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Evil Vistors

Last night, November 28th, 2008,  my husband and I were sitting on the couch having a conversation around 6:30 pm.  We were talking, small talk, about decorating our home, some pets we will get once I am better, and anything to keep my mind off of the marker time my disease comes on each night..   It has been weeks that I have been outside, I am so weak lately and I look foward to talking with my husband after he returns from work.

One thing you need to know I have the most wonderful husband in the world. He is loyal, loving and a true gentleman. Despite the past months, and my health situation, his love does not waver or change. I married a great guy.

As we are talking, we both glance at the clock. I didn’t say a thing, but I know what the glance at the time means. 7:00 is approaching and my pain and tears will start due to the torture.

At 6:50 the first 2 evil visitors arrive. I refused to give them my attention. I keep my head straight ahead, keep talking. I pretended they aren’t even there. They arrive so innocently, one wearing red, one wearing pink. They just sit, quietly.

6:55 a few more  evil friends show up, they act like they don’t know the each other, yeah right, they are all evil friends. It’s a conspiracy. The new arrivals sit at other areas, never all together at the same time. Starting on my arms, then my neck, thighs & torso.

 By 7:00 the whole belligerent gang arrives.  All wearing red, some of them puffing out their chest to stand out. My arms and legs and body are now covered with big red rashes.  Some are raised, look almost like hives. Butthey don’t itch. The  glands in my neck are starting to swell and I can not swallow well. I am starting to shiver from the fever coming on. My joints are starting to ache. Soon I will not be able to walk well to the bed.  I am tired of them ruining my evenings, ruining my life!!!

 I roll up my sleeves staring at the red rashes materializing before my eyes, I cry out, “I’ll take you on!!    Leave me alone!!!!!   You want to fight! Come on let’s fight!!   Get the hell out of here!!

But, truth is, I can handle them being around. They are not as bad as the horrible guests they invite every night. But by the time the worst evil visitors arrive, I  have no energy to fight.

At 7:09 one of the irritating evil visitor arrives. Ice Man. Sometimes he arrives alone, but always after the bright red and pink evil visitors arrive. Tonight he brought his mean side-kick. Side-kick always attacks my throat. He comes in, turns down the thermostat so cold, that I get chills and shake. The shivering is so bad that my husband must hold me, bundled in a tight blanket, sometimes to keep me in one place. I can’t get warm, the coldness comes on stronger and stronger. There is no warming up. I shake from the fever now reaching 101, 102 up 103 degrees. Eventually, fatigued from the daily visit, the tears of begging them to leave, and pure exhaustion, I go to bed. I pile on the blankets. I am shivering. My joints ache. My teeth chatter for hours. My jaw muscles hurt, my neck muscles hurt from the shaking.

7:20 The cruelest visitor has yet to show up, but he will. I call him ghost. He arrives, invisibly,  with his hammer, every night. I am sure one of the evil visitors has called him to show up. He is probably the life-of their sick party. The veil of the cruel visitor, the ghost is already haunting me. My muscles ache. My joints hurt where I have been struck before on previous nights. My wrist joint is swollen like an apricot, my left ankle is swollen the size of  an egg.

Where do these cruel, evil visitors get their sense of humor? Invariably, one of the red spots always finds it “funny” to wait until I’m asleep. Until I am finally exhausted  in a slumber. But I don’t stay asleep long. I know what is coming next. I envision them, all of them, the red spots, Ice Man, Side-Kick having a blast at my expense. I fear the same routine every night when one of the red spotted evil guests, gets drunk with fever, a lamp-shade on his head, laughs as the ghost uses a hammer to strikes down on one of my joints.

I bolt up in bed, I awake crying holding whatever joint they think it’s funny to hit. I watch the joint get red, swell and stay so painful the rest of the night. Every turn I make, every position I try to adjust to is painful. Extending my leg straight takes 3 minutes becasue of the pain. I cry in the dark . My husband, awakes, holds me, he feels so helpless. I try not to wake him anymore.  I suffer every night.

Every night, I have interrupted sleep. I cry for hours from the pain that does not allow my shoulders to move. Sometimes so painful, I can not feed myself or lift my arms to put on clothing.  I cry like a small child on the edge of the bed each morning before I can even stand up due to the pain.  I have lost so much weight now. It has ben 3 months of constant torture from this haunting illness. I vomit 4 -5 times a day. I cough around the clock.

I don’t like night-time anymore. I fear sleep. I trick myself into avoiding 7pm every night. I make myself busy. I engage myself in a task. But it is like the evil vistors have their alarm set on repeat each day.

By morning, almost all of the red spotted evil visitors have left. Ice Man and Side-Kick usually leave after mid-night. I guess they have other nice people to torture. The cruelest evil visitor, ghost, always leaves his new mark. My knee, my elbow, my shoulder or wrist will still be inflamed by his tasteless humor.

But, I am just beginning to fight this battle. These evil visitors have been making their appearance since Sept 9th this year. I am so tired of this, but I will fight my hardest until my life is given back. I am NOT their playground!!! I am not here for their twisted, demented “happy hour” at 7pm. I will search for natural fighting tools. I will stock my arsenal with a whole array holistic weapons of mass destruction. I will starve them of nutrients and build an organic wall they can not penetrate. I have just started to fight. And I will win.

I pray everyday, please God, just help me find a cure. Please  Lord tell me what I have. What is happening to my body?? What is this gripping disease??

 

3 responses to “Evil Vistors

  1. Mitzi

    May 4, 2018 at 10:16 pm

    I am sorry for your pain. You are telling my story word for word. After being hospitalized over 30 days I was diagnosed ( 28yrs ago) with Aldult Onset Stills Disease.

    I will be praying for God to direct you to a specialist in that field.

     
    • stillsdiseaseblog

      May 13, 2018 at 2:38 am

      Thank you Mitzi. I’ve had a roller coaster ride with this disease, but for the last 5 years I believe I’ve been in a remission.

       
  2. shirley connelly

    November 24, 2017 at 2:21 am

    I,m sorry your suffering so much. I hope you find something to help you. I feel that I have a lot of the same things your going thru, but not as bad. I don,t have the fevers, I have the chills and I,m always cold, the top of my thighs feel like there all wet, then they go very , very cold a really strange feeling, the doctor told me that its nerve damage. I have a rash nothing like you have. But when I take a shower and the water hits my chest and neck its very painful. I have all the pain in all my joints and nerves all over my body. my pain usually starts at nite to. I,m up and down all nite to. its either the knees or the legs or the ankles or the sciatic or the back or the neck,the pain is everywhere. some times I feel like some one beat me up all day and all nite. the mornings I can’t
    use my hands and my wrists have a lot of nodules all over, a lot of pain. I use a lot of different ointments and meds but no strong drugs. I use extra strength Tylenol 500 mlg. I think I have RA and nuropathy and fiber myalgia. my insides feel like there all swelling up, and twisted when I bend down. I had two back surgeries this year. I hope I get better to. it just keeps getting worse and worse. I would really like to know what I have to. good luck to you. s c

     

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