Tag Archives: Sweets Syndrome

Valley Fever Journey~ Chapter 5

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I was so sick. I had never been this ill in my entire life. (Feel free to read Chapters 1-4 of my journey for just how sick!) I was in the hospital for 11 days, waiting for a diagnosis of what was wrong with me.

One diagnosis came early, Sweets Syndrome, a “very rare inflammatory skin condition, or Acute Febrile Neurtophilic Dermatosis.” Say that three times real fast! That explained one set of rashes.

On October 18, 2020 I received the diagnosis that I was praying it wasn’t.  Valley Fever, or Coccidioidomycosis.  Apparently, I inhaled a fungus which causes “a disease especially in humans and domestic animals found in dry soils of the southwestern U.S., Mexico, and Central America. It can be asymptomatic or present as a mild to serious flu-like illness marked chiefly by fever, cough, sore throat, headache, fatigue, and pneumonia but sometimes becoming disseminated beyond the lungs especially to the skin, bones, joints, and meninges resulting in painful lesions, swollen joints, or meningitis.”

After the suggestion that I could have this, I prayed for any other result.  They ran several tests.  But if you know me, you know that I looked up all of them.  This one I did not want, others could go away…this one would not.

Thankfully, early diagnosis is a key.  Many of my friends that live in the Southwest(FB support group) have gone undiagnosed for years.  This resulted in dissemination, loss of lung, limb, meningitis and in some cases, death.

Fast forward….I am so much better.  I am now going to the ID doctor once every six months, so this month I will go back.  I have lesions, nodules and a cavity in my left lung as of six months ago, and my titer has been 1:2 for an entire year.  This reading indicates an active disease, but a good reading.  I am praying it is >1:2 this time around, which would indicate dormancy.

Those of you who have experienced “fatigue” know there is a marked difference in it and “being tired.”  That has improved as well.  I am walking 3-4 miles a day, which is a long way from using a walker for two months.

I still have joint and muscle pain, but it is tolerable.  I “eat to live” rather than “live to eat.”  Anyone that knows me well knows I stick to a pretty strict eating plan, and it has helped me.  I do listen to my body and if I overdo it…my Sweet’s Syndrome rash will break out and remind me it is okay to rest.

As I have said so many times..”everyone is dealing with something.” The pressure is on my friends.  But Jesus Christ has never left me, and He never will leave you. He told us in this world we would have troubles…but that He would bring us peace, and that we could take heart, He had overcome it all through His death on the cross. (John 16:33)

So what about my prayer?  Lord, anything but Valley Fever! He did not answer that prayer the way I wanted. I am not sure why, but I trust Him. He did answer my prayer in getting me through it.  Getting me through those tough days and nights when the pain was almost intolerable….bringing me peace when I was not sure what my future would hold.  Sending confirmations of His love through song, Bible verses and other people.

That is good news.  Remember you are never alone.  Once He is your Savior, He will walk with you through every one of those troubles, and friends…there will be troubles.  We live in a very fallen world.

None of us knows what tomorrow holds.  I know that I will always have to be mindful with my Valley Fever and whatever else this body has to endure. I know that it is okay.  No matter what, He will get me through it.

Jesus Christ is our only true Hope.

I am so grateful for those of you that prayed for me and took time to continue to check on me.  You were used to encourage us.

My prayer for you is that as you deal with the trials of this life, you will have the peace that only He can give. 

~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