Over the past few weeks my sinus symptoms have been gradually worsening to the point that, after waking up throughout the night Thursday in pain, I woke up Friday morning informing Jon that it was time to see a doctor. Miraculously, I was able to get a same-day appointment with a local ENT, and even more miraculously, I was also able to have all of my records sent from Pennsylvania Hospital, no small feat. All of this was accomplished by 9:30 AM.
Well the ENT visit was interesting. It proves why it's helpful to get 2nd (and 3rd, and 4th as the case may be...) opinions. This new doc attributed my problems to a condition I was diagnosed with a couple of years ago, but which my previous doctors did not give much importance to (other than telling me not to take aspirin or advil, since it did cause a severe asthma attack more than once), which is called Samter's Triad. It is an inflammatory condition associated with asthma, aspirin-sensitivity, and nasal polyps.
At the visit Friday, the endoscopy of my nasal passages showed polyps, which had been removed during the surgery in May. More proof that I have the condition and that it is probably the driving force behind my needing repeat surgeries and a lack of improvement all around. After doing lots of online research this weekend, we have found that there are plenty of studies demonstrating that individuals with Samter's Triad are more likely (one study cited 10 times more likely) than those without it to have repeat Endoscopic Sinus Surgery. So, at least this is an answer to the "Why" question, even though it doesn't give much cause for hope that the future will be much different. The doc said some people find it goes away in their 50s or 60s, then he asked how old I was, and when I said "33" gave me a pitying look insinuating that I had a long way to go... great!
In the meantime (is that the right word to use when you are referring to twenty or thirty years...?) anecdotal evidence suggests some people with Samter's are having a little improvement while following a special diet, such as the Feingold diet, which limits salicyclates found naturally in plants and in food additives, which can act similar to aspirin and trigger worsening of symptoms. So, I am about to start writing a grocery list using the "approved" foods, and trying to figure out what I can eat! While there is a lot to choose from, unfortunately many of our favorite foods are on the "bad" list, such as tomatoes, apples, grapes, and anything processed (not that we eat a lot of processed food, but it does limit the variety you can enjoy).
Another treatment that is being met with some success, according to Wikipedia, is "desensitization" to aspirin, with some improvement in chronic sinusitis symptoms We will look into that also.
Sunday, November 6, 2011
Wednesday, October 5, 2011
There hasn't been much to write about these past few weeks. Ever since I wrote about my "cautious optimism" my symptoms have continued to be up and down, which makes it difficult to give any kind of summary. When asked, I am telling people that overall I am feeling much better, which is true. Most noticeable has been an almost absence of the achy fatigue that was so prominent for the past several months.
I do, however, know that it isn't gone forever. It reared itself back up again yesterday after a good week and a half of activity above my normal very low level. Lots of unusual events these past two weeks (business trips, birthdays, colds in the family) have required me to step up my efforts around the house and with the kids, which is starting to take its toll on my body. Today I took a brief catnap in the afternoon but am still needing a cup of coffee right now to help me get through the rest of the day. And it's only Wednesday! Hopefully things will be back to normal soon, and I can rest up enough to get back to my normal level of energy.
It sure was feeling good to be fatigue-free and almost feeling like my old self, energy-wise. It is just unfortunate that I can't sustain it for long. Once again, this little episode proves that a low-key lifestyle is necessary for me to maintain equilibrium. And even with that, I am not 100% healthy. I am still fighting an infection that started in June and with asthma and allergies which appear without rhyme or reason. Saturday I go back for my every-three-weeks peptide injection, which should now be tailored more toward those upper respiratory symptoms since the fatigue is less intense.
I can't say I am looking forward to it, especially since the last time I almost fainted (!), but it will be a good chance to see whether or not I feel any immediate improvement afterwards. Plus, a visit to the doctor's office gets us out of our neighborhood and significantly closer to the beach, which we plan to take advantage of this weekend!
I do, however, know that it isn't gone forever. It reared itself back up again yesterday after a good week and a half of activity above my normal very low level. Lots of unusual events these past two weeks (business trips, birthdays, colds in the family) have required me to step up my efforts around the house and with the kids, which is starting to take its toll on my body. Today I took a brief catnap in the afternoon but am still needing a cup of coffee right now to help me get through the rest of the day. And it's only Wednesday! Hopefully things will be back to normal soon, and I can rest up enough to get back to my normal level of energy.
It sure was feeling good to be fatigue-free and almost feeling like my old self, energy-wise. It is just unfortunate that I can't sustain it for long. Once again, this little episode proves that a low-key lifestyle is necessary for me to maintain equilibrium. And even with that, I am not 100% healthy. I am still fighting an infection that started in June and with asthma and allergies which appear without rhyme or reason. Saturday I go back for my every-three-weeks peptide injection, which should now be tailored more toward those upper respiratory symptoms since the fatigue is less intense.
I can't say I am looking forward to it, especially since the last time I almost fainted (!), but it will be a good chance to see whether or not I feel any immediate improvement afterwards. Plus, a visit to the doctor's office gets us out of our neighborhood and significantly closer to the beach, which we plan to take advantage of this weekend!
Tuesday, August 30, 2011
Anniversaries
A couple of weeks ago Jon and I had our 12 year wedding anniversary, on August 7th. We didn't do anything special this year, since, of course, I wasn't feeling well! Two years ago we really celebrated by taking an amazing "second honeymoon" trip back to Aruba, where we had spent our honeymoon. It was amazing, even though I was, even then, sick! Luckily the trip fell during a time when I wasn't as bad as I had been (in the past I was virtually symptom-free during the summertime, but I was still on tons of meds).
Another anniversary that I am marking (although decidedly NOT celebrating!) is that of the beginning of this illness. Four years ago, on our wedding anniversary, I reacted violently to the beautiful bouquet of roses I was given. That was the beginning, and it just got worse from there. I had never been allergic to anything before, so it was a weird event that we attributed to my being pregnant. A month or so later, another severe reaction to cigarette smoke, and my sinuses filled with fluid and intense pain and pressure that did not subside until over a year later when I had my first sinus surgery.
The truly strange thing about this four-year anniversary is that it surpasses the age of my youngest child, which means I have been sick for her entire life! And for my older kids, ages 6 and almost 8, it's been more than half of their lives as well! Four years ago, no one would have imagined I would still be struggling with sinus issues and chronic fatigue. It's just sinus issues! It's just fatigue! How could that be so devastating? Well, it is. Our life is on hold this year as we are finally doing something to interrupt the vicious cycle I have been in. So far, it is too soon to tell if anything is working for the long-term. If it does, then I will start celebrating THAT anniversary! But, skip the flowers (just in case!).
Another anniversary that I am marking (although decidedly NOT celebrating!) is that of the beginning of this illness. Four years ago, on our wedding anniversary, I reacted violently to the beautiful bouquet of roses I was given. That was the beginning, and it just got worse from there. I had never been allergic to anything before, so it was a weird event that we attributed to my being pregnant. A month or so later, another severe reaction to cigarette smoke, and my sinuses filled with fluid and intense pain and pressure that did not subside until over a year later when I had my first sinus surgery.
The truly strange thing about this four-year anniversary is that it surpasses the age of my youngest child, which means I have been sick for her entire life! And for my older kids, ages 6 and almost 8, it's been more than half of their lives as well! Four years ago, no one would have imagined I would still be struggling with sinus issues and chronic fatigue. It's just sinus issues! It's just fatigue! How could that be so devastating? Well, it is. Our life is on hold this year as we are finally doing something to interrupt the vicious cycle I have been in. So far, it is too soon to tell if anything is working for the long-term. If it does, then I will start celebrating THAT anniversary! But, skip the flowers (just in case!).
Monday, August 22, 2011
Cautious Optimism
Today is the first day in weeks that I have felt like writing. It is a beautiful day here despite the threat of a hurricane by weeks' end. The sun is shining, and so is my heart: it has been five days now since I last had symptoms of any kind!
I can't even believe I am writing that! The statement begs for more hope and optimism than I am willing to dole out just yet, since the weeks leading up to this reprieve have been so horrible. But still, I am both hopeful and optimistic that things might be starting to turn around for me.
Nine days ago I underwent the first of a series of almost-monthly peptide injections aimed at repairing my broken immune system, which I now believe is the most likely cause of my recurrent sinus infections. My new doctor is treating me for Chronic Fatigue Immune Deficiency Syndrom (CFIDS, for short), as well as Chronic Sinusitis and Asthma. The website cfids.org has some great information for more on this condition. Here is a quick overview:
The local doctor I am working with is one of only a handful in the US performing this rather cutting-edge treatment for autoimmune and immune dysfunction diseases such as Fibromyalgia, Chronic Fatigue Syndrome, Asthma, and others. It is amazing to us that we even found him: his ad in the yellow pages was located below that of a typical ENT/Allergist, and it stated: "We treat the cause, not the symptoms." THAT got my attention!
The treatment I have been receiving for four years (yes, we have now passed the four-year anniversary of the onset of my initial symptoms-- wow!) has been doing just that, to little or no avail. It was time for something new. Granted, I didn't expect to have to seek care in Florida at all. I thought, having just had sinus surgery and it being summertime, my most healthy season, I would be all set, at least for a few months. But that has not been the case. This past month has been perhaps the most painful of my life. The achy flu-like fatigue, headaches, and sinus pressure were nearly unbearable at times. Until just five days ago, I had to take one or two Extra-strength Tylenol every day by about 4 PM or I could not make it through the bustling after-school, dinner, and bedtime hours.
Now, for five days, I have had no pain, no pressure, and feel my energy is back to at least 90% of my normal energy/functioning level. Typically when I am "feeling good," my energy baseline is at 70% of my "normal" with occasional increases coinciding with a strong dose of oral steroids and/or Sudafed. This time, I am happy to say, it is all-natural. I have even been able to go walking on a daily basis, without any consequences! This feels fantastic.
So, as I labeled the title, I am now cautiously optimistic that I am on the road to recovery, Lord-willingly, once and for all. I am taking one day at a time, however, and will continue to keep my activity level low and my state of mind calm and relaxed. Thank goodness for my husband, who has stepped up tremendously in helping me in so many ways, any time I feel I need to stop and rest. He encourages and supports my newfound ability to relax (aka be lazy!) which for the first time in my life I am actually enjoying!
I can't even believe I am writing that! The statement begs for more hope and optimism than I am willing to dole out just yet, since the weeks leading up to this reprieve have been so horrible. But still, I am both hopeful and optimistic that things might be starting to turn around for me.
Nine days ago I underwent the first of a series of almost-monthly peptide injections aimed at repairing my broken immune system, which I now believe is the most likely cause of my recurrent sinus infections. My new doctor is treating me for Chronic Fatigue Immune Deficiency Syndrom (CFIDS, for short), as well as Chronic Sinusitis and Asthma. The website cfids.org has some great information for more on this condition. Here is a quick overview:
Almost everyone experiences fatigue from time to time. But for at least one million U.S. adults, teens and children, the fatigue is crushing, unrelieved by rest and accompanied by a constellation of other punishing symptoms. They suffer from chronic fatigue syndrome or CFS, also known as chronic fatigue and immune dysfunction syndrome (or CFIDS). Its symptoms are debilitating enough to destroy good health and active lifestyles, end fulfilling careers and devastate families.
More people suffer from CFS than MS, lung cancer or AIDS. Yet 80% have not been diagnosed by a medical provider.
The local doctor I am working with is one of only a handful in the US performing this rather cutting-edge treatment for autoimmune and immune dysfunction diseases such as Fibromyalgia, Chronic Fatigue Syndrome, Asthma, and others. It is amazing to us that we even found him: his ad in the yellow pages was located below that of a typical ENT/Allergist, and it stated: "We treat the cause, not the symptoms." THAT got my attention!
The treatment I have been receiving for four years (yes, we have now passed the four-year anniversary of the onset of my initial symptoms-- wow!) has been doing just that, to little or no avail. It was time for something new. Granted, I didn't expect to have to seek care in Florida at all. I thought, having just had sinus surgery and it being summertime, my most healthy season, I would be all set, at least for a few months. But that has not been the case. This past month has been perhaps the most painful of my life. The achy flu-like fatigue, headaches, and sinus pressure were nearly unbearable at times. Until just five days ago, I had to take one or two Extra-strength Tylenol every day by about 4 PM or I could not make it through the bustling after-school, dinner, and bedtime hours.
Now, for five days, I have had no pain, no pressure, and feel my energy is back to at least 90% of my normal energy/functioning level. Typically when I am "feeling good," my energy baseline is at 70% of my "normal" with occasional increases coinciding with a strong dose of oral steroids and/or Sudafed. This time, I am happy to say, it is all-natural. I have even been able to go walking on a daily basis, without any consequences! This feels fantastic.
So, as I labeled the title, I am now cautiously optimistic that I am on the road to recovery, Lord-willingly, once and for all. I am taking one day at a time, however, and will continue to keep my activity level low and my state of mind calm and relaxed. Thank goodness for my husband, who has stepped up tremendously in helping me in so many ways, any time I feel I need to stop and rest. He encourages and supports my newfound ability to relax (aka be lazy!) which for the first time in my life I am actually enjoying!
Thursday, August 4, 2011
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.
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.
Friday, July 29, 2011
Fatigued & Confused
For the second time this month, I have had a recurrence of symptoms that I am beginning to see as correlated with, but not directly related to, my chronic sinusitis.
A few days ago, at the tail end of a fun-filled visit with my husband's parents, I began to experience once again the achiness and fatigue that I have always associated with a flare-up of acute sinusitis. This time, however, there were no other symptoms to suggest that my daily experience of low-level illness ("feeling sick") had worsened into another acute sinusitis episode. In other words, sinus-wise, everything was the same, but my body hit a wall.
The same thing had happened a week earlier, a few days after my mom had visited. According to her, I was feeling worse because of "overdoing it" (she had seen me in action, she reminded me). It is true that while she was here, I was in constant motion unpacking and getting the house in order, shopping and cooking for everyone, and generally just being my go-getter self, wanting to take advantage of the extra set of hands in the house. I even managed to fit in a long run while she was here, the first in several weeks, and a fairly intense core workout. Apparently, I overdid it. A few days of rest and I was back to baseline by the time the next set of grandparents arrived. I felt fine throughout their visit, but somehow I must have overdone it again, even though I had made an effort to relax whenever possible, and only at the end did I do some racing around as I tried to maximize my time to get school shopping done.
When I woke up on Wednesday morning I knew I hadn't slept well. It had taken me a while to fall asleep, which I attributed to taking Afrin later in the day to help with congestion, and so I woke with a headache and without a feeling of well being. By the afternoon, all of my energy was gone. When I get like that, it is to the point that I can hardly smile or respond to a question. I am just wiped out, blank-faced and exhausted. After we said our goodbyes, I took a catnap on the couch while the kids watched TV. It wasn't enough. A little while later, I asked Jon if I could lay down while he finished up his workday. An hour and half later, I felt a little improved, but I was still so tired that I needed to go to sleep at 9:30, even though I had just slept from 4 to 5:30.
This fatigue has stayed with me through today. I have had to nap and rest throughout each day, and when I do move around the house, I feel like I am running a 5K. I slump into a chair afterward, exhausted. I have had to take multiple doses of extra-strength Tylenol for the dull headache that started last night and continued upon waking and throughout the day today. It is finally gone, so I can think a little more clearly and tolerate the commotion of busy kids a little better.
Next week is our last official week of summer. I hope to live it up with the kids as much as I can. I don't want to rush them off to school, but I am grateful that it will begin soon, since it is now obvious that the next order of business is to figure out the mystery that is my health. I am glad that we are here, in this beautiful place where I believe healing is possible. There are almost no distractions to keep me from my task, other than those I create for myself. Soon, I hope to have a treatment plan that I will follow with the help of my doting husband and a doctor whose philosophies line up with my own. I am ready. I am good to go!
A few days ago, at the tail end of a fun-filled visit with my husband's parents, I began to experience once again the achiness and fatigue that I have always associated with a flare-up of acute sinusitis. This time, however, there were no other symptoms to suggest that my daily experience of low-level illness ("feeling sick") had worsened into another acute sinusitis episode. In other words, sinus-wise, everything was the same, but my body hit a wall.
The same thing had happened a week earlier, a few days after my mom had visited. According to her, I was feeling worse because of "overdoing it" (she had seen me in action, she reminded me). It is true that while she was here, I was in constant motion unpacking and getting the house in order, shopping and cooking for everyone, and generally just being my go-getter self, wanting to take advantage of the extra set of hands in the house. I even managed to fit in a long run while she was here, the first in several weeks, and a fairly intense core workout. Apparently, I overdid it. A few days of rest and I was back to baseline by the time the next set of grandparents arrived. I felt fine throughout their visit, but somehow I must have overdone it again, even though I had made an effort to relax whenever possible, and only at the end did I do some racing around as I tried to maximize my time to get school shopping done.
When I woke up on Wednesday morning I knew I hadn't slept well. It had taken me a while to fall asleep, which I attributed to taking Afrin later in the day to help with congestion, and so I woke with a headache and without a feeling of well being. By the afternoon, all of my energy was gone. When I get like that, it is to the point that I can hardly smile or respond to a question. I am just wiped out, blank-faced and exhausted. After we said our goodbyes, I took a catnap on the couch while the kids watched TV. It wasn't enough. A little while later, I asked Jon if I could lay down while he finished up his workday. An hour and half later, I felt a little improved, but I was still so tired that I needed to go to sleep at 9:30, even though I had just slept from 4 to 5:30.
This fatigue has stayed with me through today. I have had to nap and rest throughout each day, and when I do move around the house, I feel like I am running a 5K. I slump into a chair afterward, exhausted. I have had to take multiple doses of extra-strength Tylenol for the dull headache that started last night and continued upon waking and throughout the day today. It is finally gone, so I can think a little more clearly and tolerate the commotion of busy kids a little better.
Next week is our last official week of summer. I hope to live it up with the kids as much as I can. I don't want to rush them off to school, but I am grateful that it will begin soon, since it is now obvious that the next order of business is to figure out the mystery that is my health. I am glad that we are here, in this beautiful place where I believe healing is possible. There are almost no distractions to keep me from my task, other than those I create for myself. Soon, I hope to have a treatment plan that I will follow with the help of my doting husband and a doctor whose philosophies line up with my own. I am ready. I am good to go!
Wednesday, July 27, 2011
Saltwater Swimming
I have always had a love/hate relationship with swimming. As a kid, my siblings and I would spend our summers in South Carolina with our grandparents, swimming almost every day at either the pool, the beach, or both. Somehow, we never got bored of our routine as we put on our swimsuits and rode our bikes off to the designated swimming spot each day. The only issue was the vote. Where to go, or at least, where to go first. I loved the beach for the sun and the waves, and the excitement of not knowing what it would be like each day. My brother and sister preferred the pool because it was cleaner and closer. For me, the chlorine bothered me enough to make me want to avoid being in it too long. I would wear goggles and, yes, a nose plug, because if water did get up my nose it would make me sneeze uncontrollably.
Later on in high school, it was my brother and sister who became lifeguards, and my sister a swim-team star, while I kept to my running and sitting the sidelines on the soccer team. The pool as a place for exercise never held on for me. Until now.
Our home here in Florida has a saltwater pool. According to wikipedia, Salt water chlorination uses dissolved salt as a store for the chlorine generator instead of directly adding chlorine. Chlorine is still present in the water, but in a lesser amount, so that it does not produce the level of irritation many people experience in a chlorine pool.
My mother was the first person to discover that the pool water was salty. She had been visiting for a few days the week after we arrived. We, of course, had been in the pool many times already, but hadn't been able to pinpoint the difference in the water. Somehow I had forgotten my long-ago sensitivity to chlorine. When my mom got a taste of the water in her mouth, she was in shock that it was saltwater, and that we had no idea. Suddenly, my memory was jostled back to life, and I recalled our real estate agent mentioning the saltwater pool in her description of the property she visited in our absence. It was a minor detail which I must not have written down as I hastily scribbled notes on her impression of this house, just minutes before agreeing, over the phone, to rent it for the year.
Ever since Mom's visit she has been telling me over the phone that I should take advantage of the saltwater pool. Her mom, my Nana, along with every other grandma out there, had always touted the health benefits of salt or ocean water for your skin, hair, sores, etc. My mother-in-law's mother says the same thing about going to the Jersey shore. "Breathe deep," she always says, "it will make whatever ails you go away." Somehow, I don't think it works as perfectly as either grandma likes to think, but research has shown them to be on the right track. Livestrong.com has several articles explaining the health benefits of swimming in seawater for the immune system, skin problems, as well as bronchitis and other respiratory issues. Lance Armstrong's team is advocating a nice, long swim in the ocean, which perhaps I will work up to, but for now, I am going to take advantage of the saltwater pool right outside my patio door.
According to another website, planetgreen.com, having a saltwater pool is an eco-friendly option as well as a healthy one. This article talks more about how a saltwater pool works and its positive health and environmental benefits.
I never would have expected that having a pool would somehow play a role in my healing, but I am willing to entertain the idea right now. It has been three weeks since we've moved in here, and more than a month since leaving Pennsylvania with my last prescription for antibiotics, and I still cannot wake up without having to expectorate. I am diligently doing my nasal rinsing with the steroid add-in, using Sudafed or Afrin occasionally to assist with the clearing, and taking my vitamins and supplements, while also trying to rest and relax as much as possible. These things are helping to keep me stable, but so far, I have not been cured.
The other day while the kids were watching TV after several hours in the pool, I decided to get some exercise. This would normally be the time of day, back home, when I would lace up my sneakers and go for a run outside or on the treadmill, if Jon said he could keep an eye on the kids. Here, it's too hot to run outside other than first thing in the morning or later in the evening. Instead, I thought about my mom's advice (and her doctor's, as well; she walks regularly with her primary care doctor, who heard about our pool and agreed that it would be good for me to get in it as much as possible). I put on my goggles and hopped in the pool, sans nose plug.
I set out to do 5 laps of each of my strokes: freestyle, back stroke, and breast stroke. It took several sets of this circuit to get my breathing regulated, especially on the freestyle, which has always been my struggle. In the past, I would gag down so much air during the breathing that I would need to burp at the end of the lap! This time, I worked hard to use my nose as well as my mouth to inhale, and to slow down my breathing so that I didn't need to come up for air as much. After thirty minutes of this exercise, I felt great. It felt like a run, only better. My whole body had been worked, including my nose. See, I can run by just mouth-breathing. If I do that while swimming, I end up drinking the water. Swimming forced me to bring air through my nose, which those airways desperately need for recovery.
So I will now be adding swimming to my personal (self-prescribed) list of physical therapy activities. I will try to swim laps three times a week, and run just once, maybe twice. I am not quite ready to give up the feel of my sneakers on pavement, but I already see just how much more beneficial the swimming is to my respiratory system. I may even try it in the ocean one of these days. Close to shore, of course.
Later on in high school, it was my brother and sister who became lifeguards, and my sister a swim-team star, while I kept to my running and sitting the sidelines on the soccer team. The pool as a place for exercise never held on for me. Until now.
Our home here in Florida has a saltwater pool. According to wikipedia, Salt water chlorination uses dissolved salt as a store for the chlorine generator instead of directly adding chlorine. Chlorine is still present in the water, but in a lesser amount, so that it does not produce the level of irritation many people experience in a chlorine pool.
My mother was the first person to discover that the pool water was salty. She had been visiting for a few days the week after we arrived. We, of course, had been in the pool many times already, but hadn't been able to pinpoint the difference in the water. Somehow I had forgotten my long-ago sensitivity to chlorine. When my mom got a taste of the water in her mouth, she was in shock that it was saltwater, and that we had no idea. Suddenly, my memory was jostled back to life, and I recalled our real estate agent mentioning the saltwater pool in her description of the property she visited in our absence. It was a minor detail which I must not have written down as I hastily scribbled notes on her impression of this house, just minutes before agreeing, over the phone, to rent it for the year.
Ever since Mom's visit she has been telling me over the phone that I should take advantage of the saltwater pool. Her mom, my Nana, along with every other grandma out there, had always touted the health benefits of salt or ocean water for your skin, hair, sores, etc. My mother-in-law's mother says the same thing about going to the Jersey shore. "Breathe deep," she always says, "it will make whatever ails you go away." Somehow, I don't think it works as perfectly as either grandma likes to think, but research has shown them to be on the right track. Livestrong.com has several articles explaining the health benefits of swimming in seawater for the immune system, skin problems, as well as bronchitis and other respiratory issues. Lance Armstrong's team is advocating a nice, long swim in the ocean, which perhaps I will work up to, but for now, I am going to take advantage of the saltwater pool right outside my patio door.
According to another website, planetgreen.com, having a saltwater pool is an eco-friendly option as well as a healthy one. This article talks more about how a saltwater pool works and its positive health and environmental benefits.
I never would have expected that having a pool would somehow play a role in my healing, but I am willing to entertain the idea right now. It has been three weeks since we've moved in here, and more than a month since leaving Pennsylvania with my last prescription for antibiotics, and I still cannot wake up without having to expectorate. I am diligently doing my nasal rinsing with the steroid add-in, using Sudafed or Afrin occasionally to assist with the clearing, and taking my vitamins and supplements, while also trying to rest and relax as much as possible. These things are helping to keep me stable, but so far, I have not been cured.
The other day while the kids were watching TV after several hours in the pool, I decided to get some exercise. This would normally be the time of day, back home, when I would lace up my sneakers and go for a run outside or on the treadmill, if Jon said he could keep an eye on the kids. Here, it's too hot to run outside other than first thing in the morning or later in the evening. Instead, I thought about my mom's advice (and her doctor's, as well; she walks regularly with her primary care doctor, who heard about our pool and agreed that it would be good for me to get in it as much as possible). I put on my goggles and hopped in the pool, sans nose plug.
I set out to do 5 laps of each of my strokes: freestyle, back stroke, and breast stroke. It took several sets of this circuit to get my breathing regulated, especially on the freestyle, which has always been my struggle. In the past, I would gag down so much air during the breathing that I would need to burp at the end of the lap! This time, I worked hard to use my nose as well as my mouth to inhale, and to slow down my breathing so that I didn't need to come up for air as much. After thirty minutes of this exercise, I felt great. It felt like a run, only better. My whole body had been worked, including my nose. See, I can run by just mouth-breathing. If I do that while swimming, I end up drinking the water. Swimming forced me to bring air through my nose, which those airways desperately need for recovery.
So I will now be adding swimming to my personal (self-prescribed) list of physical therapy activities. I will try to swim laps three times a week, and run just once, maybe twice. I am not quite ready to give up the feel of my sneakers on pavement, but I already see just how much more beneficial the swimming is to my respiratory system. I may even try it in the ocean one of these days. Close to shore, of course.
Wednesday, July 20, 2011
Birdwatching
The other day Jon and I were discussing potential hobbies or interests we should pursue now that we are here in Florida, more or less on a yearlong (or more) vacation. Actually, the list is quite long, and includes cycling (Jon only, this has never interested me), fishing, kayaking, and, perhaps surprisingly, birdwatching.
Now as recently as a week ago, I would have scoffed at the idea of pursuing birdwatching, more properly known as "birding," as a hobby. In fact, when it first appeared on our list of ideas, it was as a joke. This area of Florida is known for its wide array of birds and even draws tourists throughout the year for whom the birds, and not the beaches, are the focus of their vacation. To us this has always seemed rather, well, nerdy. Picture gray-haired ladies and gents with giant hats, pants with lots of pockets to hold an assortment of binoculars, cameras, and other birding "gear."
Just a few days ago our view of this hobby has suddenly changed. It happened during a rainstorm on Sunday afternoon. From the family room, Jon caught a glimpse through the sliding glass door of a giant bird landing directly in our backyard, between the edge of our screened lanai and the canal seawall. I snapped a picture as we all gazed in amazement at this beautiful creature we had never seen in real life, much less this close. After it flew away, I looked it up on the internet and believe it to be a Great Blue Heron. This, I guess, was the beginning of birding becoming an actual contender for our time and interest this year.
Today, while swimming in the pool with the kids, we observed several more unique species, all within plain view. One, his landing directly in the spot where the Great Blue Heron stood a few days ago, prompted me to have Emma grab Jon from his office to come and see. This time I did not have the camera handy (I am not yet a true birdwatcher, apparently), but I did some quick research and believe this was a Great Heron. He or she was tall, with a great long curved neck and a pointy orange beak. He just stood by the canal's edge for a few minutes, then gracefully flew to the water below. It flew away only when Jon approached the dock for a closer look.
Although the sightings of these two magnificent birds is fairly rare for us, each being spotted only once in the two weeks we have been here, others are commonly seen every day. At least one Red-winged Blackbird lives in our yard, regularly singing his distinctive song to a friend or mate down the way, who always answers in echo. A lone morning dove, one bird species we used to see regularly back in Pennsylvania, landed on the roof of our lanai during our swim today as well, moving delicately along the edge, watching us. Two large white birds with black-tipped wings were perched in a tall needley tree across the canal from us, swaying in the wind on their branches for quite some time as I floated on my raft near the kids. And, as I write, birds all around are chirping and singing, while a tiny lizard hangs out on a screen nearby, where he has been stationed for most of the afternoon.
Perhaps there might just be something to this bird-watching thing after all. It's a stroke of luck that we already own a decent pair of binoculars, a gift we selected from among several others Jon's company offered in honor of his five year anniversary a few years back. Though chances are you won't find us in baggy pants or big hats, we will, most likely, be snapping pictures whenever we can in order to document these everyday Florida, amazing-to-us, discoveries.
Now as recently as a week ago, I would have scoffed at the idea of pursuing birdwatching, more properly known as "birding," as a hobby. In fact, when it first appeared on our list of ideas, it was as a joke. This area of Florida is known for its wide array of birds and even draws tourists throughout the year for whom the birds, and not the beaches, are the focus of their vacation. To us this has always seemed rather, well, nerdy. Picture gray-haired ladies and gents with giant hats, pants with lots of pockets to hold an assortment of binoculars, cameras, and other birding "gear."
Just a few days ago our view of this hobby has suddenly changed. It happened during a rainstorm on Sunday afternoon. From the family room, Jon caught a glimpse through the sliding glass door of a giant bird landing directly in our backyard, between the edge of our screened lanai and the canal seawall. I snapped a picture as we all gazed in amazement at this beautiful creature we had never seen in real life, much less this close. After it flew away, I looked it up on the internet and believe it to be a Great Blue Heron. This, I guess, was the beginning of birding becoming an actual contender for our time and interest this year.
Today, while swimming in the pool with the kids, we observed several more unique species, all within plain view. One, his landing directly in the spot where the Great Blue Heron stood a few days ago, prompted me to have Emma grab Jon from his office to come and see. This time I did not have the camera handy (I am not yet a true birdwatcher, apparently), but I did some quick research and believe this was a Great Heron. He or she was tall, with a great long curved neck and a pointy orange beak. He just stood by the canal's edge for a few minutes, then gracefully flew to the water below. It flew away only when Jon approached the dock for a closer look.
Although the sightings of these two magnificent birds is fairly rare for us, each being spotted only once in the two weeks we have been here, others are commonly seen every day. At least one Red-winged Blackbird lives in our yard, regularly singing his distinctive song to a friend or mate down the way, who always answers in echo. A lone morning dove, one bird species we used to see regularly back in Pennsylvania, landed on the roof of our lanai during our swim today as well, moving delicately along the edge, watching us. Two large white birds with black-tipped wings were perched in a tall needley tree across the canal from us, swaying in the wind on their branches for quite some time as I floated on my raft near the kids. And, as I write, birds all around are chirping and singing, while a tiny lizard hangs out on a screen nearby, where he has been stationed for most of the afternoon.
Perhaps there might just be something to this bird-watching thing after all. It's a stroke of luck that we already own a decent pair of binoculars, a gift we selected from among several others Jon's company offered in honor of his five year anniversary a few years back. Though chances are you won't find us in baggy pants or big hats, we will, most likely, be snapping pictures whenever we can in order to document these everyday Florida, amazing-to-us, discoveries.
Saturday, July 9, 2011
Finally!
I am finally writing from our new home in Southwest Florida. It is beautiful here! Tonight after putting the kids to bed Jon and I watched the sunset from our front porch, pink and orange over a huge sky. We talked about how I have been feeling, and how amazing it is that we are actually here.
When we first rolled into town at the end of the longest drive of our journey, Cape Coral was deserted due to the Fourth of July holiday. No stores were open, and everything looked bleak and dreary, as a huge thunderstorm had just blown through (which added time to our trip, right at the end when we had all hit our limit of car-time!). Without saying a word, Jon & I knew what each other was thinking: "What on earth have we gotten ourselves into?". We had only visited this town once, for ONE day, during a three-day whirlwind tour of the area. We had never seen our home in person, but simply put our faith in the realtor I had found online, and trusted. We had some idea of the neighborhood in general, but not the specific street or area right around this home. We literally arrived here on faith.
Knowing what he was thinking, because it was the same as me, I told Jon, "Just don't think about it. Don't think about anything. Just get to the hotel, and we will see what happens tomorrow." I knew our emotions were not to be trusted. We had not slept in our own beds or our own home in 9 days. Even though it was fun to see friends and family, we were worn out from so many days of living out of suitcases and being in the car. That day in particular was the worst of all. We had woken at 5:45 AM in order to leave by 8, and didn't arrive in town until almost 6 PM. The hotel experience was less than ideal, only because it had two queen size beds and there were five of us, but we survived. The next morning we once again woke up before 6 so we could have breakfast and be at the rental office by 8 for the keys. By then, the sun was out and it was gorgeous. The town was alive again, and it was as beautiful as our favorite Caribbean island, Aruba.
Our entire family was filled with nervous excitement as we drove to our new home and finally unlocked the doors. It was better than we could have imagined! Beautiful, new, and clean, with rooms the perfect size for us, and giant closets for all the toys from our previously huge playroom (which we don't have here), this house has everything I could have ever wanted, and more. It is not a mansion by any stretch, nor is it total luxury, but it has a lot of high-quality features that seem to make life easier and more pleasant. There is something wonderful about a master bathroom with a giant soaking tub and a toilet with a door. Hello, relaxation! In choosing to live in Florida, one thing we considered a must was a swimming pool. For years in Pennsylvania we had been members of our community YMCA pool, and though we always had a blast there, for me, taking three children alone was more work than it was worth, and thus we didn't use it as much as we would have liked. Here, it is right out our back door, and we have the bonus feature of total privacy, since there are no neighbors next door and the canal behind us provides a generous buffer between us and the street behind. The view is truly incredible as well. There seems to always be a breeze: again, just like Aruba! When I am out there, I breathe as deeply as possible (which is still a little tricky on that pesky right side), and soak it all in.
Symptom-wise, yesterday was the first day I truly began to feel good again. It was also the final day of my SECOND round of antibiotics. 20 days in total, going back to mid-June. Finally, the signs of infection are all but gone, and I am breathing almost normally again. There is a slight sensation of swelling or congestion on the right side, but air is flowing, which feels fantastic. I am continuing with the strictest regiment of twice daily rinses with one pulmicort (steroid) rinse, two nasal sprays, twice a day (an antihistimine and a steroid), and Zyrtec. I am also continuing to take my supplements and vitamins, to which I recently added Calcium at the suggestion of the doctor friend we had stayed with in North Carolina. Apparently, prednisone gets in the way of calcium absorption, something which would have been helpful to know a long time ago, especially considering my age and gender. At least I know now, and am going to step up my calcium to try to make up for it.
Physically I am finally over the feeling of total exhaustion that has been with me for weeks. Unlike with past infections, when I would feel this way for no apparent reason, this time it was pretty clear that I was tired because of the physical labor involved in moving. Also, when I take prednisone I don't sleep as deeply, so probably this contributed as well. Yesterday I slept in until 8:30 for the first time in forever, and it felt great! Now I feel like I am almost back to my normal self, rested and just about over this infection (but not quite there yet).
Despite the boxes to unpack, things around the house have been mostly calm and quiet. The children are in heaven with the swimming pool out back, and they are highly motivated to get along, clean up, or eat all of their food if a chance to go swimming is the reward. Having a one-floor home seems to contribute to cooperation and happiness as well. While I am in the kitchen or laundry room, they are playing in one of their bedrooms just a few feet away. Somehow, it makes things easier and everyone has been super happy.
Now that we are getting settled, we have entered a small stage of having visitors, beginning with my mom's arrival from South Carolina. We are so happy to have her here! It is fun to finally have someone to share our joy with, as we can hardly contain it! In two weeks, Jon's parents will come as well! God has been so faithful to us so far, and we have no doubt that He will continue to provide for all of our needs, including my health and restoration as each day I feel better and better! We are incredibly thankful for all of the friends and family out there who have been praying for us. Keep it up-- it is working! I hope to continue to be able to post positive updates on this blog.
Tomorrow we are taking our first excursion over to Sanibel Island, which we visited back in April. It is one of the most gorgeous natural settings we've ever visited! Mom has never been there, so it will be fun to explore it some more with her, and to relax and let the kids play in the sun and sand for as long we we care to stay. After all, it will only be a thirty minute ride back home again!
When we first rolled into town at the end of the longest drive of our journey, Cape Coral was deserted due to the Fourth of July holiday. No stores were open, and everything looked bleak and dreary, as a huge thunderstorm had just blown through (which added time to our trip, right at the end when we had all hit our limit of car-time!). Without saying a word, Jon & I knew what each other was thinking: "What on earth have we gotten ourselves into?". We had only visited this town once, for ONE day, during a three-day whirlwind tour of the area. We had never seen our home in person, but simply put our faith in the realtor I had found online, and trusted. We had some idea of the neighborhood in general, but not the specific street or area right around this home. We literally arrived here on faith.
Knowing what he was thinking, because it was the same as me, I told Jon, "Just don't think about it. Don't think about anything. Just get to the hotel, and we will see what happens tomorrow." I knew our emotions were not to be trusted. We had not slept in our own beds or our own home in 9 days. Even though it was fun to see friends and family, we were worn out from so many days of living out of suitcases and being in the car. That day in particular was the worst of all. We had woken at 5:45 AM in order to leave by 8, and didn't arrive in town until almost 6 PM. The hotel experience was less than ideal, only because it had two queen size beds and there were five of us, but we survived. The next morning we once again woke up before 6 so we could have breakfast and be at the rental office by 8 for the keys. By then, the sun was out and it was gorgeous. The town was alive again, and it was as beautiful as our favorite Caribbean island, Aruba.
Our entire family was filled with nervous excitement as we drove to our new home and finally unlocked the doors. It was better than we could have imagined! Beautiful, new, and clean, with rooms the perfect size for us, and giant closets for all the toys from our previously huge playroom (which we don't have here), this house has everything I could have ever wanted, and more. It is not a mansion by any stretch, nor is it total luxury, but it has a lot of high-quality features that seem to make life easier and more pleasant. There is something wonderful about a master bathroom with a giant soaking tub and a toilet with a door. Hello, relaxation! In choosing to live in Florida, one thing we considered a must was a swimming pool. For years in Pennsylvania we had been members of our community YMCA pool, and though we always had a blast there, for me, taking three children alone was more work than it was worth, and thus we didn't use it as much as we would have liked. Here, it is right out our back door, and we have the bonus feature of total privacy, since there are no neighbors next door and the canal behind us provides a generous buffer between us and the street behind. The view is truly incredible as well. There seems to always be a breeze: again, just like Aruba! When I am out there, I breathe as deeply as possible (which is still a little tricky on that pesky right side), and soak it all in.
Symptom-wise, yesterday was the first day I truly began to feel good again. It was also the final day of my SECOND round of antibiotics. 20 days in total, going back to mid-June. Finally, the signs of infection are all but gone, and I am breathing almost normally again. There is a slight sensation of swelling or congestion on the right side, but air is flowing, which feels fantastic. I am continuing with the strictest regiment of twice daily rinses with one pulmicort (steroid) rinse, two nasal sprays, twice a day (an antihistimine and a steroid), and Zyrtec. I am also continuing to take my supplements and vitamins, to which I recently added Calcium at the suggestion of the doctor friend we had stayed with in North Carolina. Apparently, prednisone gets in the way of calcium absorption, something which would have been helpful to know a long time ago, especially considering my age and gender. At least I know now, and am going to step up my calcium to try to make up for it.
Physically I am finally over the feeling of total exhaustion that has been with me for weeks. Unlike with past infections, when I would feel this way for no apparent reason, this time it was pretty clear that I was tired because of the physical labor involved in moving. Also, when I take prednisone I don't sleep as deeply, so probably this contributed as well. Yesterday I slept in until 8:30 for the first time in forever, and it felt great! Now I feel like I am almost back to my normal self, rested and just about over this infection (but not quite there yet).
Despite the boxes to unpack, things around the house have been mostly calm and quiet. The children are in heaven with the swimming pool out back, and they are highly motivated to get along, clean up, or eat all of their food if a chance to go swimming is the reward. Having a one-floor home seems to contribute to cooperation and happiness as well. While I am in the kitchen or laundry room, they are playing in one of their bedrooms just a few feet away. Somehow, it makes things easier and everyone has been super happy.
Now that we are getting settled, we have entered a small stage of having visitors, beginning with my mom's arrival from South Carolina. We are so happy to have her here! It is fun to finally have someone to share our joy with, as we can hardly contain it! In two weeks, Jon's parents will come as well! God has been so faithful to us so far, and we have no doubt that He will continue to provide for all of our needs, including my health and restoration as each day I feel better and better! We are incredibly thankful for all of the friends and family out there who have been praying for us. Keep it up-- it is working! I hope to continue to be able to post positive updates on this blog.
Tomorrow we are taking our first excursion over to Sanibel Island, which we visited back in April. It is one of the most gorgeous natural settings we've ever visited! Mom has never been there, so it will be fun to explore it some more with her, and to relax and let the kids play in the sun and sand for as long we we care to stay. After all, it will only be a thirty minute ride back home again!
Friday, July 1, 2011
North Carolina
Today we are in beautiful Cary, North Carolina visiting PA friends who recently moved here. We arrived last night and spent the day today relaxing and seeing a bit of the area, including a lovely park where we rented canoes and explored a small lake.
My health symptoms are improving a bit now that I've been on the new antibiotic and steroids for three days. My left side is completely clear and the right is almost there, although I am still not getting full air flow. I haven't been able to do my rinsing like I do at home, since we've been on the road and in other people's homes. Hopefully I will get one in tonight, as that does help a little.
We have one more day here tomorrow, and then we hit the road again early Sunday morning for South Carolina. The adventure continues!
My health symptoms are improving a bit now that I've been on the new antibiotic and steroids for three days. My left side is completely clear and the right is almost there, although I am still not getting full air flow. I haven't been able to do my rinsing like I do at home, since we've been on the road and in other people's homes. Hopefully I will get one in tonight, as that does help a little.
We have one more day here tomorrow, and then we hit the road again early Sunday morning for South Carolina. The adventure continues!
Wednesday, June 29, 2011
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!
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!
Friday, June 24, 2011
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.
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.
No Relief In Sight
It is 2 AM and I am awake, beyond miserable with congestion. I feel as if someone has stuffed half a dozen cotton balls in each nostril and then sealed them with duct tape. I have already woken several times tonight with nose-blowing, until finally about thirty minutes ago I decided to do a sinus rinse, take more allergy medicine, and see if it helped. It didn't; I think it made it worse. I was back in bed, propped up with humidifier running (we had to borrow it from Luke's room-- his allergies have been so bad this week he ended up with an ear infection), gulping down air with my already-dried-up mouth and cracking lips. Cracking lips is what happens when you've been breathing with your mouth constantly for more than 10 days.
I literally feel as if this could kill me.
I know it can't, of course, but I imagine if I had lived a few hundred years ago, or were in some remote place that had never heard of these symptoms, this is what I would be thinking. Expecting, even. My body seems to hate me, and no amount of medication or remedy is offering any relief.
Last week I posted that I called the doctor after 4 days of worsening symptoms, and was put on the antibiotic Biaxin. That was a week ago today, and I am no better. Any other normal person would be feeling better sometime within 24 hours of starting an antibiotic, but not me. This is with the stronger of the two doses that I am aware of. We aren't talking Amoxicilian, either. Luke's "yummy pink medicine" ceased to be effective three years or about one hundred infections ago. I have moved up the ladder to a point where, I'm afraid, no antibiotic will work for me. I am maxing out on my usual cocktail of other medications as well. I been taking 24-hour Zyrtec daily, plus the occasional piggy-backing of a short-term antihistimine, as I did tonight, even though it is not recommended to add a similarly-acting drug while another is in your bloodstream. My other main, almost daily stand-by, Sudafed, is also floating in my system, although not as much so at night because it keeps me awake. During the day it gives me caffeine-like energy, which I need right now, and clears the airways to a degree of toleration. I have also been diligently rinsing once a day and popping vitamins, Fish Oil, high-end Probiotics, and lots of water.
As I am writing I feel somewhat better emotionally. I no longer feel that I might die. There is hope for me as long as I am reminded of a world beyond my physical misery. I only wish that there were some answers for me, especially to those "why" questions:
"Why does this keep happening? Why do I get an infection and it won't clear up with medication? Why am I experiencing extreme allergy symptoms right now (worsening congestion, itchy ears and throat, sneezing), despite having negative allergy testing multiple times over several years? Why has every possible medical explanation been explored and become a dead-end? Why did I get sick just one month after surgery? Why is my body so messed up when I have been healthy my entire life?"
And then there is the final "what" question that has been plaguing me ever since this infection started 10 days ago: "What if moving to Florida doesn't work. What if I am still sick?"
I just don't know what I, or we, will do if that is the case. I could look at the positive and appreciate the nice weather and beautiful surroundings. Or, as Jon has suggested recently, we get on some list, somehow, to get me into one of the best clinics in America so I can be studied full-time by a team of the smartest doctors, who will not stop until they have a diagnosis that will explain and cure my issues permanently. I don't know if that would even be possible, considering I am not suffering from a disease that will kill me. At least not in the literal sense.
We are moving in just a few short days, and we are trying to remain hopeful as we earnestly pray that it will work. My fantasy is that we will open the doors of the car in Southwest Florida, and I will suddenly be able to take a deep breath of that fresh, hot air, and smell the flowers and the ocean and my kids' hair, and never think about sinusitis again. But I know that won't happen, except by miracle, which I suppose I should add to my prayer list. Being a little more detailed about my request with God might help, perhaps. But what I expect, from my experience with this, is that it is going to be an battle yet. Hopefully the clean air will be on my side, and this sinus infection can clear up for good within a short period of time. I hope so, because one thing I have not done is to look up a doctor in the area. Though I guess I should, at this point. So now I will go back to drinking my hot tea and hope I can get sleepy enough to not be bothered by all the congestion and pressure.
I literally feel as if this could kill me.
I know it can't, of course, but I imagine if I had lived a few hundred years ago, or were in some remote place that had never heard of these symptoms, this is what I would be thinking. Expecting, even. My body seems to hate me, and no amount of medication or remedy is offering any relief.
Last week I posted that I called the doctor after 4 days of worsening symptoms, and was put on the antibiotic Biaxin. That was a week ago today, and I am no better. Any other normal person would be feeling better sometime within 24 hours of starting an antibiotic, but not me. This is with the stronger of the two doses that I am aware of. We aren't talking Amoxicilian, either. Luke's "yummy pink medicine" ceased to be effective three years or about one hundred infections ago. I have moved up the ladder to a point where, I'm afraid, no antibiotic will work for me. I am maxing out on my usual cocktail of other medications as well. I been taking 24-hour Zyrtec daily, plus the occasional piggy-backing of a short-term antihistimine, as I did tonight, even though it is not recommended to add a similarly-acting drug while another is in your bloodstream. My other main, almost daily stand-by, Sudafed, is also floating in my system, although not as much so at night because it keeps me awake. During the day it gives me caffeine-like energy, which I need right now, and clears the airways to a degree of toleration. I have also been diligently rinsing once a day and popping vitamins, Fish Oil, high-end Probiotics, and lots of water.
As I am writing I feel somewhat better emotionally. I no longer feel that I might die. There is hope for me as long as I am reminded of a world beyond my physical misery. I only wish that there were some answers for me, especially to those "why" questions:
"Why does this keep happening? Why do I get an infection and it won't clear up with medication? Why am I experiencing extreme allergy symptoms right now (worsening congestion, itchy ears and throat, sneezing), despite having negative allergy testing multiple times over several years? Why has every possible medical explanation been explored and become a dead-end? Why did I get sick just one month after surgery? Why is my body so messed up when I have been healthy my entire life?"
And then there is the final "what" question that has been plaguing me ever since this infection started 10 days ago: "What if moving to Florida doesn't work. What if I am still sick?"
I just don't know what I, or we, will do if that is the case. I could look at the positive and appreciate the nice weather and beautiful surroundings. Or, as Jon has suggested recently, we get on some list, somehow, to get me into one of the best clinics in America so I can be studied full-time by a team of the smartest doctors, who will not stop until they have a diagnosis that will explain and cure my issues permanently. I don't know if that would even be possible, considering I am not suffering from a disease that will kill me. At least not in the literal sense.
We are moving in just a few short days, and we are trying to remain hopeful as we earnestly pray that it will work. My fantasy is that we will open the doors of the car in Southwest Florida, and I will suddenly be able to take a deep breath of that fresh, hot air, and smell the flowers and the ocean and my kids' hair, and never think about sinusitis again. But I know that won't happen, except by miracle, which I suppose I should add to my prayer list. Being a little more detailed about my request with God might help, perhaps. But what I expect, from my experience with this, is that it is going to be an battle yet. Hopefully the clean air will be on my side, and this sinus infection can clear up for good within a short period of time. I hope so, because one thing I have not done is to look up a doctor in the area. Though I guess I should, at this point. So now I will go back to drinking my hot tea and hope I can get sleepy enough to not be bothered by all the congestion and pressure.
Saturday, June 18, 2011
Poked and Prodded
My company decided two years ago to put healthcare "in the hands of employees," which means I am now my own plan admin. Thanks a lot. If anything, it is interesting to see how much healthcare costs us and what Melissa has been dealing with the past three years. Aetna has tons of data on their website and looking at our family's "Health History Report" the difference between the two of us is incredible. I always tell her that the data never lies...
Medical "service" comparison between the two of us:
Medical "service" comparison between the two of us:
Yes, 145 medical services versus 21 over 3 years (and this does not include the first year of infections and ENT visits, or her initial surgery in 2008)!
Medical services include all doctor visits, procedures at visits, blood tests, flu shots, CTs, etc . For me it was poison ivy last year, 1 sinus infection this year, and some general doctor visits.
Just to get an idea of what the amount of testing, visits, and procedures is like for someone with chronic sinusitus :
| 1 | 3/11/2009 | OFFICE VISIT |
| 2 | 3/26/2009 | FIBERSCOPIC LARYNGOSCOPY |
| 3 | 3/26/2009 | OFFICE VISIT |
| 4 | 4/21/2009 | OFFICE VISIT |
| 5 | 4/22/2009 | NASAL ENDOSCOPY |
| 6 | 4/22/2009 | OFFICE VISIT |
| 7 | 5/7/2009 | NASAL ENDOSCOPY, SURGICAL;93 |
| 8 | 5/7/2009 | ENDOSCOPY, MAXILLARY SINUS |
| 9 | 5/7/2009 | SINUS SURGICAL ENDOSCOPY |
| 10 | 5/7/2009 | NASAL/SINUS ENDOSCOPY-SURG |
| 11 | 5/7/2009 | MISCELLANEOUS SERVICES |
| 12 | 5/7/2009 | CAT SCAN OF FACE, JAW |
| 13 | 5/7/2009 | 3D RENDERING WITH INTERPRETA |
| 14 | 5/7/2009 | MEDICAL SERVICES |
| 15 | 5/7/2009 | DECALCIFY TISSUE |
| 16 | 5/7/2009 | INTRODUCER/SHEATH, GUIDING |
| 17 | 5/7/2009 | MORPHIN SULF UPTO 10MG/192MX |
| 18 | 5/7/2009 | ONDANSETRON HCL PER 1MG/32MX |
| 19 | 5/7/2009 | PROMETHAZ HCL UP TO 50MG/1MX |
| 20 | 5/7/2009 | METOCLOPRA HCL UPTO 10MG/4MX |
| 21 | 5/7/2009 | NORMAL SALINE 1000CC/1 MX |
| 22 | 5/7/2009 | RINGR LACT UPTO 1000CC/1.5MX |
| 23 | 5/7/2009 | PHARMACY |
| 24 | 5/7/2009 | MED-SUR SUPPLIES |
| 25 | 5/7/2009 | STERILE SUPPLY |
| 26 | 5/7/2009 | LABORATORY |
| 27 | 5/7/2009 | PATHOLOGY LAB |
| 28 | 5/7/2009 | CT SCAN |
| 29 | 5/7/2009 | CT SCAN/OTHER |
| 30 | 5/7/2009 | OR SERVICES |
| 31 | 5/7/2009 | ANESTHESIA |
| 32 | 5/7/2009 | DRUGS/DETAIL CODE |
| 33 | 5/7/2009 | RECOVERY ROOM |
| 34 | 5/7/2009 | NASAL ENDOSCOPY, SURGICAL;93 |
| 35 | 5/7/2009 | ENDOSCOPY, MAXILLARY SINUS |
| 36 | 5/7/2009 | SINUS SURGICAL ENDOSCOPY |
| 37 | 5/7/2009 | NASAL/SINUS ENDOSCOPY-SURG |
| 38 | 5/7/2009 | MISCELLANEOUS SERVICES |
| 39 | 5/8/2009 | NORMAL SALINE 1000CC/1 MX |
| 40 | 5/8/2009 | DRUGS/DETAIL CODE |
| 41 | 5/15/2009 | BASAL/SINUS ENDOSCOPY-SURGIC |
| 42 | 5/15/2009 | OFFICE VISIT |
| 43 | 5/22/2009 | BASAL/SINUS ENDOSCOPY-SURGIC |
| 44 | 5/22/2009 | OFFICE VISIT |
| 45 | 5/29/2009 | BASAL/SINUS ENDOSCOPY-SURGIC |
| 46 | 5/29/2009 | OFFICE VISIT |
| 47 | 6/5/2009 | NASAL ENDOSCOPY |
| 48 | 6/5/2009 | OFFICE VISIT |
| 49 | 7/17/2009 | NASAL ENDOSCOPY |
| 50 | 7/17/2009 | OFFICE VISIT |
| 51 | 8/20/2009 | ASSAY, IGA/IGD/IGG/IGM EACH |
| 52 | 8/20/2009 | IGG 1,2,3 OR 4, EACH |
| 53 | 8/20/2009 | IMMUNOASSAY, NONANTIBODY |
| 54 | 8/20/2009 | OFFICE VISIT |
| 55 | 9/2/2009 | FIBERSCOPIC LARYNGOSCOPY |
| 56 | 9/2/2009 | OFFICE VISIT |
| 57 | 10/2/2009 | NASAL ENDOSCOPY |
| 58 | 10/2/2009 | OFFICE VISIT |
| 59 | 11/13/2009 | NASAL ENDOSCOPY |
| 60 | 11/13/2009 | OFFICE VISIT |
| 61 | 12/16/2009 | AMP PROBE |
| 62 | 12/16/2009 | OFFICE VISIT |
63 | 12/16/2009 | PREV VISIT, EST, AGE 18-39 |
| 64 | 12/29/2009 | OFFICE VISIT |
| 65 | 12/31/2009 | LIPID PROFILE |
| 66 | 12/31/2009 | HEPATIC FUNCTION PANEL |
| 67 | 12/31/2009 | RIA ASSAY, TRUE THYROXINE |
| 68 | 12/31/2009 | ASSAY THYROID STIM HORMONE |
| 69 | 1/20/2010 | OFFICE VISIT |
| 70 | 1/20/2010 | NASAL ENDOSCOPY |
| 71 | 2/16/2010 | OFFICE VISIT |
| 72 | 2/19/2010 | OFFICE VISIT |
| 73 | 2/19/2010 | FIBERSCOPIC LARYNGOSCOPY |
| 74 | 3/8/2010 | RIA ASSAY, TRUE THYROXINE |
| 75 | 3/8/2010 | ASSAY THYROID STIM HORMONE |
| 76 | 3/8/2010 | ASSAY TRYROID (T-3 OR T-4) |
| 77 | 3/25/2010 | COMPREHEN METABOLIC PANEL |
| 78 | 3/25/2010 | AUTOMAT HEMOGRAM-COMPLET DIF |
| 79 | 3/25/2010 | RBC SED RATE, AUTO |
| 80 | 3/25/2010 | LYME DISEASE ANTIBODY |
| 81 | 3/25/2010 | PREV VISIT, EST, AGE 18-39 |
| 82 | 4/26/2010 | OFFICE VISIT |
| 83 | 6/28/2010 | OFFICE VISIT |
| 84 | 6/28/2010 | EVALUATION OF WHEEZING |
| 85 | 9/29/2010 | ALLERGY SKIN TEST |
| 86 | 9/29/2010 | OFFICE VISIT |
| 87 | 10/20/2010 | OFFICE VISIT |
| 88 | 10/20/2010 | NASAL ENDOSCOPY |
| 89 | 11/1/2010 | CONSULTATIONS |
| 90 | 11/26/2010 | CULT BACT;NO URINE/BLD/STOOL |
| 91 | 11/26/2010 | OFFICE VISIT |
| 92 | 12/6/2010 | FLU VIRUS VACC-SPLIT 3 YR & |
| 93 | 12/6/2010 | FLU VIRUS VACC-SPLIT 3 YR & |
| 94 | 12/6/2010 | ADMIN INFLUENZA VIRUS VAC |
| 95 | 12/6/2010 | ADMIN INFLUENZA VIRUS VAC |
| 96 | 12/10/2010 | OFFICE VISIT |
| 97 | 12/10/2010 | NASAL ENDOSCOPY |
| 98 | 12/13/2010 | UPPER GI ENDOSCOPY,DIAGNOSIS |
| 99 | 12/13/2010 | UPPER GI ENDOSCOPY,DIAGNOSIS |
| 100 | 12/13/2010 | AMBUL SUR |
| 101 | 12/29/2010 | OFFICE VISIT |
| 102 | 1/3/2011 | ASSAY, IGA/IGD/IGG/IGM EACH |
| 103 | 1/3/2011 | ASSAY OF IGE |
| 104 | 1/3/2011 | ANTINUCLEAR ANTIBODIES, RIA |
| 105 | 1/10/2011 | PREV VISIT, EST, AGE 18-39 |
| 106 | 1/19/2011 | CONSULTATIONS |
| 107 | 1/25/2011 | ASSAY THYROID STIM HORMONE |
| 108 | 1/25/2011 | MICROSOMAL ANTIBODY, RIA |
| 109 | 1/31/2011 | OFFICE VISIT |
| 110 | 2/17/2011 | OFFICE VISIT |
| 111 | 2/23/2011 | OFFICE VISIT |
| 112 | 2/23/2011 | NASAL ENDOSCOPY |
| 113 | 3/11/2011 | CAT SCAN OF FACE, JAW |
| 114 | 3/11/2011 | 3D RENDERING WITH INTERPRETA |
| 115 | 3/11/2011 | CT SCAN |
| 116 | 3/11/2011 | CT SCAN/OTHER |
| 117 | 3/25/2011 | OFFICE VISIT |
| 118 | 3/25/2011 | NASAL ENDOSCOPY |
| 119 | 4/14/2011 | OFFICE VISIT |
| 120 | 5/16/2011 | ANESTHESIA |
| 121 | 5/16/2011 | COLLECTION OF VENOUS BLOOD |
| 122 | 5/16/2011 | METABOLIC PANEL TOTAL CA |
| 123 | 5/16/2011 | MEDICAL SERVICES |
| 124 | 5/16/2011 | HEMO/PLATELET CNT-AUTOMATED |
| 125 | 5/16/2011 | DECALCIFY TISSUE |
| 126 | 5/16/2011 | LABORATORY |
| 127 | 5/16/2011 | LAB/HEMATOLOGY |
| 128 | 5/16/2011 | PATHOLOGY LAB |
| 129 | 5/16/2011 | NASAL ENDOSCOPY, SURGICAL;93 |
| 130 | 5/16/2011 | ENDOSCOPY, MAXILLARY SINUS |
| 131 | 5/16/2011 | SINUS SURGICAL ENDOSCOPY |
| 132 | 5/16/2011 | NASAL/SINUS ENDOSCOPY-SURG |
| 133 | 5/16/2011 | NASAL ENDOSCOPY, SURGICAL;93 |
| 134 | 5/16/2011 | SCAN PROC CRANIAL EXTRA |
| 135 | 5/16/2011 | INTRODUCER/SHEATH, GUIDING |
| 136 | 5/16/2011 | ADRENALIN EPINEPHRINE INJECT |
| 137 | 5/16/2011 | RINGR LACT UPTO 1000CC/1.5MX |
| 138 | 5/16/2011 | PHARMACY |
| 139 | 5/16/2011 | MED-SUR SUPPLIES |
| 140 | 5/16/2011 | SUPPLY/IMPLANTS |
| 141 | 5/16/2011 | OR SERVICES |
| 142 | 5/16/2011 | DRUGS/DETAIL CODE |
| 143 | 5/16/2011 | RECOVERY ROOM |
| 144 | 6/8/2011 | OFFICE VISIT |
| 145 | 6/8/2011 | NASAL ENDOSCOPY |
'nuff said.
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