Tuesday, September 17, 2019

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.





Monday, September 16, 2019


I do feel better. My body is still fighting itself but my energy level is much improved. We had a good weekend with family, church and dinner out. It felt like a normal Sunday.


Mom is failing more each time I take her somewhere. This morning she was totally confused as to her blood pressure. She said she had called the doctor and his nurse had told her they want her blood pressure below 60. Then 10 minutes later her explanation was not making sense at all.  I kept asking her what her blood pressure was but she wasn't making any sense of any of it. I finally was able to understand that she hadn't slept well and had gotten up and taken a tranzene.



We drove into town and I took her to Hobby Lobby. She has no balance so she must hang on to my arm to stay upright so I get her out of the car carefully. We came around the end of the car and she couldn't get her foot on the ground.  It was like her depth perception was not working and she was trying to put her foot down about a foot above the pavement. I hung on to her tight to keep her from falling. Her steps are now only about 6 inches at a time, so we move very slowly and others must wait.

As soon as I got her in the store and put the cart in front of her she grabbed on and went to shopping.  It was like a miracle, she was walking fast, knew exactly where she was going and enjoyed every minute of her 2 hours at Hobby Lobby. She left with a cart full of goodies, a big smile on her face and telling me what all she was making for presents for people for Christmas. Our postmaster, our girls at city hall, the maintenance men at city hall, our mayor, her craft friends, her church secretary, the preachers wife, etc.



I did buy a book while I was staying one aisle away (so I could keep an eye on her) Magnolia Story by Chip and Joanna Gaines. I admire their strength as a couple working together.


I'm saving it for when our son in law Jason has his cancer surgery next week.  We are planning on taking shifts so that someone is always with him those first few days. They are telling us he will be in the hospital 14-21 days to to just expect complications. He will be put on a ventilator during surgery as they have to collapse his lung to get to the tumor. He will have many incisions and drains and will be unable to eat or drink until they can make sure the connection of what is left of his esophagus and stomach are connected with no leaks and completely healed. This is so scary to think about.


I am glad to be home for a few days. Even if the house is dirty and in need of a good vacuuming. I've got the laundry going and plan on doing a heavy cleaning of the fridge. Country Pork Ribs are in the crockpot, cooked apples and fried cabbage will be the sides. Kitty is asleep in her bowl in the middle of the living room floor. She rests so easy, I'm jealous.


I feel more grateful today.
For that I am grateful alone.








Tuesday, September 10, 2019

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.


Saturday, July 13, 2019

This is hard to write...



The doctor came in and said "It's Cancer".
It's the same cancer in the same spot as my Father's. 
We lost him one year later.


We were standing there talking with our son (in-law) when the doctor who did his scope walked in. We were all expecting him to say "acid reflux" but instead he said it's esophageal cancer. 

Over the next few days our son (in-law) had many more tests of his digestive system to determine size, stage and plan. It's stage 3, the tumor stretches from the middle of his esophagus to the middle of his stomach and it has multiple layers and fingers and it is growing fast.  Chemo and radiation have begun and will continue through the middle of august.  He is only able to drink the high calorie high protein substitutes and works so hard to swallow the smallest bite of real food.

I am staying at their home (100 miles away) monday thru friday while our oldest daughter continues to work. Our oldest daughter is one of the strongest women I know. I'm going to do all I can to help her.




Mom is doing great with her vascular dementia. At 90 years old she can bounce back and continue on. Big brother is managing her needs very well without my help. I am proud of him.



Thehubs is also maintaining our home and keeping the cat alive, even though she is not the easiest animal to take care of.  Thehubs is now a 7 year cancer survivor himself.  He works hard to take care of our family and I love him dearly.

My body is not helpful. I spent 5 days in bed after a trip to the ER diagnosed with pneumonia. So it's been tachycardia, blood clots, thrush and now pneumonia for me so far this year. The tachycardia is so draining, my heart beats between 105 and 113 resting, then goes up to 135 just walking to the bathroom.  It comes and goes several times a day and I just have to sit down and wait it out.  I see my doctor next week.

I have lost 37 pounds this year and am now at my goal weight. I thank my youngest daughter for that. She is a type 1 diebetic since birth and celiac-gluten intolerant. So I quit cooking with sugar and flour. The extra 35 pounds that I had gained since my knee surgery started falling off. Now instead of baking brownies, I cut a watermelon.

She just got out of the hospital for having blood sugars so high she was comatose. She had an mri yesterday and is on a waiting list for a special biopsy of her stomach which can only be done at Barnes Hospital in St. Louis.  She deals with her own health, takes care of her disabled veteran hubs and raises our now 7 year old grandson.  Her load gets heavy.

If you stop by, please say a prayer for our family
or send positive thoughts our way.
They will be sincerely appreciated.

We know God is in control.
Thankful for each day and for your prayers.

Jackie