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Chronic Pain – Suffering in (Quasi-) Silence

By: Katherine Itacy, Esq.

Dated: November 13, 2017

Living with Type-I (juvenile) diabetes can be really frustrating and painful, but until I started experiencing symptoms of arachnoiditis in December of 2015, I didn’t quite know just how frustrating and painful it could be to live in my body.

Arachnoiditis, as I would come to quickly learn, is an incurable spinal nerve pain disorder that is referred to by some as “humanity’s worst pain.” While I haven’t experienced a wide assortment of pain in my life, I have endured well over forty surgeries and procedures, so I can objectively state that it is, indeed, the worst pain that I have ever experienced. It has included: the sensation of electric shocks to the base of my spine; a seizing pain up my entire back; a stabbing pain in my lower back that (no pun intended) feels as if someone has plunged a knife into the body part and left it there; throbbing, pulsating pain to the lower back, buttocks, legs and feet; and severe, persistent episodes of muscle spasms, including one episode that made my entire body violently convulse for over three and one-half hours straight. I have also become unable to sit, stand or walk for more than a few minutes at a time. The pain has made me double over; other times, it has made my knees buckle beneath me as I stood.

Besides the obvious frustration of a former elite athlete now being unable to do any aerobic exercise at all, the more frustrating part for me has been the fact that the pain is so bad, I have been unable to maintain my focus or attention on pretty much any mental task for more than a few minutes at a time. I began to notice that whenever I would be doing my work, my brain would get distracted and redirected to the pain. And since my job as a legal research and writing specialist required me to constantly conduct legal research and draft legal court filings (both of which requires an extreme amount of mental focus), that meant I could no longer do my job. Leaving my job nine months ago crushed me, because it symbolized so much more than merely leaving a job – it symbolized the end to what I truly believed was my calling in life – criminal defense of the indigent. My days now usually consist of laying in bed for around 22 hours each day, and taking approximately 34 different prescriptions and supplements in varying quantity before and after each meal. If the combination of medical conditions and pills aren’t causing me to fall asleep for 4-5 hours in the afternoon, the pain is usually waking me up or keeping me from sleeping.

Following my diagnosis, I have had a number of MRIs and CT scans and EMGs done on my body. I have had nerves burned, facet joints injected with steroids and a spinal cord stimulator temporarily implanted – all to no avail. And by the way, if you’ve ever wanted wanted to know what it feels like to have your spinal cord plucked like the strings on a heavy metal guitarist’s instrument every time you sneeze, cough, clear your throat or laugh, give the spinal cord stimulator a whirl! To help you understand my current level of pain, I have asked my new pain specialist to try implanting the trial version of the stimulator in my back yet again, despite the fact that just nine months ago, I fiercely vowed never to give it another try.

Another thing I have discovered over the last two years is that there are very few doctors who understand the disorder well enough and are motivated enough to try and find alternate treatment methods beyond the typical prescription of Lyrica, Cymbalta and opioids. I have met with numerous neurosurgeons, neurologists and pain specialists; the majority of whom left me with little more than a shrug of the shoulders and the reassuring opinion that there is nothing more they can do to help me.

It wasn’t until I found, consulted and met with Dr. Forest Tennant in West Covina, California, that I felt there was a doctor out there who cared to do more than just send patients home to suffer from “humanity’s worst pain.” When we met in person this May, Dr. Tennant explained that he was supposed to retire almost twenty years ago, but decided to stay on as a pain specialist in order to focus on finding a new treatment protocol for arachnoiditis patients. He did so after treating cancer patients in Los Angeles for many years. Sadly, it was his arachnoiditis patients who were killing themselves in order to stop the pain. Others were left partially or completely paralyzed, in need of catheters in order to void their bladders, and/or suffering from dementia.

Since 1998, Dr. Tennant has reviewed hundreds of MRIs of arachnoiditis patients, and has come up with alternate treatments to the typical pain treatment protocol that most other doctors use. He has refused to believe that there was little to be done to help patients with this horrendous disorder. Excitingly, his new treatment regimen has afforded his patients significant reductions in their daily pain levels.

Unfortunately for me, with my almost lifelong diabetes in play, the treatment protocol has not given me much relief. The hormones that have helped almost all of the rest of his patients are affecting my blood sugar levels too much to be continued. I also have significant diabetic neuropathy in my arms and legs in addition to the arachnoiditis, which means that most days, my legs already feel like they’re on fire.

Thankfully, just knowing that there is a doctor like Forest Tennant out there, giving his all in order to find more relief for his patients, gives me so much hope. But for now, I remain in so much daily pain. I try not to complain too much about it, especially since complaining does little to change the situation for the better (other than let me vent my frustrations). Unfortunately, trying to get people to understand exactly how much pain you’re in is difficult when they can barely see any physical manifestations of it. To that point, I’ve become pretty good at masking my pain in front of others. Since I’ve been masking the sensation of feeling drunk every time my blood sugar has gone low for the last 29+ years, I’ve certainly had some practice in this department. But just because I am able to mask some of the pain does not mean that it isn’t there (in full force).

It wasn’t until I began masking my own pain that I started to wonder how others with chronic pain managed to get through their days. How do they function through the pain? Do others in their lives fully understand and appreciate their daily struggles? How many people with chronic pain disorders are out there, unknown to the rest of us (like Lady Gaga, who recently revealed her struggles with chronic pain in her new documentary)? Just because some of them are able to function and complete some daily tasks does not minimize the amount of pain they could be feeling. In fact, sometimes it’s those who are suffering silently who have, perhaps, more inner strength than the average person.

If you or a loved one has been living with a chronic pain disorder, I’d love to hear about your coping mechanisms and support systems. Even if you just want to vent, please feel free to either email me or leave a comment below.

Wishing you and yours health and happiness!

– Kate

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National Diabetes Month Starts Today – Be Aware and Spread the Knowledge!

By: Katherine Itacy, Esq.

Dated: November 1, 2017   

November is National Diabetes Month in America. According to the CDC, “More than 30 million people in the United States have diabetes, but 1 out of 4 of them don’t know they have it.”

Thankfully, my mom was (and continues to be) a registered nurse, so she noticed several things in my behavior and health when I was four years old that indicated diabetes (i.e., excessive thirst and frequent urination). She caught it quickly and brought me up to Boston to the Joslin Diabetes Center, where they took excellent care of me.

While my mother and my doctors provided me with excellent care and diabetes-related education, I spent most of my youth thinking that diabetes was not going to slow me down. I kept telling myself: “I have diabetes, but I am not a diabetic!” But the truth is, diabetes has ended up having me. It has taken over my body. It has attacked my sensory nerves in my arms and legs; it has worsened my circulation; it weakens my immune system and makes me more susceptible to illnesses; because of it, I heal very slowly from cuts and scrapes and am prone to infection; it has deadened nerves in my wrists and elbows; it has caused the blood vessels in my eyes to leak, my eyes to hemorrhage and cataracts to form; it has caused benign tumors to form in my breasts, and has caused such inflammation in my fingers that the tendons get stuck as I try to bend and straighten each digit.

As a Type I Diabetic, I am at risk of going blind, going into kidney failure and having my toes or limbs amputated. I am even at greater risk of heart disease and strokes.

Now, I am at least partially to blame for the speed in which my diabetes has worsened. There were a number of years during which time I ignored my blood sugars and intentionally failed to cover all of what I was eating with the appropriate amount of insulin. I have been through a lot in my life; most of which, good or bad, I do not regret. But I do regret not taking better care of my diabetes.

A medical professional said to me earlier this year that he wished diabetes was called “diabetic cancer,” so that his patients (and the general public) would take it more seriously and understand the severity of the disease. Now, I have never had cancer, so I cannot say whether that is a fair comparison. What I will say is that even after receiving the best medical care out there, and the best diabetes-related education from both my mother and from Joslin, I unequivocally failed to take my diabetes as seriously as I should have. Because of that, I will have to accept the fact that I may have lived longer, and suffered from less diabetes-related health complications, had I taken better care of myself.

Now thankfully, medical treatment for diabetics and diabetes prevention has come a long way since I was diagnosed in April of 1988. I am now using an insulin pump that works pretty similar to what one would expect from an artificial pancreas. Had I been born recently, things like the Medtronic 670G insulin pump could have helped keep my diabetes under much better control. Like I said, I will have to live with the bad decisions I have made over my healthcare. But hopefully, future generations will not have to suffer as I have.

Hopefully, if I do not see a complete cure for diabetes in my lifetime, I will at least be alive to see when diabetes is no more of a burden to the newly-diagnosed than having high blood pressure or cholesterol. Until that day, it is essential for the general public to keep themselves educated and informed about diabetes and its warning signs, treatments and potential complications.

Please, use me as a cautionary tale – no one wants to go through the amount of pain and discomfort that I have endured if they can help it. And you can help it. I have a very uncertain future ahead of me, health-wise. Yours doesn’t have to be. Stay informed, my friends!

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To learn more about my life journey with diabetes and other health struggles, keep an eye out for my book, From National Champion to Physically Disabled Activist: My Lifelong Struggle with a Diseased Body, and the Lessons it has Taught Me Along the Way, which will be submitted for publication soon!

To follow the CDC regarding all things diabetes, check out their twitter page at @CDCDiabetes. To follow the Joslin Diabetes Center, their Twitter handle is @JoslinDiabetes.

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A Sincere “Thank You!” to the Rhode Island Interscholastic League, and to My Dad

By: Katherine Itacy, Esq.

Dated: October 22, 2017      

As it gets closer to Wednesday’s Hall of Fame induction ceremony, I have been reflecting more and more upon what the Rhode Island Interscholastic League (“RIIL”) has meant to me. The simple fact is, RIIL changed my life, and has afforded me more opportunities and experiences than I could have ever hoped to have experienced in my lifetime.

You know, even though my family (the Johnstons) have been successful in the hammer and weight throws long before I picked either one up, I actually stumbled upon the events by pure happenstance. When I started high school, the hammer and weight throws were relatively new events for females. In fact, it wasn’t until the summer before my senior year that the women’s hammer throw became an Olympic event. So when my high school track coach told us in 1998 that the events had recently been added to RIIL-sponsored track meets, he asked for some volunteers, and I was one of the girls who signed up.

By the end of my four years competing as a Rhode Island student-athlete in high school track and field, I had accomplished the following:

  • Gatorade Rhode Island Girls Track and Field Athlete of the Year – in 1999, 2000 and 2001
  • Rhode Island high school girls indoor track and field state champion – weight throw – in 1999 and 2000
  • Rhode Island high school girls outdoor track and field state champion – hammer throw – in 1999, 2000 and 2001
  • Former Rhode Island high school girls indoor track and field state record holder in the weight throw (set in 1999 and again in 2000)
  • Rhode Island high school girls outdoor track and field state record holder in the hammer – tied with existing record in 1999; set a new record in 2000, and again in 2001 (which remains the state record to this day)
  • National high school girls indoor track and field champion – National Scholastic Indoor Championships – weight throw – in 1999, 2000 and 2001
  • National high school girls indoor track and field champion – Nike Indoor Classic – weight throw – in 2000 and 2001
  • Former sophomore-class national record holder in the girls’ weight throw (set in 1999)
  • National high school girls outdoor track and field champion – hammer throw – in 1999, 2000 and 2001
  • Only three-time national champion in the girls’ hammer throw in National Scholastic Outdoor High School Track and Field Championship history
  • Former freshman-class and sophomore-class national record holder in the girls’ hammer throw (set in 1998 and 1999, respectively)
  • Trained at the Olympic Training Center in Chula Vista, California in 2000
  • Filmed a training video for the hammer throw for United States of America Track and Field in 2000
  • Member of the 2000 United States Track and Field Junior National Team, competing in the 2000 World Junior Track and Field Championships in Santiago, Chile
  • Received almost 70 formal recruitment letters/packets from NCAA Division I schools, and ultimately accepted a full athletic scholarship to attend The Pennsylvania State University

Funny thing is, I honestly don’t remember doing half of these things; it was my father who had to remind me. See, more importantly than any award or record, the bond I shared with my father during my eight years of track and field was (and still is) one of the most important and best things that could have ever happened to me. He was (and remains) my biggest supporter (along with my mom); he was my coach (along with my uncle), my talent agent (moderating and keeping account of all the college recruitment letters and phone calls), my strength trainer and my best friend. Over eight years of competitions, spanning from New Hampshire to Florida, North Carolina to California, Canada to Chile, and including each and every RIIL-sponsored local meet, my father only missed two of my performances! That was while commuting every work day from Warwick, Rhode Island to Boston, Massachusetts for work.

The discipline, the sense of sportsmanship, teamwork and sacrifice, the collegiality with my fellow competitors and the sense of self-worth as a young female and as a student-athlete – they can all be attributed as much to RIIL as they can to my dad, Keith Johnston. That is why I feel so indebted to both.

Indeed, I am absolutely certain that any success or accomplishments I have achieved following my 2001 graduation from Warwick Veterans Memorial High School can be directly traced back to my time participating in high school sports, as well as to the time spent and sacrifices made by my father to help me achieve my best.

So on Wednesday night, as I am inducted into the RIIL Hall of Fame, I will be accepting this great honor on behalf of myself and my dad, and in great reverence to RIIL. You have changed my life infinitely for the better, and I am so grateful to be a part of RIIL history. Thank you.

You can follow RIIL on Twitter at https://twitter.com/riil_sports or on Facebook at https://www.facebook.com/RIILSports 

For last-minute tickets to the event, which must be purchased prior to Wednesday’s event, visit: http://www.riil.org/page/hot_news/view/11 

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Where, Oh Where, Has Patient-Focused Healthcare Gone?

By: Katherine Itacy, Esq.

Dated: October 14, 2017

Okay, so I have been a frequent flyer of the healthcare system for pretty much my entire life. Besides having met with my diabetic specialist every 3-6 months for the last 29 years, I have had at least 45 different surgeries/procedures during that same time frame (the majority of which having occurred between 2010 and 2014), have undergone countless MRIs, CT scans, X-rays and/or mammograms, and have visited most specialists more times than I care to admit.

My diabetes has led to my body attacking several of my body parts, including my eyes, my hands, my wrists and elbows, my breasts, and the nerves in all four limbs. My eyes suffered from diabetic retinopathy, which basically means that the blood vessels in the eyes were leaking.

Between 2010 and 2014, while undergoing 24 separate laser eye surgeries (each involving the ophthalmologist shooting 600 laser points into my eye while I am awake and screaming), I was visiting the doctor and his support staff about once every two months, if not more often. It was like Cheers – everybody there knew my name! I would often joke that my punch card must entitle me to a free surgery after all the previous purchases I had made! (Ok, so I never said it was a good joke….)

And for most of my 33+ years being a professional patient, I have been very fortunate to have had some wonderful doctors. But as I started seeing more and more specialists (you know, rheumatologists, breast surgeons, general surgeons, orthopedic surgeons, endocrinologists, neurosurgeons, neurologists, pain specialists, urologists, gastroenterologists…basically anyone with an -ist or a surgeon in their title), I started noticing how some of these doctors ran their practices somewhat akin to puppy mills. There was no getting to know the patient or their concerns. There was no getting to know the patient’s history, beyond what you can cram into the 2-4 paged patient intake forms that have become the bane of my existence. In fact, there was almost no speaking between the doctor and patient at all. And if I had a particular question or had the nerve to ask about alternate treatments or potential side effects to a new medication (especially considering how it may interact with the multiple other medications I am already on), I was repeatedly dismissed or downright ignored.

After I had my 24 laser eye surgeries, and after also having had two vitrectomies to remove blood from my eyes after they both hemorrhaged, two cataract surgeries, two surgeries to remove scar tissue from the new cataract lenses, and about a half-dozen Avastin injections into my eyes, my ophthalmologist in Rhode Island explained to me that there were no more laser surgeries to be done. My eyes had developed so much scar tissue from all of the previous surgeries, there was no way to get visualization of my leaking blood vessels. All that was left was to keep monitoring my vision and hope that I did not become blind.

Once I moved to Texas, I made an appointment to meet with a new ophthalmologist in the area. I filled out those godforsaken patient intake forms, was taken in for some initial tests, and then went in to see the doctor. He quickly did a visual scan of my intake forms and then said: “You haven’t had any eye surgeries in the past, have you?” …. Not off to a great start. I then explained my vast surgical history, and told him that it had been over two years since my last laser surgery.

Knowing nothing else about me (other than the fact that I was an insulin-dependent diabetic and had an extensive history of diabetic retinopathy), this doctor decided to then ask/accuse me of the following: “Why has it been over two years since your last laser surgery? Is it because you’re neglecting your diabetes?”

Excuse me. Had you asked me politely (and allowed me to actually respond), I would have told you that my prior specialist was unable to do any more surgeries because of the excess amount of scar tissue in the eyes.

After hearing my explanation, the lovely doctor then conducted a visual exam of my eyes and concurred with my previous doctor’s analysis.

I was actually astounded by this man’s judgment of a patient he had met only moments before! Could he not help himself but to speak condescendingly towards a patient who had been suffering from Type I diabetes for almost thirty years? As if this patient wanted to be at risk of going blind, and had chosen to do nothing about it?

I have so many more horror stories I could share with you, but I’ll spare you the pain and go on to finally make a point.

I understand that medical professionals are overworked. I understand that they have to deal with insurance companies and with federal regulations regarding online patient records. I understand that some patients are a handful, and are doing little-to-nothing to help themselves have better health.

Indeed, as a criminal defense attorney who ran her own practice for 5 years, I have certainly experienced being overworked, underpaid, overloaded with paperwork and unappreciated by the most time-consuming and frustrating clients imaginable.

But as a professional who has advanced knowledge and/or training in his or her area of expertise, you have an obligation to your patients/clients to help them in their hour of need. Now, I may be a bit biased in this regard. I always tried to follow a holistic, client-focused method of practice, even if it was at my own expense (health- or time-wise). I tried to empathize with the fear a client faces when arrested or incarcerated for the first time, or with the despair an appellate client starts to feel when he is facing a lifetime in prison if his appellate remedies are exhausted. I have taken the time to consider how a client feels when people are picketing outside of his family’s home, or how alone a client with mental health issues feels as he spins ‘round and ‘round the revolving door of imprisonment because he is homeless and doesn’t have the mental capacity or wherewithal to obtain the proper medication to quiet the voices in his head.

I know that there are patient-focused doctors out there, just as I know that there are an excessive number of careless or profit-obsessed attorneys. But there seems to be more and more medical professionals who are angry at the current status of the health care and insurance systems in America, and are taking it out on their patients.

Remember to find the humanity in each and every one of your patients. You are treating a human being, not a medical cadaver. Each person’s body is unique and carries with it its own set of medical issues and bodily limitations. Therefore, not every patient’s body is going to respond the same to the same treatment protocol. You are no longer in med school, being quizzed on a hypothetical set of facts presented for your diagnosis. Your patient is likely to be afraid, maybe even terrified. They are counting on you to help them understand what is going on; whether they have a clean bill of health or have 3-6 months to live. The very last thing he or she needs is to feel judged.

So maybe you can take a few more minutes out of your busy schedule, look up from your laptop and have a face-to-face conversation with your patient. If my own history as both a lifelong patient and a former owner of a professional services practice is of any indication, your practice (and your soul) will never suffer from treating your patients with even just a bit more empathy. And it will make all the difference in your patients’ lives.

To read more of my thoughts on this subject and more, please keep an eye out for my upcoming book, and feel free to follow me on Twitter at @katherine_itacy

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Welcome, readers!

My name is Katherine (Johnston) Itacy, and welcome to my site! I intend to use this site to explain who I am, the journey I’ve been on, and the lessons I’ve learned along the way.

Born and raised in Warwick, Rhode Island, I am a 29+ year-long Type I Diabetic who threw the 20-pound weight and hammer throw in high school and college. After setting both state and national high school records, winning eight national high school championships and competing in the 2000 World Junior Track and Field Championship in Santiago, Chile, I earned an athletic scholarship to Penn State.

Later, I earned an academic scholarship to Roger Williams University School of Law. I loved law school; I joined both the moot court board and the trial team, conducted research for several professors and a private attorney, and graduated fourth in my class. I spent a year working for a private criminal defense attorney before pairing up with a classmate in his practice, and eventually, going out on my own. I spent five years running my own law firm in Rhode Island and Massachusetts, focusing on pre-trial, trial and appellate work for criminal defendants, and hearings and appeals for convicted sex offenders. I joined the Rhode Island and National ACLU board of directors, as well as the Rhode Island Association for Criminal Defense Lawyers board of directors, and did pro bono work for both the ACLU and for indigent criminal defendants.

Running my criminal defense law firm was the most rewarding experience I have ever had, but it took its toll on my diabetes. During four of the five years I ran the practice, I underwent over three dozen surgeries. Diabetes had attacked my eyes, my hands, and the nerves in my elbows and wrists.

In November of 2014, I took a job in Del Rio, Texas, as a legal research and writing specialist for the Federal Public Defender’s Office for the Western District of Texas. I loved my work there, but my health began to deteriorate further, to the point that I could no longer perform my job responsibilities. I developed an incurable spinal nerve pain disorder called adhesive arachnoiditis, as a result of a 1988 lipoma/tethered spinal cord surgery. The diabetes has also caused benign tumors to develop in my breasts, and has damaged the nerves in my lower body.

For the last 22 months, I have been on a mind-numbing journey to find adequate health care, including a sufficient drug protocol to help alleviate my daily pain. I have also had to adjust to my new quality of life, and to accept the fact that I can no longer pursue my life’s calling.

I hope that you can use this blog site (as well as the book I am writing) as a resource. I will be using both the site and the book to document my life’s journey, and to share some of the life lessons I have learned from living in a diseased body. My poor health has motivated me to live the fullest life possible, but I have days (as I am sure that many physically disabled persons do) when I feel as if the medical system and my body have failed me. We all need an avenue to vent our frustrations, and to feel as if we are understood. I hope you will find that you can do those things here.

I look forward to hearing from some of you as to what struggles you have faced with your health and with the medical system in America. We all need emotional support from time to time, and I am confident that we can find that in one another. I wish you all good health, and a full, happy life!

Sincerely,

Kate