The Beginning of My Calling -Though My Ears Were Deaf

I think the day the symptoms started was when Freeport got its first clobbering of snow for the beginning of the season in 2007. I attempted to scrape off the icy, hard snow off my black 2001 Honda Civic DX and found myself so out of breath that I just stood slumped over the hood of my car, scraper in hand, car running, breathing heavy as if I had just run a marathon. I could barely make out the outline of the curb.

My doctor then had diagnosed me with pneumonia and added that my asthma was "out of control." After being prescribed seven days of Levaqin (a very strong antibiotic), inhaled steroids, 10 days of prednisone, and a nebulizer every 4 hours, I was still struggling to breathe. Three days after Christmas, I walked into the Emergency Department at Parkview Hospital in Brunswick because my breathing was more labored and I was now running a fever, even while on all the antibiotics. I was struggling to utter a sentence while taking three breaths to say it.

They decided to x-ray my chest and found nothing. The doctor asked me if I'd been out of the country recently - I found this question odd, but shook my head no. Without doing any blood work, he gave a nebulizer treatment, instructed me to buy an over the counter cough medicine and sent me home. The bill before insurance was over $1,000 for that, beside the x-ray.

I kept trying to go to work, exhausted from not being able to take a full in-breath. My ever-so compassionate boss made it clear that my dry cough was annoying her, and on one occasion, sent me home. I kept running a fever nevertheless, and painful, flu-like body aches continued, especially under my arms, neck and groin areas.

After seeing an asthma specialist, doing a pulmonary test and taking all the prescriptions he recommended, I still had the dry cough and extreme shortness of breath. Only now, it started to hurt when I inhaled. The area in my back by my left shoulder blade would seem stabbed by a blade if I yawned or took a full inhale. The asthma specialist had no answers for that. In addition, he could not answer why this whole time I was not wheezing. I have had asthma my whole life and never continued such symptoms after now two courses of prednisone and nebulizer treatments. I knew this was not asthma we were dealing with.

At this point, I experienced cold sweats and slight fevers still. That weekend, my underarms ached so bad that I put my hand under my left underarm. To my surprise was a swelling mass so large it was the size of a baseball! I checked my other underarm and it was almost the same size. There was residual swelling as well out to around my breast area. I was at my parents' house that weekend, and I immediately showed my mother. She could see the swelling herself and urged me to make another appointment with my now new primary care doctor.

When my new doctor examined me, she gasped and did not seem to hold any immediate reaction back. She referred me to an Infectious Disease Specialist immediately, which scared the bejesus out of me.

Meantime, the pain in my underarms increased and I could no longer wear bras, or any shirts that were snug, for that matter. It was increasingly uncomfortable to put my arms down as well. I had to sleep with pillows under them. The pain tended to travel down my arms to my elbow; sometimes with strong aches, sometimes with shooting pains that stopped me from doing whatever I was doing at that moment. I also noticed that both my neck and face began to swell and were painful to the touch, even when leaning on a pillow. My groin area and the back of my knees and my ankles were inflamed as well, and it was uncomfortable to wear jeans or anything snug. Needless to say, I was not getting much sleep because of the pain and it was a struggle to make it through the workday. I was also experiencing pink rashes across my face and on my chest. It now hurt when people tried to hug me or hold my hand. On January 24th, the doctor's office urged me to go to the ER again, as the pain had increased dramatically over a 24-hour period and the vicodin was doing nothing.

My mother went with me and after five hours, blood and urine tests, two bags of fluids and a morphine drip, they found nothing unusual. They even did an ELISA Lyme Disease test as well as a mono spot, checked my liver and kidney function, as well as cathaterize my nose to find possible traces of the flu virus. Nothing.

When I met the Infectious Disease Specialist, what seemed to be an eternity of a week later, he did a full examination and ordered more blood work and a CT scan. After the exam he said, "You know, I don't want to scare you, but you have all the symptoms of Non-Hodgkin's lymphoma or HIV."

I replied flatly, "I know." I had done so much of my own research before my appointment that day. It could have been possible for me to have HIV, but it wasn't like I had huge amount of partners in my life, either. Something didn't fit. Also, the odds that I had cancer were off too, because in most cases, lymphoma is painless, and I was in pain 24/7 and the pain and swelling were getting worse by the day.

Even after reasoning with myself, I was horrified to see that the hospital took 11 vials of blood, and some were being sent to the Mayo Clinic to rule out: lymphoma, HIV, Epstein Barr virus, cat scratch fever, tuberculosis, syphilis and a few other radical diseases. A week later, with a follow-up appointment, I discovered everything was inconclusive. Even the CT scan of my chest, abdomen and groin showed nothing abnormal. Because my step-brother was just diagnosed with sarcoidosis, they were looking for granules in the lungs, but they found nothing.

The IDS (Infectious Disease Specialist) stated that because everything was inconclusive, he could not order a biopsy of one of my lymph nodes, which would have been his next step. Upon looking at the lymph in the CT scan, the actual nodes were not inflamed, so it would be up to the next referring specialist to order the appropriate tests. When palpating the lymph nodes that are most swollen (like the one in my left underarm), the actual node was not inflamed, but the tissue surrounding it was. Otherwise, my white blood cell count was fine. I did not have lymphoma. I did not have HIV either. This, of course, was good news, but it didn't alleviate my pain, swelling or my shortness of breath. I just wanted to know what was going on with my body!

The IDS wanted to refer me to a rheumatologist, particularly a group in Portland. Because there was nothing "foreign" inside my body, his suspicion was that my body was attacking itself. These diseases are called "autoimmune diseases." He brought up the names of Systemic Lupus Erythematosus, Rheumatoid Arthritis or possibly Fibromyalgia, which occurs in 4% of the population.

It would all make sense, since I had always had a suppressed immune system and seemed to be the first one to come down with something.

Here are the definitions and symptoms of the 3 diseases, which all ring some bells for what I have been experiencing:

Common SLE (Systemic Lupus Erythematosus) Symptoms:
• Achy joints (arthralgia)
• Fever over 100 degrees F
• Swollen and painful joints (arthritis)
• Prolonged fatigue
• Skin rashes
• Anemia
• Swollen ankles (kidney involvement)
• Chest pain upon deep breathing (pleurisy)
• Butterfly-shaped rash across cheeks and nose
• Sensitivity to sun (photosensitivity)
• Unusual hair loss
• Abnormal blood clotting problems
• Pale or purple fingers from cold or stress (Raynaud's Phenomenon)
• Seizures
• Mouth ulcers (often painless, at roof of mouth)

Systemic lupus erythematosus (SLE or lupus) is a chronic autoimmune disease that can be fatal, though with recent medical advances, fatalities are becoming increasingly rare. As with other autoimmune diseases, the immune system attacks the body's cells and tissue, resulting in inflammation and tissue damage. SLE can affect any part of the body, but most often harms the heart, joints, skin, lungs, blood vessels, liver, kidneys and nervous system. The course of the disease is unpredictable, with periods of illness (called flares) alternating with remission. Lupus is treatable symptomatically, mainly with corticosteroids and immunosuppressants, though there is currently no cure. However, many people with Lupus lead long and substantial lives.

In the 1950s, most patients diagnosed with SLE lived fewer than five years. Advances in diagnosis and treatment have improved survival to the point where over 90% of patients now survive for more than ten years and many can live relatively asymptomatically. The most common cause of death is infection due to immunosuppression as a result of medications used to manage the disease (anti-cancer meds or steroids).

Rheumatoid arthritis (RA) is traditionally considered a chronic, inflammatory autoimmune disorder that causes the immune system to attack the joints. It is a disabling and painful inflammatory condition, which can lead to substantial loss of mobility due to pain and joint destruction. RA is a systemic disease, often affecting extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and muscles.

Stiffness, swelling, and pain in and around certain joints, especially after not moving for a while (for example, when waking). Affected joints typically include hands, fingers, wrists, ankles, feet, elbows, and knees. Generally, if a joint on the right side of your body is affected, the same joint on the left side is also affected. Feeling tired and run-down with swollen lymph glands, a low fever, little or no appetite, and weight loss. Appearance of small bumps under the skin near the affected joints.

Fibromyalgia has often been called the "great imitator" because so many of its symptoms mimic those of other disorders. As a result, it can often be difficult to receive a proper diagnosis of fibromyalgia. However, there are subtle differences between many of the illnesses and FMS. Learning more about each of these disorders can help you figure out just how fibromyalgia is distinct from them.

Common disorders that fibromyalgia is often mistaken for include:
• Lyme disease
• Lupus
• Osteoarthritis
• Rheumatoid arthritis
• Cushing's syndrome
• Hypothyroidism
• Polymyalgia Rheumatica
• Reflex sympathetic dystrophy syndrome
• Cervical spinal stenosis

They all sounded like a good possibility. In fact, it's common to have both SLE and Fibromyalgia simultaneously. But, the tests for RA (Rheumatoid Arthritis) and SLE (systemic lupus) came back normal. The Anti-nuclear Antibody (ANA) test (to determine if antibodies to cell nuclei are present in the blood), the Double- Stranded DNA (to determine if there are antibodies to the genetic material in the cell) and Sedimentation rate, or ESR (to determine systemic inflammation) came back within normal range.

I began to do my own research, and found that at the beginning of autoimmune diagnoses, one may not show any abnormalities in the blood for up to a year. To make things more complicated, I discovered that these diseases were not cut and dry to diagnose, as they differ from each individual.

The interpretation of all these tests, and their relationship to symptoms, can be difficult. When a person has many symptoms and signs of lupus and has positive tests for lupus, it is easier for physicians to make a correct diagnosis and begin treatment. It is more common for an individual to report vague, seemingly unrelated symptoms of achy joints, fever, fatigue, or pain, and to have negative or borderline test results. Fortunately, with growing awareness of SLE, an increasing number of physicians will consider the possibility of lupus in the diagnosis. While these tests are useful only when their strengths and limitations are understood, in the hands of skilled physicians these are important tools that assist in diagnosing lupus.

http://www.lupus.org


Meanwhile, my pain had spread more to my wrists and hands, which became red and so swollen that I had to take off my rings. My ability to do small domestic chores like laundry or opening cans had become increasingly difficult. Caring for my hair was becoming an incredible burden, so I asked my mother, who was a stylist at one time, to cut it off. Even after she did, my arms and hands were even tired from styling my short hair. In fact, I noticed my hair was beginning to fall out.

As of February 21, I saw my first rheumatologist, who ordered more blood work. I am surprised at this point that I have any blood left. He ordered a CCP, which is a new test to determine the early stages of Rheumatoid Arthritis, as well as another ANA test Anti-nuclear Antibody (ANA) test (to determine if antibodies to cell nuclei are present in the blood) and what is called "C complement tests" - C3 and C4. If the total blood complement level is low, or the C3 or C4 complement values are low and the person also has a positive ANA, some weight is added to the diagnosis of lupus. Low C3 and C4 complement levels in individuals with a positive ANA may signify the presence of active disease, especially kidney disease.

All these tests will determine whether my own body is mistaking itself for a disease. These last tests will not come back for another week or so. But since he didn't examine me for more than 5 minutes and just threw pills at me for pain, I am going to see another rheumotologist.

An added update: My boss has decided to "terminate" me because of my "poor work attendance." Though she AND her boss are well aware that I applied as well as have been APPROVED for short-term disability, they have nonetheless violated the Maine Humane Rights Act and terminated someone who is ill. I have appealed this, and have a good lawyer to go forward.

My boss has been nothing short of manipulative ever since I took that job, and now my health insurance, which is what I need to regain my health, will be taken from me, not to mention perhaps my apartment. Unfortunately, Maine's employment laws are very lax and the only law that exists is the "Employee at Will" law that states I can leave my job at any given time if I don't like it. It doesn't protect me from a boss of the same sex who has been harassing and discriminating against me over the last eight months. She would either need to be a man or I would need to appear of a different race in order for that to stick because Maine can be so backwards. Nevertheless, she terminated me AFTER I was approved for short-term disability.

Even though I am on short-term disability, it is barely enough to survive and my earnings won't be enough to pay for COBRA, medication and doctor visits, further testing, food, utilities, gas, rent, etc. I am already in the process of applying for food stamps.

I know that I needed to get this whole terrible and inexcusable experience out of my system and type this out of my fingers. Friends who I worked with can't believe that this has happened to me. I am still beside myself. Besides the endless pain all day or the shortness of breath and exhaustion from just even taking a short walk or shower, I have been terminated from my job, leaving me with no financial foundation, as if I have been going on vacation this whole time and making up these symptoms… even the two trips to the ER in December and January seem to not convince them.

Today I knew I just needed to get this out of my body by writing this, but I know I will pay for this later because even now, my hands are aching, even after I have taken several breaks writing this. Tonight, my hands, wrists and forearms will continue to swell and pound or will wire electric-type shooting pains from their exertion, despite the meds I have been prescribed. But I had to get this out of me.

The hope for me is when I will finally have a diagnosis and some form of treatment that will work, I can continue on with my life. Hopefully I can work part-time when I am well enough. Hopefully my lawyer and my action of appealing my termination as well as holding a Disability Discrimination Claim will aid me in securing some form of health insurance for a short time, if nothing else.

I keep telling myself this is all for a good reason, this can't be happening for nothing. This all must be happening because I need to be on a better path. And I think, maybe I needed a nudge to do and be something more instead of continuing to work with those demeaning and negative people in that pathetic office. To do and be something more. To manifest my highest self.



And here I am, writing again...