A Puzzling Day – Makes You Wonder

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It has been a frustrating day. Not so much for myself, but for others. I find people highly stressed, given a small task. It must be in the water. Chuckle. I can only image people have their own problems in their own lives. Whatever the trouble is, it must consume them on a daily basis. Dealing with those close seem to be the worst. When I ask a favor, they give you lots of excuses not to do it. Yet, when they want a favor, they expect it done. Humph!

I’ve learned a great lesson this week.  Don’t ask for help unless someone volunteers it. There are some people very sweet and compliant. I’m not talking about those people. I’m talking about those that make you feel guilty by asking them a favor. I just wanted to express my opinion; it is my opinion only. I guess I complain too much. I will be thankful for what I have. I am really blessed!

Waiting for Appointment

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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.

 

A Long Day Already

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My cousin drove me to the Rehab Hospital today at Emory. I was measured for a power wheelchair; it will meet my needs in the long run. Also, I think a wise decision when I go out more often. It will change my world! My lack of mobility and balance have progressed over the last several years. Working on getting a new passenger van with a lift. We will see how it goes – it will be a lengthy process, but worth it!

Update on LEMS Study

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I went to Augusta, GA last week and met with the neurologist, Dr. Rivner, at the Augusta University Medical Center. He examined me and did an initial screening. I was approved for the study and sent for lab tests. I will have to come back within a few weeks to be administered the drug. Too bad they couldn’t have done everything in one visit.

There are two cons to the new drug. It doesn’t replace monthly infusions and it isn’t a cure for the disease. I am praying in faith that I can at least reduce the frequency of infusions in the future. Once I am administered the drug, I will take it for a full month, then head to Miami for the study.

The drug is called Amifampridine Phosphate, used to prevent weakness in LEMS patients. From my understanding, there will be an experimental and a control group in the Miami study. One group will be administered the actual drug, while the other group will be given a placebo. No one will know which one they will be given in the study.

Please continue to send your prayers. This is the closest thing to a miracle I’ve found in over six years. Hopefully, it will make me feel stronger and have more endurance. I give much thanks to my sister, Susan, and her husband, Donny, for taking me and giving me transportation to and from Augusta.

 

Update – LEMS Study

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I’m on the way Tuesday night to Augusta, Georgia at the medical center. I have a scheduled appointment on Wednesday morning at 9:00 a.m. It will take several hours to drive down. My sister and brother-in-law are going with me. I will be initially screened, along with lab work. The doctor doing the research study in Augusta will see me at this time. I’m praying that this is the answer to long-awaited prayers. Please keep your fingers crossed and a “God Bless” for a good result.

I will come back to Augusta after lab results are completed. I will be placed on the new drug then. From there, I wait a full month and then head for Miami for the study.

Update on LEMS Study

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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.

Newest Book Online

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Saga of the Ages - PublishedMy newest book, Saga of the Ages, is available online now. Please go to Amazon and Barnes & Noble websites for more information. This book is different from my other novels and totally exciting to read. Mystery, episonage, double spying, murder, romance and adventure are all entailed – it has something for everyone in mind. Centered around colonial times, Lisa Marie Chevalier plays the main character in this historical novel. Looks are deceiving. She looks like an angel on the outside, but a total devil on the inside. Read how her deepest demons come to life in the story. One of my best creations yet!

Newest Book Gone to Printers

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Saga of the Ages went to the printers today. It should be online in 10-15 days. Please keep checking Amazon and Barnes & Noble websites for release of book. Another book is created and born. It is literally a saga of the ages – a new birth.

Good News – All the Way Around

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I am going to Ohio State University Medical Facility for 1-2 days to be administered a new drug in the LEMS Study. A travel companion is being arranged by the pharmaceutical company. Also, the program director is contacting my Neurologist to get my medical records sent to Ohio. Afterwards, I will wait a month and travel to Miami. The clinical study takes up to two weeks. This is where I am with the clinical study. No dates are known at this time. As long as they are working on something, that gives me hope for the future. It has been a long medical journey.

On the lighter note, my newest book, Saga of the Ages, has been sent to the publishers last week. Covers have been approved. Just finished editing the final Galley proof. Hope to have that finalized this coming week. I sound like a broken record, but please check Amazon and Barnes & Noble websites within the next two weeks for publication.

We are expecting rain in Atlanta today. The temperature is right at 70 degrees, with an overcast. It is partly cloudy; however, thunderstorms are expected to hit later this afternoon. The sun is peeking in and out. Our yards were filled last week with fallen trees from the previous thunderstorm. The men cutting the trees hit a cable, knocking Internet out for three days. Gee, I actually survived three days without the television and phone line too.

Other than that, I hope everyone has a good weekend. Hug your spouse and children, as well as all of your loved ones. You never know how long one has on earth. Happy Father’s Day to all fathers, grandfathers and potential fathers!

 

 

 

Newest Book in Production Stage

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My newest book, Saga of the Ages, was sent to the publishers on Wednesday. It has passed the initial content evaluation assessment and now gone to creation. I want to have the original copy for final review by one week from now. If it’s not too much trouble, please keep you fingers crossed. I will keep you updated on progress.