a personal update and hello treatment round #5

April 2, 2018

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

-2 Timothy 4:17-

"In the morning I lay my requests before you and watch expectantly".
-Psalm 3:5-

I have been staring at my computer screen the last couple of days 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. 

These past couple of months have been a beautiful whirlwind since my doctors appointment at the end of January. This winter was a total gift and I was able to start the beautiful process of learning how to ski (something that I have completely fallen in love with!), get back in the classroom for a sign language class, and participate in beautiful and precious ways ... in life for the first time in almost 5 years. 

To be frank... it wasn't always perfect - but it was beautiful. It was 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* And this has made things beautiful... 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 may sound weird- I still love that I can start doing some of these things but there is also the reality of cleaning that is way different than I dreamed from my bed years ago. *smiles* In some ways I struggled deeply with guilt over this and have been struggling the last several weeks until I had a wonderful and frank conversation with my medical team. 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 all of this (as I shared back in February) I have been rejoicing with all good tears about how far things have come and where I am at in this journey. I shared with my instagram community in February that we continue to rejoice that one of the treatments that I have been doing has continued to eradicate two co-infections. This was something we never could have planned on and I weep to see once again the tender ways that the Lord works everything out together. This was HUGE news as I had assumed that this would still need at least 2 years of treatment of this ALONE. 

We also received testing back that showed clearly what type of medication the infection that I have been fighting since December 2016 would need. This testing was extremely specialized (and very expensive) and we are so grateful for the knowledge of doctors who know how to never stop looking for answers to find solutions. Unfortunately, due to some logistical matters (out of the control of anyone) the medicine that I would need is in high demand and has been out of stock. The original goal was to start the treatment round in February and be done by the middle of March (at the latest). This has (obviously) not happened. We were overjoyed though to receive the news last Tuesday that the medicine was in stock for me (I was placed on a wait list and my number came up) and as I type it it is currently at work. 

In addition to this IV med (which will be the main component of this treatment round #5) 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 this additional drug that will hopefully (and prayerfully) go to work on helping to correct my immune system. 

To clarify, 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. (If you are new to this world then think of it as similar to a cancer patient who has rounds of chemo or radiation- it is a similar process in regards to the name.) 

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 shop, 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. 

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

But the truth of I Timothy 4:17 shouts 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 we have:

(1) For prayers for pain.

This treatment round has caused a ton of pain already and I would covet prayers for the removal of this.

(2) For Nausea to be relieved and my appetite to return
This treatment round has caused a ton of issues with nausea and sickness and my appetite has been completely wiped out and unfortunately is predicted to stay this way. I am not going to go into details, but would appreciate prayers for this area. 

(3) For prayers for my parents.
We are about to start year 6 of this journey 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.

(4) For Finances to Be Met for all of my Treatment Needs.
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. 

(5) For some unspoken Prayer Requests.
"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. 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 do this treatment 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-

"When the time is right, I , the Lord, will make it happen."
-Isaiah 60-

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