Pinktober

     This is one of those blog posts that I've debated writing because I figured someone would lynch me because I dare attack Pinktober. If you don't know what that means, October is Breast Cancer Awareness month where everything that is not already Pink year round gets even pinker and all the stores start feeding into people if they by Pink their contribution will go to fight Breast Cancer...that is not always true please read what you by and the store's policy. Now, before we delve into what I'm about to say please know that I am a full supporter in Breast Cancer Awareness and I have the deepest sympathies for anyone facing this horrible disease, but I think we need to realize that Breast Cancer isn't the only debilitating disease out there, yet one of the only ones who receive adequate awareness.
     We were in the ER last night and I took it upon myself between throwing up to ask staff some questions. First was simply, "What do you think when you see someone sporting something pink or a pink ribbon"? Answer was quick, "Breast Cancer". The next was what do you think when you look at me carrying around a lime green pillow pet and lime green blanket with the words "Fight GP" painted on my laptop bag in green and yellow"? The only response was I must like the colors green and yellow, most didn't know what gastroparesis, nor did they know about pseudo obstruction, or what I have is full blown intestinal failure with no ability to absorb food or liquid. These are people that work in hospitals, not the doctors because it is too obvious with them when you bring up the actual diagnosis, but still work around sick people all day every day. Most of them were sporting pink shirts, pens, mouse pads, car keys, even a few with pink hair streaks, and not one lime green or yellow anywhere. Most couldn't even name awareness ribbons when asked besides pink for breast cancer and red for AIDS. None knew that the NEDA heart on my wrist is the recovery symbol of an eating disorder and they couldn't name not one other ribbon to support any other cancer or disease besides breast cancer...anyone else see a problem with that?
     Those of us who proudly sport our green for our disease are often over looked because no one gets the disease so I'm going to break it down for you the best I can. Have you ever had one of those stomach flus that keep you in bed for about a week? I mean the kind that leave you throwing up in your spaghetti pot because the bathroom is too far, you smell food and you dry heave, and then you get the runs where you race to the bathroom hoping you can not puke during that awful activity. Your friends, spouse, parents, whoever find you in the bathroom clutching the toilet saying that you are going to die...everyone has been there at some point. You lay in bed for a few days and things get better, less begging for death while clutching the toilet, you are able to keep in water/Gatorade, then comes the soup and eventually you are feeling well enough to eat a meal. Your misery is over and you can go back to your life, work, parties, school, or whatever you do. What if that misery never stopped, what if everyday you had to feel like that, and you had to push yourself to keep going?
     There isn't a day that goes by that I don't run to the bathroom to throw up if I'm lucky enough to get there, or run to visit the bathroom for other reasons, my stomach churns without relent, my purse contains bottles of meds, syringes, extra clothes, and vomit bags. I am kept alive by a IV line, a central line known as a Hickman in my chest, everything that I need for medicine has to be put directly into my intestines with a prayer that we won't lose it, when I'm not throwing up the normal way I am either venting it out a tube in my stomach or watching it pour out a hole that ruins my favorite clothes. By the time I was twenty three they had removed all but three percent of my stomach and declared I would never eat like a normal person again...tubes and IV lines would be my life. I've had hundreds of surgeries and procedures, spent countless hours in emergency rooms, and even more laying in the hospital because of sepsis (blood infection), recovering from surgery, renal failure, heart problems, blood problems, and all complications of malnutrition because my body won't do what yours does without question. I'm twenty seven years old with a miraculous little two year old who was never suppose to live, we were never suppose to survive the pregnancy and by God's grace we did only for my disease to get worse. I'm pretty much dying now, kept alive by medical intervention, if it were taken away I would be gone. My hope is maybe a five organ transplant at this point, but there is a good chance my son will grow up without a mother. That is just my story and there are millions more worse that than. 
     There is no cure for Gastroparesis, there are treatments that barely help. Some people will respond to diet changes and meds, but there are quite a few severe cases requiring surgery, feeding tubes, IV nutrition, and other stuff. I've lost my ability to walk along with very close friends of mine, but I am lucky to have a life still. GP goes after all age groups, we've lost teenagers, kids, it doesn't discriminate against age, but lately we've lost younger women leaving behind babies that will never know their moms and still no research. We don't get a break, we live in pain, nausea, in and out of hospitals, and most of the time try to keep a smile on our face as we do it. We sport our green with no one bothering to take the time to see. People go to Wal-Mart and fill their carts with everything from pink bags of chips to hats, to water bottles, and even saw a pink rifle in the gun section talking about breast cancer awareness. Did you know that all that money you are spending you might want to check the label and with the store to see about how much actually goes to supporting it because in some cases none of it is going to profit research. I hate breast cancer, but I hate even more that I'm losing my friends to a disease that no one is doing a damn thing about while a whole month is given to one disease and it isn't just a month it is ALL YEAR long. I know it is a horrible disease and I hate that people have to suffer, but there are other deadly diseases out there. What about children's cancers...do you by things to donate money to childhood neuroblastoma which takes the life of many kids all the time, cystic fibrosis, leukemia, and many more rare forms of cancer that get maybe a week of awareness that no one bothers to pay attention to. Have you seen a two year old fighting neuroblastoma in the hospital, going through painful treatments and surgeries and still smiling...it is heartbreaking?
     Now to something else close to me...I wear a heart on my wrist that is purple and red...the purple being larger than the red. It is the National Eating Disorder Awareness heart representing recovery. Did you know that anorexia has the highest mortality rate for any mental illness out there? Did you know that the age of onset has gotten so low they have had to open centers for children as young as six? Everything changes when you see a little six year old with a yellow tube down her nose because she won't eat. You know that insurance has caused treatment to be put off to the point that there is irreversible damage if not death in the case of someone suffering, causing suicide rates to go up because health isn't available, but during NEDA awareness do you see posters at hospitals or at the local Wal-Mart asking you to support it? We are forgotten until it is your six year old or twenty year old that needs help and the insurance company tells you no and then a few months later you are burying your baby in the ground and no one does anything, hell there is barely awareness in school. What about the orange ribbons for self harm...the act of one person hurting themselves trying to deal with all the pain on the inside, those that you judge thinking your kid could never do it until you find the blood clothing in the hamper or their room. Still no awareness because it makes people uncomfortable.
       Believe me I know cancer is a tragedy, but breast cancer isn't the only cancer that deserves awareness. By this point in time women know they need to check for lumps and get them checked and there are places they can go for free unlike most diseases. Maybe I jaded, but I've seen those little kids with tubes down their nose crying over eating some carrots, I've seen the cuts on my own flesh just trying to survive, I'm lose friends and almost myself to suicide and anorexia, and I lost more friends everyday to the disease that is killing me...Gastroparesis. I go to the hospital and it is pink everywhere and not one person knows anything about raising awareness for everything else diseases people don't know about or don't want to know about. Nothing changes without awareness. Breast cancer patients can find treatment now, they have made great strides and unfortunately we still lose wonderful woman to the fight, but we forget those of us fighting in the lime green throwing up and crying while still fighting a disease that there is little research being done given there is no funding. We hold each other up because we are all we have. Please don't focus on one disease, we have to raise awareness for all of them and if we give them all a month were that is all anyone focus' on and we by into the lie that everytime you buy pink you are making a donation we are naïve. There are not enough months out there to donate a whole one to ever disease we have to fight together and keep our eyes open. Breast cancer takes moms away from their kids, but lately I have heard of three moms under thirty dying of GP related problems like a line infection, we go to bed every night not knowing if tomorrow is going to bring us a line infection or surgery we can't beat, and they had young babies...babies who won't even know who their mommy's are and no one even knows what it means when you see us decked out in our lime green on Fridays.
      Not trying to be disrespectful, but it had to be said.