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.
My neurologist wrote me through the Emory patient portal tonight. I contacted his office yesterday. I do not have Charcot Marie Tooth Disease. I can believe my neurologist I’ve seen for 9 years other than an orthopedic surgeon I’ve seen only twice in my life. Dr. Esper said the disease is a completely and totally different thing. I’m glad to be reassured and Dr. Esper has always answered my questions.
It is good to ask and be sure. That is a big relief. I’m still considering DNA testing for the rare autoimmune condition. I’ve wasted so much time before in other areas. I believe my concentration should be on finishing this newest book and also sending Saga of the Ages away to a script writer. I want the book to be looked at as a potential movie script one day. I told my physical therapist of my dream today. She said why not. Even if I don’t succeed this time, I can try again in the future. What do I have to lose?
On the lighter side, information you might also be interested in. If someone is contacting you through social media and you don’t feel comfortable, you can do something about it. You don’t have to tolerate it or take it. Ignoring it sometimes doesn’t solve the problem either. If you tell this person you wish not to be contacted and they persist, there are steps to take. I contacted an attorney yesterday about rights.
Someone can give an opinion on your social media (blog, twitter, facebook, etc). It is going beyond that to actual defamation of character that warrants action. I did what the attorney told me. Hopefully, I won’t hear back. I’m not impressed with persistence, especially if that person doesn’t get it the first time. In other words, it can also be classified as harassment if it persists.
Fighting off travel on an Atlanta highway, a couple was anxious to get to the hospital. It was mid-afternoon and soon the Atlanta people would be getting off work. Traffic would be worse. Earlier that day, there was a call that a young woman had gone into labor. Heavy into labor by the time the couple had arrived at the hospital, the young woman was attended by her mother, standing by her bedside. In addition, the brother of the young woman in labor had also come into the room. Where was the biological father?
The anxious couple entered the hospital room. The baby still had awhile to be born. After a couple of hours, we were told it was time. Time for the delivery and time for the young woman to push. The gentleman wanted to go call others, while the lady waited in the room.
That couple was my husband Tony and me. We had been trying to conceive a child for over ten years, actually twelve years. Several sperm artificial insemination and fertility procedures led to our decision to adopt a child. Within 20 minutes, the doctor was in the room. The baby’s head was crowning and boy, did he have hair.
It must have been a strong push and the baby was out. I counted his fingers. Yes, he had 10 fingers. I counted his toes. Yes, he had all 10 of them. He was perfect and perfectly made. I cried out to God and gave thanks after a successful delivery without complications. But mostly, I gave thanks that God gave me and my husband a beautiful child. The first time I held him, I cried. I didn’t want to let him go. I held him for ten whole days. We called him John. He was beautiful – blonde hair, blue eyes and fair skin.
We got to keep the baby until the tenth day. The very last day the birth mother could come back to reclaim her child. It was torture giving back a child you nurtured for ten days. It ripped me and my husband’s hearts out. We did not try to adopt again. It was too painful an ordeal. There are happy endings for some couples and families. We were not one of those people. John
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.
I feel this is an appropriate title for this post. I keep hearing “Where are the Clouds?” in my head. All I can come up with is “Don’t bother, they are here.” But actually, I am feeling much better than last week. Besides IVG Gammagard infusions, I had a viral stomach bug last week. My mother came down with nausea and dizziness today. The medication seems to be helping her.
My weight has dramatically dropped since last week, I weight 112 lbs. now in shoes and clothes. The head nurse of the home infusions services said I would get pre-meds next time to reduce the after effects of infusions. My question is why wouldn’t that had been done this time?
I have silent challenges and unspoken prayers. In fact, I would rather you no longer “say” that you will pray for me. I want to see action instead. I’m mad, which is good for me. I work best when I’m mad or enlightened about something. I’m right at that point of seeking life-changing answers.
This all started when I saw another orthopedic surgeon at St. Joseph’s Medical Center about two weeks ago. A long story short, there seemed to be some indication that this condition (even my neuro-muscular structure) was genetic. It was not verified or confirmed, but mentioned,
The reason why this is so important to me is because I would like some DNA testing to be done. I did speak to another doctor (OB/GYN) today about it. I can have medicare pay for it, due to the rarity of my medical condition. I need to do some research before seeking DNA testing. What would it entail? Blood tests or DNA strands tested. My sisters asked me that today, but I have no medical knowledge or awareness yet.
On the subject of DNA testing, I did speak to my parents today about it. I am their child and they should be consulted about it. My mother seemed more agreeable than I originally thought she would be. She said she didn’t feel guilt, although I never put blame on my parents for anything. I want to know if my medical condition of a rare autoimmune disorder is heredity through a recessive gene or is it structured in my DNA as a carrier?
I don’t want my relatives, especially my sisters, mad at me or the family embarrassed in anytway. It is not to offend or hurt anyone. It is within my God-given rights and I have that right to know. If you can’t acccept this, don’t read this blog. But please don’t preach to me or tell me that I’m hurting my parents.
As far as God, He has always been here. He is just been talking strongly to me recently. These are things that I should have done years ago. I just wasn’t as pushed as I am not.
Sometimes I feel defeated in this old world. My body is tired and fatigued, my joints are painful and I feel I’m getting sicker and weaker, not better. Moreso, I have a bruised heart, a fragile state of being. I feel alone sometimes, without the hope of my own family and spouse. Being divorced and childless is not all cracked up to what it implies. It means more independence, but it also can be full of lonliness and solitude.
I have found in my older adult years, that life can still be difficult. I’m blessed to be alive; I get it. However, I would rather be healthy and have a better quality of life. My last nine years have been full of ups and downs, like many of us. Yet, my journey in life has produced a sad outcome for me. Does the physical pain and suffering ever go away? I ask God when is He going to heal me. Sometimes I get an answer, sometimes not.
Doctors seem reluctant to perform surgery due to my autoimmune condition. I’ve seen several doctors in the past that tell me I’m a complicated case. I would be a high-risk candidate for surgery or the surgery might fail to work. I saw an orthopedic specialist at Emory last week about my feet and ankles. The surgeon told me he could do surgery, but not without risks. It gave me some hope, at least. I have an appointment with another orthopedic surgeon at St. Joseph’s Hospital in two weeks. I wanted to get a second opinion before considering any surgery. My fears are that the surgery will not change anything and my feet will invert back due to the neuro-muscular issues.
My neurologist at Emory is adding more treatments this month. That is what the Augusta neurologist in my medical study advised six months ago. I’m hoping and praying it will improve my quality of life, as well as my overall health. So, I will continue to pray for my healing and a miracle, but I haven’t seen too many miracles lately. I’m not being pessimistic, just realistic at this point. I do pray that I can sort this all out in my head and make a final decision. Five years ago, I came to the conclusion to not have surgery on my feet. I wanted more time to think about it. Now it is almost inevitable as big calluses are painful on both feet due to pressure, especially on my left foot.
Please pray that I make the right decision and let God select the right surgeon, if that is the case. My health and maybe even my life hangs in the balance. A frightening, but a legitmate concern of mine. A time to reflect back on good times and memories of the past. I feel very blessed to have support of friends and family. I feel grateful to have this blog to express my feelings and emotions; to reflect on my writings.
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.
Yesterday, I met one of my New Year’s resolutions. I lost down to 120 lbs. I reached my target goal one week before the new year. Although barely 5’2″, I hope to keep the weight off.
Things I have been thankful for in 2018:
- participating in a research medical study of LEMS (sutoimmune).
- finding alternate treatments (botox) for feet and ankles to enhance mobility.
- changing infusions to a new medicine. There were pros and cons to this.
- enjoying writing and another book written last spring.
- having financial needs met.
- a new van to drive.
- a loving and wonderful family.
These are not necessarily in order, but goals I want to achieve in 2019. Some are more important than others. They are:
- a closer relationship with God. Make peace with Him.
- my father regain strength and health, as before his stroke. Complete healing for his heart. May he be able to come home soon.
- my mother stay strong and active. Complete healing for her hand, b/p and heart.
- healing for brother-in-law and all removal of abnormal (potential pre-cancer) cells above his eye.
- complete restoration of personal health (including ribs and bladder) and regained strength. Straightened feet and ankles, so I can walk again. A cure for the autoimmune condition (LEMS) and no return of cancer anywhere in my body.
- keep weight loss permanent. I feel good at this weight (120).
- find a mate (spouse) for life. An equal partner to share the rest of my life with happiness, love and joy.
- that my sisters’ families stay healthy, happy and loved.
- welcome a new great-niece to the family this summer. May she be beautiful and healthy. Let her know she is loved.
- make financial needs stable and available if needed.
- new housing that best suits my physical needs. My parents also need new housing.
- more written books with 100% royalists and selling well. A play script for a series, Saga of the Ages. My desire to make this into a movie production one day.
Maybe I ask and hope for too much. But I mainly want good health and happiness for family members and myself. God bless everyone and stay strong and positive. Wishing everyone best wishes for the new year!