Kirk C. Bonanny

Kirk C. Bonanny

Kirk C. Bonanny Stills Disease History 12/Apr/2004 Clinically diagnosed 8/Apr/2004

I write this detailed history in the hope that it may somehow help me or anyone else who encounters this ******* disease!

I was born 3/Mar/1971 in Wilkes-Barre, Pa. I am 5’6 ½” and usually around 210 lbs. I am happily married for almost 8 years, and my wife and dated for over 8 years before we married. I have 2 outstanding sons, Christopher (5 ½) and Harrison (2 ½). I also have a Sheppard/Hound/Husky (mutt) named Boomer. I currently reside in Jenkins Twp, Pa, which is just outside of Wilkes-Barre. I own (partner) and operate an Automobile Service Garage in Forty-Fort, Pa along with my father. I have been an automobile technician in some shape or form since 1987. I graduated from Wyoming Area High School in 1989, from Johnson Technical Institute (now Johnson College) in 1991 with an Associates Degree in Automotive Technology. I am an ASE Certified Master Auto Technician, among other credentials. I was in the PA National Guard from 11/89 until 11/95, first as an 11B (grunt) and later as a tank mechanic (45E, 63N) on the M60, XM1 & M1 tanks. I only “officially” had two M.O.S.’s, but served in the capacity of three.

I have always been active, even hyper. I take a great deal of pride in my work, my workmanship, my family and my lifestyle. I have played football, little league baseball, ran track to keep in shape for my favorite sport, which is wrestling. I wrestled for a little over 6 years. I have also had a passion for lifting weights since I was 13, mainly to build strength rather than get “ripped”. I have benched over 370lbs, and leg “sledded” almost 1000 lbs, but have not lifted since January of 2003 due to my shoulders getting tired of the abuse from the amount of weight I am used to working out with.

I have changed my lifestyle since I married in 1996, going from fishing every day possible (spring through fall) and shooting in 2-4 straight pool tournaments per week to dedicating myself to family and business. I still fish as often as I can, and enjoy the competition of Bass tournaments. I also take my kids fishing every chance I get. I am a member of a small, private & friendly Bass club called the East Side Anglers, where I am treasurer. My favorite place to fish is the Susquehanna River in the Exeter/Wyoming area. My other interests are anthracite railroad history, model railroading, ridiculously loud rock & roll (& true heavy metal, not this radio garbage) and fast, American V-8 cars. I used to drag race a 455 C.I. Olds 442 at Numedia Raceway, and currently have a ’78 Monte Carlo that I own along with my father. This is my personal history, and my life before Stills.

My medical history is pretty unremarkable. I have usually had a few colds a year as long as I can remember. I have had the same family doctors for longer than I can remember and have seen them whenever the need would arise. I am comfortable with them, and to date wouldn’t trade them in for others. The most significant medical event prior 2003 was a compound fracture of my right tibia and fibula on 18/Jan/1989, due to my brilliancy of riding a “dirt” motorcycle way too fast on an icy mountain trail. I also had what I remember as a kidney infection somewhere around 1992, but I remember little of this and doubt its significance. I was hospitalized for 4 or 5 days during my first week of Basic Training @ Ft. Benning, Ga with a real high fever, chills etc. I had no known allergies, and an ego that would not allow me to recognize pain. I am used to working 50-75 hours per week if need be, and have worked as much as 104 hours in a six day period once. I have never had a drug or an alcohol problem. I have had a few migraines spread out over the years, 2 that sent me to the ER.

Here is my recent history. In late November I thought I had a bad flu. It was going around, and I knew many people who were “out of commission” due to it. The strange thing is that it lasted over two weeks, yet never stopped me from working, and never drove me to see my doctor. I had one neighbor who was hit with it two or three times over a few week period and felt fortunate that it didn’t hit me as bad as it did him.

My holidays were enjoyable, with the only downside being that my best friend could not come up from Tennessee as he had planned to due to work. I never did feel quite right, to the point I didn’t even drink many beers on the numerous visits I had and made over the holiday seasons, including New Years Eve. I felt “in a fog” for most of January, but again, had no temperature or other remarkable symptoms.

Then, 8 days before the Super Bowl, I awoke @ 4:00 A.M. on my couch with a BRUTAL headache, uncontrollable shivering, a sore throat, high fever and the overall inability to move. I had fallen asleep in my basement watching hockey, and could not speak loud enough to wake my wife. I finally mustered up the strength to knock on the wall loud enough to make my dog bark, which woke my wife, around 6:00 A.M.. When she came down, my fever was over 105, and she had to help me get up the stairs, help me dress and drive me to the General Hospital In Wilkes-Barre. When I arrived, my fever was like 103 or so, and I was released approximately 4 hours later. They gave me amoxicylin (sp?) and a prescription for Vicodin.

The following Thursday, the same exact thing happened, and when I got to the ER my fever was still over 104. I was admitted. I had an MRI (w & w/o contrast), spinal tap, MRA, CT scan (head and body) numerous X-rays, urine, stool, nasal and throat samples, countless blood tests. I had been seen by infectious disease, neurology, ENT ???, my PCPs’ and others, I am not sure. I was there for 5 days. My final diagnosis was Tonsillitis and pharyngitis. I was released on Augmenten (sp?) and steroids, which were @ 40mg/day, decreasing 10 mg every second day until discontinuing the steroids.

Results of note from this stay are: Hemoglobin 14.9, hematocrit: 40.8, white blood cell count 19070. The sed rate was 62 then 80, INR 1.13. C-reactive protein: 17.2. The EBNA was 3.99, suggesting past response to infectious mono. Meningeal A/Y was neg, strep pneumonia was neg and croup strep was neg. All other cultures were negative.

Two weeks to the day that I was released the first time, I wound up back in with most of the same problems, a BRUTAL headache, 104+ fever, joint pain, with the main exception being tonsillitis. It “went away”. Another MRI was performed, another CT scan, more urine, stool, nasal samples and such, and again, tons of blood work. My white blood cell count was around 20000 again, but I do not have the other information with me at this time. I was again seen by infectious disease, my PCPs’, neurology and others. They also brought in a rheumatologist. My MRI showed no acute changes. ANA was positive, ferritin was high. Sed rate and CRP were elevated. It was thought I had a viral syndrome and allergic to penicillin. I was instructed to follow up with my doctors after my release. I was on Indocin 50mg for one week. I was released again after a 5 day “resort vacation”.

Prior to being released, I was informed of a few possibilities as to what was wrong with me. I do remember my infectious disease doc mentioning Stills, among others. When I got home, I went right to work, and felt much the same as I had before. That night, I decided to do some research on the net and I found the Stills Foundation website. I read the FAQ’s, and a few histories. I distinctly remember saying to myself… “I don’t want this!!!” “F*** This! Keep it!”

It amazes me just how “right” this first impression was in hindsight! I didn’t know it at the time, as I had no medical information to go on, but I do remember getting that sick to your stomach feeling due to my having many of the symptoms.

The next month was an adventure. I never felt “perfect”, but was able to work. I even intentionally pushed the hell out of myself in an attempt to prove to myself that I didn’t have Stills. I still hope I don’t…..BUT. I took on extra work, worked long hours, and attempted to resume my “normal” lifestyle. All was O.K. until I went to an AHL hockey game with my wife and oldest son. I was in a rather good mood, and had my first few beers in quite some time. I used them to wash down some nachos with tons of jalapeno peppers. (I have a weird ability to eat those things in high quantities. I have gone though a couple of gallons of them per year since my “Army Days”.) The game was great, the W-B/Scranton Penguins kicked the hell out of the opposing team, and a few fights happened right in front of my face. I felt better than I had in some time! Then it was time to leave. As we were walking back to our van, my legs felt like someone whacked my with a bat. The best way I can describe it is “shin splints” one may get after running a few miles after taking a month or two off of running. I also thought I pulled my groin. We probably had to walk 1/3 to ½ of a mile, and by the time we reached our van, I was barely able to walk at all. The next day at work was one of my worst, as I had a hard time walking, let alone bending down, bending over or bending period! I thought about going to the doctors, but was amazed to find the next day my legs felt noticeably better. Two days later, they felt like “their” usual selves. The next day, I awoke with a rather harsh headache over my right eye. The headache was not as severe as the ones that sent me to the hospital, but nothing would take the edge off of it. It was parked over my eye, and the only relief I got was a Vicodin, which I took on day two of the headache. I say relief, but all that it really did was take the edge off and wire me to the point that I did not fall asleep until almost 5:00 A.M. Thank god this was a Friday night, as I do not work Saturdays. I only slept about 3 hours anyway, as some friends and I were going to do some fishing. When I woke up, the headache was over my left eye, barely tolerable. I walked about 4 miles that day in the course of fishing and felt O.K. with the exception of the headache and the “fog” I was in which I figured was from the Vicodin and lack of sleep. That headache was a bit worse on Sunday, and did not move from my left eye. On Monday morning I called my PCP and was told to come in immediately.

Out of nowhere my blood pressure was up to 160/100. It usually is more like 130/82. I was sent for more blood work, which showed nothing. I was told to take it easy for a few days until the results came back. I didn’t.

The headache magically disappeared the next day, and my legs almost immediately started to hurt again. The leg pain was less severe, and more focused around my groin, but there nonetheless. I also distinctly remember how my knees seemed to feel like they were “floating”, and I was unable to walk without a noticeable limp. My legs hurt for three days, than the headache came back.

Upon my wife’s insistence, I went to the University of Pennsylvania for a second opinion. Surprisingly, my headache had decided to “hide” again, but my legs hurt to the point that I could not sit still or walk very well. The doctor I saw there (Dr. Buckley) looked over my medical records which I had brought, examined me, and ordered some more blood work. In speaking with him, I mentioned that my ID doc had mentioned to me the possibility of Stills Disease, and in hindsight the look he returned to me was rather ominous. I was to call him back the following Monday, but never had the chance to as I wound up back in “the W-B resort” again on Sunday night. Worth mentioning from this is that the only thing that came back out of whack from that blood work was some kind of muscle enzyme. It was high.

Let me get back on track. Following my visit to Philly, I returned to work the following day, which was Thursday, April 1st. I felt good except for my legs, and went to our Bass clubs’ monthly meeting. I was in want of a beer, and had two. Friday was uneventful, and my legs felt good. I went to another hockey game with a friend where I had another couple of beers and nachos with jalapenos. I felt so good on Saturday that I decided my wife needed a night out. My parents took the kids for the night, and we went out for dinner, a drink (with dinner) and shopping. Sunday (4/4/04) I awoke at 6:30 A.M. and drove down to a scale model train show in Timonium, Md. I returned home around 2:30 P.M. and sat down to watch the NASCAR race. I must have passed out around 4:00 or so, and woke up around 6:00 with a headache and sore throat. I got up to go eat, and felt a chill. I decided to take a hot bath, but no matter how hot the water was I couldn’t get rid of the chill. Within 2 ½ hours I had a BRUTAL headache, 104+ fever and uncontrollable shivering….AGAIN!!!! My wife called my parents up to watch the kids and drove to me to what she must really believe is my favorite “hiding” spot. I was admitted with a 102 fever for observation. I was given morphine (absolutely no effect) and then dilaudid. Well, observation didn’t last too long, as the fever spiked to 104+ and I was in obvious agony. That Sunday though Tuesday made me wish I would die. This is no joke. I have never felt pain like that in my life, my whole body, head, and even my hair seemed to make me want to die. They doubled my dose of dilaudid, which at least allowed me to sleep for short periods of time between tests and blood work. Another MRI was performed, and I was given a new rheumatologist and neurologist. I had the same ID Dr. I also had one of my PCP’s, the other was on vacation.

I had a reoccurrence of one thing I forgot to mention that first happened to me after my second hospitalization, an insatiable itch. I itched so bad that I would have allowed someone to burn me alive. I scratched so hard an often that I would bleed. The weird thing about the itch is that it only comes around night, and usually goes away in 10- 12 hours. It happened for 4 nights the first time and has been consistent since last Tuesday.

I was released from the hospital on Friday, 9/Apr/2004. I was essentially told I have Stills on Thursday. I had my first “rash” on Thursday night, and my left wrist swelled up pretty bad less than two hours after coming home. I have little appetite, which may be what I need as I gained about 15 pounds since January. I also do not feel that great, can’t sleep and wake up soaking wet with sweat whenever I rest.

My emotions are hardly in my control for the first time in my life, and I am truly afraid. I am hovering between resentment, anger, sadness, among others and I have become rather vicious towards others with little or no provocation.

I am currently on a fast declining dose of Prednisone (sp?) among a few other pills. I will post this as I get time. I do plan to keep this up to date to a point where I will hopefully not have to deal with Stills any longer.

Update as of July 25,2004.

I am pretty much in constant pain, some minor, some horrible. I also have been suffering from brutal headaches that literally swell my eyes to the point where I look like I went 12 rounds as a punching bag. I had 19 of these headaches from mid May through mid June, a 2 ½ week break, and they are back with a vengeance. My other pains are (or have been) my knees, with my right knee being the worse of the two, ankles, feet, wrists, elbows, lower back, neck, hips, shoulders, chest area, among others. My knees, ankles and wrists are almost always bothering me.

I was never able to come below 20 mg/day on the Prednisone, and to date that is the same. I was started on Enbrel in May, but it hasn’t done much for me yet. I also have started numerous other medications for various reasons. I take a pill for my blood pressure (that used to be good), an anti depressant, a few pills that are “supposed” to prevent these headaches, etc. I did go to a pain management center for my headaches, as I am totally dissatisfied with the lack of answers I get everywhere I turn. The Dr. there put me on Neurontin. I am stepping up my dosage 300 mg/week until I am at 1800 mg/day. I am currently at 1500 mg/day, but I am still getting pounded by these headaches.

I keep wishing it would go away or kill me already, as I am hating every F******* minute of this!

I am going back to The University of Pennsylvania in late August to see the Chief “Rheumy”, as my current Rheumatologist is out of ideas. Aside from not being in the hospital, I actually feel worse now than when this began.