Looking Back on 2012

A phone call with a dear friend has prompted me to (finally!) post an update on my blog.  As I explained to her, I had needed to take a break from the blogging in order to focus completely on my healing, and it was worthwhile.  Looking back at my last post, I realize a lot has changed since April.  As of today, I would say that I have finally broken the endless cycle that I was in for over five years.  Not that I am completely without problems, but when I do struggle with my symptoms, I am able to implement changes to my diet, routine, or add a medication and my body will respond and get back to a normal point.  In the past, once I started to "crash," nothing could stop the derailing train. 

Much of my healing has come through the move to Florida.  I believe that for me, reducing the exposure to extreme weather changes (particularly the cold), has allowed my body to recover.  The clean air we experienced while living on the Gulf Coast was amazing for my nasal passages, as were the frequent trips to the beach and swimming in both the ocean and our saltwater pool.  I rested a lot.  I limited my social commitments to almost nil, and slept a good deal more than is recommended.  I struggled with severe fatigue until late May or early June, when I connected with an amazing woman from our church who counseled me in both nutrition and emotional wellness.  While I knew my illness had a connection to stress, I never knew how much it played a role in my health issues until Michele gave me some much-needed insight.  With her help, I went on a dietary detox and found my energy returning within days.  Days led to weeks of living without the fatigue, even when I gradually returned to a more normal diet.  I fully believe that Michele helped guide me to both physical and spiritual healing, and that although it took almost an entire year, by the time we left Cape Coral I finally had found the complete healing that we had come for.

By that time, we knew we wanted to stay in Florida but decided to settle down closer to a city.  We had to trek back up North to close on the sale of our home there, while still not knowing exactly where we wanted to live in Florida.  Moving out of our rental home into a storage unit three hours away was not an easy task, but we were glad we did that when, a few weeks later, I experienced the worst asthma attack of my life while staying in PA.  It was a day of high heat and humidity, worse than any I had experienced in Southwest Florida, and, combined with what I believe is my body's sensitivity to the conditions of the local environment in that region, I had a severe reaction.  Unfortunately, I was back on the couch, without energy and without a plan of how to get back to Florida.  Thankfully, God once again was with us as we looked into renting an apartment in the area where we thought we wanted to settle, and our plans once again came together rather seamlessly.   Despite planning to spend an indefinite period of time visiting with our friends in our old community, we left in rather a haste as I was still recovering.

We now are back in Florida, in a beautiful, friendly town where we met many lovely families and friends. It took several months of house-hunting while homeschooling the three children (and Jon working) out of an apartment before we finally landed back into a home of our own on October 24, 2012.  Jon took another trip to PA in November to get the rest of our furniture and belongings, so that we are finally truly settled into our new home. 

It took a year and a half of living a gypsie's life of wandering, but by the mercy of God we are home again, at last.  Truly we have so much to be thankful for as we look back on 2012.  At the beginning of this year much of our life was uncertain: where we would live permanently, whether my health would ever improve, and many other questions that lingered.  Now we can look back and praise God for his wonderous work in our life as a family.  There are still a lot of questions and aspects of our life that remain uncertain.  Even my health being strong is not a guarantee. 

Over the course of the year I was given a more concrete diagnosis and explation for my ongoing sinus struggles:  Samter's Triad.  Another name for it is AERD (Aspirin-Exacerbated Respiratory Disorder).  In fact, this blog helped to connect me with a group of individuals suffering from the same cluster of symptoms that can overtake one's life.  I am thankful that for the moment mine are under control, but it is something that I will live with likely for the rest of my life.  I have to be very careful what I eat and how I spend my energy, but no where is it near the point where it was even six months ago.  I am back to running again, which feels amazing (last spring I tried to go from walking to running but it would wipe me out for days; now I have no reaction other than the normal soreness if I push too hard).  I can enjoy foods I love, in moderation and while listening very carefully to my body for signs that I am having a reaction.  Most of all, I am so thankful for the energy that I have again, which allows me to enjoy my kids on a daily basis, and not just from the perspective of the couch!  It is such a priviledge that I have this year to be teaching them at home, with the help of an amazing homeschool community that has become like family to us.

I pray that 2013 continues to bring us good health.  But I also pray that I will continue to be challenged enough by my circumstances to remember to put my faith--and my trust, my strength, my very self--into the hands of our Lord. 

"O God, you are my God, earnestly I seek you;...

I have seen you in the sanctuary and beheld your power and your glory.

Because your love is better than life, my lips will glorify you."

Psalm 63: 1-3

Summer Fun

Today is the first day in just over a week that I am feeling like myself again, at least mostly.  The relief is immense: no pain in my face or head, energy to keep up with the kiddos, and the ability to laugh and smile at my family again.  Possibly the infection is starting to improve; this is the first day of a slight decrease in those symptoms as well.

My strategy the past week has revolved around two things: water and rest.  For many of the last several days I have done nothing but read a book (a fantastic new novel by Kristin Hannah that I could not put down) and do a small amount of housework.  I have also significantly upped my Vitamin C intake, drinking two tall glasses of Emergen-C (1000 mg) per day.  Letting my body recover from the energy burst of the week before seems to have been the key.  Based on my new awareness of  fatigue as a significant symptom, I am now exploring my next steps for full recovery from the angle of immune dysfunction and possible Chronic Fatigue Syndrome.  New supplements are coming in the mail for me to begin, and I have my first appointment with a local holistic ENT/immunologist.  Hopefully, he will be willing to work with me in the direction I am currently taking, as well as to offer some new suggestions for me to try.

Meanwhile, I am thoroughly enjoying the reprieve from my pain and fatigue today, especially since it is coming just in time before the kids begin school in just a few days.  I played with them in the pool for almost two hours, letting them toss water balloons at me as I did some laps for exercise, and splashing around to the new kids mix I created for them on my iPod.  All three of my children have gotten amazingly better at swimming.  My older two kids are virtual fishes: swimming to the bottom of the pool to fetch a diving stick, swimming a length or two at a time in a race, doing cannonballs, and even showing an interest in learning the actual strokes.  The little one has progressed from wearing a full-body float plus water wings and still being nervous to kicking around with her face in and out of the water wearing the water wings alone.  Before I know it, she will be diving and jumping too.

Best of all, the three of them have developed such persistence and confidence that it warms my heart to see it.  Each time one of them masters a new skill or conquers a goal that has remained just out of reach (back float, for example), their sense of pride and accomplishment just oozes out and grabs hold of my own heart.  It restores my faith as it reminds me of how easy it is to lose hope, but how rewarding to stay positive and focused on goals that matter to us.

On Our Way

I am writing tonight from the home of good friends of ours in Maryland. The kids are all sound asleep (finally!) and I have a moment to write a brief update.

The movers were swift and efficient on Monday. Although, what took them 7 hours to load would have taken us days, so we were incredibly thankful for their service! After the weeks of intense packing, it was a needed luxury to hire professional movers. They loaded the last items by 7:30 PM, and we hopped in our car behind them to stay at Jon's parents' house for the night, where the children were already, having a blast. As predicted, I took my last Biaxin pill on Monday, but was not 100% better.

Yesterday was a cleaning day, and it was an all-day affair. By afternoon, the house was in good shape but my body was giving me signs that I still had not cleared the infection completely. No more achiness or fatigue (if you can even sense fatigue when you are working as hard as I was for several days straight, I am not sure), but still complete congestion in my right nostril. Zero air flow. Slightly better in the left, but overall stuffy, and certainly not the healthy type of evidence you would expect when blowing your nose. So, I called my ENT's office during the day and was told to leave a message. I received a call at 6 PM from a nurse who said he would call first thing in the morning. I informed her that we were planning to pull away at 9 AM, but there was no call by 9:30, and when I called his office, they could not tell me when he would be able to get back to me, since he was in with patience. I completely understand that, but it was so tough that it came down to the last minute, and it is difficult to get a quick response in this type of situation. Because I did not want to leave the state with no instructions or new prescription, I ended up making a last-minute appointment at my primary care doctor's office (thankfully it was within 30 minutes of my call), leaving everyone waiting at the house with the car all packed.

An hour later, I had a script for a different antibiotic (Augmentin) for 10 days and a week course of Prednisone (the steroid). My family doctor was really great about it and listened to my full story (I see different doctors there, and since I started seeing an ENT almost exclusively more than 3 years ago, none of them really follow my status). Everything that he questioned me about has already been explored, which confirmed to us that, as we believed we had, we have truly exhausted all of the typical avenues for this illness, to no avail. My perfectly healthy post-surgery sinuses must have been exposed to some irritant or trigger. The mystery is finding out just what that is, and this move is just one piece of that puzzle, a rule-out if you will. A big one, granted, but one that makes sense to make after we have already ruled out everything else that we could control for in our current environment.

So here we are, Day 1 of our 8 days-on-the-road moving adventure (or Day 3 of 10 if we count Monday with the emptying of our house, since we haven't slept there since Sunday night). The expected arrival of our belongings on the moving van is exactly one day today, possibly a day sooner. So, tomorrow we head out of here to the home of another wonderful family in North Carolina, where we will stay for a few days so the kids can catch up, we can relax, and to avoid the holiday traffic on key days this weekend. After that there will be one night with my mom in South Carolina, and then the long 8 hour haul across Florida, where we will be spending the Fourth of July this year in a hotel. We hope to see fireworks over the nearby Cape Coral bridge. What a way to begin our life in this new town!

A Better Day

Today turned itself around a little, beginning with a good friend's phone call first thing in the morning offering (well, stating) that she was coming by with a last-chance-for-a-while traditional coffee and bagels. It was a good visit, although once I sat down on the couch to chat I realized I wasn't going to be very productive today. I simply couldn't move. This was a good realization, though. My mom and in-laws have been telling me to rest, so today I did.

The kids went out with their grandparents in the late morning for lunch, movies, and ice cream! I watched reruns of "The Real Housewives" and didn't move from the couch, as predicted, for a good two hours. My mood was still as low as my energy level, but finally sometime in the mid afternoon my right nostril began to clear a bit and I had the energy to get a little packing and laundry done. Sweet relief came in the form of a musty old smell in my nose, a true indicator of my sense of smell slowly returning, gross as it is in the beginning.

I am still achy in my face and tired all over, and of course super stuffy, but the duct-tape and cotton ball sensation has subsided. Friendship, rest, lots of water, and a little bit of quiet seemed to have been just what I needed to get past the worst symptoms, so I can make it through another day on this ever-bumpy road to healing.

Symptoms

I have been avoiding writing a new post for two reasons. First of all, I have way too much to do every day. My daily to-do list fills a full sheet of paper, and that does not include any of my every-day child and home responsibilities. All of the packing, phone calls, and taking care of kids and hubby leaves almost no time to sit down and write or do anything for myself. The second reason, which is more likely the cause, is that I have not been feeling well for the past several days or more.

Last Wednesday at my appointment I informed my favorite doctor of the presence of a small amount of discolored mucus, but he confidently stated that I did not have a sinus infection. Over the weekend, I started to feel more tired than usual. By Monday of this week, the amount of mucus reached serious levels (especially upon waking) and I also have the body aches that usually accompany my infections. At this point, the aches only start later in the afternoon, so I am able to do my day pretty much as normal, until well after lunch when I lose all energy and feel as if I am suddenly wearing a weighted vest.

Jon and I have discussed the various "whys" and "hows" of why I might be coming down with another infection, when my sinuses were just refreshed and healthy as any other person's. There really is nothing specific to point to, as has often been the case over the past several years. Stress, of course, is always a factor. What could be more stressful than moving? Annaliese just overcame a cold, which is another thing that often correlates with me feeling sick (except that this time I don't have any of her cold symptoms). The weather has been dramatically up and down recently, which could be another factor. We went from the upper 90s last week with high humidity to pleasant 70s and dampness this week. Since we aren't sure if there could be a connection, Jon is looking into doing some data-mining of weather patterns to correlate with my health journal entries over the past few years. Perhaps he's onto something.

Meanwhile, I am debating about calling my doctor. I actually tried yesterday, but had to hang up after 20 minutes on hold. I just can't afford that type of usage on my 240 minutes per month (plus free nights and weekends!) cell phone plan. I meant to call later from the home phone (first call was made while at the library hanging out with the kids, feeling the aches come on hard), but completely forgot in the hustle and bustle of the late afternoon. Today I might call, but it is always a debate for me, since I don't really want to hear what he'll have to say: more antibiotics, maybe even steroids, and possibly another half-day excursion to his office.

For now I am going to keep drinking my water and tea, resting when I can, rinsing, and of course continuing all those vitamin and nutritional supplements that just might help my immune system do its job. It is also the perfect time for me to slow down on the work, as it is nearly finished anyway, and enjoy my three amazing kids who are all finally home with me for the summer. Two days into vacation, and they are actually getting along better than when they were in school! Which is a bonus for me, and proof that prayer does actually work!

The Countdown Is On

The clock is ticking for our big move!  In just three weeks, most of our possessions will have been loaded onto an Allied moving truck for its 1,100 mile journey to Cape Coral.  In exactly four weeks from today, we will be sitting in the real estate office signing our lease and being handed the keys to our beautiful new home.  First order of business: a dip in the pool overlooking the freshwater canal.  While our stuff makes its way over the long holiday weekend, we have plans to meander our way South while visiting friends and family in Maryland, North Carolina, and South Carolina before moving in on July 5th.  The adventure begins!

Meanwhile, I have had no time to write because of all of the effort that went into developing the plans mentioned above.  It turns out I have a knack for business negotiations (not that I see a future career in anything business-related).  Although it was time-consuming and stressful, I was pleased when, in the end, I was able to secure a moving company to load and haul all of our stuff for nearly $1,000 under our total moving budget.  Which means we just might be able to add in a little fun on our week-long road trip to Florida.  We are considering a one day stop in the land of magical dreams come true... aka Disney.  However it will be the Fourth of July, and I'm not sure that after four or five days on the road any of us will be up for the crowds and craziness.  But then again, what a great way to begin our adventure!  We'll see... I still have a few weeks to figure out that one!

I have had a lot of people ask how I've been feeling lately, especially dealing with all of the stress that moving involves.  The answer is simply, "OK."  I don't *think* I have a sinus infection, but I see my doctor tomorrow for  my final follow-up and he will tell me for sure.  I have been more stuffy over the past 7 days, and have been experiencing pain in my nose when I talk too much or am exposed to too much noise (hello, every day in a house filled with three kids!).  Unfortunately, I am not breathing as clearly as I would like, and my sense of smell is once again diminished.  I smell more than I did before surgery, but I am resigned to the fact that I will never have that full spectrum of smell that most people enjoy.  I am not as exhausted as I usually am, but I also don't feel as energetic as I would like to be.  I am trying to eat "super clean"  as one of my friend's would say, and to get a reasonable amount of exercise and sleep to manage the stress.  Lots of water, vitamins, pro-biotics, and twice-daily rinses are also part of my health regime.

Overall I do expect that I am on my way to better health, but I don't feel like I am quite where I'd like to be.  Hopefully that will change in a few weeks when my year-long vacation and early retirement officially begins!

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.