! Even with hat hair and sweat! I've had to keep reminding myself when I look at my several scars and bald head that I'm so happy to be here and alive!!!I keep telling myself I won't complain about my hair again when I just get some... But we are women! We just don't like hat hair:) looks like it was a wonderful day of celebrating!"

Both of these responses provided perspective.  Sometimes even when you are chronically ill, you lose perspective.  The perspective that not much matters other than being alive.  I love these ladies for keeping it real. This is the perspective I needed to be reminded of, especially since the second response was from my high school friend that has been battling breast cancer. I really was happy to be able to share my story!

Last weekend after the walk, I decided I am not making that progress towards skinny bitch and if I intend to get there, it would be in my best interest to stop eating out and get back in the kitchen.  If you have been along for the ride since the beginning, you know what danger this puts me in.  That domestically challenged thing indeed reared its ugly head as I was chopping veggies. It reared its ugly head in the form of the knife right through my finger.  Now, this is bad enough normally but I take blood thinners.  The result of a sharp knife coming in deep contact with your finger while you are on blood thinners is that your kitchen ends up looking like a crime scene.  All I can say is at least the fire department did not have to come as well!  If you are wondering, I was making a very yummy vegan enchilada bake.  I left the cheese off to make it vegan.

Never one to be deterred, I am back at it in the kitchen again this weekend.  Now, to avoid the crime scene look, this is my solution:


Yes, that is right, the grocery store sells them already cut!  Now that does not keep me from the possibility of needing the fire department while I cook this weekend, but at least they won't think there is a murder as well as a fire if they have to come.

I am making the enchilada bake again and cutting up fruit--watermelon and cantaloupe. I may not be totally safe from the crime scene look or the ER:




I do realize that this knife might actually take a finger off, but it really is less risk than those smaller knives.  I am going to make a brisket for the rest of my carnivore family and put it in the oven. (Note the fire department risk) They can just take it out when they are hungry because mom is going with her girlfriends to this tomorrow night:

Nothing like those 80's gems from my teenage years:)  It will be a blast.

I hope you are all having a great weekend and I wish for you a weekend free of kitchen misadventures!









Saturday, May 24, 2014

I am NOT a runner!

I eluded a while back that I was going to take up running.  I went and got the shoes and started working running into my walking.  The truth is, I am not a runner.  I hate it.  There is not one single thing I enjoy about it and it makes me want to not exercise. 

I have great respect for those that enjoy running.   I have friends that love to run and enjoy the challenge of doing things like running marathons.  My friend Teri ran a marathon 26 days after her stroke.  I have immense respect for her.  (Read her story here) The thing is, if I am going 26.2 miles, I am getting in my new little Mini Cooper and driving.  By the way, I love that car!  Precisely why I would rather get in it and go 26.2 miles than run it. Jen at My Life In Red loves to run.  I love for her that she loves to run. My dad has always been a runner and now gets to run on the beach on a regular basis. My exercise on the beach?  Paddle boarding.  I just don't love to run.  I really did try to love it and I just don't.
 
Besides the fact that I really hate running, I have precisely 12 weeks to exercise outside in in Kansas.  I am not supposed to exercise outside when it is under 40 degrees (not an issue because I hate the cold) or over 80 degrees.  Why you ask?  Quite honestly I am not even sure because it is one of those things that was said to me when I was stunned. However, I believe it has to do with one of the medications that I take and not being able to now regulate body temperature effectively.  My coworker Donita and I walk for about four or five weeks every spring and fall over our lunch hours.  As soon as it gets close to that 80 degrees outside, I can really tell.  Walking takes a very hard toll on me the hotter it gets. We go from winter to summer and back again very quickly in Kansas!

So, I have chosen Zumba as my exercise of choice. My friend Jaclyn teaches it and introduced me to it. I can do this inside, it is a great time and doesn't really seem like exercise--much preferred over something I hate like running.  Exercise is good for your heart and we all need to take better care of our hearts. So whatever it is, find the thing you love and get moving!

From L to R at the Kansas City Heart and Stroke Ball
My friend Teri who loves to run, Christine, me, and Jaclyn that introduced me to Zumba!




Sunday, May 18, 2014

Modern Medicine or Western Lifestyle?

I have taken a bit off from writing.  Work has been busy, kids have been busy and life has been busy.

I am fortunate enough in life to still have some very long time friends.  Grade school, junior high and high school friends.  I met up with some of them last week.  My friend Beth was in from Colorado so it was a good excuse for the rest of us still in the area to get together. Paul and I moved in across from each other when we were six--39 years we have known each other.  Beth and I met in grade school band. Stacy and Brian and I met in junior high and Scott and I met in high school. So here sit the six of us at a restaurant, when it hits me how much our lives have changed.



First of all, no longer do we meet at a bar, we now meet at nice restaurants.  Our days of drinking it up are long gone! In case you didn't know, alcohol raises your blood pressure and I certainly do not need that.  As we catch up on each others lives, our conversation turns as it normally does to how my heart is doing.  It also turns to the fact that one of the other ladies has had a heart attack and one has fibromuscular dysplasia. As we discuss this, our conversation takes a turn.  We start discussing if the marvels of modern medicine is actually diagnosing disease earlier or is it that our lifestyles are causing disease to happen at an earlier age?

Certainly there are studies to support both.  Personally, I follow the thoughts of those like Dr. Caldwell Esselstyn and T. Colin Campbell  that say our Western diets are causing disease and killing us.  They support a no added oil plant based diet and write that we can use food as medicine. (before you wonder, I take a whole host of cardiac meds, so I do believe in mixing the two!) They support a view point that disease is happening earlier because of our lifestyles.  I happen to believe this as well.  I am certainly the poster child for this.  Now, practicing this in theory is very different than trying to do it in real life.  Even though I believe the plant based diet is the way to go, I don't eat like this.  Not because I don't want to but because I find it extremely difficult.  I rocked at it right up until I went to the cath lab the second time and then started suffering from depression.  Sugar has been my best friend through my depression.  I wrote about beating the depression and now I set out to detox from sugar.  I know if I don't, it will kill me. I struggle with it everyday.

I also think that the technology that exists in modern medicine makes it possible to diagnose disease much sooner in life and that this allows us to get the jump on treating it.  Awareness of the general public also plays a part in this.  Heart disease, once considered an old man's disease is now regularly being diagnosed in both women and men in their 40's.  People are more aware of heart disease and doctors are diagnosing it and treating it earlier.  Even though this is the case, it is still the number one killer of all Americans.  Once the exception, it is no longer surprising to hear that a woman has been  diagnosed with breast cancer in her 30's or 40's.  I have had friends fight breast cancer. The folks that fall into the camp that there is so much disease so much younger because of better detection have a point.

I think both sides have a good argument and the truth really falls somewhere between the two camps. I still fall a little more on the side of the Western lifestyle causing disease. My friends and I did not really draw any conclusions from our discussion.  We did get a good laugh out of how our lives and get togethers have changed over the years.  We also made a pact that we are not to put the length of friendship into actual years (as it is not possible any of us are old enough to have been friends for XX number of years!) rather we just say lifelong:)