Gratitude Challenge-Days 10-14

Sorry for leaving you hanging for the weekend. The negativity on social media was starting to seep into my brain and I had to take a bit of a hiatus.

Feeling refreshed and back to sharing good things today, so let’s get started.

Day 10- Family

Day 11- Animal

Day 12- Yoga

Day 13- Mornings

Day 14- Evening.

Flip  it and reverse it.

My perfect weekday evening includes coming home to a clean kitchen, eating a delicious dinner, watching the news or a show with my husband, and relaxing with a meditation or a soothing yoga practice. Today I came home to a clean kitchen and dinner already to be eaten and I’m really grateful for that.

Lately I’ve been turning to the TV for my source of entertainment during the evening these days, but I’m working on this. It’s just so easy to sit in front of a show and get sucked in to doing nothing. Sometimes it is exactly what I need, but I don’t think it’s best to do it all the time in the long run. I’m trying to incorporate more self-care rituals into my evening routine in order to get the best nights sleep so that I wake up refreshed in the morning. My favorite way is with a really gentle yoga session, a yummy candle, and a bit of journaling and goal setting. Then crawling into a made bed with an extra blanket and fuzzy socks and my dog curled up at my feet. Perfect.

My best morning includes a workout, followed by a shower with enough time to let my hair air-dry without having to rush it. I love to have a cup of coffee or hot water with lemon while watching the sun rise and catching some early morning puppy snuggles. Best way to start the day.

I’ve already covered yoga a few times here, but it’s really been a healing experience for me once I was diagnosed with Ulcerative Colitis. It taught me the importance of the breath, of taking a moment for myself, and of  paying attention and listening to my body. It’s changed my life and allowed me to be more present. I was really good about staying in a routine and doing it every morning but with my work schedule currently I have gotten away from it. This will change again in a few weeks, but I’ve definitely noticed a difference when I don’t practice regularly. I have a lot of anger and frustration that resurface easily when I haven’t been practicing. Yoga just helps me deal.

I’m most grateful for my furbaby Sam as an animal. I was blessed enough to grow up knowing the companionship and loyalty of a dog, but this little guy has been my BFF for the last 8 years. I got him when I moved into an apartment by myself during college, it was a small, small, small, bed came out of the wall don’t walk around outside in the dark type of place. And he kept me company from day one there until now. He and my husband have a good bond now, they are actually snuggled up on the couch together as I write this and Sam even interrupted the father daughter dance at my wedding (lol). He’s my best boy.

Which brings us to family. I’m an only child, but I have a pretty close extended family, and now a group of in-laws to add to the mix. There are so many things I could say here, but I’m just going to say that I’m one of the lucky ones. My family is amazing. Everyone is a bit different, and we’re all a little nuts, but we love to laugh and smile and every single member of my family knows how to live. There isn’t a life wasted, or a moment of regret. There’s truth, love, laughter and always lots of food to go around no matter where we are. I could spend hours going on about them, but I’m just going to say I’m absolutely blessed for the family that I do have and I don’t take that for granted for a second.

 

Thanks for bearing through this ramble of a post! 🙂 I’ll be back at it tomorrow with regular posts for the rest of the month. Have a great evening.

 

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Hope and Guilt

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

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

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

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

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

But I am limited right now.

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

I need a plan.

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

Step one: If you’re tired, be tired.

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

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

Step two: Determine what is important to you

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

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

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

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

 

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

WORLD IBD DAY- Hope in the Beatles

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Hope in 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.