Written by Susan Thomas:
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Dear Robb:
I wrote my first draft the old-fashioned way with pen and paper.? Not just any paper, mind you.? I wrote in my trusty journal where I track everything from my WOD?s, to the food I eat, and many, many thoughts, feelings, and desires in between.
I was honored when you asked for my story.? Yours resonated with me immediately; especially upon hearing your mother also has SLE.? We have actually spoken (or skyped, as it were) about two years ago in a nutritional seminar where you suggested I increase my fat intake in the morning.? I was counting salmon pills as a fat.? You correctly pointed out that it was a supplement.? I digress.
My story started long ago, when I was about 11 years old.? I started to loose weight and generally felt awful.? When the doctors ordered blood tests, it was discovered that my blood count was abnormal.? In fact, it was so low that I was hospitalized almost immediately.? For the following year, I was in and out of the hospital.? No treatments seemed to help the ?blood disorder?.? The doctors ordered a bone marrow test because they were convinced it was leukemia.? Just before I had the test, I had a normal blood test.? I don?t remember much from that time.? My roommate died in the bed beside me, which stays vivid to this day.? The only other memory was the pain.? Even the gentlest touch hurt.
Fast forward about six years.? The sick 11 year old has grown into an active healthy teenager.? Then I started to get these awful, painful, swollen red lumps on my claves about the size of golf balls.? They would come and go, but my doctor could not seem to pin down a cause.
Over the next decade, the lumps would continue to come and go.? It is called Erythema Nodosum and is relatively harmless.? I had one biopsied.? The only comment the doctor made was that I had a positive ANA test at the time.? It meant nothing really, according to the doctor.? False positives happen all the time.
A few years later, I contracted a viral infection.? The worst side effect was loosing my voice for a week.? My husband thought this was wonderful.
It was strange though, because I didn?t bounce back.? I was always fatigued, loosing weight and it literally hurt to touch me.? It reminded me so much of how I felt as a child with that ?blood disorder?.? I also had a severe pain in my lower back.?? I saw my family doctor who diagnosed depression.? I left his office with a prescription for anti-depressants.
The symptoms did not improve with the medication.? In fact, they got worse.? I was always feverish and the pain in my lower back was excruciating.? I finally went to the emergency room.? They put me in a room and started me on intravenous morphine.? The pain dulled slightly.? After a battery of tests determined there was fluid near my kidneys, they called in the OBGYN.
As you mention in your book, autoimmune disease is often interconnected.? I had endometriosis pretty much since initial menstruation.? I had already had two laparoscopic surgeries by this point so the logical thing to do was call in the gyno.? He couldn?t tell what was causing the fluid, so he booked an OR for the following morning.
I woke up from the surgery to find the pain in my back had subsided.? The doctor had removed more endometriosis and drained the fluid.? ?Idiopathic? was the term he used for the fluid.? Translation: ?I have no idea what caused it.?
After another few days in the hospital, I was anxious to get out.? I had started a new position within the bank as an investment specialist and was missing some very valuable training on trusts and estates.? My husband took me from the hospital and drove me to the training centre.? I finished the course in a wheelchair.
I came home 5 days later to have my symptoms return, only worse.? The pain was unbearable.? We returned to the hospital and discovered the idiopathic fluid was again, floating around my kidneys.? The IV was inserted and the morphine pumped into my veins, but nothing seemed to help.? Once again, the doctor performed a laparoscopy to remove the free floating fluid.? I was in the hospital over two weeks before they sent me home.
I wasn?t home a week when my fever spiked, the pain worsened and we were once again, off to the hospital.? By now, my blood cell count was abnormal.? The doctors were checking for lymphoma.? All I wanted to do was simply die to escape the pain.? Of course, the fluid was back.? The final surgery was assisted by an urologist.? It wasn?t by laparoscope either.?? They cut me open, removed my left ovary, fallopian tube and part of my peritoneum.
All told, I had 6 admissions and spent over 6 months in the hospital.? I couldn?t do my new job and subsequently lost it.? I didn?t care though.? I was convinced I was going to die.
I was taking long term morphine, statex (short term) morphine, and duragesic patches but nothing worked on the pain in my back.? As one doctor remarked, ?You take enough painkillers to tranquilize a horse.? How on earth are you able to carry on a conversation??
I was bed ridden another year.? I couldn?t even go to the washroom unassisted.? We?d seen every specialist it seemed, but no one could find out what was wrong.? My family doctor finally referred me to my rheumatologist.? He took the massive file I brought and set it aside.? ?I?d like to examine you first.?? He said.? ?So the other doctor?s opinions do not cloud my judgement.?
That appointment changed my life.? He said, ?I think you have lupus? and injected me with Depo-medrol to get the immediate symptoms under control.? I also started several medications including Plaquenil, an anti-malarial, NSAIDS and immune suppressants.
6 months later, I could get out of bed.? I started to take my ?trusty sidekick?, (as I like to call him) our big loveable mutt, who never left my side out for walks.? He was patient.? I counted my progress by streetlights.? I walked to the first one and back.? Over the next month, we worked up to walking around our small block.? I then set a goal for myself to be on a volleyball court in 4 months.? I stopped taking painkillers.
I did play volleyball 4 months later.? My health continued to improve.? I had setbacks over the next few years.? The worst setback was when I herniated 3 disks in my back playing volleyball and ended up, once again, in the hospital for a few weeks.? I just thought it was my typical back pain and kept playing.
The hard part was the immune-suppressing drugs.? I couldn?t tolerate methotrexate and was weak and nauseous all the time.? The doctor switched me to an injectable form of the drug.? I injected myself Friday so I could be sick all weekend and have a relatively normal work week.? I was tired all the time and I was starting to develop cellulite on my legs.? I went to my trainer for advice.? He asked me to watch a simple you-tube video called, ?Paleo in a Nutshell?.? It made total sense.
I have been Paleo now for 3 years.? My body fat is just over 12%.? My weight is 142 lbs (I am 5?10??) and has been steady for those 3 years.? I have so much energy.? I am 41 years old and just PR?d my ?Fran? time- 4:15.? I get stopped on the street and asked what my secret is.
Most importantly though, I have stopped taking immune suppressing drugs!? I went off them in December and I hope I never need them again.
A great thing happened about 2 weeks ago.? I was at Crossfit Orillia and had just finished a WOD.? The next class was starting to filter in and among them, one of my nurses from the hospital over 10 years ago.? ?Hi Kate,? I said.? ?Remember me??? There was a look of recognition and then utter shock.
?Oh my God Susan!? she exclaimed, ?You look so good- so healthy!?? She couldn?t believe the transformation.? ?I honestly thought you weren?t going to make it.?
I honestly thought I wasn?t going to either.? The Paleo diet was the key to my journey back to health.
Thanks for listening.
Susan
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