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Is it the trauma or is it stills trying to break in?

It’s been 6 days since the horse incident. After the event, I slept 14- 17 hours a day. I did force drink fluids, some food then exhausted and back to sleep. I went to see my beloved horse today and my trainer was very cautious and attentive. She rode him 1st and then I did for 20 minutes. I miss him so much. He is such a good boy. I miss my mini horse too and, like my arabian they are both in the best care a horse could have.

I get so fatigued SO quickly. I know my potassium was critically low as well as magnesium and sodium. I have been drinking electrolytes. The normal feeling only lasts about 40 minutes, then so tired.

My husband felt a cozy dinner out at one of our favorite places might increase my appetite. It just made me feel queasy.

Then the chills started. UGH☹️. This makes me wonder if all the fatigue and loss of appetite, nauseous feeling is the stupid dragon trying to make an appearance. “NO!! NO!! You are not invited you stupid beast! Stay away!! I’ve suffered too much this year already.”

This all makes me very sad. It’s Arizona and I’m wearing leggings, thick socks, a T-shirt and a heavy sweatshirt. Not good. It’s 7:15pm and I’m going to bed now. 😞

I have too much that is very good coming up in the next month. I need my strength so badly.

Thank you for being there.

Prayers that you stay healthy and I get healthy.

Good night friends

 

When you can’t say no in an emergency situation but it may risk your life.

I didn’t feel that well when I woke up that day to begin with, but I went and visited my sweet mini horse in the hot Arizona heat.

I’ve only been off my meds for 90 days with the fierce instruction to AVOID ALL STRESS. Easy enough I thought.

Not feeling well after seeing my horse I headed home. But felt I should call the owner of the barn and tell her my horse needed some supplements. She and I spoke and I decided to make a u-turn and go to the tack store and buy and give her the supplement for the horse. She gave the supplement. And we sat down and chatted.

As we sat watching my mini horse and the mini goats, we jumped to our feet to see her prized horse was going into colic (a life threatening situation).

It was hot out and I had to stay and help, as she was alone. She called vet offices as I walked the horse as it was trying to lay down. It took all my strength and tears attempting to keep the horse on its feet while she stayed on the phone with the emergency vet clinic. I was very upset, overheated. I had never witnessed this before and the fear terrified me.

She stayed on hold, frustrated and scared we made the decision to haul the horse in. She instructed me to stay in the horse trailer with the horse and not let it lie down or risk it hanging itself and dying. I had never been in such a situation. I was crying and over heated and terrified. We drove and I screamed and begged and pulled at her horse while it buckled to its knees. I cried sobbing tears in the hot trailer hoping this horse would not die. I was overwhelmed and drenched in sweat due to over 105 degrees in the trailer. The poor horse wrenching it’s neck in pain and slumping against the trailer wall. I used all my strength and screamed “NO!!!!!! Don’t DiE!!!! We are almost there!!!! PLEASE Hang on sweet girl!!’ We are all almost there!!!! Please DONT die!!!!

My heart was racing as pouring sweat stung my eyes. Trying to stand as the horse trailer moved on the road I was sick to my stomach.

Finally we arrived. We got the hose out and the horse buckled again and tried to collapse. We screamed for help as techs and vets ran out to save her. Finally she was in the trauma bay and getting help. In shock I walked to the bathroom and threw up clear fluid 3 times. The floor was cool as I lay down and tried to keep from passing out. I knew I had to hold it together. The horses owner was with her horse In the trauma bay. I called my husband. I told him I didn’t feel well.

I watched them put tubes in the horse and felt ill. My husband arrived and he had me follow him home as I drove my car.

We arrived home, my head was pounding. My heart was racing and my chest hurt. My husband said I stared into space and didn’t talk. He put me in the car and to the emergency room. I was suffering from shock, heat exhaustion/ heat stroke. We did tests all night. I didn’t have a heart attack. But the emotional trauma of the situation was not good for me. My brain overheated and I was extremely low in electrolytes.

It’s been 3 days days now. I’m still extremely exhausted and sleep 17 hours a day. This is scary since my flares start with so much sleep. I pray I am not entering a flare. We never know where a flare will end up.

Please lord spare me from a flare. I just ended my meds 90 days ago. I never meant to get in such a traumatic situation. But once it begins you can’t say no.

Stress kills.

I’m so exhausted. I hope I can bypass a flare from this extreme stress.

Please friends stay healthy.

Sometimes you can’t walk away from someone needing help, but with our rare disease it can cost us our life.

Stay healthy my friends 🙏🏼

 

Dear Stress, I hope you step on a Lego

The last flare ended and I got the OK form the MD on June 14th, 2019 to stop the meds. YAY!!!!! Celebrate!!! I should have written about this then, but I was not sure if I could celebrate quite yet. And then after a month, I just felt fine and kept hoping that if I didn’t pay attention to any thought of Stills I could keep skating under the radar. Unfortunately, Ive noticed my tactic is, if I don’t think about it, this also means I avoid my blog, which is not good for me or anybody.

I know I have found great support with this blog and the Stills Foundation Blog when I was suffering at my lowest points, unable to walk, and function with this disease and near death. There were times I was so afraid of dying, the disease was not in control for several years. And this is how terminal thoughts arise from constant pain, and suffering. (But enough of this ). And then when things start going really well with my health and i get SO happy and I skip along like a dopey unicorn and I forget to blog. Im sorry 😦

However……things are always going well, until they aren’t. As AOSD sufferers, or as victims? I usually feel like a victim with this horrid disease. Ambushed out of nowhere.

But things go very well for a good amount of time until severe stress affects us. That’s the crazy thing about AOSD, stress can kill us. What a strange concept right. In this world of chaos, financial disappointments, personal relationships that start out fine and end up toxic, learning that friends are not really friends at all, just sorry puppets in a mascaraed, animals that are injured and needing emergency help. And this ridiculous, absurd heat of 110 🔥 in Arizona and saving a life.

This is stress. Some of it, I can avoid by just using mindfulness, other times mindful gets thrown out the window and my instincts to help activate and my tender heart must help. And in this horrid heat. This combination can kill me.

I slept 14 hours last night. The drenching sweats disgust me. Nothing worse than cold wet sheets, soaked hair and night clothes and shivering to a degree of hurting my jaw due to the shaking.

Ive never been the type that can walk by an innocent injured animal and just hope for the best. Nope. I dive in with my whole heart and do everything I can. When friends need help, Im the same way, only to find out afterwards, many times they are a selfish little crumb of a person and I just happened to have a heart and come to their aide. All off this takes a toll on the immune system. I can change this. I must change this to save my life. AOSD can kill. My animals need me. Mindfulness. Mindfulness. Where does it go when I need it most? Practice. Must practice.

The unfortunate thing about this disease is that we never know what the next flare will bring. I can handle the chills, chattering teeth, drenching sweats and fevers, rashes and joint pain. But, along with all this, yet there’s more. Sometimes it attacks the liver, the next time the lungs. One major organ is always affected. Its the heart that scares me the most. If it attacks the heart………..

I need to remove all stress. Yeah, good luck with that. I guess, all I can do, is be more mindful and celebrate each day (without the crazies) and be with nature and be with animals.

So if this flare doesn’t become a full flare and I caught it time, Im going to have a glass of wine and cheer “here’s to you stress! I hope you step on a Lego”

Stay healthy my friends

Claudine

 

Dare devil this time.

I don’t tolerate the methotrexate pills well at all. They make me nauseous. So I was given the shots to draw up on my own once a week.

My last visit revealed my labs were almost normal!! Yippee!! So I began my own taper with the methotrexate injections. Yup. It’s true. I am a dare devil. I feel great and I have more energy. I’m not requiring 12 or 14 hours of sleep anymore. I’m actually doing well with 9.

I do not recommend this to anybody in a flare. I’m just reporting that after many months this feels right.

It’s been quite a few years since my last flare. I am estimating 7 or 8 years. What a sad day it was when I flared after so many years.

But upward and onward !!

Stay healthy my friends,

Claudine

 

Living with a disease ‘almost’ in remission

This is not a sad post. It just is what it is. Having a rare disease is like this. Rashes have slowly disappeared , strength is coming back,, I’m getting out more and doing more , carefully. People see a happy, joyful and cheerful person. They have no idea how much energy it takes. A constant weigh scale of what I want to do and what my body will allow me to do. Choices I am constantly weighing. This is why I decline many invitations. My energy makes me parcel out carefully my energy for daily tasks or risk a terrifying flare, extreme pain and many medications that make me sick along with many emergency room visits to stay alive. But still, this is not a sad post, life is beautiful I have so much love and I stay joyful, happy and cheerful. So extremely grateful to be alive every single day 🙏🏼❤️

Stay healthy my friends.

Claudine

 

This Too Shall Pass, but the pain is so bad until it does :-(

I have been procrastinating. It’s a strange feeling of “if I don’t go to the web page, maybe I can post something more cheerful. I am sorry I waited. Things has been awful. But, I’m glad to be alive, so I guess this balances things out. My flare on 1/28/19 was a doozy.

What a nightmare of a flare. The symptoms came on like wildfire. The telltale cough. The feeling of freezing, although everyone else is warm, the evening arrives and the drenching sweats and chattering teeth so hard I feel as if they will shatter. The jaw pain from the spastic muscles of chattering.

The emergency room visit and IVs and the explaining and explaining, blah blah blah. They called my specialist and we started the labs and Medrol.

But why is the human mind like this ? Why do we think if we ignore it, it will go away. It’s a strange phenomenon.

It’s been 2 months. I have flared twice during this time.

One week when I just got sick of the Medrol and I said “SCREW THIS!!” In more colorful words.

I was fine for 24 hours and then……WHAMMO‼️‼️‼️‼️‼️I had never had a flare kick me in the ass so hard !

My fever went sky high -(102) I was vomiting repeatedly and had chills and chattering teeth and joint pain. And the strange thing, my eyes were leaking yellow pus and were so swollen shut I couldn’t see. I was terrified I was going to go blind. The other additional symptom was a raised, very red and pointed rash appears. NOT the typical rash. It was firm rash, very isolated to hips, thighs and abdomen. It went away in 2 weeks but it was odd.

I started the medrol and the MTX again and have not had a huge repeat.

Although, I cough when I get very tired and I feel like I’m going to collapse and cry from fatigue. The intensity of the fatigue is whole body pain. I drag my feet. I cry.

It sucks, but I’m alive. And if you’re reading this, then you are alive too.

And I am so glad you are here with me.

Well, time for the methotrexate injection. Live on. Love on.

Stay healthy my friends,

Claudine

 

Trying to get a flare quickly is a joke

The flare started on January 28th. It came on so fast it was strange. It was like the dragon said “I’m back! And you better watch out !”

I have been on the Medrol for 6 weeks now and the methotrexate injections. It’s working well.

I am feeling better. But, foolishly, one day I was feeling fine and thought, “I must have caught this flare quickly and I can stop the meds!!! ‼️WRONG‼️. Very dumb of me. That evening I had symptoms that were so intense I was scared. The sweats and chattering teeth woke me up and when and I stood up, I started vomiting and coughing so violently.

The vomiting turned into a dry heaves nightmare. I could barely catch my breath. During this the sweat poured into my eyes from my drenched sweaty hair, burning my eyes. The intensity broke the blood vessels in my eyes. My husband held me but I felt awful that he needed sleep to be at work early. He is so supportive and loving.

Eventually the episode stopped. I was so weak. I sat in a chair I keep next to the shower due to the fatigue I have from showering. I get exhausted very easily.

I’m very diligent now. I have no desire to repeat my dumb idea of “Hey! I must be cured now!!” Only 2 weeks into a flare 🙄.

So, I know, this too shall pass. I just wish it would hurry it’s stupid self out of here.

Stay healthy friends,

Claudine