Awareness Week-Why I’m Participating

December 1st begins the week of awareness for Crohn’s disease and ulcerative colitis. Since these inflammatory bowel diseases are the reasons I started this blog in the first place, I thought I should take part in this awareness campaign and share some information this week about Inflammatory Bowel Disease, specifically Crohn’s and Ulcerative Colitis.

5 million people in the world are battling one of these diseases.

That’s equal to the number of people battling Alzheimer’s in the United States as well as the number of people who die from tobacco usage each year. When I googled 5 million, these are the statistics that came up. As well as that 1.5 million people in the United States are living with Lupus. These are all terrible and scary numbers, and horrible diseases for people to battle, but that’s not my point.When I did this google search, after going through 7 search pages there had still not been mention of Crohn’s disease or Ulcerative Colitis. I stopped searching after that.

There is not enough awareness for this cause. Inflammatory Bowel Disease is an autoimmune disease that has no cure. No cure. That means 5 million people have been told that they will live the rest of their life fighting this disease and taking medication to try to ease the symptoms (we’ll discuss these in a later post). 5 million people are being told they don’t know what caused the disease to occur, and whether the treatment will work. This number is on the rise, and it’s time to take a stand so no one else has to hear those words.

Speaking with some other IBD Warriors, one of the most frustrating things to deal with is the fact that most people do not understand that inflammatory bowel disease does not have a cure. People are constantly asking when you will be normal again, when you will stop taking your medications or getting your infusions or watching your diet. When will you be able to go out and party again like the old times? People ask this because they care, and because they don’t know any better. They don’t mean to offend or frustrate you.

In my opinion, the only way to bring understanding is to continue to raise awareness and be open and share what inflammatory bowel disease is as soon as the opportunity presents itself.

I remember when I woke up from my colonoscopy, still spinning from the anesthesia and heard that I had ulcerative colitis. Oh. What’s that? I figured it was just something I could take some antibiotics for and it would go away, like bronchitis or something. Uh, not exactly. The doctor said we would meet next week and discuss my treatment plan. And there I was, in my hospital gown with my mom, sipping on my sprite and realizing that my life had just been flipped upside down.

Getting a diagnosis of “no cure”means a lot of emotional turmoil. You battle with “it could be worse” and “why is this happening to me?” It means I get to have good days that I won’t let slip through my fingers. It means I have days where I don’t leave the bed until late in the afternoon. It means I have to take pills every day for the rest of my life, and deal with the side effects. It means that I don’t know if my medications will continue working. I don’t know when my next flare up will be. I will most likely need to continue taking medications and receiving infusions for the rest of my life. I will consistently be watching what I eat, because I’ve found that some foods trigger flare ups for me.  It means that someday, like 50% of others fighting these diseases, I may face surgery in my future. This may be surgery to remove part of their intestine, or their whole colon. And this means someone you know may be suffering. There are treatments that can put some of the symptoms into remission. Often these treatments bring very scary side effects. But they do offer a chance at a normal life.

It means I am passionate about raising awareness for these diseases. Every time I see someone else receive this diagnosis. Every time I go to the infusion center. Every time I go to the doctor’s appointments. Every morning and night when I take my medications. Every time I scroll my twitter feed and see someone else suffering. Every time someone from my IBD family gets admitted to the hospital.

Do I wish that I had never received this diagnosis? Of course. But I wouldn’t give it to anyone else in a heartbeat. I’ve met some of the most incredible people through this diagnosis that I would never have connected with if I didn’t go through what they were going through, or vice versa. And if I wasn’t fighting for more awareness, for a cure, who would be in my place? It could be someone you know.

Join me this week as I focus on these two diseases and how we can find hope while fighting them, and while healing.

someoneyouknow

 

#ShowMeTheMummy-Raise Awareness for IBD

One of my favorite IBD advocates and members of my support team, Colitis Ninja started this awareness campaign and I am so excited to participate in it. What you do, is wrap yourself (I would suggest having someone help) up with toilet paper and hold up a sign stating how IBD has affected you, good and bad. You can read more about the actual campaign on her blog www.colitisninja.blogspot.com

I chose to do my photo while getting my infusion. One of my soul sisters was there visiting with me and she helped wrap the toilet paper so my IV didn’t get in the way and took the photos.

#Showmethemummy

IBD took a lot from me. It’s taken a lot of money, from hospital bills to prescriptions to vitamins to infusions to special food. It took my ability to eat anything I wanted any time I wanted. It made me buy diaper cream and prep. H.  It took my 26th birthday and made me spend it hooked up to IVs waiting for the all clear to get remicade. It took so much blood I had to get blood transfusions. It took my reliability and made me person who sometimes has to cancel plans because they need to be home close to their bathroom, or they are too exhausted to even try to leave the house. IBD took my emotions and threw them into a blender. It took my muscles, it lowered my blood pressure, lowered my iron levels, and stole my energy. It stole my ability to live a carefree life.Thanks to the infusions I receive every 8 weeks, along with prayer, diet changes and daily yoga, I am as close to remission as I am going to get. And even though I no longer am losing blood (thank God),I still have an autoimmune disease that has no cure. I still fight every day to have as much of a “normal” life as possible. The infusions come with their own side effects, and I experience a lot of hair loss, joint inflammation, and am more susceptible to other diseases and virus because my immune system is lowered.

It’s hard to look at the positive of being diagnosed with IBD. But it has made me stronger than I ever have been before. That saying where you never know how much strength you have until being strong is your only choice? That fully applies here. I know that because I can battle this disease, I can battle anything that comes my way.

Having IBD has also made me re-evaluate relationships in my life, and I can say with a full heart that all of my friendships and relationships are high quality, strong and true. I have some of the greatest friends, am closer with my family, and have found a person who will be by my side while I battle this for the rest of my life. I have weeded out the flakes, and I couldn’t be more grateful for that. I don’t have time or energy for someone who is only going to be around when they need me.

IBD has also given me a dedicated yoga practice. I have learned so much about the mind body connection, and I practice yoga every day to stay in tune with my body and to relieve stress. On days when I can’t seem to get anything right, and my balance is off I can come to my mat for practice and remember when I couldn’t stand up long enough to take a 5 minute shower, or wash my own hair. And I am so proud of myself for how far I’ve come.

This disease has also brought me closer to God. I had a relationship before, but I had never fully experienced the power of prayer. Now I can feel it, and I know, and I talk to God every day. It keeps me grounded and lets me know that there is a bigger plan than all of this. I know that I have a purpose, and that comforts me and guides me.

Another unexpected perk (?) of IBD is the amazing circle of friends on social media and support groups that I have found. I often refer to them as my imaginary friends. I’ve never met anyone in my #IBDfamily personally. But I don’t know how I would have gotten through this disease without their support or encouragement. I am so inspired an encouraged by them, and so grateful for having all of these kind souls as a part of my life. It gave me the idea to spark hope and start this blog. It’s lead me to connections with others that would have never been possible without this diagnosis.

And that brings me to the final thing that IBD has given me. A sense of gratitude. I make it a part of my life every day to note the things I am thankful for. It can be something as simple as a cup of coffee, or an email someone sent today, or a phone call with my dad. Or as big as an IBD sister in the hospital healing. I’m thankful every single day, good or bad. I’m appreciative of what I’ve been given, because I know first hand that it can be taken away at any moment.

IBD is not a joke. It’s not a poop disease. It’s not something to be taken lightly. I wouldn’t wish it on anyone, but I do wish it was more well-known and understood. Do you have IBD, or are you a caregiver for someone fighting the disease? Please share your experience using #showmethemummy. Raise awareness with us.

ShowMe1

Hope Warrior-Colitis Ninja

I found Colitis Ninja on Twitter when I was looking for support/trying to find anyone to relate to what I was going through when I was in and out of the hospital in May. Her mission is incredible, the sole purpose is to support people suffering from IBD, and not just the patients but also the caregivers (so important!!). Her honesty on her blog is so refreshing and she’s just a great friend to have and an important part of the IBD community.  Plus she’s quick to respond to any question and checks in to see how you are doing! It’s continues to impress me the love and support I get from strangers and other people I have never met before.

I’m so thankful for what Colitis Ninja has created, and for the hope that she brings for anyone suffering with a disease. The disease sucks. It’s not just a poop disease. It’s real, it hurts, and it’s scary. When you can find strangers to support you in your fight for a cure, or for remission, or for recovery from surgery, or just to make it through the day, it brings a light into your life that might have been dimmed out a little bit.It’s encouraging, it’s empowering, and it helps me continue to kick this disease in the tushe (yea, tushe). So thanks for sharing that light, Colitis Ninja. You are so appreciated.

 

If you are suffering from IBD, or know someone that is, or just want to learn more about the disease, Colitis Ninja is an incredible resource and so, so supportive. Give her a shout on Twitter, or watch some of her YouTube videos and reach out on FaceBook. And don’t forget to subscribe to the blog. I was lucky enough to get her to answer some questions for me about her experience with IBD. Look into participating in her #showmethemummy awareness campaign (Look for my post soon!)

TWITTER: @ColitisNinja
ShowMe1
What is the number one thing you’ve learned about yourself since your diagnosis?

This is a hard one. I have learned that I am stubborn (in both good and bad ways). I am also very prideful, and I’ve learned that sometimes I just need to let things go. 

When were you diagnosed?
Valentine’s Day 2011. I was blessed to get a quick diagnosis. I had only been suffering for a month and a half.

What are your current medications/what lifestyle changes have you made to treat your IBD?
I now have a j-pouch. I had the ileal pouch anal anastomosis surgery… in short, I had my colon removed. Right now, thankfully, I am not on any medications.
I tried multiple medications/diet changes and in the end, I had to have surgery.

How do you keep your mental health intact while dealing with the symptoms/changes of the disease?
For me, prayer–and lots of it!!! But not just that, being able to talk with others about it has been very helpful. Knowing I’m not alone in my suffering. Support is SOOO much more important that most people realize. A lot of people suffer unnecessarily alone and in silence. 

What do you struggle with most? What are you doing to overcome it?
I guess the thing that has hurt me the most (aside from the physical pain) is that I feel as though I was “robbed” of my black belt. Some people may think that is silly, but I fell in love with karate long before I started practicing it. I was 6 months away from my black belt when UC hit. I couldn’t go to my classes because I was glued to the toilet and anemic. Then there’s the whole Prednisone issue. It made my joints stiff and very achy. Not good when you’re in difficult stances. I have taken a step back and realized that just because UC came at the wrong time, it doesn’t mean I’ll never reach my goal. I am feeling much better since my surgery and I’m hoping that I can get back into it around the beginning of the year. Maybe even compete. The only thing is, I’ve moved 3 hours away from my dojo and finding a new (and suitable) one has proven to be another obstacle.

Any advice for newly diagnosed? 
My first thought when I was diagnosed was, “Good! All I have to do is take my meds every day and I’ll be alright!!!” Then it became the biggest and most frustrating battle of my life. I would tell someone in the same situation that this battle is neither fun nor easy. I would tell them don’t let it get you down! Find support. Don’t be afraid to try different treatments or diets! There are many people out there who claim to have been successful on alternative remedies. Never lose your passions. Never let this disease knock you down. You will have downs, but you will also have ups. You are stronger than you think you are.

Rules to live by?
Never lose sight of who you are and what you want to accomplish in life. 

Quote you turn to when you need to be uplifted:
“Now this is what the LORD says–the One who created you, O Jacob, and the one who formed you, Israel–‘Do not fear, for I have redeemed you; I have called you by your name; you are Mine. I will be with you when you pass through the waters, and when you pass through the rivers, they will not overwhelm you. You will not be scorched when you walk through the fire, and the flame will not burn you. (…) Because you are precious in My sight, and honored, and I love you, I will give people in exchange for you and nations instead of your life. Do not fear, for I am with you…”
–Isaiah 43:1-2 & 4-5a

Music/Song: 
So many. First, anything by Owl City. I dare anyone to listen to his songs and contain themselves. Such upbeat and encouraging stuff. My favorites include (but are not limited to) “When Can I See You Again?,” “Galaxies,” and “Dreams and Disasters.” Also, I adore Jon McLaughlin. That man has talent!!!

Go to Snack when flaring
Chocolate. Potatoes. Macaroni.

Activity that lifts your spirits:
Karate. Drawing. Blogging.

Your philosophy/mantra that you’d like others to know about you. 
I am a Christian. I am far from perfect. Without Christ, I would have given up on life a long time ago. I’ve had many battles (a lot of them UC related, but not all), and without the strength and grace He has given me I would be a wreck right now. I’ve had many nights and angry words with Him, but He always has my best interests at heart and He has NEVER given up on me even though I’ve given Him several reasons to.

What would you do with a million dollars?
Firstly, I’ll be honest, I would pay off the student loan debt I’ve acquired. I would invest some of it in Colitis Ninja to raise awareness and probably donate some to some of my friends who cannot pay their medical bills because of IBD. 

Who do you admire?
My husband, Dave, for his wisdom. Don Byington, my karate instructor. Multiple IBD fighters (too many to name!!!).

What is your mission?
I am VERY passionate about raising awareness and helping other people through their suffering. I want others to know that they are not alone. I want others to see that although these times are hard, there is also a beauty in the suffering. That’s been my experience anyway. I want to make others laugh. We do enough crying and mourning over our diseases, sometimes we just need some joy in our lives.

 

The Paleo Partridge- Hope Warrior

Thanks for tuning in this Wednesday folks!

Have you met the Paleo Partridge? AKA Martine? She is an amazing lady who creates some delicious AIP recipes to help ease her IBD, and makes many other tastebuds happy as well! Martine battles Crohn’s Disease, another inflammatory bowel disease that can cause some nasty pain and symptoms. But she’s a warrior and fights it with a positive attitude and is super relatable in her posts. She’s also been very encouraging to me personally as I battled my last flare, and her support was/is so appreciated still.  Check out her website www.thepaleopartidge.com . You can also find her on instagram posting mouth watering dishes and gorgeous shots of her travels @the_paleo_partridge. Get to know the Paleo Partridge below! Thanks for answering some questions for me, Martine. You’re the best!

martine

What is the number one thing you’ve learned about since your diagnosis?

I’m stubborn, doggedly so. This can be a weakness as much as it can be a strength, and I realize that while being obstinate about certain things-like your health-can bring great outcomes, it can also become a negative force. So it’s very much a process. (haha! Just ask my near and dear). I will say, though, I’m so proud of the determination I’ve exercised when it comes to my physical, mental and emotional wellbeing-I’ve made leaps and bounds progress and feel healthier than I ever have since my diagnosis of Crohn’s Disease.

When were you diagnosed?

I was diagnosed with Crohn’s Disease at 15. Goodness! It’s hard to believe it’s been a couple decades since that diagnosis.

What are you current medications/what lifestyle changes have you made to treat your IBD?

I currently take Humira 40 mg every two weeks as well as on-and-off Cipro and Cortifoam (a rectal steroid) for stubborn perianal Crohn’s. I started following a paleo lifestyle about eight months ago and implemented the autoimmune paleo (AIP) protocol four months ago with some unsuccessful attempts at reintroductions of eggs and nuts. So now I follow AIP for the long haul, and that is A-OK by me because I’m feeling fantastic.

For some people, medication is enough, but I’m not one of those people. On conventional treatments but without paleo and AIP, I struggle with abdominal pain and cramping, painful abscesses that drain causing fistulas, chronic anemia, zero energy, joint pain and horribly high inflammatory markers.

I’m so grateful to have found out about AIP because it eliminates all of those horrible symptoms. I don’t experience the constant problems with abscesses, and my blookwork has improved so much. I’m especially excited about consistently keeping my C-Reactie Protein (a sensitive inflammatory marker) in the normal range. I’m also ecstatic that my iron levels recently came back up on their own without the need of an infusion.

(THIS IS SO AWESOME TO HEAR!!)

How do you keep your mental health intact while dealing with the symptoms/changes of the disease?

Looking after my emotional and mental wellbeing has been the most challenging aspect of having a chronic illness. And even though I’ve been battling autoimmunity for so long I’ve only recently made progress in maturing my heart and mind.

About a year ago I found a Certified Hakomi Therapist (CHT) and worked very hard with her for several months in order to learn to love all of me, cranky colon included! I spent years loathing the part of my body affected by Crohn’s which means I spent those years actually hating a good part of me because I viewed the diseased part of my body as an invader, a betrayer and a monster. My therapist helped me learn to nurture and love my large intestine, which led to an incredible inner peace and calm as well as a feeling of wholeness, which had been missing since my diagnosis as a teenager.

What do you struggle with most? What are you doing to overcome it?

I still struggle with keeping my emotions in check, specifically I fight against negative thought patterns and anxiety related to the daunting permanency of an autoimmune diagnosis and the trauma of bad (and sad) memories related to suffering with this disease.

In order to keep all of that in check and not slip back into my old habits of self-loathing, I maintain a regular practice of yoga and meditation. The movement of body and mind augmented by breath is tremendously therapeutic and calming; it helps me regain focus and not allow that antagonism between body and mind emerge again. I’m so grateful for my practice of yoga and meditation; the practice has changed my life and I don’t know where I’d be without it.

Any advice for the newly diagnosed?

Hold your head up high. Don’t let IBD or any disease rob you of your self-worth. You are an amazing human being! Be proactive. Educate yourself. Work with the medical professionals to find a treatment-conventional, alternative, or both- that works best for you.

Rules to live by?

Never let the disease define you, you are so much more than the diagnosis. Oh, and prioritize sleep-get your eight hours, kids! 🙂

Quote you turn to when you need to be uplifted:

Hmmmm….this often changes, but I usually write down an affirmation for the month on a sticky note and put it on my computer. This month’s affirmation: “Your dream doesn’t have an expiration date. Take a deep breath and try again.” I love that! It keeps me focused and hopeful.

Music/Song:

Anything by Vampire Weekend- I totally dig every single track on every one of their albums (yep, I’m a fan-girl). Also, can I just say Stephen Paige (formerly of Barenaked Ladies) has the most awesome voice ever, and I crush on him regularly.

Go to Snack when flaring:

Roasted chicken and well-cooked mashed carrots with a big dollop of coconut oil, yummy cozy, soothing, low-residue comfort food.

Activity that lifts your spirits:

Yoga, yoga, and yoga. Meditation. Also dancing to a good beat! 🙂

Your philosophy/mantra that you’d like others to know about you:

I like to remain curious and thoughtful about the world because if you’re bored, you’re boring. And that’s just not cool.

Hope and Guilt

Guilt. A bad feeling caused by knowing you did or thinking that you have done something wrong, according to Webster.

With this disease, I’ve been struggling with feelings of guilt. Guilt about taking medications, being in pain, being unable to attend events, eating, sleeping, and many other things. Mostly though, I feel my guiltiest when I feel like I’m being lazy, or at the thought of being viewed as lazy.  I often find myself pushing to get through an entire to do list of errands and tasks. And for what? To prove that I have what it takes to run errands and feel accomplished? To show I’m a functioning member of society? To show that I’m capable? These are all noble attributes and nothing worth scolding myself for. So I can knock tasks off my list without a single nap. What am I trying to prove?

I feel like I’m fighting my disease in this manner. I want to do it all. I want to be that friend, that girlfriend, that daughter, that advocate, that yogi, that writer, that inspiration. I don’t want to have this disease impose limits on me or give it control over my life. But, I’m learning, there’s a difference between succumbing to my disease and letting it defeat me: or accepting the disease as part of me and learning to live WITH it.

Yesterday, I was exhausted. And I felt so guilty about sleeping in and laying around for a couple hours watching Netflix and then reading out on the porch. It was Saturday, and I was down on myself for going easy. Granted, I slept less than 5-6 hours a night this week. I was released from the hospital a month ago. I returned to work full time 2 weeks ago. I’ve moved houses, started remicade infusion and now my body has been hijacked by steroid side effects. I’m wringing my eye mask out and stripping out of drenched clothes in the middle of the night from sweating. My face is swollen, my joints ache, and I swing from happy to sad to wanting to throw things every ten minutes. And I’m feeling guilty about wanting to do nothing for a few hours on a Saturday morning.

I don’t want to make excuses. I grew up with a mom who struggled with depression disorders and always needed naps before doing the dishes or couldn’t make it to events or clean or remember commitments because she was too tired. I understand more about her illness now and don’t judge her for needing that time. I know now that this is just part of her, and she does what she can. But I hate when I need it for myself. I have the ambition and I want to feel accomplished. I don’t want to be viewed as lazy or unable.

But I am limited right now.

I’m still healing. And this disease does not have a cure. This disease does not have a cure. When is this going to sink in? Even though I’m nearing remission, I’m still going to be battling this and dealing with symptoms for the rest of my life. This is an autoimmune disease. My body attacks itself. And I’m fueling the fire with guilt about it. So how do I go from battling and fighting to acceptance and building a life around it?

I need a plan.

First of all, time to stop the negative self talk. So, I’m tired. That does not make me a miserable excuse for a human being. It makes me human. A human with a chronic illness. Is it possible to be tired and happy at the same time? What a novel idea.

Step one: If you’re tired, be tired.

But you don’t have to be upset about it. Just be tired, do what you can, and move on .

So you can’t get to all the items on your to do list of the day. Can some things get done tomorrow? Of course. What is really important? Is it even on that list?

Step two: Determine what is important to you

PS.. It should be what makes you feel good. Why have a list of things to do that make you feel worse? You already have a disease trying to do that, remember?

Now time to face the big guns. As much as I don’t want to admit it, there’s a part of me that does care what other people think. Luckily, I have an awesome support system that listens to my ramblings and tends to love me anyway. Other people outside of my circle don’t matter so much. But my inner circle, I don’t want to disappoint them. Sometimes it feels like they’re waiting for me to be “back to normal,” whatever the hell that is. And I don’t know that going back to who I was before is ever going to happen. I might always be a little bit limited. My endurance and strength may never be where they were before, at least physically. Mentally I could blow away the competition in those two categories. I know they’ll love and accept me anyway, but again, I don’t want to disappoint them. They’ve fought right along with me in prayer and hope and positive thinking and I don’t want them to let them down by not healing fully. I know it’s something that will take more understanding and acceptance what this disease really is. And I have to come to terms with this as well. I’m just not the same. And that’s not a bad thing.

Step 3:Talk to inner circle. Believe them when they say you are strong and it’s okay to rest.

They don’t think you’re lazy. They want you to be healthy and happy too. You aren’t letting them down by taking care of yourself. This is the part that you need to do in order to heal and make those prayers answerable.

 

So, these are the things I’m going to work on while embracing (wince) my inflammatory bowel disease. Dear colon, I hug you. Let’s be friends, okay? We’re in this together. Anyone else out there deal with the guilt? How do you manage?

WORLD IBD DAY- Hope in the Beatles

In honor of world IBD day and in honor of my 28th trip around the sun today, I’m reposting one of my favorite posts about my IBD story. I will never forget how this disease makes me feel. I will never stop being grateful, and letting others know they aren’t alone.

Been doing a lot of listening to the Beatles and anything on the Beatles Pandora station lately.

Here Comes the Sun always brings me to tears. Good tears. Something about the smiles returning to the faces, it seems like years since they’ve been here. I can feel that. And it’s such a good feeling.

Man, this last month has been…not describable in one word. Not really describable in one post either, which is why I haven’t been sitting and writing lately. Shame, shame, for I really wish I would have documented more. But I remember. I remember sleeping, or trying to sleep sitting propped up on my mom’s couch with a million blankets, only to throw them all off of me to sprint to the bathroom 6-7 times a night. Laying there with my hands hovering over my stomach, praying and pleading with God to make the cramping pain just stop so I could sleep. I remember feeling such loss and loneliness every time my boyfriend would go home after coming to visit me, just wanting so badly to feel better and be there with him, helping him with the purchase of our new home and packing and moving and just wanting my life back.

Little darling, it’s been a long cold lonely winter
Little darling, it feels like years since it’s been here

I remember the look of exasperation on my mom’s face when I wasn’t getting better, and the look of love as she made all of my meals to try and get some nutrition in me, and her talking to me about how important it is to have faith, and God would get me through this, He would answer our prayers. I remember her sitting in the car and praying with me for good news before we went in to my colonoscopy. Praying for answers, for results, for improvements. I remember her telling me that I will get better. That I’m an overcomer. And telling me it’s okay to cry. It’s not a sign of weakness. It’s a sign of strength. I remember her packing my hospital bag, buying random items from the gift shop to make me smile, taking care of my dog and bringing me water or pedialyte or blankets whenever I needed it.

Here comes the sun, here comes the sun
And I say it’s all right

I remember my dad sitting by my bedside in the atrociously uncomfortable hospital chairs. All day. Every day I was at the hospital that he could be there. Even when I was just sleeping. I remember how tired he looked. How he drove around aimlessly and prayed for answers, and pondered unanswerable questions with me. What causes this disease? Why do I have it? What are we going to do about it? When am I going to be better? How can we get other people to understand this? What’s the bigger meaning beyond this? I remember him going for walks with me down the hall, and joking with the nurses.

Little darling, the smiles returning to the faces
Little darling, it seems like years since it’s been here

I remember the nurses. The good ones mostly. But I also remember the one that blew up my vein when giving me a steroid infusion. And the one that said I was admitted for IBS. (IBS and IBD are two different ailments, one is a syndrome and one is a disease with no cure). I remember Jim, my favorite night nurse from  my first hospital stay at the beginning of the month, making jokes and giving advice on how to talk to the doctors to make sure I was heard. I remember on my second hospital stay, him coming to tell me hospital ghost stories and making jokes while I was getting emotional from the steroids and just not having any answers or improvement. I remember my favorite day nurse Jannell with her poufy hair and outspoken voice, telling me that I was one of the sickest patients she’s ever had, calling me Jack and telling me stories. I remember waking up to her Sunday morning telling me I needed blood asap and we were going to be doing a blood transfusion today. I remember being scared and sad and she told me everything was going to be okay, that she would be here the whole time and that I had choices. That it was going to be a good thing and she would be there the whole time.

Here comes the sun, here comes the sun
And I say it’s all right

I remember the changes in the medications. The discharges. The parasite. The antibiotics. The stomach acid burning. The we’re going to do remicade. The no we can’t do remicade until you’re stable. The phone calls from my doctors cell phone that I needed to make myself available to be admitted to the hospital. The colonoscopy that was useless because I was too inflamed. The TB test that was incomplete because I didn’t have a baseline to compare it to my immune system was so shot. The chest x ray. The blood draws. The IV team being called because I have terrible veins. Baby needles. Poke after poke after poke after poke. The waking up to check vitals. Low blood pressure, high heart rate, danger of organ failure. Blood loss. Cramping. Tears. Weight loss. Worry. Treatment plan change. New doctor. Infectious disease specialist. Lifelong medications. Steroid infusions. Steroid pills. Night sweats. Sharing a bathroom with other patients. Not making it to the bathroom on time. IV poles. Unable to stand in the shower on my own. Passing out while buying dog food. Collapsing on the stairs into the house when my legs gave out from under me. Shaking. Scared.

Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes

I remember the night my boyfriend came to visit me at my mom’s house in the evening. I remember when he looked me in the eye and told me “I need you to get better. Now. I miss you.” I remember his text messages telling me that he was always going to be here, that even though I am sick now, and not to undermine my illness, but this is part of life and we will get through it together. That he’s going to be there for me in the good times and the bad. That we’re a good team and when one of us needs the other one to be strong we balance each other out. I remember getting strength just from holding his hand. I remember just being held in his arms when I was able to move into our new home. Just being so grateful to have time together, to be able to have our new home, to relax and to heal and to make memories and be together. I remember sitting outside and crying just tears of joy at how lucky and blessed I am to be here and able to experience these moments of love and to just feel happiness.

Little darling, I feel that ice is slowly melting
Little darling, it seems like years since it’s been clear

I remember the prayers. I remember my grandma coming to visit me at my mom’s house and crying on the couch with me. I remember her telling me that she does her walks in the basement and says her prayers. That she won’t stop, ever. I remember my aunts sending prayers and prayer chains and being on church lists. My grandma’s brother even did a whole sermon on me. I remember the novelas, my grandma praying every hour on the hour for my healing. Saying she won’t give up. I remember the prayers and visits and emails and texts from wonderful friends that I now consider family, bringing laughter and cheer and Golden Girls cards and books and magazines, and just checking in daily to see how I’m doing, sending pictures and memories past to bring smiles. I remember the encouragement from social networks, people I have never met before praying and sending kind thoughts and positive vibes. The power of prayers. And they were answered.

Here comes the sun, here comes the sun
And I say it’s all right
Here comes the sun, here comes the sun
It’s all right, it’s all right

I remember getting discharged and my mom wheeling me out to the car to my waiting dog, and how he put his head right on my shoulder and just hugged me. I remember being weak and unable to walk through the grocery store, riding an amigo to get food. I remember sleeping and sleeping. I remember the first infusion. And the naps afterwards. And the feeling better the next day. Feeling stronger every single day. Doing a little more each day. I don’t want to forget it. I don’t want to lose sight of the beauty of this life. Because it is so beautiful. There is so much to be thankful for. I know that sick days can come again. I don’t have control over when this can happen. It’s not my plan, it’s His. But I do know that what I can do right now, is shine like the sun. And share love. And light. and hope with the rest of the world. Because it’s there. You just have to believe it.

Here comes the sun. It’s all right. 20140531_210240

 

Hope in Being a Warrior

“I am not the victim of the world I see.” 

-A Course In Miracles

 

I haven’t posted much in the last week because I was scared I’d start delving into the negative instead of staying above the water. I refuse to become a victim of this disease. I would rather be a survivor. But it’s been challenging this last week. So I’m going to acknowledge these negatives as what they are, and move on. Ignoring them is not good, and dwelling on them doesn’t do anything either. So bear with me as I exhale and let out what’s been going on this last week. I promise it will end on a light note.

 I had one full day of work on Wednesday but was unable to attend any of the other days since last Thursday when I left because I almost had an accident. I work in a call center and if I have a sense of urgency, it’s not simply so easy to run to the bathroom when someone is on the other line and you can’t place them on hold. In that instance, I made it but I went home immediately after. I’m scared for Monday. I’m starting to feel a little better and the bathroom trips are lower, but it still scares me. It felt like failure. I’m a good worker. I can do my job well, and I know I have opportunities for advancement. But I have to take time away for myself to heal, and because I am incapable to doing my job fully while I’m flaring. It felt like weakness. Aside from the embarrassment of letting it all go with a coworker in the stall next to you. But I’m pretty much over that. Judge me, please. At this point, grossing someone out from the symptoms of my disease is barely a blip on my radar. Yeah, I’ll blush and be embarrassed, but I would never wish this on them. So let them think whatever they so chose.  

This is the first time I have ever been this sick. There has been blood in the toilet for the last year, but the bleeding and cramping and weight loss and sever flare has never occurred until these last 3 weeks. So the reality of it all has hit.  I have an autoimmune disease. My body attacks itself, in my case my large intestine which causes it to inflame and creates bleeding ulcers. I have a leaky gut and my body is having a hard time absorbing nutrients. I’m on hospital watch until this Thursday, if I show any declining further in health I am to go straight to the emergency room. Talk about scary stuff. And the steroids that I tried so hard to avoid are part of my hope in healing. My back and hips ache like I have the flu and I look like a ghost. However, the emotions are not as bad as I thought they would be, so far at least. I cry at commercials, or songs, but I haven’t over-reacted or had any rage attacks. I cried for a good thirty minutes the other day, but I would call those legitimate tears at the frustration of this disease, not steroid induced. 

I haven’t been able to get out and do anything much beyond going to the grocery store for toilet paper and soup bones or going to my moms. I’m scared to go out further in public because my auto immune system is shot. My roommate has been sneezing and I’ve been spraying lycsol on every surface I can find. I’m terrified that a cold will send me to the ER. I had to cancel tea with friends for the same reasons, also due to the fact that I need to be near a bathroom at all times. Or at least near enough to run to it. Like I could run. My weight hasn’t been this low since middle school. My boyfriend says you can’t see it, but he can feel it when he hugs me. Just a little more bones. 

So, what do you do when you look in the mirror and just see a sick person looking back at you?

You see something else. 

Yes. I have an autoimmune disease. But I am more than my disease. 

I am strong. This disease will not keep me down because I am a fighter and I will keep getting back up. 

How am I fighting? 

I’m resting. I’m reflecting. I’m researching. I’m accepting. I’m changing. 

I took the time I needed from work to allow my body to heal and to avoid as much stress as possible. This is not weakness like I wanted to think originally. This is empowerment. I acknowledged that my body was not capable in that moment, and took the time away to allow it to heal as much as possible. This will allow me to come back and continue to do my job well instead of making myself worse. This is okay. 

When I was told that I am on hospital watch, it was shocking. I knew I was sick, but hadn’t really accepted it until that point. After being sent straight to the lab for testing, I went home and did a little reflecting on myself. This is real. I’ve made some adjustments over the last year to deal with this disease, but at this point, I need to say goodbye to my old lifestyle and start opening my heart to a new one. I spent that evening praying. Perhaps this is my second chance to do whatever it is that I’m supposed to do while I’m here. Perhaps this is my reminder that I’m here to share love with the world. It’s my second chance to do what I was made for. To fulfill a purpose. Perhaps the path I’m taking is the wrong one and I need to hop off of it for a while. Perhaps there are many better things waiting for me to discover. 

So, I’m making some small changes and doing a lot of reflecting. i’m saying goodbye to the things that don’t serve me any more. To taking days for granted.  And I’m saying hello to good health, to love, laughter and happiness. I’m saying goodbye to being a victim, and I’m saying hello to being a warrior. I know this won’t be easy. It will take constant effort to remind myself that I am more than this disease. I am not just an ulcerative colitis patient. I am a young woman who enjoys being with friends and family, practicing yoga, helping others, playing and snuggling her dog, reading, writing, exploring, learning and so many more things she doesn’t know about yet. And yes, I happen to also be battling an autoimmune disease. . 

How do you keep your disease from defining you?

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Hope in Support Systems

I have never been as sick in my life as I have been over this last week and a half. I’m starting to feel like there’s some improvement on the horizon though. I wasn’t able to make it to work today, but I did, so far at least, keep my bathroom visits under 10. I don’t know what the deal is but I seem to be the sickest in the middle of the night. Starting around 1 or 2 I’ll be up every few hours with some severe cramping and the usual toiletry images. This happened again last night but I was able to go about 6 hours today without a painful visit. Hopefully things continue to improve. 

I’ve been sipping on some bone broth daily, trying to get some nutrients. I swear this is a superfood. Thank you to @mangiapaleo for introducing me and @zucchiniandcarrots  for encouraging me to drink it (look them up for awesome paleo and autoimmune protocol dishes). Also thank you to everyone else on instagram and otherwise who has been encouraging my healing and sending positive thoughts and well wishes my way.  The floodgates of the IBD community support have opened since I started feeling so terribly, and I don’t know what I would do without this encouragement and cheer. Every single word helps and gives me hope that we will all heal. This disease, like any autoimmune disease is hard. It’s hard emotionally, physically, mentally, spiritually, it makes you think about every answer you had in your life previously and what you thought you used to know. It challenges you to see any sort of positive outcome when your in the depths of pain and depression. But there is light out there. And that support is out there. 

If you’re suffering from an inflammatory bowel disease, or any autoimmune disease in general, I really encourage you to reach out to support groups, online forums, Instagram communities or even other bloggers. I personally don’t have a Facebook but I’m sure there are support groups out there as well. There’s only so much understanding that your loved ones can provide. And believe me, I am blessed enough to have a very supportive, loving and encouraging support system. My family and my boyfriend have been my rocks through this, listening to me when I cried out of fear or pain, making me smile or laugh when I needed some light, calling to check in, or just wrapping me up in their arms when I wasn’t feeling strong enough. Even my dog has spent the last week snuggled up behind the back of my knees, offering comfort and love. Oh boy, here come the tears. I am so lucky to have and so grateful for all them. There have been times over the past few days that I wanted to just give up. But I didn’t. Mostly for them, because I knew that they were cheering for me. 

 Seriously though, you HAVE to surround yourself with love and beauty in these situations. If you don’t have the physical support system that I do, look elsewhere. I’ve made so many connections with my #ibdfamily on twitter, instagram and through this blog. Your family and friends can be there for you as you go through this, but it’s very hard for them to understand what it’s really like. They certainly try, but there is something to be said about talking with someone who knows exactly what your going through and can relate to your fears, side effects, pain and attempts to heal because they are going through it to. And I really think it helps when you can support them as well. We are all in this together, and the more we support each other, the more awareness we spread, the more positive impact we have, and the more opportunities we create for a cure to be found. 

“It is important that we share our experiences with other people. Your story will heal you and your story will heal somebody else. When you tell your story, you free yourself and give other people permission to acknowledge their story.” Iyanla Vanzant.

 

What is your story? What are you going through right now? How can I help give you hope?

Share it with me. 

Hope in My Body

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For the May Cause Miracles that I am reading, day 18’s affirmation is I am thankful for my body. This was a challenge for me today.

Today marks one year since I have been diagnosed with ulcerative colitis. April 17th, 2013. And I’m worse than I have ever been. I’ve lost 7 pounds in the past few days. The pain is incredible. Eating is ridiculous. The steroid enemas are not working. I’m going to the bathroom 10-20 times a day. I had to leave work today after almost having an accident.

I spoke with my gastro doctor this morning. She said it’s time. We’ve tried everything to avoid the oral steroids. We tried the lialda, the canasa, the uceris, the steroid enemas and we tried it all again. I went gluten free, soy free, and tried to stay as stress free as possible. But is it hasn’t been enough. Something inside my body just isn’t connecting with the healthy me I want to be. So today, I started Prednisone. And I’m hoping that it works. This was not an easy decision. When I got the phone call this morning that the prescription was being filled, this needs to get under control and this is the next step, I was very upset. I immediately started crying, outside in the driveway while letting my dog out. I felt so defeated. And scared. I’ve worked so hard to get my hormones under control, and I’m in a good spot emotionally, and this could totally screw it up. I tried so hard to see some light, and I just couldn’t.

So I called my dad. I tried to keep it together but as soon as I told him I needed a pep talk I just started crying again. And we talked for a while. I calmed down, and he reminded me how strong I am and how I’ll be able to get through it. I’ve tried everything. And yet I’m still determined. Maybe I won’t get the side effects. If I do, I’ll be aware of it. I’ll know that I’m being crazy because the drugs are making me that way. One step at a time. One foot in front of the other. I really don’t care about the moonface or the weight gain or any of the temporary stuff. It’s the emotional theatrics that I’m scared of. So after I left work, I went and picked up the prescription. I cried again. All the way home. And then I got home and went to the bathroom and keeled over in pain. And the decision was made.

This is supposed to be such a happy time. My boyfriend and I are buying a house. I’m doing really well at my job. I have a great life. Except for this damn disease. And I’m not going to have that be a reason not to keep enjoying my life. I want to be out there.

And that’s the problem. I haven’t been able to enjoy myself the last few weeks. And I told myself that once the disease starts controlling my life and I can’t control it, I’ll go to the oral steroids. It’s time. I want to be able to hang out with my friends, happily. To go on road trips. To enjoy my summer. To work on our new house. To take my dog for walks. To do yoga. To be a good girlfriend, daughter, friend, person to myself. And I can’t do this when I’m stuck in the bathroom. Or laying on the couch. Or sleeping. I need to heal. And if this is what I have to do to get there, then I’m going to do it.

So, today I am thankful for my body. My body is a monster But it’s not an evil monster. It’s so strong, it kicks it’s own ass. It’s a ball of light that is meant to be shared with the world. It’s a vessel for healing, for sharing hope. For inspiring others. For living and loving and laughing and feeling the joys of life from the tips of my toes to the roots of my ever changing hair. It’s not for hiding away inside. It’s not for dwelling in pain. It’s not made to feel sorry for, not to deprive of joy. It’s made to nourish. To provide. To excel.  My body provides a haven for my soul. It allows me to love, to feel, to cherish. It gives me opportunities for change. It challenges me. It is beautiful. And it deserves to be loved.

And love is what it’s going to get. So, today, one year after diagnosis. I begin the drug that I tried for the entire year to avoid. I talked to my boyfriend about it when he came home. I get concerned some days that maybe this is too much for him. That maybe this is going to be the straw that breaks the camels back. And then he says “Anytime I start to get bothered by it, I think about how its 100,000 times worse for you, and that’s enough for me to deal with it. You’re so strong. You need to take care of you. Don’t worry about anything else.”

And then I realize that these are the thoughts of my ego. It tries to convince me that I’m not worthy of love, that I’m too sick, too many problems, to much to handle. That I’m a hot mess. Well, ego. I’ve got news for you. Your time for making me feel unworthy and sick is over. This year, this year I’m going into remission. The steroids are going to work. And the Paleo diet is going to keep me there (I’ll touch on this later). I have the ability to heal. This isn’t saying it’s going to be easy. It might not be. But it’s time

I’m not going to stop fighting for my health and happiness. I have hope in my body and my ability to heal.

Hope In the Battle

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Yesterday started beautifully. I woke up with energy, took my yoga mat out the back porch and spent a good hour flowing and connecting. I had plans to get some grocery shopping done for the SCD diet and do some packing/purging of items in preparation of the move, as well as to get out and enjoy the beautiful weather. I was happy, blissful, and feeling like the medications were finally working. Around one in the afternoon I lost my energy, and the evening ended/proceeded with the worst episode I’ve gone through since my diagnosis.

This is the thing with ulcerative colitis. It challenges you. It wants to beat you.

It says “Try to keep that same blissful feeling,” and laughs while inside the pain is so intense you’re whispering profanities to yourself and squeezing your wrist just to bear through another cramp.

It dares you to not be frustrated when you have to cancel your shopping trip with friends because you haven’t been able to go more than a couple hours without an urgent bathroom trip.

It taunts you to feel energized and get out of bed in the morning when you were up every few hours the night before, rushing to make it to the restroom without waking anyone else up.

It tries to steal your confidence when you look in the mirror and see this gaunt, ghostly figure with dark circles looking back at you. It laughs when you step on the scale to discover you lost another 2 pounds overnight.

It smiles when you still have a terrible taste in your mouth after brushing your teeth and sees the tears in the corners of your eyes.

It wants you to feel the shame burn on your face when you stand in line at the pharmacy with your preparation H wipes and sensitive toilet paper and the clerk tries not to make eye contact.

It may try, but it doesn’t have to win.

There’s always another way to look at things. I’ve felt the worst that I have in a very long time over the last 24 hours. My bathroom trips are in the 12-17 times per day. Everything hurts. I shed a couple of tears of frustration this morning.  That doesn’t mean I’m weak. It doesn’t mean I’m broken. I’m battling. I’m still here. I can fight back. Here are some of my strategies for the war tactics of UC.

The pain is temporary. When it seems overbearing, I try to distract myself with other thoughts. Read a book. Set some goals. Count the tiles on the floor. Make plans for the new house. Hum a song. Think of something better than this moment.

Good friends understand when you have to cancel plans. Start planning another trip. Or a movie session. Or just text. Whatever I can manage.

Don’t make it the disease’s choice whether I sleep more or get up. It’s my choice. It’s not “the ulcerative colitis” that kept me in bed. It’s that I was tired and needed more sleep. Or I’m taking it easy today because I’m exhausted. My choice. Don’t give power to the disease.

Forgive myself for having the ugly thought. It’s not true and it’s not helping anyone to feel sorry for yourself. Yes, this sucks. But I have the power to choose how I’m going to feel about it. Put on a little makeup, and a smile, and you’re good to go. Maybe do a face mask or paint your nails. Show yourself some love. Don’t let this steal your joy. What do you really want today? How can you make that happen?

If the tears come, let them. This is hard stuff. You’re going to be sad. You’re going to be frustrated. Things aren’t going to go your way. Life is not as you knew it before. But you have a choice. You can react in a manner that makes it better, or you can make yourself feel worse. Let the tears fall, then figure out what you’re going to do next and move on.

We’re taught not to talk about our bowels or anything that comes out of them. It can be embarrassing buying preparation H and soothing wipes and keeping it all in a cupboard with your enemas and rectal suppositories next to your boyfriends cologne. Those shameful terms are ones that no one wants to hear or have talked about. But talk about it. Make jokes if it makes it easier. If you keep it to yourself, the disease will stay inside you. The more awareness the better. One of my favorite quotes from Jillian Michaels “Get comfortable with being uncomfortable.” You never know, something you say might inspire more research, might reach someone who is alone in this disease, or may bring some insight to someone who has no idea what an inflammatory bowel disease does.

Ulcerative Colitis can try to steal my dignity, my confidence, my strength, and it can try to do a lot of things to break me down. But it won’t win. I have hope. I am strong and I am determined to beat this.

I don’t know what brought on the extreme episode. Possibly the piece of Guyere cheese. It was on the SCD safe list, but the extreme pain started after that. I’ve decided to add dairy to my list of restrictions and move forward. I just ate some homemade chicken broth, said a prayer, and am waiting to see how that effects me. Other than that, it’s just been water today.

One foot in front of the other and you’ll keep moving forward.