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.

 

Updates

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I have two updates. The first update is on the LEMS study. I got an email the other day from the program director. It looks like I will be going to Athens, GA for the study soon. I don’t know the date yet. It might take up to a couple of months to set up. I’m excited and anxious at the same time. I had infusions again on Tuesday and yesterday. They get very tiring after six years. Hopefully, this new drug will replace monthly (every 4 weeks) infusions one day.

The second update is on the books. I will discount newest book, Lingering Shadows, to $15.00 for Softcover and $23.00 for Hardcover (doesn’t include shipping charges). This is a bargain as the book is 406 pages thick and weighs 1.5 lbs. It contains beautiful sketches, drawings and illustrations of homes at the time of the Civil War Era. Please email me at annepm@comcast.net for ordering and payment information. You can also see my novels and poetry books at my new author website at http://www.annermurray.com

Life Has Its Ups and Downs

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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.