How to start this… I was raised a Navy brat growing up on the eastern seaboard. Dad was typical navy sailor and we usually lived in Navy quarters. Growing up Navy dad would usually go to sea for 6 mos and then come home&when he came home it was party till ya puke or pass out time. Dad and mom grew up in the war yrs and the usual thing to do was drink heavily and smoke cigarettes&while the drinking was going on, it would usually end up with fighting. Growing up to the age of 18yrs old I joined the USAF as an enlisted airman and thought working near fighter jets was about as cool as you could get. However it was weird..I was a navy brat&so&after 6 yrs I got out and went to college.
I’m a design engineer by trade where I worked for the marine industry designing Nuclear attack submarines and surface combat ships. These are the types of ships that men go to war and hopefully would defeat the red menace at the time. I’ve worked on top secret projects that would normally make your hair stand up. Due to my Clearance, I couldn’t bring my work home, which cost me 1 marriage, but I gained a new bride after a few yrs&my present wife and friend of 23 yrs&she worked in the defense industry also for many yrs and understands why I put things into it’s proper boxes. My experiences trained me to compartmentalize my feelings and thoughts&what was at work, stayed at work, what was at home..stayed at home. Thus I evidently trained myself to put things in boxes where they would stay until it was needed.
I started working for the Dept of the Navy in 1980, but as a kid, I always would run or ride my bike to the airfield that we lived near to watch fighter jets take off and after 17 yrs of designing, working on Navy ships and submarines, I finally got to complete a dream of working on airplanes. &..Thus my career in aviation started at The Boeing Company in Everett, Washington helping to design the Tai airlines 747-400. I changed jobs to Customer engineering where I was responsible for several options offered on all models of airplanes Boeing builds.
While I was working at Boeing, I was trying to develop a side business of photography, doing weddings, portraits and special events. I was shooting between 50 portraits per month and 14-15 weddings per summer. Not counting the special events. The stress was becoming incredible.
The yr is now 2000 and Boeing and the engineering staff can’t agree on a union contract, so we went on strike&Now most would say this is no big deal, but after several yrs of psychiatric analysis, I found several things about myself that I didn’t know. 1) was the compartmentalization of my feelings. 2)I have more than 2 brain cells left that often fight when I least expect it.
I went on strike thinking logically that what we were all going on strike for was justified. But remember, I’m a military brat by birth, trade, training and soul.
I started having a fight with myself internally about going on strike. Yes it was the right thing to do, to support my fellow workers, to defend our rights and to make sure The Boeing Company wasn’t trying to screw us. And then the other side, being a military brat and all that what I was doing was committing mutiny. Going against my leaders and the orders of the company which pays me a salary to go to work. Most people won’t get the fight I was going thru but we talked about it for quite awhile after I was diagnosed with SD.
Now comes the part where we went back to work winning the strike and being hailed returning heroes&.once things settled down my wife decided we needed something to relax on. So we shopped and (knowing how I am about boats and ships), suggested we get a boat.
Off to the boat show we go, where we find this lovely 24 ft cruising boat. The time comes to take our first weekend out and I find several things about a boat I never knew!!..1) they don’t have brakes!!2) they are a lot of work to get set up, care for and drive.
Our first outing was unbelievable&I crashed into the docks..I also didn’t know much about the tides up here in the pacnorwest where we can get a 32 ft tidal swing, and then the winds&Oh my god&who ever thought that a little puff of air could move a boat sideways away from a dock when your about to jump off to tie it down???? And I’ve never driven a boat before, I’ve ridden ships before&destroyers, submarines, aircraft carriers but to drive my own boat is a totally new adventure. And the stress of that weekend is what did me in. The stress pushed me over the edge.
We docked at our marina and my hands had instantly blown up like rubber gloves. My legs cramped up to where I couldn’t walk up the ramp. I felt badly cuz I couldn’t empty the boat of our gear. I had to leave that to my wife. I couldn’t breath to save my life.
The next day she took me to our Dr’s office where he looked at me, examined my skin some, and took some blood. After he got the blood work results back, he didn’t see anything of interest.
This went on for 8 weeks where I was getting worse. Not being able to walk to the bathroom some 6 ft away without stopping to catch my breath. Every couple of days I’d go back to this doc to get the same thing&your blood looks good but I just don’t know what I’m looking at.
After the final blood test we got upset with this doc and I told him to either refer me to a specialist or I’m going over your head taking his job with me! We had this big screaming match in his exam room where he finally picked up the phone and called another specialist in rheumatology.
This is where we met up with Dr. Sean Slack here at the Everett clinic. Sean listened too me and my wife tell him what had happened. He promptly set me up for about a dozen tests, Dr’s and exams. I was radiated, CT scanned, drained of blood for tests, echo’d, and had some tube stuck down my throat into my lungs for a biopsy. There wasn’t one single orifice or gland that wasn’t examined, inspected, radiated, and photographed in some way or another.
After all the tests came back Dr. Slack said he was 99% sure I had systemic Scleroderma with lung involvement. Which explained why I couldn’t breath, or walk more than 6 ft without stopping to catch my breath.
Marsha had heard of another PCP doc in Seattle and promptly hooked me up with him. He believed in full body treatment. Meaning mind and body treatments for the auto immune diseases. Hence the 4 yrs of psychiatric sessions once a week where I discovered the putting things into boxes theory came into play.
Dr. Slack had me go to Seattle to see a specialist by the name of Dr. Furst. Now Dr Furst read Dr. Slack’s notes and concurred with his diagnosis and told me what my disease meant. In the meantime Marsha had already done the research on the web and found out what it was. She didn’t tell me because she didn’t want to stress me more than I was already. Dr Furst kept me coming to his office for about a yr and between Dr. Slack and Furst. I was seeing some sort of Doctor every week.
This went on for the first yr. of course treatment started in the form of drug therapy. I hate pills and shots, and any form of needles. I was getting more blood drawn from me than a Vampire would ever drink. I was again tested and analyzed more than any lab rat could expect. My drug regiment consisted of 100mgs x 3 of cytoxan, 250 mgs zofran for nausea, 250 mg of diltiazem to get blood to my fingers, 10mg of prednisone for swelling, various vitamins from C to D and iron.
I was taking about 36 pills per day.
Marsha (my wife) was desperate to find a cure or something that would help me. She searched the web every nite or at work, read all the medical sites she could find until she found an article from some doctor in boston saying he felt that he thought that Scleroderma had an infectious, bacterial cause and that antibiotics in low dosages were a possible treatment for SD. On our next visit to Dr. Furst, he absolutely poo’d the thought of me being treated by an antibiotic. But Dr. Slack was open to any treatment. If I wanted to go to physical therapy, he’d write me a script for it to make the insurance pay for it.
If I needed a handicapped sticker, he’d write me a letter for that. When Marsha brought up AP to Dr. Slack, he didn’t say no at all&he just wrote me a script and I got 100mgs of minocycline x 2 per day. He felt it was low dosage enough where it shouldn’t hurt me.
Now some will ask why I went on cytoxan instead of the other drugs commonly used. I was offered them but was told that because of my lung involvement, the stronger cytoxan was needed to stop the progression of my lung loss&I had gone down to 28% loss of my lung volume. He felt I was about this close to being put on oxygen. So the decision was for me to get on cytoxan as soon as possible.
I was on this drug regiment for about a yr and because of the minocycline was causing me to have this killer tan from florescent lights, I had to change over to tetracycline. Which I’ve been on ever since..I often joked about it when people would ask me where I had vacationed..in the Bahamas or some place. I’d say nope..but I’m getting my 7/11 next week!!
Finally after about 2 yrs, I started seeing an improvement. I had been attending a deep tissue massaging once a week to help squeeze the calogen out of the muscles and skin pockets (when I say deep tissue..I mean the kind that when the therapist feels an internal organ, they go deeper), physical therapy to attempt to maintain strength, talked to a psychologist once a week for an hr. taken 36 pills per day, and done about everything possible to distress.
One day I was washing the boat and staying in the zone where I could go practically all day without getting winded when I stopped to take a breath and wipe my forehead when I realized the tightness of my chest wasn’t there. I could breath&I mean I could really take a Breath without me gagging or coughing up a lung part!!…something was changing.
We had our normal 6mos meeting with Dr. Furst one day and I told him that I was breathing better. He grabbed his stethoscope and listened, then listened some more. After a few minutes he said. You know Steve, when I first met you, I didn’t give you 6 months to live. I thought of you as the walking dead and I’d never see you after the second visit. Here it was 2 yrs later and I was still walking, and improving. He told me that he didn’t need to see me anymore, and that Dr. Slack could take it from here.
Now it’s 10 yrs later and I’m still vertical, still boating, still working at Boeing, and very stable. As a matter of fact, my last visit the other day with Dr. Slack, I asked if I ever had to worry about SD ever raising its ugly head again. Dr. Slack told Marsha and I that some people get SD where it attacks until it kills, some people get it where it attacks and stops, then goes away and never comes back.
The data isn’t there to really determine how it’s going to react but the consensus is that once you recover from it, as long as I maintain a low stress lifestyle and healthy living, I should finish out my time here normally.
Now when a doctor says he didn’t give me 6mos to live, it kinda wakes you up some. Makes you realize a few things. Like the important things in life are family, friends, so called smelling the flowers. You try not to waste time with stupid things in life. You have little patience with waste and ignorance, and you also find you think a lot about your mortality. Life suddenly becomes a challenge to live to the best you can. To help where you can. And to give back whenever you can.
I’ve been a moderator on a few sites, one boating and a scleroderma site. The one thing I wanted to bring to the table for people that contract this awful disease is that you can fight it, but it’s going to take team work. A full up team of Dr’s and therapists all working on the same page towards the same goal. Your health. All of them were sending their chart notes to Dr. Slack. He was my quarterback in this fight. If he didn’t think it was worth it, he’d tell me about it. If it was a good idea, he was open and would do whatever he could to get it done for me.
It was a hard 10 yrs so far, but I feel like I won the fight of my life with the help of my wife, family, friends, Dr’s and faith. We were determined to do anything possible to lick this thing attacking me.
One other thing I’d like to point out is that Marsha kept a daily diary on me. She also correlated all data, from lab reports to articles she ran across about a possible treatment into a 3 ring binder. When I talk to someone new about SD, I mention to them about starting and maintaining a 3 ring binder with all the data on them. Reports, articles, lab reports, even how your feeling today, or any questions you might have. Put it in the binder! All of it goes into the binder. Even Dr. Slack would get nervous when we came into the exam room. But he’d take the time and answer our questions or concerns.
So&when I talk about this disease, I talk with authority and determination that your not alone in the fight, that if I can do it, so can others. It’s hard. It hurts and it’s not easy by any stretch of the imagination. But it can be done.
I hope this inspires someone to never give up the fight&never surrender to the disease.