No One Said Life Was Easy

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Blogging, Inspirational, Networking

I’m sitting at the computer and not sure what to write. It has been an eventful week already. I got a good report from my neurologist on Tuesday.  The shakiness and weakness I’ve been feeling was not due to my new rituxan infusions; it was more viral in nature, according to my doctor. Rituxan is used to treat certain chronic auto immune disorders and blood disorders/cancers, like leukemia and Non-Hodkins Lymphoma.

I have been falling lately (knees buckle) and getting dizzy while standing up for the past few weeks. I’ve also been bedridden this past week. I thought it was a reaction to my previous infusion in May, but the doctor had a difference in opinion. Although my neurologist is a very good doctor and now Director of Neurology, I still feel some of this illness was caused by the new infusions. There could have been a virus ‘bug’ as well.

Anyway, the moral of the story is that one has to be their best advocate. The individual knows his or her body best. I knew that I felt different after infusions. The doctor advised I was getting standard medication in appropriate increments, both in quantity and frequency. Yet, it is unlikely I will be going off rituxan anytime soon or in the near future.

“No one said life was easy.” This is a true statement. Life gets tough sometimes; we just need to roll with the punches. At times, there is discouragement; even I get discouraged, but find myself bouncing back. I’m not ready to leave this earth yet. I’m still believing that one day there will be a possible cure for my autoimmune disease and cancer. You have to believe in yourself with God’s help and wisdom to get through the tough times.

The other thing I realize is that one has to stop playing the victim role. A perfect example is myself. I don’t want to identify with my disease, rather it is something I can overcome someday. The important concept is to simply enjoy life – even as it comes. There will be rocky roads and bumps along the way with twists and turns. However, one can overcome them with determination.

The mind is a powerful weapon. I have learned the brain and the mind are two different things (Dr. Caroline Leaf). The brain is a physical vortex, which coordinates speech, mobility, language and other various functions within our body, whereas the mind is what one perceives. Physical and emotional healing can come through the mind. I see myself walking normally one day without assistance or support, strength in my muscles and nerves are healed.

The most important thing is to not get down when life doesn’t always go your way. God is in control. He will lead us out of this ‘valley’ of discouragement and conflict. Don’t listen to others that criticize or belittle you. Always follow your heart and don’t give up your dreams for anyone or anything. Take a breather and do something for yourself today – take a walk in a pretty setting, go to the park, watch a new movie at the theater, get a haircut or new hairstyle or enjoy watching the sunset. In summary, be well and happy, my friends.

 

 

 

 

Tips for New Writers and Authors

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Authors, Blogging, Inspirational, Marketing, Networking, Reflection, Writers

I have been writing for five years. In the beginning, I was clueless. No one took the time to sit down to tell me how to write a manuscript. Frankly, even a writing course does not teach you everything you need to learn in writing. As Stephen King says in On Writing, “Practical experience is better than any course on writing.” Two things he says make a writer: “Read a lot and write a lot.” Another resource I use is 11th Edition Writer’s Market Deluxe Edition, Robert Lee Brewer, Editor. There are updated editions, but I find the 11th Edition easy to follow. If you are thinking about writing a book or have written a new book already, there are some things you need to know beforehand:

1) Consider in which direction you desire to go, whether self-publishing or traditional publishing. I chose self-publishing for various reasons. I liked the control of the book, 100% copyrights and a shorter length of time than traditional publishing. Having not written a book before, I wanted to branch out and test the “waters” so to speak.

2) While designing your front cover, consider finding free online images instead of paying a professional artist or designer. A good source to use is Thinkstock. I believe you do not have to get prior copyrights with them. My niece is incredibly talented as an artist and has designed most of my covers; yet, expensive due to copyrights. The same is true of photos used in your book(s). In addition, written permission to copyrights by each photographer and/or artist is needed. Also, this goes with writer of blurb on back cover. Word of warning – publishers will not publish without them.

3) As far as editing, I chose to self-edit. I’ve had only one book professionally edited. It is not only quite costly, it is time-consuming. It took two months to get my edited manuscript back. It is a slow process. The editor(s) mainly gave me suggestions to guide me through the manuscript. As my senior publisher consultant advised, if your English grammar is bad or a second language, editing may be the way to go. Beyond that, one can have a second or third pair of eyes without the cost of professional editing.

4) Once you publish your book(s), consider networking through friends and family. I started out selling to family and friends. Offer a discounted rate in the beginning to get your name out in the community. I feel it is okay to give away a few books to others and give as gifts. Place an article about yourself and book(s) published in the local newspaper. This goes along with book sales too. Some writers and authors do interviews with radio shows. Others do videos online. If you don’t feel comfortable with either avenue, you will need to market locally. Market where people know you and familiar with your writing. It is easier than selling your book(s) to a complete stranger who does not know of your works.

5) There are several companies that call writers and authors, I presume from a list. They are telemarketers. I avoid them at all costs by not answering them or hanging up the phone. It is wise to list your cell phone number. If they know your home phone number, they will bug you to death. Still, there are some that get through. I prefer email, in that way I can request information from the company and the package they are selling. All of them seem to want you to buy a package. There are a few exceptions. The traditional publishing is an exception or a literary agent.

6) Remember, to do your research on the company beforehand. This can be done online. Try to find out all you can about the company before buying a package, especially if signing a contract. Never sign anything before you research. Some companies are reliable, but some are not as creditable. It is a seller’s market, so buyers beware! If you do not hear back from them in a reasonable time, this may be a scam. If you don’t feel right about something, your ‘gut feeling’ is probably right. You can usually cancel within 7 to 10 business days. This is your legal right as a buyer, no matter what the company says.

7) Have a plan to market your book(s) before publishing. Social media with a blog website, Twitter, Facebook, Pinterest and Instagram are always a good start. But more than that, devise how you will market your book(s). Book sales are promising, but if you are a new writer or author, it will take time for the community to recognize you as an accomplished writer. Ads can be costly and may not bring the results you want. However, maybe consider marketing the book by online campaign ads. Available through Amazon and Ingram, it links your book(s) to your author’s website. You can also offer a free item to interested readers or even ask for a donation.

8) It takes more than sheer ability and talent. I hate when someone says, “You got the gift of writing, what happened?” It makes me feel like a failure as a writer and author. Yet, it takes time to establish yourself in any career. Give it time and be patient. New opportunities will come along. Stay positive and it’s important to enjoy the writing process. I heard Tyler Perry say onetime in an interview that it took seven years for people to recognize his screenwriting. Now, he is a billionaire with multiple television shows and programs.

Again, practical experience is the best policy. I don’t claim to be an expert by any means. I only relate what I’ve experienced over the years. My first book I thought was probably my worst. I get better with each additional book I write. Don’t be repetitive or too wordy. I have to work on that too; I often find myself “over-expressive.” In addition, if the reader can relate the story to their life, all the better. The best thing to do, is to start writing. Most importantly, have fun while writing.

Your feedback is welcomed, negative or positive.

 

Waiting for Appointment

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Blogging, Connecting, Inspirational, Reflection, Spiritual

Today, I am waiting to get scheduled for the Augusta Medical Center again. It is frustrating as the dates the doctor is available, are not convenient for me and vice-versa. I have to rely on transportation to Augusta by others. I also need someone to help me with a wheelchair. My cousin has offered to take me the end of next week, but I do not know if I can get scheduled in that short of notice. The research office needs time to get the new drug called Amifampridine Phosphate to the office. This is the drug I mentioned before for the study of Lambert-Eaton Myasthenic Syndrome (LEMS). Actually, this is the fourth phase of the study on LEMS. The research team is trying to get FDA approval of the drug in the U.S. There is already approval in Europe.

The research team in Augusta seem to think that this drug will help me tremendously. It is designed to help with weakness though, not antibodies. I will still be required to take monthly infusions. I am trying to get approval from insurance to be changed to Rituxan. It would require infusions every 3 monthly instead of monthly. I have been getting IVG-Gammagard infusions monthly for over six years. IVG-Gammagard is produced from donor blood cells to replenish good antibodies to the blood system. I have to sign a consent form, even now, to be administered the drug. Fortunately, the donor blood is screened and filtered for disease and blood conditions. Rituxan is used for patients suffering from autoimmune disorders and chronic blood cancers, such as leukemia. My neurologist at Emory seems to think it will have a good effect on my condition. It interacts with the B-Cells, putting in good antibodies into the blood stream, which my cells no longer produce.

Though frustrating, I am at a stage in life that whatever I try, it will not harm me. What do I have to lose? I have been on a long journey to find healing for this disease. I rely on God and His power to heal me, but the waiting period is intensified during this time. I am blessed to be alive and grateful to those who donate blood. Without their kindness and consideration, there would be no other treatment for this dreaded disorder.

I am most thankful to God; I believe His peace and comfort are upon me. His grace has shined upon me. I am a believer in Jesus Christ; I believe in His healing touch. I believe in the Word of God. It is a powerful sword. “If thou prays in His namesake, thou will be done.”

For all, I hope you have a wonderful weekend. May God shine His many blessings upon you. May we find security and comfort as we walk through life.

 

Update on LEMS Study

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Blogging, Inspirational, Media, Networking, Social Media

Today, I heard from the medical center that will be screening initially for the LEMS Study in Miami. Instead of Columbus, Ohio, I will be going to the Augusta Medical Center in Georgia. It is a lot closer and saves on traveling time. I will be able to drive it instead of taking air flights. I registered in their system this morning. The program director said she would call me within the next few weeks to schedule an appointment. From protocol, I will be screened first, then come back to medical center to be placed on the drug. I remain on the drug for a full month and then head to Miami for the study. It takes between 5 and 12 days, so I assume up to two weeks.

This is a good indication that I am approved already for the study. I will learn more as I continue through the screening process. I give God all the praise; He is so good. Thanks for all the prayers, encouragement, support and well-wishes going up in His name. Now, to have my health totally restored and my mobility much improved. Do you believe in miracles? I certainly do.

Life Has Its Ups and Downs

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Blogging, Inspirational, Reflection

Over the past few months, I have missed blogging. I’m trying to write weekly now, if not daily. I must admit I’ve been in a fog for over a week and an emotional roller-coaster. Truth is, I had a (pretty) bad medical report last week; one I wish I hadn’t heard. The doctor was sincere I feel. I asked him not to sugar-coat anything. Another specialist at Emory and another opinion. I get sick of opinions, but this one I have to agree with. The doctor feels my disease is worsening and is progressive. Any attempts at surgery wouldn’t work due to nature of the disease. I’m basically stuck, where I am, in a dilemma of medical science and seeking a medical cure or a reversal of this debilitating disease.

Problem is, there is none known in the medical field. I’m anticipating a contact for the LEMS study soon, but have yet to hear back from the program director. As a doctor told me once a few years ago, consider yourself disabled the rest of your life. I consider myself fortunate not to be bed-ridden or getting infusions weekly, although I get them monthly. It is a little discouraging at best, yet I’ve tried to stay positive. I sound like a broken record right now, but I am gradually losing hope for the future. It is a terrible place to be in. While I don’t want pity or sympathy, I do need an outlet; otherwise, I would sit in self-pity.

Writing has become an outlet, one I can self-medicate myself. It is a type of self-therapy. One of the primary reasons I first started writing four years ago, as well as closure to personal issues in my life. It was a channel to search for answers. It keeps my mind off my health problems and my chronic pain. Believe me, I would rather be enjoying a day at the mountains nearby or the park. I love natural scenery and places. The sun is out today and lovely, bright and sunny. One of the few days we have had this week without an overcast and dark clouds.

I am blessed to have family close by, one I can seek comfort in. They have been supportive all these years. My family keeps me going and yet, I seek another source. I feel it is all in God’s hands. Only He can open those doors, health-wise and through my books. I believe He wants a stronger relationship with me. That has been one of the purposes of my illness(es).

While I do not want sadness, I do want compassion and understanding. These are challenging times. I have never felt so much stress as now. At times, I want to ask, “Where are you God?” I do feel His presence and feel His strength. I have no other choice, but to rely on Him, and yet one day I feel He will heal me completely and I will be whole again.

In closure, have a wonderful Memorial weekend and holiday. Share time with your family and friends. Enjoy the fellowship and praise God for another day. Reflect on the good things in life: happiness, love and laughter. None of us know the time we have left on this earth.

Update On Study

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Blogging, Inspirational, Reflection

It has been a week since I first learned of the clinical study in LEMS disease. I am waiting and hoping to hear something soon. Although I don’t like the wait, this is teaching me to be more patient with myself and others. Patience is not actually my virtue. From what I understand by talking to the program director, I will be placed on amifampridine phosphate (Firdapse) before entering the study. There is more information that explains LEMS and the drug administration at https://globalgenes.org/raredaily/introducing-the-first-4-lems-study/

This gal learned something (not so new) today. Let’s just say it taught me a good life lesson. I’ve learned not to sign anything – contract and all – unless you read the dotted line (between the lines). Something I thought I was too smart to avoid, but it taught me not to assume anything beforehand.

Nonetheless, I am still looking for a marketer again to market my books online. There are many scams out there and “get-rich quick” schemes. Authors are scammed, not to say I was scammed. But I rely on my intuition to determine if I’m making the right decision. I’ve learned over the years to trust that “gut” feeling. I am getting tired of promises made and no results (or increase in book sales).

I’ve had several publishers call me in the last few months, each one with wonderful things to say. But that is just it, they are just statements to get one’s money. All I want to say is Authors Beware – research the publisher beforehand and look at what other authors have to say about the company or organization. Positive feedback is important.

There are good publishing and marketing companies. It takes time to find them, but there are reputable ones. Do your homework beforehand. Ask around – networking with friends and word of mouth is the best way. My uncle and friend recommended a publisher they had worked with in the past.

Other than that, I will shut up for now. I hope everyone has a good and blessed weekend. I will keep you updated on study. Hopefully, I will be a candidate for the LEMS study very soon. I’ve seen few studies on LEMS and the research shows less than 2% of the population are diagnosed. There could be more of those not diagnosed or not documented cases.

A Good Day

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Inspirational, Networking, Reflection

As promised, I am trying to blog weekly, if not daily. I’ve missed blogging so much. It not only gives me a social outlet, it helps to connect to others around the world. Although my philosophy may not be the same as others, I do express my own opinions and thoughts as I see them. Remember, these are just my opinions and not reflective of others’ or bias in anyway.

My mother is getting stronger everyday. A week home from the hospital, she is now up and around again. A different story than last month, as I saw her weakening and barely able to walk across the floor. The realization that I almost lost my mother is a sad one. Nevertheless, the three trips to the hospital since early February seem to have diminished. Let’s hope they stay that way.

I feel accomplished and I may say honking my own horn, proud to have created another book. This is my eighth book within four years. I couldn’t have done it though without the help of others. My publishers have been wonderful. They are a bit on the expensive side, but when you get a publisher that works, stick with them.

It is a beautiful and sunny day and the weekend brings in the beauty and warmth of springtime. The robins are scrambling on the ground and young birds chirping in their nest. The trees are about to bear fruit as blossoms are starting to appear. The bulbs are in the ground, ready to be replanted. A sign that wintertime is over this season.

I will leave you with this thought. When circumstances get a bit overwhelming in life, just remember that “This too shall pass.” Sometimes life brings us challenges suddenly without warning, but we have to get off the ground and start over again. This was a hard lesson I had to learn these past few months. You will be the wiser and the stronger person for it.

Mom is Home Now

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Blogging, Connecting, Inspirational, Media, Networking, Reflection, Social Media

Yes, I’m happy to report that my mother came home from the hospital this afternoon. She seems to be doing okay, but very sore from surgery. I think she is feeling a little better. She doesn’t look as weak as when she went into the hospital last week. She is taking new medications and seems a little bit stronger than before.

Thank you guys for all your prayers, well-wishes, encouragement and support. They mean a lot and much appreciated. It is good to be blogging again and connected to others. Stay well and have a great weekend everyone. Please continue to pray that my mother’s blood clot will soon dissolve in her right atrium.

A Roller Coaster Ride

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Blogging, Inspirational, Networking, Reflection, Social Media

It has been an ‘up and down’ roller coaster ride today. My mother went into surgery just after noontime. She had a mild heart ablation with a new pacemaker implanted. That was decided on Tuesday due to her advanced age and weakened heart. She came out of surgery around 2:00 p.m. and has been in recovery this afternoon. Last word I heard is that she is in a regular room now, but still in pain from her surgery.

Thank you for your continuous prayers and well-wishes. Please keep the prayers coming. God is good and will see my mother through this. Now the healing process starts.

Working on Next Book

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Blogging, Books, Creativity, Fiction, Inspirational, Novels, Writing

Pyramid with Sphinx, Egypt

I’m presently working on my sixth book and third novel. If you like the bizarre, the exotic and adventure, this is the book for you. It is filled with suspense with a time-element that illuminates past history as well as the present. This book takes you to Cairo, where a series of life-changing events take place in the main character’s life. Faced with circumstances in early childhood, she becomes aware of her destiny in a true to life chain of events. Shattered Dreams gives that effect of shattered dreams over a period of time. Look for it this spring.