Chronic Fatigue in Me - There is Hope

I know a lot of my Posts relate to products - I'm helping the little businesses get their name out there.  I know how difficult marketing is from my Crystal's Bird Toys days - word of mouth really DOES get the most repetitive business (or at least that's what I encountered).

This post in about My ongoing 12+ year battle with Chronic Fatigue Syndrome. Something the majority of people just brush off or laugh off.

I can't count the number of mainstream doctors I've seen.  I've seen one homoeopathic "doctor" (she was only a few years into it, but I saw a glimmer of hope with her treatments).  And one Naturopathic Doctor (ND) who really helped me progress beyond Zombie stage 3 years ago.

Every single one of my friends, my in-laws, and the car at lunch have all encountered Systic falling asleep on their couches, on chairs, on the floor, against walls, and probably other random places.

When I stop, I drop. Or at least I used to.

My ND, however, was not cheap. And as great as my employers' benefit plan is, beyond the actual visit fee, Naturopathic remedies are not covered. I could manage this when I ran CBT - but after I closed shop, it became very anxiety driven as to where the extra $200-$300 a month would come from.

So I went from monthly visits to every 3 months, then 4, and finally not at all. I stalled out, my memory began fading again, my constant dizziness returned, and my sleep cycle worsened.

It's not as bad as it was 3 years ago - I can work out daily, and am not a walking zombie. I don't feel I'm as grumpy as I used to be either.

I really do try to stay positive - like unicorns, sparkles, and Jazz Hands!

c/o play.google.com

Not stopping + positive thinking = better frame of mind.

Then my accident in September happened, and my mainstream doctor ignored me yet again (about my pain and injury totally unrelated to CFS), and I ended up in the emergency room two days later.

Husband once again asked his newish family doctor if he would take me on as a patient. Husband likes his doctor - he listens and seems to actually care. For Husband to recommend someone - they MUST be good!

I finally mustered up the energy to fill in the transfer paperwork, and eventually got it to the new doctor's office for the process to begin.

I'm at the point where I expect nothing from mainstream doctors. For my concerns to be brushed under the rug, like my last doctor who suggested warm milk and a boring book before bed.

I'm totally serious.

c/o hypervocal.com

I went to my first appointment the day after the last snowstorm.  I snowshoed part way to be more efficient.  And really, who doesn't want to snowshoe partway across town? It's what Canadians do, eh!

.  My first impression was "Wow!" as the nurse was personable, friendly, and made me giggle.

The nurses at my old office were always abrupt and never smiled - I appreciate that they are busy running a clinic, but making patients feel like more than just a number really goes a long way.

My new doctor's office is just him - no clinic with multiple doctors on the roster (I did have my own set doctor) with a walk in at the end of the day AND It's not an Appletree (which I don't think I ever saw the same doctor at).

I was in the reception room for 1 minute and then brought to a room in the back. I was in the room in the back for another minute before the doctor arrived.

So weird, right?  A doctor on time??

As this was the meet & greet appointment, I went through my history, and my main concern - my CFS.  He asked me questions, spoke about what he might be able to do for me, and set me up to get my blood work completed.

My last doctor didn't have my bloodwork done, and I was with her for at least 7 years.

8 vials of blood and 2 weeks later, I was sitting in his office again.

An action plan is now in motion!  Right then and there he administered my first monthly Vitamin B12 shot. And faxed over 3 prescriptions to the pharmacy.

I'm on a super weekly dose of Vitamin D (1 pill a week 10x the normal weekly amount), monthly Vitamin B12 shots, and Modafinil in the mornings (my keep me awake pills).

He was hesitant about the Modafinil, as he wanted to get me into the Sleep Clinic first - but they don't have any availability until July or August - this is a band aid fix until he can review the results of my sleep test.

I'm also going in to another specialist for my Thyroid this week - it's enlarged with a possible growth on it - the thing that irks me, is I recall at least 2 other doctors in the past years who have mentioned it seems enlarged. And they did nothing.

I honestly feel like crying, because for the first time in 12+ years, I'm not being ignored. There is an action plan in place. I don't feel like a number.

I don't feel like a number.

Wow.

So far, I feel like I can focus so much better, which is great, as I have my Risk Management exam next month and have had troubles really focusing and remembering what I'm studying and learning.

I feel less foggy in my brain.

I feel there is Hope.

I feel the girl pictured below pre-CFS can come to life again.  I also really miss that running shirt - It was so sweet!

So This Happened in September...

So yeah...right after my September 12th post, a bike ride fall I'd had on September 10th started creeping up on me, leading to a doctors visit and two emergency room visits.



Woo.



So no exercise until November 2nd. 



I think my riding season is over too.




Despite my pain and bedridden state for 11 days, my main concern since the beginning of August has been The Fynn.



We found a lump above his left elbow a week before his scheduled annual checkup.

Poor Lumpy

The vet was able to take a sample right then and there, and it was deemed to be cancerous.  But if he was to get one type of Cancer, this is the type of cancer that's the best.



These lumps are removable, and due to its location and size, hadn't yet imploded and entered the bloodstream or any other parts of his body.



All I heard was, "Blah blah blah Cancer, blah blah, surgery" inbetween my tears.



Husband nicknamed him, "Cancer Dog," whereas I move lovingly called him "Lumpy"



Fynn is not the best dog, his vet is a Super Hero each time he visits - yay for anti social, anxiety ridden, ADD weirdo rescue dog.  If he likes you, he loves you.  If you're afraid of him, he doesn't like you.  If you're a stranger, he doesn't like you.



Those who are deemed worthy of his love see a totally different side of The Fynn vs those who haven't gotten the chance to know him.  He can be scary with his scary bark and jumping.



As our private trainer said - he's going to be the best dog he can be, and will never be perfect.



We love him dearly, and he really does try.  Every year he gets more and more snuggly and cuddly and just needs reassurance and love.  He's lucky we're stubborn, and that I'm aware of our surroundings and his limitations.  We have an understanding and bond.



I'll never give up on The Fynn, and help him to ensure he is set up to succeed, not to fail.



So...that being said - him needing to go to the clinic more than once a year was stressful in itself.



Cancer is a scary word. Especially in such a small being.  And looking at the associated costs sucks too.  He just turned 6, so he's only halfway through life and full of enthusiasm and determination.

So he had surgery a few weeks ago.  They removed the entire tumour, and hopefully all of the surrounding cells.



There is a chance that it could grow again if the cells weren't all removed.  Hopefully Dr. L proves his super powers with Fynn once again and we don't see that tumour again.

Home from Surgery - he couldn't lift his head up

Sad puppy

He kept taking his wrap off

His healing hasn't been the quickest due to the area.  I've used gauze, wraps, and kept his muzzle on until he figured out how to lick through the muzzle through the bandage.  We were lucky enough to be able to borrow a Cone of Shame, which is awesome and working.

Silence of the Lambs muzzle - it works!

It's funny watching him try to walk through doors and into walls...he's just darling.

Shame Shame Shame

So as we recovered together the last few weeks (it WAS kind of nice to be able to just lay drugged up with him while being catered to by Husband....I didn't really have any worries or cares once I got the proper medication...), I was glad to be able to ensure Fynn felt loved and taken care of.

Healing together

I love The Fynn.

The Accident - Bye Bye Useful Pick Up Truck!

So, on June 13th, we were on our way home from MEC (aka Westboro) with some new biking gear. We were JUST going to pop into the house to change my shirt as Husband slobbered ice cream over it - The Merry Dairy ice cream to be exact - so we could satisfy our desire for a nice steak dinner.

See - ice cream on my face that drooled onto my shirt right before the accident

Yeah - that didn't quite pan out the way we anticipated.  Two rights and a left away from our house, we were stopped at a red light.  Light turned Green and there were 3 or 4 cars ahead of us, thus, Husband's foot was still on the brake.  I looked at the rearview mirror, and saw this big pick up truck coming towards us, and thought nothing of it.

2 seconds later, all I heard was a crash, and I started screaming for some unknown reason for 1-2 minutes.  Husband was scared, as he had no idea why I was screaming or if I was hurt.

The pick up truck, on a nice sunny day, with no sun in his direction, somehow missed the brake lights on our BRIGHT RED pickup truck, and hit us (0KMH) going about 50-60KMH.

The result? Husband was really confused and sore, my right leg was bruised and swollen, the back of my head hurt like a &#$*%, and I had no idea what had just happened.

I was mixing up my words WAY more than normal, and delayed in my responses to people asking me questions.

I couldn't remember which was my Left or Right (even doing the old make-my-fingers-into-an-L-to-figure-out-which-is-left childhood trick).

An Ambulance arrived quite quickly, as did the hot police officer.  I remember that.

I was the only one injured enough for the ambulance to take in.  They asked me questions, did some tests, and told me I had to go to the hospital.  As we were so close to home, and Husband would have to pay for parking anyhow, I declined, as Ambulances charge $45 for a ride these days, and I could walk (painfully) - I wanted to avoid my leg from stiffening up.

They need Uber ambulances I think.

I signed my Waiver, and saw the aftermath.

Rear windows smashed out

Rear bumper. Poor bumper.

The car in front of us saw the driver not stopping, and had enough time to pull up, thus they only had a minor scratch on their Audi.  They stood with us, and were quite irked at the Truck driver.  None of us really talked to him.  I never did find out if he was looking down, texting, or just zoned out at the time of the accident.  The Audi couple suspect he was texting, as he was looking down as he approached us. Only the police and insurance know (and the guy) for sure.

We gave our statements (well, Husband more than me, as he was driving and coherent), and Husband and I walked away.  The truck was undriveable.

Little did we know at the time, the whole front end was shot (we were able to change gears without the clutch - not good in a Standard vehicle), it was buckled at the front, passenger side was buckled out all the way (like at a 45 degree angle in the middle), the truck bed pushed into the back of where we were sitting (hence smashed glass, and injuries)....and the repair shop stopped counting repairs without even taking into consideration the internal damages.  Little Truck was a write off :(

This isn't what was supposed to happen - Truck is paid off this month (July), and we were supposed to use its payments towards replacing the 2003 Mazda Protege (my car) which has about 285,000KM on it.  Great car...just that was the one that required replacement!  When it dies, we'll figure out what to do - will we just stay with the new vehicle, or replace the car too?  Maybe if I get a super grand raise at work or something (ha ha) that could compensate for a second car payment (ha ha).

Sad to say goodbye to trucky at the repair shop. Notice the glass shards in back of bed.

Back to my injuries.  We spent 3 hours in the emergency room from beginning to leaving the hospital.  It was not too bad - we even ran into one of Husband's old friends who had moved back to Ottawa.  Small world!

The Doctor was actually one of the best doctors I've seen in years, besides my Naturopathic MD.  She was funny, asked questions, and had great bedside manner.  It made a frustrating and scary experience better.

I was diagnosed with a Mild Concussion and told to basically sit in the dark and rest for the next 7-10 days.

I could watch my tv series on Netflix for short periods of time during the day (in the dark living room), stayed off my phone and computer for the most part, and finally had a coherent conversation with Husband 5 days after the accident happened.  My brain literally hurt.  If I exerted myself, it pounded to let me know, "slow down".  The best way to describe it is a numb throbbing.

I couldn't multi-task until the following Thursday (so almost 2 weeks after the accident) - I'm all about the multi tasking, so this was weird to NOT do it.

I didn't bike until 2 weeks after the accident (a lowly 30km), and we turned around when I started feeling weird.  I didn't work out with Shaun T for the first time until this past Wednesday, as I couldn't - I got way too confused and my head throbbed.

I credit the fact that I only had minor pain in my shoulders, back, and neck from the impact to actually being fit.  I literally have been strengthening my shoulders, neck, and back with working out almost daily since the end of October 2014.  I am SO surprised my injuries weren't worse than they were.  Who knew being fit could also help you recover from or have reduced injuries from an accident?

I'm pretty much back to normal now, but it shows you - every choice you make, place you go...it can change your plans in a flash.  Take each moment and live it.  Don't live with regrets and "I'll change it later" attitude.  You have to choose what you do today - because life's nails in the road come without notice.

Do you really want to look back and not be happy with your entire life?

I think not.

I am thankful we only lost a vehicle, 3 weeks of my "normal" life, and some financial insecurity.  A week after our accident, a friend's sister was in a car accident where she was airlifted to the hospital, was in ICU, and has months of recovery ahead of her.  I also lost a human Ridgeback acquaintance of mine during this time - not much older than we are.  That's terrifying.

Live in the (logical) now.

The Naturopathic Doctor Visit

I know there is a LOT of controversy between seeing an Medical Practitioner vs a Naturopathic Doctor.  

I spent 10 years going from Mainstream Doctor to Mainstream Doctor.

I was told to:

- Drink Milk

- Read a boring book

- Get more sleep

- It's all in your head

- Here's some anti-depressants 

- Take another sleep test

- There's nothing wrong with you

...and so on.

I've been to 4 Sleep Clinics (one in the day), the Cardiopulmonary Specialist, Walk In Clincs, General Practitioners, Respiratory Therapists and more. 

I never felt comfortable enough or could remember enough of my symptoms in the 5 minutes mainstream doctors seem to have for a patient before they just stop listening.

I was on "keep me awake" pills for about 6 months. Then they stopped working, and I started falling asleep everywhere all over again.  What did the doctor do? Prescribed me the EXACT SAME PILL after it had been rejected by my body as a solution after 4 months! 

I met my first Homeopathic Healer then (she wasn't an ND - Naturopathic Doctor who requires the same extensive education as an MD), and saw my first glimpse of not feeling like crap. Then I moved back to Ottawa, and just floated by until I hit rock bottom again.

Chronic Fatigue Syndrome - your worst flu symptoms x 10.  

Where you fall asleep on your friend's couches on a regular basis in the middle of the day and can't remember your words halfway through a sentence (so embarrassing).  Heck  - I fell asleep last weekend on a friend's couch at about 8pm. I just couldn't keep my eyes open.  I woke up 2 hours later, drove home, and went right back to bed. 

I was sleeping because I couldn't stay awake...Husband had enough booze.

There's lots of pictures like the one above. Systic sleeping.

Me when I used the nickname Systic. Sweet 16.

Anyhow. I met my current ND about 2.5 years ago.  She specializes in treating Lyme disease and Mould induced illnesses (aka me).  Husband and I call her my Voo Doo Hoo Doo Doctor.  She's awesome, but whatever she does is weird. And it is slowly working (I tried to go cold turkey last summer, and ended up getting sick and regressed rapidly).

I have gone from walking Zombie to almost normal. Well, as normal as I can be (if you know me, you know I'll never be normal - ha ha).

Today I saw her for the first time in 4 months, as she felt I could go that long between visits.  It was every 1 or 2 months prior to that, so progress is being made!

The appointment starts with discussing how I'm feeling, what symptoms are quite evident, and my diet - food plays a big factor in that whole staying healthy thing.

I need more Protein (chicken, ground beef, etc.) at lunch time to avoid that lunch time slump I have between 1-3 pm. 

I lay on the examination table, put my left arm above my head on the pillow there, and she checks my heart rate and other things.  

I close my eyes, as it's too weird to keep them opened.

She has these plastic letters with different metal abbreviations on them and lightly throws them at my side - weird, right? I've never asked her why...it's JUST what she does.  Apparently where they land tells her what is stuck or elevated in my system, so she can formulate the proper supplements.

Then she pops a few homeopathic ball thingies in my mouth, and uses this laser thing on my ear.  This is to cleanse the crap out of my lymph nodes.  I LOVE this.  It feels like an Ear Orgasm running through my head.  That's the only way I can describe it. 

Then she sticks an acupuncture needle in my ear, as the laser isn't working well enough.  This just sends tingles throughout my body.  I don't know if I'd prefer this over massages, as I LOVE me my massage time!  It just feels awesome. 

She usually uses this cleansing time to grab whatever supplements she feels will help me.

I leave with a more effective Probiotic Powder, and a bottle of drops to help with my Cognitive Function as I'm having a lot of troubles remembering my words and keeping focused.  

Yeah. You know what you get covered by your Benefits for Medical Prescriptions?  Have you ever looked at how much you're saving?  For these two bottles of Supplements, I'm paying your prescription fees out of pocket, as Medical Benefits don't see Naturopathic Medicine as something that should be covered other than the visit itself (which I have to Claim for). 

It's NOT cheap to go this route, and it really sucks that my visits are clumped under the same benefits group as Chiropractor and Masseuse.  I gave up my Chiropractor this year so I can get massages, but probably won't get another massage until August because we just paid out-of-pocket for two supplements.

And she knows I'm on a budget, and would prescribe more, but it's not possible, and she's cool with that. 

I do still use a General Practitioner for one of my prescriptions (she checks my lymph nodes every time), and I totally believe in Vaccinating your kids (we shouldn't have outbreaks of diseases that were eradicated decades ago), and when I get Cancer (it runs on both sides of the family) I'll go mainstream and pray that I won't be ignored yet again.

It still terrifies me that I've had to fight to make no headway in 10 years, but have made so much progress in the last 2. Will Mainstream medicine be there for me and listen when it's something more life threatening?