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!
Wednesday, June 29, 2011
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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