Category Archives: Valley Fever/Sweets Syndrome Journey

Valley Fever and Sweets Syndrome are both very rare, yet I was diagnosed with both after a month in Arizona.

Valley Fever Journey Chapter 4

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Today is October 12.  One year ago I had to go to the ER.  I was the sickest I had been in my entire life. Fever, coughing, pneumonia, pain.  I had blisters and lesions literally from head to toe.  I think every doctor in the hospital came to see the lady with all the strange skin nodules. 

I laid in the hospital ER for eight hours while they tried to figure out what was wrong with me and get me admitted. The daytime hospitalist was afraid to admit me, and I was going to leave, “come what may.”  The ER doctor begged me to stay, as he wanted to try to get me admitted by the evening hospitalist, so that he could get me to a larger hospital in a metropolitan area two hours away.  

He was able to do so and I was able to get to there within two days. He dedication to getting me to the hospital made all the difference. They tested me for so many things, TB included and I was in isolation because of it.  The ambulance ride at 3am wasn’t something I had on my bucket list, but I put it on so I could check it off!

Fast forward a year later.  I got a hair trim today and went shopping alone.  As I listened to my Gaither Vocal Band CDs (what I listened to in the hospital for the 11 days at Barnes), looked at the beautiful blue sky, drove my own car with the windows down, walked on my own without that walker I used for two months… tears flowed down my cheeks.

Valley Fever is a disease that will alway be a part of my life. Simply by breathing in a small, microscopic fungal spore that became a parasite in my body. My ID doctor said I was “at the wrong place and the wrong time.” It happens in the Southwest region of the country more than we know.

 My CT scan from last week did not show any shrinkage in the lesions, nodules or cavities… but that also means there was no growth.  I still have blood work to do, and hopefully it will show the disease is dormant, but even if it doesn’t, I am better.  I am more myself.  I don’t have severe fatigue every single day.  I am walking 2-3 miles most days. 

I just spent the day thanking the sweet Lord for another year of life.  A life that is far from perfect, but a life He has given me.  It all seems surreal in a way.  If I talked to you in those 13 days, I may literally not remember it.  Evidently, that did happen quite often.  

But I thank you from the bottom of my heart for your care, your prayers, your calls and texts.  Many of you still check on me and that is precious, I know so many of you are dealing with your own trials in life, and I don’t take that lightly.

I am reminded of this story and that fiery furnace from Daniel 3:16-18

“Even if” the nodules, lesions and cavities in my lung don’t shrink or go away,  “Even if” Valley Fever stays with me the rest of my life, “Even if” I have days that I am hurting and am fatigued….

I will still love the Lord and worship Him with my whole being. He is my peace, my grace, my heart, my salvation and my life.

I pray He is yours.

Even if.

Be Encouraged Today~

Tammy

My Valley Fever and Sweet Syndrome Journey Chapter 3…My Hope

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Biblical definitions of Hope in the Hebrew and Greek=To trust in, wait for, look for or desire something or someone; or to expect something beneficial in the future. Anticipation and the absolute certainty of God’s promises, confident expectation.

I was in Arizona, visiting my one and only grandchild and her parents. About a week before I was to come home, I developed a dry cough and thought I was reacting to the dry air and fires. I became very fatigued and attributed it to my Fibromyalgia and overdoing it.

I was wrong.  

Fast forward to October. By October 1st I was very ill and had to go to the ER on October 13, upon the insistence of my husband and neighbor. I ended up being transferred to Barnes Jewish and spent eleven total days there. I was very ill, and they did a lot of testing; I was in isolation and it was a time that the Father showed Himself over and over.

They transferred me by ambulance one evening from my local hospital, arriving at Barnes at 3:30am.  Suffice it to say, I would not recommend a two-hour ambulance ride on a bucket list! I put it on so I could check it off!

I was very ill and alone. I was peaceful, and I knew the Father was with me. We arrived on the 14th floor and the charge nurse introduced me to my nurse for that night and the next night.  

Here is where the Father affirmed his presence, and that He was my hope.

“This is your nurse. His name is Alphonse.”

“No, that cannot be,” I muttered quietly.  

I am sure they thought I was one of “those” patients.

“Yes, ma’am, he will be your nurse.”

“But that is my husband’s name!!”

No one could believe it!  

Who has that name? We all know of Alphonse Capone. But other than the Capone fellow and my husband, I knew of no others.

This nurse, Alphonse from Kenya, was such a blessing to me. His name alone was a comfort since my husband was not allowed to be there. Peace came over me. He was a believer, and we prayed for one another through those nights. 

He had a burden that he had been carrying for years, and I prayed over him. Night was the worse for my pain, so he prayed for me.

All the nurses heard the story and each time they came in my room, “Shang ra La” as I called it, I told them it could be a place of rest. The Lord let me love on every one of them and encourage them in their profession.

“Alphonse” never got to meet my “Alphonse”. In fact, he was not on duty with me after that second night. I told him we were adopting him, after all he was 35 and just a year older than our eldest. He was married, with two precious girls.  

I told our sons that they had an older brother, who just happened to be named after their dad. How “coincidental” is that? I don’t believe in coincidence. It was a “God thing” and will always be.

The doctors continued to test me for all kinds of diseases through that first week. I was in isolation, but with the Father’s continued presence, hope and support… we finally got some answers.

The Father will always be with you in your journey, no matter what it is. He is who I always knew He was. The journey may not be easy, but He will never leave you alone.

My Valley Fever and Sweets Syndrome Journey /Chapter 2

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**NOTICE**Some photos of rash are included**

After I wrote my first post I realized something.  I had not known what Valley Fever was, in fact, I had never heard of it.  Sweets Syndrome had the same effect…I knew nothing.

In fact, no one in the local hospital was aware of either one of them.  I decided that it might be wise to explain what each disease/syndrome actually was and how it manifests itself.

Sweets Syndrome a rare skin condition. Its main signs include fever and painful skin lesions that appear mostly on your arms, neck, head and trunk.

The exact cause of Sweet’s syndrome isn’t known. In some people, it’s triggered by an infection, illness or certain medications. Sweet’s syndrome can also occur with some types of cancer.

The most common treatment for Sweet’s syndrome is corticosteroid pills, such as prednisone. Signs and symptoms often disappear just a few days after treatment begins, but recurrence is common. from mayoclinic.org

Valley fever is a fungal infection caused by coccidioides (kok-sid-e-OY-deze) organisms. It can cause signs and symptoms such as a fever, cough and tiredness.

Two coccidioides fungi species cause valley fever. These fungi are commonly found in soil in specific regions. The fungi’s spores can be stirred into the air by anything that disrupts the soil, such as farming, construction and wind.

People can then breathe the fungi into their lungs. The fungi can cause valley fever, also known as acute coccidioidomycosis (kok-sid-e-oy-doh-my-KOH-sis). Mild cases of valley fever usually resolve on their own. In more-severe cases, doctors treat the infection with antifungal medications. from mayoclinic.org

Valley Fever has symptoms that are similar to COVID-19.  I was tested a few times for COVID-19 as they continued to try to find out what was wrong with me.  It also can be similar to TB, which I was tested for as well. X-Rays proved that I did have pneumonia in my left lung, that is normally the first organ the fungus makes itself at home in.

A punch biopsy proved that part of my rash was Sweet’s.  Although extremely rare, sometimes Sweet’s shows up with Valley Fever.  I have been told by my Infectious Disease doctors and Dermatology team that this was my body’s way of fighting the cocci fungus.

The beginning….much of it has faded now. The legs were the last to show signs of the disease and are still very dark patches, but the swelling is much better.

The fungus stays in your body forever, and the anti fungal medicine is used for months, sometimes years, to allow it to become dormant of sorts.  It can disseminate, but usually will do so in the first 2-3 weeks of infection. https://rarediseases.info.nih.gov/diseases/9525/coccidioidomycosisValley Fever is called an “orphan disease”.  There is not a lot of money put into the research or prevention of it. Sweets Syndrome is considered a rare disease. https://rarediseases.org/rare-diseases/sweet-syndrome/

I am learning a lot, http://www.valleyfeversurvivor.com has been a wonderful source for information. I highly recommend this site to learn about Valley Fever. Since my Sweets most likely came from the VF invasion, I have not studied it very much.

The one thing I have not had to learn is the faithfulness of God.  It has been a rough year for everyone in some manner.  When I was at my lowest, when I was not sure if I could get through the pain and uncertainty, the Lord never left me.  I knew that whatever the outcome, it would be okay.  No matter.  

He was who He always has proven to be…my rock, my strength, my peace and my salvation.

May you be encouraged today….in whatever you face!

Tammy