The Plague

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The Plague
By Ang Johnson

Can I even be honest
About whats plaguing me…
Without an eye roll or some cacophonic speech?
Because no one seems to listen when I bring up my disease.
Each day is full of so many unknowns
I try so hard to take control of my symptoms.
I smile and nod, so don’t ever talk “depressiom”
or else when I do, they’ll all second guess it.
But it’s the fact that I can’t get help that makes me depressed, no cure
Yet I’m still hopeful that someday this pain will come to an end.
My bones ache, and sometimes I seize.
I get anxious as I think about the inflammation inside me.
But evenso, I can’t get anywhere because as a lyme patient
they won’t see me.
So tens of thousands of dollars I’ve spent just to fight
To try and get back the last five years of my life.
Back to where I had dreams and goals, no fear.
When I had good cognition and could trust my legs with the weight
they needed to bear,
When I had the coordination to dance.
Now the only dance I do is in circles- hitting a wall,
Looking for answers in the system and finding none at all.
I thought long term antibiotics could be prescribed for acne?
But for an actual bacterial infection… it’s not okay.
Instead it’s okay to let it grow until we die from this disease?
Or until we get misdiagnosed with other syndromes that you can’t
effectively treat.

I saw a specialist once, and he said to my face,
“Even if you do have lyme, there is nothing I can do for you”.
So with a quick response I said, “I guess I will just get sicker and die?”
Silence fell in the room.

So please continue.
Don’t talk about depression, instead lets just oppress it
because if we talk about how this illness tests our faith.
We’ll get labelled “psychosomatic”.
Don’t talk about the suicides, due to the system failing to help.
That’s not to mention what lyme disease in the brain
makes you want to do to yourself.
The rage, the hormones, the forgetful brain.
The twitches, the tremors, psychosis, anxiety,
fatigue, even being wheelchair bound for many who are lame.

Speaking of which I guess I should stop talking.
I’ll continue my fight, you’ll continue your mocking.
Dancing round in circles, something has to change.
The blood that has been shed from this disease- deserves
to have a name.

My Feet are Slipping…

Psalm 94:18-19

When I thought, “My foot slips,”
your steadfast love, O Lord, held me up.
When the cares of my heart are many,
your consolations cheer my soul.

I just want to Say a big thanks to those who have been keeping me in their thoughts, prayers, and even pocketbooks.
I just want to recap on how treatment is going. It’s almost been 9 months straight that I’ve been on treatment now for late stage neurological lyme disease, babesia, bartonella and anaplasma phagocytophila. I can’t even believe it. It all seems like a bluur, a crazy ride filled with moments of highs and lows, victories and setbacks. Smiles, and nights ending with many tear-stained (thanks mascara) pillowcases. I remember in the beginning, everything was so scary. The nights I would wake up gasping for air, have horrid heart palpitations, vertigo, nausea, inability to stand for long periods of time, have to use my wheelchair, have horrid pain, spasms, blackouts, and see…all those things used to terrify me. I remember going to bed at night, expecting not to wake up the next morning. But, I’m still here. But now, I don’t scream when I’m in pain any more, or cry my head off sobbing uncontrollably if I can’t breathe-instead, now I just wait patiently, and silently for it to end. Sometimes tears still fall in the silence as I still try to hide my pain from people. But I only do it because I don’t want to complain about something people don’t understand or make them stressed.
In a way, I’ve gotten so accustomed to certain symptoms, that it’s almost like I’ve made a new friend, rather than an enemy, because I wont ever know which symptoms will be cured and which ones might stick around (because of damage also known as post lyme syndrome).
On a positive note: Slowly but surely I am getting better. I don’t know how much longer it will take to get back to normal but I am finally optimistic about being ‘cured’ of this horrid disease. At first when I started treatment I thought that being ‘cured’ was something that seemed impossible, but now as little by little I get better, I finally feel like I may get my old self back.

Now the negative news: My disability has been cut off through my insurance company, so now I have no income to pay for my meds/vitamins and other bills. I’m still not well enough to go back to my job, so I would appreciate every ounce of prayer that you can muster- to pray that God would provide. On top of being ill, stress can aggrivate my symptoms, so I am trying my hardest to trust in God throughout this thing and not freak out. As of this point, I feel like my feet are slipping, yet somehow I’m still standing.
So prayer that God would provide for my medical treatments, government disability, and for God to intervene with my case workers from my insurance company that stopped my disability (they haven’t even written me a formal letter saying that it’s been cancelled, they just stopped it). So bills are piling up, and funds are zip.

I’ve also started new treatment for “fibromyalgia” and had to stop it. Again. My air hunger and heart issues have come back, and I’m attributing it to the new med which can cause those side effects. I’ve also been feeling ‘ill’ in general since being on this med and I think it’s because it supresses the immune system, which in turn lets other things reak havoc in the body.
I also have a bunch of other scary health things acting up, so long story short:
I still need lots of prayer. I have a specialist appointment at the end of April, so hopefully I don’t have any more negative news.
But, God isn’t done with me yet. Apparently there’s still work to be done. And Like Paul said, to live is Christ and to die is gain.
If I live, it’s only because of Christ and his miraculous works, and if I die…that would be great because I get to be with Christ.

So let my life be a reminder to you that God isn’t done with you yet either.
I’ve made so many mistakes but he still pursues me and loves me. In the same way, he loves you.

xoxo.
Ang

All signs point to God.

Some thoughts:
Sometimes I think that God allows for us to be in situations that seem hopeless, so that when we see God’s hand of providence we are deeply overjoyed and grateful from a place that otherwise would not rejoice in the same way, if we didn’t endure those hardships.

Without hardships we don’t appreciate the way God chooses to bless us in our times of deepest need. It’s only when you’re starving that you appreciate food in a deeper more meaningful way; In the same way, when we’re in the desert it is there that we realize how much we need God and his intervention in our lives.

I looked up providence in the dictionary and really liked this definition
prov·i·dence
a manifestation of divine care or direction.

That is all.

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If you’ve read my last post you would know I wasn’t in the greatest head space recently. I was overwhelmed with the severity of my medical issues, finances, and life…. but the providence of God moved in my life in a crazy way. Brought about someone who has been dealing with the same health issues as myself. Linked me up with some doctors out here so that I don’t have to go to the United States for treatment! Which means an ease on my mind in regards to finances. So in small steps, little by little things are looking up in that arena so praise The Lord!

My health seems to be getting worse. I’ve had 3 seizures this week and have had constant bouts of blackouts, dizziness and yucky cognitive issues. I’m not going to lie, I’m scared. And I think that’s my first time admitting it. I make morbid jokes about death and sickness, things I go through, like the other day I told my mom and sister to nick name me “beef jerky” because of my seizures and random spasms. (Get it? Har har) joking makes this craziness seem a little less scary when I can laugh about it and get others to laugh. (Except they usually don’t. Awkward). But in reality I’m scared for treatment because I know that I’ll get really really really sick on antibiotics before I get better. I know people who are rushed to the ER and I’m not looking forward to that. But God will be with me through it so I have to remember that. 😦 But, really those little suckers gotttta die!!

Much love.

The suffering of sickness and the suffering of persecution have this in common: they are both intended by Satan for the destruction of our faith, and governed by God for the purifying of our faith… Christ sovereignly accomplishes His loving, purifying purpose, by overruling Satan’s destructive attempts. Satan is always aiming to destroy our faith; but Christ magnifies His power in weakness.
-John Piper
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