Caravan Sonnet: Notes from the Porch {thirteen}- the journey continues

1/12/14

Notes from the Porch {thirteen}- the journey continues

My dear sweet friends and fellow prayer warriors, I am always so humbled by the continued support, prayer, text messages, letters, packages in the mail, and the ways that you look to uniquely and creatively touch and encourage my little heart. Thank you for walking this long journey with me. I am so incredibly grateful.

Thank you.

Some of you have been asking for several weeks about how things are going since my very severe reaction to a new medication last month. I so appreciate your gracious patience and understanding that it has taken me several weeks to recover- both physically and emotionally from that time. In many ways it is hard to believe that it has only been a month since my last update because it feels so very much longer than that. Today I wanted to take a few moments to answer some of your questions and give some updates. Thank you again for your sweet understanding that while I do choose to be open and vulnerable about this journey here on the blog I have also chosen not to share every detail. Some things, as I am sure you can imagine, are so incredibly difficult & painful enough to live through once that I have no desire to talk about it on the blog. Thank you for your sweet understanding. Here are some updates (in particular order):

(one)- As I mentioned in the last Notes from the Porch update we found out that my metabolism has decided to completely shut down and that I would be trying a new drug. The first couple of days of this drug "appeared" to be ok. I wasn't doing great but I wasn't doing awful either. Unfortunately this particular drug can take up to three doses to have a reaction to and this is what happened to me. On Tuesday, December 17th I went into a SEVERE anaphylactic shock. I won't even begin to tone down that this was probably one of the scariest moments of this entire journey. I was so incredibly sick that I couldn't even move, couldn't breath, had extreme hives, a heart reaction, numbness - basically you name it- it happened. Since I was so sick that I couldn't even get to the car my parents called the ambulance and we went to the ER. To be frank- I have never never felt that sick in my entire life. I couldn't even pray complete sentences. Instead I was just whispering "Jesus, Jesus, Jesus" as my parents continued to pray over me. THANKFULLY, several extreme dosages of different meds at the hospital and LOTS AND LOTS of IV bags of fluids started to help calm this reaction down. I won't lie to you-  as several of you are aware from the text messages that continued for the next several days (thank you so much again you amazing amazing friends that I can call and text any time of day or night!!) - the next few days were extremely unpleasant. Thankfully after two weeks ALL of the symptoms are out of my body. PRAISE GOD. 

(two) A few of you have asked what this means now for my metabolism. Honestly, I am not sure (which you are about to see is a HUGE theme throughout this post *smiles*).

(three)- While I was in NY I was able to have some of the treatments that are a little bit different then here in the south which was a huge blessing. Unfortunately, I somehow also contracted a serious eye-infection that has brought some additional questions for us to explore. (Eye problems- especially new ones that are not common in your life- are a common symptom that Lyme is spreading.) My eye doctor in NY is wonderful and she is familiar with Lyme has stated that we can't say whether or not the Lyme is causing the new eye issues or if this is simply a "fluke". Again, we are not sure, but we do know that this is an area that we need a Lyme specialist to be helping us. I am currently on eye drop steroids & the pain and infection is improving. In the meantime I am totally rocking the 1990s glasses. hahaha! Yes, I can't wait to be able to start wearing contacts again. One more week! *smiles*
(four)- Unfortunately while I was in NY I contracted an infection  and I can't even begin to express what a GOD THING it was that this did not become more serious. That is simply an ANSWER to SOO many of your prayers. THANK YOU!! While I felt pretty miserable, I cried with thankfulness that this did not involve a hospital stay! Thank you for all of your prayers! 

(five)- As I mentioned in my last post my stomach and colon have continued to give me lots of issues. On Wednesday night last week I was hit with SEVERE stomach cramps that were typical of times before I went out to Whitaker's last year. This one was so bad that I literally felt like I was dying and kept almost blacking out due to the severe pain. We have examined a few things with the doctor and we are going to adjust a few things. I know that many of you know this but this is one of the most difficult parts of this journey for me. A CONSTANT prayer request is for pain and healing in my gut area. ESPECIALLY because (as many of you know) this is where your immune system functions and processes all of the important things that you need. Due to some issues (that I am not going to discuss on here) I am not able to do more of the "alternative" healing ideas- (i.e.- Gaps, etc.) but I do appreciate so many of you that continue to email suggestions. I definitely always welcome ideas and I appreciate your kind understanding that we move forward with decisions that are best for my body. I continue to covet your prayers in this area as there are a lot of unknowns in this situation. 

(six)- Next week I have an appointment with my hematologist  and lots of blood work to determine if I will need to start in on the iron treatments again. Honestly, while there were no severe reactions to the iron they are not that pleasant and am praying that this is not necessary at this point. 

(seven)- We continue to praise the Lord for His mercy that there are no new Cancer spots at this time. I have a check up in a couple of weeks and they will be doing a few biopsy's on some spots that they are watching. 

(eight)- I can't even being to express how grateful I am for those of you that gave so generously in the fall to Rebecca's Run, to those of you that continue to give gifts of necessary alternative items (essential oils- Michelle, thank you thank you thank you friend!), to checks that show up in the mail at the exact right timing, to those who just send me a gift card with a note that says, "we love you and we are praying for you everyday", to the generous financial donations of friends from years ago that I have not seen in over a decade, to the generosity of strangers who have just heard my story and want to help. I am so incredibly grateful. Each donation is used for my treatment and medical expenses alone and every.single.penny. is a gift. Through you I am able to have some treatments right now (reflexology, hyperbaric oxygen treatment- soft covered, etc.), see some doctors that I must see, and help pay for the hundreds and hundreds of little daily medical needs. This is not dramatic to say that I honestly don't know what my family and I would do without your generosity. 

Thank you. Thank you. Thank you. 

(nine)- Thank you so much to a couple of you that have been praying for my emotions- especially with fear these last several weeks. I am SO grateful for dear dear friends that I can confide in and who lovingly and faithfully pray and encourage me with their words. Many times your text messages bring me to tears with such gracious encouragement. While it is easy to sometimes focus on the friends that walk away in these difficult and serious situations, I can't help but be AMAZED at the friends who not only have stayed in this journey but TRULY have taken on my burdens as their own. In many ways they have lovingly showed me again and again that the Lord is near to the brokenhearted. Thank you.

To those of you that are not familiar with anyone who has a serious or chronic illness I don't know if I can adequately describe the way that fear can truly paralyze you. There are so many things that you can be afraid of: that this will never end, that you will never get better, facing your own mortality, financial needs, etc. It is hard and there are times throughout this journey that fear has come in to rob me of the precious moments that are in front of me. After the reaction to the drug and the night in the ER I texted one of my friends and just broke down saying that I was so overwhelmed with fear. Emotionally the last few weeks - both prior and since the severe drug reaction in December -have been incredibly difficult for me personally as I was fighting to finish up one of my last semesters of graduate school, I made the decision to not continue to go for my PhD next year (which felt like I was "stuck" in this journey), the reality that the life that I "wanted" is not possible right now, a close and dear friend passed away due to an illness, some personal things were going on, the pain and nausea were a million times worse then ever in this journey, hearing the news that a former co-worker and former students mom had gone home to be with Jesus, my doctor from Whitaker's telling me that "she wasn't sure what to do as their protocol as always worked for others", finding out that a doctor (who is a Lyme Specialist) is not taking new patients - and this was someone we were planning to see in March and feeling completely clueless as to where to go from here. 

Needless to say it has been a very difficult four weeks. 
There have been lots of tears. 
Lots of quiet moments asking the Lord for direction. 
Lots of hugs of comfort here at our house. 
Lots of "what are we going to do now" conversations. 
Lots of questions. 
And to be frank, not a lot of answers yet. 

As I said a very long time ago in my very first "Notes from the Porch" post, my faith has not been shaken despite this time of severe testing. I must learn to be faithful in this assignment… one that I certainly never would have asked for but one that I pray will and can still bless and serve my precious Lord and Savior. Yes, I do have certain fears about the future with my health and there is a deep sadness as I am surrendering in a new way than I ever have had to to my precious Lord. There is a WHOLE new vocabulary that I am having to learn and coming to know… one filled with health jargon that I have never wanted to know nothing about. There are lots of tears. BUT there have also been extraordinary blessings amid the darkness.

I do not believe that this is an accident, and I don’t believe that this is not “of God”. We live in a fallen world where all of us- and creation in general- fall short, because of sin, of what God intended for us, and illness and crime and cruelty are just reminders of that “fallenness”. I trust God’s sovereignty over my life and for this sickness. God can HEAL, but in the meantime I trust that even this illness and these problems that I am experiencing may serve HIS good and holy purpose. I pray that through my little life even this situation may encourage others to arouse love and care in others, to inspire people to turn our trust from myself to HIM and maybe in some small (struggling) way maybe spur some to reflect on what is truly important in life. I TRUST that I WILL see the GOODNESS of the Lord in the land of the Living (Psalm 27) and do know that the Lord truly SHOUTS to us in our pain.

So as I move forward in the next days and weeks ahead I would covet continued prayer for the things all mentioned above and for those that remain deeply difficult and unspoken. 
I ask for prayers for wisdom for these next steps of the journey and where to go to receive continued treatment- whether back to Whitaker's for another round of treatment or moving forward, we covet your prayers for wisdom. Thank you so much sweet friends. You are such a blessing to me! Love y'all!!

2 comments:

  1. <3 Wow...girl! I just want to wrap you up in the biggest hug ever! I'm so sorry for how hard this past month has been.... :( Definitely know how scary reacting to a medication is....and know what it's like when all you can barely get out of your mouth is "Jesus, Jesus...Jesus." <3 Oh the comfort He brings when nothing else on earth can bring relief from the physical and emotional pain. So grateful He is your All-Sufficient One through this extremely difficult time. Praying for you healing and for added strength, grace, hope and provision as you continue this road to healing. I love you!

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  2. P.S. You look absolutely beautiful in the picture!! Your SMILE speaks volumes of the ONE who brings you TRUE JOY! <3 Our Jesus...<3 Keep smiling girl!! You're one day closer...<3

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