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- NY Smile Movement

Browsing through #randomactofkindness (RAK) on instagram one day and I came across @nysmilemovement. A whole year of RAK’s documented. How cool. And what an impact they’re having! From leaving lottery tickets in grocery stores for strangers to find, to volunteering to pet sit, to giving away arcade tickets, smiles and hope in humanity are being shared everywhere, Join in the movement! Get to know a little more about Alex and a little more about Alec below, and then find @nysmilemovement on instagram and @ROCsmilemovement on twitter! And then go spark some hope with your own SmileMovement! Let me know what you do in the comments!

How did you come up with the idea for 365 days of Random Acts of Kindness?

Earlier this year I saw a couple of inspiring posts throughout the week on social media and spent some time pondering the effects that such kind deeds can have on the world…I thought up my first idea soon after and decided to attach quarters, with kind notes attached, to vending machines at a Tops market near my house.  The joy I got after seeing the “free candy recipients” post a picture of their combined smile to my feed was so contagious I couldn’t stop!  I then made a personal goal to perform the 365 days of Random Acts of Kindness and the rest is history!  

What project/activity has impacted you the most so far?

I can’t choose just one so I’ll give you my 3 personal favorites! 

1) I got contacted by a mother who really wanted to give her son WWE tickets for his birthday.  I had just sold the tickets however, but had an opportunity to win another pair that night if I somehow won another 16 person competition at the nearby bar that night.  I ended up winning the whole thing and surprised the mother, and her son, by giving him the tickets for free on his birthday! 🙂 Seeing his smile was absolutely priceless.     

2) Shoveling out cars on my street for 2 hours after a snow storm so my random neighbors could get out easily in the morning 🙂 Actually putting in all that sweat and effort for others felt great to know I saved each of them that task. 

3) Personally Messaging all 700+ of my followers has been amazing so far.  Spending the time to view most/all of the pictures on each account and tailor each message to every person has brightened dozens of people’s days.  I approached this with the mindset that “You never know quite how rough someone’s day/week/month could be and how much that person could benefit from the tiniest thoughtful gesture of kindness to show you’re thinking of them”.  I’ve connected with 230/700 people so far that I’d normally never interact with otherwise.  Of the people that responded, SO many of them said that I had made their day and that “you have no idea how badly I needed this…thank you”.  Over and over I’ve seen that response this past week and it just reemphasizes how important such a small gesture can truly be.  On top of that, I’ve gotten to know so many of my “followers” that I’ve never talked to before and have found many things we share in common after lengthy convos.  It. Has. Been. Great!! Can’t wait to conquer the next 2/3 :] 

Rules to live by?

I grew up with the golden rule and have been stickin’ to it ever since (thanks Mom haha).  Treat others the way you’d like to be treated.  It’s that simple! 

Quote you turn to when you need to be uplifted:

“No act of kindness, however small, is ever wasted”. 

Music/Song:

“Don’t worry, be happy” 🙂 Also, Funk. Funk warms the soul and gets the people movin’! haha

Activity that lifts your spirits:

Random acts of kindness ALWAYS lift my spirits whenever I’m having a crummy day.  Putting a smile on the face of a random person, or even a friend/family member, is priceless.

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

For so many years of my life I never truly understood the power, and meaning, of giving with the intention of getting nothing in return.  Now, that is how I live my life.  Many of the RAOK I do, I don’t even get to see the reaction of the people who end up receiving them.  I just try to do everything with strong faith that they’ll reach a person who needs it, (hopefully) appreciates it, and (hopefully) pays it forward.  I believe in “creating waves”.  The power of the ripple effect that follows from a single good deed can be tremendous!  The best part?  We all have that power!!

What would you do with a million dollars?

I’d travel for awhile and then invest a big chunk into my big RAOK career idea that will be very well spent towards inspiring & uplifting the country if it all pans out! To be continued… 🙂


Who do you admire?

I admire anyone and everyone in this world that lives their life with undeniable passion working towards their dreams.  Anytime I see someone like that I admire their drive and it reignites the fire in me to keep doing the same!

What is your mission?

A huge goal of mine is to inspire people across the country to start their own “SmileMovements” in every state.  I want kindness to become such a common gesture that it’s rare to see someone not smiling!!

My mission is to make my stamp on this world by doing everything in my power to make it a happier place to live.  One small act at a time.  One small city at a time.  One state at a time.  One Country at a time.  Bit by bit I will be spreading kindness and inspiring people to pay it forward as long as I live. 

 

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 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.