Stumbling Blocks – Fractured Ego

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Blogging, Media, Networking, Reflection, Social Media

The last few months have been eventful, to say the least. I find myself quite elated, yet, cautious at the same time. My new infusions have brought my autoimmune disease “under control” this year. My neurologist is pleased with my progress there. I will be seeing an orthopaedic physical evaluation specialist within two weeks for botox treatments on my feet and ankles. I’m hoping treatments will improve my mobility issues. In addition, I will be seeing an orthopaedic surgeon specialist next month to evaluate my feet to see if I am even eligible for foot/ankle surgery on both feet. Past visits with specialists have revealed no solutions, as the neuro-muscular problems lied in the autoimmune condition itself.

Two weeks ago, I slipped and fell hard on my left side. After several agonizing nights, I went to urgent care. The medical doctor sent me to the hospital to get chest x-rays. They didn’t have the facility to x-ray my type of injury, as I couldn’t stand without support. A trip to the emergency room saw me several hours under a morphine iv-drip. My x-rays came back conclusive. I had four fractured ribs. They were all the middle (5 through 9) ribs and in back. Ouch! I have never cracked a rib before, much less four in a row. No wonder I was in pain!

While reading the Bible and mediating, I pondered on a Bible verse of a book, Jesus Calling*, my sister Janice had given me to read. Who knew that such a little book would have so much impact on me! It was meant to be given to me. I’m 100% certain about that now. Then the Lord spoke to me. “You can not solve your problems alone; let Me intervene and be the Healer.” I prayed that day and repented to release these burdens “stressors” off me. That I had a great deal of anxiety and stress already and I needed resolution in my heart.

The mistake that I made was that I tried to resolve the problems myself, but I couldn’t. I’m neither strong enough physically or emotionally to resist any stress coming my way.  I allowed it inside me and it upset me. My psychological ego “fractured ego” got in the way of healing as well. From Hebrews 11:6; John 4:23-24, I was allowing those thoughts damper my relationship with Jesus Christ. Remember, in my previous post, I said God is a jealous God. He wants everyone to focus their eyes on Him and not to please others. That is not easy for me. I’m a people-person and do not like or want to hurt others’ feelings.

Within days, I have never had such peace of mind. It is like a huge weight has been lifted off my shoulders. I’m not just writing about this, but I feel it in my heart. I was experiencing a spiritual warfare. One that could have very well gone the other way, but God won in the end. He is magnificent. I was weak due to medical and physical health issues. I was weakening, but God is the source. Jesus Christ can see us through anything and remove those roadblocks, if we allow Him to enter our hearts.

I’ve been enduring continuous treatments/infusions and procedures for several years. My journey seems endless, at this point. But I feel assured that Jesus Christ will get me through these “stumbling blocks” along the way. I ask Him to remove the blocks, that I can not do it on my own. I’m progressing in areas of science that were merely ideas seven to eight years ago. I see myself being well: healthy, full of energy and vigor, and walking. Yes, I said walking. I know it is just a matter of time.

*Jesus Calling, Enjoying Peace in His Presence, by Sarah Young.  Daily devotions for every day of the year.

 

 

Keto and Intermittent Fasting Diet

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

I was introduced to a new health diet early last month. It was a concept by Dr. Eric Berg to reverse autoimmune diseases. Some might be familiar with the Keto and Intermittent Fasting diet. Both are important facets of the diet. It is designed on consuming high fats, low carbs and no sugars or grains. Dr. Berg’s concept is that the body will start attacking the animal fat cells instead of one’s own cells. It is a process of decoying the body’s own defenses.

My sister Janice has been sending me links of videos on Youtube from Dr. Eric Berg. He is known internationally for his concept of Ketosis and the adrenal glands of the liver. He talks about high insulin levels around the stomach and how it relates to belly fat. That is my problem area too, especially my sides. You can find information on the Keto and Intermittent Fasting diet by clicking https://www.youtube.com/channel/UC3w193M5tYPJqF0Hi-7U-2g

FYI, I have lost several pounds within two months, ever since beginning the diet. It is not only designed for autoimmune disorders, it is for those that have other medical conditions (e.g., cancer, arthritis, kidney, thyroid, heart) or want to lose excess weight. I’m not advocating to try the Keto diet. I’m not a medical doctor nor can I give medical advice. I only know how it makes me feel – better and more energy. I usually fast 15 to 18 hours three to four days per week for the autoimmune illness. I never go past 20 hours fasting at one time, although I might try it soon. You can have some liquids during this fasting time (e.g., black coffee, tea, water, bone broth or unsweetened almond milk). The longer the body does fast without food, the more the body begins to heal itself.

DETOX: Dr. Berg recommends detoxifying the body of impurities and toxins daily. It also hastens the healing process and promotes weight loss as you diet. His focus goes for a 21-day cycle, however, I do it daily. There is a mixture of one glass water (filtered or tap), one tbsp apple cider vinegar and one tbsp lemon juice to drink three times a day.

FOODS TO AVOID: While enjoying various foods, there are foods high in carbs and sugar to avoid, such as bananas, kiwi, apples, pineapple, and peaches. For a list of restricted foods, please see the 14 worst foods to eat on a Ketogenic-diet at http://health.facty.com/food/nutrition/the-14-worst-foods-to-eat-on-a-ketogenic-diet/

Dr. Eric Berg also has a pamphlet that explains the dos and don’ts while on the Ketosis diet. Amazon offers Kindle as well. Please see https://shop.drberg.com/checkout/cart/ for any questions you might have.

Plus, Dr. Berg offers many products on his website to take daily. I especially like the nutritional yeast (powder). It comes in two forms: pills and powder. I am allergic to pill form and the powder tastes just like cheese. It takes two tbsp a day sprinkled on food or mixed in a drink and it also helps headaches. Two more supplements I take is Keto MCT Oil Powder – available unflavored, vanilla and chocolate. I love the chocolate – tastes just like cocoa. One big scoop is good with a eight-ounce glass of almond milk. It is delicious. Also, I take Electrolytes with MCT daily. It comes unflavored and one small scoop taken per meal.

Please be advised that the weight will take time to gradually come off. But it will eventually start coming off. Mine started around 4 weeks and now at my sixth week, I am really starting to lose weight. Be patient with it and yourself. You want to lose weight slowly instead of fast to prevent sudden (quirks) weight gain.

Several months ago, I weighed 145 pounds. I went down to 137 to 139 pounds a few months ago. Getting on the weight scales this morning, I weighed 129 pounds. I will continue to lose a few more pounds to cushion myself and then maintain a balanced diet. It is a lifechange and a lifestyle diet, not just a temporary diet. It is not designed for quick fixes, like losing weight for a class reunion or a social event. I’m on the diet not only for health reasons, but to save my life. I’m fighting for my life and to become healthy.

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.

 

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.

Thank You Janice!

Tags

Blogging, Reflection

First, I want to say a ‘very sorry’ to my sister Janice. She has been the one to take me to Emory Clinic every time and wheel me around the facility. Her unselfishness and her time is endless. I’m sorry for my words yesterday. I’ve been under enormous stress right now. I think everything is happening at once.

I also want to thank my sister Susan for her researching LEMS disease and finding a clinical study in the United States. It is one of few I’ve seen for primarily those diagnosed with LEMS disease. I’m waiting to hear back from the program director on options. With a lot of prayer, blood, sweat and tears, I feel it is of God, and I feel He will turn things around if only to improve quality of life.

On a more business note, I hired a new publicist this morning to advertise and market all my books online. That includes the newest one, Saga of the Ages, coming out in June. We shall see what becomes of it.

 

LEMS Study

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Blogging, Connecting, Media, Networking, Reflection, Social Media, Writers

I’m excited to announce that after six years, with my sister’s help, I have found a study primarily for those diagnosed with LEMS (Lambert Eaton Mysathenic Syndrome). The study takes place in either Miami or LA. The program manager contacted me today. He was not surprised I developed this disease from cancer. He seemed quite knowledgeable about the disease. He is trying to contact my neurologist at Emory.

There is one other option in August, GA. My sister Susan and her husband could drive me there. Also, I did find a friend in Miami who will drive with me from Ft. Lauderdale to Miami. My niece said she would drive me to the Atlanta airport. My sister Janice said she would also. Of course, a lot of prayers will be needed. It also depends if my doctor determines I am a candidate for the study.

I knew there was something out there that might help improve my quality of life or help others with this debilitating disease. I only wish it hadn’t have taken six years to find it. It is a new drug introduced that the FDA is trying to approve in the United States. It has already been approved in the European market.

I will see what develops in the next few days. Not sure at this stage when the study will begin, but I feel it will be soon. The program manager advised I will need to be placed on the drug first before the Miami study. Please keep your fingers crossed and prayers for a positive outcome. I pray this is the answer I’ve been looking for. Hopefully, it can replace my infusions one day.

No offenses were intended for friends or family members. I’m sorry if anyone was insulted with previous comments. This is an exciting moment, yet scary and emotional at the same time. Praise God for His goodness. If it is His will, the doors will open.

Sometimes I Wish I Was a Rock

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Blogging, Reflection

I do feel it is better to be an inanimate object sometimes. There seems to be no feelings, no pain, no disease and no worries. Of course there is no existence outside the physical range of things. There is no warmth or love of family and friends, no connections to reality and no thriving of life.

Yesterday, I saw another specialist at Emory in Atlanta. Apparently, my neuro-muscular disorder (LEMS) has worsened this year. My autoimmune issues are severe to very severe now. Surgery is out as the doctor said any surgery attempt would fail. My general mobility has weakened. I’m looking for a light wheelchair I can take easily in the car. The doctor was concerned about my driving. I will be driving a lot less now due to weakness in ankles. Maybe only very locally in emergency situations.

I don’t want any sympathy. I simply ask for prayer to make the right decisions. I feel it is important to spend the rest of my life enjoying time with family and friends while staying positive. I’ve always been a positive and upbeat person, but sometimes life can bring you down. Much thanks to my sister Janice who carries me to Atlanta and wheels me around Emory each time. She is a God-sent.

I don’t accept this disease and will continue on fighting it. I am a breast cancer survivor several years ago and I have lived six years since diagnosed with this disease. It is as if God is saying to me, “This too shall pass and you are okay.” I get tired of seeing doctors and specialists that don’t have the answers. I simply have come to the realization to let it be and be comforted in the fact that I have family surrounding me. Medical science can not change this condition nor cure it, but I still feel inside I can find a way to reverse it somehow and someway. I feel I will get better with time. Is that merely hopeful thinking?

I’ve finished writing my latest book, Saga of the Ages, but will not write another book until I get better control of my health issues. All I have to do now is make revisions/corrections/reviewing to the manuscript before submitting to the publisher. I ask for prayer in that direction too, in book sales and gaining notoriety as an author and writer.

A Good Day

Tags

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.