Thankful for Blessings

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As I look back on 2017, for the first time in several years, I see accomplishment. Life has a way of unfolding nicely and smoothly for us. It isn’t always a smooth ride. There are twists and turns and bumps along the way. They can hinder our journey through life and block our path to well-being. How we react and cope with these “ups and downs” in life is part of the process. A negative attitude produces a negative effect, whereas a positive attitude produces a positive effect.

I found this year to have many good and unexpected events. My niece and her husband had their first child (a boy) this past July. My nephew and his wife moved out of state very recently to settle into their new home. Other family members have had some successes and accomplishments this year. There are some failures, of course, but they are few and far between.

On the lighter side, I have written my tenth book this fall. I just need motivation to publish it this busy season. In addition, I purchased a new van last month for my new power chair. It took me six months to a year to get approved for a chair. It taught me a valuable lesson – to be persistent. You are your best advocate.

This year has proven to be successful in finding new and alternative medical treatments. After six and a half years of continual infusions, I feel progress has been made. Last week, I started a trial study on an experimental oral drug. Today I was approved assistance for Rituxan, an intravenous treatment that will be given every three months to replace monthly infusions. It is used to treat chronic autoimmune disorders and certain blood cancers/disorders.

I stopped walking normally over seven years ago, after first being diagnosed with cervical spondylosis with spinal compression. I had myelopathy in my hands, particularly in my left hand. It now affects both hands. It was soon discovered the same year that I had breast cancer. Several months later, I was diagnosed with LEMS, an autoimmune disorder. It left weakness in limbs and joints globally and affected my mobility. I struggled for years trying to find a new method, a new treatment and a better quality of life.

While at Emory yesterday, my doctor ordered a new MRI of my brain. It has been seven years since my last one. My hands shake more and the tremors seem to be getting a little worse. The nerve tissue that was damaged seems to be permanent, yet I am hopeful it is not worsening. I still am optimistic and positive. Hopefully, the tests will show no brain lesions or further progression of the disease.

On that note, I am wishing everyone a wonderful holiday season. May this be a very Merry Christmas and a Happy New Year. Spend time with your family and significant others. Get out and enjoy this time of the year. You will soon discover that it is a beautiful world out there, just waiting for you.

 

Medical Study on LEMS

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I just got back from Augusta this afternoon. I started the new oral drug administration today. The doctor has started me on low dosages of Firdapse 10 mg tablets, increased in 45 minute increments. I am up to 45 mg. I am starting on 15 mg 3 times a day. However, because I am putting something new into my body, I am cutting pills into half to administer.

The research team will continue to monitor the drug, even from home. If it does what it is suppose to do, it will open up the calcium blockers surrounding the myelin sheaths. It works with the weakness of the disease itself. Hopefully, my energy level will continue to increase over time.

I feel privileged to be able to participate in this study. There were other health conditions involved. The drug has been FDA approved in Europe already. This study will help pave the way for FDA approval in the United States. It took several months of actually getting on the drug, but I feel fortunate, just the same.

I already feel a slight change in energy levels. I think this has been the answer to prayers for nearly seven years. God works in mysterious ways. If it can give me a better quality of life, than that is what I desire. If more, than I am definitely blessed. Who knows, I may be jogging around the block soon. Chuckle.

Anyway, thanks for all the prayers and encouragement. Please keep sending them. I wish everyone a wonderful holiday season and a Merry Christmas. May 2018 be the very best year yet in every way.

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.