February CSS awareness post by Dawn Clift
In the fall of 1997, my family and I were transferred from East Texas to Northwest Ohio for my ex-husband’s work in the tire industry. I was 32 years old. I was healthy, happy and excited at the opportunity to spend a couple of years in a new and ‘exciting’ place. We made the move the last few days of August and school started right away for my children. Whitney was starting 1st grade and Robert was an 8th grader. Mostly I remember how cool and dry the air was there- as opposed to the hot sultry Texas summer we had just left behind. The folks in the area sounded very foreign to me with their nasal Midwest accents. The flat landscape quilted in corn, soybeans and wheat was a sight to behold for this girl who grew up in the piney woods of east Texas and southwest Arkansas.
Parents settling into new jobs, kids into new schools–things were rolling right along. Exploring on the weekends, looking for a house to buy, and looking forward to some Midwestern snow; we were adjusting to the changes well. Two months into the transfer and I got a nasty cold or flu that really shook me to the core. Shocking to me because I rarely ever got sick like that. A little Benadryl for some seasonal allergies was about all I ever had to deal with in the way of sinus issues. But with this ‘cold’ my sinus cavities were so swollen that I could not taste or smell a thing; could not get the thick mucous out of my head at all, my lungs were tight and wheezing and I was exhausted beyond belief. I also had an outbreak of psoriasis on my scalp, my arms and the side of my torso–never had psoriasis before this. Deep in my ear there was an unrelenting itch that was driving me mad.
After 4 weeks of undeniable hell, a work acquaintance offered up a physician that was actually ‘accepting’ new patients. In hindsight, this Dr.’s lack of knowledge in diagnosing me- yet allowing me to have a steroid shot every 3 to 4 months, knowing that was the only thing that kept me ‘healthy’- is probably what kept the prodromal stage of Churg-Strauss somewhat under control for about 15 years.
Dr. Fox was in his first year of practicing medicine when I showed up. He prescribed what most would when he examined me. Antibiotics, a steroid shot and a prednisone taper pack…behold, it was a miracle! I could breathe, smell, taste, and be a happy girl again! Itching stopped, energy came back and I was feeling grand!
A mere six months later I was back at the Dr’s office, pleading for help again. Another steroid shot and an asthma inhaler and I was back in business. I decided I must be ‘allergic’ to Findlay, Ohio–no, really, I had to be allergic to something in the area, right? Things were going way crazy for me, I was not used to being sickly.
The trips back to see Dr. Fox that first year or two were about every 4-6 months- I’d plead for a shot so that I could smell and taste food- I was told every time that the steroid shots were not ‘good’ for me long term. At the same time he would tell me not to wait so long to come and see him as my condition would deteriorate and the bronchitis would ensue: ‘you don’t want to end up in the hospital with pneumonia Little Texas”, he would say. Ultimately, I was never denied a steroid shot.
Fast forward to December 1999, our family was transferred to the United Kingdom for work. I got a nasty flu right before our flight to Europe and it zapped my sense of smell, taste and breathing. Sadly, I was never allowed to have a shot there–was told that they ‘don’t give steroid’ shots. They were a bit befuddled as well as to why I couldn’t smell/taste etc. Gladly gave me betnesol drops to put up my nose as I hung my head off the side of a bed–that was ridiculous–never worked. They happily gave me inhalers for asthma, singulair for allergies–all the while 3 years into this ‘sickness’ I still could not understand why I was being treated for asthma, I didn’t have asthma. Surely I would know that about myself for goodness sakes.
I’ll be honest, my quality of life was pretty horrible at times. Two years in Europe and I rarely tasted or smelled anything. Not even deep in the bowels of Cooper-Avon Tyre’s factory could I smell the acrid and pungent funk of the curing rubber. What an anomaly I had become. There was a time when my electric bed warmer caught on fire while I was relaxing and reading. My 9 year old daughter came into my bedroom and alerted me! I could not smell a thing. Could not check for spoilage when I poured milk for my children; smell for freshness in meats or fish. And saddest of all, I could not smell the lovely clean hair of my children after their baths. Life is so mundane without the luxury of smell. Even stinky things.
Eventually I paid for my own visits to a private clinic in Bath, England. They too were baffled. Perhaps sinus surgery would alleviate the problem? There were not any major issues inside my nasal passages- a small polyp is all that was seen. CT Scan showed that my sinus cavities were pretty much swollen shut. Hence the lack of smell. I was told time and again that I had not ‘lost’ my taste senses. They simply could not detect flavors because of the swollen sinus issues. I began to compensate for the loss of smell and taste by adding lots of what I could detect. Cayenne, salt, and sugar. Eventually my sadness over not tasting made me realize I had to eat only healthy things–tasting them or not, I had to nourish my body properly.
September 2001, back home in the USA. Findlay, Ohio, Dr. Fox: I’m back!! Please may I have a steroid shot!!?? Woo-hoo…food! Smells! yum!
Back to work at Cooper Tire USA…catching every cold that goes through the office. Despised by those around me when I am sick- ‘can’t say that I blame them’- but I don’t miss work. I had to be there. That’s just me.
By spring of 2003, I am experiencing unexplained weight loss. At a 104 pounds, Dr. Fox repeatedly tells me that I cannot afford to lose more weight. But, heck, I ate; I just didn’t sleep, or have any energy. I was having migraines and anxiety issues almost non-stop. I was clumsy in balancing myself. Even putting on a pair of pants could make me fall down. I truly thought it was just being 30 something and I was getting older. One weekend in April or May- with the cottonwood tree fluff in the air like a beautiful snow storm I got increasingly sicker; it was pneumonia. I spent a week in the hospital. Missed a week and a half of work.
By then I had been through allergy shots, sinus surgery and any sort prescription they thought might work along with the prednisone: Singulair, Claritin-D, Advair and things like Clobetasol for the flaring psoriasis.
My ex-husband said after my hospitalization that if I got sick again, we should probably just ‘put me down’. He was joking. But it was painful to hear. I was so tired of being sick. Clearly these things were real, but I was beginning to think I was a hypochondriac.
Maybe, because I had a lull in the disease for a few years before this past summer’s eosinophilic explosion; survived a painful and shocking divorce, and was blessed with the most wonderful love I could have ever hoped for… I forget the full nightmare that I experienced from 1997 to 2014–before being diagnosed.
This past summer I went on my first cruise–July 2014. A week in the fun and sun of the western Caribbean. Then, back to work in my brand new job for one whole day after that cruise and I found myself at the doctors office for severe and unbearable joint pain (had been acting up for a few months) and asthma issues to a degree that I had never seen. My Dr. couldn’t even hear me out on the joint pain–he jumped right to the chest x-ray. I guess hitting the albuterol 8 -10 times a day is not a good then when the lungs still won’t open up.
It took a week and a half for a team of doctors to determine that I had eosinophilic pneumonia. The terrible coincidence of me just coming off of a cruise in the tropics threw the doctors off big time. I had received 7 of the strongest antibiotics known to medicine and they didn’t touch this pneumonia. In fact, it has spread to both lungs and I was about to be moved to critical ICU. I resolved on day 3 of my hospital stay that I was not going to make it out alive. I told God I was ready if He was, but that if he could spare me, I’d like to be around longer for my children and my sweet fiance. We planned our engagement on that cruise. How could this be happening?
The Centers for Disease Control, a pulmonologist, my Primary Care Physician, and several others were baffled. The pulmonologist, scheduled a bronchoscopy and found the eosinophils in my lungs were off the charts! A cortisone drip was started and within 24 hours I was a new woman!
I was off work for 3 months as I recovered strength. I was also crazy as a loon from the diagnosis that came in August, a body full of prednisone and cellcept–felt like I had dimentia most of the time. Trying to keep up with the team of doctors I was seeing who were trying figure out how to treat me. That part is literally still going on–and I am still reeling with how to live my life in a healthy state.
On January 6th, a few weeks ago, I was at work alone in the quiet and feeling great. A co-worker came in–things seemed extra loud to me and the next thing I knew I was slurring words, feeling confused, falling over and banging my head on my desk. My fiance was called and I was taken to E.R. where I was admitted for a 3 day hospital stay. I do not remember much of that day at all until I woke up around 3 in the afternoon. Absolutely cleared from even the slightest doubt that I had a stroke- the baffled doctors just scratch their heads. As I am writing this, I am as dizzy as a drunkard on a merry-go-round. Loud noises make me feel as if I am falling. Lying down makes me spin out of control and I am so very tired of just being tired. I’m wearing foam earplugs almost 24/7. I’m scared for the first time really. Very scared…and I’m sad. I’m feeling beat.-down. I drive myself to work and worry constantly that a horn or siren will make me faint like that day in the office. If I got pulled over for a sobriety test, I’d surely fail; sans the alcohol.
I am being sent to a new ‘ologist’. This time it’s an otologist – neurotologist. The evaluation is for Vestibular Hyperacusis. My neurologist, who helps me with the “also newly diagnosed” peripheral neuropathy believes that the demyelination of my nerves in my extremities may be happening to the nerves in my inner ear.
Putting a name to what I have been dealing with for the past 17 years certainly made me feel a little less like I had imagined all of the bizarre issues. It seemed to justify the times that I moved with my job from one state to another; each time enlisting a new Dr. and trying to explain to them why I needed a steroid shot to stay ‘healthy’. Six months in to this Churg-Strauss (also known as EPGA and CSS) diagnosis and each new little diagnosis that pops up under the Churg-Strauss Syndrome ‘umbrella’, I don’t feel so relieved anymore at knowing what it is. I want it to go away. I want to turn back time and pretend that I could have done something differently to have prevented it choosing my body for its home.
Likely what has happened is that I have moved into a different phase of the disease. I had a lull for a few years where I was able to get a random steroid shot occasionally and things were low key and I as fairly healthy. In my mind I had just gotten over the ‘allergies’.
In reality, the vasculitic side of the disease and the autoimmune side have progressed quietly to cause damage slowly but steadily. The big attack in the summer must have done more damage in a hurry. Each ‘flare’ must do damage? I’m struggling with the neuropathy and the vasculitis damage the most. Raynaud’s is flaring liking crazy, the peripheral neuropathy is painful in my feet and my legs and this latest craziness makes me walk like a drunkard and feel sick to my stomach–noises are so loud and cause such scary anxiety; but mostly this newest issue has struck the fear of reality into me like a scary preview of what my life will be like in the future if we cannot get this disease under control.
We tell our stories in memory of Kevin and others who have gone before us with this disease. We also tell our stories to that we can spread the word to the rest of the world. The great team of Doctors that I have here in Atlanta, GA most certainly saved my life. But they are quick to tell me that they knew nothing of Churg-Strauss before I popped into their world and that they are unsure of all that can be done. It’s all trial and error right now as we try to get my immune system suppressed and this disease under control. Flaring and remitting is part of the game, sadly. For me, I must learn to deal with my emotions; my mental well being. I am sad most days – and that is not me. I want the old me back.
I am happy to have such support and love from my fiance, my daughter, his daughter and my siblings and my co-workers. I am thankful for my spiritual relationship with the Lord. He must certainly have some plan for me, and He has certainly taught me to not give up. So it is with shame that I admit I am scared and sad. I know I should have more faith. After all, tomorrow is another day–and while no one gets to live forever, we most certainly forget about that part when we are dealing with scary things in our lives. My hope is that I will live a long and happy life with my sweet fiance and our children, because with research and support, the medical world will surely figure this out!
EGPA (Churg-Strauss) is one of the rarest systemic vasculitis, with less than 2 people in a million population being diagnosed each year. The main disease features include late-onset asthma, blood eosinophilia and vasculitis manifestations such as skin nodules or purpura (skin rash of punctuated red lesions) and mononeuritis multiplex (causing numbness or tingling or sudden loss of strength in the hands or feet). Cardiac involvement is also frequent and important to diagnose because it can be potentially severe and life-threatening.
The cause of this disease is unknown. Most patient have asthma, often with an allergic component as well as nasal polyps. In few cases, exposure to some environmental inhaled allergens, vaccinations, desensitization or drugs (like leukotriene receptor antagonists used for treating asthma) have been incriminated as potential triggers or precipitating factors for EGPA (Churg Strauss) onset or flares.
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