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Hey Everyone, welcome to my blog. Where the goal is to share how my life has been, and continues to be, impacted as a result of chronic Lyme disease.

Thursday, March 30, 2017

Update

This past week I met with a new specialist in Mississauga.

Leading up to it I was quite anxious.  I have grown tired of Doctors not knowing how to really help me, and so I couldn't help but worry this time around.   The night before I didn't really sleep.  

Bright and early Tuesday morning we (my dad and I) set out for Mississauga.  I felt fairly sick a majority of the way, but thankfully the trip wasn't too long, and I could take lots of breaks.                           
The appointment mainly consisted of the doctor getting to know me and all of my health history.  While I was sharing, he commented that even some of the things I had as a kid were signs of Lyme.  I don't think we'll ever be able to pin point when I got it...but the important part is, I know I have it, and we have to treat it.   Some people wonder why it only started getting really bad over the past year. Well the thing is, people can have the bacteria in their body for years without it making a huge impact.  And that was the case for me...it would try to surface often (in all the times I did get sick), but my body was still strong enough to resist it.   However, when I had a concussion last Spring my health, immunity, and strength all went down....and this is when the Lyme really took off. 

During the appointment they also did some bioresonance testing to determine multiple things.  From this we discovered I have a very strong reaction to mold, I've got lots of parasites, and 4 co-infections.   

He gave me some tips going forward.  1. Get a really good water filtration system (vital for maintaining good health).  2.  Do my best to clean my environment of mold (the Lyme treatment won't be properly effective if I am still dealing with mold).  3. I have to make some dietary changes as well.

As we were walking out of his office towards the receptionist's desk I started feeling really light headed and weak.  Apparently one of the ladies in the office noticed (she said I looked pale and green), and got me to sit down and then eat and drink something.   One of the biggest downsides to being nauseous so often, is that you don't always realize when you haven't eaten for nearly an entire day until things like this happen.  

I've booked another appointment next week where they will finish testing, and will finish explaining the whole treatment process (it's impossible to fit it all in in the first visit).   At that visit they will also start me on something they call a drainage.  Which is a 10 day process to break down the shell/membrane surrounding the Lyme bacteria.  Because only once it is expose can they treat it.  The downside of it being exposed is that it will effect my brain....but they assured me that they would give me something so that I wouldn't feel like I was going crazy....yikes.

I spent that night in Burlington (with grandparents) so I didn't have to drive all the way home right away.  But we made it home the next morning.  

The whole trip exhausted and overwhelmed me.  When I got home I had about zero of my strength left, so I just curled up in a ball and cried. I spent the rest of the day trying to let everything just sink in; and also unwind.   But one of the problems with Lyme (one that I really struggle with) is that there is lots of bacteria in your brain, and so sometimes emotions and thoughts can't be controlled.  I did, however, get some relief later in the evening.    

This morning started off relatively ok, but I spent most of the day in bed.  And then in the afternoon I went to my chiropractor.  My neck was pretty horrible (as usual) so he spent a majority of the time trying to work through it.  I got home and went right back to bed (which is where I spend almost 90% of my time now).  I haven't really felt relief yet.  And when my neck is as sore as it is right now, there is often quite a bit of pressure and pain in my head.  My joints and back are also not doing so well at this point.  Hopefully I will be able to get some sleep soon.  It may help take some of the edge off.


The battle continues.

Tuesday, March 21, 2017

Realities

During the past few weeks a lot has happened.  

I went on a family trip last week.  It was eye opening for me.  And I began to really see what living with Lyme looks like.  
Travelling is really hard on my body, and I have to take things slow.    Make more stops, use earplugs, sunglasses, and whatever I can to block stimulants out.  By the second night my body had had enough and I had to crawl/hunch rather than walk...not ideal.  By the time we arrived at our destination (15+ hours of driving later), I crashed, and didn't really get up until two days later so I could enjoy a few hours on the beach.  Even that tired me out.  The next day we planned to start the trip home.  I'll admit, I was terrified.  I didn't want to put my body through all that extra pain again.  I ended up flying most of the way home.  It increased the pressure in my head, but overall it was a much quicker way of getting home, so I'm glad I chose it.

Lot's of people have been asking whether I enjoyed the trip or not.  I have a hard time answering that.  I will say this though, I did enjoy seeing my family getting to relax and get a break from the busyness of their lives.   

Over the past few weeks my joints have increasingly been getting worse.  At first it seemed more gradual, but by this past Sunday I had a really hard time walking (especially noticeable when walking up stairs), and, that evening, out of the blue my wrist started bruising and swelling for no apparent reason.  Since then things have gotten worse. I spent all of Monday in bed, and this morning I woke up and couldn't move my right knee.  My elbows, wrists, left knee, ankles, and neck joints are really not giving me an easy time either.  I had physio this morning.  Even my physiotherapist is pretty surprised at how fast things are changing.  She's been mainly focusing on working in my neck and head until this point, but hopefully now she can adjust her treatments and work a little bit more on the rest of me too.  

My back is getting worse too.  And sleep continues to be a really big challenge.

It's increasingly getting harder to get out.  I've been in bed most of the time for months now.  But lately it's gotten to the point where, the few times I do get out (only for my appoints and a church services here and there), I try things like wearing makeup and putting on smiles to cover how I actually feel.  Sometimes it's easier that way.  I so badly want to be able to just continue on with life as if nothing happened.  But I can't.  And now each time I want to go out I have to be willing to face the reality that I will have to pay for it later with increased symptoms.  

I apologize that this has been a pretty negative post, but this is the reality of my life at this point.  I struggle to understand why my plans, dreams, and jobs have been put on hold.  God is really putting me to the test.  And I pray I have the strength to keep fighting.

I was encouraged, and will close with the following words:

"God will take care of us.  As the old hymn says: “No matter what may be the test, God will take care of you; Lean, weary one upon His breast, God will take care of you.” (God Will Take Care of You, Civilla D. Martin, 1904).  I don't know exactly how that care will look.  But I know that, as the scripture promises, if we put God's commandments -- love God, love your neighbor as you love yourself -- first, our needs will be provided for, and we will be able to offer this sanctuary, this place of rest, to others for years to come."

Monday, March 13, 2017

It's all adding up now


When my Doctor first mentioned that he suspected I had Lyme disease back in January I will admit, I was surprised.  He did a few tests right away and then he sent me home with a requisition for some blood work, and told me to come back in 5 weeks to talk further about it.

As I started to wrap my head around it, it began to all add up.  This could be why I wasn’t responding well to the physiotherapy and chiropractic treatments for my concussions.  This could be why my tonsils and lymph nodes were often swollen.  This could be why my neck was ALWAYS stiff and sore.  This could be why I have so little energy.  This could be why I experience all the shaking.  This could explain many of the the random trips to the hospital over the past few years with little or no answers.  This could be why….etc etc.
So by the time I did get a diagnosis I wasn’t shocked.
But I was (and am) overwhelmed by what lies ahead.  In Ontario and Quebec it is difficult to access experienced Doctors…due to controversy surrounding the treatment.  One of the doctors I may start seeing in Mississauga actually gave up his medical license after a lengthy battle to keep it…all because of his involvement in the treatment of Lyme.  He now practices under a homeopathic license, and continues to help people who so desperately need it.  The other Doctor I may be working with lives in upstate New York.  And she formerly worked in between Ottawa-Montreal, but she was under the pressure of losing her license and so she took her practice across the border.
Currently I am awaiting consultations with both of the Doctors mentioned above.  And I’ve begun working on boosting my immunity so I will be better equipped to face the treatment,  my current specialist has been very helpful in getting this going.
This was in no way an easy diagnosis, but we now have something more to work with.