My surgery date has finally been scheduled – July 18th. I was getting a little discouraged, thinking the doctor’s office would never call. It only took four months (being sarcastic), but as long as it’s scheduled, that is fine. I will be having a lesser surgery. No ankle surgery, but splicing the tendon to release tension in the foot. I hope it helps to alleviate the pain I’ve been having in my left foot and left knee. I will be hospitalized and then going into rehab afterward. I will be having a pre-surgery consultation at the surgeon’s office and the hospital on July 1st. I have awaited this surgery for a long time. Please remember me in your prayers.
I was all set to have foot surgery on June 5th. This has been coming for a long time. Hindsight told me that I should of had this several years ago, but didn’t. When I went into see the surgeon last Friday for a pre-surgical consultation, I was hit with a surprise. He said he had bad news for me. He explained that major surgery would be too risky for me. He wasn’t going to do the surgery at all. After a disappointing answer, I felt like I was going to cry. When I told him that my left foot continues in pain when I stand or walk on it, he reluctantly seemed genial to do a lesser procedure. He would not touch the ankle or the toes, but transport the tight tendon putting pressure on my foot. I’m literally walking on the side of my left foot because its too painful to walk on it.
Why would the surgeon have a tentative surgery date scheduled and then cancel it? Only God knows the correct answer to this question. I’m as baffled as you are. When I asked the surgery scheduler, she said that the doctor was worried about recovery time. The surgeon must have talked to my neurologist at Emory. He brought up that major surgery could make my condition worse and cause problems. Plus, the time under general anesthesia was questionable. It is advisable not to use certain drugs with LEMS. Surely, I’m not the first person with an autoimmune condition to come through his office. On the last visit before last Friday, the doctor said he had other complicated cases. Last Friday, he said I was very complicated and very high risk for that type surgery.
I’m stumped, but I know my sisters have been praying that if it isn’t God’s will, surgery would be stopped. I guess this is God’s way of say “no, not this time.” Hopefully, my condition will improve overtime. I’ve been dealing with this almost nine years. It gets old and one loses hope as time goes on. The constant infusions I wish would go away, but it’s understandable that keeps one healthy. I feel the infusions deplete me. Is it possible to find an alternative treatment? I keep praying that God will show His glory, His mercy and fill me with His Holy Spirit. I accept my fate, but I feel I need to concentrate on what I can do, not what I can’t do. Everyone handicaps me. They mean well and are just helping, but I feel I’m enabled physically. I want to say to others, “Please don’t help me unless I ask for help. I was born with a brain; I can use it.”
Other than that, I’m praying for my niece on Tuesday, who will give birth to her baby daughter. Let her get through delivery safely for her and the baby. We need more girls in the family. So far, boys have dominated in my parents’ great-grandchildren’s department. I pray for my parents. I pray for peace and contentment with family members and close friends. God Bless You as each and everyone of you go through another week. May God shed His grace on thee.
The other day, I was having a discussion with my sister. Somehow the conversation turned that I was mad at God. I didn’t say that nor meant to imply that. I do like God. In fact, I love Him. I believe I am a very intelligent person, but I put my foot in my mouth at times. On the other hand, I am also a very talented person, but seem to have problems with explaining myself. This is especially true with family members. This seems to be an emotional and stressful week for us.
I feel when there is nothing else to say, that is the time to be silent. Silence is “golden” is the rule here. After all is said and done, no one comes out the winner. How do you win a losing battle? But I do love my family. Their opinions are just that – their opinions. I respect their opinions; they need to respect mine.
This disagreement started last year with some family problems at home. The discussion led to a book I had written in the past. One family member thought the book represented an anti-God image. What it represented was the culture of Egypt and their customs. I wrote on their history, their food and their culture. There was a story too, but fictious. There was a dream denoting some dark feelings, but that was conducive to the story. The main character finds herself in a state of uncertainty until the truth is revealed in the story. It is discovered that she suffers from Lupus, an autoimmune disease. I write about the similarities with my medical condition.
However, what family members don’t realize is that I sell books that way. My books contain action, suspense and mystery. I write historical novels, fictious and created to inspire the imagination of others. That is what I write on. I like to motivate and inspire people. I am not a spiritual writer. I feel if family members want a book written on Christian “pure” ethics, they need to write a book themselves. I feel their narrowmindedness lacks the understanding to open their minds to creativity and artistic values.
While I do believe in Christ, I feel He is all around us. I feel His love and His power. I do worship Christ. I am not a fanatic; I don’t read the Bible 24 hours a day. But I do express my Christian beliefs and values through love and understanding. I feel He has brought me to write for many reasons, all good reasons. I won’t apologize for writing what I enjoy. I will continue to write as it brings me happiness and purpose in life.
As a retired teacher, I spoke to other retired teachers today. After the luncheon, there was a presentation of authors and then some book signing by authors. I was one of four authors to speak in the area. I went first. Good to do that. People generally remember the first and last speaker. You usually lose your nerve if you have to sit there and think about it.
I thought it went well. I got through the speech. There were some sober moments. An emotional flow of words, mixed in with highs and lows. But the most tortuous part was telling my story of how I got here, how I was inspired and who inspired me through life. My words spoke truth through my tears, my heart and my inner soul. I wear my emotions on my sleeves.
I just got a call from a traditional publisher about radio interviewing. True, I want to get radio interviews scheduled. I do need a way for a publisher to sponsor me. My dilemma is my medical condition, but I would like to start scheduling in the area if I could. If there are any sponsors in the metro-Atlanta area, please contact me. My trouble would be transportation outside the Atlanta area.
I’m starting to feel a little better this week. Going to Augusta to see my neurologist there on April 16. This is my last visit in the study and then every six months thereafter, if I wish to continue seeing Dr. Rivner. I prefer to keep seeing him. He has been a very helpful and knowledgeable source of information when I had no where else to turn.
Back to real life, my home physical therapist is coming tomorrow morning. I delayed occupational therapy this week due to my rigid schedule. Maybe a way to extend my physical therapy. The work over these last few weeks seemed to have help limber me up a little. I’m still stiff, but at least, I can walk across the floor now.
It has been a remarkable week. First, my father is building up his strength after suffering a stroke in the early part of December. His several weeks of recouping from his illness have gone well. Truthfully, it will take months for him to recover for a man at his age. My brother-in-law had two surgeries this past week. According to my sister, he is doing all right, just in pain right now. My mother has healed from a broken hand and my fractured ribs have mended over the last few months.
I have been looking for transportation to Emory whenever my sisters can’t take me. It is a lot to ask them and interrupt their schedules; however, I’m getting where I’m afraid to drive to Atlanta now. I found someone this past week and it is a blessing. The charges are very reasonable and she lives close by. More importantly, God provides our needs if we ask Him. In addition, on Friday I was approved home visits for infusions. It couldn’t have come at a better time. The doctor is increasing my treatments next month. The IV-Gs will be added two days monthly, as well as continuing chemotherapy for the autoimmune condition.
There are ups and downs with a chronic illness. I realized that I used to identify with the disease, but I’m working on changing that. It was my ego getting in the way. I was in a dark place. I didn’t want to get out around others or socialize for awhile. My health had worsened this past year. I was getting weaker and very depressed, as I was getting more home-bound and bedridden. My quality of life was getting very poor, but the good thing is that I still maintain hope and optimism.
I find encouragement and balance through my writing. It is therapy to me. It gets me out of my depressive state. People don’t seem to understand that it is my livelihood, my passion toward life. Sometimes, I feel discouraged by others’ comments, especially when they tell me to stop publishing books because of printing costs. When I received the derogatory remark about my books a few weeks ago, it first pierced my heart. In retrospect, it helped in publicizing my books on social media. So the person actually helped me instead of harming me. A good lesson to learn.
I hold on to faith. It is easier to give up and let this disease take over my body without treatments. A decision I was thinking about at one time. But I still resist; I still fight for life. I believe God has plans for me. If it to only encourage and inspire others, then so be it. I am amazed by His everlasting love and wisdom. I’m beginning to understand more of myself. God is good and with Him beside me, I feel comfort and determination.
I have been amiss for a couple of months, I admit. This has been a weird month with many events. They say everything comes in threes. I can tell you that is more true than imagined.
After a fall that left me with four fractured ribs in mid-October, I recovered almost fully. A lot less painful. It is as if no injury occurred at all. Last month, my mother fell and broke her hand in two places. She is doing better, but her hand is still a little painful at times. Can these falls and family health problems be coincidental? Clearly, our family has had their share of health issues this season.
My father entered the hospital the end of November, with mild pneumonia and fluid around his heart. Three days later, he suffered a stroke by a blood clot that traveled to his brain. The surgeon removed the blood clot and my father seemed to be recovering well. His speech was a little slurred at first, but after surgery, he started to regain his speech and is doing better. Thank God he is not paralyzed. One saving grace of his illness and the fact that he is still alive.
He still has a way to go, as his heart is still weak. His body is weak, yet, he stands as a testimony of faith and hope. His courage to persist with daily challenges. I am proud of my father for his determination. If a 92-year-old man is determined to live and regain strength from a weakened state, just think what others can do. It gives me hope to go on, to continue to fight my health issues.
More importantly, remembering that today is the Lord’s day – the reason for this Christmas day. May we always remember this date as a day to share with loved ones, to celebrate the birth of Jesus Christ. He is our savior and lives within our hearts.
I saw goodness today with family and loved ones. It was more than goodness, it is love. Enjoy each day as today and forgive those that have wronged us. Sometimes that is easier said than done, but with God’s help, we can continue in peace and harmony. Staying strong in His word is the key to successful living.
Merry Christmas and wishing everyone a Happy New Year! Here’s wishing best wishes that 2019 is even better than 2018.
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.
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.
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.
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.