Chasing my Dream

Wow, I have been so engrossed by my creative process. I have not been writing. My hearts desire has always been fashion. I have long for the outlet to express this need. I have always been a n accessory girl. Well I am on a driven mission to complete 5-6 looks for an up coming fashion show. I thank God for a functioning mind. I may at times have a weakened body but my mind is popping!........lol  The last week or so had me down because of a sinus infection. I have completed my antibiotics and I am feeling better. Wishing you a Great Day!

There is no Sin in getting weary, the Sin is in giving up!

How I Live with Myasthenia Gravis: Manuvering the Waters of My Life. http://ping.fm/uC709

Who gets myasthenia gravis?

Myasthenia gravis occurs in all ethnic groups and both genders. It most commonly affects young adult women (under 40) and older men (over 60), but it can occur at any age.

In neonatal myasthenia, the fetus may acquire immune proteins (antibodies) from a mother affected with myasthenia gravis. Generally, cases of neonatal myasthenia gravis are temporary and the child's symptoms usually disappear within 2-3 months after birth. Other children develop myasthenia gravis indistinguishable from adults. Myasthenia gravis in juveniles is uncommon.

Myasthenia gravis is not directly inherited nor is it contagious. Occasionally, the disease may occur in more than one member of the same family.

Rarely, children may show signs of congenital myasthenia or congenital myasthenic syndrome. These are not autoimmune disorders, but are caused by defective genes that produce abnormal proteins instead of those which normally would produce acetylcholine, acetylcholinesterase (the enzyme that breaks down acetylcholine), or the acetylcholine receptor and other proteins present along the muscle membrane.

What are the symptoms of myasthenia gravis?

Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and swallowing are most frequently affected. The onset of the disorder may be sudden and symptoms often are not immediately recognized as myasthenia gravis.

In most cases, the first noticeable symptom is weakness of the eye muscles. In others, difficulty in swallowing and slurred speech may be the first signs. The degree of muscle weakness involved in myasthenia gravis varies greatly among individuals, ranging from a localized form limited to eye muscles (ocular myasthenia), to a severe or generalized form in which many muscles—sometimes including those that control breathing—are affected. Symptoms, which vary in type and severity, may include a drooping of one or both eyelids (ptosis), blurred or double vision (diplopia) due to weakness of the muscles that control eye movements, unstable or waddling gait, a change in facial expression, difficulty in swallowing, shortness of breath, impaired speech (dysarthria), and weakness is the arms, hands, fingers, legs, and neck.

What causes myasthenia gravis?

Myasthenia gravis is caused by a defect in the transmission of nerve impulses to muscles. It occurs when normal communication between the nerve and muscle is interrupted at the neuromuscular junction—the place where nerve cells connect with the muscles they control. Normally when impulses travel down the nerve, the nerve endings release a neurotransmitter substance called acetylcholine. Acetylcholine travels from the neuromuscular junction and binds to acetylcholine receptors which are activated and generate a muscle contraction.

In myasthenia gravis, antibodies block, alter, or destroy the receptors for acetylcholine at the neuromuscular junction, which prevents the muscle contraction from occurring. These antibodies are produced by the body's own immune system. Myasthenia gravis is an autoimmune disease because the immune system—which normally protects the body from foreign organisms—mistakenly attacks itself.

Checking In

Wow had not realized so many days had gone by since last post.I have been so into this jewelry line I am developing. I do not realize how quickly the days go. I have been offered an opportunity to showcase my Jewelry. I am really excited about it. I find it really difficult to transfer my ideas into the finished product.

Health wise, I have a doctor appoint with my primary care giver on Wednesday. I need to discuss my respiratory involvement. It is frustrating at times when I am at rest and short of breath. Most noticeable when winded during speech.So I am seeking a specialist in this area.

I Do Have My Days.

Yes, there are days I do not feel well. Today is one of those days. I am a little sluggish and slow moving. My attitude remains the same about my life. But I am very selective in the activities I participate into. On these days I have tendency to become disappointed in myself. Because I still have the same projects. But I am slightly hindered to complete them. This is all for today. Just thought I would check in.

I too am a Creator

I realize that I am a child of God. Because I to find great joy in creating. But my accomplishments are slightly less than the creation of man.... lol But I have found the time to concentrate on a true love of mine,  jewelry. Well I have spent the last few days working hard. The ideas have flowed freely and often. So my new site is Jewelry by la Cash . It is located  on Big Cartel as Jewelrybycash.bigcartel.com  See you there.

JEWELRY BY LA CASH

Manuvering the Waters of My Life.

Sometimes, when we walk along the edge  of  life we fall into the water. And we need to make some quick decisions. Decisions on the  course of action , as it relates to our dilemma. At this point  there are 3 choices available to us.

1.  We could flounder about the waters uncontrollably - Making plenty of noise and getting no where. All words with no attached actions indicating no advancement. Only to later drown our selves with in the circumstances that were presented to us.
2.   We can float in the waters of our circumstances-. Making no decisions  at all to effect change.As you remain  un involved doing nothing. You have become satisfied  with  your place in Life. Not learning  or growing from your current condition.
3.  We tap the strength from within ourselves-. Making the effort to  swim to the shore.Summing up the fighter that is within you. Throwing all caution to the wind. Setting your sights on what is ahead. Because we know that is where life is waiting.

I have chosen to swim to the shore . And here is my life with M. G.

You Don"t Look sick

Most recently I went for a Chest CT. While the technician was drawing my blood we struck up a conversation. We spoke of my current condition and my former occupation. I shared I was currently retired and receiving disability. She offered up a story about a former patient. Apparently this patient had a diagnosis of pancreatic cancer and was tube feed. Her physical appearance was altered by the disease and she wore a bag on her side.And for what ever reason she was unable to receive any Social Security disability. My heart went out to this woman immediately because any affliction is devastating. The technician then went on to say,"If you were to walk in to the Social Security office they would not give you any disability monies" She immediately per-judged me from my appearance. I guess if I had been more disheveled and much more depressed I would appear more deserving. A similar attitude is given when I use the electric wheel chairs that are now offered in department and grocery stores. Or even when I utilize the handicap parking that I have been approved. What is not seen is the effort it takes to get dressed. Or that when I feel up to it I take that long walk around Walmart. But I still end up short of breath. I spend 5min. or so in my car catching my breath before I pull off. Nor is it seen how Patients with Myasthenia have to make a huge effort to do the little things most people take for granite. I could go on and on. But it is not worth it. Because unfortunately complaining takes up energy I don't have.........lol

Oh how I hate Prednisone.

 One of the Medication I take to manage the Myasthenia treatment. Is a steroid called Prednisone.
Prednisone is in a class of drugs called corticosteroids. Prednisone prevents the release of substances in the body that cause inflammation. But it is also famous for it's side effects.

Get emergency medical help if you have any of these signs of an allergic reaction to prednisone: hives; difficulty breathing; swelling of your face, lips, tongue, or throat. Call your doctor at once if you have any of these serious side effects:

• blurred vision, eye pain, or seeing halos around lights;
• swelling, rapid weight gain, feeling short of breath;
• severe depression, unusual thoughts or behavior, seizure (convulsions);
• bloody or tarry stools, coughing up blood;
• pancreatitis (severe pain in your upper stomach spreading to your back, nausea and vomiting, fast heart rate);
• low potassium (confusion, uneven heart rate, extreme thirst, increased urination, leg discomfort, muscle weakness or limp feeling); or
• dangerously high blood pressure (severe headache, blurred vision, buzzing in your ears, anxiety, confusion, chest pain, shortness of breath, uneven heartbeats, seizure).

And like most people I think about the long term effects really Stink! Long-term use of high prednisone doses can lead to symptoms such as thinning skin, easy bruising, changes in the shape or location of body fat (especially in your face, neck, back, and waist), increased acne or facial hair, menstrual problems, impotence, or loss of interest in sex.

All the things  that would the strongest of women would fear. I am not interested in having my locs thin and or fall out. As we age we are prone to weight gain. So why would I want more weight gain and a beard with no desire to have sex. Oh how I hate Prednisone.

Great News!

My diagnoses of Myasthenia Gravis centered around a Thymoma, tumor of the Thymus Gland.

The thymus gland, which lies in the chest area beneath the breastbone, plays an important role in the development of the immune system in early life. Its cells form a part of the body's normal immune system. The gland is somewhat large in infants, grows gradually until puberty, and then gets smaller and is replaced by fat with age. In adults with myasthenia gravis, the thymus gland remains large and is abnormal.

Well let me get back to the good news. Thymoma have been known to grow back. ( I do not anticipate my will.) Just had a CT of the Chest> And the results are no Thymoma. Yippee!

Post op

When I arrived home from the hospital in April of 2010 I did not know what to do with myself. I had been a working American for over 20 years as a Nurse. So needless to say I was very use to being very busy. I took to writing. As a child I wrote poetry for my self mostly, Well a friend of mine had decided to do a poetry CD release party. She called me out of the blue after meeting her just once. My job was to open the show for her. I was honored and frightened at the same time. Did I mention I usually wrote poetry for me? Attached you will find a picture of me performing at "A Night of Poetic Elegance" November 2010.

I am just now  learning to unleash a new found boldness in my life. After  Myasthenia Gravis. Can we say Code: KIM ( Keep It Moving).

Support Group

Here where I live we have recently started a support group. It was shortly after my diagnosis.I find it very helpful to talk with people who understand. I will share with you an article I found. It is about participating in a support group for Myasthenia Gravis. It is from My local support group here where I live.

Why you should attend the Low Country Support Group meetings

by SC Lowcountry Myasthenia Gravis Support Group on Monday, January 10, 2011 at 3:29pm

Five Good Reasons to Attend a Patient Support Meeting

Life is busy and there is always a ‘reason’ not to attend support group meetings, but here are a few reasons to consider giving it a try:

• If you are a newly diagnosed myasthenia gravis patient, you should go because…

You will meet people who have gone through the same thing as you - people who understand!  You can learn about your choices for medical treatment and what others have done to cope with this illness.

• If you have had MG for years and know all there is to know, you should go because…You remember how it felt when you were newly diagnosed and finally found someone who knew what MG was! Just think of all the new members who could benefit from your wisdom and expertise, but only if you are there.

• If you aren’t feeling well, you should go because…

You are bound to find someone at the meeting who has experienced the
same thing. They may be able to give you suggestions on how to make
things easier for you. At the very least, you will find a room full of people who truly understand - and won’t say “But you don’t seem sick!”

• If you feel great, you should go because…

You can share some of that great feeling and optimism with others who
aren’t (yet!) that fortunate. Knowing that others have suffered the day-to-day debilitating effects of MG (not to mention major crises) are now leading ‘normal’ lives can be incredibly encouraging to those currently dealing with MG symptoms. Someone else’s good health is good news and beneficial for all of us, so come and share the good news!

• If you think meetings are boring, you should go because…

Fresh faces and fresh ideas make for exciting meetings. Bring yours to the
next one!

Adapted from: CT Chapter, August 2007/Conquer IL


Let us get started

This one of my favorite paintings "Pretty Eyes" by Tom McKinney. To me it is a symbol of my child within.A child but  experienced by life as well. It is my way of keeping my child like joy even though I am in a adult situation. Myasthenia Gravis has a way of making it's presence known. When i attempt to function as I usuaslly did. The fatique associated with MG curtails my endeavors.And I feel child like in my inabilities. So as the child in the painting can appear humbled. But there is determination that you see in those pretty eyes. It inspires me to go on, but kept the child like joy in my Heart.

How does Myasthenia effect me you ask?

Well Myasthenia Gravis is characterized by muscle weakness. Well this is where each individual differs. The muscles that are affected for me are. My right eyelid which is a normal thing in the diagnosis of Myasthenia. But the major deal breaker was my diaphragm. Which if you have not already guessed really hinders my breathing. It can play havoc with my stamina at times.So with the disease normally decreasing my activity level. I must chose my activities well. I get out of breathe at times. So on those trips with my daughters i so love at the mall i have to take a seat periodically But because of that I like doing things on the computer. One of the things i am doing now is looking to maybe sell some jewel i have handmade and design i will post some for your viewing..

What is myasthenia gravis?

Myasthenia gravis is a chronic autoimmune neuromuscular disease characterized by varying degrees of weakness of the skeletal (voluntary) muscles of the body. The name myasthenia gravis, which is Latin and Greek in origin, literally means "grave muscle weakness." With current therapies, however, most cases of myasthenia gravis are not as "grave" as the name implies. In fact, most individuals with myasthenia gravis have a normal life expectancy.

The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Certain muscles such as those that control eye and eyelid movement, facial expression, chewing, talking, and swallowing are often, but not always, involved in the disorder. The muscles that control breathing and neck and limb movements may also be affected.

CHOCOLATE CHIP COOKIE JEWELRY SWEET TREATS

www.chocolatechipcookie.bigcartel.com

GO ME!