Hope in my MRI scan

* warning* this is a long post
If you are looking for my tips on how to prepare for an MRI and don’t care about my experience scroll to the bottom. Thanks for reading!

I wanted to share my MRI experience last night in hopes to prevent others from going through what I went through. I was told that this would be a 30 to 45 minute scan, with no contrast but lots of breathing and holding my breath.

First off, let me say that I went into this with complete confidence. I’ve had an MRI on my back years ago and knew what it was like and was prepared for it. However, this turned out to be an entirely different experience.
I arrived at the hospital at 645 for my appointment at 7pm. I checked in, completed a form and sat down in the waiting room.
At 730 a tech came to get me and escorted me to a locker room. They were out of scrubs so she had me wait while she went to get some for me to change into. When she came back she showed me where to change and lock up my personal belongings and said she would be right back to escort me to the MRI.
Scrubs are so warm and cozy. Not. I was freezing.
Here I am modeling my new outfit.

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I paced the locker room that i had been left alone in while waiting, trying to stay calm and ease my anxiety. 30 minutes later another nurse came in to get me, not the original person. She acted surprised that I was still in there and asked if J* had been in there yet. She said she didn’t know where the original person was but that she would take me back even though I wasn’t her patient. This person (we shall call her S*) ended up being my angel that night, but at the time I was a bit frustrated for being forgotten about i had been at the hospital for over an hour at this point.  When we arrived back at the machine she asked me if I had been told how this would go. I said no, I had only been escorted to the locker room and told to wait there.
She had me sit on the bed that goes into the machine and handed me some earplugs. She got me a warm blanket and then the other nurse (j*) showed up and tosses a bag of fluids and contrast in my lap.
“Okay! Ready for your IV!?”
uh. What?
No one said anything about an IV.  The phone call prior to coming on to the MRI said I wasn’t having any contrast. I had no prior knowledge of this.
I felt my heart racing as I stared at the huge needle that had been dropped in my lap. My veins are poor and I had to stop drinking water at 2pm that day per the phone call for my scan. I knew I was dehydrated and would be a hard poke, and hadn’t prepared for it. You just don’t drop an IV bag and needle in a person’s lap without a warning. Especially me. Don’t do that to me with needles. I work hard to decrease my anxiety and it takes a lot of preparation, dropping a needle in my lap doesn’t help anything, especially right before I’m about to be stuffed in a small machine.

“Are you sure you have the right patient?” I asked. “I was told this would be a no contrast MRI,  just lots of breathing.”
“Nope,” she said without even checking. “Your orders changed and you’re essentially getting two MRI’s today.”
S* saw the sheer panic in my eyes and asked if I was okay. I stated that I’ve had some really terrible experiences with getting IVs before when I’m not prepared or hydrated enough and that this was a shock for me. I then went on to say I needed to be heat packed and needed a baby needle and they may need to contact the IV
J* interrupted and said she wished I would have told her this earlier so they could have worked on it already. (When would i have done this? When you forgot about me in the locker room?) She then said she would try a couple times and we would call the iv team if necessary.

Thank God S* took over and said she used to be an outpatient surgical tech and felt confident that she could get it on the first try. She asked J* to get a smaller needle, told me to lay down and breathe and try to relax.
She got it on first poke.
J* asked me why I was there, I explained that I have ulcerative colitis and the MRI is to check for bile duct cancer.
She asked when I went to the lab to treat my “colitis” and I replied it’s ulcerative colitis, not simply colitis, and I don’t go to the lab, I go to the infusion center and it takes a few hours for my medication.
She then shrugged, gave me ear plugs and had me lay down, strapped me to the table and put a brace like thing over my stomach. She said to stay as still as possible and said to listen to the prompts from the machine and that she would guide me through the whole time.
She left the room, and S gave me the panic button to push in case I had any problems. She put my arms above my head and a bolster under my legs and heard her leave the room as I  breathed deep and waited.  And waited. And waited.

And finally J came on the overhead and said the table is going to move, and in I went. I closed my eyes and took deep breaths.
The machine came on and told me to take a deep breath, let it out, take another deep breath and hold it. I held my breath while I counted, sometimes to 5, sometimes to thirty five until it told me to exhale. And it would make the sounds like the alarm and shake and beep. And I breathed. And this went on for what seemed like forever. My hands and toes were tingling and numb from being so cold, and I was started to get anxiety because I knew I had been in there a long time but had no concept of how much longer it would be.
J* came on the speaker and said I was doing great and they were going to start the contrast now, not much longer. I thought the contrast had already been in me. This must have been about an hour after we started. The contrast stung a bit as I felt it travel up and back down my arm again. I breathed, and tried really hard not to cry as I wondered why I had to go through this. I just kept thinking of my fiancé and going to California on our honeymoon and being somewhere warm and my family.
The machine had me hold my breath and breathe, hold my breath and breath for maybe 5-10 scans and then one scan lasted for maybe 10 minutes, no status update from the S* or anything. Finally it went silent. I lay there and counted to 100. Nothing happened. I said “hello? Can anyone hear me?” Nothing. Silence. My shoulders were aching, my feet were numb and my hands were tingling and I was starting to think they forgot me. My heart sped up and I tried to focus on remembering breathe. Finally she came on the machine and said one, maybe two more scans and we were done. Okay. I thought. Can’t be more than 5 minutes. I can do this. And closed my eyes again and breathed.

I heard the door open. I’m done!  I thought. I made it! And I looked up and backwards a to see S’s face. She said they entered the numbers in wrong and needed to redo the last 4 scans. (Wtf?!) She asked if I was okay and I said not really. I’m freezing and really uncomfortable and ready to get out. She felt my hands and said they were ice cold and got me a warm blanket to go over them and around my head. I asked her how much longer and she said about 15 more minutes. I breathed feeling the tears form and said okay.
I made it through the next 15 minutes dreaming of vacation and going through everything I am thankful for. And crying.
Next,  it was silent again for a few minutes I stretched, and waited thinking finally (again) it was over.
Then J* came in and said okay hun we have a few more to do, we can’t seem to get the machine right but you are doing just fine keep staying still, ok?
I was done. I had been in there for who knows how long at that point and this was the third time she said it would be one more time. I said nope. I’m done. They can use what they have at this point. 
So she left the room and talked to whoever and then the machine scooted me out and said she said well I guess it will be good enough. I was shaking through my whole body. S* came in with a blanket and wrapped me up. She then took out my IV and realized J* had taken away the cotton balls so there was blood dripping down my arm. S* explained to me what had happened during the scan and that I had been in there for almost 2 hours and was very strong. She said it was a very hard test, essentially two tests and I did great at staying still. She apologized for how long it took and that I wasn’t prepared for it and walked me to the locker room. It was 10 pm by the time I got to the locker to change my clothes and then had to wait another 20 minutes for the cd to be printed. I called my fiancé in tears, and drove home on the snowstorm.

If you read this whole thing, thank you. I wrote this in hopes that someone else preparing for an abdomen/bile duct MRI will know what they’re in for. So they will know it’s not a 45 minute scan, it’s about 2 hours. You will have an IV, you will have to hold your breath a lot and you should wear really warm fuzzy socks. Ask for extra blankets. You might not think you’ll need them when you get in there, but it only gets colder.  Don’t be afraid to hit the panic button if you need a break. Have someone there to take you home because even if you think it’s no big deal, the reality of it is you could benefit from the support.
And wake up in the morning feeling thankful. I woke up today thankful for my supportive,  loving fiancé who made me tacos and paleo tortillas and kept the warm and waiting for me to get home. I’m thankful for my health insurance that allows this test to happen. For my family. For the sun being out today. Let the experience remind you of what you have and what you are capable of. Don’t let how someone else treats you rob you of joy. You are more than a patient in a machine. You are a person,  and I bet you’re an amazing person. Remember that.

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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.

 

Hope Warrior-Headbands of Hope

You guys. This charity is awesome. Not only do you get a pretty awesome flower headband for yourself, you get to send a flower headband to a little girl that is battling cancer, and the site donates a dollar for every headband purchased to a child cancer research charity!
I found Headbands of Hope on Instagram @headbandsofhope and was immediately inspired, and the youtube video in their about section talks about how everything starts with a spark! Exactly how I feel about the power of hope. Just a little spark can have so much power.
You can find out a little bit more about the founder on her blog here:

 

Go buy a headband! Or two! http://www.headbandsofhope.com

I bought these:

Flower Crowns

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 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 Enemas?

Yeah. I said it. Enemas.It’s okay if your disgusted by the mention of the word, or the process. I was too. But in that full brown paper bag lies my months supply of hope. Hope for remission. Hope for something that works. I have 26 days for these little suckers to do their job before we move on to the big biological drugs. So let me hear you say it.. Enema’s for the win!

I started reading the book May Cause Miracles by Gabrielle Bernstein this morning. For those of you who haven’t heard of or read it, it is a 40 day journey to basically change your mindset and stop being set back by all your fears and instead choosing love and happiness. I’m a sucker for reflection and challenging myself to gain new perspective and I thought a book with that kind of title was pretty much calling my name. Day one was all about being conscious of when fear wins throughout your daily interactions and seeing when fear was chosen over love. Just observing.

Among other things, I was a little surprised by how scared I am of what people think. But looking back, and even in my current situation, my fears about others thoughts controls a lot of my life. And this blog is a huge step against that fear.

I’ll be honest. I was hesitant to post about enemas. It’s not really something that the general population wants to hear about. It might now be something that even my family or friends want to hear about.   But I’m not writing this blog for the general population. And I’m not necessarily writing it for my family or friends. When I first came up with the idea for it and started brainstorming, I began to worry about what people who are closer to me might think. Would they be repulsed, think I complain too much, would they be supportive? Would I be ashamed to put out the details of what I’m going through? The bowels of my thoughts? I’ve ruined dinners before when talking about my new normal, times where I thought the floor would melt away from how hot my face felt from embarrassment for giving a true answer to a question someone really didn’t want an answer to. I never want to see the look on that persons face again. I felt like a monster.

I talked with one of my friends that is also strong enough to kick her own ass (autoimmune disease joke). She has lupus and has been dealing with side effects of medications and flare ups for the past few years, but always kept her sense of humor. We discussed how hard it is to be judged and hurt by people you think would understand. She said screw those people. This is the way your life is now and not everyone is going to get that. It’s up to you now to accept them for who they are, even if they can’t understand you.

So, it’s OK if you’re grossed out about my colonoscopy, or blood, or when I make a weird face and wince because my insides are cramping up in indescribable pain.  It’s okay if you think going gluten-free and soy free is stupid.If enemas give you an “I just ate a lemon” face.  It’s okay if you don’t like what I’m writing. I understand. I’m not mad at you for it.  This just isn’t for you.

I’m writing it for people who are down in the dirty, disgusting, embarrassing and downright scary parts of life and are looking for a little something to pull them a couple of inches further away from sinking into the mucky darkness. Like me. Like my friend with lupus. Like anyone with a chronic illness. Or anyone else who finds themselves in a drab situation.

So, I’m going to continue laying on my left side for 30 minutes twice a day I’m supposed to, and hoping on enemas.