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!).
Tuesday, August 30, 2011
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.
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