Hope and prayers

I really don’t know where to begin with this post. I’ve been putting it off for a the past few weeks. Why? Well, nausea for one. I haven’t been able to look at a phone screen or read much for the past few days. But the second reason is it’s uncomfortable.  Writing it down makes it all real. Makes me face it. I want to punch it in the face. I want to kill it. I hate it. But I wouldn’t let anyone else fight this battle for me. Some days I look in the mirror and have no idea where I get the strength to stand. But God gives it to me. And I know He is going to heal me. I just have to keep the faith.
Currently I am blasting ocean waves through my headphones to try and tune out the puking of the insanely sick person they roomed me with. Yep, I’m back at the hospital.  Steroid injections and fluids.  Last chance to try for remission before we go to remicade. This time they have me hooked up to an iv pole so I’m more restricted.  Oh, how I want my life back. 
But nevermind. I’ll get it back.
So, the point of this was to provide and update and some Hope in Prayer. Let’s get back to that.
2 weeks ago I was admitted to the hospital for steroid injections. On Day 2 we discovered that the reason I had not been responding to treatment before was because I had a parasite! It hadn’t shown up on any test before, and we have no idea how I got it. GIARDIA.  Somewhere along the line I drank some contaminated water.
So, we did another day of iv steroids to no avail and sent me home with a flagyl prescription and pill steroids, on top of everything else. Flagyl did not react well with me. I had so much stomach acid, my whole body ached all the time, diarrhea, blood loss, weight loss, and mix in the emotions of not healing, missing work, having to stay with my mom because I couldn’t take care of myself, missing out on the celebration of our new home with my boyfriend and my doctor changing the treatment plan every time I leave the office. I am a mess.
Last Friday, my GI wanted a colonoscopy. I knew it wasn’t a good idea. I was still on the Flagyl.  My insides we’re a mess. But she insisted and I agreed and went through with it. She was only able to see about 25 cm. Nothing good.
So, she decided my only option is remicade. And we scheduled the testing that was needed to proceed and scheduled the infusion. I sent out a mass request for prayers from my family about what the right choice was and what I needed to do going forward and just asking for God to heal me.
The next morning, the hospital called and said the tb test results were indeterminate. Thing is, I never had a TB test. The doctor called it “serendipitous” and called me and said maybe we could go back to the original plan of steroids and imuran instead (anyone else seeing the roller coaster I’ve been riding!?)and we would talk more about it at my appointment on Thursday.
Thursday comes around. We go to the appointment. I’m weak. I weigh 105 lbs. She says I have a choice. Admit to hospital for steroid injections or go straight to remicade. Because the injections had not worked previously, I chose the remicade option. And we left feeling confident and went to the hospital for a chest xray,  cbc and tb test.
An hour after we went home, my doctor called me from her cell phone and said that her gut is saying I really need to be admitted for steroid injections. And her partner thinks so too. I couldn’t believe it. Another change in plans.
I spoke with my family.  And we all agreed maybe we’re supposed to give this one last shot . Maybe we need to exhaust all options. So I called her back. And the next day, today, I’m admitted.
They had to call the iv team to get me started because my veins are all shot. But I’m hooked up with fluids and steroids now. And now we wait. And we hope. And we pray. Pray for healing. Pray for understanding. Pray for Hope. I’m so emotional from the steroids I’m crying at everything from a cat food commercial to song lyrics to a kiss from my dog before I left today. I miss being happy. I miss sleeping next to my boyfriend. I miss driving my car and going to work. Feeling accomplished. Feeling strong.
But I know I’ll get back there some day. God has me in his arms. I’m not going to ask why I’m going through this. I’m just going to get through it. One teardrop, one breath, one step at a time.

I do apologize if this makes no sense and I’m all over the place. It’s just how I am right now. Thanks for listening, and for your prayers if you make them. I need them. And I will pray for you too.

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Hope in Being a Warrior

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

-A Course In Miracles

 

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

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

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

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

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

You see something else. 

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

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

How am I fighting? 

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

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

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

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

How do you keep your disease from defining you?

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Hope in Support Systems

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

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

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

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

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

 

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

Share it with me. 

Hope in My Body

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

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

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

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

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

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

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

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

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

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

Hope In the Battle

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hope in Miracles

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“Even miracles take a little time.”
The fairy godmother herself.

I started my miracle journey a few days ago and already am noticing all these good things in my life. Ironically it has been one of my most painful weeks with the dear friend ulcie colitis cleaning out her house again and just creating chaos. But, as I begin to consciously choose love over fear and realize what moments are not created by love, life becomes more beautiful.
Sometimes it just takes a fairy godmother to remind you to be a little patient, and even a pumpkin can be a beautiful carriage.

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.