Busy, busy dreams...

It happened again last night.

For the past month I have been having dreams. Last night it happened again. I woke up drenched, even the tops of my knees were wet with my perspiration. I am not hot, in fact I feel a bit cool and I can feel goose bumps coming and going.

There are no people in my dreams.
I am always alone.

They begin with me needing to do something, something big. There is always a large staircase that I must climb and a good distance that I must walk. The weather is always beautiful, both day and night.

Last night's dream was about me having to move. It was all about the stuff I needed to move and how I was moving it piece by piece up the stairs. My stuff was scattered so I had to go to many closets and rooms to find each piece and I moved only one thing at a time. Then I would have to carry it up those long stairs. But when I get to the top of those stairs, I am happy because the floors are so shiny.  This repeats over and over until I wake up drenched in my own sweat.

I don't dream these dreams every night. The pattern is random, a night here and there. But the plot is always the same, just different scenarios. Then the following morning my fibromyalgia is flared and I feel so physically tired.

Today my hands, feet and under my arms are burning terribly like a really bad sunburn. My breathing is shallow and I have to force myself to breathe deep, it just doesn't come naturally. Every joint is swollen and aching. I hurt everywhere. The ringing in my ears is annoying. My skin is so sensitive it hurts at every touch. My brain is fogged but still trying to keep me motivated to get up and try. I want to go back to bed, take a pill and try to sleep through it.  But that won't fix it either. I need to do my stretches, walk as much as I can, and stay busy so that I feel like I am accomplishing something. I don't want to give in or let it win.

I hate fibromyalgia.

Tomorrow will be better.

I'm falling...

These past few days have been very hard. I feel my attitude slipping, my body is arguing, and mother nature is being mean to me. Today feels like its a mountain, yesterday was a mountain and so was the day before.

Being a caregiver is trying. It can wear you down. I am watching my mother's world get smaller. Her thinking now is mostly just her needs, they worry her, she wakes up each morning thinking about what she needs. It is sad. Our conversations are mostly reminders of what I need to do for her. Her memory is fading and her thoughts are limited.  Sometimes I wonder if her staying in her home is what is best for her.  Her only contact is my brother and I.  Mom was never a family person, her interests were always in her hobbies and clubs. We are surrounded by family in our small town but they are strangers when it comes to mom. I don't blame anyone for this, it was just mom being mom but it makes me sad that as she got older she had no desire to get close to anyone but my brother and I. Now our conversations are just taking care of her needs then she is ready for us to leave. She seems happy being alone with her things.

She let her helper go, told her she no longer needed her. Her helper was such a big relief to me. She gave her a good bath once a week, checked her body for sores, bruises, etc. rubbed her with lotion and cleaned her house. She was trained to take care of elderly bodies, minds and habits.  Now I have lost that trained eye. When I go up to check on Mom, she meets me at the door to her kitchen, immediately speaks of the tasks or errands I need to run for her, and then she is ready for me to leave. There is no asking me to come in and sit down, or stay to visit but there really never has been. She did slip yesterday and admitted that she has been leaving a burner on her stove on so now she cooks her food one at a time.  I know in her mind she is adapting to her body's limits. I take her food but she eats what she wants when she wants. When do we intervene? Do we? Or do we continue to let her live out her life as she chooses?

I had to intervene once and it was not good. We had been going back and forth over her medicine. I would put her pills in her daily keeper for her. She would then take what she thought she wanted and add more when she wanted. Finally our doctor told her enough was enough. We were then able to switch her to the prepackaged daily (morning, noon and evening for her) pill packs from our pharmacy.  She was mad at me for over a month over that.  Then her helper found mom had a bottle of thyroid medicine hidden in her bedroom that she was still taking when she wanted to.

Then there is my body. It has a mind of its own and lately it has been angry. Fibromyalgia is making my skin burn and feel like a terrible sunburn, especially where skin meets skin, my hands, feet and underarms are extremely painful today. I wear soft loose fitting clothes, mostly soft cottons, to ease the sensitivity. This works much better than any pill. My joints are tight, and I find them drawing up when I am still. My finger tips have no feeling except lots of pins and needles poking them. So I drop things. I am clumsy and slow.

I had a nuclear stress test last week for my tachycardia after my ekg showed abnormalities. I feel it is stress, just as it was 3 years ago. I am still waiting on the results, but I am not too concerned about it today. It just slows me down sometimes.

This week our local farmers will start cutting their corn. With the ragweed, dust and mold readings already so high the cutting of these dusty corn stalks with only make it worse. But it only lasts about a week and then they will be done, We are using lots of Puffs with lotion, tylenol cold and sinus, flonase and my nedi pot. I just got off a round of antibiotics for a sinus infection, but the headache is still here.  I am ready for the cooler weather.

Our son in law will have his cancer surgery in a couple of weeks. I will be staying with him during the day at the hospital and then at home through his 6-8 week recovery. I pray that his surgery is a success and that his body adapts to not having a real stomach or esophagus. I also pray that they do not find any more cancer. The chemo and radiation have made him weak, but he is in good hands with his medical team.  He is having a hard time, both of his parents died in their 40's from cancer and he has no siblings. He knows first hand what cancer can do.

I am tired. I remember my father telling me to just get up and pull my boots up by the strap and go on. I also remember telling him that my boot straps were worn out and broken. That is how I feel today. I have done my morning stretches, which were painful. I have read my devotions and lit my prayer candle. I have journalled my blessings and gratitude. I have blessed others with thinking of you cards to mail, and some food to share.  I have hugged my husband and played with kitty.

But I still feel this way. Today I just don't feel very grateful. Today I don't feel like me.

Sunday Ponders...

What I am reading...     Kdaughter brought me a book by Joel Osteen.  I had heard of him and that he was a rich preacher that had a huge church somewhere in Texas. That was all I knew about him so before I started reading this new book, I did a little research. Yes he is a rich preacher who has worked hard to build a literary career. His sermons are televised to over 7 million people weekly in over 20 countries. 

"When I grew up, the devil was a reason why I had a headache or the devil was the reason I got mad today. We always blamed the devil. I think today when I say the enemy, I like to make it broader. Sometimes the enemy can be our own thoughts. We've trained ourselves the wrong way. Or the enemy can be our own lack of discipline. Some people preach about hell like you're already going there, and to me the Gospel means 'Good News.' I'd rather say God is a God of mercy. So I think the people already know what they're doing wrong, and I certainly believe in hell. But to me, when I see thousands of people before me, it just doesn't come out of me to say, 'You guys are terrible, and you're going to hell.' I'd rather say that God is a God of mercy. You've got to live an obedient life, but for every mistake you’ve made, there's mercy there, and I believe we can do better." Joel Osteen

 I printed this quote on my color printer and framed it in a beautiful frame. I set it on the bathroom sink counter and it is the first thing I read each morning. 

It has reminded me of the choices I have in my life, and my responsibility for them.

 This is one part of my healing process,

my journey to be a better me. 

I want to be happy and 

I do believe for me, it is a choice.

I have begun my journey to communicate my feelings without expecting anything in return. I gave up writing for almost 2 years. I need it, it exposes me, holds me accountable and guides me along to the next step. It empties my soul, it takes out the garbage so to say.

I am also saying "NO".

This is not as easy as I thought.

I am now journaling, some may call it bullet journaling, however, my journal has no rules, no expectations, no disappointments, no drama.

I plan to share some of my ideas as I go and by sharing this with you, I am making myself accountable to this journey. I hope you will come along, share your thoughts and ideas, lift me up and hold me accountable.

Linking with 

Bookdate What are you Reading!

As a man thinketh in his heart, so is he. Richard Pearcy

I am ready for it to happen...

Spring 2016, we bought new kayaks for the hubs and I to enjoy in our back yard pond. Our life out here in the boonies (hillbilly talk for way out in the country) is all about being outdoors, getting dirty and having so.

It is winding down, my life that is.  Some BIG projects for our area non-profit are slowing down, time to pass the torch so to say and move on. I have made many good friends, fought many long and hard battles, and am looking forward to others leading the way.

“Moving on is easy.

It's staying moved on that's trickier.”  

Katerina Stoykova Klemer

Moving on for me is to have total knee replacement in 9 days.  I am ready. I have given in to my right knee for many years, never realizing what I had given up in doing so.  Good posture, restful sleep, hiking, biking, squatting, and cleaning all those dust bunnies down low to name a few.  

Do any of you get tired?

These past two years have been busy ones.  Too busy for me.  I have fibromyalgia and it is kept under control with planned rest stops.  I also have an ileostomy, not my choice, but ulcerative colitis demanded it or my life at the age of 32.  I have managed this inconvenience well, only had two revisions and a relocation in the past 26 years. But the side effects of the many medications to treat this disease (that killed Glen Frey, the Eagles, RIP) have destroyed my bones. Time to get new ones, starting with my right knee.

I have stayed up on reading and following all the blogs I enjoy so much. But I sat quietly, afraid to speak in fear that I would not meet others expectations. You know those blogs that post regularly, with beautiful photos, positive attitudes and motivational views into their daily well-planned lives. 

I love those blogs,

and I look forward to reading those blogs every time they post.

Recently, though, a blog that I follow, published a "real life to me" post. Susan at Ash Tree Cottage, said she was tired, and hurting from a flare up of Fibromyalgia. Finally, some one said its ugly name and I was not alone anymore.  I know it took courage, desperation and some humility to publish her post.

http://ashtreecottage.blogspot.com/2016/10/my-struggle-with-fibromyalgia_8.html

I rarely tell people I have fibromyalgia or an ileostomy.

Unless you have it, you just won't understand it.

I cursed it's name...

It began about 2 months ago. I began having trouble with words. I could see the word, spell the word but I just couldn't say the word, I just couldn't get the word from my brain out my mouth. It would happen from time to time, them from day to day, hour to hour then I couldn't even remember my husband's name.

I began to wake up in the middle of the night in pain. Each time I would move my muscles would freeze. My vision became blurry, my balance off, muscle spasms started when I awoke and continued for hours. My skin felt as though I had been dropped into a deep fryer.

Walking, talking, thinking, just being me, became a struggle that took all of my energy and tested my faith. I cursed it's name. I didn't want anyone to know about it. I am ashamed of what is happening to my body.

I have fibromyalgia.

Am I crazy?

Depressed?

Looking for attention?

Lazy?

I have asked myself these questions over and over. After seeing specialist after specialist I was finally diagnosed, it had a name but no treatment plan. 

So I began a journey of drugs, more drugs, less drugs, different drugs, tai chi, yoga, meditation, exercise, diets, shots, and anything else that someone recommended.

My symptoms were all over the place, unable to find a pattern or treatment plan, we just kept trying.

Then I found a drug named Cymbalta and it worked, the pain subsided, my short term memory improved greatly, my coordination also improved. I quit dropping things, tripping over curbs, bumping into furniture, I could remember people's names and where things were, I even began to sleep more than 3 hours a night. I got my life back.

Until the side effects. After two years of living a comfortable and happy life, I developed bleeding ulcers in my mouth and had to stop taking it.

Now that ugly fibromyalgia is back, full blown again, and I struggle to write, walk, and remember your name. My skin burns, my fingers, elbows and neck ache and freeze, my vision is blurred. 

My brain is in a fog that comes and goes throughout my day. The most frustrating is my loss for words, that I can see the word, spell the word but I can not say the word. Not even my husband's name.

My body is arguing,

it is in a war

with itself.

I wake up each morning in pain and have to talk myself into not giving in to it, to not letting it win, to keep moving, reaching, thinking, and living, and keep telling myself I am not crazy, that these symptoms are real, and treatable. 

Then I get on my knees and pray for a cure,

and I thank the Lord above

for another day

on this beautiful earth.

Happy Easter!