Notes from the Porch (thirty-three): wasted time

April 14, 2015

*There are so many of you that have sent me beautiful text messages, lovely emails and facebook messages, left compassionate voicemail messages, and have sent the sweetest cards in the last couple of weeks. I appreciate your patient understanding as I work through answering each of them. They are so precious to my little heart that I didn't want to just give a quick reply and I appreciate your kindness in my delay to respond as quickly as I would like. I also appreciate your patience and understanding as I had to contact several people and talk with them about my new plan before announcing it "publicly" as it affects them. As you read below I am sure you will understand."

** While I have chosen to be very open about this health journey through Lyme and Cancer this post is going to be a little more ambiguous in the details. I appreciate your sensitivity and compassion to this and the choice that I (and my family) has made at this time.**
"And I will restore to you the years that the locust hath eaten, the canker worm, and the caterpillar, and the palmer worm, my great army which I sent among you."
-Joel 2:twenty-five-

Around this same time last year, I wrote a Notes from the Porch update (#18) that I have read back through several times over the last couple of weeks. It is strange at how similar these past few weeks have been to that same time last year. In addition, the same verse (I Kings 19:12), has brought as much comfort today as it did a year ago and honestly maybe even more so. Joni Eareckson Tada once said, “God is never closer than when your heart is aching.”  How absolutely true this is.

These past two years of dealing with the diagnosis' of Advanced Late Stage Lyme Disease and Cancer plus other diseases have been filled with incredible ups and downs. Sometimes it seems like days are flying by and other times it feels like I live an entire year within the course of a day. 

The physical difficulties, pain, and extreme sickness has dominated many days and nights and as I recently said to someone, "I honestly do not remember what it is like to feel well anymore." To be frank, this is nothing unusual or special for anyone fighting a serious illness. It comes with the territory and yet as time has continued there is a different type of pain that has often affected this journey more than the physical- the emotional speed bumps that occur has been harder to deal with. 

In many ways these past few weeks have made me examine my heart and where I truly find joy. When I went out to California the original thought was that I would be looking at a PICC line or a Port for the upcoming weeks/months of treatment. Due to a variety of reasons (many that are good) this is not the best time for my body to do this. Because of this I have decided to move forward with IM shots to give my stomach and digestive system a break. I have not shared on here that this area has once again been causing me lots of issues. The hope was that by taking 5 weeks off of several of strong medications my intestines would have a break. They have, but it is not long enough and my body still needs the antibiotics to fight this disease and its co-infections. So we move forward with confidence. For the next (approximately) eight weeks I have started a new course of antibiotics. Despite the fact that one of these is a baby dosing of antibiotics I am already feeling the side effects and have been herxing like crazy and feeling pretty awful. I will be continuing this (as I mentioned) for eight weeks and then my mom and I will be flying back out to California at the second week of June so that I can start the phase of IM shots. We will be out there for approximately a week and I will try these shots in the office so that if there is any immediate/severe reaction I will be able to receive immediate medical care. I will try our first shot option on Monday and if (hopefully and prayerfully) there is no severe reaction then I will stick with this drug. This drug is the strongest of the three that I will try BUT the shots would only be 1-2 a week and last for 10 weeks for the course of this. If I do have a reaction then Tuesday I would try shot #2 and stick with this one (if there is no reaction). This drug is still good but not as strong and because of that I would have to have the shot 4 times a week for six months! If I have a reaction to this then shot #3 will be tried on Wednesday and so on and so forth. 

OBVIOUSLY our prayers are with option #1 to be the solution and I would covet your prayers that this would be the option that would work well for my body.

But the difficult part of this plan is not so much the physical side effects that I am dealing with (and there are PLENTY of them) as much as the emotional side effects of this decision. As my doctor and I spent hours discussing all of the different pros and cons of this decision and the timing I knew that it would affect several important events that I had been looking forward to for almost a year. With this plan my immune system will not be strong enough to be "out in public" as much as I was hoping and have been desperately trying to work towards for the last couple of months. One major and important event that I have been looking forward to and that has been brightly and happily written on my calendar is Katherine and Gary's wedding. Even as I write this I have tears. To miss out on daily events and long to live a normal life is a daily grief that I struggle with but to miss out on important and once in a life time events truly has caused so much grief. I have cried so many tears these past couple of weeks. I love Katherine and Gary so much that this has truly been one of the most difficult parts of this journey. In so many ways it reminds me of other heart-aches and other things that I have had to miss out on over the past couple of years due to my health. And in many ways thinking of all of these things makes the years seem long. And the journey before me seem even longer. 

Each night as I have gone to sleep and laid in my bed I have sobbed and wept as I cry out to the Lord. In addition to the wedding there have also been a couple of speaking engagements that I have had to cancel and this has been frustrating due to the fact that I felt that this would help me in the "professional" side of my life. There have also been several business things for my shop that I have now had to cancel and that I was hoping would help bring in more help financially in the long run. Another trip to see my best friend had to be canceled a couple of weeks ago and all of these things together has been heart-wrenching. 

I had someone ask me why I would be so upset because this is good news to not have to do a PICC line or a Port right now and to be able to continue to move forward. They went on to say that they thought that I would be rejoicing that since a year ago I am doing so much better in many ways. I am sure that they meant well but honestly my heart was not there. And in many ways it is still not. It is very easy to say (from outside the situation) that this might be "good news" and that this will "help me get better". BUT at the same time you are talking to someone who has been fighting and struggling to get well (even before we knew I had Lyme) for the last eight years (since I contracted Lyme). And the last two years have totally shattered my life - with having to move home to my parents, quit my job, give up ballroom dancing, give up a lot of independence, take a break off from school, lose opportunities to live "real life", not be able to see my friends or family as much as I would like, not live a normal life at all, etc. SO dealing with this new set of things that I have had to say "no" to... well honestly friends it has just broken my heart. 

This has just compounded a lot of feelings recently that I have been dealing with of that this is "wasted time". I said to some of my closest friends recently, "I am tired of this journey and honestly I am feeling that this is just such wasted time. How can being sick be a better part of God's plan when I feel that I am not able to "do" anything for Him better than me being healthy and able to be out in the world." I will be honest friends that I think that this is one of the lowest emotionally that I have felt in this entire journey. God is so loving to have placed such encouraging people in my life as these friends have spoken words of encouragement, blessings, and truth while crying with me.

God shouts to us in our pain... He whispers love and encouragement to the brokenhearted...

I love how the Lord has been gently whispering to my broken little heart. The Lord has been bringing Joel 2:25 to my mind over and over again in the last couple of weeks. ""And I will restore to you the years that the locust hath eaten, the cankerworm, and the caterpiller, and the palmerworm, my great army which I sent among you." This verse is such a perfect verse and one that has been shouting to my little heart. The Lord promises to RESTORE to us the YEARS that the locust has stolen... So many of you friends have been struggling with things like I have for years and the Lord is promising to restore those to us. He doesn't talk about restoring minutes or days but YEARS. 

The Lord is close to the brokenhearted and I am just clinging to Him... minute by minute... day by day...

As I move forward here in the next couple of months I am clinging to this little verse that holds so much promise. I know so many of you are praying and I would covet your prayers for these specific things:

(1) Emotionally- for the things that I have described above. 
(2) Physically- for my body to be able to handle the intensity of these upcoming months (and for strength for the side effects that I am currently experiencing!)
(3) Physically- for severe back pain- I am struggling with this again.
(4) Financially- These shots are not cheap and are not covered by insurance. Prayers for this and for donations to my "Go Fund Me Page" for our upcoming trip out to California which will be expensive are appreciated!! We are not sure where are all of the funds are going to come from but are trusting the Lord for His provision. 

Thank you so much for your understanding hearts, your countless prayers that have been prayed on my behalf, and for continuing to lift me up to God and for walking with me through this journey. For reasons that are unfathomable to me it looks like this journey is going to continue much much much longer than I ever believed it would. And while I don't have any answers I am placing my broken little heart in His hands. For He continues to whisper His love and hope of no wasted time and restoring the years... 

Each and every day. 

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