I wasn’t an angel child. I got in trouble and every now and again. But I never ditched school. I didn’t lie to my parents. I didn’t commit any crimes. I’ve never been arrested. I volunteer & donate to charity. I’m raising my child. I help out my community. I am a good person. I’m not perfect, but I’m not worthy of the type of discrimination being thrown my way. My civil rights & freedoms being stripped. Not because of my gender or race. But because I am a patient with a chronic illness. My right to a better quality of life is being taken away from me.
Today, I received a letter from my prescription insurer, Aetna Medicare. And it was the straw that broke the camel’s back. For the fourth time, my medication related to IBD & it’s extra-intestinal manifestations, have been declined. After being properly treated for my UC by amazing doctors & surgeons, I am now back to the bottom of the barrel. Scraping cash together to make sure I will stay healthy enough to live the best life I can live for my son. Rationing meds, blowing through savings & credit cards, missing days of work that I can’t afford to miss…I’m back to square one. And it’s not because of Obamacare. No. It’s because people in Congress, in the White House, in the executive offices of insurance companies are all thinking of their bottom lines. The patients, the American citizens who pay their salaries, are not in the forefront of their minds. Employees in all three of these sections of work, will continue to have their healthcare, while we tweet partisan heavy arguments back and forth at each other. Senators with chronic illnesses are not up at 2:30am thinking of how bad their symptoms will get, if maybe they only take a 1/2 the dose to extend the medication. You know why? Because no matter how they vote and change our lives, their healthcare will stay the same.
I am furious. I am scared. I am ashamed. I am feeling guilty. I am sad. I am not going to shut up. I refuse to die at the hand of congress. I refuse to be patronized in to silence. We are human beings. If you are working and contributing to society, there is no excuse as to why you cannot put food on the table, clothe your children, provide a comfortable home and have health coverage that will maintain your health. So that you can contribute to society. I promise you, it is more expensive on the tax payer to have a thousand, me’s, sick than it is to provide affordable healthcare. The language used by Congress to scare people into believing lies about something that wouldn’t fit into their partisan rhetoric, is ethically repugnant and disgusting. The fact that we are allowing insurance companies to punish sick Americans, is absolutely shameful. What part of freedom and patriotism is this?
I cannot go back to the days when an insurance company can tell me that I am too much of a risk to insure, no matter the cost. I lost everything…everything, except for my child. But my career, my relationship, my car, my home and some of my organs, were all taken from me because I was unable to have proper health care. I was rationing meds and draining my bank account just to stay alive for my kid. For both of our sakes, I cannot go back to that. I will continue to fight for my rights and others. We will no longer be silent or discriminated against. We will no longer be punished for being living.
Today’s post is in partnership with Vaseline® is all about a mom’s favorite subject, dry skin!
Doesn’t it seem like as a boy mom, you are constantly screaming about hygiene ?! I thought it started at 13, but I was wrong. I feel like I’m constantly asking Hippo to brush his teeth, wash his hands, lotion his body. Yes, body. He’s always trying to come out of the room with just a portion of the revealed skin, glistening. Literally 1 square inch of his ankle is shining brightly, while the rest of his ankle looks like it’s been floured up for baking! You’re only laughing because you know it’s true.
Then of course there has been my battle with lotion. Before my IBD life, I already had very sensitive skin. Now with my post pregnancy, IBD, medicated life, my skin is pickier than a 2 year old toddler. It’s so hard for me to find lotion that my skin and I can agree on. I don’t like anything too watery. Nothing too heavy. Nothing greasy. Nothing with a heavy scent. Nothing that ignite and prolong hot flashes. Basically there is a laundry list of, No’s, to go with my lotion shopping. To be honest, I never considered Vaseline® brand lotion. Even though I often use Vaseline Petroleum Jelly for my lips & nose while in the hospital (they get super dry with the air and tubes) or back east in the winter. I just assumed that the lotion would be too heavy or greasy in texture. Well, I’m happy to say I was wrong. I tried the Vaseline® Intensive Care Essential Healing Lotion and it was absolutely amazing. My skin has been so dry. Like, I wash my hands and suddenly my hands are dry as a bone. I’ve been using Vaseline® Intensive Care Essential Healing Lotion in my daily regimen for a few weeks now. Suddenly, I can wash my hands without immediately reaching for some lotion after drying. My skin is soft, but not greasy in feel. The smell is mild enough that I can where it through my days of nausea. Vaseline® Intensive Care Essential Healing Lotion leaves skin deeply moisturized and looking noticeably healthier! Hippo loves it and actually will lotion his entire body! Yes, my child walks out of the house fully covered in lotion! Thank you, Vaseline® Intensive Care Essential Healing Lotion! You’ve accomplished the impossible!
Most people assume that because I live in Southern California, that I don’t know cold. That winter doesn’t exist in my life. Well…that’s just not true. When you live in Los Angeles four different types of climates are all about 30 minutes away. And where I live, nestled up against the mountains, it can get down to 25-30 degrees at night. Hippo takes full advantage of the cold, encouraging cups of hot cocoa with scorched marshmallows on top. Yes, the anti sugar mom, allows a very chilly Hippo to engage in mama’s speciality cocoa. Mostly because I kinda want it…LOL! So Friday Family Movie Night consists of homemade blankets from Auntie Sam, Freshly popped popcorn for Hippo, tortilla chips for mom and hot cups of Hippo Mama’s specialty cocoa.
Vaseline® Intensive Essential Healing Lotion & my hot cocoa has definitely helped Hippo & I get through this winter season.
Hippo Mama’s Hot Cocoa
Yields 4 cups
Natural Unsweetened Cocoa Powder
Sweetened Condensed Milk
Milk (or milk substitute)
*just a warning. I cook by eye, not measurements. Yes, I am that creole!*
Pour Cocoa mix into mixing bowl. Add seasonings and mix. Pour condensed milk (half a can is usually good enough) to a small sauce pan. Add milk until sauce pan is almost filled. Mix and simmer. Add two drops of Vanilla extract and mix. Wisk in dry mix until Cocoa is dissolved and mixed in with milk. Let simmer until it thickens & warms up. Pour into cups, cover the top with mini marshmallows. Scorch all marshmallows slowly until they are crunchy on top and gooey inside.
You can thank me later!
Every purchase of Vaseline® lotion (or jelly) in the U.S. will help support Direct Relief through a buy one to help heal one promotion. Learn more at http://bit.ly/2inf8ZI (and see the difference The Vaseline® Healing Project is making)
This is a sponsored post written by me on behalf of Vaseline® Intensive Care Essential Healing Lotion.
If you follow me on Facebook, you know Hippo & I love to utilize the new Facebook Live status updating mechanism! It’s a great way to interact with people in real time! I’ve been using it for fun and for advocacy. TONIGHT, I will use it for advocacy. Last week, at the last minute, I jumped online to talk about The Affordable Care Act and kind of break it down a little bit. We also spoke about advocacy. It was a great interactive conversation. Let’s do it again!
There is a lot of fear and confusion surrounding the vote last week. Do we have healthcare? Was it repealed last week? Etc. Etc. Join me and some other advocates tonight on my Facebook page. Ask questions, take notes and participate! This is not time for partisan politics. Just facts and information. This is a time for us to exercise our right and be heard. This is a government of the people, by the people and for the people. We should all be advocating!
6 years ago today, I remember standing in my shower in a fit of tears. I was about a year and half into motherhood. I was three years into IBD life post diagnosis. I was two months into life in Texas. I was flaring and I stood holding a fistful of my own hair in my hands. It had come out when I was shampooing. I was rapidly losing weight. Everything I ate, made me nauseous. My life was in a tailspin. My body was turning on me.
I never really cared about my hair. I had gorgeous thick, curly hair that grew faster than any of my mother’s clients. I constantly cut it off. I knew it would always grow back. I didn’t care. Suddenly, with a fistful of hair in my hands, I cared. I cared a lot. And I wanted my hair. I wanted all of it. It became clear that it was never postpartum that was taking my hair. It was IBD. My curls were straightening and my hair was leaving me. IBD was taking my hair. Like it took everything else. My mother decided a few months later that it might be easier physically & emotionally if she just cut it off. She cut it very short and helped hid all my little bald hot spots. I cried the whole time she cut it. I watched my mother painfully cut my hair off. Seeing her struggle watching me struggle. That was a horrible time. Horrible time.
Needless to say, my hair began to grow and grow and grow and grow, as soon as I started Remicade. And so today, 6 years later, I sit in my mother’s salon chair with a short, teal colored, pixie haircut. By choice. I decided I wanted to cut my hair. And I did it. IBD didn’t decide anything for me. This is one thing I took back from IBD. I took back my hair. I gained my weight back and I grew my hair. Inflammatory Bowel Disease be damned. It will never keep me down! How and why has this haircut made me feel powerful and fearless? Why am I celebrating a haircut? Small battles. I chipping away at the war. I’m quite sure that I will never be cured of IBD. In my lifetime, we will not see a cure. But that doesn’t mean that it wins. There are things that I can do, that you can do, to beat this disease. Arm yourselves ladies and gentlemen. It’s time to battle! Sound the war cry! Let’s get it!
Like most of you living with a chronic illness, the dark cloud of the possibility of health insurance being revoked, is hanging over your head as we step into the new year. Grant it, ACA (Affordable Care Act) is not in fact, affordable for a lot of families. Needless to say, changes need to be made when it comes to ACA. But, a complete repeal is just not fair. Before the bill was amended, it was a very good bill that with a few tweaks & growth, could have truly changed the face of healthcare in this country. But lucky us, Congress turned our health into a political tug of war. And now patients with chronic illnesses stand in fear of going back to either emergency room care and/or going broke just to stay alive. For me, I refuse to go back to the hell of not living with health insurance and being denied a basic right, as a hard working American. You’re reading this wondering, what can I do to make real change? Well, I have a few solutions and they all including advocating! Using your own voice to make change happen.
Dissect Affordable Care Act
Read the bill as it is in it’s current state. Then compare the original draft with the current amended draft. Download, print and highlight. Make notes. Create a list of Pros & Cons on how the ACA affects you and your family. Look at the bill through non-partisan eyes. This is the only way to really understand the bill without the noise of democratic & republican’s partisan noise. At the end of the day, their health insurance is AWESOME and their jobs are to govern and campaign all the time. Your job is to take care of your family. Take the party loyalty glasses off just for a second.
Identify Your Member of Congress
Even I don’t remember the number identification of my district. It’s just another thing I need to remember and I don’t have time for. But I do know who my congress person is. Take a moment to visit the House of Representatives & the Senate websites to identify who represent your district & state on the national stage. Once you identify them, get their contact information in Washington & locally. After that, visit Congress.gov & search for your representatives. Take a look at their voting record. Find out what committees they sit on. This way you have some information & an understanding of who they are. This will help you identify the Senators & Congress people voting against your best interest in Health, Education, etc. Highlighting those members of Congress who hardly vote at all, but are collecting a check from your tax dollars. Find out which members of Congress are apart of the Crohn’s & Colitis Caucus. How invested is your state & district in IBD related issues? Arm yourself with information.
Choose your form of Advocacy
There are plenty of ways to advocate. You can jump online and chit chat. You can attend local town hall meetings. Make trips to local congressional leaders offices or make the trek to Washington to advocate. But how? How do you get started? First, figure out how you want to use your voice! Do you want to speak directly to congress? Do you want to support those already lobbying on your behalf to congress? There are so many different ways, you first have to identify how you want to get it done. And to be honest, I will have to break down on a variety of posts on how to do all these, because even though it isn’t that complicated, it is absolutely detailed.
My point with all this is, I don’t want people to panic. There are so many aspects of our lives where we have no control and we feel helpless. I want you to know that there are so many ways you can be apart of protecting your health. I truly believe that we should focus our energy on the things we can control, and accept the things we cannot. Over the years we have watched Senators & Congress people bring IBD awareness to the legislative branch. Research dollars toward cures & medication related to IBD have risen. IBD related legislation has been pushed through Congress by leaders like Senator Harry Reid, Senator Chris Murphy, Senator Dianne Feinstein, Rep. Anders Crenshaw & Rep. Nita Lowry. We have made strides. But it’s because advocates in our community have not let up. We must continue to fight IBD on all fronts.