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!

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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

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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.

Mom is Home Now

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

Yes, I’m happy to report that my mother came home from the hospital this afternoon. She seems to be doing okay, but very sore from surgery. I think she is feeling a little better. She doesn’t look as weak as when she went into the hospital last week. She is taking new medications and seems a little bit stronger than before.

Thank you guys for all your prayers, well-wishes, encouragement and support. They mean a lot and much appreciated. It is good to be blogging again and connected to others. Stay well and have a great weekend everyone. Please continue to pray that my mother’s blood clot will soon dissolve in her right atrium.

Update

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

Thank you for all the prayers and well-wishes. They are uplifting and it helps to stay connected to others. For those that have asked about my mother, she seems in good spirits. There have been tons of prayers for her, especially during her surgery on Thursday. Her heart surgery was nearly 4 hours long. From my understanding, it took a long time to find a vein beforehand. She has had a rough time, but she seems to be resting now.

Talking to her tonight, I was relieved that she was able to express how she felt. She sounds good, but she is experiencing dizziness. Hopefully, it is only due to her medications and she can come home from the hospital soon. Even at my age, I still need my mother alive and well. My mother has been one of my greatest motivators in writing books. The last thing she said to me tonight was, “I love you,” which I quickly replied, “I love you” too.

A Roller Coaster Ride

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Blogging, Inspirational, Networking, Reflection, Social Media

It has been an ‘up and down’ roller coaster ride today. My mother went into surgery just after noontime. She had a mild heart ablation with a new pacemaker implanted. That was decided on Tuesday due to her advanced age and weakened heart. She came out of surgery around 2:00 p.m. and has been in recovery this afternoon. Last word I heard is that she is in a regular room now, but still in pain from her surgery.

Thank you for your continuous prayers and well-wishes. Please keep the prayers coming. God is good and will see my mother through this. Now the healing process starts.

Going Through the Motions

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Blogging, Networking, Reflection

My mother is having heart surgery tomorrow. I’m not so much worried she won’t survive the surgery, as the healing process afterwards. I’m at a crossroad, not knowing what will happen tomorrow. I put my faith in God and confidence in the surgeon’s hands. I know with God’s help, He can get her through this ordeal. I have seen God work in mysterious ways. He changed me several years ago as I encountered health issues. That was a turning point in my life.

Talking to my mother over the phone this evening, I reassured her that all would be okay. Having my own fears, particularly with her advanced age and weakened heart, I tried not to show my concerns. I told her I love her, the one thing she does need to hear. It has to be difficult for her. I could sense her pain over the phone. In retrospect, I hope this surgery prolongs my mother’s life and she can live out the rest of her days happy and healthy. Thanks for all the prayers and please keep them coming.