Have you ever come across an Instagram post and just thought, “YES! This is my language! Finally someone is speaking it.” Well, Callie at @riverandquill is this person for me. I found myself nodding my head, smiling, laughing, tearing up and saying OH MY GOSH YES to so many of her interview responses. She has an amazing talent for writing, and I think many of you will find her journey with chronic illness, hope, and grief very relatable. Grab a cup of tea or coffee and settle in to read my interview with Callie to below. Make sure check out her social media and then blog here as she writes about her journey with health and healing. Thank you for sharing your story, and filling others with hope, Callie!
What chronic condition or illness are you currently battling?
I have Interstitial Cystitis. It is basically a chronic bladder infection, but it is not due to bacteria, just a neglectful bladder lining.
What do you remember most about the day you were diagnosed? Looking back, if you could tell yourself one thing about the diagnosis you were about to receive, what would it be?
The day of diagnosis is one of two of the most terrible days of my life. I walked into a room with what looked like torture device chairs, which in the end did live up to my predictions, and I sat through the most painful procedure of my life. I peed blood for days afterwards, but I had a diagnosis. I would take having another baby over that any day. The hardest part was that no-one could offer any encouragement. Immediately after the procedure, a nurse walked in with a death diet, and by that I mean, the most depressing diet I have ever encountered. The IC Diet is terrible, and depressing, and it was the cherry on top of a devastating day. Stretch someone’s bladder until it bleeds, then hand them a brochure with “no” signs through coffee, beer, and chocolate. Yeah, I was ready to die. I drove myself home, because I had no idea the procedure would be so painful, and collapsed in my husbands arms when I got home. I hesitated to walk through the door though. I wanted him and needed him, but admitting that I was forever different, forever the girl with the chronic disease; it just felt so foreign and I didn’t want to bring this alien back into my home. It’s hard to describe to anyone who hasn’t gone through it, but suddenly you are someone else, and it’s extremely hard to deal with.
If I could have a little conversation with former me, I would validate the fear and the sadness. Grief is most definitely something we need to go through when experiencing a chronic disease diagnosis, but I would also give loads and heaps and oodles of hope. I would tell myself that although I now have a chronic disease, it does not change the person underneath all the pain. She is still there. She will cower in a corner for a while, but she will emerge. I would tell her that she needed to take some time to grieve and some time to believe, some time to do things that brought joy, and time to just relax. I would tell her she is enough, that she is loved, and that this isn’t the end.
(Note from Jacklyn: OH MY GOSH YES. All of this. on repeat)
What medications/treatments/surgeries/lifestyle changes have you gone through to manage your disease symptoms?
I have been to more doctors in the past couple of years than I would like to admit to. I tried bladder installations at the very beginning. They work for some, but they didn’t work for me. I believe now that this is because my IC is hormonally driven. I was breastfeeding my daughter at the time and my estrogen and testosterone levels were both very low. No amount of medication was going to help me until my hormones balanced. I didn’t know any of this until I started seeing a functional doctor last fall. A functional doctor is an actual MD who not only looks at your symptoms, but looks into how your body is running in general in order to try to determine areas that it needs some help. For example, my CoQ10 levels were the lowest he has ever seen in a patient, so I take that as a supplement now. CoQ10 does a great many things, and is present in all of your cells. It gives you energy, and keeping it in check keeps your cardiovascular system in check as well, so yeah, glad I figured that one out. The most helpful supplement/therapy so far has been testosterone replacement. Who knew that girls needed this, right?! Apparently, many women’s natural testosterone levels drop after having babies, and mine was low and not coming up with regular exercise or a healthy diet, so we are supplementing and it is helping GREATLY! I stopped taking it for a week, just because I am a momma of three, and hey, life is busy, and I hadn’t picked up the new bottle. I flared for a week, messed up my period, it was crazy. Other therapies and meds that have helped me include Elmiron, but I order mine through a pharmacy in California that is hundreds of dollars cheaper (most people pay $800 a month for this medication – it’s insane and wrong and a whole other blog post). I also take Vitamin D, Desert Harvest Aloe Vera, Cystoprotek, Magnesium, and a very strong probiotic. If our gut micro biome is off it can throw our entire body, and in my case, my bladder. Physical therapy is another amazing treatment that I have used to help my symptoms. It’s pelvic floor physical therapy, which I write about in my manuscript, and is quite the experience. Who knew there were PT’s for vagina’s, right? Now that I have totally thrown you, I will just continue like I have said nothing about vaginas or vagina therapy. Relaxation and stress relief have been huge to my recovery, as well as believing in healing. I just flared for the first time in months and even after my months of feeling good it was hard to believe I would get back to where I was, but I am getting there. I know how hard this is to believe, but it is truly the first step to getting things under control. I use essential oils, CBD, and other natural products to manage stress, but I also allow myself time to do things that I love: read, write, play, walk, whatever!
I really love your writing on your blog and Instagram posts, you have great voice. What inspired you to start writing about your journey with chronic illness?
Thank-you!!! Chronic Illness isn’t like getting slapped with a strep throat diagnosis. It’s forever, or at least it feels like it is going to be. The medical community lacks in their social-emotional support for patients, and this is something I felt that I had a responsibility to fill in for. I’m not sure in what capacity, but I just knew I had to start talking. The suicide rate in those with IC is 11%, whereas the national average is 3%. Those mathematicians out there will note that this is triple, almost quadruple the national average. I had suicidal ideations repeatedly after my diagnosis and up to a year afterwards. I was a happy, well-adjusted person before. The pain brings you to this panic filled place and it threatens to keep you there forever. I knew how much it meant when people gave me encouragement that things would not always be so bleak and that’s what motivated me to start this blog. I wanted to be the words that maybe didn’t bring someone completely out of despair, because the grieving is legit and needed, but I wanted to shine a little light down to them and at least get them on the first step toward believing they could get their pain under control. Doctors don’t do this. I should say, most don’t. I have an amazing one now who absolutely does, but you can’t just tell someone they have a disease, give them a brochure and then walk away. They need more. That’s where I hope my blog can come in for some people. I want to lead them to a healthy place, through encouragement and through resources. No-one should ever feel as alone as many do with chronic disease. I guess, mostly I just want them to know that I’m there with them.
What are some of your other favorite things to do?
(favorite books, music, podcasts, hobbies, activities etc)
I have always loved to write. It is what helped me out of the depression brought on by IC. So, I suppose my blog is as much a help to others as it is to me. I also love to spend time with my family, going on adventures, which mainly involves walks, or playgrounds, but hey, you can find adventure anywhere, right?! I used to knit before I had tiny people climbing on me all the time, but maybe I’ll do that again some day. 🙂 I also love to read. If I could lose myself in a book every day and my kids would manage to stay alive, I would totally do it. I like to think that I hike. In reality I have gone on a trail once in the past few years, but, since this is my interview, I think I can just go ahead and say I hike. I’m a hiker.
What is something you have accomplished that you are most proud of?
I wrote a manuscript. It may be terrible, but I did it. I am actually in throws of trying to find an agent, and that is a rough business, but in the end, published or unpublished, I did something I have always wanted to do, so, yeah, I’m pretty proud of that.
(note from J: THAT IS AMAZING. Congratulations!)
Who inspires you?
Others with chronic disease. I see them going out and living their lives, despite their pain and their fear and I just admire them so much. As far as celebrity inspiration goes, I would have to say Anne Lamott. Her words always reach me. It’s like they were written specifically for whatever place I am in, when I’m in it. I’m also inspired by the beauty that surrounds me every day: my daughters giggle, flowers, the breeze. It’s just inspiring to be alive and to be able to experience any of it.
What are some of your coping mechanisms for dealing with stress?
Writing is huge! Also just going outside and getting away from my thoughts as much as I can. Calling someone and crying until the world feels less scary helps too. Also, lathering myself in essential oils is a new one. Plus I smell good, so there’s that.
What has been the best thing that has happened so far that would not have happened if you did not have your chronic illness?
This has been the easiest question to answer, by far, no question. Meeting my IC Sisters has been the best thing to happen to me. About six months into my disease, another nursing mom from the ICNetwork support forum emailed me. The support forum was terrible for me. Too many people complaining and just in it, and I was sure I would never get better based on the state of all of them. BUT, my friend Lucy made it worth being on there, as she and I connected and she then connected me to a group of 5/6 women who all have IC and all within 10 years of my own age. Some of them were in remission, some of them were as miserable as myself, but we all had been through it. They were such an encouragement to me, and continue to be, daily. We talk via Facebook messenger basically nonstop. The friendship we share is one that can only be experienced when you have a disease and they are the dearest of dear to me. I joke that if we ever met in person we will probably just cry for a solid hour, taking pee breaks every few minutes.
What keeps you hopeful?
I was in remission for three months, and I am pretty sure I know how to manage this devil of a bladder of mine now. I have hope because others have conquered, and I have too. Life is still in front of me, IC or not. It’s no longer my defining feature or lead role. It’s just a member of the chorus. Hardly even know it’s there most of the time.
Do you have a favorite saying, quote, mantra or song that you turn to when you need to flip your mood around?
Well, I suppose that would be smart, but not really. I need one. I usually just cry and loathe and then find a Bible verse, pray, and try to have a really successful internal pep talk. Sometimes it works. Sometimes it doesn’t. I’ll be working on this one.
Okay, time for rapid fire this or that:
Chocolate or Vanilla? Chocolate but damn you IC, now I have to do Vanilla
Coffee or tea? Always coffee, but again, IC insists it only be a cup or two. I used to drink pots
Hot or cold? Hot
Sweet or sour? Sweet
Dog or cat? Dog (but I love my cats!!!)
Running or walking? Walking. Duh. Walking.
Road trip vacation or resort vacation? road trip
Day at the beach or day hiking in the woods? Beach
Android or iPhone? iPhone
Sunshine or rainy day? Sunshine
Dinner out at a restaurant or a nice home cooked meal? Out
Doing the dishes or doing laundry? dishes
Comedy or horror? Comedy
Fiction or nonfiction? impossible – both
Cake or pie? pie
Sunrise or sunset? sunset
You’re in the waiting room about to leave after a follow up visit with your doctor. Someone else is in the waiting room and they were just diagnosed with a chronic disease. They catch your eye and then ask you “How do I get through this?”
What do you say?
Believe you can