The LONG frustrating, heartbreaking, road to a diagnosis

I do not have “hyper mobility”.  I have LUPUS!!

I had it all.  I was running my own business and loving it.  I was training for a bodybuilding competition.  I looked and felt fabulous.  My daughter Hannah was doing well in our new life.  I was newly married to the man of my dreams and as if it couldn’t get any better, he adopted my beautiful little girl making us the perfect little family.  I had everything I had ever wanted and more.

My days consisted of waking up at 5am and heading to the gym to jump on the stepmill for 45 mins.  I’d run home, jump in the shower and get ready for work.  Lucky for me, I was financially sound enough to have a nanny who did all the morning chores while helping my daughter get ready for school .  Hannah and I would meet at the front door and head off together every morning.  I would drop her off at school and head over to my office.  I would spend the day either in the office or on a construction site for design planning, or both.  I would pack it up at 5pm and head to the gym again for a weight training session with my coach.  The day ended back at home with us always having dinner together to catch up on each other’s day.  While Hannah did her homework so did Mommy.  I’d respond to all my emails and finish off any work that needed done before the next day began.  Once I got Hannah bathed and tucked into bed I would head down and into my home gym for another 45 minute round of cardio.  Yes, that’s three times a day of exercising.  I was in training to compete and I love(d) it.  I’d jump into the shower right before bed and sleep like a baby.  I did this 6 days a week for 9 months.  No I didn’t send Hannah to school 6 days week but I keep that basic schedule 6 out of 7 days.  I let her stay home on Saturdays.  She said the school was too lonely on Saturdays for her liking.

Believe it or not I really enjoyed my days being that full.  Of course I had days where I had to fight with myself to finish that last cardio session of the day, but I got it done.  I was tired but I don’t think I was any more tired than any other working Mom.  One afternoon I arrived at the gym and set up to do squats and I mentioned to my coach that I was feeling pretty drained.   We eased up on the weight and decided to take it a bit easier.  You have to listen to your body when you are exercising, especially when you are training to compete.  I set myself up, was ready to lift and suddenly I realized that I couldn’t.  Just like that.  I knew right then and there, suddenly, I didn’t have the strength to lift.  I was less than a month away from my competition and I had caught the flu.  Bugger!  “UGH”, I said to myself, “I don’t have time for this”.  My coach sent me home to sleep it off.

That was the last time I was in the gym for the next 2 years.

The very next morning I was awoken by a migraine and when I tried to get out of bed the joint pain was excruciating.  What the hell?  The flu?  And my brain, my brain wasn’t right.  I was dizzy, and confused.  Everything was just foggy, unclear.  It had to be the flu right?  But it wasn’t.  This was my new normal.  Waking up in pain and being unclear.  Suddenly getting from the bed to the bathroom in the morning seemed hard.  Let alone getting Hannah to school and me to work.  How the hell was I going to get out of bed?  The stair-what now?  The gym?  Uhhhm no, let’s try feet on the floor first shall we?

Appointments were suddenly too much to bear.  I had to get up, out of bed, ensure Hannah got to school and perhaps I would make it to work.  Please don’t add an appointment to my day.  I can’t possibly.  Things that had been so easy just a week before all of a sudden felt so extremely difficult, near impossible really.  It began with the confusion and pain in the morning.  Truly it felt like a severe form of the flu, void of energy, but still capable of functioning.  But some days it was so bad that I had to call my office and just cancel my day.  My entire day!  Not cancel one appointment, we had done that for weeks now, but cancel my entire day.  I had never done that in my life.  Not while sick, while pregnant, ever.  But there were days I simply had no choice.  When I found myself crying on the shower floor because I was too exhausted to stand up then I knew I couldn’t make it to work.  I couldn’t see leaving the bathroom, to say nothing of leaving house.  I was running a brand new business with with partners and employees who all depended on me and I couldn’t get off the shower floor.

As the months went by I wasn’t feeling any better in fact I was getting worse.  I could not figure it out.  I don’t really now how to explain it even now, how bad it was.  I remember looking up from the bottom of my half set of stairs crying because I couldn’t for the life of me figure out how I was going to get up them.  How was I going to get all the way to the top of the stairs in front of me?  Stairs I used to run up easily two at a time while playfully chasing my daughter.  I could not make sense of it in my brain.  It wasn’t the pain, it wasn’t the fatigue, it was something I had never experienced before.  I simply could not make my brain tell me how to physically get up the stairs.  Sadly the stairs are just one small part of a day.  My entire day felt like that suddenly.  Everything seemed impossible.  My brain didn’t know how to tell me to do what I used to do.

Each and every task seemed to impossible.  Getting dressed seems simple enough right?  You pull a pair of pants out of the closet and put them on, one leg at a time?  But I could not figure it out.  I would stand in front of the closet staring at my clothes not knowing what to do.  “Now what?” I’d actually think to myself.  Then there is the fatigue.  Fatigue is not tired.  They are completely different.  Tired you can fix with a nap.  Fatigue is all the way in to your bones.  Fatigue is exhaustion that runs so deep that it makes getting up from your chair feel impossible.  It’s knowing that to get up from your chair and move into the next room will actually require you taking a rest, a break so to speak, between the two rooms.  Fatigue is taking a shower and knowing that you are not capable of drying your hair because the shower itself took every ounce of your energy.  It’s knowing that after a shower you have to go right back to bed with wet hair because of the exhaustion caused by taking a shower.

During this nightmare of course I made an appointment to see my family Doctor.  He ran a bunch of blood tests and told me there was nothing wrong with me.  He asked if perhaps it was depression and knowing my personal history he prescribed me antidepressants.   My personal history which will be another post involved 10 years of marriage to a drug addict, my child’s biological Father.  I had to escape that and then watch my child be neglected by him for years while I fought for custody and ultimately her best interests and care.  There is a belief that auto immune disease(s) are or can be, brought on by extreme trauma.  That the brain can only fight for so long before the body begins to shut down on the brain’s behalf.  So I didn’t fight my Doctor on his depression theory, while I was happy in my new life with my daughter and my husband, perhaps the past had caught up to me.  Perhaps the abuse finally took its toll.

I think the hardest part about this journey were the odd episodes, the random strange things that happen to the body while under the influence of Lupus.  As examples in case they’ve happened to you, once I was sitting at the nail salon and in the middle of my appointment I couldn’t feel my arms.  Everything went numb.  I was suddenly freezing cold and I started to shake.  I literally got up and left without talking to the poor lady doing my nails.  I just said “I have to leave” and I left.  Thankfully I am a regular at the salon and she was more concerned for me than upset when I just up and left.  I called my mom who was an intensive care nurse.  She picked me up, took me home and sat with me as I shook.  She too was at a loss as to what was happening.  Another episode was terribly embarrassing.  It is hard for me to share this one but I think it’s important that we share these stories amongst us survivors of Lupus.  I was sitting alone at my desk one afternoon in the office.  I became confused and suddenly I didn’t know where I was or what was going on.  All I knew was that I had to go to the bathroom.  For a split second I decided to go right where I was on my chair.  Thankfully I realized quickly what was happening and I didn’t have an accident but I then knew something was really wrong.  I had my husband  pick me up from work because there was no way I could drive after being so confused I was going to go to the bathroom on my chair while fully clothed.

I went back to the Doctor and this time he sent me to see a neurologist, he suspected maybe MS.  The neurologist sent me for test after test to rule out a number of things.   After an MRI he decided I needed a spinal tap to rule out MS.  He did tell me after meeting me the first time that he suspected a connective tissue disease and thought I should be seeing a rheumatologist.  While I waited for my neurology results I asked my GP for a referral to a rheumatologist.  And I waited, in pain, soaked in confusion in fear, I waited.  I could not enjoy my family holidays because the noise of the children was too much for me to handle.  My niece and nephew were little and therefore very active. Being in the same room with them for an afternoon was so overwhelming that I would cry out in physical pain and be literally sick to my stomach because of the anxiety.  Then I would sleep for days after spending time with them.  They are great kids but not mine to explain to how sick I was and what I could and couldn’t handle.  By this point not only did my daughter already know it, but she was older and much quieter.  It came to a point where I had to wear ear plugs to dampen any outside noise just so that my pain would not be put in overdrive.  Don’t even mention driving in the car or sitting in the sun. For some reason the car made me very sick and the sun, furious.  I loved the sun, I love the sun still but then, when I first got sick the sunlight would enrage me.  I didn’t know why then, and it seems so silly but I felt like the sun was purposely causing me pain and hurting my eyes.  It became suddenly so much brighter that I felt like it was on purpose, just to cause me pain.  My poor husband thought I had lost my mind.  I now know that is  being photosensitive which is inherent to lupus patients.

I kept a detailed list of symptoms in an app on my phone that I called my pain diary.  It was wonderful as I could upload pictures of my symptoms.  Symptoms like the rash (which I now know is the mylar rash).  The sores in my mouth.  The peeling skin on my fingers.  The purple finger tips.  I recorded the muscle spasms that crippled my feet so badly that they were almost unrecognizable as feet.  I could record the numbness in my arms.  Track the ups and downs of the constant fever.  I could make notes on the pain behind my eyes that I now know to be cluster headaches and/or the kaleidoscope looking things known as ocular migraines.  I could make notes about the swelling in my face and hands.  My face would swell up so badly that it was difficult to tell who I was sometimes.  And of course the joint pain.  The burning fiery pain all over my body.  I had somewhere to note that it felt like somebody had lit a match and set fire to my muscles and how walking (aka simply moving) was (and still is some days) like trying to walk through peanut butter.  Everything had dates, times and severity of the symptom.  That part of this was great.  My happy little OCD driven app that kept track of the madness of Lupus.  The app kept it all organized and I could print it all out and bring it to my doctor’s appointments with me.  It really was a lifesaver because of the brain fog I had a hard time remembering anything to tell the doctor.

I brought my print outs with me to see the rheumatologist.  I was so excited.  Finally someone was going to help me, help me get back to normal.  This was it.  I was going to get back to work, back to my daughter, my husband, and my life.  My husband and I arrived a little early so we went and had coffee together while we waited.  We talked about all the things we could do when I was finally myself again.  The list had begun to grow.  After waiting for 45 minutes (and months upon months) the doctor came and said the following to me;

“Your blood work is normal.  Nothing is wrong with you.  Nice to meet you”.

Are you kidding me?  She started to walk out of the room and without thinking of my pain I jumped up and cried out, “WAIT, I am sick, I need your help!”  I got her attention.  She came back in the room and I handed her my pain dairy and said, “please look”.  Looking it over she said, “Ok, can you touch the floor?”  Touch the floor I thought to myself, “who can’t?”  She saw my confusion and said, “Can you bend over and touch the floor?”  I explained that I could because I was always very flexible and that the only thing keeping me out of a wheelchair was beginner level restorative therapeutic yoga classes I had taken up so as to not aggravate the pain further but keep me mobile.  I bent over and easily laid my palms on the floor and she announced, “that’s it, you have hyper mobility in your joints.  Just don’t bend so much and you won’t have so much pain”.  So I asked about all the pictures, the rashes, the sores, the purple fingers etc. and she said, “Yes, I’m not sure about that, but your blood work is fine.  Nice meeting you” she said, and left.  I was CRUSHED!!!  She crushed my entire soul.  I knew something bigger was going on but my voice wasn’t being heard.  It was as frustrating as the disease itself.  I cried the entire way home.  That was it, it was over.  “What was I going to do now”, I thought to myself through the tears.  “If there’s nothing wrong with me physically then I have indeed lost my mind”, was all I could think.  I started to tell myself I was faking it, I was a liar because maybe my brain just told my body I needed a break.

In January 2014 my husband got really sick.  I will share more about that in another post but I was forced to fight through this illness and be there, present, at my family’s side no matter my pain.  Suddenly I was okay.  By the time my husband was back on his feet I was back at work, on a firm set schedule, and even working out.  That was it, my illness was gone I thought, it had to be right?  WRONG.  So very wrong.  Wrong on every level possible.  I know understand that with the influx of cortisol, the high level of stress (again) on my system, reduced all my inflammation and I felt great. IT’s amazing to me what your body is capable of. That fight or flight response that is imbedded deep within you, is really remarkable. My husband came home and that was the end of that, I crashed, I hit the proverbial wall.  Within days of him coming home I was sleeping all the time.  Out of a 24 hour day, I would be asleep 20 hours of it.  I basically woke up to eat.  The nanny looked after my daughter, my husband and our house, and I slept.  It was all I could do.  I thought I knew fatigue and exhaustion.  I hadn’t even touched upon it.  And now the pain was so unbearable I could hardly move without crying.

Months later I went back to my GP, yet again.  He then decided I wasn’t just depressed but now I had late onset Post Traumatic Stress Disorder, “PTSD”.  He gave me a referral form for a 60 day stay at a private mental health hospital in the town where I live.  It’s a great facility.  People from all over the world go there.  And now I was going I guess.  I called and got myself put on their waiting list for a bed.  But in the back of my mind I kept thinking that there was more to this and therefore I wondered if this really was the answer.  I asked to try another rheumatologist while I waited for a bed.

At this point I was 1 1/2 years into this journey, still no further ahead and only getting worse.  I was sent to another rheumatologist and this one FINALLY listened.  She wasn’t 100% sure what was wrong but she knew something was very wrong.  She brought in an immunologist colleague to collaborate.  After a bunch of testing, and back and forth between the two Doctors there it was.  Lupus.

Yayyyyyyyy!

Wait what?  I was SO happy and so relieved that there was finally an answer. I wasn’t just crazy (no offence to crazy).  I wasn’t “just getting older”.  I wasn’t just “too bendy”.  I wasn’t depressed.  I had a physical illness.  And that meant I could be treated right?  Now that I know what it is I can do something about it.  What a relief!  But why the hell did this take so damn long?  I know that the immunologist told me that I was a special case.   Apparently I was difficult to diagnose for a number of reasons.  But why were they the only ones to listen?  The neurologist had said almost 2 years prior that it seemed connective tissue related.  So why with that thought in hand, with that recommendation, why was there not more investigation done right away?  Why did I have to suffer for so long?  Why was I made to feel like I didn’t know my own body?

DIAGNOSIS

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16 thoughts on “The LONG frustrating, heartbreaking, road to a diagnosis

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      1. Hi Karen. Grrrr it did this yesterday with someone trying to comment. Really odd …. Let me look see if i can fix it. Is it the comments on this post or general comments x

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    1. But I would say to keep asking questions, have you looked at the My Pain Diary app? It’s great you can load all your symptoms by day with pictures of any rashes or mouth sores or whatever, it really helps the Drs see patterns. The other thing, is I follow a strict AIP diet, get lots of sleep, see my chiropractor and massage therapist regularly, workout regularly (ya sounds crazy right! I have a post coming out tonight or tomorrow, that talks about my road back and explains why working out has been so awesome for me), take my meds, vitamin D, and probiotics. I use a naturopathic meets western medicine approach and have found it very successful. And if your dr isn’t listening ask to see another dr for a second opinion, that’s what I did, just kept going until somebody listened to me. Hope that helps a little! K.

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      1. You’ll be totally fine with the celiac on it, there’s no glutens, no grains at all in fact, the vegetarian piece would be tricky, vegetarians generally substitute with soy and pea proteins both of which are against the theories learned by the AIP in that soy is a hormone disruptor and peas are legumes which are have lectins, a lot of people, especially those with auto immune issues are sensitive to lectins, anyway I could go on and on, have a look at the paleo approach by Dr Sara Ballantyn it is very informative

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    2. My main symptoms where fatigue (extreme deep to my bones fatigue, I could walk from the living room to the kitchen and need to lay on the floor in the kitchen for a rest) joint pain, mouth sores, my skin would peel off from my cuticles (not like hang nails more like how a banana peels) rashes, joint pain, muscle pain, almost as though someone had lit my muscles on fire and they just burned away non stop, bowl trouble,swelling in my face and hands, anxiety, frustration with noise any noise, weight gain, confusion, I loose my words a lot so I’m not comfortable in social situations anymore, I think that’s most of it, I hope that helps

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