What a visual, right? That is the pain my older daughter, Alli, describes is in her bladder each and every moment of the day and night, and then sometimes, it gets even worse! When she was in her early 20’s, Alli was diagnosed with Interstitial Cystitis (IC), and as one of the urologists we saw when she was a young graduate student at Columbia University told me, “You really don’t want her to have that!”

For these past two decades and a little more, Alli has done what any intelligent and determined, modern young woman with a chronic condition would do. She has done research, she has traveled from doctor to doctor, she has tried instillations of medication into her bladder (overnight in the hospital and in doctor’s offices, traveling home holding onto the liquid that was to treat the condition for as long as possible); taken oral medications that threaten other parts of her body; laid with heating pads and eschewed foods with acid; had major surgery; testified before Congress to advocate for research funding; attended seminars and webinars and, perhaps most frustrating of all, reached out to any doctor that may have helped someone with something like her situation, only to disappoint her once again. To say this has been heartbreaking to watch is an understatement that tears at the soul of her mama.

Blessed with Dave, an incredibly supportive and loving husband, and Jake and Jessie who want their mom to be free of pain, Alli lives a very full and satisfying life. She is a school social worker and many mornings, as we finish our conversation while she is heading to work, I bid her a good day, reminding her to “Go out and change a life today, Baby!” And she does. She changes many, many lives.

So why am I writing this now, when Alli has been coping with this pain all these years? Because this site is for being resourceful and not sitting back and taking what comes without fight and determination. Where there is a lead, a chance to find an answer, Alli has taken it; and that is what has happened, and my hopes are high, even if she is in a “wait and see” frame of mind. Through her research, she heard of and traveled to see a doctor in Louisiana earlier this week. He had a totally different perspective and attitude about her IC. He feels that for 24 years she has suffered with an untreated virulent E. coli infection that has nestled somewhere in her bladder tissue, gaining momentum and growing more powerful, sometimes kicking out bacteria which causes a serious and acute urinary tract infection, which is “treated” with short term antibiotics…and then the cycle continues. 

His different view on her situation is good news, but the kind of good news that makes you cringe at the same time you are wiping your brow with relief. She will need to be on a particular antibiotic to which E. coli is susceptible for two years…two years! But she has been suffering for over 20 so if in two years she has been treated, we will certainly celebrate!

I am in awe of her strength, her resilience, her ability to live her life helping and loving others. It is time for her to live her best life, to thrive, not simply survive, and I am praying this doctor deserves our confidence in him. My beautiful Alli deserves nothing less, and so much more!

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