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.

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Today.

Today I hurt. I can’t deal with this physical pain anymore. I just spent the past few hours crying and pleading with God to take my life.

Today I question my life like Job, and wonder why God would bring me into this world only to have me suffer.
I still wear a smile so no one sees the pain I feel- yet everyday the pain for me IS so real.
My heart cries:

Lord…take me”. Stop this heart, collapse my lungs…whatever. It’s already hard to breathe, so why won’t you just stop this bout of wheezing, my heart already is skipping to abnormal beats….so why don’t you stop it altogether? Instead you’d rather me feel every discomfort, every unnatural urge to gasp for air. You let me feel what it’s like to be so close to death, yet ironically you deny me that privilege. Every blackout, every seizure, every spasm, every studder, every fibre of my being is in revolt and it is destroying me. And if there is a posibility that I will have to continue to live an eternity like this….please God, LET it destroy me now.

I am so worn out.
-Your dying daughter.

Yaaaas! Another answer to prayer. Ehrlichiosis!

I’m over a month into treatment for lyme disease and something super cool happened. Totally an answer to prayer.
A piece of paper validated everything I’ve been fighting for the past few years. If you’ve seen the movie Under our Skin or checked out my LYME AWARENESS page, then you already know how the lyme tests govern whether a doctor will treat a person for lyme disease. You will also know how unreliable the ELISA test is, which ironically is the gold standard used to diagnose and treat lyme. But luckily, I have a doctor fully aware of this. So, he has given me a collection of ‘co-infection’ tests instead because apparently they are more sensitive and pick up more than the ELISA or Western Blot tests. This doctor that is treating my lyme knows that I have lyme based off of my symptoms and history, but the rest of the medical community won’t believe this to be true be because my ELISA in the past has been negative. But now, the tides are a changin! All because of a measly piece of paper. Waaachu talkin bout willis?
My labwork for my co-infections came back fine….or so I thought.
Apparently the labratory made a mistake and ‘re-sent’ me a new copy of my results.
I was reactive to anaplasma phagocytophila at 1:512!! That definitely is an abnormal level as my doctor informed me that it is quite high. Anaplasma phagocytophila is known to cause something called Ehrlichiosis, which is another tick borne infectious disease or co-infection if you will. YES, In my current situation getting diagnosed with a coinfection IS an answer to prayer because I have physical proof now that I have a “tick borne” illness!!!!

Coinfection is the simultaneous infection of a host by multiple pathogen species. In virology, coinfection includes simultaneous infection of a single cell by two or more virus particles.

This means, there is finally physical proof on paper that I can show to my doctors and specialists that I Angela, have a tick borne disease, and I have lyme- because I have a coinfection, that I couldn’t have gotten without the lyme! So yay!
PRAISE THE LORT! HALLELUJER!
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Anyways. Here’s some info on
Ehrlichosis/Anaplasmosis -check out this site!

Ehrlichia
There are two kinds of ehrlichiosis, both of which are caused by tick-borne rickettsial parasites called Ehrlichia that infect different kinds of white blood cells. In HME (human monocytic ehrlichiosis), they infect monocytes. In HGE (human granulocytic ehrlichiosis), they infect granulocytes. HGE was renamed anaplasmosis in
2003. Ticks carry many Ehrlichia-like parasites that have not been identified yet. It is likely that the lone star tick transmits HME and that the deer tick transmits HGE.

Symptoms of both ehrlichiosis and anaplasmosis include fever, malaise, headaches, chills, severe muscle aches, vomiting, anemia, lung infection, decreased white blood cells and platelets, elevated liver enzymes, seizures, encephalopathy, meningitis, confusion, ataxia, and cranial nerve palsy. Co-infection with Lyme can cause more severe symptoms. Death can result. Treatment is with doxycycline.

And just to let you know, I’ve had every single symptom mentioned above! I didn’t know that this could be the cause of my seizures and abnormal muscle movements! I love being able to piece things together. It makes me feel better if I can understand what’s going on in my body.

Anyways! I don’t want to ramble on too much!
Love yall to pieces!
hugs and smoochies!

Herxing SUCKS!

I’m still a newbie when it comes to Lyme disease treatment. I’ve been on antibiotics almost for 2 weeks and it’s been going better than I expected, at least I thought. And then yesterday happened.
Sidenote: Before you continue reading be warned that some of the following material may be disturbing to some people.
I would like to pay omage to the writer of the Dr.Seuss musical Seussical. There’s a song in the play that goes a little something like this: Oh the things you can think, oh the things you can think …when you think about Seuss”. Anyways yesterday I after my bad herx I began thinking “oh the things you can think when you’re herxing from Lyme”. Lyme messes up your brain man! In so many ways. I’ve heard of Lyme rage before but never experienced it fully in all of it’s glory and fury until yesterday. If I’m suddenly feeling angry because of the Lyme I usually hibernate in my room so that I don’t yell at people. Because I’ve done that to my poor mom before.
Anyways so back to the herxing.
So yesterday I collapsed a few times, had a partial seizure was running to the toilet to vomit, had a fever and chills and was having pseudobulbar affect reeking havoc over my emotions. I cried for hours for no reason again (like my last herx), but this time something scary happened. My brain felt like it was exploding and like there was this numbing pressure in my brain, so logically, (yeah, not so much) I began smacking my head with my hands to try to stop that feeling, the smacking turned into punching and not just my head, I began punching my legs, the walls, etc. And I honestly felt crazy and looking back, it frightens me a bit because I was at home by myself. Also thoughts of suicide came rushing in. I began thinking of smashing my head against the wall but I knew that I was being irrational so I went to my bed to lie down to avoid doing anything stupid. It was scary but I’m just being completely honest about it.

Then a few hours later a friend came to visit me, we watched some tv and he cuddled me which seemed to help me forget how sick I really was for a bit. It was probably the nicest thing anyone has ever done for me (If you happen to see this, thank you, you know who you are).

So I’m still not feeling the greatest, but I don’t feel as psycho as I did yesterday. I had a random bit of energy, which never happens, so I straightened my hair and went back to bed lol! That way if I continue to herx I don’t have to worry about my hair lol. Oh the vanity, I know….stupid.

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