by Svoboda M. Holt, M.S. LMHC, NCC
"I Have What!"
It all started with a simple flake on the back of my head. I remember it well. I was sitting on my couch when I reached up and came away with a tiny bit of dry skin. It resembled the flakes which had plagued our yellow lab, Darlene whom I had adopted from the pound months ago. My first thought was "that darn dog got me!". I had been treating her for a mystery illness for a number of months. It started with flakes on her coat and progressed to open, bleeding sores before it was effectively treated with a few applications medicated foot powder (after multiple visits to various vets and several expensive prescriptions). My ailment turned out to be a tad more complicated to diagnose and treat and nearly cost me my life. I was ultimately diagnosed with Pemphigus Vulgaris, a rare autoimmune disorder.
The year preceding my diagnosis was the busiest, most productive, fulfilling, and happiest time of my life. I was living the American dream and felt that I had it all. The year was 1998. I was working as a psychotherapist in a prison. I specialized in HIV/AIDS counseling challenging work that I loved. I had delivered many an HIV positive finding over the years and sat at more than one death bed. I knew first hand the life impact of serious illness and the struggle of painful death intimately. It did not prepare me for the beast, my name for P.V. It attacks every area of one's life like a savage beast which must be battled continuously and ferociously in order to keep it at bay.
My husband of fifteen years worked as a Classification Officer at the same prison. Our offices were across the hall from one another. We used our commute to and from work as private down time. We shared many friends and interests. Our marriage, though we had some rocky times in our early years was rock solid. We felt truly blessed and happy. We were raising three healthy, bright and beautiful children together; Stephen, then 13, Nicholas, 10 and our precious baby daughter Samantha 3. We had a lovely, well decorated, four bedroom ranch style house with the requisite swimming pool in an upscale neighborhood in a small suburban town near Orlando, Florida. Life was incredibly good.
We appreciated our blessings and strove to serve others. We taught compassion for others through example to our children. We were active in our church. I taught Sunday school and was involved in establishing a non profit prison ministry geared toward helping HIV positive inmates reenter society post release from prison. Tim, my husband, and his friend Dave were creating Christian comedy CD's. One of their skits was acted out by my Sunday school class that spring. Our lives were busy with the boy's sporting events and these activities. We were happy and content, blissfully unaware of the nightmare to come.
The one thing which marred 1998 was the passing of my dear mother in law in June. While we mourned her, we were comforted that she was pain free at last after a mufti decade battle with rheumatoid arthritis.
In August I started a doctoral program in counseling. I was a bit apprehensive about this undertaking due to the financial and time commitments involved. However, I was secure in Tim's love and support of me in actualizing this dream. I had always counted on his support to soar for the stars.
Thus, we were totally unprepared for the invasion of the beast. The flake I mentioned went away, but returned with friends. I finally made an appointment with our family physician in September. He listened to my symptoms and gave me an anti fungal shampoo prescription with the statement of "It's probably something you picked up at work. Come back if it doesn't clear up." I was totally unconcerned. I used the shampoo and resumed my life.
Unfortunately the flakes returned. I noticed that as I removed the flakes, this skin underneath would be pink. Then instead of healing, more flakes would appear and the area would grow larger. Of course, I ignored it until it became painful to wash and comb my hair. After the holidays that year, I made another doctor's appointment. This time the only available appointment was with a physician's assistant. He prescribed an antibiotic, a different shampoo and scheduled a biopsy stating "it's probably just something fungal."
Meanwhile, I was developing dime and then quarter sized open sores all over my head. I returned to the HMO Doctors repeatedly. Eventually I saw a nurse practitioner twice, the physician's assistant three times, and a rather cranky MD He actually got out the medical book and scornfully told me I had psoriasis pointing to the pictures with "it's nothing that could kill you!'. Needless, to say I felt rather foolish and perhaps that I was over reacting to the whole thing.
Finally, mostly to get rid of me, I was referred to a dermatologist. One of the multitudes of medical staff who treated me suggested I had lupus. I had a colleague at the time with this disease. I researched it and was frightened by the possibility of this illness. Little did I know that it would have been a gift!
Life went on. I celebrated my 36th birthday. My symptoms continued to worsen. I noticed that whenever my long hair touched my back, I had these red painful sores. I concluded that whatever mystery illness was in my scalp was spreading to my skin through my hair. I started wearing my hair up in a braid or twist to keep it off of my skin.
I continued to treat clients individually and through an HIV support and educational support group I facilitated. I added an anger management group to the program. I truly loved helping others come to grips with their illness. I tried to provide acceptance, encouragement, and love to a population which was feared and rejected by their peers especially in prison. I saw my work as rewarding and worthy of the effort. I barely acknowledged my symptoms as I went about my busy life. I had an appointment to see the dermatologist that June and I half expected him to scold me for wasting his time.
He turned out to be a highly caring and competent professional. He examined me and ordered a biopsy and blood test. Both were done in his office that day. He scheduled a follow up in two weeks when we would review the results. He mentioned lupus as a rule out but did not seem overly concerned. I was in agony at this point and the first glimpses of fear that this could be serious were starting to surface at the edges of awareness. Showering and wearing clothing was extremely painful.
Our family went beach camping that weekend. I remember walking the beach collecting sea shells with Sammie, feeding the pelicans, and fishing with the boys until midnight. It was our last idyllic trip as a family. I returned to work covered in what I thought was strange bug bites all over my arms and legs. I also noticed these painful blisters on my gums which I thought were cold sores. Little did I know that the beast was going wild.
My fear increased when I received a phone call from the dermatologist's office at work. The nurse informed me that the results from the tests were in and that the doctor wanted to see me that day. I knew something was drastically wrong at that point as it had taken two months to get the appointment to see him and suddenly, there was an opening that day and a week sooner than scheduled! Still, I made the appointment for as late in the day as possible so as not to interrupt group. The date was June 22.
As it happened, on that day I was planning to have dinner at my friend's mother's house. Thus, after work it was Melanie, rather than Tim who accompanied me to the doctor's office. As we waited in his immaculate examining room overlooking the pretty lake we chatted about every day things like the ministry, work, our plans for that evening. Neither of us seemed apprehensive. I was most concerned about being tardy for dinner.
The doctor came in looking rather serious, and after introductions stated "You've tested positive for Pemphigus Vulgaris. It is a rare disorder but there are treatments. I'll give you some literature and get you started on medication." I did not register at that time that Melanie, a nurse practitioner, turned white and tears sprung to her eyes. All I kept repeating was "But at least I don't have lupus, right?…I have what? What is that called again?" He kindly told me that the first few appointments were mostly counseling. I thought, "Counseling! You've got to be kidding! What do I need counseling for? I'm a therapist! For Pete's sake that's what I do!" These thoughts were reeling through my head as the nurse gave me information on the beast and various prescriptions.
I did not comprehend why Melanie kept asking me if I'm OK. I did not read the literature in the car as I get motion sickness if I try to read in a moving vehicle. Later we were busy with dinner at her mother's. She and a friend prayed for me afterward. It was only later that night as I lay in bed when I read words like 'fatality' and 'mortality' did the reality of the enormity of the diagnosis begin to sink in….I had forever left the world of the healthy and entered the nightmare existence of the beast battle! Over the next two years, I watched my marriage crumble, my work life end, and every relationship be tested to the limit (and some to the breaking point). I also experienced the most excruciating physical pain imaginable and had days when death seemed like a blessing. My idyllic world was over. I made incredibly foolish decisions. I experienced depression, anxiety, and anger more intense than I thought possible (side effects of the medications). The beast came to devour and devastate every aspect of my world…that was the beginning of the battle….
The next article will document the journey back to health, the battle over the "beast"…
As a therapist, I am well aware of the grief stages one goes though when faced with a life threatening illness yet only in hindsight can I document each stage I experienced. I went to work the day after my diagnosis, thus the denial kicked in instantly. I lasted until noon before giving up and going home. I shared the news with my supervisor and two collegues who were shocked of course.
I was determined that my life would not change, little did I realize that it already had forever. I was initially treated with 80 mg. of Prednisone and 150 mg of Imuran. As I read the side effects of prednisone my initial reaction was "Great, this stuff will make me look like Quasi Motto and act like a psych patient!". Little did I know how accurate this description would be!
My face immediately expanded and eventually my body as well despite daily workouts initially. Almost immediately I began experiencing depressive symptoms both from the medication and from the fact of dealing with a life threatening illness. I also had trouble with concentration, insomnia, lethargy, fatigue, and irritability. I vividly remember this feeling of wanting to jump out of my skin and strangle the nearest person who irritated me (and everything seemed to suddenly irritate me!). I somehow managed to function and keep it together at work but fell apart at home in front of my family. Ms. Super-efficient at everything could barely make it through the day. I crashed and burned five weeks post diagnosis and went out on medical leave.
Initially my friends and family rallied around me. There were offers of prepared meals, prayers, and many words of comfort, sympathy, and encouragement. I had a difficult time with this, as I resented being pitied. What was most helpful was the friends who were simply there and doing activities with me rather than trying to tell me how I should be feeling and behaving. The telling of the diagnosis became wearisome as did dealing with people's reactions. I often found myself comforting the other person rather than expressing my own true feelings.
We tried to resume our family life as before. In July we went camping in South Carolina as we had other years where my foster parents had retired. We even met friends there. Unfortunately, I ended up in the emergency room with severe bronchitis, probably due to a lowered immune system from the medications.
It was startling to be a ‘patient' rather than a clinician. The emergency room doctor almost sent me away suspecting a panic attack. Luckily, he had the sense to order a chest x-ray which supported my symptomalogy. We ended our vacation early. I was on aninhaler, antibiotics, narcotic pain medication as well as the immune suppressants.
Determined to maintain my professional identity, I returned to work five weeks later. The pemphigus symptoms had started to improve and I felt that I was starting to stabilize.
I also found the on line support group. For several months, all I could do was read the postings. I remember deleting anything describing severe symptoms thinking "This will never be me!" How wrong I was!
Almost immediately after diagnosis well meaning friends and acquaintances approached me with "cure alls". I actually purchased a $50 tub of powder called Ambrotose which was supposed to 'balance my immune system'. It did nothing and I discontinued it after a month.
I was not so fortunate with the Noni Juice Mel, the nurse practitioner, purchased for me and insisted I take in order to "balance my immune system and avoid taking all that toxic junk". It boosted my immune system in January of 2000 and triggered the most horrendous flare which nearly killed me! Prior to taking this vile tasting stuff, I had stabilized. Everything was healing and I was able to reduce the pred. to 20mg and was still taking the Imuran. Afterwards, nothing seemed to work. Once more I was on medical leave.
This time however, the beast refused to be tamed. The dermatologist increased my prednisone to 100 mg. and switched me to methotrexate. The symptoms worsened. Next we tried Neoral and the decline continued. I was fortunate to have a wonderful medical team locally who fought for me to get the best care possible. I was referred to Shands Hospital in Gainesville for an evaluation. The low point to date came in June when I tested positive for the antibodies to paraneoplastic pemphigus or super beast. I underwent all of the cancer tests, which mercifully were all negative. Dr. Knipe, my local dermatologist performed a second biopsy which ruled out P.P. I never thought that I would be thankful to ONLY have the beast!
I refused to return to Shands for further treatment when the specialist informed me that some patients just ‘have to live with blistering'. He was not very familiar with I.V.I.G. or plasmapheresis, treatments I had learned about from the discussion group and my own research. I don't believe that I would be alive today had I remained in his care.
The online discussion group helped me tremendously in my fight for life.
Through this venue I learned about Dr. Anhalt and his research at Johns Hopkins. After much haggling and arguing with the insurance company, I traveled to Baltimore for my first evaluation, and thus took the first step back to health. He reduced my prednisone to 60 mg. and restarted the Imuran but at a much higher dose, 350 mg. My flare immediately worsened. Two local I.V.I.G. treatments also proved ineffective. My symptoms improved slightly for a few days after each treatment but almost immediately worsened.
At this point I had huge areas on my back without skin as well as open bleeding sores on my scalp, stomach, and under my breasts. I was in constant agony. I also had to keep a chart of what medication to take when as I was on so many different kinds!
At home I was impossible to live with. I flew into rages over the slightest things. I could not sleep. I gave away money to a conman I imagined I was helping. My husband moved out of our bedroom that July. Our previously happy home became a battle ground. Somehow, I managed to attend school periodically. I cried recently when I read several papers from that time period. I could not concentrate. I was paranoid. I put on a happy face for the world but at home I completely fell apart. I had serious conflicts with our then fifteen- year old son and my husband. My world was spinning out of control.
I entered the hospital at Johns Hopkins at the beginning of October, 2000 and spent almost the rest of the month there. I had never been sicker.
My blood pressure dropped precariously after the second plasmapheresis treatment. I came to after spending forty minutes in a dark tunnel and feeling incredibly cold to two nurses trying to bring me back and surrounding me in heating packs. My mother traveled to Baltimore from Phoenix to be with me. We had become estranged during my ‘insane period' and we reconnected in the hospital.
I was not an easy patient. I refused to lie in bed. I hobbled to the smoking area several times a day and refused the hebrin shots in the belly. Victories were reduced to daily sponge baths, the ability to leave the hospital room, and maintain as much independence as possible. I refused to wear hospital clothes and wore my own pajamas and robes. This gave me a small semblance of control and normalcy in an incredibly dehumanizing and terrifying situation.
Still I continued to deteriorate. I was terrified when Dr. Anhalt would enter the room shaking his head and stating "I have never seen the cocktail not work with anyone. You are a stubborn one!" I knew this was a make it or break it time for me. My life was in the balance. They released me three weeks later as my body could not stand any more plasmapheresis. I was sicker than ever. On the return flight to Orlando I was one of the first to board the plane as I obtained a medical boarding pass from the airline. Nobody would sit next to me. I truly looked a fright with my swollen face and body, thin prednisone fried hair, open sores on my face and scalp. Finally, a woman sat next to me when it was her only option in order to board the plane. I felt like a total leper and outcast! Death did not seem like such a bad prospect!
I returned home determined to mend my marriage. We celebrated our seventeen year anniversary with a dinner out. Three days later I was served with divorce papers at my front door. Apparently my husband had filed for divorce as I lay in the hospital fighting for my life. My marriage was over. I moved out January of 2001. I was terrified to be sick, single for the first time in two decades and alone!
Miraculously, the healing started. At first it was gradual and snail paced but as the months went by the blisters stopped popping and healing became a reality. I was forced to return to work prematurely by my supervisor or risk losing my retirement. I somehow hung in there for four months, despite a hospitalization for pneumonia, and retired officially due to disability July 11, 2001.
Since then, I have continued to heal and regain my health. I completed the academic portion of my doctoral program with a 3.67 G.P.A. (Much lower than the 4.0 of the past but finishing at all seemed impossible at some points!) I also passed the comprehensive examination November, 2001. I am currently forming my dissertation committee and submitting an intent to submit a proposal. I hope to complete my Ph.D. in counseling by the middle of next year. Of course, my subject is the beast! It is my final victory in the beast battle. I have traveled from patient to researcher of the beast!
Slowly I am restoring and rebuilding every area of my life. Professionally, I am in the process of opening a private practice along with two other therapists. Personally, Tim and I are once more dating and trying to rebuild and repair our relationship. Though restoration is a slow and often painful process, progress in all areas is clearly evident. I have come such a long way from the pain wracked days in the hospital room overlooking a brick corridor of buildings and praying for life!