I had a long chat with DR H last Monday. I finally told him that I have hit the proverbial wall and have given up. And as a result have stopped taking my medications. Obviously he was not at all happy to hear this. I got a bit of a verbal spanking especially when I confessed that I have been off everything for the better part of 3 weeks. However he was also very understanding and assured me that what I am feeling and going through is perfectly normal. He also assured me that I am making progress, that he sees the improvement even if I can't.
My conversation with him certainly helped to bolster my spirits and provide some much needed reassurance that all is not lost. He said he would be 'okay' with me being off my IV meds for the next 3 weeks IF I fully submitted to the treatment plan he prescribed for the interim. That plan includes an intensive 3 week detox protocol and micro doses of a new oral abx to help keep things stabilized. I agreed to do it. I have to. And I will...
...but I am still struggling to move forward with this fight and as a result I have not yet implemented this new game plan. (But I am taking the oral abx needed to treat my PICC Line infection)
Naturally, I've spent a lot of time trying to analyze and understand this precarious predicament I find myself in; this bereft emotional state that has paralyzed my fighting spirit. You can't change what you don't acknowledge. According to Dr Phil anyway! So, I've spent a lot of time over the past 2 weeks journaling and digging deep. It has helped me sort through and face the plethora of emotions that have overwhelmed me. Ultimately I have finally arrived at some conclusions. As it is report card month in Goertzen household, I've taken the liberty of grading myself on the fearless front.
My 'grades' are as follows:
2 D's and 2 F's
My little drug holiday spells capital DENIAL.
I just want to run away and pretend I don't have Lyme Disease anymore. That it doesn't exist and that it hasn't turned my world completely upside down. I want a break from every waking hour being about swallowing pills, knocking back detox cocktails and being tethered to an IV pole for 4 hours a day. And I don't want to endure the excruciating agony of herxing anymore.
Since stopping all my meds, I have been the most functional I have been since August. I've been able to participate in life again. I've been able to spend time with friends. I've gone for coffee with a girlfriend. I've gone for dinner with friends TWICE. I was even able to get out to our beloved care group once. And I got to go to church! The last time I remember being in church was LAST Christmas Eve - Now, mind you, I still haven't made it to church on a Sunday morning BUT I was able to go to the Ladies Christmas Tea at my church.
Believe it or not, my big night out was almost foiled by my PICC line infection - which was diagnosed by my home care nurse 4 hours before I was to be at the tea. Finding out about the infection was very upsetting and scary.
It was also super annoying and irritating...simply because I had made some special festive PICC Line covers for my big night out.
But because of the infection, I had to be be bandaged from elbow to armpit, which meant my festive PICC Line apparel was too small.
Fortunately, I managed to think up a last minute alternative...
I cut the foot off of one of Taylor's dress socks and bedazzled it. Hee hee!
I am so glad that I was able to make it! And not just because I got to wear my makeshift PICC Line Bling. More importantly, I was able to spend the evening with my dear friend Gillian - who was willing to hostess a table just so that me and her could attend. As an added bonus, I even got in a little visit with my cousins, managed to finagle some amazing Biscotti from my Auntie Dot and spend some time with my mom. It was a fabulous evening!
My drug holiday has afforded me the luxury of being with my family. We've been able to do things TOGETHER as a family. To Laugh. To Live. To Nurture. Play board games. Go to the movies. Read bedtime stories. Take the kids to school. Sit at the supper table and eat with my family. Go driving with Taylor (he got his learner's in September). Go on a date with my husband. Decorate my house for Christmas (okay, my mom decorated but I 'supervised' the event. It's awesome! You Rock, Mommo!!) And it even looks like I am going to be well enough to go to Taylor's season opener basketball game tomorrow night. Which is a really, really, hugely important to me to be there for him!
When I am on treatment and herxing, I am not able to do any of these things. In the past 6 months, I have spent more time herxing than not. The better part of September and October the herxing was so intense that I was rarely able to be out of bed. At one point, I could not even walk the short distance from bed to bathroom. Herxing steals any semblance of life away from me and my family and creates absolute chaos.
So as a result of my little drug holiday, I've not been herxing and I have gotten to live some life.
"How's that working out for you?" questions the Dr Phil in my head
"Well, my denial has afforded me the luxury of living some life." I argue with the guru of common sense logic.
"Sure, but Denial is Denial. And Denial is really an asinine way of life." the Dr Phil in my head matter of factly states.
His sensible synopsis rings irritatingly true.
"Oh,Buzz off, you big, bald baffoon!" I screech. "Leave me and my denial alone!"
But the Dr Phil in my head is as bang on as his TV counterpart. At first glance, my little foray into Denial has worked out okay. Yes, I have felt like I had a life again. However, I must admit that the quality of that life is poor and it has been lived on a relatively small scale. I may be functional but I am far from well.
I've come up with a little analogy to better explain it. However, keep in mind, analogies aren't exactly my strong point.
For the most part, on a 'good' day, I feel like I have a really bad flu. On a bad day, my body feels like it has been plowed down by a mack truck and then for good measure, it has slammed into reverse and backed over me too. When I am herxing, it feels as though the truck is parked on top of me. My little drug holiday has meant that the truck drove away. Initially, having the weight of the truck off of me, creates an immediate release of intensity. The relief is so immense, that I feel 'good' in comparison. However the injuries that occurred from the truck plowing over me are still there. With each passing day those injuries are felt more and more. And the fact that they need medical attention becomes glaringly obvious.
I have re-lived this time of year 3 times over now.
3 times over in the same deplorable state.
Progress so tiny, so microscopic, it is almost impossible to see.
The approach of the Christmas season has nearly done me in this year. I never expected that this fight, this disease would rage on for as long as it has. I never ever in a million years believed that I would still be sick this year. Of course, I never thought it last year or the year before. Last year, my friends, Nancy and Sharon, came over and decorated my house for me. I clearly remember how we all agreed that their help would not be necessary next year because I would be well by then. And I believed that with my every fibre of my being. I even joked that I might just pretend to be sick in order to get them back to decorate as they did such an outstanding job!
It has been a crushing blow to still need the help this year. It has been even more disheartening to feel as though I am NO better than I was last year. Last week, my mom spent the day decorating my house for me. Under my tuteledge, she did an amazing job.:) On top of that she somehow managed to do 3 loads of laundry while she was at it.
Enjoying my beautifully bedecked home has significantly lifted me spirits. And I am looking forward to once again having my girlfriend Sharon magically turn my sad little tree into the same majestic showstopper she created last year. (That is one hardship I can happily endure!)
Each season, each holiday, each birthday, each anniversary that passes me by is a constant taunting reminder of all that I am missing. All that I have lost. Father time is unmoved by my loss and laughingly advances the hands of time with a ferocious speed. Time that is forever lost, impossible to reset or re-live once it is gone. Yes, I believe I will be healed...eventually. But no one can tell me when that will happen. Might be tomorrow. Might be this Christmas or it might be 5 Christmas' from now.
How do I keep moving forward with that staring me in the face?
My biopsy results on Felix came back a week and half ago.
Felix was negative for Borrellia.
Which is good thing.
It means that he was not annihilated by bacteria.
This is a good news.
However I found the negative results devastating.
You see, I was counting on Felix to be my motivation to keep fighting.
As crazy as it seems I NEEDED Felix to be positive. In a way I guess that would have finally been like SEEING this invisible demon that wreaks havoc on my body, on my life. And if I can SEE what I am up against, than I can fight it.
As well, I earnestly wanted to be able to send my surgeon a 'positive' result. I was hoping Felix could be used in some small way to broaden the awareness of Lyme in the medical community.
I am sad that this has not been the case.
For 2.5 years, I have fought LD.
I have fought FOR my family. I have fought FOR my husband. I have faught FOR my kids. I have fought FOR my life.
My fight has taken a tremendous toll on all of us.
It has come at a huge cost on all fronts.
Financially, emotionally, physically, mentally.
Right now, all I can see is this fight endlessly and indeterminately waging on.
All I feel is the sacrifice, the loss, the grief, the pain that it produces.
And it feels like it is all for naught.
This fight is too high a price for my family to continue to pay.
Their lives have been irreparably changed because of it. Yes, I know that some of that change is positive but this fight has caused deep battle wounds too. Some of which will leave scars that they will carry with them forever.
And so as painful as it is to admit, this is why I have given up.
I have given up FOR my family.
For the life that they need. For the life that they deserve. For the life that they cannot live so long as this fight exists.
That about sums up my grades for the fearless front.
It's a pretty rock bottom place to be.
How do I reclaim the fight and move forward with a fearless spirit from here?
Interestingly enough the answer has been staring me in the face all along. In fact, deep down, I've known what I need to do all along. I have just been struggling, even reticent to implement it of late.
Over the past several weeks, I kept having the verse from 2 Corinthians 12:10 come to mind:
"Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ's sake; for when I am weak, than I am strong."
The first part of that verse, the "I am content" part really struck a nerve. In fact, it totally made me mad to be perfectly honest. I DON'T LIKE my situation, I am GRIEVING my situation so the last thing I'm interested in doing is being content or thankful for it. But through past experience, I know that when I praise God regardless of my circumstance, it helps to change my perspective about it.
When I first got sick, God called me to do two things; TRUST HIM and PRAISE HIM. I am learning that the two go hand in hand. How can I claim to Trust Him if I'm not able to Praise Him and vice versa.
I have a little book I read on a daily basis called 31 Days to Praise by Ruth & Warren Myers.
It explains the power of praise this way:
"Even in troubled circumstances, or when God does not choose to work in spectacular ways, praise can help us view our situation through different lenses. it can help produce within us a restful, invigorating inner climate.
Praise brings obvious victory, or it enables us to turn apparent defeats (whether dramatic trials or minor irritations) into victory from God's viewpoint. It tunes out the conflicting voices that shatter our faith and block our love; and it tunes us in to God's guidance so that we can discern what action to take, if any.
True praise is unconditional. It's not an attempt to manipulate God into producing the precise results we hope for. Instead it hleps us accept our situation as it is, whether or not He changes it. Continued praise helps us reach the place where we can say, "Father, I don't want You to remove this problem until you've done all You want to do through it, in me and in others."
Through Praise you focus your attention on God. You acknowledge Him as your source of overcoming power. You begin to look at your problems from a new perspective - you compare them with your mighty, unlimited God. You have a part in making them the prelude to new victories, the raw materials for God's miracles."
Last week, I finally submitted to my calling.
It has been a difficult struggle but I am choosing to Praise Him In This Storm.
In doing so, He will give me the strength to reclaim the fight and move forward with a fearless spirit.
The words to the following song are incredibly significant to me. I have spent the past week and a half shedding tears as I have belted out this song at the top of my lungs. It has been amazingly inspiring and freeing...albeit anyone who would have heard my nasal, pitchy 'singing' voice may have found it less than inspiring!
PRAISE YOU IN THIS STORM