An Anniversary…

Not many people know that this is a big day for me. Not many people know that one year ago today I got some news that would change my life as I knew it. I got a phone call one year ago in the evening from my doctor, my heart started racing. He received my biopsy results. The news was what he expected, the news was not what he wanted to deliver – nor what I wanted to hear.

A few of weeks after I gave birth to my daughter I scratched what I thought was a bug bite on my stomach. The wound from the “bite” did not heal. Being a Mom of a brand new baby and a 2 year old, taking care of myself was not high on the priority list. I kind of just blew it off and kept going. Then I noticed my head started itching and I seemed to have a sore on my right temple under my hair. That made me stop and think. Little did I know that this was just the start of a VERY long road. A few spots appeared on my back and I knew I needed to get it checked out because nothing would heal. The wounds would start like a blister, then end up looking like a rash.

I went to one dermatologist, I saw the assistant – she tested for ringworm. It was negative and she gave me some cream and said come back in a month. I did not go back. We found another place that looked promising. Lots of smiles and positive attitudes, but little knowledge and no progress. I went there for 7 months. After biopsies, a patch test, creams, medicines, sprays, and at the end of it all they had no idea what was going on – we went on the search for yet another dermatologist. With lots of prayer we walked in to meet the new guy. PRAISE GOD for a man with experience and answers. All he did was look at me and he guessed the problem. “Let’s do a biopsy to make 100% sure.” I looked at my husband…I am not the best with needles and the like. I thank God for a man who can stand in the gap for my weakness. Biopsy accomplished, now to wait on the results.

“Pemphigus Foliaceus” : “It is an autoimmune skin disorder characterized by the loss of intercellular adhesion of keratinocytes in the upper parts of the epidermis (acantholysis), resulting in the formation of superficial blisters.” (Medscape Reference)

After a doctor tells you words like, “no cure,” “long journey ahead,” and “no more children (because of medication),” it is really hard to make sense of the rest. It is hard to think back through the past couple of years. They have not been easy. It took a year to figure out what was wrong, and it has been a year of trying to control this awful disease with some pretty BITTERsweet medicine.

Pemphigus does not have a cure, but it can be controlled and even sometimes go into remission. It is a pretty rare disease, so not many large case studies have been done. Thankfully my doctor and those at his practice had seen a case or two of people with this disease…and he has been practicing since I was born, if that tells you anything. I am also thankful that I live in this time period, because not too long ago there was no treatment for this condition – which can be fatal if left untreated. The medicine that I had to start on, because for some reason it is the only thing known, at this point, to stop the blistering onslaught, was Prednisone. A pretty heavy dose. If anyone has been on this medicine for a length of time, they know it is some nasty stuff.

The blistering had become so bad that the entire upper part of my back was covered. There were lots of spots on my lower back as well. They also speckled my legs, arms, butt (sorry, T.M.I.), neck, face, and had recently started affecting the skin around my eyes. The disease so terrible on my head that I could not even feel my scalp in most places. It was horrible…truly. Especially not knowing what it was for so long. I can’t tell you how many times I got out of the shower crying because of how painful it was for the water to beat the open wounds of my back, or how much I feared getting an itch – knowing that it was probably another blister forming.

Finally having an answer, even though it was not pleasant, meant at least relief from the disease was coming, but WOW, the side effects from the medicine was almost worse. I started at 60 mg. Just a couple weeks into taking it, POW, side effects started coming. From what we had read about the medicine, people didn’t start seeing major side effects for a while…not me. I could go on and on about the destruction of my body. It started with a red neck and chest, then swollen face, then swollen and distorted body, then the negative changes in my potassium, blood sugars, blood fats, white blood cell count and whatever else was in the vial after vial of blood tests they were running. Then all topped off with the muscle weakness, anxiousness, losing my hair, acne, non-sleeping, hungry, embarrassed self  – I was a pure, frustrated mess. The muscle weakness can be very serious (not to mention that I was on the verge of diabetes towards the end), it caused my doctor to begin dropping my Prednisone dose sooner than he would have liked. About a month after I started on the Prednisone he started me on Cellcept as well, which can take 2 – 12 months to start taking total effect. This is a medicine they give to organ transplant patients, and has much less severe long-term side effects than the Prednisone. It has been tedious trying to adjust the Prednisone and watching to see if the Cellcept could take over. All in all, I feel very blessed for the progress my body has made.

A year after starting on that high dose of Prednisone, I am now down to 2 mg, soon to be 1….soon to be NONE! My body both loved and hated that medicine. It needed it to kick start the control process, but then desperately needed to get off of it to regain healing of everything else. It has been a very long, emotional, physical and mental journey. I am beyond BLESSED to say that I see the Light at the end of this confusing tunnel called Pemphigus. I only have a couple small spots on my back now and one on the side of my face and they are all just taking their time getting smaller, and prayerfully will just go away in the coming weeks. After the rashes went away, I was covered in scars, they are disappearing now as well. I am dealing with the mental and emotional scars, by God’s grace. The rest of the effects of Prednisone are melting away as well. My internal and external self are coming back around. This whole experience has and is the most difficult thing I have ever gone through.

You may wonder why I decided to write a small novel on this topic, instead of keep it private. I just wanted this note to be available for someone to stumble upon, just as my husband and I searched for clues or answers to our many questions about what could be wrong and found others in my same boat. There was comfort in knowing I was not alone. I wanted to be able to give someone a little hope in the midst of struggle. As we went 7 months wondering why a group of doctors could give us no help, we tried to research ourselves. If you feel like you aren’t getting the service or answers you need, find another doctor…please don’t wait 7 months like I did. Besides a good doctor, faith in God has truly has gotten me this far. Faith that even though I do not understand what is happening and why, that He does, and He loves me and is taking care of me, even though it is hard to see through the fog. I have clung to Jesus at the end of my rope…He is carrying me through. Though I may never know why I have contracted this disease, I do know that it is making me stronger. Though I have felt overcome, God has and will make me a victor.

“But thanks be to God! He gives us the victory through our Lord Jesus Christ.” 1 Corinthians 15:57

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6 Comments

  1. Thank you for being brave enough to share that. You have been on quite a journey. What a miracle to find out what you were dealing with so that you could receive proper treatment. I hope the best days are ahead of you.

    Reply
  2. Alisha

     /  March 4, 2013

    Tracey, I know you shared this with me while we’ve caught up through messages but I just want you to know I truly was touched to read the details in this post. Sometimes it’s therapeutic to type it all out and you never know who may need these words of strength, encouragement, and a story of hope. I love you friend! You are a brave woman.

    Reply
    • Thanks Alisha! That means a lot. It has been a definite rough patch of life, thankfully my body has returned to “normal” with just a few more spots to go! The Prednisone is gone, thank God, and I am back to myself. 🙂

      Reply
    • Thanks Alisha! That means a lot 🙂

      Reply
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