I just had one heck of a week and a half!
Let me back track a bit. So about a month ago my pdoc weaned me off of Abilify because I wasn’t doing great. Once I was completely off all hell broke lose. I was not well. So I called in to the Dr., this was Wednesday the 20th, she wanted to make several new changes at once. This approach typically doesn’t go over well with me, but I trusted her and wanted to get better.
The biggest change was getting me off of Seroquel in 4 DAYS! I was at 500 mg. She dropped me 100 mg every night. Well not only does the Seroquel help with sleep, but it keeps me from being angry……I mean REALLY angry! I guess the idea was to stop the Seroquel and then start Rexulti the next day. In addition to the Seroquel change she upped one med. quite a bit and took away Trileptal. So yeah… a lot going on. Within a few hours of the lower dose of Seroquel Wednesday night I was feeling a bit angry. Thursday worse. Friday was even worse. By Saturday Everybody was walking on eggshells around me and I was not feeling good. Sunday came and I was off the Seroquel. The Rexulti was to be taken around 5 p.m. By about noon I started experiencing severe withdraws. I was so freaking sick, I thought I was dying. Seriously…..I thought I was dying, it was that bad! 5 p.m. came and I was desperate for relief. I was hoping this new med. would cure me. It didn’t. I had an adverse reaction! Ugh! I was throwing up so violently that I was throwing up blood! I was begging my husband to take me to a psych ward. And I hate psych wards. But the closest one was a 45 min. drive from us. We decided to take it hour by hour. If I could get to sleep and make it to the next day, we could see my pdoc.
I’ll jump to Monday morning. I ended up surviving, obviously. Although, I didn’t sleep at all Sunday night. Every time I would lay down I would hallucinate. This now marked 2 days no sleep. We were at the pdoc’s office when they opened and of course my Dr. wasn’t in. However, we were able to see the nurse who said he would contact my pdoc’s cell.
Today was my first day I finally felt somewhat normal. My body has almost fully recovered and my mind feels pretty good. Pdoc ended up putting me back on Seroquel.
God, once again, has sustained me. He has upheld me with His right hand and covered me in the shadow of His wings. I knew He was with me throughout this entire challenging time. God is good.
So my pdoc decided to get me off of Abilify. I was on 30 mg. I have been tapering down 5 mg a week. I officially got off completely this Sunday. It has been a hairy few weeks. Lots of episodes…almost every night in fact. I finally called the nurse today at my doctors. He will get back to me tomorrow. I don’t want to get back on it, as I am on so much medication. But this has to stop. I’m still not sleeping even though my Seroquel was upped 100 mg. I know things will get better. They always do.
In the mean time, God is moving in my life mysteriously. He is coming to me in my dreams again. Giving me His living word. I awake (when I do get a few hours) and run to my desk to write down what He has told me. It is a truly an Awesome experience.
I pray that you feel His presence in your life too.
Just got over 1 week of mania. About a week or so ago it all started. I had gone 4 days on 12 hours of sleep. yuck. Then I crashed……or so I thought. Got 1 night of sleep then back to mania. Eventually it all ended. I was depressed now. But God is faithful and just like every other time, He brought me through it. I am so in love with Him.
I saw my new psychiatrist for the first time since being here in Arizona. I liked her a lot. She was very educated and a good listener. I got a genetic test done, which I think is incredible and wonder why none of my other doctors ever had me do it. She is also doing away with several of my meds. I couldn’t be happier! Of course this will take time, as you can only wean off of 1 at a time. First up Abilify. Down 5 mg a week till I’m off. Friends I am on about 9 meds right now. Many of them, as the doctor pointed out, are duplicates for the same thing. I also lost 10 pounds! WooHoo!
I am adjusting to being home alone. Sleeping a lot. Guess I need it. Eventually I want to get on a good schedule where I am being proactive most of the day.
Oh Lord, when I was in the depths of darkness, you rescued me.
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.
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.
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.
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.