Tag Archives: Lupus

There

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I feel strong today. My mind feels strong, my body feels strong, but most importantly, my soul feels strong. I have been doing well, friends. The fibromyalgia is giving me more trouble than anything. It’s been super hot here and I don’t think my body likes it. I also had to get off my original fibro/lupus med because my new insurance was being not nice and left me with over $400 to pay for it. So I started something else which is not nearly as effective….bummer.

I’m starting to really miss church again. I watch sermons online and have my own time with the Lord most Sundays while the rest of the clan is at church. I just miss being there. You know “there.” Where He meets you, I know He will meet you wherever you are, but there is something heavy, worshipers united, Holy Spirit falling, being “there” in the midst of it all. I just can’t sit through it. I try and every time I have to leave. This doesn’t just happen with church. I can’t go to movies or even watch t.v. Sometimes I can read a book, but it has to captivate me from the beginning, no slow starters. And even then I can only read a few pages at a time. And so as it goes, when I do go to church I have to take my own car so I can come home early….bummer. I think I will try tomorrow. I can always make it through praise and worship and if I have to leave after that oh well.

Oh, how I love my Jesus. I love how He works from the inside out. I am so in love with Him and how He meets my every need. I adore Him and how His love has ravished my heart. How He is transforming and renewing my mind.

A Season of Change

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My life has just taken an unexpected turn! We just found out recently…very recently, that we are moving to Arizona! My husband got a great job. We will be leaving this morning to find a house there, we currently live in California. The house is all packed up and ready to go and the moving truck will be here next Monday! Guys, I’m freaking out! I’m so excited! This is proof that God does hear our cries and He answers. Not always in our timing or in our ways, but He answers. Arizona, in the past, was not my first choice as we discussed where we would live if we could move. But I have grown to love the idea of the place and have heard almost nothing but good things about it.

I have been so proud of myself over the last few days as I have dealt with all of this. Yes, I have had some panic attacks and I have to stop helping more then I like due to pain. Overall it’s been a success! I have complete peace about it and know, that I know, that I know that THIS is God’s plan…Amen!

Everything

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I was reminded today to be thankful for Everything. As little or big as they are. Thankfulness must be pure in nature. Especially as you lift up your voice to the Lord God Almighty. My family has been through a trying few months. Everyday I thank God for giving me another day, but rarely do I take the time to thank Him for the breeze, or the birds, or the home I live in. Seeing everything with a heart of gratitude when you have no money or wonder how your going to pay the bills is a game changer. So much beauty and you realize everything will be okay. Look at how He cares for the birds. Feeding them and giving them shelter, He loves us SO much more.

I almost went deaf in my right ear last week. I had an inner and and outer infection that had eaten a hole right through my eardrum. After 2 weeks of treatment and becoming literally sick from the infection, today I can hear. The bipolar has reared it’s ugly head a hand full of times this past month. Really been battling with anger, mania, and insomnia. The fibromyalgia and lupus have been fair. I started a new pain med, which is actually taking the edge off.

I was reminded today to also live in the moment with God. Jesus, I’m thankful for the music as I listen to your worship right now. I’m thankful for the sound of my husbands cpap mask that I can hear right now. I’m thankful for the storm that’s coming in and the breeze that’s filling my bedroom right now.

He is good, He is holy, He is worthy.

War

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Life hasn’t been easy as of late. I’ve been in a lot of pain. And struggling with the bipolar as well. I’ve had quite a few down days and days where my mind just doesn’t feel like my own. I feel possessed by the illness on days like that. I do a lot of praying. LoL! Now this is new. I’ve started to get claustrophobic in the shower EVERY time I get in. The upside is, this makes for quick showers. It used to be just elevators.Not anymore. Even the car can get me, I have to have my music playing.

Right now I’m on 30 mg of morphine and I’m in so much pain I can’t sleep. It has been on and off today…the pain. Sharp shooting, stabbing, and even a dull ache. Mostly in my legs and feet. Restlessness of my arms and legs when I do lay down.

I still refuse to let it all get me down…..completely. Yeah, it’s hard. Really hard. But the Lord didn’t say it was going to be easy. This is WAR! War on my body. War on my mind. But that’s okay. I’m up for a fight.

My little Lily dog is doing well. She is so smart! And sassy! I just love her to pieces.

Carpe Diem

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The holidays were tough. I had incredible anxiety. So much so that it was waking me up at night. I went through a Fibro. flare up that lasted a good 2 weeks. I was unable to attend Christmas Eve dinner with my husband’s side of the family due to anxiety and pain. Christmas day was a little easier. We stayed home and had my aunt and grandparents over. Even that put be back to bed as soon as everyone left.

This has been tough on me. I want to seize the day. So every morning I get up early and spend some time with my Lord. I than plan my day and NOT according on how I feel. I try to seize the day! Most days failing terribly, but trying none the less. I get frustrated sometimes by how much time I waste puttering around the house or in bed. But some days the pain is so great I can’t do much else.

I guess I have had Fibromyalgia this whole time. The doctor just didn’t tell me. I was wondering why they would tell me that the Lupus was not reading real high in blood tests, but I would be in crippling pain. It wasn’t until this last visit that the doctor was gone and I saw the PA. She wrote on my checkout/lab slip Fibromyalgia and Myofascial pain syndrome. I saw that and was taken aback but didn’t say anything. I got home and called them, asking what my diagnosis was. After they rattled off all 3, I questioned it, Is it possible to have all 3 ( Lupus, Fibromyalgia, Myofascial Pain)? They said it was. And so here I am.

My hope is in Christ and I will continue to seize the day.

Just Rambling

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Sometimes we crave change. Other times it’s stability  and routine we want. By “we” I mean me. I wish I had more of the latter for the sake of my husband of children. I’m sure they are getting tired of the constant hair color changes and cuts. I want a new piercing, I have my septum done, no I don’t. I want a tattoo…..no I don’t. I wake up at 5 a.m. and am ready to take on the day. I wake up at 6 a.m., get coffee and go back to bed. My mood is almost NEVER the same. Bless it’s little heart, it’s so confused.

So my new thing now is getting discovered! not really. I have great plans of youtubing me singing all my favorite jazz and blues songs. Yeah, I sing and I freaking love it. Been singing since I was a wee Rachel. But, like everything else, I’m fickle. Most days, to put on makeup for it, seems too exhausting. I’m not lazy, but my poor hands cramp on me and ache from the lupus. Oh well, maybe one day I’ll chase that dream.

I am a self proclaimed chameleon. Ever changing. You just never know what your going to get when you see me. That’s fun, right? I don’t know.

Lately I’ve been sleeping a lot. Not sure why. Just been really tired and can’t seem to shake it. For the most part, I still get my butt in the shower in the morning. Still make the bed and try to make dinner. Just rambling….

 

 

 

 

 

To You

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There were days that I thought I might stop breathing, but You were with me.

There were nights when I couldn’t stop crying, but You were with me.

There were times when I felt the anxiety was going to overcome me, but You were with me.

There were times when I thought my body would give up, but You were with me….always..with me.

You’ve been with me since my first breath. You have set and ordained a plan and a future, a hope and a promise. Your goodness transcends my very thoughts.

I know it is well. All is well, because you said so.

 

And He said to me, ” My grace is sufficient for you, for My strength is made perfect in weakness. ” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me.  2 Corinthians 12:9

Be anxious for nothing, but in everything with prayer and supplication, with thanksgiving, let your requests be made known to God. Philippians 3:6

Someone needs to hear this tonight.