The First Year of Sickness
I have made this a public post because I know how helpful reading other people's experiences was for me when I was dealing with the fear and exhaustion of going through the diagnosis process. A separate friends-locked post will follow.
It started on the evening of April 30, 2008. I had a sudden gastrointestinal upset and was violently ill. The next morning I still felt dizzy and wiped out and went to the doctor. Although she gave me some antibiotics to fight the stomach bug that she thought it was I was concerned that in the previous nine months I had had an unusual number of infections ranging from sinusitis, bronchitis & laryngitis to a stomach ulcer and one in a nailbed. So we did a House style work-up and ruled out all kinds of immunocompromising conditions, including LUPUS.
The week before I got sick I had also found an enlarged lymph node in my right armpit, so of the remaining things on the table cancer was a leading possibility. After multiple ultrasounds, cat scans and a mammogram I was about to have my lymph node biopsied when I found a dark horse possibility in the medical literature. In searching for articles on the differential diagnosis of lymphadenopathy I came upon references to an obscure infection called 'brucellosis.' Only 200 cases are reported in the US each year, mostly slaughterhouse workers and others in close contact with livestock. But wouldn't you know that yours truly, being an anatomical nerd, had spent the previous two weeks all up in the bones of the paschal lamb from passover? And the symptoms were identical to mine: profound fatigue, a low-grade fever that went up and down throughout the day, chills and night sweats, and pain throughout my body.
When the test came back positive in mid-June, I gleefully started a six week course of antibiotics and patted myself on the back for being such a medically savvy smarty-pants. I knew it would take weeks to get back on my feet but I was optimistic that I could get back to work FT sometime in July. As the fates would have it though I was hit with a second wave of fatigue and nausea, which I would have chalked up to the antibiotics had I not also felt familiar sensations in my breasts and pelvic area. Three days before my missed period at the end of June I confirmed my suspicions that I was pregnant.
I will cover what happened in my relationship separately, but suffice it to say that I would have given birth around March 6th of this year, and I did not. I had a difficult post-partum period, bleeding for the last two weeks of July, and the near constant cramping and PTSD from the experience triggered a flare up of my IBS. My bHCG levels also didn't return to normal until October. I tried to go back to work full time but was unable to manage it and I scaled my hours back again. In August my health took another turn for the worse. The fatigue and pain returned worse than they had been before, including shooting nerve pain down my arms and legs that hit my 9/10. For those of you that know me well you can understand what that means. I am the girl whose father had to tell me that I needed to tell the doctor where it hurt when he was moving my broken arm back and forth.
I was seen, tested and evaluated by a series of specialists, each one declaring me an enigma. At last when they had found nothing in repeat lab tests and blood cultures, and having ruled out a return of the brucellosis, I was diagnosed with Chronic Fatigue and Immunodeficiency Syndrome and Fibromyalgia in November 2008. By then my short-term disability policy at work had run out and we came to a mutual agreement for them to let me go, since it would likely be months before I could return. It was a great relief to be rid of the stress and to be able to focus on my recovery, and my mood improved (also helped by psych meds I started in September.) The new stresses I have faced though have been applying for long-term disability (and currently conducting an appeal of their denial), seeking out and applying for various social services, the full-time enterprise of finding and managing an extensive care team, and caring for myself and my daughter.
I will spare you the rest of the medical exposition, but for my own amusement I have pulled together the last year by the numbers.
Doctor's Visits
PCP 10
Psych 47
Acupuncture 4
OB/GYN 3
Infectious Disease 3
Gastroenterology 3
Hematology/Oncology/Internist 3
Neurology 3
Sleep 5
Rheumatology 3
PT 36
Biofeedback 16
Average per week 2.6
Total # of Medical & Allied Health Pros Seen (excluding radiologists, lab techs, etc.) 21
Units of Blood & Urine Collected 40
Procedures
X-Ray - Chest 1
Ultrasound - Axillary 2
Ultrasound - Uterine 2
Ultrasound - Transvaginal 2
Cat Scan - Abdominal 1
Cat Scan - Chest 1
Mammogram 1
Abortion 1
Colonoscopy 1
Biopsy - Polyp 1
EEG 1
Brain MRI 1
Sleep Lab 2
Durable Medical Equipment
Cane
CPAP
TENS Unit
Medications
Prescriptions Taken over the Last Year 15
Current Prescriptions 5
Supplements 3
Over-the-Counter 3
Pills Taken per Day 33
Work/Finance
Number of Full Days Worked 12
Wages Lost to Illness $45K
Medical Charges to Insurance $62K
Medical Expenses Paid Out of Pocket $11K
I have lost a job, an income, a child, a partner, my physical ability and my independence. What I have gained is a fierce determination not to compromise my physical or mental health for anyone or anything again. I have proven anything I ever needed to prove in my career and in my personal life. I am now dedicated to the work of rebuilding myself, better, stronger and happier than I have ever been - I have the technology.
It will likely take another year or two for me to complete my physical rehab, but while I would very much like to get back to work I am also happy to have a universe-mandated psychospiritual sabbatical. In the meantime I am working multiple 12 step programs to overcome various unhealthy compulsions. As a result I have not smoked 3,000 cigarettes in 11 weeks, have lost 40 pounds (despite being largely sedentary) and came to a place of certainty that I am not crazy and can stop sabotaging myself.
Every day I wake up blessed to know that I have the strength within me to find joy and connection with the universe and my fellow beings. And while I am incapacitated I am learning to accept the dividends of all the love and generosity I have put out into the world and to let myself be cared for by one and all. I am no longer searching for a witness to my pain, for I am my own witness. I am no longer interested in martyring myself for another's salvation in a misguided hope that I will then be deemed worthy.
For, lo, I am a rock star and I will no longer make any apologies for my strength, my talents, my intelligence or my joy. I have wrapped up the past 20 years of pain and suffering with a bow and am ready to spend the next fifty manifesting like crazy. Thank you for being with me on the path. <3
It started on the evening of April 30, 2008. I had a sudden gastrointestinal upset and was violently ill. The next morning I still felt dizzy and wiped out and went to the doctor. Although she gave me some antibiotics to fight the stomach bug that she thought it was I was concerned that in the previous nine months I had had an unusual number of infections ranging from sinusitis, bronchitis & laryngitis to a stomach ulcer and one in a nailbed. So we did a House style work-up and ruled out all kinds of immunocompromising conditions, including LUPUS.
The week before I got sick I had also found an enlarged lymph node in my right armpit, so of the remaining things on the table cancer was a leading possibility. After multiple ultrasounds, cat scans and a mammogram I was about to have my lymph node biopsied when I found a dark horse possibility in the medical literature. In searching for articles on the differential diagnosis of lymphadenopathy I came upon references to an obscure infection called 'brucellosis.' Only 200 cases are reported in the US each year, mostly slaughterhouse workers and others in close contact with livestock. But wouldn't you know that yours truly, being an anatomical nerd, had spent the previous two weeks all up in the bones of the paschal lamb from passover? And the symptoms were identical to mine: profound fatigue, a low-grade fever that went up and down throughout the day, chills and night sweats, and pain throughout my body.
When the test came back positive in mid-June, I gleefully started a six week course of antibiotics and patted myself on the back for being such a medically savvy smarty-pants. I knew it would take weeks to get back on my feet but I was optimistic that I could get back to work FT sometime in July. As the fates would have it though I was hit with a second wave of fatigue and nausea, which I would have chalked up to the antibiotics had I not also felt familiar sensations in my breasts and pelvic area. Three days before my missed period at the end of June I confirmed my suspicions that I was pregnant.
I will cover what happened in my relationship separately, but suffice it to say that I would have given birth around March 6th of this year, and I did not. I had a difficult post-partum period, bleeding for the last two weeks of July, and the near constant cramping and PTSD from the experience triggered a flare up of my IBS. My bHCG levels also didn't return to normal until October. I tried to go back to work full time but was unable to manage it and I scaled my hours back again. In August my health took another turn for the worse. The fatigue and pain returned worse than they had been before, including shooting nerve pain down my arms and legs that hit my 9/10. For those of you that know me well you can understand what that means. I am the girl whose father had to tell me that I needed to tell the doctor where it hurt when he was moving my broken arm back and forth.
I was seen, tested and evaluated by a series of specialists, each one declaring me an enigma. At last when they had found nothing in repeat lab tests and blood cultures, and having ruled out a return of the brucellosis, I was diagnosed with Chronic Fatigue and Immunodeficiency Syndrome and Fibromyalgia in November 2008. By then my short-term disability policy at work had run out and we came to a mutual agreement for them to let me go, since it would likely be months before I could return. It was a great relief to be rid of the stress and to be able to focus on my recovery, and my mood improved (also helped by psych meds I started in September.) The new stresses I have faced though have been applying for long-term disability (and currently conducting an appeal of their denial), seeking out and applying for various social services, the full-time enterprise of finding and managing an extensive care team, and caring for myself and my daughter.
I will spare you the rest of the medical exposition, but for my own amusement I have pulled together the last year by the numbers.
Doctor's Visits
PCP 10
Psych 47
Acupuncture 4
OB/GYN 3
Infectious Disease 3
Gastroenterology 3
Hematology/Oncology/Internist 3
Neurology 3
Sleep 5
Rheumatology 3
PT 36
Biofeedback 16
Average per week 2.6
Total # of Medical & Allied Health Pros Seen (excluding radiologists, lab techs, etc.) 21
Units of Blood & Urine Collected 40
Procedures
X-Ray - Chest 1
Ultrasound - Axillary 2
Ultrasound - Uterine 2
Ultrasound - Transvaginal 2
Cat Scan - Abdominal 1
Cat Scan - Chest 1
Mammogram 1
Abortion 1
Colonoscopy 1
Biopsy - Polyp 1
EEG 1
Brain MRI 1
Sleep Lab 2
Durable Medical Equipment
Cane
CPAP
TENS Unit
Medications
Prescriptions Taken over the Last Year 15
Current Prescriptions 5
Supplements 3
Over-the-Counter 3
Pills Taken per Day 33
Work/Finance
Number of Full Days Worked 12
Wages Lost to Illness $45K
Medical Charges to Insurance $62K
Medical Expenses Paid Out of Pocket $11K
I have lost a job, an income, a child, a partner, my physical ability and my independence. What I have gained is a fierce determination not to compromise my physical or mental health for anyone or anything again. I have proven anything I ever needed to prove in my career and in my personal life. I am now dedicated to the work of rebuilding myself, better, stronger and happier than I have ever been - I have the technology.
It will likely take another year or two for me to complete my physical rehab, but while I would very much like to get back to work I am also happy to have a universe-mandated psychospiritual sabbatical. In the meantime I am working multiple 12 step programs to overcome various unhealthy compulsions. As a result I have not smoked 3,000 cigarettes in 11 weeks, have lost 40 pounds (despite being largely sedentary) and came to a place of certainty that I am not crazy and can stop sabotaging myself.
Every day I wake up blessed to know that I have the strength within me to find joy and connection with the universe and my fellow beings. And while I am incapacitated I am learning to accept the dividends of all the love and generosity I have put out into the world and to let myself be cared for by one and all. I am no longer searching for a witness to my pain, for I am my own witness. I am no longer interested in martyring myself for another's salvation in a misguided hope that I will then be deemed worthy.
For, lo, I am a rock star and I will no longer make any apologies for my strength, my talents, my intelligence or my joy. I have wrapped up the past 20 years of pain and suffering with a bow and am ready to spend the next fifty manifesting like crazy. Thank you for being with me on the path. <3