How to Enjoy Your Wedding Day When You Have A Chronic Illness

I’ve received a lot of requests for this post over the last year, and figured our first anniversary would be a good time to answer those questions. Here are my top 5 tips for enjoying your wedding day despite a chronic illness.

  1. Make time for yourself. 

    Eaton Rapids Wedding Photography - Millers Dairy Farm - Phil Black Photography
    Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography

The morning of our wedding was absolutely gorgeous. I spent some time alone in the morning before everyone arrived at the house doing yoga, sipping on a cup of coffee and writing a letter to my soon to be husband. (Instead of sand or candles, we decided to write each other a letter and to put it in a box together to open on our first anniversary. Every anniversary after we will write another letter and open the one from the year before.) I watched the sun rise over the river, wrote in my journal a bit and basically gave myself a few moments to just be.

Eaton Rapids Wedding Photography - Millers Dairy Farm - Phil Black Photography
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography

I knew that if this short hour to myself would likely be my only alone time, and I savored those moments and gave my body some well deserved self care and relaxation. It really helped me get present for the rest of the day and to make sure I was focusing on what really mattered. This step is important throughout the wedding planning process also. It can be so challenging not to get wrapped up in the pinterest boards and the details and trying to make everyone else happy that you forget about yourself and to pay attention to what you need.  When you’re fighting against your body, you have to listen to what it says while it is whispering instead of waiting until it is screaming at you to stop and make a change. Make it a habit to make time for yourself.

 2. Surround yourself with people who lift you up. 

Eaton Rapids Wedding Photography - Millers Dairy Farm - Phil Black Photography
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography

Ain’t nobody got time for negativity. I’m so blessed to have the most amazing tribe of girlfriends who all bring their own unique character traits to the table. My girls balanced me, kept me grounded, supported me and kept me smiling. My husband’s guys kept me laughing and everyone was troupers as it started to rain moments before we were about to walk down the aisle.

My family that day was amazing. My dad particularly went above and beyond to make sure everything was as it should be and that everyone was having a great time. We were overwhelmed by the love and generosity by every guest and were surrounded by love all day.

Eaton Rapids Wedding Photography - Millers Dairy Farm - Phil Black Photography
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography

I know that not everyone has this type of environment or support systems. If this is the case, consider who you really want to be surrounded with when you make the biggest promise of your life. What kind of energy do you want to bring to your day? Physical energy is flaky with autoimmune disease, and I find that when I’m surrounded by people who are at a lower vibration (or who don’t enjoy life), I lose zest.

Eaton Rapids Wedding Photography - Millers Dairy Farm - Phil Black PhotographyInvite the people who bring light in your life. Make them a part of it. Don’t feel guilty if you don’t invite your coworkers dog-sitter or your mom’s cousin’s kids that you haven’t met, ever. This is about you and your husband and who you love, and who loves you best. You won’t regret surrounding yourself with awesome people, you might regret inviting Debbie Downer.

3. Put someone else in charge on the day of. 

Whether you hire someone, loop in a friend or family member, or get the DJ to take over, get someone to take the lead on the big day.

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My best friend from high school was my hostess with the mostess, and even while pregnant she took charge and smiled the whole time. My cousins were in charge of pouring champagne, and my stepsister served drinks with the help of her friend. My in-laws were in charge of clean up the next day. “People want to help you, and you should let them,” was the persistent advice of my future mother in law.

This was probably the hardest advice that I had to take. I’m big on “No thanks, I’m good,” and can handle everything on my own. I know I can handle it, but sometimes you just shouldn’t have to. Particularly on days like today where the celebration is about you. Pass the torch and let someone else take over making sure the centerpieces are all set and that the guys have their boutonnieres and to make the decision on whether to continue the ceremony in the rain or take an hour to move everyone inside. This is your time to enjoy all the things you created, not to think or stress.

4. Whoooosahhhhhh

Breathe. And be grateful.

Not everything is going to go exactly as you planned.

And those moments are the best ones. Let go of expectation, and just enjoy every moment for what it’s worth. We had the most relaxing morning at my home getting ready, and all of a sudden I was supposed to meet my future husband for our first look in 15 minutes and my makeup wasn’t done and I wasn’t dressed and we had taken zero bridal party pictures and everyone was asking if I was okay. I felt myself rushing and getting tied up in freaking out for a minute and then took a breath and remembered that the show can’t start without us. We’ll have plenty of opportunities for pictures, for everything little.  We’re getting married today. I’m alive. Nothing else really matters. So I took a deep breath, let it go, and went back to enjoying myself.

Eaton Rapids Wedding Photography - Millers Dairy Farm - Phil Black Photography
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography

Things are going to happen that you don’t expect or maybe didn’t want to happen. But in the end, these moments will be the best and you’ll look back on them again and again throughout the years.

You might cut your foot open 5 minutes after wearing your shoes and have to change into flip flops right before you walk down the aisle, but at least you’re comfortable.

It might be sunny until the moment you have to walk down the aisle and then it may decide to rain. But you’ll get the greatest picture with your dad in an umbrella.

Eaton Rapids Wedding Photography - Millers Dairy Farm - Phil Black Photography
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography

You might not get all of the pinterest-worthy golden hour photos you anticipated, but you’ll have some hilarious moments with the bridal party as you are stuck in an old ice cream parlor.

Eaton Rapids Wedding Photography - Millers Dairy Farm - Phil Black Photography
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography

The best man might swear in his speech and it may go on for a while, but you will laugh and it will be one of your favorite memories and something that will be talked about forever.

Eaton Rapids Wedding Photography - Millers Dairy Farm - Phil Black Photography
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography

The flower girl and ring bearer might not want to walk down the aisle. But they are absolutely adorable so it doesn’t matter.

Eaton Rapids Wedding Photography - Millers Dairy Farm - Phil Black Photography
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography

The dog might follow you everywhere all night and even interrupt the daddy-daughter dance, but you’d rather have him there with you than not at all.

Eaton Rapids Wedding Photography - Millers Dairy Farm - Phil Black Photography
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography

Those unplanned, unintentional moments are the best.

    5. Pay attention to your hands. 

 Weird advice, I know, but hear me out.

You will look at your hands every day of the rest of your life. Likely they’ll now have a ring on the left hand to help you remember this day, but if you focus on your hands, you’ll remember more of the moments.

With chronic illness, our hands often go through a lot. They are constantly being washed to prevent infection, sometimes they are being poked with an IV for medications, and sometimes they are squeezing or clenching in pain. Our hands hold a lot of memories. Having good ones when you have to go through something tough can make it a little easier. Here are some of my favorite memories:

I think about the mimosa I held and the piece of turkey my future cousin-in law handed me while my makeup was getting done.

Eaton Rapids Wedding Photography - Millers Dairy Farm - Phil Black Photography
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography

My hand tapped on my future husband’s shoulder when we met for our first look.

Eaton Rapids Wedding Photography - Millers Dairy Farm - Phil Black Photography
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography

My hand gripped by bouquet that was made by my cousin, wrapped with my great grandmothers brooch she wore to her wedding. My fingers touched my necklace that was made from diamonds from my other great grandmothers ring.

Eaton Rapids Wedding Photography - Millers Dairy Farm - Phil Black Photography
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography

My hand linked through my dad’s arm as he walked me down the aisle.

Eaton Rapids Wedding Photography - Millers Dairy Farm - Phil Black Photography
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography

My hands met my husbands as we stood in rain, looked into each others eyes and stated our vows.Eaton Rapids Wedding Photography - Millers Dairy Farm - Phil Black Photography

My hands were lifted as we were married and ran together down the aisle out of the rain.

Eaton Rapids Wedding Photography - Millers Dairy Farm - Phil Black Photography
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography

My hands wrapped around my friends and family as we laughed and took pictures.

Eaton Rapids Wedding Photography - Millers Dairy Farm - Phil Black Photography
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography

My hand was covered with my husbands as we cut our cake.

Eaton Rapids Wedding Photography - Millers Dairy Farm - Phil Black Photography
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography

My hand held a glass of champagne as we said cheers, and held the hands of others as we prayed.

Eaton Rapids Wedding Photography - Millers Dairy Farm - Phil Black Photography
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography

My hands wiped away tears as both sets of my grandparents danced as they shared the dance for the “longest married couple.”

Eaton Rapids Wedding Photography - Millers Dairy Farm - Phil Black Photography
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography

My hands held more hands as we all danced and laughed and danced.

Eaton Rapids Wedding Photography - Millers Dairy Farm - Phil Black Photography
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography

And most importantly, my hands were held, by my best friend, my forever partner in life

and were promised they’d always have another to hold.

Eaton Rapids Wedding Photography - Millers Dairy Farm - Phil Black Photography
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography
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Hope in Movies without Popcorn

Good morning friends. No smoothie to share today as my husband is still sleeping and I didn’t want to wake him with a roaring blender. I do have a cup of Tazo Earl Grey tea sitting here though. I love the smell of Earl Grey. That hint of lavender is delicisou Do you have a favorite kind of tea you’ve been drinking lately? I’m always looking for new ones to try.

I still don’t think I am recovered from daylight savings. Monday was great, and it all went downhill from there. I’ve missed my morning yoga practice every day. Just can’t quite wake up out of the fog. It could be this weather too. It’s been a winter advisory pretty much all week, grey sky, sleet, snow or ice. Shmarch. 2qqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqsw

That was a hello from Jojo the Cat. She’s also been a devil to deal with in the mornings and wakes up about an hour before dawn encouraging everyone else to get up and greet the day with her. Even with a full bowl of food, she is a morning person on steriods and just wants you to wake up, wake up, wake up! I should just start getting out of bed when the animal alarm clock wants me to instead of dozing in and out of dreams for another hour. I’m just so tired. The fatigue never goes away.

When I’m done here, I’ll be working on my grocery list and will try to head up to the market before everyone else and their brother get there. I love going to Horrocks, it’s a local farmers style market that we have here. They sell  delicious varieties of fresh produce and locally sourced meats as well as other items from area bakeries. And they have free coffee. Can’t beat that.

After groceries I’m going to see Beauty and the Beast with my Aunt and cousin. I’m not much of a movie goer these days, but I loved the cartoon and I’m really excited to see the live version. Going to a movie is one of those situations that revolve around food, and I just have a hard time getting excited about those anymore.  Movie theatre popcorn may be the one food item I miss the most post UC that I can’t find a replacement for. The smell, the mouthwatering buttery salty flavor..mmm. My college roommate and I used to go to the movie theatre just to get a bucket of popcorn and then go home to watch our own movies or shows. It was my favorite snack.

Digestive diseases aren’t usually a fan of the little kernels however, and my Ulcerative Colitis is completely against it. So, I’ll probably be smuggling in some coconut chips and maybe I’ll find some corn syrup free gummy bears I can slip into my purse. Living on the edge and smuggling snacks.

It is amazing how many situations in our culture revolve around particular meals or snacks. This has been a huge adjustment for me in coping with this disease, finding other foods or finding other ways to celebrate. I know it can be much harder for those with feeding tubes or other illnesses, and I’m lucky I have foods that I can eat. Change is difficult, and watching others not have to make those changes while you do can lead to a pit of self despair. I try not to go there and just make a decision to find a new way to enjoy it. Like today, for example. I could be jealous of the people with giant buckets of popcorn that surround me, but instead I’ll choose to be grateful for the time spent with my aunt and cousin, and to look at this opportunity as a blessing instead. It helps me to reverse the negative thought process towards gratitude. Do you come into these kinds of situations? Try it out and let me know what you find happens. Or if you have any other tips for those food centered holidays and gatherings.

 

Enjoy your Sunday. 🙂

 

 

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