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?

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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 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.

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.