Today I’d like to share yet another success story in the form of an interview with blogger Callie Dixon of River&Quill.
I hope you will find reading her story as inspiring as I did and be sure to check out her tips for dealing with the challenge of chronic illness.
That’s it from me for now, enjoy the interview!
L: When did you first get IC and what triggered it? How did you get diagnosed?
C: I now believe I had IC in my early 20’s, but it hit and didn’t go away six months after I had my third baby. I woke up in the middle of the night and was certain I had a bladder infection. I remember making a mental note to call my doctor’s office in the morning so I could get in and get on medication before the weekend.
The doctor’s office called the following Monday to tell me I didn’t have an infection.
After about a month of trying to figure out why I was experiencing the pain and other symptoms, I went in for a cystoscopy at the urogynecologist’s office.
I’ve had three children.
None of their births compared with the pain I experienced that day. They stuck a camera up my urethra and into my bladder. I watched on the screen as the telltale red lines of IC obliterated the walls of my bladder.
It was official. I had IC. The doctor left and the nurse returned with a medication and an illustrated list of all the foods I should avoid.
I’m not sure what made me want to cry more: the pain, or the fact that I may never be able to have chocolate again.
L: How did your friends/family react to your illness and did you get much support by them?
C: I have always had serious health anxiety. There have been about 500 diseases and illnesses I was sure I had before. This is truly not an exaggeration.
My friends and family were used to me being convinced I had something I didn’t actually have, so I think it came as kind of a shock to them that this time I really was sick. I was like the girl who cried “disease”.
When I came home, my husband went out and bought food I could have that night for dinner and we watched videos on IC and how life can keep going etc. etc.
I was pretending to be brave, but I only kept it up for a couple days. Then I tailspinned into an abyss of anxiety and depression which I wish I could say improved quickly, but it didn’t.
I was devastated. I was angry. And I’m pretty embarrassed to admit, but I checked out for a long while.
So, naturally, my family was worried about me. They are all optimists, so they kept telling me to think positively and that everything would be ok, but it wasn’t ok, and I couldn’t pretend it would be anymore.
I was also incredibly selfish. I was so concerned with how I felt and how my life was forever impacted, that I forgot to be there for those around me who were also dealing with this.
I think it’s really important to remember that those who are walking alongside someone with chronic illness also need support, but the person with the illness is usually not able to be there for them as they are barely able to be there for themselves.
If you are a family member of someone with chronic illness, please advocate for your own mental health and seek out therapy or a support group. Your friend or family member needs you, but you also need to take care of yourself. This will only help you to be a better support to them.
L: Can you describe your journey getting better? What did you do and what prompted you to do it? How long did it take until you got better?
C: It’s been a long, turbulent journey, but, strangely, also a beautiful one. I tried many things which didn’t work, starting with bladder installations.
I was breastfeeding when I was first diagnosed, so when the installations didn’t work, and my doctor recommended Elmiron, I decided I wouldn’t take it, because I didn’t want to put my daughter at any risk.
I also didn’t want to stop breastfeeding so I could take the medication. I know this seems unnecessarily sacrificial, but it was more for me than anyone.
I had already been robbed of so much because of my bladder. I didn’t want it stealing the last few months of the intimacy which breastfeeding brings between mother and child too.
So, I turned to as many natural treatments as possible. I tried acupuncture, a million different supplements, marshmallow root tea, physical therapy, chiropractic care, yoga, you name it.
There was a solid year where it seemed I tried every possible treatment and nothing helped.
When I stopped breastfeeding, I decided to try Elmiron, although I buy mine as pentosan polysulfate sodium through a pharmacy in California.
I noticed a difference with it after about two weeks. However, it was gradual. VERY gradual. This was at about the one year mark from diagnosis.
Additionally, I started giving myself about an hour a day to spend on me. What I did varied, but I spent at least twenty minutes, as part of that hour, writing. I wrote about the grief, how I had lost my identity, how alone I felt, and everything else you feel when you experience the loss of your health.
I started researching the psychological process one goes through when chronic illness hits, and I found my own experience was fairly universal.
I also found a group of ladies, all within ten or so years of myself, who had IC. We have yet to meet in person, but these are some of the people who carried me through the worst of IC. I call them my IC sisters.
When I started talking to them, I realized I wasn’t the only person in my 30’s to get this disease, and other women, just like me were battling it. Some of them even had their lives back.
At about the second year, my non-stop flare succeeded into more occasional mild flares, and life was much more manageable.
L: How are you now?
C: I have my life back! I am doing really well. Most days I feel like myself pre IC.
I still have to take my medication, and I have mild flares from time to time. Having one as I type this, actually, but it’s not enough to keep my mind on it all the time.
I just have to remember to be kind to my body: get enough sleep, drink enough water, take my supplements, and eat healthy, anti-inflammatory foods, and I usually get back to feeling normal fairly quickly.
It took me a very long, gradual amount of time to heal after diagnosis. Eventually I noticed my good days were outnumbering the bad days and now the bad days are rare and quite surprising (albeit still rather annoying).
L: What are your tips for anyone suffering from IC?
C: I have an article I devoted to this question. I’ll hit a few of the points here, but be sure to check out this.
My first bit of advice is always to believe, and on the link above I call it Mental and Spiritual Health. I know this sounds like a weird piece of advice, but I think it’s paramount to the healing process. There is a substantial amount of research connecting the brain (our thoughts specifically) to our body.
People have healed spontaneously from things like cancer, just from believing they received a medicine which would cure it [1].
I used to think I couldn’t heal using this method, because it was “tricking” my brain. What I came to realize is that our brain can form pathways to healing in our body, but we have to tell it it can.
If we constantly doubt our ability to heal, and we listen to all the message boards with hundreds of people who also believe they cannot heal, I really think it’s going to be much more difficult to actually allow our bodies to heal.
We need to give them the proper environments and while believing alone may not end up being enough, if we give up, I don’t think we’re giving ourselves a fair shot.
And that comes from someone who did not handle this well and learned the hard way that I should have started believing from day one.
It took me A LONG time to heal, but it did happen, and although I still flare from time to time, I also know there is a part of me, underneath the skin and the muscle, the nerves, and the bones, which is incapable of being uprooted by disease.
When I harnessed this, believed in something greater, and my ability to heal, that was when I started to notice a difference in my bladder.
In addition to believing, I have a few other tips I generally tell people, all which I included in an eBook which I give away for free to anyone who subscribes to my blog. Just click here to read the other 5 “First Aid” points which include: Kill the Extras, Kill the Main Characters, Grieve, Find a Friend, and Reinvest.*
And as a final word of advice, don’t drive yourself crazy trying to get better. I give these tips because I know people are desperate to start healing, but I want to be clear that it isn’t an exact science for most people and what works for some doesn’t work for others, and you will absolutely lose your mind if you question every bite of food you take (I remember keeping a journal and freaking out if I couldn’t figure out which food bothered me).
At some point I think just letting it all be, in the timeless words of Paul McCartney, is the best bit of advice I can give to bringing yourself to a place where healing is most easily achieved.
Just don’t give up. This is not the end. You have a story which may be used to help others in your exact situation one day, and there is so much beauty and joy ahead of you.
*An aside – I do this just to help – I’m not making any money off of my blog at this point. It is simply a place where I have been working hard to build a community where those with chronic illness or anxiety can go and feel supported. Once you’re subscribed, you will receive all my latest posts and a few other updates welcoming you to the community.
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Can you relate to Callie’s Story? Or have you got any questions for her? Just comment below!
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References
- Rankin, L. (2013). Mind over medicine. Hay House, Inc.
