Long Day

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I left my apartment at 10 AM and got back around 8 PM. It’s the longest I have left Aleka alone. I missed her! She missed me and Zeke, too. When I turned the key she was right there to sniff us. 

I called Rhett on my way back to Lakeland and he offered to take me out to dinner to celebrate. We went to CiCi’s Pizza. I hadn’t been there in months. I think it was about $12 for two people. What a good deal! I hadn’t eaten anything all day and I had only had about an inch of lemonade to take my meds.

I knew I would not remember to take my Mestinon every three hours today, so I took a Timespan. Name brand Mestinon is sooooo much better than the generic ones I usually take. It seems to keep weakness at bay longer and to very gradually taper off. The generic Mestinon wears off like falling off a cliff….abrupt! By the end of the day my voice was giving out. I wish I had been smart enough to take another dose. I took some an hour ago and feel much better.

Yesterday when Judy was here, the heel of my right hand was swollen and red and there was a hard bump. We thought it was calcium. When I woke up today it hurt less and sometime during the course of the day, it TOTALLY stopped hurting. Yes!!! I love getting better :-)

Now the weird symptom of the day is knots in my muscles. It’s very random. Part of me will hurt and when I rub it, the muscle is a large bump that’s hard and hot. Geeze…..maybe I have been abducted by aliens who are experimenting with me? 

It was hot today. 

This and That

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I miss rocks. I think I’m going to have to BUY some rocks! After living in Vermont, that feels weird. I lived with plenty
of rocks there. It’s time to put out my herb planter box and I need some rocks for the bottom.
 
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I tasted the sourdough starter when it was time to stir it today. Tangy!
 
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Why do the heels of both hands hurt so bad?  Is that related to arthritis? They started hurting yesterday and now it hurts BAD. I took some garbage out to the dumpster and dropped it from the pain and weakness. Dang.
 
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Still looking for a good, cheap, full sized van somewhere near Lakeland, Florida 
 
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The apartment manager came by today and admired my plants. I asked how many I could have on my piece of patio and yard. She says I can COVER it in planters and even plant directly in the ground. I Have a bit more yard than most apartments because of my location. I am soooooo psyched! :-)

Banana Crumb Muffins

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Banana Crumb Muffins 

1 1/2 cups flour

1 tsp baking soda

1 tsp baking powder 

1/2 tsp salt

4 bananas, mashed

3/4 cup sugar

1 egg

1/3 cup butter, melted

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1/3 cup brown sugar

2 Tbsp flour

cinnamon

1 Tbsp butter

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 Mix up top ingredients. Put in muffin pan. Cover with crumb topping. Bake at 350 for about 20 minutes.

 

Mixed Connective Tissue Disease

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 Although it seems I have a bazillion different things wrong with me, they sort of fit under this umbrella of mixed connective tissue disease. I was told I had Raynaud’s as a teen, RA at 18 and lupus in my late 20’s. It didn’t take long until some rheumatologist said it was all lumped together under MCTD. The rheumy I saw last year confirmed it was MCTD. He was the smartest and most compassionate of all the ones I’ve seen. We spent hours talking about what’s going on with my body and the general understanding of autoimmune and neurological diseases.  Many people with lupus also get myasthenia gravis. It seems as if there’s another autoimmune problem to be had, my body tries it out! I am increasingly worried about the scleroderma on my leg. It is creeping up higher and higher and it HURTS where the fat necrosis meets the healthy part of my leg.  And…my hair has been coming out in gobs the last two times I washed it. I will be real glad when this flare is over.I woke up with a very swollen index finger, but the rest of my joints are still doing a zillion times better :-)   Here’s an article about MCTD…

Mixed Connective Tissue Disease (MCTD)

Mixed connective tissue disease is a term used by some experts to describe a collection of symptoms similar to those of systemic lupus erythematosus, scleroderma, polymyositis, and dermatomyositis.

About 80% of people who have this disease are women. Mixed connective tissue disease affects people from ages 5 to 80. Its cause is unknown, but it appears to be an autoimmune disorder.

Symptoms

The typical symptoms are Raynaud’s phenomenon (in which the fingers suddenly become very pale and tingle or become numb in response to cold or emotional upset, joint inflammation (arthritis), swollen hands, muscle weakness, difficulty in swallowing, heartburn, and shortness of breath. Raynaud’s phenomenon may precede other symptoms by many years. Regardless of how mixed connective tissue disease starts, it tends to worsen, and symptoms spread to several parts of the body.

The hands are frequently so swollen that the fingers look like sausages. A purplish butterfly-shaped rash on the cheeks and bridge of the nose, red patches on the knuckles, a violet discoloration of the eyelids, and red spider veins on the face and hands all may appear. Skin changes similar to those in scleroderma also may occur. The hair may thin.

Almost everyone with mixed connective tissue disease has aching joints; about 75% develop the swelling and pain typical of joint inflammation (arthritis). Mixed connective tissue disease damages the muscle fibers, so the muscles may feel weak and sore, especially in the shoulders and hips.

Although the esophagus is often affected, it seldom causes difficulty in swallowing and is not painful. Fluid may collect in or around the lungs. In some people, abnormal lung function is the most serious problem, causing shortness of breath during exertion.

Occasionally, the heart is weakened, leading to heart failure. Symptoms of heart failure may include fluid retention, shortness of breath, and fatigue. The kidneys and nerves are affected in only 10% of people, and the damage is usually mild compared to the damage caused by lupus. Other symptoms may include a fever, swollen lymph nodes, abdominal pain, and persistent hoarseness. Sjögren’s syndrome may develop. Over time, most people develop symptoms that are more typical of lupus or scleroderma.

Diagnosis and Treatment

Doctors suspect mixed connective tissue disease when some symptoms from lupus, scleroderma, polymyositis, or rheumatoid arthritis overlap.

Blood tests are performed to detect an antibody to ribonucleoprotein, which is present in almost all people who have mixed connective tissue disease. A high level of this antibody without the other antibodies present in lupus is reasonably specific for mixed connective tissue disease.

The treatment is similar to that of lupus. Corticosteroids are usually effective, especially when the disease is diagnosed early. Mild cases can be treated with aspirin or other nonsteroidal anti-inflammatory drugs (NSAIDs)

or similar drugs, or very low doses of corticosteroids. The more severe the disease, the higher the dose of corticosteroid needed. In severe cases, immunosuppressive drugs may also be needed.

In general, the more advanced the disease and the greater the organ damage, the less effective the treatment. Scleroderma-like damage to the skin and esophagus is least likely to respond to treatment. Symptom-free periods can last for many years with little or no continuing treatment with a corticosteroid. Despite treatment, mixed connective tissue disease progresses in about 13% of the people, producing potentially fatal complications in 6 to 12 years. 

I never learn….

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I was feeling better than I had in a long time, so I walked over to Rhett’s apartment to give him his mail. I washed, dried and hung up and put away two loads of laundry, took out 2 bags of trash, lightly cleaned the kitchen, straightened up the living room, changed his sheets and transformed his pork roast. Rhett used the crock pot to cook the roast and asked if I would make it edible.  I made one container of pulled pork with bbq sauce and four servings of pork stew with gravy, potatoes, carrots and peas. Rhett ate one bowl right away.

So much for my finger joint. The left hand index finger is all owie again from over use. I never learn.  But…I got to do some of my own laundry and I kept a baggie of pork for myself. Came home to the delicious smell of fresh baking bread. Before I took off I put the fixings for honey oatmeal bread in the bread machine. Mmmmmmm…..

Judy was here today, looking for good things to eat in my kitchen. All I had to give her was chili and crackers. She lobbied for some more fresh bread. Now I will have something to feed her tomorrow :-)

I peeked in at the sourdough starter. It’s already bubbly. It’s going to be hard to be patient and wait 12 days until I can make sourdough! 

Sourdough

 

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Now that I have my own place again, it’s time to get some sourdough going. Got my crock yesterday and mixed up the starter today. These are the directions I am following for this batch. There are step by step picture directions, too.

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Want to make some yummy sourdough baked goods? Pancakes? Here are some recipes. I will keep you updated on how my starter does and what I make with it. If you already make sourdough or are going to do this with me, let us all know how your sourdough adventure is going.

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Sourdough Links Page 

YES!!!!!

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I’m still wicked bad fatigued. I got up this morning and went right back to bed after taking my meds. I woke up around 1 pm and my ankles were back to being skinny :-) I was sort of in robot mode and didn’t think much about the rest of me. I cooked some lunch and took a shower. Taking the shower is what made me realize….my joints hardly hurt at all!

I can now make fists with both hands. They have been too swollen to do that for days. While getting dressed after the shower, I could hardly lift up my arms or legs. Sounds bad, but that’s a good thing in disguise. I realized I never took more Motrin or Mestinon since early this morning. I didn’t hurt bad enough. I just popped my meds and in 20 minutes I should be able to lift my arms just fine. That’s a myasthenia thing.

Could it be true? Are my joints getting better? The only joint pain remaining is my left index finger. I can’t totally straighten it/flatten it. It might be more of a permanent change. It feels like the changes in my pinky fingers.

 Anyway…I’m feeling a zillion times better!!! YES! 

The Iron Rod

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“The truth is that our only safety, our only security, our only hope is to hold fast to that which is good. As the mists of darkness gather around us, we are only lost if we choose to let go of the iron rod, which is the word of God.”

–David S. Baxter, “Faith, Service, Constancy”, Liahona, November 2006, 13–15

1 Nephi 15:23–25

 

Sleepy Wendy

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I did NOT want to get out of bed today. The only things that caused me to get up were mine and Zeke’s bladders. Then late this afternoon I decided I had better head off to pick up my “new” green ceramic pot. I got it on the local freecycle-like group list. It’s a really nice planter :-)
 
I started realizing that I never go anywhere by myself. Usually  my trips are at the request of Rhett or Judy or to church. It felt weird to go someplace all by myself….I felt like a grown-up! On the way back I spent $2 on a crock for my sourdough starter at a thrift store and then went to the grocery store and got food and drink. I filled the whole wheelchair basket up for $12. There were lots of manager’s specials around the store. I got 5 gallons of real lemonade for $1.25 each, a package of matzo ball mix for 29 cents, a box of blueberries for $1 and a banana, a mango, a Florida avocado, a new dish washing brush and some ’shrooms.
 
I made the mistake of leaving my dish washing brush at Rhett’s the other day. He fell in love with it and whined when I tried to reclaim it.  It’s the kind you can put dish soap in. Probably better for a blind guy anyway…
 
All that sleep DID help. The horribly painful elbow joint is a mere shadow of the pain it was giving me. YIPEEEEEE!!! Now if the rest of my joints would follow suit, I’d be ecstatic ;-)  

I love this pic :-)

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