Tough Topics 1- Interstitial Cystitis

Today this topic is closer then any other topic as this lady and I became friends because we both have the same chronic bladder disease.

What is that you ask? Well here is an interview I did with her.

1. What is your name and where are you from?
My name is Julianne Smith and I’m from Winston-Salem, NC

2. What is the name of . your chronic illness?
I have Interstitial Cystitis

3.How has pain impacted your life? The pain has impacted every aspect of my life. It impacts my employment, ability to perform daily tasks, my ability to eat and drink what I want, my ability to exercise, my social life, and my intimate relationships.

4.Can you describe what your body feels like?
My body constantly feels exhausted, and my primary pain is in my bladder. It feels like someone took my bladder, put it in a shredder, poured lemon juice on it, and then set it on fire. It constantly feels that way, sometimes it’s worse than others when I go into what we call a “flare”

5. Do you feel like this interupts your life?
it interrupts my life every single day as I’m constantly planning my schedule around bathroom trips, taking medications, and taking supplements.

6.  Do you have a good support?
I have found wonderful support in the online chronic pain communities, and my family has always tried to be as helpful as possible but as many people suffering with chronic illness find it just isn’t enough to be supported when no one can truly understand. My sister got diagnosed with interstitial cystitis several years after I did which has given me a great support system because she understands everything I go through

7. What treatment is most effective?
There is no treatment that can cure interstitial cystitis, simply things that can only make you more comfortable and functional. For me it is essential that I drink alkaline water, take uribel, take Myrbetriq, use a heating pad regularly and take Epsom  salt baths every night

8. Can you run down a typical day for me?
A typical day for me as far as caring for my pain involves me waking up using the restroom and immediately taking a uribel with alkaline water to try and get a hold of my burning and spasms from the moment I start my day. I then will usually lay in bed for a little bit and stretch my pelvic floor while also using my heating pad. Throughout the day I’m constantly drinking alkaline water while taking uribel every 4 to 6 hours to help with my burning and I also use the bathroom at least once an hour due to urgency and frequency as well as the fact that my symptoms become  aggravated if I leave acidic urine in my bladder for too long. By the time I make it to the end of the day a warm bath as necessary to relax my pelvic floor that has been tense all day from me trying to control my bladder to only go when I want it to

9. How much of your day is impacted by pain?
There is no treatment that can cure interstitial cystitis, simply things that can only make you more comfortable and functional. For me it is essential that I drink alkaline water, take uribel, take Myrbetriq, use a heating pad regularly and take Epsom  salt baths every night

10. What is a common misconception about chronic pain sufferers?
I think a common misconception about chronic pain sufferers, ironically, is that there are times that we are symptom-free. This is not true, just because people see us acting a little bit more active than usual doesn’t mean we aren’t in pain it simply means that we are at the lowest level of pain we can possibly be and push ourselves to do things during that time frame

11. Do you feel isolated as a chronic pain sufferer?
Since my sister was diagnosed and since I found online chronic pain communities I have not felt as isolated, although when I do go into a horrible flare and I’m stuck inside I definitely can go back to some dark places in my mind. When I was first diagnosed though I didn’t know anyone in my personal life that had any form of chronic pain and I was not connected to anyone online and it was the darkest and most lonely time of my life. No one could relate to me and the ways I had felt robbed of my once  normal life.

12.How do you find distractions while coping with chronic pain? I don’t think I’ve ever found any true distractions, seven years into this I’ve kind of just gotten used to the pain always being there I’m not even sure I know how to feel without having pain. So I just go through life the way anyone else would without any specific distractions

13. How has chronic pain impacted your psychological health?
Chronic pain intensified my once mild anxiety and turned it into a monster. I’ve had to go on anti-anxiety medications and stay in therapy to help me remember how to keep a sense of normalcy in my life. It’s easy to become anxious and obsessed with your illness when it’s impacting every aspect of your being and from there it’s hard to not become depressed

14.How has pain impacted your social circle?
Before I was diagnosed I was constantly being social, I never missed an event and I never wanted to miss a single opportunity. When I got diagnosed I realized I could no longer live that way and it caused me to cut back in the amount of friendships that I have. In a way of course that’s a good thing because it means I’m surrounded by true friends, but I definitely miss being able to go be social whenever I want and not have to be thinking about resting my body

15.What do you think needs to be done in order for there to be a better understanding of chronic pain patients?
I think we will always have to continue to advocate for ourselves and other patients, and find ways to get our stories out there and into the main stream media because our stories are powerful and can inspire people to start looking for treatment for everyone. We all need better treatment options, and better research to be done to fully understand what’s going on with our bodies and how to help them.

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