FLARE.

I had my fibro clinic phone appointment yesterday and it was jam packed. Being on the phone for an hour is severely taxing, especially when fibro fog is horrible, as it has been lately. I've been talking on the phone often lately to my best friend. It reminds me of when we were kids and we talked on the phone everyday. It's been highly enjoyable, but I am remembering that just because I moved does not mean I have suddenly become without fibromyalgia.

The very first thing my doctor told me after I told him how well I did driving cross country, is that my body was going off of adrenaline.... all of it... the whole stressful time before the move, the drive, and even when I got here and acted like Supergal unpacking my room and all. Now that I am settling in here, my body is crashing.

Super.

So he said that I need to rest AS MUCH AS POSSIBLE, to stop whatever I am doing every 45 minutes and just sit, not to push through (which is the exact opposite of who I have always been... I am the queen of push through) and that conserving what little energy I have will allow my body to recoop.

Those instructions sound so damn easy. It's not. Imagine when you are sick with the flu or even a cold (since some people on facebook complain about a tiny cold I stuck this in here. It makes me sick. Can you PLEASE value that you are in good health? Can you suck it up for the 2 days your nose is running? Sorry to all genuine readers. I'm PMSing and in the worst flare I've had in ages and I cannot stomach listening to people bitch about their stuff, expecting me to listen for hours and when I ask for prayer or support they can't take 2 seconds to be there. I'm seriously done with it all. Tangent. Sorry.)and every movement hurts and you ache everywhere and you want a drink from the kitchen but your body won't let you go to the kitchen... or everyone else is laughing and chatting and can sit outside with neighbors or make new friends easily, but you can't. You are trapped in a sick body and it takes you at least 20 minutes to gain enough energy to go to the bathroom.

I was overly emotional yesterday. In a bad mood. Crying. I know it's primarily this flare. I have not had it so bad since before treatments and I know I will feel better once my body recoops. I am not naive enough to think I will be without symptoms.... but at least they will not be so consuming.

Back to what the doctor said: I have to be diligent about my diet. I told him I fudged up on the road and he understood that. He told me to get back on track. He gave me advice about my constantly clogged ear (the one that was infected). He said put a drop of rubbing alcohol in my ear after swimming and it will pop the tension and prevent more infections. I have to up my nitro to 4 full pills a day vs. the tiny amounts I've been taking. It will help with pain. My labs were not very good. My thyroid is now into hyperthyroidism so I have to lower the amount I am taking, and in my fibro fogged brain I mixed up the amount of Vitamin D I am taking. It took me awhile to build up to 15,000 a day of Vit. D. When I ran out of the 1,000 amount I did the math in my head with the 400IU pills and started taking 4 of those a day really thinking 1600 was more then 15,000. I completely did not even realize how much less I was taking.

My brain has been so slow and tired and confused lately. I cannot wait until that clears up. Even while driving (which is so freeing and fun to do again) I get tired or the lights overwhelm me. I now know that is something that I can only do when I am feeling non-flare like or else I can be a detriment to someone else on the road. It's so exhausting! Another lesson n humility. I used to get so irritated by people who were not confident drivers. It was so annoying, and now I have become the easily frazzled, overly stimulated driver.

Medications are being sent to me and when I get them I will be starting a Vit.C sodium powder vs. the pills for awhile. I am to fill up a stainless steel water bottle each morning with the meds and take a huge gulp every hour until bedtime. This is because I failed the VCS test in my eyes for possible mold and fungus issues. I could not afford the extra labs needed for this before I left CA but since I failed the original test my doctor is treating me for it anyway. I am to stay away from all must and mold. "Absolutely stay away" is what he said. I had to tell him that the last motel I stayed at reeked of mold.

He gave me some tips to deal with the pain and stress. "Heat is your best friend," he said. He reminded me to take warm baths with epsom salt to relax muscles, put a heating pad on my neck, and to do yoga type stretches everyday.

Last night I just broke down. I feel sick again. Like sick, sick. How I used to feel back at the beginning. Thank God I know what's going on, because not knowing was infinitely worse. I'm eager to start feeling better so I can enjoy this new chapter.

I'm tired of being taken for granted or being taken advantage of. These last 2 years have definitely taught me who I can and cannot trust, and has shown me what true fellowship is all about. It has taught me that family truly are our best friends, that rare is the one who is a genuine friend, and I know being in "isolation" these 2 years made the way for this place, this time, this sense of belonging nowhere and everywhere all at once.

I am not unhappy. I am blessed in EVERY circumstance. I am not regretful that I obeyed God and moved here. I am not sad. What I am is angry at disease, at the ignorance of people who use me and don't bother to learn what the hell fibromylagia is. What I am mad at is the tips to sleep better or wear a magical bracelet or all the tips that may apply to YOU but have no relevance to fibromyalgia at all. I am told people mean well and I disagree. Meaning well means you actually educate yourself about what I am going through. Meaning well means you give me the time that I give to you when you have gone through hard times. The times I text, pray or call or have sat with you (YOU is not anyone in particular) and now in my most broken season of life, you can't even respond. I am so sick of fake Christians and it breaks my heart too. I am sick of the pretense and so disgusted that I ever wanted to be like the leaders I thought were so Godly.

There is this intense rage I have in my chest today. There is such a battle to become a type B after being a type A my entire life. Even now.... after all of these months.... I still wrestle. I still mourn the loss of what I want to do in my life and the probability that all of the active things probably will not come to pass or may take a long time to get there. How to explain to someone who knows nothing of fibromyalgia except that it "causes pain and fatigue." NO, no, no. That is a flat out lie. What fibromyalgia does is sneak in, set up camp, and slowly sucks out every bit of who you are. It leaves you unable to hold down a job at 31 years of age, causes you to stammer and stutter where once before you were social butterfly, leaves you crying over something as silly as not being able to lift a laundry basket, and all these other things that people are so flip about.

I do not feel sorry for myself. I am strong. I am going to get this thing managed. I am diligent and I am waking up each day believing for the best, but I am also real. I don't believe in lying or sugar coating and all of the other hocus pocus. Don't pity me. DON'T. But DO be sensitive. Do educate yourself about chronic conditions because the chances are you have someone you love that is going through something that has turned their lives upside down.

If you want to be like Jesus... if you want to be biblical... get down in the freaking dirt with the people in your life who are suffering. Stop giving Christianese and stop giving words to people that are not genuine. BE AUTHENTIC. Step away from your cultivated, cult of a western church experience and actually act like a disciple of Jesus. Too hard to hear? Well maybe that means you need to hear it. Don't walk away from your conviction. It means something. Listen to the King. Stop acting like carbon copies in your fancy, air conditioned church buildings and start being the church in YOUR daily life. Stop ignoring the hungry homeless man you see. Buy him breakfast and a coffee one morning instead of gorging your greedy face again. Cancel your gym membership that you never use and only have for status. Stop acting. For the love of God, just stop acting. BE THE CHURCH away from the social club you deem as church.

I love going to church. I have gleaned so much from teachers and people have exemplified Jesus to me. I would not be where I am today- loving Jesus and wanting to live for Him, had it not been for those who took me under their wing and shared His mercy and love with me. I am forever grateful for those precious individuals, but I have also seen that the way believers operate in churches here in America is infinitely different then church in other countries. I am desperate for you, for me, for all of us to feel His fire, His love, His compassion EVERYWHERE and EVERYDAY, not just on Sundays and not just to be superior in the warm cocoon of our own churches.

All of this comes from a place inside of me that feels very broken. I feel broken after seeing all of the injustices I have seen in just this last year. I am done being that girl I was... and I am letting go of ALL that hinders. ALL.

That's a boastful statement isn't it? ALL. It's not going to be easy and I will fail repeatedly in my attempts, but I will get back up and by the grace of God I will keep growing and I will submit again and again the persona that is Janet and become more like Jesus. That is my prayer. That is my cry.

I am done being the one to keep in touch with people. I am done being the perpetual friend to everyone, and then get ignored when I have troubles. I am done.

And that starts right now. Today. Here and now.

People don't like messy. They ask you how you are and don't really want the answer. I dare you to ask me because I will tell you the truth. I will tell you how hard it is to take a billion medications everyday, all day long, spaced just so since med A can't mix with med B can't mix with med C. I will tell you how I wear pajamas most days. I will tell you how frustrating it is to be in this body, in this skin, and yet I value my body more then I ever have because this disease is humbling me and shaking me all apart and giving me a deep appreciation for EVERYTHING physical and mental that I ever took for granted. I will tell you how I hate to read the phoney facebook statuses. Ask me and I will tell you.

I'm off now. If you can't handle this post and me being real, don't bother to comment and don't bother to read anymore. This is reality. I will not pretend so YOU can feel better about yourself.