Advocacy & Politics

I grew up in a family that didn’t speak of politics. I mean, I don’t remember politics EVER being brought into a conversation in any family or one on one conversations. Especially not at the dinner table. In fact, I grew up without TV. I appreciate it now and if I ever have kids, will likely have the same rules apply in my household.

But there came a time in my life that politics became more than a tight-lipped topic.

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You can also Visit CCF’s National Council of College Leaders: http://www.crohnscolitisfoundation.org/get-involved/national-council-of-college-leaders/ or TheHill.com

See the full article here: Advocacy & Politics 

The Power of Yoga for IBD

There are so many positives to practicing yoga. For me, short-term it changes my mood, my level of anxiety and relaxation and it seems to actually help calm down my gut a little bit. I find as I hone in on my body, instead of my surroundings and environment, I am able to better focus with a clear state of mind.

After I complete my routine, I feel refreshed, renewed and like I’ve changed my batteries.

According to Yoga International, “Yoga can reduce stress, anxiety, and fatigue in people living with chronic illness, and it can improve immune function. Yoga can also stimulate the parasympathetic nervous system (the part of the nervous system that helps you to rest and heal) and increase GABA levels in your body (GABA—gamma-amino butyric acid—is a neurotransmitter which can help calm the brain. Low levels of GABA have been linked to anxiety, depression, and insomnia).”

 

New to yoga? Try searching for free classes on YouTube to get started!

See the full article here on CrohnsDisease.com: Power of Yoga

Fragments of Hope

After a very few uncomfortable, humbling and isolating months, I have finally been approved to start a new (and great) therapy for my Crohn’s. I’ve bee holding on to a fragment of hope that this med will prevent me from having my ileum and much of my small intestine removed that has been floated around by 2 Dr’s. & my surgeon. To be honest, that little fragment of hope is all that’s kept me going.
 
I went in for a routine exam for my autoimmune arthritis on Monday and left with 2 diagnoses, one very unexpected. After all of the steroids I’ve been on, it seems I’ve developed the beginning stages of Avascular Necrosis of my left hip. Previously, I had been diagnosed with hip dysplasia, which is a genetic deformity of the hip. As much as I wanted to believe that my hip was taking a beating from the long-term results of having total knee reconstruction over 15 years ago, it seems that is not the case. Hopefully, with the help of my new biologic, the inflammation between my SI joint will calm down and will hopefully begin to heal. Sadly, until my body’s inflammation calms down, I will need small doses of steroids to help with that. When my biologic starts, it will help with the inflammation that is currently invading my hip.
 
Much of my steroid use has not been an option for me. Unfortunately, I lost my insurance twice within the last year, leaving me with no other option than to alternate between two steroids (this is not a good thing – I’m well aware how dangerous steroids are on your body long-term, but clearly there was not much choice). Going through all the hoops and hurdles that even the highest up at a pharmaceutical company helped with, I still was not able to receive the medication I needed most. I’m devastated at this new diagnosis and to be honest, I’ve had little time to digest it. But, I have hope. 
 
Between my Rheumatologist & my Gastroenterologist treating my autoimmune diseases, we have a plan I finally feel comfortable with to treat ALL of my conditions in one biologic. I still need to figure out my treatment plans with all new specialists regarding other conditions and complications due to my illnesses, but for the first time in a very long time, my hope feels real.
 
This last year has been one of the most difficult, challenging and alarming of my life. So, when I listened to my voicemail this afternoon after waiting for more than 7 months to be put back on a biologic, I sobbed. It’s taken 7 months for me to be approved for this drug and finally, it’s within reach. 

For anyone who has never had to worry about getting authorization for medications as serious as saving large parts of your intestines, I pray you don’t have to go through the pre-auth process for a drug you need.

Sadly, that’s how our healthcare system works. There are many flaws. But, there are many people who want to help. My GI yesterday saw the desperation in my eyes and knew I needed to be on this medication long ago.

Many things opened my eyes throughout this process, but the one that bothers me the most is the fact that I waited 3 months on Medicaid to be approved for authorization to start this med, only to lose my coverage for making $7 over what I was allowed to make under that coverage. With my current insurance, I was approved in 1 day. (yes, there will be a blog to come regarding this)
 
As for today, I’m going to go take a nap. Because fighting 2 flu strains with very active autoimmune diseases, with a compromised immune system – is no joke.
 
Please keep my story, and many stories of my friends who are ill, in the back of your mind while a change to coverage is made and while we as citizens have the opportunity and privilege to vote on items like health care.
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#onamissiontoRemission

Crohn’s Disease in your Where?

Today I want to talk about how Crohn’s Disease can manifest in women’s genitalia and what complications could possibly arise if/when a woman is struck with symptoms in that area. This topic is not talked about enough, but so many woman struggle with it. This is a second part to a series I’m writing about women’s health in IBD; here’s part 1.

Some of the complications women can deal with include:

 

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See the full article here: Crohn’s Disease in your Where??