My favourite things

Things I’ve decided I can’t live without….

I can live without anything really, we call can, but why the heck would I want to is the question.

The challenge with having Lupus, beyond the obvious, are the quirky symptoms that come out of nowhere and catch you totally off guard.  Everyday feels like you are in a different body.

I hate to say this because it sounds so defeating but there will probably never again be a day in my life free of pain or discomfort.  Of course there will be much better days than others, but I will never be the same as I once was.

Because of the negative affects of Lupus on my mental wellbeing I need to take self care, to a whole new level.  This is my list of things that make me happy, that bring me peace of mind, things that make the bad days seem not as bad.

“These are a few of my favourite things…” *sing along with me*

 

 

 

  • I would of course start with my husband and beautiful daughter but they aren’t fans of my calling them “things”.  Neither do my dogs but my home isn’t a home with out dogs.
  • Water, beach, pool, lake, river, I need to spend time near water
  • Large almost body length heating pad
  • Contoured bamboo memory foam pillow
  • My Vitamix Blender.  Smoothies are my go to easy, anti inflammatory meal or snack http://www.vitamix.ca
  • Weightlifting.  I know you find this one hard to swallow but the greater my physical strength is the greater my mental fortitude is.  Which is needed to live with Lupus.
  • Hand made ceramic mugs
  • Milk frother, homemade almond milk lattes anyone?
  • Loose leaf organic rooibus and green tea
  • Kombucha.  My favourites so far are Rise and Live, Live is made organically in my hometown of Guelph, Ontario.  I love to shop locally supporting my community
  • Books (see my favourite book list, coming soon)
  • Himalayan salt lamp
  • Essential oil scented candles
  • Essential oil diffuser for both the home and car 
  • Chiropractic and massage treatments
  • Foam roller and lacrosse ball for the same rolling therapy
  • Yoga mat for yoga and/or daily stretching and meditation
  • Tarte – false lashes.  This is such a simple way to go makeup free and still look a little more “done up” than usual.
  • Tarte – lash paint

 

GETTING MY LIFE BACK…part 1

Weight should not matter.  How you feel should be what matters and only what matters.  If you feel good, physically and mentally, then your weight should not matter.

Everyday I try to teach myself that I am not defined by my weight.  Admittedly and embarrassingly so, my weight is directly tied to my self-esteem.  But I am working on that.  And that, is a whole other post for another day.

The picture on the left is what I call “the normal me”.  It was taken in my favourite place in the world, Hawaii.  Funnily enough, by all rights that Hawaiian pineapple should have been inexpensive right?  That pineapple right there was more expensive that any pineapple I’ve had in Canada.  Hence the holding it like an Oscar.

The middle picture was taken not long after I was diagnosed in the winter of 2016 back in my favourite place.  You will note the smile is not quite as big as it is in the picture on the left.  I wasn’t exactly happy as I was defining myself as being fat and I’d just been diagnosed with Lupus.  I figured life as I knew it was all but over.  If you’ve read my blog, this was the trip with the spiders and when I realized the extent of the anxiety that comes with Lupus.

The right was taken today.  Do you see those abs?  I cannot tell you how proud I am of those.  For someone with Lupus muscle tone is hard to come by but key in my mind to surviving Lupus.

You can clearly see my ups an downs in weight.  I am still 20 pounds heavier than I was in the first picture but I am significantly stronger than I was in the middle picture.

When I started back with weight training last year I could not do a simple body weight squat.  Three reps of them would fry my entire nervous system and I would have to sleep for 2-3 days.

My coach and I have gone through a lot of trial and error in learning what works for my body.  I have had to learn from scratch how to train, how to exercise, a body with Lupus.  He actually had me start by walking the length of the gym simply holding a 5lb weight.  He calls it the suitcase carry.  Trust me, I reacted the same as you are.  “This is stupid and beneath my capabilities.  I used to be able to….fill in the blank”.  I stuck with it because he asked me only one question, “How is what you know working for you now?”  Followed by, “If it is working well, then you don’t need me right?”  UGH!  FINE!  I will listen but only with one ear!

After many frank discussions (which I needed as I am a bit (or a whole lot) stubborn).  I was forced to place my ego on the shelf and do what he asked.  For the record, I am sure he thought how I shelved my ego was done wrong too!

For interpretive sake, consider the definition of “frank” to be equal to, “argumentative”.

I spent the first 6 months progressing VERY slowly thus challenging my mental state and every ounce of patience I had.  There was no change in my weight, or measurements, the gains in strength were VERY slow to come.  The capital letters on VERY as to ensure you understand how much patience I had to muster here.  I mean, it was a lot of patience.

On my bad days, the days Lupus won, I had to cancel training sessions.  But he hung in there.  He believed in me.  He cheered me on.  He made me understand that it was ok to not feel well one day because tomorrow was another day.  And tomorrow we would try again.  There was more than just physical things learned in these lessons.  I learned how to be kinder to myself and my body.

Suddenly I wasn’t ashamed of what I could no longer do.  I never felt judged for how slow things were going.  I had a lot of coaches in my life.  But after falling ill and after explaining in Lupus in depth. They continued to question and challenge me about my eating habits, if after 4 weeks my weight wasn’t significantly changed.  Obviously I had to be cheating on my diet and was not willing to admit it.  Looking back I cannot believe the shame tied to those training sessions, to those coaches.  And I bought into it hook, line, and sinker.

If you are training with one of these trainers that make you feel ashamed then I need you to do something for me.  Dump that idiot!  They are saying these things because they don’t know what to do.  All they know is if you work out hard enough and barely eat then you should lose weight.  Or calories in and calories out = weight loss, it is that simple right? Wrong. They simply don’t know how a lupus body works, and/or don’t know anything about your body.  They know that one thing only, work out, eat less, lose weight.  If that doesn’t work, they are stumped.  Lose ’em!

A good coach, my coach, kept telling me it was going to be ok and that I would get to where I need to be in time.  He simply asked me to stick it out.  He reminded me over and over again that I was worth fighting for even if it was just a tiny bit a day, I was worth it.  There were many times that I literally said, “Screw it, I’m out, this isn’t working”.   Ben (my coach), would ask me, “It isn’t working? Don’t you feel better?  Aren’t you getting stronger?  Haven’t you been sleeping better?  Haven’t you been able to give up those 2 naps a day that your body forced you to have?  Aren’t you now able to wake up, shower and dry your hair all in the same day?”

The answer to all of it was “YES” of course but there was one thing I couldn’t shake.  One nagging thing that I couldn’t see past.  My weight.  I wasn’t losing weight  The scale was torturing me.  It mocked me every single day.  With the patience equivalency to 10 kindergarten teachers he would say again, “But does that matter when you aren’t bed ridden anymore?”  Unlike me (see above) he wasn’t focused on me as a “before and after”.  He wasn’t using me as an advertisement for his services.  He was invested in me as a person.  I know he actually cares about my outcome.  My feelings and my everyday quality of life mattered to him.  He wanted to ensure that all of that got better.  And my bathroom scale oddly enough, he wasn’t a fan of and cared very little about its success in life.

I am now weight training 4-5 days a week.  I no longer have to interrupt my day with two naps.  In fact I don’t need to take even one nap (more often then not). Remember the body weight squat?  I can now squat 110 pounds.  And I can do this for 3 sets of 5-6.  I can dead lift 200 pounds! And can do push ups again.

I take great pride in these accomplishments.  They have filtered through into my everyday life.  Building strength in dead lifting has provided me with the simple grip strength needed to open a jar.  I couldn’t open a jar for my life a year ago.  That stupid walk thingy (suitcase carry) with 5 pounds across the gym.  Remember, I almost quit right there.  Well now I do that with 40 pounds!  That has now given me the ability to bring groceries in from the car without needing to lay down in the foyer for a 30 minute rest before I could put them away.  I can play with my daughter at the park.  Last week, instead of sitting and watching her play I did the monkey bars.  All the way across I might add.  My daughter was delighted, she was really thrilled!  Her face lit up as we both played on the bars.

Lupus almost literally sucked the life out of me.

Training, the right training, with the right coaching, gave it back to me.  

I train now because it makes me happy.  Training makes me feel strong. I no longer train because I hate my body but because my body needs it, it deserves it.  I may not yet love my body, that will come in time, but I no longer want to punish it because it doesn’t work like it used to.  I spend time in the gym because I want to, because I like how it makes me feel.  I like the gym and what it gives me.  I know without training, I would risk my mobility entirely.  I won’t take that risk.

Weight training with my coach and his team of experienced people has given me my life back!  Experience matters when hiring a trainer/coach.  It’s key.  There are coaches everywhere out there at the big gyms, little boutique gyms, home gyms.  You need to meet as many as it takes to find someone you mesh with.  Your personalities must work well together.  I have a bit of a potty mouth, and my coaches find me quite amusing.  They love my colourful word choices.  That’s a good personality match.  It was important to me to find a group of laid back people who would take me as I am.  I had to feel comfortable really quickly with them or why would I go every day?  Will you go work out when you don’t like the gym, the trainer, even the people around you?  I doubt it.  You have to think about all this when you pick a trainer.

Is your trainer actually listening to you? This is not an overnight thing.  The right training does not equal the magic 2 pound weight loss per week you see advertised on TV every day.  How is it possible for every body type out there to magically lose 2 pounds a week guaranteed?  This is not about your, “Three month goal” if you are struggling with something like Lupus.  That does not work for us.  Training with Lupus is a day by day, month by month and year by year experience and it’s for a lifetime.  There are no magic pills, or fad diets to cure what Lupus can do to our bodies.  Of course our Lupus medication matters as does diet but you know what I mean here.  There is no easy way out.  And for God sakes, there are no ‘one size fits all’ approaches.   That term makes me crazy.  How is it humanly possible for one size to fit all?  It’s not possible, it’s that simple.

You know what they say, “If at first you don’t succeed then try doing what your coach told you to do the first time” .

Damn it!  I hated having to admit that I may not know everything after all!!  This statement only holds true if you have a good coach, it’s imperative that you have someone with education behind them.  A weekend course to get “certified” just won’t cut it especially with bodies that have special requirements to train healthily. Take your time, do the research, ask for references but most of all believe that you are worth that.  You are worth fighting for.  If you’ve forgotten that, if that’s gotten lost in you somewhere then dig deep and spend the time pulling your self-worth back out.

Time passes, that’s a fact, you might as well spend that time passing investing in yourself.

Trainers and coaches, they’re expensive.  What if you cannot afford a coach?  Is there something in life that you can give up that isn’t as important as your overall health and happiness is?  The luxury coffee every morning?  Could you make your own instead?  How about the manicure every two weeks?  Could you do that at home with your daughter perhaps?  What about the dinner at a restaurant you like to do monthly, maybe you make a nice meal at home instead.  I don’t know what you have that you could give up but I highly recommend trying to make this happen.  Give up something that you may enjoy but don’t really need because this is something you may not always enjoy but you REALLY DO NEED!  Perhaps your local YMCA/YWCA, church, community centre, high school has help for you?  Even Social Services?  Perhaps there is a coach in your neighbourhood that has karma classes where they offer a discounted rate or may know how to guide you as to how you can begin on your own.  If you have insurance you may be eligible for some strength coaching through physiotherapy? Don’t give up because of money constraints there has to be an answer.

Fight for yourself, you deserve this!!!!!!

Thank you Lean Strong Fitness – Ben, Austin and Pam! xoxo

http://www.lsfit.ca

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

Tips for travelling with lupus

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As exciting as travelling to new places can be, for me it’s terrifying.   As I will continue to discuss in further posts food, sleep, and stress all matter.  They are all things that accompany travel and are coincidentally the same things that will bring on a lupus flare.  Does that mean it’s better to just stay home? No, of course not. But it will take some planning to stay ahead of the game and be prepared.  I fought this for a long time, because I refused to believe that I was sick.  I wasn’t going to let it change my life.  This disease was going to simply fall in to my regular life and not change anything.  Jokes on me, apparently the disease is stronger than I am in some ways.  I had to make changes to the way I do things.  It’s not as difficult as I thought it would be and it saves me, and therefore my travel companions, so much grief.  Here are just a few things I do when I travel.  I hope they help you.

 

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Food.

I cannot eat airport food and definitely not fast food.  Planning ahead makes my trip so much better. I make fruit leather and banana donuts for my sweets.  I cut up fresh fruit, and veggies that travel well.  I cook chicken breast or thighs and I will even take deli meat if I have to.  I try not to use deli meat as a go to but in a pinch it will work fine.  Water, water and more water.   If flying buy a couple of litres after you get through security.  I don’t tend to buy water in bottles, the thought of the plastic leaching in to my water freaks me out, but for a flight every once in a while it’s not too tragic.  Some places have water stations so I always bring my favourite container just in case.

Sunglasses.

The direct sun gives me migraines and strangely even without the migraine it makes me angry.  I mean really intolerable to be with.  My Dr tells me it’s photosensitivity.  It’s really one of my favourite symptoms.  I mean who doesn’t hate sunshine and all things bright and happy.  UGH.  I love the sun.  So sunglasses are a must.  I have a pair in my purse and my luggage in case a pair gets lost.  I always have them in the car.  I love the sun so much but it bothers my lupus.  I guess the bright side (see what I did there?) is that you cannot go cheap when it comes to photosensitivity from lupus and sunglasses.  “I am sorry husband no, the Dollarama will not work, but those Ray Bans are perfect”.

Sunscreen.

It’s a must.  What’s not a must?  Chemicals.  I use natural sunscreens.  Our skin is the largest organ we have.  If you slather yourself in harsh chemicals you absorb them in to your blood stream at a phenomenally fast rate and it’s one more thing you have to filter out of your system.  That’s just more work for our poor bodies already struggling with lupus.  There is no need to make it work that much harder.

Magnesium.

I travel with Natural Calm magnesium individual packages.  I am neither a Doctor nor a nutritionist, or anything of the like, I am simply stating what works for me.  Natural Calm is a natural anti-stress drink.  After I am seated on the plane, train or automobile and comfy, I ask for hot water and enjoy a package right away to remain as stress free as possible.  I recommend not asking your husband for the hot water as soon as you are settled in and off on your road trip.  It didn’t go over well.  I bring the hot water in my little thermos and toss a package in as soon as we are on the road.  Trust me, he appreciates the calming mood change.

Essential oils.

I love my oils.  I am a doTERRA fan(atic) myself.  I only say fanatic because if you saw my ginormous oil purse I am sure you would think the same thing.  I always bring peppermint, wild orange, breath and serenity with me on the plane.  Put one drop in each hand and mix them by rubbing your hands together and then simply breath them in.  It’s amazing.  I find it incredibly soothing.  You can also place a small drop of (edible grade only please) peppermint on the roof of your mouth. That can help stave off nausea and motion sickness which for me is a problem because of my lupus.  I find it also keeps me calm.  I always bring a small travel diffuser and use it my hotel room at night. aroma-906137_1920

Eye pillow.

When I get the chance to lay down I have a lavender filled eye pillow that I take everywhere with me. I like the gentle weight on my eyes.  It’s soothing and the lavender is calming

Large wrap/cape.

I don’t like being cold but as everyone knows you don’t always have all the room in the world to be taking a sweater on and off.  And my joints can hurt making it even harder.  So I bring my big wrap/cape.  It goes over my shoulders and I can also wrap it around my head to cut out noise.  That can make me feel as though there are fewer people around me.  Occasionally I prefer a quieter space and that isn’t always physically possible but there is no reason that I can’t create the illusion

Meditation.

Any device with guided meditations or calming music works really well for plane or train travel.  I like to pull my wrap over my head and listen to a meditation, breath in my oils, and drink my tea.  All of it calms me right down and helps me focus on relaxing and getting into vacation mode.  It recharges me as usually by the time it’s vacation time, we are often depleted of energy.  So these tips can help whether you leave the house or not.  I know it sounds a little earthy crunchy, tree huggery, and out there, but try it.  I assure you, you won’t believe the difference it makes for your travels or just relaxation time.

Audio books.

My eyes are affected by my lupus in that they get really tired which brings on a migraine.  Reading stresses my eyes especially when I am already hyper sensitive or over stimulated by travelling.  Audio books help me pass the time and allow me to close my eyes and just enjoy the ride.

draw-2103019_1920Colouring.

If your eyes are okay and you want to do something to keep you busy but not stress yourself out, colour.  You would be amazed at how good it feels to get back to your childhood and just colour.  The time passes and you have barely noticed anything around you like crying babies, coughing neighbours, or the feet of the person behind you tapping at your behind.  You can buy adult colouring books (and that includes real adult ones with swear words and everything) or you print pages off line for free.  You could even try Zentangling.  It’s professional doodling.  If you were good at it in that boring meeting, trust me you will become addicted.

Warm comfortable socks.

Slipping out of your shoes after being on your feet in the airport for hours feels great.  But bare feet on the floor of a plane does not.  I love slipping into my “reading socks” they are advertised as.  I bring the comforts of home with me everywhere I can.

Earplugs.

While they don’t block out all noise, they sure do dampen the ambient sounds.  Sometimes we can suffer with irregular sleep patterns because of Lupus so I can need sleep when others are awake.  Planes are no different. Half the plane is asleep, half is wide awake.  The ear plugs help me forget that anyone is there

Medication(s)

I try my best to not take pain medication because it contributes to leaky gut.  Leaky gut is what some believe causes auto immune disease in the fist place.  (More about that big link in another post soon).  While travelling, with that kind of stress on your body, why put yourself through more than you have to?  Bring some pain relief and maybe some anti-nausea medication.  Again, the oils really help me but occasionally I need a little more.

Tea

I bring along my favourite teas. The small comforts of home help anywhere they can.

Kalaya (MUST HAVE!)

This natural pain reliever is a real gem.  I use it on my neck when I travel.  It helps to relieve tension almost instantly.  It’s a natural form of RUB-A535 (another chemical nightmare that I personally wouldn’t touch to my skin).

Heating pad.

If you have the room in your suitcase a heating pad if a great idea incase you do have a flair while away.  It doesn’t take up much room and you will be so thankful to have it if you need it.  If you must, take 2 suitcases.  Then you have room for more fabulous clothes and your must have heating pad.  It’s a win win for everyone.

Room type.

I try to reserve rooms that have a kitchen.  Going back to the importance of food, I do not function well after eating out.  Food has a huge effect on me, especially if there are hidden ingredients that cause a flair.  At least with a kitchen some of my meals can be spot on.  I can at least prepare snacks for the day.  Breakfast can be started off well if I have some control over the ingredients.  If I am really lucky I can make a lunch for myself as well.  The more control I can have over what goes into my body the better for all.

Lacrosse ball.

Look it up, it’s a thing.  For both the sport and sore muscles.  When my muscles tense or knot up from travel I roll on the ball.  Sitting up against a wall (or lay on the floor if you can handle that much pressure) put the ball under you.  Roll back and forth over the tight areas.  Instant relief!  You will feel the fresh blood rush in to that area right away and the pain lifts so quickly.

FUNNY TRAVEL STORY

There is a take away to this little anecdote.

I worry about many things before I travel and one of those worries are bugs?  I HATE bugs. A mild phobia turned into all out irrational terror for me after I became ill.  It seems like all my previous anxieties became compounded with lupus and remember stress (of any kind) can bring on a flare.

On a recent trip to Hawaii we decided to try an AirBnB home.  It was wonderful.  At first. It backed on to what appeared to be a jungle.  There were the most beautiful birds and the snails were the size of my fist (and not a bug, snails are not bugs).  The sounds coming from this glorious place were so enchanting and peaceful.  I was very excited to stay here for a week.

 

My daughter and I hurriedly unpacked and went to put on our bathing suits on to head to the pool.  As I was in the bathroom my daughter shouts, “Mom, Mom, don’t come out!”  As you can imagine I immediately began to panic. “Whats wrong?”, I asked. “Mom, it’s a HUGE spider but it’s ok.  Dad got rid of it”.

Phew, ok.  Being Canadian and from the Province of Ontario, our huge spiders are not terribly huge.  We have daddy-long-leg spiders and they are as big as I have seen.  Thank goodness that’s what I had pictured in my head.  Tragedy averted, we headed to the pool for the afternoon.  Later in the evening I was sitting on the sofa folding laundry and out of the corner of my eye I see this HUGE black spot on the ceiling.  There it was.  The spider.

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This was no daddy-long-legs, this was a small animal!   His body was the size of a Canadian tooney (an American half dollar coin).  And the legs, they spanned 6 inches.  I kid you not. Turns out my husband didn’t get rid of the spider he just chased it behind a bookcase so I didn’t see it!   It took awhile but I finally calmed down and went to take a shower.  When went to the bathroom and threw on the light there was a cockroach staring at me the size of a mouse!

That was it, there was no way I was staying there.  With lupus, comes anxiety.  I already didn’t like bugs before Lupus, after Lupus it became all encompassing terror.  I don’t know the medical reason why but I know that it has been something I have battled since the onset of all my other symptoms.  At this point my anxiety went in to overdrive.  I was standing on the bed at 12am crying like a 3 year old that couldn’t catch their breath.  By 2am and with no signs of me calming down my husband (not very happily) packed up our clothes.  I woke up my daughter who apparently shares none of my bug anxiety for the soundness of her sleep and put her in the car.  In the middle of the dark of night, in a strange foreign place, we travelled the island looking for a hotel for the night.

The point of me sharing this embarassing story is just to let you know that there can be strange symptoms with Lupus.   If you have weird anxieties or unusual fears that are new, or maybe old and now worse, just work with them and do your reasearch.  Not only about the anxieties of course but about where you are travelling to.  Will you be triggered in the travelling or once there?  How about where you stay?  Will it be too crowded, or not enough people and too remote?  Do a little more research than we did and take every single symptom you have seriously in that it can and might impact your trip.  If you need to stay in larger hotels where they look after the farm animals for you and don’t leave it up to your husband who thinks the book shelf is good enough.  Note to all husbands, IT’S NOT!  That one incident, that night, cost us a fortune.  We had to forfeit the week we paid for at the house, and then pay for a hotel for a week.  And it cost me greatly personally.  The stress, guilt and shame brought on a flare up and I couldn’t walk, or even stand for two days.  There I was in a place I love more than anywhere I’ve travelled before, my beloved Hawaii, and I had to stay bed ridden for two days watching TV with the blinds drawn as my husband and daughter played at the beach.  Lesson learned.  I am no longer the adventurous take me backpacking in the wild type of person.  I was before I got sick and in my mind I still am. But at least for now in this new reality I will most likely end up in the middle of the bed bawling without being able to catch my breath if I step too far into the adventure without caution.  Sometimes it just isn’t worth fighting the new me for she can be strong. So for now I will stay with resorts I know and trust in a room with a little kitchenette.

To this day my husband still doesn’t really understand what happened in Hawaii and why my anxiety was so high.  And that’s okay he doesn’t have to.  He respects me, he supports me.  High maitenance?  Perhaps.  Dave and I have had many discussions about that as well but that’s another post for another day.

 

Strawberry “fruit roll ups”

We laugh a lot in our house.  To be honest it’s often laughing at me rather than with me but that’s okay ’cause I have a good time either way.   I like to dance and sing in the kitchen while I prepare healthy snacks for us.  I just recently discovered snap chat (yes I’m a bit behind).  I discovered it because my daughter decided to record my dance session and put it up on Snapchat.  Apparently I was quite the hit (or joke, I’m not sure which) amongst her friends.  Oh well, I had fun, so did she.  And she’s been properly schooled in all things Blondie.

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My teenage daughter has learned that there is a huge difference between the store bought roll ups and ours. She says the store bought ones taste “fake” and she won’t eat them.  Much like she won’t eat “fake” cheese, but that’s a post for another day.

These roll ups are SOOOO easy to make and they help me with sugar cravings.  I also take them to the movies and on car trips when those around me will have sugary treats.  It helps me not feel so hard done by.  Think camping trips and sporting events.  Really anywhere I might find myself with the need for a sugary tasting treat is when you will find me packing this goodness into my bag.

I really don’t have a recipe for this, I just throw it all in and taste as I go.  But the basics are:

  • 4 cups fruit (I use frozen fruit and I prefer strawberries, mango, pineapple or blueberries.  Berries with chunkier seeds can be annoying to work with here)
  • 1 banana (helps get them to the right thickness, so they aren’t too runny)
  • 2 tbsp organic local raw honey
  • 1-2 tsp maca (optional)
  • 2 tbsp (or more) collagen (optional)

I put the fruit in a pot on low heat to thaw.  Once in a blue moon I remember what I am doing and take the fruit out of the freezer earlier and let it thaw on the countertop.  Once thawed in to my favourite kitchen gadget it goes, the Vitamix.  I add the banana, honey and any other items I like.  Blend, and taste.  You can add more honey if you like.  I try to use as little as possible.  Sugars of any kind don’t tend to help my inflammation and joint pain.  Some people tolerate them just fine but sugar tends to make my fingers and wrists quite sore.

When everything is all blended and you are happy with the level of sweetness, pour the fruit mixture on to a dehydrator silicone sheet.  If you don’t have the dehydrator sheet, parchment paper works well.

Set your dehydrator setting to fruit, it usually take about 4-6 hours depending on the thickness of the mixture.

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My daughters favourite part is peeling them off the dehydrator sheet.  Peel them off the silicone, lay the tacky fruit leather on parchment paper and cut in to strips, then roll!

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Enjoy!

Life with lupus/auto immune disease

I was sick of waiting for the light to appear at the end of the tunnel….so I lit that bitch up myself!

This has become my new mantra!  You can’t wait for a miracle to change you or a magic pill to fix you.  You have to work at it a little bit everyday.  Figure out what works best for you!

Life with lupus…hmmmm how to begin?  Well, to put it in words my daughter would use, it sucks!  At first some people feel as though they are losing so much.  So much is being taken away.  Maybe you are scared, sad, angry?  How about all of the above?

Maybe you are like me?  I wasn’t afraid at all because it didn’t really sink in at first.  I hate to admit it but I was almost 2 years down the road before I had to admit to myself life was going to be a little different.  At first it really didn’t bother me because damn it I was going to eat well, exercise and laugh my way through it.  It was going to go away and then I would get on with my life.

If I had a bad day, it was only because I had eaten something that I shouldn’t have.  Or it was because I didn’t get enough rest.  I was stressed out that’s all.  There was always a reason and I blamed myself.  I had done something wrong to cause it.  I would spend the next day trying to analyze everything I did the day before.  This way I could make sure I didn’t do it again and I’d be fine.

I am writing this blog to share the tricks and tips that I have found useful over the last few years that helped me.  I do a lot of planning.  I am constantly making lists because lets face it, we forget everything!  I try to go easy on myself and show myself as much love and kindness as I can.  Finally I try to have as much fun as possible!

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