Monday, May 30, 2011

No More Biaxin For Me!

At dinner tonight I took my final Biaxin pill.  This has been the antibiotic of choice for me over the past two years, since I became resistant to the first-line stuff, and then the others (Z-packs, levaquin, to name a few).  It is a fairly powerful antibiotic, even though it doesn't usually do much for me personally.  Baxin is known for its annoying side effect of leaving a nasty metallic taste in your mouth for the duration of its course.  It's worse when it first enters the bloodstream, but fades a bit later on.  Since I take it at dinner, by 9 PM the taste is so strong I want to eat something, just to mask it in my mouth.  I also wake up in the morning with horrible metal morning breath.  Really nice.

But today is the last one.  Hopefully for a very, very long time.

I have been on Biaxin almost continuously since early April according to my CVS.com records.  I actually started a course just a couple of days before we left for Florida just before Easter.  I carried the metal taste and the twice-a-day-don't-forget dosing with me down the East Coast as we stopped at hotels, visited relatives, and looked at rental properties and beaches.  When I got home, I was still feeling sick, so I did some investigating of my prescription history (see my side page "Do you know your Rx history?" for more about this topic).  Turns out, my allergist didn't prescribe the higher dose which he and my ENT normally would.  Which was interesting, because I noticed while on vacation that the metallic taste wasn't as bad as usual, and I sort of figured it was a not a good thing as far as its bacteria-zapping power was concerned.  So I called the allergist's office and explained that I was still no better than before the 10 day course, and that I noticed the dose wasn't as strong as usual.  When the doctor called back he didn't address that, but did agree I needed another course and he was "willing" to prescribe the higher dose.  Strange, because he'd given it to me not that long ago, in November.

This was the end of April: I started another 10 days.  Then I had about a week off during which I had to start the steroid Prednisone 5 days prior to surgery, and then was sent home from the hospital with another 2 weeks of Biaxin and a Prednisone taper.  It's been a week now since the Pred finished, which is a wonderful thing since the stuff makes me rather nutty with insomnia and mild mania.  Good for the housework, bad for the body.  And now, finally, I am done with Biaxin.  Six weeks since I started it-- this time around.

I won't get into the details, but I had back-to-back courses of Biaxin throughout all of February as well.  And before that, late November.  Before that, September.  And before that... well, it just keeps going back.

So for now, I am just incredibly relieved to be looking forward to a future without this metal taste in my mouth.  I supposed I should savor it right now.  I might never have the chance to experience it again.

Thursday, May 26, 2011

The Old Me is Back

Yesterday was the first day I felt like myself since the surgery, but today was completely different.  I felt like myself-- my old self.  I actually woke up feeling refreshed, not exhausted, even though I had woken once during the night.  The first thing on my mind was breakfast, and I had a strong craving for a veggie omelet.  Before Jon was out of bed I was showered, dressed, and chopping green and red peppers.  At 7:30 AM.  Without even a cup of coffee to get me going. 

When the omelet was ready, I served Jon and then watched in satisfaction as my family was happily enjoying a healthy, fresh breakfast of whole wheat mini bagels, sliced kiwi, and veggie omelet.  And it's because I am back.  The real me.  I guess that was why I had woken at 2 AM this morning with a prayer of "Thank you, God, for your goodness."  I knew I was back, and it was going to be a good day.

And it was. 

Wednesday, May 25, 2011

Good News!

I had my post-op appointment today in Philadelphia.  My ENT was not surprised when I told him I was more wiped out this time than the last; he described a lot of work that was done near my left eye, and both sides of my forehead.  He said it was a long procedure, compared to average, but so far it appears to have been successful!  My sinuses are healing "beautifully," and everything is clear and open.  I am now clear to resume my twice a day irrigation, and to run (he brought it up, not me!).  My next and last follow-up will be in two weeks, and then, if everything continues to heal well, I am done with going to the ENT!  At least, that is the prayer since we have obviously been down this road before.

Meanwhile, on the drive into the city, we got a call from the Realtor in Florida letting us know our application was approved!  After weeks and weeks of scouring realtor.com and listingbook, we finally know where we will be living and it is gorgeous!  A water view and in ground pool, as well as my dream kitchen and an office for Jon.  God is so faithful, as we knew he would be!  Now it's time to really kick into action with the rest of the packing and prepping of our home for the family who will be renting from us. 

The Rest of the Story

It's been nine days since my surgery, and I am finally feeling like myself for the first time today.  I can breathe fairly clearly, but it takes great effort to actually feel the air flow when I inhale, which means there is still considerable swelling in the nasal passages.  This afternoon I have my follow-up with my doctor to see how things have healed.  The "seeing" part involves a nasal endoscopy, a procedure I endure about 6-9 times per year which involves having a camera inserted through each nostril and up into the sinuses.  The doctor moves it all around in order to see where there is swelling and disease, or possibly polyps.  Usually it's not more than a little bit uncomfortable for a few minutes, but today I am supposed to take a Percocet because my sinuses are still healing and that little camera will be bumping all around in there.  Since I just remembered yesterday about the Percocet instructions (he told me while I was being prepped for anesthesia last Monday), poor Jon is scrambling to figure out how to fit in taking an entire afternoon off to bring me to downtown Philadelphia.  It will work out, but he's worn out from taking care of me for a week and half, and juggling a bigger workload since a coworker abruptly quit last Friday.

Plus, we are still putting together the details of our moving plan, which is all of a sudden much more stressful than it seemed a few weeks ago.  We applied for a gorgeous pool home rental, and are waiting to hear back  so we can exhale a little bit.  With that "minor" detail almost resolved, the question of how exactly to transport our family & belongings is being revisited.  It's one of those conundrums where there are many unappealing options to choose from, and we just can't seem to make up our mind.  We have a representative from a large moving company coming tomorrow to give an estimate of our things.  That information will help us get more accurate quotes from the "you pack, we drive" people, and from there we will decide whether it's worth it to have someone else drive our stuff, or to just use the Ryder we've already reserved and make the long journey ourselves.

I realize I need to get back to my story but I am stuck.  I am not sure how to summarize the past two and a half years since my first surgery; I feel like I could write a book.  But it would be the most boring book ever!  Instead, I put together a timeline and posted it under "My Pages".  It is not completely finished, since it was done all from memory and I might add more details.  Jon is working on data collection.  He has a spreadsheet entitled "Poked and Prodded" that is based on data provided by our health insurance company for each and every "medical encounter" per family member.  As he says, "the data doesn't lie," and even though it counts each individual lab from getting blood work taken, each doctor's visit the same as a surgical procedure, it is quite staggering to see those numbers for me compared to him.  It's something like 100:9

These numbers simply reflect what I have been dealing with since this all began.  When you read about chronic sinusitis treatment, you will find that Functional Endoscopic Sinus Surgery (FESS) is supposed to be the end of the story.  According to Medline, this is only to be used when a patient fails to respond to all of the other medical interventions: topical and oral steroids, antihistamines, nasal irrigation, extensive antibiotics.  According to one study, FESS has an 80% success rate. Another study estimates slightly lower.  Either way, I have been in the minority, twice.

My first surgery did almost nothing to relieve my symptoms, and certainly had no long-term benefits.  I found a new ENT a few months later, quit yet another job to focus on getting my health back, and quickly agreed to have a revision surgery performed by my new doctor at Pennsylvania Hospital.  That second surgery took place in May 2009, almost two years exactly prior to this current one.  In the summer of 2009, I thought I had been cured. I even wrote a letter to my doctor thanking him, "for giving me my life back."  Only, it didn't last.  The fall of 2009 brought another round of infections, despite the diligent care I was taking to maintain my health.  After the second surgery, I went on a restrictive "Anti-Inflammatory" diet, followed closely the instructions to irrigate my nose and sinuses twice a day, with topical steroids, took each and every medication I was prescribed, and continued my regular exercise and other stress-reduction strategies.

Doctors did not understand why I continued to get sick.  One theory was that it was due to my constant exposure to germs via my young children.  Another was reflux, for which I took Prevacid or Priolec for years every day (even though it's supposed to be a two-week course, this was my instruction).  Yet another was regarding the cold air, especially once I developed asthma as a result of the chronic upper respiratory inflammation.  To this day we don't completely understand why.  But suffice it to say that I have been sick from September through May nearly 100% of the time for the past three years.  Summers have provided a respite for the past two years, since my second surgery.

By this February we had ruled out: autoimmune disease, compromised immune system, reflux, allergies, and mold in the home.  We had no variables left to control for, other than the environment.  Months earlier Jon had asked the doctor if he thought a change in environment or climate would help me, and his response was, "I think any change in environment would probably help at this point."  One night when I was lying sick on the couch, Jon looked at me suddenly and realized "we just can't do this anymore."  The denial that we'd been living in about the unending and debilitating nature of my illness was beginning to lift.  I realized I couldn't keep working.  I was, as my social work ethics literature states, a "compromised worker" because of how frequently I would endure sessions while feeling completely miserable.  And Jon realized that with his 100% remote job no longer requiring him to remain in the Northeast, he could easily move his base of operations to a climate that would possibly be better for me.  I realized-- and Jon agreed, since he'd experienced a pretty bad ear and sinus infection this winter and now knew what I felt like 80% of my life-- that I could not go on like this any longer.  I was not living my life to the fullest, and my family was suffering as well.

When we saw my doctor, we approached him with the idea.  He was advocating more surgery, to "open things up more," and he was not shocked by our plan.  In fact, he thought that having surgery, and then relocating, at least temporarily, to a year-round warm climate in an area with less industry and better air quality, was highly likely to be a successful combination for me.  If surgery should have worked the first two times, but didn't, it made sense to give it another shot, but with a new environment.  To do it again, and stay when history shows I break down every winter, seemed like sabotage.  And so we began the earnest prayers that would lead to confirmation over and over again that we were to give it a shot.  Research over the years had given us an idea of where might be a good place, but it was affordability combined with closer proximity to family and our life in the Northeast that led us to choose Southwest Florida as our new, long-term vacation home.

And so here we are, 9 days after surgery, totally crazed as we have our house half packed, not completely sure which home we are moving to or how we will get there.  But we know it will work out.  We have total confidence that the Lord has led us to this point, and He won't fail to provide for us now in the details that remain murky.

My prayer this week has been that of Jabez from 1 Chronicles 4:10:
"Jabez cried out to the God of Israel, 
'Oh that you would bless me and enlarge my territory!
Let your hand be with me, and keep me from harm so that I will be free from pain.' 
And God granted his request."

Monday, May 23, 2011

Sharing My Story: Part II

On Monday, May 16th, 2011 I underwent image-guided Endoscopic Sinus Surgery (ESS) for the third time.   My first surgery took place in October 2008, just over one year after a sinus infection first hit, and never went away.

It all started on my anniversary: August 7, 2007.  I was five months pregnant with our third child, working part time as a home-based family therapist and trying to keep up with 4 year old Emma and 2 year old Luke.  Jon brought me a beautiful bouquet of roses (a rare romantic gesture which I greatly appreciated) and for the first time in my life, I started to sneeze and I couldn't stop.  Once the flowers were removed from the home, I recovered but  from that point on seemed to have a greater degree of congestion and pressure in my nose.  I read online that sometimes pregnancy can change one's allergic sensitivities, so it seemed within the range of normal pregnancy symptoms.

A month or so later I was at a client's home in the heat of the late summer.  The client, a smoker who usually did not smoke around me, especially once I was pregnant, had apparently smoked a few cigarettes just before my arrival.  There had been no where for the smoke to dissipate since she kept her windows shut to keep the "cool" air in (she did not have air conditioning).  Within minutes, I could literally feel every open space in my head fill with fluid.  The pain was intense, and I could hardly breathe or even speak.  I struggled through one hour of my session and then left in agony.  From that point on, my sinuses have never been healthy again.

My midwives assured me that the congestion would subside; it was merely a side effect of being pregnant, and possibly a bit of a cold or infection along with it.  I think I went to the regular doctor once or twice, that fall, but I'm not sure. I may have been given an antibiotic.  I don't recall being told I had a sinus infection, or that I should take any medication to relieve the congestion (I assume because of the potential threat to the baby, although there are various options I wish I had tried, in hindsight).  I was told to do steam baths, to use saline spray, and to "hang in there" because it would all go away when the baby was born in January.

It didn't.

Annaliese was born a week past her due date on February 6, 2008.  It was a beautiful, speedy natural labor made perfect by the presence of Jon and my mom as my birthing coach.  Annaliese was healthy in every way, and I was immensely relieved to have her outside of my body so that I could find some relief from my nasal congestion and pain.  Although initially I was able to breathe more easily, it was not less than a month after she was born that I was back at my primary doctor's office, sick.  This time I remember being told I had acute and possibly chronic sinusitis, given the length of time I had reported having symptoms (more than 6 months).  She suggested that at this point I see an Ear, Nose, and Throat specialist, who would use a CT scan of my sinuses to determine the extent of the disease.

I saw my first ENT a few weeks later, and began the process of trying to understand what surgery would entail and why I should have it done.  There were many potential dangers, and with young children Jon and I took these concerns seriously.  By the summer, when my symptoms still had not subsided despite the addition of an extended course of antibiotics, I was ready to sign up.  Sadly, undergoing the surgery meant I had to wean Annaliese prematurely due to the preparatory steroids I had to take, as well as more courses of antibiotics.

Friday, May 20, 2011

Sharing My Story: Part I

Many people who know me know something about my struggles with sinus issues.  It would be hard, at this point, to not know this about me, if in fact, you've known me at all over the past three and a half years.  I have quit three jobs over it, so all of those former coworkers of mine are well aware, as well as the members of groups I've stepped out of leading or attending, and of course, all of my friends hear about it, all of the time.  There hasn't been much else going on with me, other than, "How are you feeling?"  And the answer has been depressingly the same: "Not great."  But of course, always "hanging in there."  What else can you say when you've had an illness that most people experience for a week or two out of their life, once or twice a year?  Or, if you were like me, had only experienced it once before, in your entire lifetime, prior to the age of 30?

My first and only sinus infection prior to the development of this current saga took place on July 4th, 1997.  It was an eventful day.  I was brand new to Boston, waiting on the Esplanade with my boyfriend and future husband for the famous Pops Goes the Fourth Concert.  I also happened to be waiting to meet several girls from Boston College who were seeking a roommate. Figuring it best to get away from the crowds, we agreed to meet at the Copley Mall, and laughed when we finally converged in the Limited, realizing we'd walked a painful, hot couple of miles through crowds only to learn we'd all been sitting in the same spot at the concert.  With millions in attendance, it was actually quite a coincidence that we were all in sight of a middle-aged woman who apparently thought it was OK to sunbathe in an old bra and jean shorts, right in the middle of the largest crowd Boston sees each year.  Anyway, it was a big day, to say the least.  Sometime after the return walk from the mall, munching warm PB&J's on our blanket, I realized I wasn't feeling well.  Fever is hard to detect when it's 90 degrees outside, but my ears and head hurt, and I had that achy feeling that's a sure sign something is going wrong in the body.  The next day I was at the Urgent Care Clinic for antibiotics, and was told it was a particularly bad sinus infection.  I took the medicine, went on my way, and never thought about it again.  Except for that fact that it was all a part of one strange day where I met my future roommates and great friends and saw a lady wearing her underwear in public.

But now I am sidetracked.  My point is: most people experience a sinus infection like I did in college.  It comes on strong, you feel horrible, you go to the doctor or clinic, get antibiotics, get better.  End of story.  In my case, I went on with my life and remained in every way a healthy young woman.  Fit through regular running, careful of my diet, and reluctant to take even an Advil unless I truly needed it, I couldn't have told you the difference between Sudafed and Benadryl.  I was never sick.  I had two perfectly healthy pregnancies in my mid-twenties.  In 2003, seventeen hours of natural labor led to the birth of my daughter Emma Isabel, and nearly two years later in 2005, her brother Luke.  While they were babies, I nursed them and took care of myself, slept as much as any new mother could, and kept myself active in my running and a little part-time career.  My health was not something I ever considered to be at risk.  That is why it is so very strange to be starting a blog about someone who has now undergone three surgeries and taken thousands of pills to restore health to a part of my body I had barely realized existed.