Tuesday, November 7, 2017

The traumas of self publishing

Self Publishing your first book is very complicated. Finally resolving some printing issues. And the Book will be back into publication soon. Thank you to those who have purchased. I look forward to sharing my journey with you.



Tuesday, October 31, 2017

The Mirrored Image of Me: A Physical and Spiritual Journey with Chronic Illness

https://www.amazon.com/dp/1978149689/ref=cm_sw_su_dp

The Mirrored Image of Me: A Physical and Spiritual Journey with Chronic Illness Paperback – October 31, 2017


This Journey started as early as 2008. It was then She became painfully aware of her plummeting overall physical health. Frantically witnessing the then crippling loss of muscle strength. And the devastating plunge into respiratory collapse. Blinded by the warning signs of Myasthenia Gravis Crisis. Mired in terror of the insidious lurking disease. But it would only be the beginning, of the complete tailspin her life was taking. And the miraculous vision set in motion towards her healing. As her Faith in God. Takes her beyond her physical image revealing a Spiritual Being.

Thursday, March 30, 2017

IN TIMES OF CRISIS......

IT IS A GAME OF BALANCE

Living with Myasthenia Gravis is to know it is a Chronic Disease. And Chronic diseases  persists over a long period. So with that being said. I still have periods of exacerbation resulting in particular symptoms. In managing my illness I try to play close attention to symptoms. Because they are MY red flags.

I manage by listening close to my body. Myasthenia Gravis has some characteristic documented symptoms.
Your eyes are affected first.This disease tends to attack muscle groups used for movement, meaning they are muscles that you have voluntary control of. Weakness can often be detected in the eyelids first, and the weakness can cause one or both eyelids to droop.

It affects the way I walk and My ability to breathe at times.
I personally use a walking cane. I also use a rolling walker. When out shopping I use any of the public electric wheelchairs. They aid me with stability and balance.
Perhaps the worst-case scenario, the disease affects my ability to breathe (from weakness of My chest muscles), causing what is called a “myasthenic crisis” – which is a medical emergency.

Here I am receiving an IVIG Infusion.
One of the weirder things I learned about Myasthenia. Is it's called the over 40 disease. I could some how feel offended by this fact. Had I not been diagnosed when I was in my late 40s. That being said, it’s quite a rare condition, affecting only about 20 people per 100,000 in the U.S. http://myasthenia.org/

 Symptoms of Myasthenia Gravis (or MG) tend to worsen over longer periods of time.  This fact qualifies it as a Progressive disease. My symptoms can fluctuate on a daily basis. I like a majority of people with MG. After repeated muscle use, I will experience increased weakness in the evenings.

Myasthenia Gravis is also an Autoimmune Disease. Basically My body’s immune system (which normally destroys foreign substances) mistakenly attacks My healthy tissues.  There is a specific area of the nerve that is affected. Which leads to less responsiveness and the feeling of weakness in Our affected muscles. 

One of the ways that MG is diagnosed. The doctor can order a special blood test to show if there are elevated levels of the antibodies. This for me was the definitive test. In confirming I actually had MG. Their are other test that are also used in diagnoses.

And finally there are treatment options. There are no complete fixes available for MG, but doctors have some tools at their disposal to combat this disease. For example, A doctor may choose to go the medication route, prescribing corticosteroids and immunosuppressants that lessen the autoimmune severity. 
There is also a treatment called Immunoglobulin Therapy (IVIG). Immunoglobulins are the antibodies of the immune system. In the picture I shared a early morning infusion appointment. Don't know why I did but here it is. So this is me so....Until Next Time...HOW YOU LIVIN?

Thursday, March 23, 2017

How I maintain my Fashion Sense with a Tracheostomy

THERE IS AN ANSWER FOR EVERYTHING

As I Continue to find my place in my new word. I tend to need to find projects that make me feel useful. This is after spending a major part of my life as a care giver. But I also had a creative nature.statement. "Necessity  is the mother of invention" while having to work myself out of my tracheotomy. I be came very creative with disguising the site. What has always been very therapeutic for me. Has been remember to remain myself. And what has always been something I loved is Fashion. And my expression of it. So although I could have one of the most unflattering things. A hole in my throat with a piece of plastic. That need to be changed daily. Because of the saliva and mucus that could seep out. Have I made you sick yet? I too had my preconceived notions of what some one looked like with a trach. And how people stared in pity or disgust. That was one of the things I had to overcome. Ironically, as a new nurse I was deathly frightened of tracheotomy. And I made it my mission to avoid them at all cost.
Until the nursing home... No one told me that there was a huge chance I would with a trach. I had a very good friend at work. A seasoned vet in Nursing home work. As I said before my career up until then was free of trachs. She held my had and walk me back through trach care. With the patience of a Saint I tell ya! And not to mention the great patient I had as well. He seemed compassionate toward me and my fear. I actually could not have had a better first. Although he could not talk his eye told me. He even shared a bit of his sense of humor with me. The thing about trach for me was the gagging. During the process of deep suctioning this was always possibility. That is what frightened me the most. Well, my patient listened during the conversations with my nurse friend. As I explained to her what bothered me about trachs. On a particular assignment I with all strength I could muster performed trach care alone. My Patient on the other hand saw an opportunity to traumatize me. While deep suctioning my way. He began to gag uncontrollably. Which of course sent me into a nervous fit. I began to run for help. And he began to silently laugh and wave his hands in the air. In a motion of surrender.

In this picture I still had my tracheotomy. But I was able now to breathe unassisted. Although it is not covered as of yet. I had already accessorized my self in preparation for a Doctors appointment.      -----------------------------------------------------------------------------------------------------------------------------------------------------------------

Hear I still had the trach. But I am able to cap it
My son drove me to church capped.
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_ I was so excited with regaining some of the normalcy in my Life. That trach cared no more weight with me. I simply worked around it  The day came when the trach was finally pulled out. The plan was for me the hole to close on it's on. So Now I had to clean the stoma. Which is worst you ask me? The trach or the stoma. Hard to tell, they are both so un natural. So now I had to accessorize a stoma.



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Here I am out celebrating the trach removal. Out with my former Home Health Nurse And one of my Older daughter. We were able to secure seats at a very exclusive restaurant downtown. And as luck would have it. The city was entertaining Restaurant Week. And we were able to eat a 4 course meal for a very reasonable price.





 One thing I discovered My sense of taste was altered during this journey. Although we sat in this great restaurant. With an excellent menu for the bonus price we paid. I just could appreciate the multitude of flavors presented before me. But the company was great. And being out of the house period was great. It definitely was a reason to celebrate. And it definitely will go down as a Major milestone in my recovery. Until you have got a plastic tube inserted into your neck. I can't possibly provide you with any scenarios to compare. But Happy we all can share in that.
It would appear my Jewelry making would once again come to my rescue. So then I had to create neck accessories to distract from the bandage. And also look cute and appropriate. But as blessed as I am. Who could have predicted that chokers were coming back in style. Right at the most opportune time. So I created chokers just for me.




Because the stoma was not closing like we had hoped. I spent a lot of time coming with ideas. You know I had to match what I was wearing. Wearing my Vintage Pittsburgh Steelers Jersey. And you did notice the matching Steelers Head Band. One more really special item. Is the hand made wig made just for me. By my friend Sharlene. Looking cute was important to my self esteem. Especially with an new problem hiding in then shadows.
 After a follow up examination with my ENT. It was officially noted That My stoma was not closing on it's own. And I would need to have it surgically closed. So now I was looking at surgery. But as a person with Myasthenia Gravis. We always have be aware of anesthesia. There are several in the "Black Box." These hold a list of medications that may and could worsen Our condition. So I spoke with my Pulmonologist and Neurologist about pending procedure. They both faxed over office notes to The ENT. I meet with the Anesthesiologist about my concerns. They did some research on what I tolerated for prior procedures.
Here I am with the Bandage from the surgery. And a big smile. I did ask the ENT if he could tighten up my neck skin a bit. I actually lost weight around the trach opening. But he said he would try.............



Still smiling Life is Beautiful.............




On my way to Church. What a Beautiful Sunday that was. All Praise to God!

Of course some of the jewelry seen is available at:
jewelrybycash.com



Wednesday, March 15, 2017

My Dmv Horror story.

 My fight for Independence

Since I  have  by the Grace of God. Survived my last huge Myasthenic Crisis.  I am beginning to gradually  take hold of my life again. Up until now I  had been driven back and forth by my Children. Because of the Ventilator that I used to assist my breathing. And the attached oxygen tank,suction machine and walker. Yes I was a traveling hospital room. As my health slowly improved and I put away equipment. And I no longer had my car/ambulance driver/kids to take me around. The Doctor appointments didn't stop. So I  realize it was time to drive.
Well it appeared that I missed my drivers license renewal. And that meant a trip to (A loud Scream) The DMV. My daughter and I decided on a day to go to DMW for my license renewal. I went with all the paperwork I thought I would need to complete this task. We waited in line(at the DMV there is always a line) patiently. I made it to the desk and explained my situation. I then told I did not have enough to renew my license. I was missing the proof of residence. So I need a utility bill or bank statement. I thought that would be a easy fix. Being that I could download a statement from my online bank account. So that day I left without my license.
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My first trip to church since my crisis. Here you will see I have a Tracheotomy still in place. The purple thing is my passey Muir valve. It allowed me to speak thru the trach. And the Beautiful woman in the back ground is my Oldest Daughter. She and I were attending a Mother and Daughter Breakfast at church. The tickets were gifts from one of my church sisters (hi Patsy)
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We took a chance my daughter and I, went back the next day. Found my place in the line. Made it to the counter this time I had brought all the information I was told I needed. I felt proud, I am not going to lie. I just knew this was a done deal.Well I also brought my paperwork to renew my Handicap parking sticker as well. As a person with Myasthenia Gravis you can certainly understand. And outing can be totally reunited for me when most of my energy is taking walking from the parking lot. Well to my total surprise after making it to the second window.I was told my expired license and I would need tom take written test again. But because of the time of day it would be to late to do so today. So my daughter plan another trip back for me to take written test.
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Here I am out on my back deck enjoying the sun. It was the first time I had been outside breathing on my own. My pose in this picture conveniently covers the trach.
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I can't say I was a tiny bit nervous. I had not take the written drivers exam since I was 18 years old. And I struggled with study or not study. The struggle became an issue since I opted to not get manual. Well the manual is no longer free to public. The cost is $5 as I recall. My ego would not allow me to pay the cost. So I didn't study. On day of the exam I felt real secure. Well security is not all I needed. To my dismay I failed the test by 1 question. So guess what I needed to do? You guessed it. Return once again to pay my fee and retake the test. Yes, this time I did pass the test. Good news right. Not exactly I the n saw the other shoe drop. I only then was told I would also have to take the drivers test over as well. And the limited amount of slots at my small local office. But I was given options to utilize one of the bigger DMV offices. That meant also arranging a another day. Where my daughter would be available to transport me. Well her schedule changed and I never took that road test.
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While dealing with my forced home imprisonment. I experimented with a new median. I created these cloth necklaces. I love bright colors. I guess you can tell. They have unfinished ends. In a natural like appearance. I guess for me it works with the African prints. You can purchase them at the link below. They are one of a kind.
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So I still had my old expired drivers license. I had been using it for identification all this time. Well I was out with my Dad visiting from Germany. I was required to show my Identification. I pulled out my expired driver's license. Well the expired driver's license date was noticed. And I was unable to proceed. Needless to say my dad was a little embarrassed and curious. So I told him The DMV Story. But I still needed to get some Identification. I was no where near my home DMV. So I needed to use the nearest office. They are all the same right. WRONG! I walked in thinking I could get an ID card or my Drivers Permit. Well this branch of the DMV didn't have in their computer that I passed the driver permit test. Being the slacker that I am. I didn't have the receipt in my purse. That would have been all they needed. So I needed to provide again some of the information I did in the beginning. I left the DMV once more. 
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Here are a few more pictures of the necklaces I have made.







I returned with the information that was required. And to my surprise I was able to get my drivers permit. Go figure. So I took my picture. And asked the clerk what were my driving restrictions? I was told my permit was good for a year. And that I had no driving restrictions. So then I  asked myself. If I can drive my car like a licensed driver with a permit. Why I could not receive my drivers license in the beginning. Nightmare over, I am awake and ready to be released from house jail.

Saturday, March 11, 2017

The reason I go on.

Originally I started Jewelry by La cash Handmade wood jewelry and accessories. As an outlet for my creative aspirations. This was before I even was diagnosed with Myasthenia Gravis. I was becoming fed up with being in the grind of the work force. And I need to seek out the freedom associated with being your own boss.
Fast forward another 10 -15 years. And now that same passion provided me with a reason. I saw it as work and I was on a job. I found ways to show and sale my jewelry to the public. I became a member of the designer,fashion show, model world. I became privy to the most current vendor affairs. And was seen at the most popular events at the time. Then my health took another unexpected turn. As is the case with the un predictability of a Chronic disease. And I was unable to do the fashion shows. No energy to work the vendor affairs. No desire to create any new designs. And lacked the creative juice to conceive any new concepts.
But the shear joy of having customer to purchase and wear my jewelry. Was enough to recreate the desire of the beginning. So working with the loss of my hair and the weakness associated with chemotherapy. I used my creative nature to push me through. It once again became my reason to get out of bed each morning. With my increasing physical weakness I took to the internet. I decided to move my kitchen business on to the web. I uploaded my pictures on to a an Online store.
Then it became imperative to get folks to my website to purchase my items.
.jewelrybycash.com

So then educating my self about the tools to draw an internet crowd became important. Marketing via Facebook became the norm. Exploring the available applications to make professional looking graphics. Thinking a mini mogul. I saw the need to diversify. So I added thing s to my site like Sunshades.
Putting all this work I placed in this online store. Helped me to function as I lived with Myasthenia Gravis. I still went through occasional treatments. Like IVIG when I experienced increased symptoms. Not handled by Mestinon. A Chronic disease is just that Chronic. So it is expected to endure flair-ups. But in between I worked on living my way. So from this point on I will be sharing more of How I Live with Myasthenia Gravis.
Today I was completed to right because of a thought. I realize I work hard on making my kitchen business successful. Not for me but for my grown children. I have this crazy notion of leaving my children a legacy. Jewelry by LaCash. Even though now they have little to no interest in it currently. But a financial in heritage is always useful.
By finally understanding the reason I do what I do. Can be very liberating. It is good when you can identify
our on motives. So now I will end here until next time.