Introduction and Background
00:10 — Introducing Herself
“Good morning, Manny. My name is Tracy Alexis. I hold a PhD in organizational and industrial psychology, and I’ve used that extensive background and research qualifications to write my book, Interstitial Cystitis: A Personal Journey of Complete Healing.”
Early Symptoms and the Impact of a Car Accident
00:42 — The First Symptoms
“Actually, about 10 years ago, I had a total bladder death [complete loss of bladder function], and the doctors were extremely perplexed about that.
“It was preceded with some symptoms like urinary frequency, retention [difficulty emptying the bladder], painful voiding [painful urination], things of that nature.
“But just the sudden stopping of a bodily organ was extremely devastating, and it was very challenging for the doctors to figure out what it was.
“As it ultimately was a result of a horrific motor vehicle accident that I had been involved in just prior, about 14 months.
“And while that doesn’t really seem like a cause and relationship from one to the other, science is just now learning about the adverse effects and prolonged effects of bodily trauma and how it manifests over time.
“So often it isn’t quick, as was the case with my situation.”
01:49 — Unexpected Vertigo
“No, I did not [notice symptoms immediately after the accident].
“But right about the same time the bladder completely shut down and stopped working, I ended up with a horrific vertigo [a sensation of spinning or dizziness].
“And I did have a head trauma, and what the neurologist and the vestibular rehabilitation clinic both suggested was that with the sudden trauma to the head, we have little hair follicles inside the ear canal.
“And the way they explained it to me, it’s analogous to a snow globe.
“So when you shake up a little snow globe, you see the snow swirling around, and that’s pretty much what happened with the head trauma.
“The calcifications on the inner ear hair and the cochlea [inner-ear structures, as described in the interview] had broken off and started floating around very violently in the inner ear.
“And it caused me to lose balance, have difficulty standing upright, made me nauseous.
“Again, just a very unanticipated onset of these things 14 months after the auto accident.”
02:59 — Connecting the Symptoms to the Accident
“I did not [connect the bladder problems and vertigo], but the vestibular rehabilitation clinic basically did.
“They said, ‘Look, anytime the body goes through such a horrific trauma as that, it cannot be expected that you’re going to manifest symptoms immediately.’
“And in fact, that is what happened. These symptoms basically were prolonged over a 14-month period of time before they manifested and showed themselves.”
Diagnosis and Early Treatment
03:29 — Difficulty Diagnosing Interstitial Cystitis
“With the interstitial cystitis, it was extremely difficult to get a diagnosis of that.
“And it is a chronic pain dysfunction with frequent urination, burning urination, sometimes difficulty initiating flow, sometimes just difficulty getting that urine that’s collected in the bladder to completely empty out, so on and so forth.”
03:52 — Treating the Vertigo
“With the vestibular, or the inner ear, it was a little bit more easily treated.
“They gave me basically a hands-on toolkit, not really any tools in it other than just some exercises I could do at home to help improve the auditory functioning in the inner ear.”
04:16 — Taking an Active Role in Recovery
“I am now okay.
“Of course, as with anything in life, you get out of it that which you’re willing to invest into it.
“So if we want to be lazy and complacent and just say, ‘I’ll deal with the physical therapy another day,’ we don’t tend to get better.
“But if we are very proactive in our own healing, which for me personally I have to be because I’m such a poor candidate for medication, I don’t tolerate chemicals very well.
“So pretty much my only option is hands-on.
“It’s physical therapy, it’s vitamin supplements, minerals, herbs, things of that nature.
“So I dove right into the vestibular rehab exercises, and I also dove into a lot of research on vitamins and supplements and herbs and how to heal my bladder with those.”
05:08 — Managing Two Different Conditions
“I’m sorry, but I know I’m toggling back and forth between the vestibular and the bladder.
“They’re really very disparate issues. The way I approach them is very comfortable.”
Living with Severe Chronic Pain
05:33 — When Life Became Unbearable
“Oh my gosh, life was basically unlivable, unbearable, as it is with any chronic disease or chronic pain onset.
“And there was one point in my life when I was getting up probably 20 to 25 times in an eight-hour time span at night just to go to the bathroom.
“So I wasn’t getting any restful sleep, any of the most restful sleep, which is what they call REM [rapid eye movement] cycle of the sleep pattern.
“And I genuinely thought about ending my life just to get away from the pain.
“Of course, I do have two children, and I told them, ‘I don’t care how horrible your life gets, ending your life is never an option.’
“So it was very confounding and confusing for me to experience that type of very low point in my life.”
06:27 — Sharing Her Experience with Medical Researchers
“Fortunately, I was asked to participate in a medical focus group on interstitial cystitis.
“And I did share that with the medical doctors who had invited me, as well as other interstitial cystitis sufferers, to participate in that focus group.
“And when they heard that, not just from me but also from other IC sufferers, they became very alarmed that this was a disease that patients and people who have an affliction of it would consider the alternative of not living versus living in that pain 24 hours a day, seven days a week, 365 days a year.”
07:06 — Five Years of Recovery
“It took me five years to turn that situation around.
“It was not quick or easy, but I was determined that I was going to heal myself from that situation.
“And in fact, today I am completely symptom-free.”
How Chronic Pain Affected Her Work
07:43 — Working While Experiencing Severe Symptoms
“Well, it’s interesting because at the time I was experiencing the worst of my IC symptoms was when I was engaged in my last employment for someone other than myself.
“So I worked for a national nonprofit, and no one really understood or could understand.
“My boss did have an acquaintance that he knew before he ever met me that had been an IC sufferer and apparently still had her IC.
“But he was a little bit aware of what the symptoms were and how it would impact my work and my daily functioning.
“But nobody really walks in those shoes but the individual who is going through it.”
08:24 — Setting Boundaries at Work
“I literally had an experience where one of my peer directors followed me into the restroom to have a conversation with me.
“And I basically just very candidly turned to her and said, ‘Unless the building is on fire, don’t follow me into the restroom. There’s no reason for us to conduct business in here. You can meet me in my office. I can meet you in your office. This is inappropriate.’
“And basically what I was doing was drawing a boundary around personal time that I needed to focus on emptying my bladder.
“And unless, again, Manny, someone else has experienced that, they can’t possibly fathom how challenging it might be for someone with these medical problems to just do a simple task like emptying their bladder.”
09:15 — Describing the Severity of Her Pain
“So the worst days were, the doctors give you a pain scale of zero to 10, with zero being, ‘Oh, I’m happy and pain-free today,’ and 10 being, ‘Oh my gosh, I want to kill myself.’
“My pain threshold was set at 12 or 13, so it was totally off the charts.”
How Chronic Illness Changed Everyday Life
10:07 — Living in Survival Mode
“Yes, basically none of those things [hobbies and other activities] are on the radar.
“The focus shifts from being an active and engaged participant in life to just survival mode.
“You only want to do the very bare minimum just to get the day over with so you can crawl back in bed, hopefully take some type of medication that’s going to help eliminate some of that pain, and just try to get rested so you can get up and do it again the next day.”
10:36 — Developing Empathy for Others with Chronic Pain
“It was very disruptive to a normal existence, and my heart goes out to anyone who has chronic pain, regardless of what the name of the disease is and is associated with that chronic pain.
“My heart goes out to them.
“It’s very humbling to walk in those shoes for four or five years because you begin to have a greater capacity for empathy in others.
“And I just want to take a moment to thank you for your empathy and understanding and compassion of what it is to go through this, and also your initiative with a nonprofit to help other individuals.
“I think ultimately that’s what we all want to do, to share our story so that someone else can get a golden nugget and apply it to their life and hopefully change their lives for the better.
“So thank you very much for what you’re doing as well.”
Treatments That Did Not Work for Her
11:58 — Trying Conventional Medical Treatments
“Yes, the things that I tried that really didn’t work so well came from the mainstream medical providers.
“One of the things that they offered me was Flomax [tamsulosin, a medication sometimes prescribed to help with urinary flow], which is not FDA-approved for women who have interstitial cystitis.
“But the most qualified urologist in our state prescribed that for me.
“And basically on the one hand he’s handing me the prescription note, and in the next breath he’s saying, ‘By the way, if this doesn’t work, I can’t offer you anything else to help your bladder work.’
“So that was very, very disturbing.”
12:35 — Recurrent Urinary Tract Infections
“After that, I did manage to find a wonderful clinic that knew all about my condition.
“And basically I went through 10 months of recurring urinary tract infections, and the doctor prescribed pharmaceutical-grade antibiotics for me to take.
“And basically antibiotics just destroy our gut and the biome in our gut. There’s no flora or fauna left.
“And a healthy gut is extremely important to fighting off any disease that nature throws in our path.
“So my main objective after I got off the 10 months of antibiotics was to begin rebuilding my body.”
13:14 — Changing Her Diet
“I did go through some dietary changes as well.
“Interstitial cystitis sufferers are extremely sensitive to any type of food that is high in an acid content or high in oxalic acid content.
“And oxalic acids are basically the way our bodies metabolize the foods that we ingest. They are an output of that metabolization.
“So just a horrible existence for five years. I wish I could paint a different picture.”
13:42 — Her Experience with Elmiron
“The next treatment, the next course of treatment, was a medication called Elmiron [pentosan polysulfate sodium, a medication prescribed for interstitial cystitis].
“I took exactly one pill.
“And we’re hearing all about the adverse side effects of Elmiron on television right now because there’s a class-action lawsuit against this product for blindness and macular degeneration.
“So I was taking a pill to help my bladder, but what we’re finding out now is that one of the adverse side effects is blindness.
“So the two seem very disparate and disjointed, as many medication side effects tend to be very outside of the box of the area they were intended to treat.
“I took exactly one of those pills, and I suffered every adverse side effect on the packaging label.
“And I just realized that that was not the right thing for me.
“So that’s when I began the research that resulted in documenting my journey and putting it in a book so that it can help other people who suffer with IC.”
14:44 — Living with Fibromyalgia as Well
“And I’ll just mention, Manny, I also had fibromyalgia [a chronic condition involving widespread pain and other symptoms] at the same time I was going through IC.
“As many interstitial cystitis sufferers tend to have, those two tend to show up together. Don’t know why.
“But I’m not suffering with either any longer, I’m thankful to say.”
Working with Her Doctor and Insurance Company
15:41 — A Longstanding Relationship with Her Physician
“Yes, so I will say that I’m one of the lucky people on the planet.
“I have a doctor who’s known me for 22 years.
“And the beauty of that is that he realizes I only show up when there’s a problem.
“I am not a malingerer [someone who exaggerates or pretends to have symptoms]. I’m not a pill shopper.
“I just want help when there’s a problem.
“And I would encourage your followers and the people who are listening to many of the videos that you’re posting, Manny, if you’ve got a serious problem, only go see your doctor when you cannot bear it anymore or you genuinely need intervention.
“Because they’re busy, and they are right now in America especially, with the government so closely scrutinizing everything that doctors do and in fact even dictating to them how much time they’re allowed to spend with a patient who has a certain or specific condition.
“They are jumping through as many hoops to live their lives as we’re jumping through to live ours.”
16:39 — Finding a Specialist Who Understood IC
“So with that said, my doctor’s been wonderful with me.
“He did give me a referral to a provider who knew absolutely nothing about interstitial cystitis.
“And that was very alarming because this was a board-certified urologist who had never done an instillation [a procedure in which medication is placed directly into the bladder] in his professional life.
“So that was not a confidence builder.
“But that was the only resource that my primary care physician knew to refer me to.”
17:09 — Appealing to Her Insurance Company
“From there, I basically appealed to my insurance company, my HMO/PPO [health insurance plan], and I said, ‘Look, the policies and the statutes in New Mexico are such that if you’re not able to provide me with the care, the specialty care that I need, in your network, you have an obligation to refer me outside the network.’
“So I made an appeal and a grievance, and I requested that the insurance company refer me back to where I had gotten such exemplary treatment.
“And they did. They realized they did not have the expertise in that area.
“So those are some of the hurdles that I’ve had to overcome.”
17:48 — Understanding Her Doctor’s Limitations
“My doctor was not personally very fluent around interstitial cystitis.
“All he really needed to do was to provide a referral to a urologist, which he did.
“And again, no disrespect to him for not having a larger network of professionals with whom he could have made a referral.
“It was just a limitation based on the geography of our state.
“So it wasn’t anything he could or really couldn’t do. He did the maximum that he was able.”
The Personal Toolkit She Developed
18:42 — Documenting Her Recovery Approach
“Well, that’s a really good question too, and that’s why I tried to document it and write a book about it.
“So I did develop what I called a basic toolkit, which was to start my morning with a very strong probiotic [a supplement containing microorganisms intended to support gut health] to rebuild that gut health that I mentioned earlier had been destroyed with the 10 months of antibiotics.
“That was first and foremost, was to rebuild my gut so that I would be in a position to fight off other illnesses should something else try to attack your body.”
19:11 — Vitamin C and Cranberry Extract
“Then my toolkit also included vitamin C coupled with a 4,200-milligram cranberry fruit extract.
“And it’s the combination of vitamin C with the cranberry fruit extract that creates a hostile environment in the bladder for bacterial growth.
“So what that did was fortify my body so that I would never have another urinary tract infection.
“And most men don’t really experience urinary tract infections. Very few do.
“But for women it tends to be just an incessant problem.
“It’s particularly aggravated by intercourse, and there are some other issues that, because of our physiology and how our bodies are built, there are some other contributing factors that make us a little bit more susceptible to a UTI than a man.
“But with that said, it’s such a miserable feeling. I couldn’t wish that on my worst enemy.
“So when the urinary clinic mentioned to me that this was a great combination to not ever have to suffer with another UTI, I was on that immediately.”
20:24 — A Caution About Vitamin C
“I will say, just as a caveat, some interstitial cystitis patients will not be able to take the vitamin C because it’s highly acidic.
“And that’s the one thing that creates the burning sensation when we go to empty our bladder.”
20:38 — Alkaline Tea and pH Drops
“Then the last thing that I added to that basic toolkit was, at the time, it was a tea that was made by Swanson Vitamins.
“It was called an alkaline tea, an apricot alkaline tea, but they’ve since discontinued that.
“So in my book, discovering that they discontinued the tea, I mentioned that they did replace it with pH Protector Drops, which are available at Swansons.com, and they’re very affordable.
“And it’s just a way to apply in the water that we drink so that it doesn’t burn when it comes out of our bladder.
“And that’s one of the biggest problems that most women have come into with burning urine.
“It’s highly acidic, and that’s one reason it burns, and it can also burn and traumatize the bladder wall just sitting in our bladder waiting for us to empty it out.
“So I found those drops to be very, very helpful.”
21:34 — Checking Urine pH
“And then one way we can check our bodies to see how acidic or alkaline our urine is, is just invest in over-the-counter test strips.
“Available at any pharmacy, CVS, Walgreens, Walmart, and any of those places would carry them. The herbal store would carry them.
“And you just basically pass it right in front of your urinary stream when you’re voiding.
“And it’s got a little color chart like a rainbow on the back, and you line it up to the rainbow, and that will tell you exactly how alkaline or acidic your urine is.
“Those were the basic tools in my toolkit that helped me progress very far, very fast.”
Recovering from Vertigo
22:24 — Different Treatments for Different Conditions
“This didn’t do so much with the vertigo, but it certainly could work with the interstitial cystitis.
“The toolkit that the vestibular rehab gave me for the dizziness I was experiencing, that’s what worked well.
“Some visual tricks to do while I was walking through the house or outside on a walk.
“Very easy little things to do.”
Advice for Others Living with Chronic Illness
23:09 — Celebrating Small Victories
“Take one day at a time. Celebrate your small miracles, whatever they may be.
“Sometimes it’s just getting up and getting out of bed.
“That’s worth celebrating if that’s an accomplishment that you didn’t have the day before.
“So do celebrate the small victories.”
23:25 — Being Kind to Yourself
“Be very kind to yourself.
“Don’t worry about what other people think because very few people are going to understand this disease or how limiting it will be for your life as you navigate through it.”
23:39 — Hope, Faith, and Perseverance
“And last but not least, stay hopeful.
“If you believe in anything bigger than yourself, get on your knees and pray because prayer is powerful and can help us overcome every obstacle in our life.
“And if it weren’t for my faith, I would not be healed right now.
“I’m absolutely convinced of that.”