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.

It came my turn to educate myself, speak up, and get involved with things that would affect my future. That moment came soon after I was diagnosed with Crohn’s disease. I got to vote in the presidential election when I moved away to college and it was a big deal to me, though you’d never really know it by having conversations with me. A time and a place? Well, the last few years it has been the time and the place and it was evident to me that I must do my part to feel heard and to do what I feel I need to.. writing to my Representatives, Resistbot and appeals have been a large part of my vocabulary in the last 3 years.

But one question always seems to float to the surface: why must I have to explain to people why they should care about me? About my well-being? Because for me and my “family,” healthcare is my well-being. And truth be told, no one wants to be just a number.

So why do I continue? Because I know people so much more ill than myself who aren’t able to get out physically to make it out to advocacy events due to their disability. My ability decides my direction – I won’t stop until I physically have to.

My voice speaks for those who can’t be heard.

This is the one reason that advocacy keeps me grounded every day I wake up and decide to voice my truth: others depend on me.

So little of this actually has to do with politics, and more about actually caring for your fellow man. Imagine during this time where we see so much crisis, being able to put someone else’s needs over your own…especially over your wants. It has to do with caring for one another, so that we may all have a future, not just bettering one part of the population.

I’ll step off my political pedestal and leave you with this: I wake up 365 days a year knowing that without advocacy, my life wouldn’t amount to much. This is what I choose to do to serve people. Realizing that I have to keep explaining to others why I matter and why my life is important is one of the most heart-breaking things a patient with chronic medical issues can go through. Feeling meaningless, invisible and worthless in a crowd of millions of people. Please don’t make me explain why my life is valuable.

Want to become more involved in your legislature but not sure where to begin?

Text RESIST to 50409 and ResistBot help you contact your officials – from there it will prompt you to put in your location and find out who your representatives are and how to get in touch with them. Simply compose a text and it will fax that text to them automatically. Just follow the steps.

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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).”

Yoga has helped many people physically, mentally & psychosocially recover from traumatic events such as surgery, long hospital stays and overall well-being (1). For me personally, if I don’t do yoga twice a day, I find myself more irritable and much sorer than if I had done my practice. Without yoga, I find my arthritis is much more obvious to me in the way I walk, the way I handle objects and my overall coordination.

I have been religiously practicing mindfulness and meditative yoga twice a day for the last two months using the App “Daily Burn.”  There is a short quiz in the beginning about what type of classes you’d like to take and yoga is included in many categories. There are a ton of classes to pick from that are beneficial to specific groups of people. I picked strength training and one of the classes is meditative yoga; I do this once when I wake up and once before bed. I’ve been sleeping better and my anxiety has reduced before bed, which is when it’s at its peak. When I feel like I’m having a down, depressing day, I’ve made a point to “press my restart button” and do some yoga, whether it’s in a chair, standing up, sitting on the porch, or on my bed. My endorphins kick in which helps as a form of short-term therapy for me.

Because my arthritis impacts me in different ways, every day when I first get on my mat, there are certain adaptive devices I use to help me get into a better rhythm. I use blocks, a yoga wheel, towels, pillows and other props. Sometimes sitting in one position during meditative yoga can be painful not only for my bottom but also my spine. I am currently using a gel cushion to sit on to make things a little more comfortable when sitting for long periods of time.

As an athlete dealing with pretty consistent Crohn’s flares, it’s hard to just get back on the road and start running again. Yoga has provided me avenues to explore abilities of each body part. The mindfulness of yoga is a very important aspect. It lets my body “melt” and stretch as far as possible, letting go of the stress in my joints. Just like many people use foam rollers to help their recovery process, I look at yoga like my recovery tool when I’ve physically had a very bad day. Because of flares and being unable to participate in endurance events, at least when I practice yoga, it feels like I’m a bigger part of something.

Doing yoga in a studio with an Instructor, friends and an appropriate environment can make a world of a difference. There are often many free local events that you could check out in your town, especially in summer. Where I’m located, we have Yoga in the Park every week in different locations, as well as Yoga on the Deck located downtown where all the action is happening. Yoga has helped me to be a bit more social. So that, for me, is huge!

Do you practice yoga? How do you think it positively affects you short & long-term?

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:

Enteric Fistulas – These can occur in the rectum, ileum, proximal colon. Often times, the diagnosis can remain unclear and infections, as well as symptoms, can become refractory to treatment – this can be a clue that an Enteric Fistula is present. Some of these symptoms include suprapubic pain and increased urination, as well as pain while voiding, pneumaturia, or passing of “air” in the urine. 1

Vulvar inflammation – In the next article of our series, I will delve specifically into the anatomy of Crohn’s of the Vulva, but I want to briefly address it here. In Crohn’s of the vulva, patients experience painful inflammation with some physical evidence of infections such as swelling, discharge of ulcers on the labia minora and labia majora. Often, these cysts and abscesses may need further investigation. There has been data that shows certain drugs like anti-TNFs, and cytokine-targeting therapies aid in the healing of refractory enterocutaneous fistulas. 1

Vaginal Granulomas – This complication can actually be difficult to diagnose, as it can present with signs and symptoms of inflammation with or without the presence of fistulas/abscesses. Because of this, symptoms involving the reproductive organs can easily be misdiagnosed because of the lack of information about the gynecologic involvement of Crohn’s Disease.1

It is important that you have a gynecologist that you trust as part of your care team. I see a gynecologist that specializes in high-risk situations and is familiar with Crohn’s Disease, which makes bringing up my issues with both my GI and my OB easier and less humiliating. When you first begin to experience issues that affect your reproductive organs and as well as your gastrointestinal tract, it can be very difficult to bring these symptoms up to a care provider.

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Know that this is the best thing you can do before your symptoms worsen or infections develop. Ask your GI if he/she has any recommendations for a gynecologist that can help be the go-between for you and your GI. They have both played a crucial role in the care of my complications in the last year, as we determine my course of action.

Stay tuned for the next article in this series of Women’s Health in IBD, as I talk about Crohn’s Disease of the Vulva.

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