Real People, Real Paleo—Jolaine’s Story (and how difficult getting an accurate diagnosis can be)

December 18, 2012 in Categories: , by

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“Real People, Real Paleo” is a series of posts written by real people who were inspired to share their paleo story with you.  There is such diversity in the challenges that bring us to a paleo diet and lifestyle and in what we hope to achieve by adopting them.  These stories are intended to be a place of inspiration, written by real people, showing the diversity of our needs and our approaches to this way of eating and living, and explaining how each individual’s implementation of paleo meets their needs.  By sharing these people’s stories with you on my blog, I hope to redefine what paleo success is.  I do not believe that eating paleo is purely about losing weight, gaining muscle, and having 6-pack abs.  I believe that paleo is about being healthy enough to thoroughly enjoy life, whatever that means for you, and about sustainability for our entire lives.  If you are interested in writing up your story, use the form on this page to contact me.

So, I’m not in the habit of commenting on stories written for my Real People, Real Paleo series.  My preference is to let these stories speak for themselves.  But, I wanted introduce Jolaine’s Story with some amazing (and horrifying) statistics.  Autoimmune disease can be challenging to diagnose because it often presents as a collection of vague symptoms (such as fatigue, headaches, and muscle or joint aches).  Too often these symptoms are dismissed as signs of not getting enough rest, working too hard, life being too stressful, being over- or underweight, or our bodies just getting older.  What’s more, because there are no “autoimmune specialists”, we see doctors who don’t necessarily have the appropriate training to accurately diagnose these diseases (instead we see specialists in the organ or system that is showing the most symptoms).  A survey performed by the American Autoimmune and Related Diseases Association, Inc. (AARDA) showed that the majority of patients later diagnosed with serious autoimmune conditions had a difficult time obtaining a diagnosis.  In fact, 45 percent of these patients were labeled as hypochondriacs in the earliest stages of their illnesses.  Jolaine and I have had several back and forths via e-mail (and facebook and pinterest!) and I asked Jolaine to share her story because I believe it will resonate with many of you.  And I hope that by sharing Jolaine’s decades-long battles with undiagnosed autoimmune disease, that someone out there will have a lightbulb moment and will be armed with knowledge and confidence to request the right diagnostic tests from the right specialists and finally find their answers.

This is part 1 of 2.

I’ve had an auto-immune disorder for 20 years, but it took that long to get a diagnosis of Ankylosing Spondylitis along with the IBS, hypothyroid, and “unexplained” amenorrhea.  This journey has been incredibly difficult on so many levels, so much so that it’s hard to know where to start.  The logical place is the beginning, and I will focus on the exasperating quest for a diagnosis and help within the medical community.

I remember the beginning of my symptoms very clearly.  I was a newlywed and 21 years old, and had never given my health much thought, care or attention.  Up until that point in life I had a huge appetite and ate anything and everything in rather shocking quantities.  As an adult I was always around 100 pounds soaking wet and I never exercised regularly aside from being in Track and Field during high school.  At first all the random symptoms seemed mostly bothersome, but not of great concern.   On my honeymoon in Mexico I became very ill and learned later I had a parasite known as giardia.  I had no appetite, great fatigue, and intestinal distress.  My weight dropped considerably and I collapsed at my new job.  I took the prescribed medication and that was the end of my doctors’ suggestions for treatment, but I never really felt the same.  My tummy trouble continued and has never stopped.  Within about 6 months I started having shooting pain in my legs and hips and great difficulty walking.  I would take a bus ten blocks to work, go up the elevator and sit in my office where I wouldn’t move all day as much as it was possible.  It was then my journey with doctors of every kind started.

My first forms of treatment were to see a chiropractor, podiatrist, massage and physiotherapist.  I was twisted and turned, cracked and hung from my feet, electrodes attached all over me, heat and ice…and on and on.  None of this helped me at all.  I then eventually went to a rheumatologist who declared I had rheumatoid arthritis without one single test of any kind, only based on a 5 minute discussion.   I left with a prescription and never went back.  Another rheumatologist was referred by my GP and this time I was injected with radioactive dye and lay very still on a cold hard table, in a cold dark room, while a scanner went down my body following the dye as it travelled through me.  I remember this was a lonely and quite scary experience.  We trust doctors to do what’s best for us, and that no harm will come from the medicines and tests we undergo, but I wasn’t so sure this time.  The results of this test showed nothing.  By this time, I could barely walk at all, ever.

My husband and I made a move to another province and I started all over with new doctors. I remember very distinctly every morning before he left for work, my husband would pick me up and carry me to use the washroom, and put me back in bed where I’d stay most of the day.  I had been given the name of a chiropractor nearby who was apparently different from the rest and decided to give that a try, as I had no other options or ideas.  He did help and I started to see progress and able to walk again most of the time.  I carried on like that for many years, with times I was in excruciating pain, and other times I could walk just fine.  Sometimes even on the same day!  It was unexplainable to anyone, including myself.  I paid privately for an MRI and that also didn’t explain the mystery.  Simultaneously though more symptoms had begun, and the state of my health started to decline gradually.

I think I was around 26 years old when I stopped getting my cycle, and my tummy trouble was starting to get to the point where it affected my daily life in much more impactful ways.  I socialized less and less as it always involved great anxiety and in order to go anywhere for more than a few hours, I’d have to either not eat, or eat very little for a day or two prior.  This is zero fun for someone who has a huge appetite!   So in addition to my chiropractor and massage therapy, I was sent to a gastroenterologist, gynecologist, and endocrinologist.  The waiting period to see these specialists was often over a year.  Looking back I estimate I saw about four different gastroenterologists, three gynecologists, and two endocrinologists.  Going to appointments and tests was like a full time job, and doing it while feeling horrible and in tremendous pain was gruelling, and lonely.  The types of tests I had were often humiliating, painful, and downright disgusting.  I often felt like a little kid who had done something wrong, sitting on the other side of a desk watching a doctor tap his pen only to hear the most absurd comments and usually implying it was all in my head.  I also started seeking help from different naturopathic doctors as well, and this was very expensive and confusing for me because of the conflicting information between mainstream medical, and the alternative medical community.  It was around this time I had started reading everything I could get my hands on and started a quest to learn and be my own health advocate, to regain some control and power in my life in a time when everything felt completely out of my control.

If I think back to all the times I sat in a chair and listened to what a doctor had to say to me that was rude, mean, ridiculous, condescending, exasperating (you get the idea) I couldn’t possibly count.  Here is a very small example of those comments (summarized):

  • You want to bleed?  Is that the problem? Because I can do that.
  • Go home, sit on the couch for a good 6 months and eat pizza and get fat.
  • You are under a lot of stress and I think you need anti depressants?  Where is your stress coming from?  Is it your marriage?  Have you considered divorce?  Next time I see you I would like to see you making progress to filing for divorce.
  • We have an extra room in the hospital you could stay in.  It’s in the psych ward and you’ll be taken very good care of.
  • I think the best thing we can do is to cut everything out, your entire colon.  You could lead a very normal life after that.
  • That last doctor is a fool, don’t every see him again.
  • This is as good as it gets.  You are just going to have to manage.
  • I don’t know (at least that’s honest)
  • Read this book, and this book, and this book, breathe, be positive, do yoga, count your blessings, make a list.(not all bad advice, but not a solution either…I heard this as “it’s all in your head”)
  • There is no reason for you to be in pain.  Stop using those crutches and just walk.
  • You are faking this.  You are pushing out your tummy on purpose to look bloated. (at which point my generally quiet non-confrontational husband let out a string of expletives)
  • Just make up your mind and do it.  Get up and walk.  It’s mind over matter. Be positive.
  • I don’t know what there is to be stressed about.  You have a home, a husband, food on the table.  What cold possible cause you stress?  (um, well I can’t walk and it hurts, a lot)
  • Every time I see you, you have negative things to say.  Next time I want to hear only positive.
  • Aside from your hypothyroidism, your IBS, your Ankylosing Spondylitis and terrible fatigue, you are in excellent health!

This is off the top of my head but there are so many more.  Stress.  That’s the word that kept coming up over and over as the cause of it all.  In part that often made me feel like it was an easy answer for them to give and send me home, or it was my fault and within my control to change.  It felt like blame or that my condition was intentional.  When repeatedly asked very personal questions to pinpoint the cause of stress in my life, I repeatedly said it’s THIS….feeling horrible and pain is my biggest stress!!  I have actually been accused, more than once, of being a hypochondriac and a drama queen simply to get attention, from both doctors and “friends” and family.  I took it to heart though and learned all I could about stress and found it’s a fascinating topic actually.  The amount of damage stress can do to a body is remarkable, but most people only consider stress as things such as financial, relational, emotional stress etc, things that are quite easy to pinpoint and obvious.  To our body anything that raises cortisol is read as stress.  Too cold, too hot, hungry, tired, lack of nutrition rich food, pollution, noise etc.

I did see a few therapists over the years to help with the emotional toll it was taking on me.  The emotional aspect is a whole different aspect of being unwell for so long, but it’s huge.  Really, really huge.  For the most part I’d say for me, therapy didn’t help at all.  I don’t profess to be brilliant, but what I was being told was common sense to me, and did not equip me with tools I didn’t already know.  It was one of those therapists however who had recently taken an interest in brain waves and suggested I see a clinical psychoneurophysiologist.  A what?  Exactly.  I was desperate and just willing to try anything simply as a matter of just ticking things off that endless list of possibility.  So I went.  My husband would drive me to every appointment and I would lie in the back seat of the car curled up in a ball while he drove.  At the appointments I would sit in a chair with electrodes attached to my head, and sounds in my ears, in the dark.  None of it made a lot of sense to me, but I remained open minded and willing.  It cost thousands of dollars, and hey, if the waiting room is full it must be worthwhile right?

Five years ago, I accidentally and slowly overdosed on acetaminophen over a four month period during which I was completely immobile and in excruciating pain.  I had no help whatsoever, and despite my pleas for help, I was always sent home.  Perhaps they thought I was faking and just wanted good pain drugs, it’s hard to say for sure.  It was a very difficult and dark time in my life and I had no hope left.  I was exhausted, lonely, angry, and many of those long dark nights lying awake just trying to breathe, I didn’t care about being alive anymore.  There is a huge difference between being alive, and living.  I was merely alive.  After months of sleeplessness and mind numbing pain, I really didn’t care about how many pills I took, I just wanted relief.  I would take three Robaxacet every 4 hours, and often one Excedrin when I woke up with a terrible headache.  This was a symptom of the toxicity in my body from acetaminophen, but I was unaware of that.  I remember sitting on the edge of the bed with my husband holding an empty bottle.  I knew the day I bought it, and now it was empty.  A quick calculation and we knew it was way too much, but we didn’t fully understand the consequences and didn’t have an alternative either.  I remember saying “we need a different solution”.  It was only a day or two later that I was hospitalized.  In hindsight we could see I had started showing symptoms of overdose for a few days prior to hospitalization.  I was talking nonsense often and just not making sense at all.  I remember an argument we had when I was sure my best friend was in the bedroom and my husband was being too loud and going to wake her up.  I argued fiercely believing that to be true, but at some point I realized it wasn’t.  I didn’t understand what was happening, and went and hid in the bathroom and cried.  When he came in to find me I completely lost it and screamed and cursed at him at the top of my lungs fearing he would accuse me of being crazy, and honestly ashamed of being wrong.  This screaming and cursing is completely uncharacteristic for me, and I’m sure he was stunned, because I sure was.   From about this point on, I have no memory for about 4 or 5 days.  I only have the stories I’ve been told from those who were around me.  I was delusional and hallucinating, I was violent and cursing, I tried to escape the hospital and succeeded as far as getting down the stairs, I sat topless in the common area, ripped out my IV repetitively and tried to flush my pillow down the toilet.  My hands were tied down to my bed after I bit and kicked my husband while he tried to hold me down while I tried to escape.  At this point it became too much for him, and the nurses strapped my wrists to the bed for both of our safety.  They tested me for a brain tumour and honestly I don’t know what else; meanwhile giving me more and more drugs to add to the toxic pile up in my body.  When the liver tests came back they realized I had most likely overdosed on something and began to treat me.  My oldest sister flew from her home to sit by my bed day and night until they could get a 24 hour nurse/guard to be there.  A great big bag of supplements and pills and powders I was taking was brought into the pharmacy for analysis and to try and pinpoint what had happened.  The pharmacist was amazing and took a huge amount of time to find the manufacturer of every supplement, analyze the quality of the products and identify the contents.  It was a huge learning experience for me to learn the importance of buying quality and knowing where it comes from.  In only a few days I had lost all motor skills, I couldn’t control my bladder, I couldn’t talk for a swollen tongue, all the skin from the palms of my hands and fingertips would peel a layer or two every day as did my feet.   My mental fog was very slow to lift as was the whole recovery process. I often felt I was treated as a drug user for a very long time, or as someone who had intentionally attempted suicide.  Still to this day, I feel a label was placed on me that lasts.

About 3 years ago, I started seeing a different naturopath with great hope.  This of course meant another whole battery of testing, a change in my thyroid medication and other hormones, many supplements, 3x/week of colon hydrotherapy, much speculation, more money, more money, and still more money and I continue with this doctor today.  He was as baffled as all the other doctors, but we did make progress and for that reason I have continued as his patient.  Within two months, and after 13 years, I had my cycle back.  Admittedly this was not on the top of my list of things to fix, but it seemed miraculous!!  This didn’t solve the rest of my troubles, but it was a start.  I understand now how the gut is connected to what seems like every function in our body, hormones and inflammation included, and that was the beginning of where it all started for me.  When I think back to that parasite, on my honeymoon no less, it’s almost too much to realize how pivotal it was and how much it changed my life.  My current specialist recently said to me “There is a study done that shows if you happen to carry the gene HLAB27, and happen to travel to Mexico and happen to get giardia, 70% of those people get Ankylosing Spondilitis.  The parasite is the trigger that sets of the disease”.  When I told him all of that was true for me he merely said “oh”.  I wish we had just gone to Saskatchewan for our honeymoon instead!

During all these years I have continued with chiropractic up until a few years ago when I then had decided that physiotherapy using intramuscular stimulation was really my saving grace to help to walk.  Massage has also been a regular treatment.

The problem was, I still had no diagnosis.  I felt from family, friends, doctors and even strangers I shared with and even those I didn’t share with but would gossip behind my back, that it was all in my head.  People struggle to believe what they don’t see.  They lacked faith in my truth and that hurts more than any physical pain I endure.  My symptoms aren’t visible so therefore, I’m often treated with doubt.  I can’t even really verbalize the amount of emotional grief and injury that has brought to me, especially when it comes from those you call friends or family.

Don’t worry, that’s not the end of Jolaine’s Story.  Stay tuned for part 2 which will be posted on Thursday.

Comments

Oh Jolaine… I’m so sorry you had to go through all of this. Boy, do some of those comments you received ring true for me too. I can’t wait to read the rest of your story and find out what happened. Wishing you much health and happiness.

Thursday?? Your killing me. Lol. Can’t wait to read the rest! Those comments ring so true to me too! At 29 I shouldn’t be falling apart but I am. And everyone thinks its stress or anxiety. Um no! Actually don’t have either! My stress level is literally the lowest it has ever been in years. Can’t wait to hear how she found her answers!

Hi Sarah! Thanks so much for initiating these series! It’s amazing to be able to read other people stories and their success upon embarquing on the Paleo Diet. I myself have been struggling with IBS (for 20 years) and with Ankylosing Spondilitis (for 3 years) and have been on the Paleo diet for about a year now. It’s been helping a lot, but pain (at manageable levels) is still a constant of all my nights.
Now, thanks to your blog, I’m thinking of giving the AutoImmune Paleo protocol a shot. Looking forward to how that will work out as well as to Jolaine’s story continuation. Thanks a lot for the work you do and for initiative!!!

Hi Alina! We are the same!! I have the both AS and IBS as well. Paleo AIP has been a huge help!! I totally understand your pain at night. Start AIP today…you’ll never look back.

Jolaine, thank you so much for sharing your story, and I am so sorry that so many people did not believe you. I understand how frustrating it is to have an invisible illness with no official diagnoisis. It is maddening to hear doctors say such things. Sounds like you have been very strong to get through all this. You are a role model!

Wow! Thank you so much for sharing this. I can’t wait for part II! So much of this feels so very (sadly) familiar. I’m so thankful it only took 7 years to diagnose my back pain (thankfully not autoimmune related) but it took over 20 years to diagnose my psoriasis. I can’t even imagine living in such pain for so long. My heart aches for the suffering you had to go through. And it sounds like you have an amazing husband to be there for you through all of this. I’m sure it was difficult for him to watch you in so much pain every day and not be able to do anything about it.

My heart, too, breaks for the pain you suffered, especially the emotional toll.

What you wrote at the end…
“People struggle to believe what they don’t see. They lacked faith in my truth and that hurts more than any physical pain I endure. My symptoms aren’t visible so therefore, I’m often treated with doubt. I can’t even really verbalize the amount of emotional grief and injury that has brought to me, especially when it comes from those you call friends or family.”
…this is the hardest part of all, I believe. I understand, I’ve been there too, sadly.

Kudos to your husband for sticking with you despite it all, and I’m sure it was hard for him to go through too, to believe you but also to feel like the world (esp family and so-called friends) were against you at times.

I’m so happy you have found healing.

Thank you Kate. I’m sorry you have also experienced the emotional battle. And ya, it’s been difficult for my husband too. Health troubles happen to a whole family. Healing will always be a process, I’ll be happy to just slow down the progression at the very least. None of us know what tomorrow will bring, so when I make the most of what I can every day. Hugs to you…

Textbook case of AS and its horribly poor management by your token physcian/’specialist’!
How can this still be such a ‘mystery’ to the traditional medical community? It ticks me off to no end…
Anti inflammatory diets (the Autoimmune protocol, the NSD: No-Starch-Diet, etc.) are all fairly well documented through our most fabulous friend that is the interweb!

Do specialists not ever venture out (on the web) to read up on autoimmune issues? It’s perplexing really, with so much info out there, both anecdotal as well as by ‘smart’ practioners.

Meanwhile the tv ad spots are full of NSAIDs and anti-TNF drugs, along with processed food to oblivion. Fantastic.

Got an autoimmune issue(s)? Go for the AIP. Big adaptation, lots of patience & time required. But it is the way to go. Things can become much better, and you’ll have a great measure of control over you pain & discomfort. Maybe even NO pain/discomfort :D

/kristine

All I can say is Wow and wow. Thank you so much for sharing your story. I look forward to reading part 2. I am so sad that you had to undergo such pain and trauma.

My official diagnosis is undiff spondylarthritis but my rheum thinks early AS. I too can relate to disbelieving doctors- I was told it was hard to be a mom on more than one occasion, and that I needed a vacation. When I had cortisol testing my ob was sure I had to be on steroids because my cortisol was sky high in the morning. Fortunately my new doc (integrative) gets it and says its my body responding to the morning pain and inflammation.
I was lucky, my first visit with my rheumy she ran a bunch of blood tests including hla-b27. So I went home and googled and found kickAS.org and the no starch diet for AS and IBS. Began it immediately, and noticed a difference. That was 4 years ago. My symptoms are getting worse, now includes iritis, and the disease is progressing- albeit slowly and I truly believe diet slowed it down. ive been Attempting Autoimmune Protocol. Just having trouble sticking with it. I need stories like yours, so sorry you are going thru this but I can’t thank you enough for sharing!

I’m SO happy for you that your rheumatologist was so proactive. From what I remember most women go about 15 years undiagnosed. It’s great that you also found dietary help so quickly! I encourage you to take that extra step to AIP. You can find information on this blog how and why some of those foods are causing harm. It’s not easy, I agree, and I’m not perfect either. What really helped me was to think of the damage happening when I ate those foods. To say “just one bite” isn’t helpful. You would never dream of giving a child with peanut allergies just one bite. It’s deadly. Just one bite is like a bite of poison….that’s how I try to think of it and it helps me resist. Also, focus on what you CAN have, not can’t. That switch in thinking is helpful. I’m so happy my story was helpful to you MaryCay.

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