Here’s the thing no one tells you about living with a chronic illness. It’s lonely. You can be in a room with a ton of people and they can be offering all the support in the world but that doesn’t mean they understand. Especially when you are young. People can’t comprehend that I’m going to live with these diseases for the rest of my life. Everyone around me is always talking about when I get better. When I’m well again. “Oh well you’re only in your 20s, there’s no way you can live with this for the rest of your life.” But I am going to. I will be chronically ill until I’m dead. At this point, the only thing that can cure my diseases is no longer being alive (unless medical research is able to come up with a cure) Now I’m not saying that to make people feel bad or because I’m depressed or anything of the sort. I genuinely love my life.
I’m married to the most amazing supportive man and even though he doesn’t physically have my diseases, he lives with them as well. My diseases have changed everything about his life. People are always saying I’m so inspiring and brave but really it’s him that is. He’s the one who knew I had these diseases and knew the impact they would have on the rest of our lives but he married me anyways. In sickness and health was real to us even before our vows. Kyle is the one who goes to all my appointments and fights my battles for me when I’m just too weak. He’s stepped up and become my nurse and advocate. He’s spent many hours on the phone yelling at doctors’ offices and insurance when someone messes something up and to be honest he’s become very good at making them do what he wants. He’s the reason I’ll never give up these battles because he makes me stronger. I’m sure if he could physically take away the pain, he would. I see how much it hurts him to see me in pain daily and I wish I could take that away from him.
Sometimes I feel guilty because I know how much my diseases cause him to also miss out on the normal life of a young married couple. Instead of traveling the world and visiting all the places we’ve dreamed about, in our two years of marriage we’ve only taken trips for medical purposes. Instead of going out on fancy dates nights, we spend our days together in infusion clinics while I receive IVIG. Instead of going out to meet friends for drinks, we’re sitting at home on our couch watching Netflix while he hooks me up my IV saline drip. Instead of taking care of babies and teaching them how to crawl or walk, we are taking care of my service dog and teaching her how to take care of me.
But there are so many things we do have because of my diseases, we get to spend hours talking and laughing together. We probably know each other better than most couples who have been married for many years. We spend hours in the kitchen together coming up with new recipes I can actually eat. We spend our weekend snuggled on the couch just enjoying each other’s company. We’ve added to our little family by rescuing two dumbo rats who Addie loves & who are always doing silly things just like her. We have a ridiculous love for our pets because they are our babies & we enjoy spoiling them together & most of our texts are only photos or videos of them doing silly things. We’ve been able to binge many tv shows & also managed to almost beat Super Mario Bros in only a few weeks haha
Best of all we have appreciation for the simple things.. And because of that appreciation we now have a marriage. We spent so long putting off getting married “until I was better” but then suddenly realized how silly that was. One of my favorite days of the last two years was definitely January 23, 2015, the day I FINALLY became Kyle’s wife. That day was not anything we ever expected it to be. It was barely planned. We decided only a week before and barely told anyone. It was a cold, rainy day. I rented my dress and Kyle wore a suit he already owned. We said our vows in a random “celebrators” living room with only our best friend, my in laws and some of my family via facetime. Most people probably would have stressed but the blessing in the unpredictability of my illnesses is that made us just focus on the day & simply enjoy it. The day was full of so much laughter (some even during the vows haha) The rain somehow made it better and led to the most beautiful photos. My rented dress was blue and lace and everything I could have wanted. Kyle’s suit & hat worked perfectly to get the 1950’s style photos I’ve always wanted. Our friends took care of any of the things that could possibly stress us out (like a last minute “reception” to celebrate afterwards) so we got to just enjoy the fact that after so many years we were finally husband and wife. It was the perfect, simple day & it was all about the only things that mattered- our love, our marriage & our want to spend the rest of our lives together. The good & the bad days.
Our wedding day & finally being married was the perfect example for us of how beautiful things can come out of the most difficult situations. It wasn’t everything we thought we wanted but it was perfect & just what we needed. We now appreciate the good days so much more. The days when I’m well enough to leave the house and walk hand in hand down the street. The days we get to go just sit by the water and enjoy each other’s company. The days we get to go watch our favorite sports teams even if it means he has to push me in a wheelchair. The littlest things are so special to us. Who wants to eat inside when you can have a picnic and enjoy the views? Who wants to take the short way when there are so many more pretty trees if you drive the long way. Every day I fall in love with my husband even more and I used to think that was just some cliche thing people say but it’s completely true. For a decade he’s been making me laugh even on the days I really didn’t think I could. He reminds me how strong I am and holds me up on the days I simply can’t be. He’s the reason for the constant smile on my face.
The last two years have been the hardest years of my life but yet the greatest at the same time. I’ve had tubes in my nose, needles in my spine, arm, hand, neck & chest. I’ve received immunoglobulin from thousands of blood donors. I’ve had some scary allergic reactions. I’ve taken some scary medications. I’ve had too many ER visits to count, I’ve had to have a permanent IV line placed in my arm that goes straight to my heart not twice but three times. And for the last year a tunneled Hickman catheter in my chest instead. I’ve adapted to a life of being dependent on my central line, IV medications, ambulatory IV pump & liters of IV saline daily just to make it through. I’ve traveled to so many doctors. I’ve gotten a lot of very scary diagnoses. I’ve had to start using a wheelchair sometimes just to leave the house. I’ve fallen more times than I can remember and probably managed to hurt myself every time. There are periods of time I barely remember because I was so weak and exhausted and slept weeks away. There’s important things I’ve missed that I wanted so badly to attend. I’ve had to give up painting because it causes too much pain in my hands & search for new ways to be creative instead. I’ve answered so many questions about my body, a lot which were embarrassing.
But I’ve never done any of it alone. We’ve done it together. He’s been there through it all even through the embarrassing super yucky parts. And you know what somehow even the awful, painful, embarrassing parts still have good memories attached. Like how he literally put me and my wheelchair on the escalator and held us up when the elevator was broken at the metro station. We might never get to have that grand backpacking adventure but heck that’s why we got a jeep. My illnesses may have prevented us from being able to take a honeymoon but in less than two weeks we’re going to be driving our jeep to the Great Smoky Mountains for our second wedding anniversary. After everything we’ve gone through the last two years taking a trip to celebrate us feels so much bigger than just celebrating our marriage. We get to celebrate all we’ve made it through and the fact that we’ve still come out the other side laughing daily. IVIG may suck and have horrible side effects but he makes sure I’m spoiled with my favorite foods all day & I always get ice cream when it’s over. I might be stuck at the house a lot but that’s why we bought a comfy couch big enough for us to snuggle on together with Addie. Our little apartment has become my safe haven. It’s full of all the things I need and want.
God has blessed me with this incredible little family that makes sure every day is full of laughter and silliness. My favorite bible verse has always been Romans 8:28 “And we know that in all things God works for the good of those who love him, who have been called according to his purpose” & although it may seem odd to some, I truly believe in this verse. God didn’t give me these diseases but he has given me everything I need to battle them with a smile on my face. My life may not seem like a fairy tale to some but there’s no doubt Kyle is my knight in shining armor and God created us both perfectly to help each other get through the trials of life together. So I might be young & chronically ill but thanks to my husband, I’m rarely lonely. ♥
Simply Macy 
You are an amazing young couple. I do not know how you can stay so positive with all you go through. I do believe this young man is truly an inspiration to you and your family. You are a remarkable couple. God bless you both and keep writing your blog and maybe a book! Well writen, full of inspiration, love and sadness. Straight from the heart.
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