Vasculitis Awareness Week

This week is Vasculitis awareness week. Since Vasculitis is one of the many medical conditions I deal with on a daily basis I thought I would write about it here.

What is vasculitis?

Vasculitis is a general term for a group of uncommon diseases that feature inflammation of the blood vessels. The blood vessels of the body are referred to as the vascular system. The blood vessels are comprised of arteries that pass oxygen-rich blood to the tissues of the body and veins that return oxygen-depleted blood from the tissues to the lungs for oxygen. Vasculitis is characterized by inflammation in and damage to the walls of various blood vessels.

Each of the vasculitis diseases is defined by certain patterns of distribution of blood vessel involvement, particular organ involvement, and laboratory test abnormalities. As a group, these diseases are referred to as vasculitides.

What Are the Signs and Symptoms of Vasculitis?

The signs and symptoms of vasculitis vary. They depend on the type of vasculitis you have, the organs involved, and how severe the condition is. Some people may have few signs and symptoms. Other people may become very sick.

Sometimes, the signs and symptoms develop gradually over months. Other times, the signs and symptoms develop faster, over days or weeks.
Systemic Signs and Symptoms

Systemic signs and symptoms are those that affect you in a general, or overall, way. Common systemic signs and symptoms of vasculitis are:

* Fever
* Loss of appetite
* Weight loss
* Fatigue (tiredness)
* General aches and pains

Organ- or Body System-Specific Signs and Symptoms

Vasculitis can affect specific organs and body systems, causing a range of signs and symptoms.
Skin

If the condition affects your skin, you may notice a number of skin changes. For example, you may notice purple or red spots or bumps, clusters of small dots, splotches, bruises, or hives. Your skin also may itch.
Joints

If the condition affects your joints, you may ache or develop arthritis in one or more joints.
Lungs

If the condition affects your lungs, you may feel short of breath. You may even cough up blood. The results from a chest x ray may show signs of pneumonia, even though that isn't what you have.
Gastrointestinal Tract

If the condition affects your gastrointestinal tract, you may get ulcers in your mouth or have abdominal pain.

In severe cases, blood flow to the intestines can be blocked. This can cause the wall of the intestines to weaken and possibly rupture. A rupture can lead to serious problems or even death.
Sinuses, Nose, Throat, and Ears

If the condition affects your sinuses, nose, throat, and ears, you may have sinus or chronic (ongoing) middle ear infections. Other symptoms include ulcers in the nose and, in some cases, hearing loss.
Eyes

If vasculitis affects your eyes, you may develop red, itchy, burning eyes. Your eyes also may become sensitive to light, and your vision may become blurry. In rare cases, certain types of vasculitis may cause blindness.
Brain

If vasculitis affects your brain, symptoms may include headache, problems thinking clearly or changes in mental function, or stroke-like symptoms, such as muscle weakness and paralysis (an inability to move).
Nerves

If the condition affects your nerves, you may have numbness, tingling, and weakness in various parts of your body. You also may have a loss of feeling or strength in your hands and feet and shooting pains in your arms and legs.

How Is Vasculitis Treated?

Treatment for vasculitis will depend on the type of vasculitis you have, which organs are affected, and how severe the condition is.

People who have severe vasculitis are treated with prescription medicines. Rarely, surgery may be done. People who have mild vasculitis may find relief with over-the-counter pain medicines, such as acetaminophen, aspirin, ibuprofen, or naproxen.
Goals of Treatment

The main goal of vasculitis treatment is to reduce inflammation in the affected blood vessels. This usually is done by reducing or stopping the immune response that caused the inflammation.
Types of Treatment

Common prescription medicines used to treat vasculitis include corticosteroid and cytotoxic medicines.

Corticosteroids help reduce inflammation in your blood vessels. Examples of corticosteroids are prednisone, prednisolone, and methylprednisolone.

Cytotoxic medicines may be prescribed if vasculitis is severe or if corticosteroids don't work well. Cytotoxic medicines kill the cells that are causing the inflammation. Examples of these medicines are azathioprine, methotrexate, and cyclophosphamide.

Your doctor may prescribe both corticosteroids and cytotoxic medicines.

Other treatments may be used for certain types of vasculitis. For example, the standard treatment for Kawasaki disease is high-dose aspirin and immune globulin. Immune globulin is a medicine given intravenously (injected into a vein).

Certain types of vasculitis may require surgery to remove aneurysms that have formed as a result of the condition. (An aneurysm is an abnormal bulge in the wall of a blood vessel.)

More talk about tuesday posts can be found here.

Sunday Grains of Gratitude........

This is this weeks list.

1. for rain
2. For low pain time each day
3. for getting homework done each day
4. For good books

Thought for the day

Finish every day and be done with it. You have done what you could. Some blunders and absurdities no doubt have crept in; forget them as soon as you can. Tomorrow is a new day; begin it well and serenely and with too high a spirit to be cumbered with your old nonsense. This day is all that is good and fair. It is too dear, with its hopes and invitations, to waste a moment on yesterdays.

Ralph Waldo Emerson

Lucky

Today is blogging against disablism day 2009 which I find ironic considering what happened to me today. On Fridays I attend the local TAFE. It is a very small place so I know most of the teachers and students fairly well. At break time the art teacher came up to me and said (as she has many times before)“ You’re so lucky to have that chair, I wish I had one” I asked why she thought I was so lucky and she said “You don’t have to deal with crowds, you don’t have to walk around and you get to sit down all day”.

I wasn’t sure what to say and sort of sat there with my mouth hanging open for a second. I then said. “ it sounds like you must be having a bad day but think about some of the stuff I have to deal with because of the chair. I need help doing simple things like opening doors and I have to deal with people staring and treating me like I cannot talk or do anything because I am in a chair. Take a ride in my wheels for a week then tell me I’m lucky. And by the way you have a sore rear end when you sit on it all day without really moving”. She very quickly left the room and I’ll bet she thinks twice before deciding people are lucky to have wheelchairs from now on. I feel a bit bad now and that I sort of overreacted but it isn’t the first time she has said something and I just had enough.

Table Tennis

On Monday night I attended a come and try night for table tennis about an hour away from where I live. The program is designed for people with varying abilities and skill levels but as is the case at most of the things like this that I attend, I was the only wheelchair user.

When my carer and I arrived I introduced myself to the person who seemed to be in charge and then explained that I had never played table tennis before. The guy looked at me in my wheelchair and was immediately negative “ your chair won’t fit through the gates here” and suggested that maybe they would set me up in another room. I thought that would be stupid as the nights are supposed to be a social opportunity as well. So I suggested that we try the gate and I fitted. The guy decided he would play with me but only did so for about 5 minutes before leaving me. I stood around a fair while before somebody else came to play with me.

We played for about 20 minutes and then they guy in charge came back over and spoke to my carer. “Being in the chair Karen won’t be able to participate in the last 15 minutes. Take her over there and let her watch”. The last 15 minutes consisted of everyone lining up and taking one turn at hitting the ball before going to the back of the line- the line would then be gone back through with a person being eliminated until there was a winner left.

There was no reason why I couldn’t have moved trough the line with the help of my carer. I felt like they just didn’t want to include me which was kind of strange when the time is supposed to be about including people of all abilities not just those with intellectual disabilities.

So all in all, while the table tennis was fun I don't think its the right place for me and I will continue my search for a new hobby.

NaBloPoMo day 30

So that's another 101 in 1001 goal completed, too.

the emperor's seed

I was sent this story and I think it's worth sharing with everyone, so it's going to be a bit long but truly worth it all.

The Emperor's Seed


An emperor in the Far East was growing old and knew it was time to choose his successor. Instead of choosing one of his assistants or his children, he decided something different.

He called young people in the kingdom together one day. He said,"It is time for me to step down and choose the next emperor. I have decided to choose one of you."

The kids were shocked! But the emperor continued. "I am going to give each one of you a seed today, one very special seed. I want you to plant the seed, water it and come back here one year from today with what you have grown from this seed. I will then judge the plants that you bring, and the one I choose will be the next emperor!"

One boy named Ling was there that day and he, like the others, received a seed. He went home and excitedly told his mother the story. She helped him get a pot and planting soil, and he planted the seed and watered it carefully.

Every day he would water it and watch to see if it had grown. After about 3 weeks, some of the other youths began to talk about their seeds and the plants that were beginning to grow. Ling kept checking his seed, but nothing ever grew. 3 weeks, 4 weeks, 5 weeks went by. Still nothing.

By now, others were talking about their plants but Ling didn't have a plant, and he felt like a failure. 6 months went by; still nothing in Ling's pot. He just knew he had killed his seed. Everyone else had trees and tall plants, but he had nothing.

Ling didn't say anything to his friends. He just kept waiting for his seed to grow. A year finally went by and all the youths of the kingdom brought their plants to the emperor for inspection.

Ling told his mother that he wsn't going to take an empty pot but his mother said he must be honest about what happened. Ling felt sick to his stomach, but he knew his mother was right.

He took his empty pot to the palace. When Ling arrived, he was amazed at the variety of plants grown by the other youths. They were beautiful, in all shapes and sizes. Ling put his empty pot on the floor and many of the other kids laughed at him. A few felt sorry for him and just said,"Hey, nice try."

When the emperor arrived, he surveyed the room and greeted the young people. Ling just tried to hide in the back. "My, what great plants, trees and flowers you have grown," said the emperor. "Today, one of you will be appointed the next emperor!"

All of a sudden, the emperor spotted Ling at the back of the room with his empty pot. He ordered his guards to bring him to the front. Ling was terrified. "The emperor knows I'm a failure! Maybe he will have me killed!"

When Ling got to the front, the Emperor asked his name. "My name is Ling," he replied. All the kids were laughing and making fun of him. The emperor asked everyone to quiet down.

He looked at Ling, and announced to the crowd, "Behold your new emperor! His name is Ling!" Ling couldn't believe it. Ling couldn't even grow his seed. How could he be the new emperor?

Then the emperor said," One year ago today, I gave everyone here a seed. I told you to take the seed, plant it, water it, and bring it back to me today. But I gave you all boiled seeds, which could not grow. All of you, except Ling, have brought me trees and plants and flowers. When you found that the seed would not grow, you substituted another seed for the one I gave you.

Ling was the only one with courage and honesty to bring me a pot with my seed in it. Therefore, he is the one who will be the emperor!"

If you plant honesty, you will reap trust.
If you plant goodness, you will reap friends.
If you plant humility, you will reap greatness.
If you plant perseverance, you will reap victory.
If you plant consideration, you will reap harmony.
If you plant hard work, you will reap success.
If you plant forgiveness, you will reap reconciliation.
If you plant openess, you will reap intimacy.
If you plant patience, you will reap improvements.
If you plant faith, you will reap miracles.

BUT....

If you plant dishonesty, you will reap distrust.
If you plant selfishness, you will reap loneliness.
If you plant pride, you will reap destruction.
If you plant envy, you will reap trouble.
If you plant laziness, you will reap stagnation.
If you plant bitterness, you will reap isolation.
If you plant greed, you will reap loss.
If you plant gossip, you will reap enemies.
If you plant worries, you will reap wrinkles.
If you plant sin, you will reap guilt.

Talk about Tuesday

This is my first attempt at Talk about Tuesday. I thought I'd talk a little bit about where I am emotionally in my life right now and where I see myself heading. I hope that it might help new readers get to know me and let people who have read my blog before a little better.

First off, I believe that I have finally got to a point in my life where I accept that I am always going to have Cerebral Palsy and need to use a wheelchair and to a certain extent be reliant on others in order to be able to live a full life. As a result of this realization I have stopped trying to fight the fact that I have carers come into my home to work with me and hopefully I am easier to work with now.

I am also beginning to understand that it is okay to ask for help and admit that I cannot do everything alone or in the way that everybody else does. To that end I think I am getting better at saying no and asking people to help me when I need it. I'm probably not doing it to the degree that I should but I guess I'll get there eventually.

I think these things are a work in progress and I'll let you all know how I go.

More Talk About Tuesday posts can be found here.

Lovers poem

Once we were lovers,
Young and free,
Together forever you said,
But then something inside you changed.

You told me that if I were a rose by any other name,
I wouldn’t blubber so much,
Or have such a cold heart.

So I shall use my head and
Try to come up with a formula
To cheat fate.
And avoid death,
It is worth the risk,
All so your name will bleed from my lips.

(C) Karen Peatt 2009

Sunday Grains of Gratitude........

This week I am grateful...

For rain. We are in drought here in Australia and the past 3 days we have had decent amounts of rain.

For good days health wise and distractions of good friends and good books on the not so good days.

What are you grateful for today?