To be honest, this has been a VERY difficult year emotionally for me. I have been fighting to beat this disease so I could get back to being a wife, a mom and to the work of our ministry with All Access.
I spent the first six months of this year FIGHTING to keep my ministry active and alive and the second six months laying it down and realizing my journey to heal had to remain number 1. To be honest... I was DEVASTED!!! I did not want to do this "fighting Lyme Disease thing" anymore. I wanted my life back and it hurt so much...I did not want to talk about it or blog about it.
I do regret that now...I wish I had the courage to share that pain during the process but I am praying I have more strength and courage in 2011 to share the HIGHS and LOWS with you all. So I do want to start by taking a moment to go back and record my 2010 year...not so much the emotional journey (I will write more of that in some separate blogs) but I want to remember the "physical" process and hope it will encourage some other Lymies to continue the FIGHT and know your NOT alone!!! I did write 2 short blogs during 2010 but never posted them to my blog (no idea why??). Rather than delete them I decided to go ahead and post them with date they were written, so they are just below this email if you care to read :)
So how fast can I scoop 2010...hmmm...
WINTER 2010: In December 2009 I was hit with another MAJOR set back. What I thought was just more Lyme pain turned out to be a severely bulged disc in my back. This was a reoccurring issue from 2002. It took me over 2 years to rehab the disc without surgery from 2002-2004. This time, it was worse...even my amazing Dr that rehabbed me last time and hates surgery said...SURGERY!!! Of course this was not good news with the Lyme recovery. My specialist wanted me to TRY and rehab while I worked hard on researching the best surgery options...ps...there are really no good options as a Lyme patient!!
Rehab included: back brace, traction 2 to 3 times a week, no sitting, no bending, no lifting, mostly laying...all day long!
The most frustrating thing was that as of the beginning December 2009 I had just finished a six week round of oral Doxy along with pulsing oral Flagyl and I was feeling more energy than I had had since I first fell ill in 2008..and now I was put back to bed for my back :( MENTALLY...this was super challenging!! Rehab continued through May and as my health declined once again, I was back to pulsing oral Doxy along with my weekly trips into the city for IV Vitamin treatment.
SPRING 2010: By May we thought that maybe I would be able to sneak through this without surgery as I had begun to feel better after 4 months of rehab. On May 10th I woke up with a very Strong Herx reaction that landed me in the hospital thinking maybe my bulge had pressed into my spinal column and I may need immediate surgery....very SCARY!! Welllll...instead it was a Herx that had caused a nerve to "freak out" and cause some crazy symptoms. The positive was this episode forced another MRI which showed us that all the rehab had WORKED :) I WASN'T curred, in fact the Herx had really aggravated the nerve and I was in a bunch of pain for over a month...but surgery was no longer even an option and homeopathy and acupuncture became my answer to calm the nerve!!! The Surgeon said it was a MIRACLE!! I agree...
PS...My gut feeling is that both my herniations (2002 & 2009) had to do with the LYME and it causing weakness in my spine. I think that until I am able to really exercise and strengthen my spine, abs and all the muscles that protect those discs...I will still be at risk to re-herniate. I am continuing all my rehab in hopes of the day I will be strong enough to really exercise again!!
I also had another pretty major episode in May. My weekly IV Vitamin Therapy brought on a severe episode of vomiting, diarrhea and almost passing out in the Specialist office. Fortunately my Specialist was still in the office and took me straight back to test my sugars. I was at 400..normal is between 70 to 90. This promoted a 5hr glucose test and a diagnosis of hypoglycemia and borderline insulin resistance. This mean't more tweaking of my already ridiculously strict diet...arrrghhhh...and lots of finger pricks as I tested my blood at least twice a day. We still have no full answers on how this all works into my recovery...still a bit confusing for me...we will see!
SUMMER 2010: I NEEDED A BREAK...every Lyme Patient has this moment!! You are DONE!! I was actually feeling good...having some full days of activity...WHAT!!! I know...and I was afraid to take anything that may cause a Herx. I knew if I slowed down my treatment I would relapse...probably badly...but I NEEDED the break! It all came at a good time since we were MOVING...yes MOVING... into a new house after 11 years of building our family in 1 HOME...talk about major purging and packing!! Kind of a scary undertaking to a chronically ill Mom who rarely has a good day. BUT...God is good!! I had about exactly 3 weeks of mostly GOOD days :) Just enough to do the bulk of the work (with tons of help and NO LIFTING) and we where finally in our new home!!
FALL 2010: On Sept 28th I finally had my long awaited appointment with my Specialist...in my HOME!! Yes, my relocation out east meant that a good majority of my appointment would now be in my home because it was closer for my DR :) I admitted my self imposed BREAK...he kindly evaluated and put me back on treatment...Doxy, Herbs (Samento & Banderol) along with a more minimal list of supplements to try and keep my stomach stable...and then sent me for a ton of blood work! The most memorable moment was when we decided IV antibiotic treatment was worth pursuing...a huge step for me! One I wanted to avoid but began to feel peace that this was the right time and the right step.
After spending Oct and most of November on and off oral Doxy due to stomach issues and feeling pretty crappy...I knew IV antibiotic was the next best step! I waited to hear from my Specialist that maybe my Insurance had actually approved my IV treatment. This all led to a crazy few weeks right over Thanksgiving of me literally playing the middle man between my specialist, hospital, homecare company, home nurse, insurance company and nearly losing my mind!!! This is what it takes as a Lyme Patient to get the treatment that should be right at our finger tips..instead...if you don't fight...you get NOTHING!!
We started SLOW...my specialist was super worried about how I would handle the treatment. I could hardly get through Vitamin IV therapy without becoming VERY ill...how would I respond to IV antibiotic???? So 1 gram of Rocephin (half does) for 14 days was the starting point. I DID IT!! After 3 weeks we moved to 2 grams and I have now successfully completed 2 weeks on 2 grams :)
LOW POINTS....Had some rough Herxing...totally stiff neck more than once, laid out flat for 48hrs at a time, weakness, major muscle spasms, loss of the use of my legs, major nero stuff, etc...the USUAL!! I also have become badly anemic once again and am back to NYC for IRON IV treatment along with Vit IV treatment twice a month. Hydration at home through the IV has also become a regular part of my treatment every other day. I also had to be carried out of church for the first time after 2 years of somehow avoiding that...humility continues to be a part of this journey!! I spent New Years Eve Herxing terrible, ruining my families plans to go out and wondering if this journey will ever end...which means...it was time to remind myself as I do often of the high points...
I am a different person than I was almost 3 years ago...in every way! Some have asked if I think IV antibiotics will be my "turning point"...I think the positive part of this question is that it has made me realize how content I am in NOT knowing the answer to it! I think I end this year with my HIGH POINT being that I have peace in the process. I really have no idea when I will feel "well" or "normal" again...and that's OK!! I am resting in the process...its taken almost 3 years to get to this point but as I enter 2011 I feel that I have HOPE and PEACE all at the same time. If I find healing, or remission or just another year of more treatment...2011 will be successful...part of FIGHTING is RESTING and TRUSTING in the arms of Jesus!!
Soooooo...2010...was also a successful year!!! A year full of fighting, full of challenges, full of highs and lows in this journey with Lyme...but is was also the year I found PEACE!! Now my New Years resolution is to walk in that PEACE in 2011!! I pray for all of my fellow Lymies who are also suffering daily or for those of you who face your own daily challenges that you to will also find PEACE and REST in 2011!! HEALING is a daily journey...and we are on our way!!!
I can not end a post recapping the whole year without saying thank you to all those who prayed so faithfully!! Your prayers are felt daily and carry me in this journey...THANK YOU...and please don't stop!!
