A Monster Within Me

Today I have been sick for 9 months.

Most of the time when I tell people how long it's been, people give me a really weird reaction. They extend pity and sympathy, which is kind, but it's not what I'm looking for. I see this as a milestone; while I'm not happy about my circumstances, the joy of the Lord penetrates the worst of circumstances. He redeems the worst people and the worst trials to make His beauty known. The nine month mark of being sick is evidence of that to me; I see not nine months of trial but nine months of grace.

My life has completely changed since getting sick. It started with a stabbing pain in my left foot in the way home from a road trip with friends, an unusual and alarming pain that wouldn't go away. I was then diagnosed with a neuroma. After a while it spread to two, three...six neuromas, an unheard of diagnosis. I was diagnosed with tarsal tunnel, a pinched nerve in my ankle. But the pain spread and became unilateral (both feet), then soon I had unilateral carpal, cubital, and tarsal tunnels--pinched nerves in both of my wrists, elbows, and ankles, respectively. Another unheard of diagnosis. It spread to my lower back, arms, and made half of my left hand numb. I was tested for frightening and untreatable autoimmune diseases. We ruled out rare conditions that cause a painful and short life. The pain got worse and continued to spread--my shoulders, my neck, my face. The doctors are stumped.

Daily life looks completely different now. It's structured around taking medications, putting everything on hold for doctors appointments, and canceling weeks of my life when I'm in too much pain to get out of bed. The braces around my back, elbows, and wrists restrain me like this disease has restricted my life. I know all too well the side effects of medications: getting dizzy and lost on an elevator, days of nausea, the cripling effect of brain fog, drunkenly falling out of bed, feeling like I'm losing my mind. Constant pain serves as a constant reminder for my imperfections.

I know the fear of not knowing what's happening to my body, if I'll ever be well again, or if I'll ever live a normal life. There's a monster inside of me, and I don't know its name. Is it eating me away? Or are the remedies I use to make it through each day what are destroying me? Should I fear liver damage from my medications or long term nerve damage from this disease? Should I fear for my life?

I hate this monster. I hate what it has done to my life. If I could kill him without destroying myself, I would.

But when I don't know what to fear, I learn not to fear.

I have lost many things from being sick. Opportunities, comfort, friendships, freedom, the ability to perform simple tasks, even my handwriting has changed. I say all of this because I have learned the following:

A thorn was given me in the flesh, a messenger of Satan to harass me, to keep me from becoming conceited. Three times I pleaded with the Lord about this, that it should leave me. 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. (2 Corinthians 12:7-10) 

I am incredibly weak, in some of the most practical and obvious ways. Some days I am too physical weak to stand and must be carried to the bathroom. Other times my medication changes my ability to think so drastically that friends and family must take care of me, help feed me, and walk me across the street because I am too sick to notice the oncoming cars. I go days, even weeks feeling like a stranger with a different personality. Even in the midst of this trial, I still struggle with turning to God but instead react to pain with anger and sin--I am so spiritually weak in the simplest ways. And goodness gracious am I emotionally weak, like I never knew I could be. I feel frail and worn out, I'm exhausted and sometimes feel hopeless.

I am not complaining. I am boasting.

God has allowed this to happen. This does not make me angry at Him. I get angry sometimes that I am sick, but He has continually shown me that He is still good. He allowed me to be sick because somehow, in a way I cannot understand, me being sick for 9 months is what glorifies Him the most. I hate the monster that reminds me of my fallen state and the imperfections of this world. My eyes are opened to a new level of suffering that so many experience much worse than I can comprehend, and I long for the return of Christ when sin and evil and pain will end forever.

I hate this monster, but I love the Father who uses even the worst evil to teach us of His love. I now know what depending on Him for daily bread feels like. I have learned to not trust my own plans for the future, whether it's plans for the weekend or the summer or my life, I never know what my health will be doing. With so many misdiagnosises and now being undiagnosed, I have learned not to lean entirely on my own and my doctor's understanding but take comfort that God knows everything. My Maker holds my health, and I'm learning to let that be enough.

I've prayed Psalms from the inside of an MRI machine. I've joked with nurses while they draw my blood and hook me up to IVs. I've almost fainted in a professor's office. I've been carried through a McDonald's. I've had to ask for help. I've had to let others love and serve me. I've seen people fail me and had to forgive them.

This is not the life I would have chosen, but there is a Savior who has chosen me for it. There is a peace that passes all understanding. I am as undeserving of this peace as I am of the grace that gets me through each day and the love that surrounds me and overflows my cup.

It's been nine months. Nine hard months, but nine of the richest months I've ever experienced. This isn't the anniversary of the day I lost something, but the day God moved my life in a direction I hadn't anticipated. As a Puritan prayer puts it:

"I rejoice to know that all things are at Thy disposal, and it delights me to leave them there."

Resting in the sovereignty of our Lord,
Happy 9 months.

"Sometimes I Wish I Had Cancer."

I found this article today and it nearly brought me to tears. I can relate to nearly every one of these points, and every time I've tried to explain it I just can't express it right. I'm not saying this to grasp for attention, I'm grasping for understanding.

I know many people have cancer, and it is definitely a dark and terrifying time. I'm not downplaying the terribleness of cancer, I just hope to help people understand that cancer is not the only or ultimate struggle. So many people experience the same sense that this article is expresses--that if only it was cancer, people would have some basis to understand.

And now, an article by another woman experiencing an invisible, misunderstood illness:

How many times have I heard people say "it could be worse, you could have cancer"... or anything of a similar vein.

... It drives me nuts.

One particular occasion I remember: I was speaking to a head pharmacist, someone with a degree in pharmacology, and I was inquiring about finding an effective pain killer for severe chronic neuropathic pain... (*1)

My specific question was "I'm currently having to use oral morphine, it doesn't work very well, but the injections do okay, what can you tell me about the patches?"

The response I got? I kid you not:

"But that's really for cancer patients"...

So this wont be the first time I've said this. And it probably wont be the last either.

Sometimes… I wish I had cancer.

I mean, looking at it - and I suspect much, if not all of this, is true for others too - just kinda makes why quite obvious:

Commonalities:

• I've got a shortened lifespan.
• If left untreated I die, pretty quickly too.
• I'm in immense amounts of pain on a daily basis.
• I'm exhausted with fatigue pretty much all the time.
• I have to take tons of medications, many of which make me sick.
• I feel nauseous pretty much most of the time no matter what.
• I have to attend an unpleasant treatment solution for several hours multiple times a week. (In fact, at my previous clinic we were next door to the chemo unit & shared a waiting room. Oh, and it also makes me horridly sick)

Differences:

• I don't have a possible cure, remission or recovery (Yes, if you are lucky enough to 'survive' cancer, you live the rest of your life with the possibility of a relapse or recurrence - but at least for awhile, you get your life back)
• I constantly have to explain that I am sick to people.
• I have to explain how I'm sick to people (sometimes even medical staff) and what that means in practical terms.
• I have to answer endless questions from people (many of which are so personal they actually have no right to even ask them)
• I have to re-explain things to people who are ignorant, don't understand, don't listen, or don't careabout my illness.
• I struggle to receive adequate treatment for my pain.
• I have been accused of drug seeking when trying to just get my meds.
• I have been accused of taking illegal drugs when I take only necessary pills. (Taking unnecessary ones could be incredibly dangerous for me - even if they're prescribed by medical personnel, I've nearly died from a medication reaction)
• I have been accused of overmedicating myself, when I'm usually careful to the point of under-medicating.
• I have had my needs ignored because my condition is "not serious",  not bad enough/that bad". "all made up", "psychosomatic", "just play acting", "being made out worse than it is" or "isn't real". Sometimes this has actively endangered my safety, health & wellbeing.
• I have been told "You're not really sick" or "You're not disabled" - last I checked I am unable to hold a job or pursue an education.
• I have also been excluded from things I should by rights be allowed for my disability, because I'm not "really disabled" or "disabled enough" or "don't look sick/disabled" - because I'm not in a wheelchair, blind, deaf and in my teens & twenties, obviously not elderly.
• I get asked "when will they cure it?" or told "oh, doctor's will fix that"... do people not understand what the term "chronic" means? In case they don't and are reading this: 1. Persisting for a long time or constantly recurring (which usually means the rest of your life), 2. Having such an illness, 3. Long-lasting and difficult to eradicate...

• I get told my meds make me worse...
• I get told I'm not following my treatment otherwise I would be better.
• I've been told I "shouldn't dwell on it" or "let it control me"
• I've been told I deserve to be sick.
• I've been told that if I were more moral/religious/positive/outgoing/insert-form-of-predominant-groupthink-mentality-here I would get better or wouldn't be sick.
• I've had people tell me that if I just did/tried XYZ it would solve all my problems. (Often XYZ is either something that I did try & it didn't work, or completely against my medical recommendations, sometimes it's just ridiculous)
• I've been accused of not wanting to get better or choosing to be sick.
• I have to justify practically every moment of my life to someone.

But mostly, because no matter what I do or say, no-one who isn't in a similar position will understand or at least accept & try to understand my situation properly or even to the same extent as people do when you say those three little words: "I have cancer"

So sometimes... I wish I had cancer instead.

***

1. For those of you not up on the terminology from everyday use, neuropathic pain means malfunction or damage of your peripheral and/or central nervous system, that includes your brainstem & spinal cord. If you've ever had shingles, then you have a pretty good idea of what I live with on the average day, on bad days, it feels simultaneously like being electrocuted at either odd intervals, or continuously, often along with a severe burning feeling. This is in fact, exactly the type of pain that a cancer patient may experience.
2. It's probably relevant enough that I should mention: Before the exchange, I specifically told her not only about my general neuropathy, but that my main concern was my Trigeminal Neuralgia, or if you've ever heard of it, it's probably by it's more common name "The Suicide Disease" - so called because as it has been described as probably "the most painful affliction known to mankind/medical practice." and left inadequately treated (which is sadly quite common since it is frequently misdiagnosed, usually unresponsive to anything except really high doses of serious painkillers: morphine injections may or may not work) otherwise happy & healthy people have literally tried (and quite a few succeeded: multiple attempts tend to have a higher success rate) to commit suicide in order to make the pain stop.

Water is the New Sidewalk

The past six months have been phenomenal--I've learned so much, depended on God in new ways, made new friends, transitioned to a new phase of life, and grown up a lot. I love my life right now. 

About a week ago, I passed the six month mark on when a weird pain started in my foot. Since then the pain has moved to nearly every other area of my body; it has manifested in many different ways, I've been to more doctors than I can remember, tried more medications than I care to think about, and been tested for diseases I hadn't known existed. It's funny, though, how normal this all seems. Wearing braces, keeping track what of time I take what medication, limping, and planning out my days to avoid walking as much as possible is routine for me now. 

You can get used to doing what it takes to get by, but not the pain itself. I don't think you can ever get used to chronic pain--the stabbing pain with each step, the sudden sharp cramps, the numbness, the tingling, or the worry of noticing when something else is wrong. There are times when I feel almost hopeless--like my body is refusing to work, falling apart, shutting down on me and no one can figure out why. But I'm not hopeless, and I never will be. There really is a "peace that passes all understanding," a God-given ability to "rejoice in the Lord always," and a "joy [that] comes in the morning." 

Yesterday my pastor talked about Jesus walking on water and storms in our lives. He said that God allows storms for a reason, and when the reason is fulfilled the storm will end. He showed how when Peter focused on Jesus the storm was not important, and only when he his attention strayed from Jesus did he sink. Whatever the purpose of this particular storm, apparently it is not fulfilled. That is encouraging to me--I have learned so much already, and there is more yet to be learned. I look forward to the day when I can walk normally, run around and be goofy, not have to worry about having my orthotics and braces and all my medications each morning, wear whatever shoes I want, serve others instead of always being served, stand on my toes, prop myself up on my elbows, and not have to take breaks from sitting up to go lay down. But there is purpose for pain, there is joy in suffering, and every flare has that beautiful moment when I realize my pain has subsided. 

I've learned to depend on others. I've learned to discern when to ask for help when I need it and to suck it up. I've stopped caring about what other people think while I adjust my noisy back brace, limp, shake the bottle of Tums in my backpack with each step, look terrible because it took all my energy to get out of bed, and miss out on fun events because of my pain. Well, I should say, I'm learning to do all of these things. It's still a struggle, but one day I will get there. There is a time when the purpose of the storm will be fulfilled and the seas will calm. Until then, I will keep looking at Jesus and walking on water.

Well, limping on water.