Who owns a Rascal? I do.

Last year when things were starting to go down hill and we didn't have a solid diagnosis, we decided to find a mobility scooter for me.  For the past few years I have rented them if we go to places like Disneyland or the state fair, and at $50-$100 per rental, it just didn't make financial sense.  We kept an eye out on craigslist, and found a used scooter in cherry apple red.  

I loved the thing.  However, I noticed that using it, I get even more glares than I do with the scooters in big-box stores.  People act like I stole the scooter from my grandma and decided to be lazy.  Seriously - I have never gotten so many stink-eyes.  

I'd like to fix the scooter up a little since I will probably be using it more.  The front control panel sticker is worn, and I'd really like to make one out of wood veneer.  Breaking out my wood-burning tool would be fun.  It needs some new trim and a little crack fixed, but I'm sure Dad could handle that if I asked.  

Back to the glares.  I decided to show a little of my snarky nature, and add a bumper sticker.  It took me awhile to come up with what I really wanted to say.  Today I did it, and it has been added to my Zazzle store.  Check it out:

I didn't "look" disabled? by classicsredone
See other Disabled Bumper Stickers

Here's what my scooter looks like...except mine came pre-loved.  It is pretty cushy. I just need to get a basket and a drink holder, and maybe one of those shade umbrellas that clip onto the back.  Then I'll be rollin' in style.

Biting at the reins...

The past few days have been beautiful.  The temperature has been around 75-80, with nary a cloud in sight.  Naturally, I am in full gardening mode.  Except...my body does not want to behave.  Last night I got in about five minutes of weeding.  Today, bending over to get a wash cloth locked me up.  I am craving a leisurely shopping trip to Capital Nursery for seedlings and amendments.  I'm also craving the delicious produce that comes later.  The lemon cucumbers, the juicy tomatoes, the sweet bell peppers.  Right now, I'm propped up in bed with an ice pack and even a cocktail of Ativan, Flexeril, and Tramadol isn't making a dent. 

It kills me to see weeds overtaking the flower beds I worked so hard on, but it will have to wait.  If nothing else, God is presenting me with a lesson in how to be patient.  I just need to learn how to be a good student.

a funny thing about life...

They say that God works in mysterious ways.  Sometimes we wonder if He hears us, if our prayers might be answered.  They also say that when you dealing with the biggest challenge you will face in your life, you will either turn towards God or turn from him.  I didn't have to turn...I never left.  It is funny, though, how in retrospect His plan seems so perfect.  When you feel so alone during that trial, the people that stand up and show their love mean so much.  Call it fate, call it God's plan...call it what you will.  Those people are angels here on earth.  I read a story on another site about a whaling captain that I would like to share.

"A good many years ago, I was sailing in the desolate seas off Cape Horn, hunting whales. One day we were beating directly south in the face of a hard wind. We had been tacking this way and that all the morning, and were making very little headway. About 11 o'clock, as I stood at the wheel, the idea suddenly came into my mind, 'Why batter the ship against these waves? There are probably as many whales to the north as to the south. Suppose we run with the wind instead of against it? In response to that sudden idea I changed the course of the ship, and began to sail north instead of south."

"One hour later, at noon, the look-out at the masthead shouted 'Boats ahead!' Presently we overtook four lifeboats, in which were fourteen sailors, the only survivors of the crew of a ship which had burned to the water's edge ten days before. Those men had been adrift in their boats ever since, praying God frantically for rescue; and we arrived just in time to save them. They could not have survived another day." Then the old whaler added, "I don't know whether you believe in religion or not, but I happen to be a Christian. I have begun every day of my life with prayer that God would use me to help someone else, and I am convinced that God, that day, put the idea into my mind to change the course of my ship. That idea was the means of saving fourteen lives."

To those angels in my life, thank you.  I am so glad that we found each other.  Words can not express how blessed I feel to have you in my life.



 

Spring is here!

Spring is officially here!  We haven't had rain in days.  (I'm knocking on wood right now!)  The backyard FINALLY has a chance to dry up, and hopefully we'll get our fence fixed soon.  Last week it came crashing down during a particularly violent storm.  Said storm had me in my neon-pink Crocs rain boots, holding a flashlight and trying to stay dry while I figured out what went crash in the night. 

The next day, Adam and I pulled down what we could and threw the pickets into piles by the shed.  Last night the neighbor behind came over to let us know that he got our letter about why the fence was missing. :)  He is more than willing to pay his half, so that is a huge weight off our shoulders.  Money only goes so far when you are living off one income.  I was also so pleased to know that they are nice.  We hadn't talked to them yet, and the people living in the house before were...weird. 

We also got a ditch started for drainage in the backyard.  For some reason the back third of the house drains on the side, and that leaves the back a veritable swamp.  If we got summer rain, I'd get rain barrels rather than drain it away.  Too bad we get most of our rain from December - mid February.  That is, except this year.  Hopefully after the fence is built, we can finish the drain project and have the side of the house drain to the front lawn. I'd also like to add the downspout that drains into the rose bed to the drainage line.  That would be one-less gardening worry in the early winter months, when mildew can be an issue.  

Our potatoes, peas, and lettuce are doing wonderfully, and in the next couple weeks, we'll have roses blooming again.  I started a compost pile with the few weeds I've been able to pull as well as the chicken bedding.  They'll be going outside soon, so hopefully we won't have nearly as much bedding to worry about soon.  For some reason it creeps mom out to put the bedding straight into the flower beds, so composting it is a must.  My husband is planning on building a nice compost bin out of left over pickets once the other projects are complete.  

I need to make a trip to the nursery now that the rain has let up.  By now I would normally have a full garden started, but Mother Nature had her way.  We love the selection and staff that knows their stuff over at Capital Nursery.  I'll be replanting the bean tee-pee, adding tomatoes and sweet peppers, corn, summer squash, and pumpkins.  I might add some melons if we have the room, but we'll see.  Winter ruined my basil plant, and that will need to be replaced, as well.  In the front rose beds where diseased plants were torn out, I'll plant sunflowers behind the remaining rose bushes.  The bed to the side of that already has blooming iris and poppy plants. 

I do not like the heat during the summer here, but I love the color and fresh vegetables.  Here comes the sun!

Diagosis? What diagnosis?

I was asked to explain what diagnosis I was given, so here is a little information from the National Institute of Neurological Disorders and Stroke.  I do not have anti-GAD antibodies, so the prognosis is a little better, but treatment options are fewer.

What is Stiff-Person Syndrome?

Stiff-person syndrome (SPS) is a rare neurological disorder with features of an autoimmune disease.  SPS is characterized by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms.  Abnormal postures, often hunched over and stiffened, are characteristic of the disorder.  People with SPS can be too disabled to walk or move, or they are afraid to leave the house because street noises, such as the sound of a horn, can trigger spasms and falls.  SPS affects twice as many women as men.   It is frequently associated with other autoimmune diseases such as diabetes, thyroiditis, vitiligo, and pernicious anemia.  Scientists don’t yet understand what causes SPS, but research indicates that it is the result of an autoimmune response gone awry in the brain and spinal cord.  The disorder is often misdiagnosed as Parkinson’s disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia.  A definitive diagnosis can be made with a blood test that measures the level of glutamic acid decarboxylase (GAD) antibodies in the blood.  People with SPS have elevated levels of GAD, an antibody that works against an enzyme involved in the synthesis of an important neurotransmitter in the brain.

Is there any treatment?

People with SPS respond to high doses of diazepam and several anti-convulsants, gabapentin and tiagabine.  A recent study funded by the NINDS demonstrated the effectiveness of intravenous immunoglobulin (IVIg) treatment in reducing stiffness and lowering sensitivity to noise, touch, and stress in people with SPS. 

What is the prognosis?

Treatment with IVIg, anti-anxiety drugs, muscle relaxants, anti-convulsants, and pain relievers will improve the symptoms of SPS, but will not cure the disorder.  Most individuals with SPS have frequent falls and because they lack the normal defensive reflexes; injuries can be severe.  With appropriate treatment, the symptoms are usually well controlled.

What research is being done?

The National Institute of Neurological Disorders and Stroke (NINDS) conducts research related to SPS in its laboratories at the National Institutes of Health (NIH), and also supports additional research through grants to major medical institutions across the country.  A study using the drug rituximab proved ineffective in treating individuals with the disorder.  Current research is focused on understanding the cause of the disease and the role of the anti-GAD antibodies.