It’s a purple butterfly zebra kind of life

Here I sit, at quarter to eleven in the morning, in my pajamas with absolutely no intention of getting a shower.  To be quite honest, I’m actually afraid of the shower and how I am going to feel afterward.  Anyone who has experienced chronic pain and the accompanying fatigue will understand…the shower is just a terrifying experience during a flare.  It’s not because I lack ambition or stamina, it is just that I cannot begin to bear the thought of jumping into the shower with what little energy I have only to expend it all trying to get clean.

“The night racks my bones, and the pain that gnaws me takes no rest” (ESV Job 30.17)

I mean it is not like I have anyone to impress or any place I need to be; two chronic illnesses have pretty much put the death blow to any form of a social life. So, I think that I will just sit here, in my pajamas, dirty, and air my sorrows to the world.

I am finding that living life as a NET zebra and a fibromyalgia butterfly is an interesting balancing act.  There are some days when I do not know where one illness stops and the other begins.  Just recently, I was complaining of debilitating fatigue to my NET cancer doctor, who immediately placed the blame on my lanreotide injections.  One of the side effects of this medication is fatigue, and, believe me, the last few months have seen me collapsed in total exhaustion on the couch.  Life has come to a screeching halt as I have tried desperately to “catch up” on my sleep and have the energy to maintain some semblance of a life.  It never occurred to me that the true culprit of my intense fatigue was the fibro and not the lanreotide. I know it sounds dumb, but there are days when I forget I have fibro because the cancer has been so all-consuming.

Another fun fact of having both fibromyalgia and NET cancer is that one of the side effects of lanreotide is joint pain.  Wow.  More pain.  Just what I need!  Again, it is hard to tell where one illness starts and the other one stops.  There have been days when I’ve sat on the couch. legs propped up, choking back tears from the pain.

“Why is my pain unceasing, my wound incurable, refusing to be healed? Will you be to me like a deceitful brook, like waters that fail” (ESV Jer 15.18)?

Before cancer became part of my life, I had days where I could barely move from the couch.  It does not seem like those days have increased in number since starting the lanreotide; however, I do find that I exhaust faster and experience more intense pain than I had in the past. Coincidence? Quite possibly.  Today, my vision is blurring from a severe headache, my jaw is throbbing, and I am not sure if I need to report the symptoms to my oncologist as possibly stemming from the tumor in my neck or chalk it up to a bad fibro flare.  Gosh, things have become so darn complicated!  Its tough to know what to blame.

Finally, there are the GI problems; one of the hallmarks of NET cancer.  Long before being diagnosed with NETs, I was diagnosed with irritable bowel triggered by the fibromyalgia (also a hallmark of this illness).  For ten long years, my GI problems were attributed to the fibromyalgia and it never occurred to me to look for another culprit for my symptoms.  I even ignored the ever-increasing abdominal pain thinking it to be related to the fibro, so I just toughened up and tried to bear up under the pain.

“Man is also rebuked with pain on his bed and with continual strife in his bones” (ESV Job 33.19)

Something that anyone with fibromyalgia can completely relate to, pain is just part of every day living and if it cannot be ignored, life would come to a stand still.  Since being diagnosed with NET cancer, I have undergone a radical surgery that the oncologist was certain would alleviate my GI symptoms, and, so far, that has not been the case.  I still suffer from IBS symptoms and a slow GI tract.  The doctor has prescribed several different medications to no avail; again, where does NET cancer end and fibro begin?  It is a tough question to answer.

The bottom line is that I no longer know what to do or what to think.  I do not want to call my oncologist with every ache and I’m not sure what symptoms to share and what symptoms to just count as a part of every day life with chronic pain.  Trying to balance each is exhausting, overwhelming, and even depressing.   It is times like this when I’m not sure which doctor to turn to, that I know I can turn to Scripture for answers. Throughout my journey with chronic illness, the Bible has been my first line of defense on days when I feel like I cannot possible walk another step. It has been on days when I am dry, that I feel my soul being refreshed and uplifted.  God’s word never ceases to bring healing to my bones, hope to my heart, and restore my faith in the goodness and mercy of a benevolent God.  In Revelation, He promises to:

“…wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away” (ESV 21.4)

This pain is only a temporary condition and will not be carried into eternity.  Jesus’ resurrection has secured for us that victory over the decay present in this fallen world.

One of the most reassuring aspects of the nature of Christ is written in Hebrews:

“For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin. Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need” (ESV 4.15-16)

Christ faced intense pain through his crucifixion and was able to bear up under the pressure.  During that ordeal he never sinned in what he said and as a result we can come before the throne of God to receive much needed mercy and grace in our fallen condition knowing in confidence that:

“…the sufferings of this present time are not worth comparing with the glory that is to be revealed to us” (ESV Ro 8.18).   

When I was first diagnosed with fibromyalgia, I could not come to grips with the passage of James that states I should consider it pure joy when I suffer trials of many kinds.  How on earth could suffering result in joy? It runs counter to everything I know as a human being, for pain is bad and Jesus came to wash away suffering and bring healing.  For years I thought that something was wrong with me because I did not experience total healing from my chronic pain and instead ended up being diagnosed with stage four NET cancer.  There must be something wrong with my faith to end up in such a predicament. It has only been recently that I have realized that my lack of healing has nothing to do with any lack of faith on my part, but with God desiring to give me the greater gifts.  The passage of James reads:
“Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing” (ESV 1.2-4).
Through my trial, God is perfecting my faith, bringing me to the place he needs me to be in order to feel the fullness of his blessing.  These trials are bringing me closer to God in faith as I rest in him to pull me through.  I am learning that it is not by my own power that I am able to cope, but through the strength of his majesty that I am able to overcome:
“But he said to me, My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong” (ESV 2 Co 12.9-10).
I may be dragged down by being a purple butterfly zebra, but I know that I can walk in victory over the illnesses that this fallen world has handed to me because God is fighting for me.  He fills my weaknesses with his power and gives me exactly what I need to face another day filled with chronic pain and fatigue.  He is bringing me to places I would have never ventured to go had it not been for these illnesses and the life changes they have required.  It is possible to stand victorious despite not experiencing total healing because God has not finished with the great works he desires for the lives of those who love him.

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