At this point in the story, a timeline seems to be in order. This whole saga can get downright confusing to follow, even for myself!
September 2007-- first sinus infection, during pregnancy.
February 2008-- Annaliese is born, acute symptoms have lasted throughout pregnancy forcing me to quit my job several months prematurely.
March 2008-- Visit to primary doctor, referral to ENT. First CT scan taken and visit to ENT who recommends sinus surgery and puts me on an extended course of antibiotics to see if it can be cleared without surgery. I also began seeing an Allergy & Asthma specialist, and was tested via skin and blood work for allergies, but none were discovered.
June 2008-- Symptoms are still present; we get a second opinion but it's the same as the first. New ENT puts me on more antibiotics and we discuss the use of steroids for the first time.
August 2008-- First course of steroids while on vacation in Hilton Head. Annaliese had to be weaned during this time because of the potential of the steroid getting into the breast milk. She was six and a half months old, and I had planned to go past the one year mark I had weaned the older two at. The steroids made me feel crazy but suddenly I could breathe again for the first time in almost a year!
September 2008-- Although the steroids helped, once they were finished, my symptoms returned. Agreed to do sinus surgery.
October 31, 2008-- First Endoscopic Sinus Surgery, Pottstown Hospital.
December 2008-- Still have not returned to any sort of baseline. ENT does not understand why I am not any better than before.
February 2009-- Annaliese turns 1! I seek out a new ENT at Pennsylvania Hospital in Philadelphia, because there has been no improvement since surgery at all. I also put in my notice at my current job, which I had just started in September, because the illness was making it extremely difficult to work. There goes the extra income, again...!
May 2009-- Second Surgery (Revision), Pennsylvania Hospital.
July 2009-- Feeling great for the first time in nearly 2 years!! I baked cookies for the staff at my ENT and wrote him a note thanking him for his efforts and for "giving me my life back".
September 2009-- The symptoms start to creep back. I put in a prayer request at church for healing (something I normally would never do) because I was facing the depressing realization that this just might not go away.
November 2009-- Antibiotics and steroids, along with diligent nasal irrigation has led to an improvement. Not 100%, but much better. Jon & I began to get active in our church, which was revitalizing.
Winter 2009-- I began working as an Intern for the church and also leading a small group with Jon. The illness was in a manageable state. I was frequently put on antibiotics per my ENT and/or allergist, but they seemed to work and I would be back to mostly normal after a couple of weeks. Sometime this winter I have my first asthma attack one night after eating a Mrs. Smith's cherry pie. I was re-tested for allergies not long after, but the results showed nothing, yet again.
January 2010-- Symptoms are back, mostly in the form of fatigue, achiness, and high volumes of discolored mucus. I need to take Tylenol for the aches, and every day I have to rest in the afternoon.
Winter-Spring 2010-- The illness comes and goes; it is affecting my life and limiting my energy for the internship, but because of all the positive things going on, I am not as depressed by its presence. Doctors say it's just because of having young kids, I am exposed to (and catch) every virus. Time for the denial to begin...
June 2010-- Reinstated my social work license and took my dream job as an outpatient therapist at a clinic just down the road. Took the kids to Ocean City, NJ with my best friend from high school and had a fantastic time. I was off my allergy meds in order to undergo allergy testing the following week, and on the last day, I began to have breathing issues. I needed to use my rescue inhaler and take all of my meds, which sabotaged the testing. Officially I have "reactive airways," but clearly it is more of an issue now than it was a year ago.
August 2010-- After two months of having no symptoms and feeling great, the malaise and fatigue begins to return the last weekend of August while we were visiting good friends. It starts out like a cold is coming on, but turns into another infection. I am put on antibiotics once again, and it is around this time that I finally start seeing my first clients.
September 2010-- Finally had the allergy testing repeated. Nothing. Again. The allergist is finally saying I have asthma, second to my severe case of chronic sinusitis. This I overheard as he was summarizing my case to an intern, which for some reason made me want to cry.
October 2010-- I begin to "check out" of my social life. I am working now two nights a week, and in order t have the energy to do that, I have to minimize other things in my life. At this point I have adopted a "one activity per day" rule that applies to taking the kids out, going to play group, church, work, anything. It's not that it makes me healthier-- it's just a way to make sure I don't pass out on the couch at 4 PM, unable to make dinner for my family.
Thanksgiving 2010-- A horrible case of strep throat sent me to my Primary doctor's office the day after Thanksgiving. I missed the turkey day completely, not that I could have swallowed one bite, the pain was so excruciating. Although antibiotics were called in, I went in person the next day because of how seriously ill I felt. Jon came too, and we told the doctor that I had been sick for more than three years now with chronic sinusitis, and now this: did he have any new advice or opinions? He did not.
December 2010-- Health back to baseline in time for Christmas. Baseline for me over the course of this illness is not perfect health, but a low level of fatigue, facial pain and pressure, and nasal discharge. It also usually means I am on antibiotics and/or steroids, as well as all my other prescriptions and OTC medications. Right before Christmas, I underwent an Upper GI Endoscopy, complete with anesthesia, in order to rule out my ENT's long-standing theory that reflux could be triggering the inflammation in my sinuses. The findings were normal.
January 2011-- I am hit hard with a fresh infection just after the new year. Back to the ENT, who I have been seeing for two years now about 6-9 times per year.
February 2011-- This is the limit. I have been sick straight for two months and there is no end in sight. One night, Jon realizes we have the resources because of his job to move away from these harsh winters that seem to be making everything worse for me. At least, that is what the allergist and ENT have said is the reason for my repeated infections and asthma flare-ups this year, and our research and conversations with other experts have confirmed that the environment can be a trigger. Surgery is discussed again, as well as having our home tested for mold, which we do immediately (and quite expensively). No mold. There is nothing left to blame, nothing else to try, but to consider a move.
March 2011-- I put in my notice at work. This time, it's not the demands of the job (my previous job working with delinquent youth was intense), I am just too sick to be able to give my clients the attention they need and deserve during our sessions. This is the same reason I quit my first job, the one I'd had all during my baby-birthing years which was so suited to our lifestyle because of it's flexibility. At this point, the denial is starting to fade as Jon & I realize I am not capable of working in any capacity, at least in the near future.
April 2011-- We make the long trek to Southwest Florida via Hilton Head, to see if it is a place we could see ourselves living in. It is. Though it's hard to tell if I "feel better" while here, because I was put on antibiotics the week of the trip, during a routine follow up visit regarding my asthma, and my symptoms were still present to a mild degree while on the trip.
May 2011-- Despite being on antibiotics for more than a month, my symptoms become worse yet again. I call the ENT and ask to get put on the surgery calendar. There is no sense waiting any longer, as I am obviously not getting better. Meanwhile, we are preparing to move.
May 16, 2011-- Functional Endoscopic Sinus Surgery (FESS), attempt number 3, Pennsylvania Hospital. Immediate relief, energy just in time for packing.
June 2011-- The move to Florida begins! Before we can leave town, I have to make a quick stop to the primary doctor for antibiotics & steroids, as I already have an infection.
July 2011-- Starting over in Florida... Still sick, antibiotics are not working.
August 2011-- Examining diagnosis of Chronic Fatigue Syndrome (CFIDS) leads to discovery of local ENT doing "peptide therapy"
September 2011-- Peptide therapy begins. Stopped all allergy medications. Some improvement after 6 weeks. Reduction in fatigue and pain.
November 2011-- Sinus infection symptoms worsen. Emergency visit to ENT leads to a new treatment using a "nasal nebulizer" for delivery of antibiotics, antifungals, and steroids (severe polyps present). Had to stop Peptide therapy because of the addition of these drugs. Also started taking Singulair again for allergy & asthma symptoms. Diagnosed with "Samter's Triad" as underlying cause of chronic sinusitis w/ polyps.
December 2011-- First time free of sinus symptoms since just post-surgery. Other than a couple weeks of not feeling sick (but recovering from surgery, the worst recovery of all 3), this is the first time I have felt not-sick since August 2010.
Jan-March 2012-- Health!!!!!!!!! Minimal sinus issues, minimal medications (Singulair & nasal steroid), energy coming back.
April 2012-- Sinus symptoms & fatigue return, possibly due to allergy season? However, no infection per ENT exam.
May-June 2012-- Severe fatigue continues, ends with a 3 week detox diet & healing prayer and nutritional counseling.
July 2012-- Severe asthma attack (urgent care clinic visit) while visiting PA to sell the house; we swiftly made plans to return to FL believing that the environment (air quality etc) up there is a major cause of my triggers.
August 2012-- Move to Central FL
2012- spring 2014 Ongoing bouts of fatigue and less frequent, but periodic sinus infections. Not as severe but continuing to require daily Singulair and occasional courses of steroids (4-6 times/year)
December 2013-- Working again as health has been relatively stable for the past 6-9 months.
March 2014--3 week course of prednisone at 60 mg/day (highest I've ever had), causes hypomanic symptoms but eliminates the polyps that ENT discovered & allergist wanted removed prior to aspirin desensitization.
April 2014-- Finally!! Aspirin Desensitization Protocal at Brigham & Women's Hospital Allergy Clinic (Dr. Tanya Laidlaw).
Summer 2014--Fatigue levels are very low, almost completely back to normal. Running again regularly, working part-time, keeping up with my kids (3 in school full days now), and not crashing as hard when I have super busy weeks. Still get exhausted when we do extras, like hosting guests or traveling, but my recovery time back to normal is shorter than it used to be, and I have not had a sinus infection since the protocol. have not been back to ENT to have polyps checked, but based on breathing (good) and sense of smell (decent), it seems they have stayed away.
June 2011-- The move to Florida begins! Before we can leave town, I have to make a quick stop to the primary doctor for antibiotics & steroids, as I already have an infection.
July 2011-- Starting over in Florida... Still sick, antibiotics are not working.
August 2011-- Examining diagnosis of Chronic Fatigue Syndrome (CFIDS) leads to discovery of local ENT doing "peptide therapy"
September 2011-- Peptide therapy begins. Stopped all allergy medications. Some improvement after 6 weeks. Reduction in fatigue and pain.
November 2011-- Sinus infection symptoms worsen. Emergency visit to ENT leads to a new treatment using a "nasal nebulizer" for delivery of antibiotics, antifungals, and steroids (severe polyps present). Had to stop Peptide therapy because of the addition of these drugs. Also started taking Singulair again for allergy & asthma symptoms. Diagnosed with "Samter's Triad" as underlying cause of chronic sinusitis w/ polyps.
December 2011-- First time free of sinus symptoms since just post-surgery. Other than a couple weeks of not feeling sick (but recovering from surgery, the worst recovery of all 3), this is the first time I have felt not-sick since August 2010.
Jan-March 2012-- Health!!!!!!!!! Minimal sinus issues, minimal medications (Singulair & nasal steroid), energy coming back.
April 2012-- Sinus symptoms & fatigue return, possibly due to allergy season? However, no infection per ENT exam.
May-June 2012-- Severe fatigue continues, ends with a 3 week detox diet & healing prayer and nutritional counseling.
July 2012-- Severe asthma attack (urgent care clinic visit) while visiting PA to sell the house; we swiftly made plans to return to FL believing that the environment (air quality etc) up there is a major cause of my triggers.
August 2012-- Move to Central FL
2012- spring 2014 Ongoing bouts of fatigue and less frequent, but periodic sinus infections. Not as severe but continuing to require daily Singulair and occasional courses of steroids (4-6 times/year)
December 2013-- Working again as health has been relatively stable for the past 6-9 months.
March 2014--3 week course of prednisone at 60 mg/day (highest I've ever had), causes hypomanic symptoms but eliminates the polyps that ENT discovered & allergist wanted removed prior to aspirin desensitization.
April 2014-- Finally!! Aspirin Desensitization Protocal at Brigham & Women's Hospital Allergy Clinic (Dr. Tanya Laidlaw).
Summer 2014--Fatigue levels are very low, almost completely back to normal. Running again regularly, working part-time, keeping up with my kids (3 in school full days now), and not crashing as hard when I have super busy weeks. Still get exhausted when we do extras, like hosting guests or traveling, but my recovery time back to normal is shorter than it used to be, and I have not had a sinus infection since the protocol. have not been back to ENT to have polyps checked, but based on breathing (good) and sense of smell (decent), it seems they have stayed away.
