To All Who Need to Apply for Disability
I’m writing on behalf of all the women and men battling interstitial cystitis (IC) every single day of our lives.
Let me take you through our (my) world. Let me advise you though that through my professionalism I tend to be extremely upfront, honest, and often times “bold” when I encounter people who have no clue, don’t listen, or don’t research IC to educate themselves regarding this dreadful, painful disease…especially those who think they have the power to decide the fate of your life.
IC plucked my life out from under me in 2007 and reduced my functional ability by about 80% and this includes others diagnosed with IC as well.
IC is NOT even close to just needing a bathroom nearby. That’s so far from the truth it’s laughable. We only wish that was it!
I’ll describe what I know others and myself go through daily. It’s about heaviness, swelling, and indescribable chronic pain in our abdomen, bladders, and pelvic area; spasms in our urethra and often times rectum that radiate pain to our bladders and pelvic area (hence the diagnosis of pelvic floor dysfunction, vulvodynia, etc. often applies); and our bottoms burn from constant wiping or patting dry 20-60 or more times per day and being up all night with urgency/frequency which literally knocks us off our feet onto the couch for days and sometimes weeks at a time.
Our coffee tables are not adorned with flowers, pictures, or pretty decor. Ours are full of ice packs, heat packs, heating pads, vaginal creams, Valium suppositories, different types of pain meds (for inflammation; low back burning that radiates through our bodies; spasms; vaginal, bladder, and abdominal pain), GERD medicines, tissues, Pyridium (a bladder anesthetic which turns every orifice of our bodies Orange), a plethora of medicines, and other “must haves” lying there 24/7 not only “just in case,” but because it is what it is and there’s no known cure and we suffer and need all of this all the time…daily and we need these items at our side because symptoms change that rapidly. Maybe there’s a magazine we can try to focus on through the misery to take our mind off of our pain for a bit but that’s a bit of a stretch. Usually there’s a TV on in the background.
Let’s talk more about the dysfunctional “social” aspect of IC using myself and countless others I’ve spoken to throughout the country via phone calls, texts, and in the IC Support Group I have run in Rhode Island since 2008. At times the group is switched to phone calls and emails because of constant flare ups by most of us.
I refer to my “other life” and my “now life”. Very different.
I used to be an extremely active young lady. Now I have 10 minute sitting/walking time. (2 block radius). My life has changed dramatically along with countless men and women with IC. First because I lost some friends due to my having to cancel constantly because flare ups and other symptoms can crop up in a minute or less completely taking your plans away. I like to call it “human contact”. That’s why we are usually diagnosed with depression and anxiety too. It’s a lonely disease. Speaking of “human contact,” your sex life suffers because it hurts for about 3 days after.
Usually at some point, fibromyalgia or chronic fatigue syndrome do rear their ugly heads. I was a hiker, rode my bike, (impossible with IC or pelvic floor dysfunction), was very social, outgoing, traveled a lot, drove a lot, (driving is a killer in your lower back and bladder…it’s ALL intertwined), went out a lot with my friends dancing or hanging out, shopping, walked the track daily, went to a gym, and that’s only the tip of the iceberg! I worked as a Mental Health Therapist all my life. I had to make the ugliest decision possible and that was that I had NO choice but to leave my job and apply for disability. I was out months or calling out sick all the time because I literally could not move off the couch because I was in pain and leaving a meeting more than once running to the bathroom sometimes not making it, because incontinence is one part of IC.
There are consistent, countless doctor appointments for instillations, physical therapy, and pain specialists. Feeling poked and prodded at constantly which hurts but is much needed to continue to find something that will kill off some pain for a small bit of time. Honestly, sometimes we don’t even want to be touched so we may cancel an appointment for a reprieve.
Most of us use “Squatty Potty’s” or other props to help us urinate. I and countless others have to use catheters because we go into retention. Some use diapers or, as I like to call them, “Ladies Wear” especially if I eat something IC disagrees with and literally raging diarrhea occurs. The most minute amount of urine in our bladders can set off a blazing fire. We have Lidocaine, Urelle, Pyridium, heat packs, cold packs, baking soda, etc. I could go on and on and these only quell the pain “just a bit,” we are not all of a sudden magically symptom free. I’d pay a lot of money to have that. However, IC has a mind of its own you see. We try to take control but it’s like putting out a house fire with one cup of water at a time. Some of us (as in myself too) have implanted devices called Interstim implants that have to be replaced every 7 years, because that’s how long they last.
We make huge attempts to be positive…take life one minute or one day at a time and learn to count our blessings. We are all blessed in our own ways. We try meditation, soft yoga, music and art therapy, affirmations, journaling, support groups, and anything our cohorts, doctors, nurses, therapists, physical therapists tell us to try to enhance the quality of our lives. We don’t want to live our lives like we do. We learn to be major advocates and we are fighters. We have more courage than you know.
We don’t enjoy applying and fighting for disability, but we have no alternative. Our bodies have no alternative.
I strongly encourage anyone who knows they have to apply for disability for IC to do so and fight until you win. Getting a lawyer and help from the ICA Disability Packet to assist you through the process is a must!
There’s support out there on the ICA website. Use that support. It’s there for a reason and it works and who better than the people who “get it?”
I’ll help anyone who seeks me out.
And to all who don’t “Get It,” never take peeing for granted… enjoy the flow because YOU never know.
My blessings and prayers to all my fellow IC Warriors.
“We Stand Together”
IC Patient and RI IC Support Group Leader