Tonight as I lay here on the couch with chills and fever I felt impressed to share my story. A story known by only a few people but, today I realized is the day to finally share with everyone.
On July 4 of 1997 a storm blew through Brazoria Texas with high winds blowing down several large limbs in our yard. Of course, anyone who knows me, knows that I could not leave those limbs laying in the yard. So I got out and began picking up the limbs until the yard was completely cleared. Later that evening as I was getting ready for bed I noticed a large red raised area on my abdomen. So I thought I had been bitten by a mosquito. However the swollen area was much larger than a mosquito bite.
Fast forward to August Richard was asked to sing in a wedding in Rockport Texas. So we got a room and decided to make it a weekend get away for us. When he finished at the rehearsal We decided to go see a movie but it was too early yet. So, we went back to the room to lay down for a quick nap. It was 12 hours later that I finally woke up. Poor guy, he just thought it was exhausted and decided to allow me to sleep. The hotel that we stayed at had a really nice restaurant next to it and was within walking distance. So I got up, got dressed, and off we went to breakfast. By the time we were seated I was so exhausted I can hardly sit up straight. In fact, Richard went and got the car to pick me up at the front door of the restaurant because I was too exhausted to walk.
When we returned home I made an appointment with my primary care physician. I described for him all of the symptoms that I was experiencing aches, pains, fever, chills, and extreme exhaustion. After a brief visit I was in shock! My diagnosis was Depression…Really??? I had absolutely nothing to be depressed about! You see Richard had surrendered to full-time ministry, I would be doing agency nursing, and we were going to downsize our lifestyle and move on the seminary campus. we were elated…We were moving to the land of milk and honey!!! So how could I possibly be depressed?
A couple of weeks later I decided to go to my Gynecologist for second opinion thinking that possibly my hormones were out of whack. Unbelievable… she gave me the same diagnosis!!! DEPRESSION….
Did these physicians not realize I was not DEPRESSED! I was SICK!!!
Approximately a week later a physician was making rounds in ICU at Brazosport Memorial Hospital. He happened to catch me with a thermometer sticking out of my mouth. He asked “are you running fever”? I answered, “Yes but nobody believes me”. He said, “what is your temperature?”. I replied, “98.6”. He said, “what is your normal temperature?” I replied 97. He then responded with, “depressed people don’t run a fever come see me in my office”. He reached over and picked up the phone, dialed his office, and told his staff to work me onto the books so he could see me as soon as possible.
Within a couple of days I was seen by the doctor. He spent a lot of time with me asking questions and ordering test. As I was walking out the door, he said just for grins let’s run this one. It was a Lyme’s titer and he was checking for Lyme’s Disease…
Every day of my life, I thank God for a physician who would listen to me!!! I now knew what had caused all my symptoms…It was Lyme’s Disease and you see if the disease had gone undetected I could’ve easily died or worse been a vegetable… In fact, I already thought I was!!!
Immediately he referred me to an infectious disease doctor in Conroe, Texas. They inserted a peripherally inserted central line (PICC) into my arm for long-term antibiotic therapy. The antibiotics were to be to be administered every eight hours for eight weeks. So without fail I did not miss a dose! I wanted to get better!!!
My coworkers in ICU were absolute angels. In fact, they literally carried me through my shifts. They were right there next to me helping me by double checking my medication calculations and ensuring I was giving safe care to the patients because by now I was experiencing some cognitive deficits and brain fog.
It was at week six of my treatment everything began to go south quickly. I started developing grape size nodules all over my skull and body along with flu like symptoms and fever. I contacted my doctor and he told me just to keep taking the medication it probably was just the flu. If it wasn’t better by Monday make an appointment and come into his office and he would see me. By Monday I was even worse. In route to his office it was time for me to receive my antibiotic so I administered my infusion while driving to his office in Conroe. When I walk through the door he said “Oh my Gosh, you are allergic to the antibiotics. You must stop them right away.” So I did and immediately began to feel better he told me, “consider yourself healed”.
So I did just that. I went back to work full blast, I was in the process of organizing Ladies Night at First Baptist Church Brazoria, and packing my house getting ready to move to Fort Worth. I still had an occasional ache and pain, bouts of exhaustion, and even bouts of Brain fog but the doctor told me I could expect some of this so I didn’t wig out… That is until I couldn’t make a complete sentence and I was unable to retrieve words easily. Verbal communication became more and more difficult for me so, I decided to go and see the physician who diagnosed me with the limes disease.
I explained I had some bouts of muscle aches and pains, exhaustion and difficulty finding words in my vocabulary. Although I knew the words were there I couldn’t make them come out of my mouth!!! His Diagnoses were:
Then he proceeds to tell me “there is no cure”. I was shocked to discover I would have to live with this for the rest of my life!!!
To this day, I still struggle with fatigue, aches and pains, and the inability to get the word(s) that I want to say out of my mouth. So:
- When I am tired…I rest
- When I hurt…I meditate
- When I can’t get the words out…I type which is cognitive paired with tactile.
While many people never knew this about me…primarily because I refuse to be labeled…I thought it might help my family and friends understand:
- Why talking on the phone is difficult at times because I can’t get the right words out and just say what does come which may not even be relevant. So, I just don’t answer the phone.
- Why I spend so much time on social media such as Facebook…it is so much easier to communicate in written word.
- Why I don’t often accept lunch invitations…they often require more energy than I have to offer
- Why I try to separate myself from negative people…they just suck the life out of me.
- Why capturing memories in pictures is so important to me… A picture is worth 1000 words!!!
Because of my past experiences with antibiotics I am hesitant to take them. This weekend, I have fever, chills, congestion and a kidney infection and realize, my homeopathic approach is not working so I will be making an appointment with my physician tomorrow…I guess this weekend has reminded me of how I felt when I had Lyme’s.
I do not wear these challenges like a badge to draw attention to myself. In-fact, I would not be sharing now except…I have several friends battling illness and I want them to know they are not alone. When I see their posts written in despair, I pray for them but do not engage in conversation with them about their illness as ultimately it causes my focus to turn from health and the healing wings of my Heavenly Father to disease, illness and destruction. I also felt it was time to provide insight for friends and family so they could better understand why I am like I am.
I am favored & highly blessed & it is a privilege to call each of you my family, my friends, and my sisters and brothers in Christ. God has been so incredibly good to me!!!
That is soooo good of you to tell your story LeeAnn and make others aware of your situation so they can also pray for you and to lift you up as you have done for soooo many. Although I have not been diagnosed with CFS I believe that I must have but have labeled myself just lazy but do not have the strength to do much and I tire so easily. Before my back surgery, there were days when I just couldn’t get myself out of bed so I called in every so often for the lack of energy to put one foot in front of the other. Take care and rest, praying for good health. PS when doctors can’t explain something it’s always depression! Heaven forbid them saying that they just don’t know!
I have CFS and I totally understand how you don’t want to be labelled. I’ve struggled through high school, college, and uni keeping it to myself because I didn’t want it to define me.
As I’ve got older though I’ve managed it better and finally feel like I’m beating it and living a normal life, I think that never letting it define or label you helps in not giving up to it.
Have I told you lately how much I love you and adore you? I don’t think I have….so let me tell you tonight. LeeAnn…..I love and adore you. I did not know this about you and admire you so much for sharing your story with us. You’re right! It does lift those of us who are battling our own physical issues in our live to know…..we are not alone.
I also didn’t know Richard was in full time ministry. What a joy to hear this and find this out…..also I didn’t know this precious man could sing. How did I miss that all those years living in Angleton and my singing? We could have all gotten together around my piano and had some wonderful evenings.
I will remember you in my prayers my sweet and precious friend. I know God has plans and a purpose for you in all of this. God bless you…..please know I’m thinking of you and lifting you up in prayer as we speak.
Give my love to Richard and the family. I miss seeing you. Take care…..and please keep in touch! ❤
Thank you for sharing your message Lee. You are such an awesome woman and beautiful inside and out. I am Blessed to be able to consider you a friend. I will keep you in my daily prayers. Love you girl.