a personal update and hello treatment round #7

March 8, 2019

"The Lord stood at my side and gave me strength." 

-2 Timothy 4:17-

I have been staring at my computer screen the last couple of weeks since my doctors appointment out in California in February wondering exactly what to write in this post. I think that I thought that the longer I waited the more brilliant words would come. *smiles* They haven't, and I appreciate your patience in this possibly rambling post. 
I took the picture above when I was in Lake Placid last week in the very wee hours of the morning. I was standing on the road- all by myself amidst the beauty and thought- the winding road is ugly and beautiful all in one... there is beauty to be found here in this part of the story and I will fight to find it and hold on to it fearlessly.

As a bit of background... my health since August has struggled due to a variety of reasons (some are extremely personal and I have decided to not go into them in this space and I appreciate your understanding), but two specific ones are because of the accident in August and the other is another failed treatment round for a specific infection that I am still dealing with since 2016. This last part unfortunately causes lots of pain and also has become resistant to different types of treatments, therapies, alternative types of addressing this issue that we have tried. This last issue has wiped my energy from me and I definitely have felt that while we have taken steps forward in healing we have also taken some steps back due to this specific infection.

It's a strange dichotomy because there are so many beautiful healing things that have happened and in many ways slowly and surely I am still moving forward... but this last issue does have to be addressed and dealt with so that the healing foundation that we are building continues to grow and not go backwards. 

So... on one hand I am working full time here on the blog and with my shops and as a writer and am applying for some work positions, while on the other hand am a bit stuck in limbo from being able to move fully forward with life in every aspect as I hope to. There is a lot of learning experiences after being sick for so many years on how to balance my energy levels with the realities of things that are "everyday components". 

Let me say this- I know that is confusing and before I receive a ton of emails asking for details I am going to ask that instead of questions you just pray. If you have questions please know that while I appreciate them this is one time where I have decided to just lay this out without a ton of explanation for reasons that are quite personal. Thank you for your kind understanding.

To be frank... it hasn't always perfect - but this time is beautiful in its own raw and real way.  There have been lots of tears behind the scenes and a fighting to find the beauty in everyday in new and sacred ways. It is a learning experience on how to balance the beginnings of life along with continued treatment and the not so "exciting" things that I haven't been able to do in years. Hahaha... yes, I did once say that I missed grocery shopping... not so much I have learned. *smiles* But even grocery shopping has been teaching me some intricate parts of healing and life... learning in new ways things that I like and things that I think I "romanticized" along this health journey of getting well...like grocery shopping, wash, household chores, etc. 

It probably sounds strange - I still love that I can start doing some of these things but there is also the reality of cleaning the car that is way different than I dreamed from my bed years ago. *smiles* In some ways I struggled deeply with a survivors guilt over this and have been struggling the last several weeks until I had a wonderful and frank conversation with my medical team and my closest loved ones. Their words were beautiful and freeing and a gift as I continue to heal and fight to get my life completely back. 

In the midst of this and life I have also been continuing treatment and preparing for this next round. For clarification just because I call it a "treatment round" doesn't mean that I am ever off treatment- these "rounds" are just more intense and are added to the continuous treatment I am on. Years ago I started naming different "rounds" a number as a nickname when there is a SERIOUS and INTENSE push at alternating times. There is NO time off in Lyme world so there is never a break- there is just more times of intense treatment. 

I clarify that because someone recently emailed me and told me that if I would "stop traveling and taking time off then I would get better more quickly". Years ago I may have cried at the insensitive comment, but now I sadly smiled. I hope and pray that no one has to ever walk this road that those of us with Lyme have to, but I also hope and pray that there will be better information about Lyme and the reality of treatment in the future.

 Most of us, including myself, are desperately trying to pay for treatment, bills, etc. and the way that I do that is through my books, etsy shops (december caravan) and (december lane) , and this blog (which is partially a travel blog). In the midst of all of this, I never stop treatment- I continue it every single day- even when I am traveling. I wish the cure would come quicker... not only for me, but for all of my Lymie friends. Someday... someday I pray someone figures out a cure. 

So... treatment #5... This medicine is.... rough. It is difficult. It is scary. It comes with a whole host of side effects that I don't want to think about, and in many ways I wish we could just fast forward the weeks on the calendar till this round is done. 

In addition to this new IV med (which will be the main component of this treatment round #7) I have continued with other IV therapies, oral meds, supplements, homeopathic and herbal components, detox therapies, exercise therapy, alternative treatments, etc. I will also be adding in three additional drugs that will hopefully (and prayerfully) go to work on rebuilding while at the same time killing the infection.

"The Lord stood at my side and gave me strength." 

But the truth of the verse above and the verses below shout to my little heart and gives me strength. The Lord is by our side. The Lord is the one who gives us strength for the day. He is the lifter of our heads, our strength in the sorrow, and our joy in our pain. He will carry me each step of the way and show up with grace that I haven't even experienced yet. 

Thank you so much for your prayers, your encouragement, your love, your messages, your letters and packages that show up at the most perfect God-timing and your continued prayers on this very long journey. In addition to praying for the start of this treatment round, there are a few additional prayer requests that I have:

(1) For this medicine to work
I admit... I am a bit weary from this incredibly long journey and this will be the third specific round for this one infection and so I am cautiously hopeful about this... the disappointments from the last three rounds have been crushing and a tiring blow so prayers for my heart and for this medicine to work would be greatly appreciated. We are needing this to work... and again... thank you for praying

(2) For prayers for pain.
This treatment round causes lots of pain and I would covet prayers for the removal of this.

(3) For Nausea to be relieved and my appetite to return
This treatment round will make me quite sick and my appetite has been completely wiped out and unfortunately is predicted to get a bit worse. I would appreciate prayers for this area. 

(4) For prayers for my parents.
 In June I will start year SEVEN of being at home with my parents and this long healing journey. They have been soooo incredibly amazing and I well up with tears at all that they have done for me and to help me get my life back. But being a caretaker is hard even under the best of circumstances and it is draining and exhausting and long and tiring. Would you please pray for them, for strength, for grace, for encouragement, for people to walk along side them, for their needs to be met, for their joy, and for their protection and their own health? Thank you so much.

(5) for finances
This treatment round is ... expensive. It is in the thousands of dollars expensive and that is not even touching all of my the typical meds and supplies that go into everything every month. Thank you for your prayers for this area. 

(6) For unspoken prayer requests of the Heart
"In the morning I lay my requests before you and watch expectantly". This verse from Psalm 3 has been on constant repeat the last several months. I am waiting and watching expectantly for different ways that I am confident the Lord will work.

I want to say a special word of thanks to each of you that have checked in on me, loved on me, have sent cards and text messages, sent gifts, provided financial provisions, words of encouragement, and phone calls these last several months and years. So many of you have listened and cried with me, laughed and rejoiced, and have gently and specifically reminded me that the Lord is near. I so appreciate those of you that have moved into this time with love and compassion, not giving space, but gently reminding me that I am not alone in this journey, speaking truth and courage to fears and joyfully praying for the future. Each of you are a gift.

Everyday in this journey with my health has felt like a miracle in so many ways, but today as I ponder the start of this new treatment round tomorrow I sit and marvel a little more and with overwhelming gratitude. God has been so good, just like He has been every single day of this journey. Thank you so much for continuing to be a part of this journey.

"Our mouths were filled with laughter, our tongues with songs of joy. Then it was said among the nations, "the Lord has done great things for them"."

-Psalm 126:2-

"They may weep as they go out carrying their seed to sow, but they will return with joyful laughter and shouting with gladness as they bring back armloads of blessing and a harvest overflowing!"

-Psalm 126:6- 

"The people who survived the wars have found favor in the desert... once again I will build you up and you will be rebuilt, my dear people... once again you will take your tambourines and you will go dancing with happy people... once again you will plant."

-Jeremiah 31:2-5-

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