THIS Woman's Work

"It is health that is real wealth & not pieces of gold & silver."

~Gandhi

(Read the post before you watch this so you'll have a better understanding)

Okay, so I must admit, I have a "theme song" for myself. It wasn't actually written for me or anything but it's just a very beautiful, very pretty song. I don't feel sorry for myself but I do realize that I have been through more than most 29 year olds... hell, most 80 year olds, EVER will in their lifetime. There are times I do get angry & upset & of course, from time to time, I can't help but thinking to myself, "Why me?". But, then again, I realize, "Why not me?". My doctors believe I contracted it at a keg party that was held a couple of days before I went into the hospital. There were at least 50 people at this party, probably more, so I'm sure most people can understand why from time to time I can't help but think, "Out of everyone at that damn party, why was I the "lucky" one?". I just thank God that after I got infected, I didn't pass it on to my best friend or one of my parents b/c I didn't yet know I was sick. Okay, I'm rambling. Like I said above, I've basically been through way too much for a person who's not even 30! I've had well over 30 surgeries, I had both legs amputated AND I lost parts of every finger on my right hand which just happened to be my dominant hand for the 19 years leading up to me getting sick. I take more pills than my 80 year old grandmother does, I have horrible arthritis, headaches are a daily occurrence, I have insomnia, I suffered from PTSD (post traumatic stress disorder... a lot of soldiers suffer from it after returning from war), I deal w/ depression, I've been in a coma, I've had TSS (Toxic Shock Syndrome), I've had my left hip replaced (the arthritis in that joint completely destroyed it), I've had multiple skin grafts, OH, & I went into cardiac arrest & my heart didn't start beating again until 52 minutes later! Sounds fun, right? Aside from all of my physical medical issues, I lost one of my dearest friends to diabetes in 2005 which pushed my already existing anxiety issues over the edge & landed me in a psychiatric hospital for a week. (which is where I was diagnosed w/ PTSD) I allowed myself to suffer through a verbally abusive relationship for 2 years (I'll do a separate post on that issue 1 day). The step sibling I was closest to while growing up was almost killed in a car accident about 4 years after I got sick. Luckily, he survived but he ended up suffering some pretty bad brain trauma. One of my biggest "fans" & one of the women I admire most, my Nana, died about a year after my brother's wreck. We also lost my stepdad's sweet mother (aka Grandma Farmer). It's literally just been one thing after the other since I got sick in June of 2001. For a while, I was not given a break. People need time to grieve & to take in everything that has happened & when life just keeps throwing things at you, you can't stop & do all of that. Since the start of 2009 things have finally been slowing down some. The hip replacement/cardiac arrest event took place in December of 2008 so things started slowing down at the perfect time! The only problem was I had about 7 years worth of traumatic events that I had to start grieving over. I had some pretty dark, lonely days for the 1st year... I had A LOT of grieving to do!! A LOT!! I didn't really start to come out of the grieving phase until like May of 2010 so for almost 1 1/2 years, I sat around, depressed! Lots of crying & lots of talking to God took place during this time. I also did a bit of journaling. Oh, & WAY TOO MUCH eating. I put on a good 15-20 lbs.! I don't really eat that much but during that year & a half of grieving, I literally did nothing! I sat on my butt! Or slept. Doesn't really matter how little you eat, if you don't move around some, you're going to put on weight. Then you end up w/ something else to be depressed over! I was offered the job I have now w/ the pharmaceutical company (Novartis) in March of 2010 & I did my first job in May of 2010. That's when the fog of depression started to gradually lift. Apparently, sitting around on your ass for weeks at a time is NOT the way to get out of a dark time. Traveling is however a good way to help yourself. Isolating yourself from everyone is NOT a good way to cure depression either! And by the way, interacting w/ people on FB all day does not count as far as socializing. You need to get in a little face time here & there. I really feel that doing this job has helped turn me around. Aside from getting to travel all over the country, I'm helping save lives! The feeling you get knowing you're preventing other kids from going from perfectly healthy to physically or mentally disabled is one that can't really be put into words. Plus, I know that I'm helping to prevent other families/friends from suffering through what mine have. It's just an amazing feeling. Always good to earn some Karma points! I'm seem to have finally snapped out of my year & a half funk. I will be making my annual trip to Chicago to visit one of my favorite cousins in the Fall & I plan on going to California to visit Dad & the rest of the Gray clan. Oh, plus, next month I'm doing a job in New Hampshire & since my stepmom's brother & his family live there, I'm going to stay a few days extra w/ them. Although I do seem to have a "brighter" outlook these days, of course I still have days that are dark and even a bit scary. I have issues with pain every single day. My arthritis has gotten a bit worse. I've lost some weight & even though I'm only doing it like 2 or 3 days a week, I've started exercising again. I know that will help ease the arthritis some. I also am going to have to figure out some time to put aside to have a little "touch up" surgery on my right knee. I was THIS close to losing my right leg above the knee so it's kind of the "problem child" for me. The surgery will be outpatient & should only take about 3 weeks to heal from. But, the shape of my knee is going to change some so I will have to have a completely knew prosthetic made for this leg. I realize most people don't know too much about how prosthesis work so I'll just let you know that in order for the prosthetic to fit correctly, feel comfortable to walk on, & not cause any issues for your skin, the inside of it has to be custom fit for your leg. It can be a long process b/c sometimes you have to keep going back to have the socket (inside) adjusted some. Aside from that one surgery, no BIG stuff should happen that would affect my physical health! I'm planning on going to beauty school in Spring of 2012 to become licensed in asesthetics. It makes me excited to think that in a little over a year, I could be working at my dream job! SO, finally, getting back to my theme song! It's, "This Woman's Work". I know many people know it for the Maxwell version BUT it's not his song. It was written & first recorded by Kate Nash. It was written for the movie, She's Having a Baby, w/ Kevin Bacon. Very pretty & very haunting song! I like Maxwell's version but I LOVE Kate's version. You can feel pure, raw pain in her voice when she sings it. Although the song is supposed to be from a man's point of view, it's not too hard to understand why I relate it to my life. You have to understand that all of the memories of my life are either "pre Meningococcal" or "post Meningococcal aka NOW". There are many things about my "pre" life that I miss every single day & of course, there are people from both the "pre" & "post" periods that I grieve for every day! She sings about how too much time was wasted & too many things weren't said & done while the opportunity was there. I took my health completely for granted, as many people do. There were things I could've done before getting sick that I can no longer do. And even w/ the deaths of family members & friends, most of the time there are things that you didn't tell the person that you wish had before the person died. As I said at the beginning of this post, I don't feel sorry for myself. I'm just well aware that in order for me to live a "normal" life, it takes a bit more patience & a bit more work! If you've never heard the song, take a listen. I realize most men probably don't care for this type of music but if you have a wife, daughter, or a close relationship w/ your mother, you should be able to appreciate the lyrics. Whether men want to admit it or not, it's take a lot more work to be a woman! We have to find just the right balance of strength & femininity, we wear all the uncomfortable clothes, shoes, & undergarments, we have to put on makeup, we spend more $ on keeping up appearances & hygiene, we get to put up w/ the joys of having a period every month, we have to go through menopause & of course, we give birth!! I wish for just one week, every single man on the planet could live life as a woman! (Well, not gay men b/c many of them can appreciate some of the things women go through a bit more than straight men can.)

One more thing, I do realize this video is 1980s, cheesy, music video (over)acting at it's FINEST! Still, the story of a man thinking back on some of the memories he has shared w/ his wife while she is about to die (or will she?) is pretty touching! It serves it's purpose! If you can't understand the lyrics & want to read them, you can go to this link: http://www.sing365.com/music/lyric.nsf/this-woman's-work-lyrics-kate-bush/59bca1ccdde91964482569a000310904

Happy Ten Years of Surviving, TO ME!

Today (6/19) is the 10 year anniversary of the day I went into the hospital w/ Meningococcal Meningitis! It's weird b/c I can remember a lot of it like yesterday but at the same time, it feels like a lifetime ago. Although the majority of these 10 years have been spent in & out of hospitals and operating rooms, I am so thankful for each and every day. I'm not sure I'll ever get used to this life since I lived 19 years as a healthy, "normal" girl. I almost don't want to ever get used to it b/c I don't ever want to forget what it was like during those 19 years. I know some people have never had the experience of living w/ good health so I never want to forget how blessed I was to have had those 19 years! If I had a chance to go back & re-do the night I got sick, I can honestly say I don't know what I would do. There have been so many times I've thought to myself, "God, what I wouldn't give to go back in time to that night! I wouldn't have gone to that party & I never would've gotten sick!". BUT, I also think about all of the wonderful people who have come into my life b/c of the fact that I got sick, I just couldn't imagine my life without them as part of it! I hope each & every nurse and doctor who has taken care of me at some point during these 10 years knows how absolutely grateful my family & I are to them! It's getting late & I'm pretty tired, so this is going to be a short post. I'd like to ask that if you never read my post from 5/18 that you please take 5 or 10 minutes to do so!! It could save your life or the life of your child. If you don't feel like looking through my blog for the post, here's the web address:  http://beautyandthedisability.blogspot.com/2011/05/i-hope-you-will-all-read-this.html . Also, even though it's completely unrelated, HAPPY FATHER'S DAY!!

6/14-6/16 ~ Michigan

This is just a super quick post to let everyone know I will be out of town working for the next few days. For those of you who don't know me, b/c of what I've been able to survive, I do motivational speaking. Right now I work for the pharmaceutical company, Novartis. They make a vaccine, Menveo, which prevents Meningococcal Meningitis (what I had). Obviously, I really want to do as much as I can to see more children & young adults get vaccinated so, when Novartis asked me (along w/ 2 other girls from the nonprofit I'm part of) to do some work with them, of course I jumped on board. Basically, they fly me all over the country & I get to speak at a dinner that's attended by doctors, nurses, pharmacists, & others in the medical field. I really enjoy it. It's such great therapy to get up in front of 50-150 people & just tell your whole story! I guess if you have a fear of public speaking it may not be too fun but luckily, I don't have that fear. I always meet the nicest people at these dinners too. I love that I get to go out for a swanky dinner, have a couple of glasses of wine & just blab. Doesn't really feel like work but apparently, it is! So, the blog probably won't be updated for the next few days but I'll be sure to write a post once I get back on how the 2 events I'm speaking at went. I'll try to get some pictures to share as well. Hope everyone has a wonderful week! See you guys in a few days!

I Hope You Will ALL Read this! Meningococcal Meningitis, 1 Hell of a Disease!



My "collection" of wristbands from all of my hospital stays & surgeries!!



I know most everyone is aware that I got sick & something really bad happened, but most people don't know the details. It's not always easy for me to talk about it to people who knew me in high school during my "glory days". It's kind of ironic (in a REALLY cruel way) that I was a dancer. Anyway, back in 2001, I was at a keg party w/ a ton of people. The next day I started to feel sick. Naturally, I thought it was just a hangover, so I ignored it. The following day, my condition was getting worse. I had a really stiff neck & a killer headache. That night, I woke up & could immediately tell I was about to get sick. I jumped out of bed, made it 2 or 3 steps & collapsed b/c of how weak I was. My mom heard me fall & came & picked me up and carried me to the bathroom. For about the next hour, I was doing nothing but puking! I didn't know it was even possible for a person to throw up that much. It finally stopped so I got back in bed. My mom took my temp. (it was around 100, maybe a little higher), gave me some NyQuil, & I went back to sleep. My mom had to work the next day but luckily she came to check on me before she left. I was literally so weak that at this point, I couldn't even lift my head off of my pillow. Plus, I had photophobia like a mother trucker! I remember my mom turning on my bedroom light & I just completely flipped out b/c I was so sensitive to the light. Mom checked my temp. again & by this time, it was getting just a bit too high. (around 104 or 105) I happened to lift my arm above my head & my shirt lifted enough to expose my stomach. I remember my mom's mouth just dropping when she saw it. I had a purple rash all over my body... arms, legs, stomach, butt, you name it! My body was aching SO bad. I remember just praying that she'd leave me alone so I could go back to sleep. Luckily, she didn't! She knew she needed to get me to a Dr. ASAP, but I was so weak I couldn't even lift my head. She knew there was no way she could get me all the way downstairs & into the car, so she called my uncle to come help her. (my stepdad's work was too far away) My uncle came & carried me downstairs, loaded me into the car, & off we drove to see my pediatrician from when I was little. When we got there, my mom ran to grab the door of the office & my uncle carried me in. I remember everyone in the waiting room having an absolute look of horror when they saw me. One of the girls behind the check-in desk ran to get one of the doctors. They immediately rushed me into the back to get me in an exam room & I just remember out of nowhere having 2 or 3 doctors in the room standing over me. Now, I was lucky & had an AMAZING pediatrician when I was little b/c this woman took one look at me & IMMEDIATELY knew what I had. (it's sad to say that it can often be misdiagnosed as the flu in the early stages b/c of the flu like symptoms) She had someone go call 911 & while she waited on the ambulance to get there, she & 2 other doctors started me on IV antibiotics. I was slipping in & out by this point but I do remember, as they were loading me into the back of the ambulance, she grabbed the guy who was driving & told him, "Floor it! I don't think she's going to make it.". (she didn't realize I was still alert enough to hear her) Now, you'd think that would scare me... but you'd be wrong. I was praying that I would die b/c at this point, I was in the worst pain. My entire body literally felt like someone had just taken a baseball bat & gone to town on it. I wouldn't wish this type of pain on anyone! I don't remember anything about arriving at the hospital but according to my mom, I was still awake. She said I was crying & screaming at the top of my lungs for them to just make the pain stop. Unfortunately, my blood pressure had bottomed out, so they couldn't give me any pain medicine. Once my team of doctors checked me out & diagnosed me (Meningococcal Meningitis) they realized the best thing they could do to give me any chance of survival was to put me into a coma. My body needed everything it had to fight to keep me alive & having me sleep through it could only help. I wasn't expected to make it through that night! I shouldn't have made it through! I was raised Catholic & things were so bad that my mom had a priest come & give my Last Rites. You can't receive Last Rites unless you are literally at Heaven's door, knocking as loud as you possibly can! So, I beat the odds & fought through that 1st night. Even after that, I was only given a 20% chance of pulling through. By this point, I had serious Gangrene in both of my legs, the tips of several of my left hand fingers, & every one of my fingers on my right hand. My fingers were so bad that the doctors had to go ahead & amputate them while I was still in a coma. My legs would come once I woke up. I was in a coma for 6 weeks. When I woke up, I had not a clue as to what was going on. I remember seeing my dad & stepdad in my ICU room when I woke up. My dad lives in California so when I saw him, I knew I was in bad shape. I remember being really confused & for some reason, thinking I was in a hospital in Phoenix! (in my defense, I was born there) I remember 1 of my doctors coming in & asking me how old I was & when my birthday was. I went totally blank when he asked me. I remember looking over at my mom & apologizing for not knowing! I noticed that everyone kept making sure my legs were completely covered, as if they didn't want me to see them. When I finally saw them I kind of went into denial mode. Despite the fact that they were both completely black (like when something's so black it has a blue tint to it) below the knee, I didn't really think they'd have to amputate. I was thinking that somehow, as if by magic, they'd come back to life. Unfortunately, that didn't happen. I remember the nurses coming into my room to take me into surgery. I was just thinking, "God, no! This canNOT be happening, not to me!". I didn't really care that I would never walk on my real legs again... but I did care that I was about to lose the most valuable things a dancer has... my legs. As they rolled me back to where the OR was, my mom held my hand & we prayed the Hail Mary the entire way. I don't remember much from the next few weeks b/c they kept me REALLY doped up! (methadone, ativan & dilaudid!!) I'd become a below the knee, bilateral amputee. (I actually have quite a bit of my leg still below the knee. I lost basically from right above the ankle & below.) I was in the hospital for several more weeks. I know I went into the hospital on 6/19/01 & I was still there when 9/11 happened. That's pretty much it as far as how everything happened. I was in & out of the hospital for the next few years b/c of how low my immune system was. I kept getting random infections every few months. I haven't really had to stay over night in a hospital in quite some time (other than having my hip replaced in 2008 but that's an ENTIRELY different story). I do still have what I refer to as "touch up surgeries" once or twice a year but they're usually outpatient. Other than that, there's not much more to tell. I walk on prosthesis, I drive a Jeep, I work, etc.. My life is as "normal" as it can be for a person in my physical condition. So, hopefully this long ass blog will clear things up for some people. It's much easier for me to tell people the details this way. I STRONGLY recommend that every parent get their child vaccinated for Meningococcal. It is extremely deadly & it is VERY rapid. Usually, if you aren't at a hospital & on antibiotics withing 48 hours of contracting the disease, you're going to die. For more information on the disease you can go to http://www.cdc.gov/ & look up "Meningococcal" or "bacterial meningitis" or you can go to http://www.meningitis-angels.org/. I am part of the Meningitis Angels organization. The woman who started it actually lost her only child to the disease. There are a lot of parents in the organization who lost children to it. Pretty much every survivor of the disease is left disabled in some way. It's kind of a "damned if you, damned if don't" type of disease. You'll likely either die or you'll get "lucky" & become disabled! If I had been given a choice in advance, I can honestly say I don't know which one I would've gone with! This lifestyle is not pleasant & it is definitely not for the weak at heart! Aside from being left disabled, some of the things many Meningococcal survivors deal w/ on a daily basis are:  headaches, depression, anxiety, insomnia, arthritis, anger/temper issues, PTSD, vertigo, adrenal insufficiency, lowered immune system, seizures, etc.! And you don't even want to know how many pills I take daily. Let's just say I take way more than my 80 year old Grandmother! Oh, & back to that keg party... the importance of me mentioning that party is that my doctors believe this is where I contracted the disease. It is very common in college aged kids. People can be carriers without actually getting sick from it. I more than likely drank of a carrier that night. If you're ever at a party where everyone's drinking off of those red, plastic Solo cups, BE SURE TO WRITE YOUR NAME ON IT!! Seriously! Also, parents, teach your kids not to drink off of other kids or eat off of other kids and teach your girls not to share lipstick/gloss. These are a few of the main ways it can be spread. It's scary but it's true! I do work w/ a pharmaceutical company that makes a vaccine that prevents Meningococcal. For information go to: http://www.menveo.com/.  If you call you Dr. & ask to get your child immunized & they tell you that b/c it's rare you shouldn't worry with it, 1) Feel free to give them my # so we can have a little chat! 2) Consider finding another Dr.! Doctors who say crap like that are the reason we see more & more cases!



The INFAMOUS "rash"! It's actually blood collecting under the skin from the vessels bursting! (FYI, this obviously isn't me) I'd imagine this person lost part of their arms & more of their legs than I did... if this person was even "lucky" enough to survive!