swedish hospital…a 5-star resort?

Hubby and I had a date Saturday…touring the brand, spanking new Swedish Hospital in the Issaquah Highlands. We thought we’d make a quick stop, check it out, and be on our way to our real destination…Molbak’s Nursery, gift shop and cafe in Woodinville. Well, we never made it to see the flowers, plants and knick-knacks, or lunch among the lush foliage. Instead we wandered around the new hospital with thousands of other curious tourists to what seemed like a resort, not a place where the sick and maimed go to be cured and put back together again. I’m sure I wandered around, my mouth agape the whole time. We were all like children in a new candy shop, sampling everything with our eyes. I wasn’t the only one who was bug-eyed either.

Walking through glass doors which parted without hesitation, I immediately saw a Starbuck’s to my right…already with a line of people. No small wonder there. Tucked in the corner between the cafe and the front door was the restaurant. Visiting it later, I saw that it was on the caliber of any good dining destination in the community at large. Viewing the grandeur of the Pacific Northwest through the surrounding glass walls would also be a treat…a very calming one for sure.

Wandering further inside through what felt like a grand foyer, a reception desk sat to the left, and next to it a staircase leading to the second floor. Straight ahead was the bank of elevators, and to the right, past Starbuck’s was a gift shop. Rather, I should say, a mall of shops. After touring the floors above, I spent some time wandering in and out of the several stores. This is probably when I most felt like I was not in a hospital.

What appeared to be the main gift shop was lit up with a beautifully handrafted chandelier made by a local artist. Directly beneath was a table also crafted by another homegrown talent. In fact, most of the items in the shop were made here in the Pacific Northwest according to the shop’s lovely manager. She spent a few moments of her time talking with me, smiling all the while. A definite asset to what could be an intimidating environment for some. After all, this was still a hospital.

Walking through an oversized open doorway into the next shop, I delighted in seeing all manner of gifts for newborns and toddlers. Some items I’d never seen elsewhere. Across the way was another, very large, retailer selling exercise clothes, lingerie, and if I’m not mistaken, some maternity items for expectant mothers. One fun gift for you or someone else was a “snap” watch for around $16. The salesclerk kindly showed me how it operated. She stretched out the watchband, snapped it across her wrist, and “voile!” the watchband wrapped itself securely in place. What don’t people invent these days?!?

Down the hallway, next door to the shop with baby gifts, was a small studio for yoga classes. The nice volunteer offered information on how I could sign up for classes. Of course, it involved the internet. What doesn’t these days? Evidently I can check out the schedule for times and styles of yoga on the Swedish Hospital website. I might have to do that. I’ve always wanted to take a yoga class on a regular basis. Good for the body…and mind.

There were doctors, nurses, and technicians milling about to answer any questions. It was amazing to see so many of the staff smiling and relaxed. I’ve usually only seen them hurrying off to tend to patients. And I mean hurrying! Hopefully they’ll continue to smile once they get back to business as usual. I like smiling medical staff. They calm my nerves. Wouldn’t they make you feel more comfortable? They would me.

In October I’ll be having a colonoscopy and endoscopy done by Dr. David Patterson, Medical Director of Gastroenterology at Swedish. I met up with him again at the open house, after having talked with him a month or so ago at our initial consultation. Originally from New Zealand, he retains very little of his accent. Having lived here in the States for 35 years, I can understand why. Dr. Patterson’s ready smile and easy “bedside” manner goes far in steadying my nerves for the impending procedures. Knowing he sees many people in the course of his practice, and having met me only once, I was amazed that he could recall who I was as throngs of people were milling all around us. The key to unlocking his memory about me was that my daughter was a ballerina. We’d discussed it at our first meeting when he asked if I had children. Of course, ask a mom about her offspring…and you’ve got a friend for life. Well, let’s see what I think after the doc goes to work on me in the Fall. I’ll let you know then…

Meanwhile I’ve only good things to say about the new Swedish Hospital and their staff. They’ve served me well for more than a decade, the doctors and nurses, that is. Oh, and the ER team at the old facility. Between my husband and me, we’ve seen them a few times over the years, for various and sundry minor crises, which seemed somewhat major at the time…episodes of asthma, pains mimicking a heart attack. You know, the usual.

The new Emergency Room check-in looked like that in any 5-star hotel. But that’s as far as we went. I’m hoping we won’t have to see the rest of the ER anytime soon. Unfortunately we didn’t do any of the tours offered. The one to see the surgical facility had a line of people the length of the hallway. Since hubby and I were on a “date,” and we’d already spent a couple of hours sightseeing, we decided we’d seen enough to convince us that the hospital was pretty much just what the hype was all about.

it’s what the doctor ordered…and it’s just fine by me…hugmamma.

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details…little known facts

Secret Service agents in response at the assas...

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In summing up what I’ve learned about President Ronald Reagan and First Lady Nancy Reagan from reading I Love You, Ronnie, a couple of details came to light which I’d not known before. And according to Mrs. Reagan, only those close to what occurred at the time, knew. The first dealt with the assassination attempt on the President’s life 3 months after he took office. The second was an incident that probably caused the premature onset of his Alzheimer’s. Only a handful, it seems, were privvy to both occurrences.

Waiting for news, Nancy Reagan sat with Sarah Brady, whose husband Jim had also been shot in the attempt on the President’s life.

As we waited, I looked out the window and saw how, in the buildings all around the hospital, people had thrown sheets out the window saying things like GET WELL, MR. PRESIDENT and WE LOVE YOU, MR. PRESIDENT. Every now and then, a nurse would come and report to me on Ronnie’s progress. At first, the doctors were having trouble finding the bullet, which was a devastator bullet, the kind that explodes inside. One time, the nurse came and said, “We just can’t seem to get it out. We may just have to leave it in.” Well, that didn’t sound so good to me. And then another time, she said, “They’ve found it, but the doctor is having a hard time removing it–it keeps slipping from his fingers.” Finally, she came back and told me that the doctor had gotten it out, but I almost lost him then. The bullet had been lodged an inch from Ronnie’s heart.

We were lucky–we didn’t realize how lucky, in fact–because when Ronnie had arrived, all the doctors were in the hospital for a meeting. No one had to be called in. Everyone Ronnie needed was right on hand, and there was no waiting. …

I wanted to stay there all night, but the feeling was that it would be better for the country if I left and went back to sleep at the White House. Otherwise, people would have assumed the worst and there would have been panic. As it was, Ronnie’s aides had to do all they could to calm the country down. The briefings made to the press were partial, to say the least. The assassination attempt was really a much closer call than people were led to believe at the time. Everyone was trying not to frighten the people in the country, but the fact was, Ronnie almost died. It was a miracle that he didn’t. And I knew all along how serious things really were. …

Needless to say, I was terrified. After the shooting, every time Ronnie walked out the door to make a public appearance, my heart would stop–and it wouldn’t start again until he came back home safely. Ronnie knew how scared I was. But if he was frightened too, he never let me know it. As always, he was cheerful and optimistic. God had spared him, he believed; there had to be a reason why. By making jokes…he tried to take the edge off my fear.

The Reagans wave from the White House after Pr...

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Who could fault the First Lady’s hovering over the President thereafter? No wonder her seeming control of his life, personal and public, for which the media liked to criticize her. I know because they had me convinced she was running the country with her husband, an unofficial cabinet member, as was constantly written and spoken of in the news. How the spinmeisters love to slant the facts. Readers, beware!

Fast forward to July 1989, after the Reagans had left the White House. Visiting with friends Betty and Bill Wilson at their ranch in Mexico, the President went riding. An accident occurred.

Ronnie had been thrown off his horse. He was riding with some other men, going up an incline, when one of the ranch hands had hit something that made a loud noise and spooked Ronnie’s horse.

The horse reared once, and Ronnie stayed on. It reared a second time, and Ronnie stayed on again. Two Secret Service men tried to move in and calm the horse, but they couldn’t do it. The horse reared a third time, bucking so hard that Ronnie fell off and hit his head on the ground, miraculously missing the jagged rocks all around.

President Ronald Reagan

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We got him on a plane and immediately took him to a hospital in Tucson, Arizona. He should really have stayed there, but it was my birthday and the Wilsons had planned a celebration, and Ronnie was determined to go back to the ranch. We went back–but at my insistence, we took a doctor with me.

The day after…we flew home. I was very uneasy and kept at Ronnie until he agreed to get his head X-rayed. We went to the Mayo Clinic, where we’d gone every year for checkups. It turned out that Ronnie had a concussion and a subdural hematoma. He needed to be operated on right away. It all happened so quickly that I think, once again, I was in shock. …

I’ve always had the feeling that the severe blow to his head in 1989 hastened the onset of Ronnie’s Alzheimer’s. The doctors think so, too. In the years leading up to the diagnosis of the disease, in August 1994, he had not shown symptoms of the illness. I didn’t suspect that Ronnie was ill when we went back to the Mayo Clinic that summer for our regular checkup. When the doctors told us they’d found symptoms of Alzheimer’s, I was dumbfounded. Ronnie’s fall from the horse had worried me terribly, of course, and I’d had to urge him to take time out to recover after his operation. But I had seen no signs of anything else.

There’s no telling if President Reagan would have enjoyed more years of retirement, free from the debilitating symptoms of Alzheimer’s. How fragile the brain, with only the skull as protection from the hazards of everyday life…like horse back riding. Spared from the assassin’s bullet, Reagan succumbed to no less a devastating end. As his devoted wife, and true witness to her husband’s last 50 years on earth, Nancy Reagan suffered Alzheimer’s alongside him.

Senator Corker greets former First Lady Nancy ...

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…First of all, there is a feeling of loneliness when you’re in this situation. Not that your friends aren’t supportive of you; they are. But no one can really know what it’s like unless they’ve traveled this path–and there are many right now traveling the same path I am. You know that it’s a progressive disease and that there’s no place to go but down, no light at the end of the tunnel. You get tired and frustrated, because you have no control and you feel helpless. We’ve had an extraordinary life, and I’ve been blessed to have been married for almost fifty years to a man I deeply love–but the other side of the coin is that it makes it harder. There are so many memories that I can no longer share, which makes it very difficult. When it comes right down to it, you’re in it alone. Each day is different, and you get up, put one foot in front of the other, and go–and love; just love.

I try to remember Ronnie telling me so many times that God has a plan for us which we don’t understand now but one day will, or my mother saying that you play the hand that’s dealt you. It’s hard, but even now there are moments Ronnie has given me that I wouldn’t trade for anything. Alzheimer’s is a truly long, long good-bye. But it’s the living out of love.

Photograph of Newlyweds Ronald Reagan and Nanc...

Image by The U.S. National Archives via Flickr

…blest by true love…even in the face of adversity…hugmamma. 

 

no a/c, a stroke, and bedbugs…???

Red bedbug

So we finally come to the end of this tragi-comedy about bedbugs in my daughter’s apartment, the old one that is. Content with having secured a new place in the nick of time, my daughter felt extremely fortunate to have somewhere to go, leaving her unwelcome buddies behind. (Fingers xxxxx.) But just when things seemed to be going her way, the a/c in her new apartment went on the fritz…almost immediately.

Traveling west to be with my husband and me, my daughter missed the initial couple of weeks without a/c in her new digs. A couple of friends took turns trying to have repair people stop by to put more freeon in the old a/c unit. The excuse given by the company  who was referred by the apartment’s owner and landlord, was that the technician didn’t have a ladder long enough to get to the roof where the unit stood. When my daughter and I returned to her home, that was the same excuse given by a couple of other a/c servicers. In fact one technician who did come, left without even telling us he couldn’t do the job. Not until an hour-and-a-half slipped by without a knock at the front door, did my daughter learn after calling his company that he left because they don’t service that particular brand. Upon relaying this info to the landlord, he exclaimed that the company got the brand name wrong. He indicated he would try to track down another company through the insurance he had for repair services. My daughter also gave him the name of the company whose truck we had seen in the parking lot of the neighboring apartment house, the same day our disappearing a/c guy showed up. Those workers looked like they were diligently working to get some problem resolved, even in the sweltering 90+ temperatures. As it turned out, a couple of men from that company visited my daughter’s apartment later that afternoon.

Upon checking the interior part of the a/c unit in my daughter’s apartment, it was determined that there was a leak. After reporting this to the landlord, the company’s co-owner visited us the next day under orders to do whatever it took to fix the a/c. Because it was so old, the replacement part could only be gotten from a manufacturer in Texas. It wasn’t expected to arrive until the following Tuesday, so that the a/c couldn’t be fixed until Wednesday or Thursday. That meant several days of sweltering heat inside the apartment.

Happy that the a/c was going to be fixed, I didn’t calculate the hours we would have to suffer through the 90+ degrees even as we tried to sleep. I imagined with 5 fans blowing day and night we would manage. Was I ever wrong! One night is all it took to decide that my aging body was not up to the task. I awoke to find my hands and fingers, feet and toes swollen. The blood had rushed to the surface of my skin as if to escape the confinement. I’d never had to worry about high blood pressure before. But I was certain if I slept there another night, my pressure would be through the roof!

And that’s why we made the unlikely decision to bed down with the bedbugs, my daughter on the couch, me on the bed in the second bedroom. Because both had been treated, we hoped we wouldn’t make a hearty 9-course meal for any starving bedbugs. I think we willed ourselves not to scratch. 

My daughter’s new landlord must’ve “paid an arm and a leg” to repair the a/c. Besides it being an emergency repair with a new servicer, the necessary part had to be Fed Exed from out of state, and a crane was hired to haul the a/c from atop the apartment building so that it could be fixed on the ground and then put back in place. Added to that, the servicer had to repair the indoor unit which had been leaking the freeon. Why the a/c was installed atop the three-story building in the first place is unknown to us. I guess things were done differently in the 70s. But it was while my daughter and I were waiting for the a/c to be fixed that we got food poisoning. After that, everything else  became “background music.”

A Bed Bath and Beyond store in a shopping cent...

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How did we manage to contract salmonella, you ask? Well on one of our outings to Bed, Bath and Beyond to secure new pillows and their corresponding bedbug resistant covers, we stopped to buy a few groceries on the way home. Remember, the temperatures were in the mid-90s. Deciding to eat a light, healthy lunch, we opted for a veggie platter. Not realizing that the included dip was probably turning rancid as we drove another 20 minutes home, we proceeded to chow down once there. With floor fans set to their highest levels, we munched away feeling the cool blasts on our faces and bodies. Mind you, the indoor temperature over the next several hours was also in the mid-90s. It’s my belief that we were ignorant to the fact that salmonella was probably making its way into our digestive tracts. My daughter’s case may have been slightly more severe since she also feasted on a dessert of chocolate pudding pie. Something we’d picked up from a nearby restaurant the day before, which served up real southern cooking, a haven for high cholesterol foods.

As I mentioned before, my daughter’s recovery from food poisoning went relatively smoothely. There were no residual effects, unlike my bout. While my vomiting and diarrhea ended, the nausea, queasiness, and mild dizziness persisted. I just didn’t feel 100%. A couple of times I was overcome by tears, so frustrated that I couldn’t attack the chores with the same gusto I’d had prior to being ill. The second time was when I heard my husband’s voice on the phone asking how we were. Bawling, I told him how much I missed him and couldn’t wait for him to arrive to assume control. My brains were “fried,” I told him.

I’d wanted to accomplish so much before my husband joined us. Because of the extreme heat and humidity I feared his asthma would flare up if he tried to do too much. I didn’t want him landing in the ER during his short, four day visit. I even contracted a private mover to transport my daughter’s large pieces of furniture from one apartment to another. The price was fair for the heavy lifting involved, and the 2 flights of stairs the men had to climb at her new place. My husband was immensely grateful for my last minute decision to hire someonelse. He’d forgotten how weighty the huge, glass bookcase was. Not one to drink bottles and bottles of water, my husband felt moving such massive furniture in the heat would have been very difficult for him. I also took pity on any male dancer friend of my daughter’s who had offered their services. I didn’t want their aches and pains or worse, broken bones, on my conscience.

Grateful for my husband’s contribution to our ongoing efforts to move stuff from storage to the old apartment, and then to the new apartment, I continued to deal with the lingering effects of food poisoning. It was distressing to have to stop what I was doing and rest until I felt better. I attempted to ignore what I was feeling, but wasn’t able to in the end. I had to give in, and go with what was happening. Such an occasion occurred while we were shopping for hardware at a local Lowe’s Hardware.

 

A typical Lowe's storefront in Santa Clara, Ca...

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Walking up and down the aisles looking at storage paraphernalia, I felt lightheaded, as if I were about to faint. After a few more aisles, I nearly passed out. We decided to leave, my husband quickly making his purchases. He headed out to get the car so that he could pick me up at the exit. My family and I decided I should go to a nearby walk-in clinic.

Upon arrival at the clinic, I felt spacey. My husband and daughter each held an elbow as they escorted me inside where I immediately took a seat. My husband checked me in and filled out the necessary paperwork. When my name was called, my daughter accompanied me in to see the doctor. After waiting a short while, he appeared. After asking me questions, and listening to my replies, he asked me to follow his moving finger with my eyes. I did okay although I felt myself struggling a bit. The doctor then asked me to stand and walk towards him, which I did with some hesitation. After I sat down, he advised us that I might be having a stroke. I must admit, strokes never come to mind when I feel something might be awry. Heart attack, maybe. Stroke, never. And yet two of my brothers have had strokes, serious ones, from which they’ve thankfully recovered.

ER (TV series)

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At the doctor’s insistence I went to the nearest ER. I think my husband and daughter were somewhat alarmed as we drove to the hospital near my daughter’s new apartment. I was going to the same ER I’d taken my daughter to in February, when she suffered from an unremitting migraine headache. I think I felt relieved that I might finally discover why I wasn’t “up to snuff.” I was really sick of feeling sick!

Unlike the lengthy wait my daughter had during her prior visit, I bypassed much of the bureaucratic mumbo-jumbo because I was a possible stroke victim. It didn’t help when I burst into tears because I couldn’t remember what day it was when the receptionist asked me. I turned to my husband for help, crying as I asked him what day he’d arrived. Even as I lay on the hospital bed answering the doctor’s questions, I felt I had to will myself to relax, taking my time to mouthe the answers.

Treatment began with forcing fluids into me intravenously, along with a medicine for nausea. After that there was an EKG, cat scans of my brain, and abdomen (I’d felt a sharp pain when the doctor’s hand compressed my side), and a chest xray. I’d also given them a urine sample. Happily, all tests came back negative for a stroke, heart problem, appendicitis, or anythingelse. And by the time the fluids had made their way throughout my body, I was feeling much better. So in the end I was probably suffering extreme dehydration brought on by my bout of food poisoning, and possibly some heat exhaustion as well.

With my new lease on life, we finally settled our daughter into her new apartment, cleaned out the old one, assembled a treasure trove of stuff for her to cart off to Goodwill, and transported a nominal amount into her storage unit for safekeeping. The last 2 nights my husband and I were with her, my daughter and I were up Saturday until 4 a.m. putting things away. On Sunday my husband fell asleep on the air mattress (not the old one, but a new one) at 2 a.m. I remained up again with my daughter, laying down for just one hour before getting up to prepare myself for the trip home to Seattle. Grateful for all my husband and I had done, our daughter tumbled contentedly back into bed after our car drove away.  

I’m sure you’ll understand now why my daughter and I agree that “you should let the bedbugs bite.” It makes life a helluva lot easier that way…

 

Halloween Parade 2007: Bedbugs!

Image by LarimdaME via Flickr

 

you think?…hugmamma. 😉

cicadas, food poisoning, and bedbugs…???

Moses Pleading with Israel, as in Deuteronomy ...

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It was like the plague of locusts as foretold by Moses to the Pharoah, if he did not allow the Hebrews to leave Egypt. Wouldn’t you know that at the time we needed to undertake my daughter’s move from one apartment to another, made monumental by having to sanitize everything first, the cicadas would have to rise from “dead?” Evidently before the adults die they bury their eggs in the ground at the foot of a tree, and they all hatch 13 years later.

When we lived in Connecticut more than a decade ago, it was somewhat charming to hear the cicadas chirping outside our bedroom window at night. But I was not prepared for their dive bombing antics while we attempted to move stuff in and out of both apartments and the storage unit. My daughter and I had to hope a cicada wouldn’t fly into our ears or mouths as we weaved in between their flight paths. Nor was it fun to try sidestepping their seemingly dead bodies which lay everywhere, in the parking lots, on the walkways, on stairs, and most definitely forming welcome mats outside the apartment doors. Some were dead; others would suddenly take flight scaring the bejesus out of us. Even as we removed bins and garbage bags filled with my daughter’s furnishings from her car, we were waving our arms frantically so the cicadas wouldn’t find their way inside. One did. I had to kill it because it kept trying to fly at me.

A pair of Greek cicadas

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For a month or so, cicadas were everywhere, in town, in neighborhoods, at malls, at grocery stores, at restaurants…everywhere! The buggers crawled up sides of buildings, houses. They seemed to occupy every tree and bush. Bumping into one accidentally would ensure being bombarded by cicadas not keen on being disturbed. It was my theory that if there were breezes, the insects remained in trees, but since that was few and far between in the torrid mid-90 degree temperatures, the cicadas preferred to find respite on the cool concrete of nearby structures. So it became us against them, as to who had the right of way in the buildings. Their sheer numbers made them mightier it seemed. We could hear the lone shriek here and there as women, us included, came under attack.

Thankfully, the cicadas were taking their leave of earth toward the end of my stay. Their numbers seemed to be dwindling. Since I’ve been home, I’ve not heard my daughter speak of them anymore. But she has assured me she doesn’t plan to be living in that state 13 years from now. Know what? I’ve already told her she’ll have to get her next boyfriend to help her move, whoever he may be. I’ll definitely be too old to repeat this once-in-a-lifetime experience. She laughed; so did I. Hmmm…

I mentioned the heat. Unless you live in the south, you don’t know what hot is. While the warmth was a welcome relief from Seattle’s wintry climes, I felt like I’d gone to hell, bypassing more pleasant destinations like Hawaii or Florida. It was wonderful dressing in shorts and flip-flops every day. But feeling the need to take baths several times daily was not joyous. The heat was made even more unbearable by the equally high humidity. But riding high on adrenalin, my daughter and I were not deterred from our task. Until another predator came calling, an invisible one…salmonella.

 

Salmonella typhimurium invading cultured human...

 

I’ve had my fair share of food poisoning episodes over the course of my 61 years, none worse than when my daughter and I visited NYC years ago. She was enrolled in a summer dance program at a well-known performing arts high school near Lincoln Center. Unfortunately the name escapes me, it’s so famous. I jest. It really is. I think Broadway and Hollywood celebs have attended it. Anyway…I took my daughter and a fellow student dancer to dinner at a local Italian restaurant. The food and conversation was great. As I downed forkfuls of one of my favorite desserts, a cannoli, it seemed the ricotta cheese filling was runny. It seemed odd, but I didn’t stop eating it. Huge mistake for which I paid dearly hours later.

Rather than spending the night in bed, I was in the bathroom relieving myself of every last drop of that rancid cannoli. Finding no reprieve I finally had to call a taxi to take me to the nearest ER. Vomiting blood scared me into leaving my daughter alone in a hotel room sound asleep. Fortunately my good friend Katie and her teenage son were in the same hotel, coincidentally deciding to visit NYC that weekend. So I alerted her to my situation and asked her to be on call should my hospital stay be longer than I hoped. As it turned out I was totally dehydrated, and the blood was from having aggravated my stomach tissues with all the vomiting. Intravenous fluids and rest got me back on my feet so that I was able to walk back to my hotel, a few long blocks away.

Returning to the present bout with food poisoning, my daughter was the first to begin vomiting and so on. She literally sat on the floor, head nearly in the toilet bowl, spewing forth everything she’d eaten within the last 24 hours. It seemed to go on and on. I was concerned that she’d become so dehydrated, that I asked several times if she needed me to take her to the ER. Having already been there, done that when I was with her in February, my daughter was not inclined to repeat that long, drawn out, 7 hour scenario in the hospital. Thankfully she started feeling better probably a day-and-a-half later. Knowing she needed to maintain a balance in her electrolytes, I got her Pedialyte juice. Once stabilized, she began having broths, soda crackers, and eventually more solid food. Meanwhile, I pushed on with cleaning and moving stuff, as my daughter lay resting. Unfortunately I didn’t escape her fate. As she seemed to be on her way to recovering, I took my turn at the toilet bowl. And then I was laid up in bed as well. We were two miserable human beings as we lay amid the mess in her old apartment.

You’re probably wondering why we opted to sleep where the bedbugs were rather than in my daughter’s new apartment? Well, remember the repairmen? This is where they come in, but that’s another chapter. So go have some coffee, a bite to eat, a snooze. But come back later…

and i’ll tell you another story…hugmamma. 😉  btw…i remember the name of that high school in nyc…la guardia performing arts high school…no memory loss here…just delayed…ha, ha.

medical help updates, the wsj

Have accumulated some Wall Street Journal articles that have medical updates which might prove helpful, whether for you or someone you know.

“How Life’s Details Help Patients – Personal Observations Provide Doctors With New Information to Aid in Treatments” 

Project Health Design is researching the benefits of patient input in the treatment of their illnesses. Unlike my attempts at self-diagnosis, the use of smartphones and wireless monitoring devices are important tools used in tracking patient information. Nikolai Kirienko suffers from Crohn’s disease, “an inflammatory digestive disorder.” Thirty years old, Kirienko has had surgery 6 times in 6 different hospitals. Throughout, he kept an electronic journal. His observations helped “avert disaster on several occasions. Once, as he was being rolled into the operating room, he noticed swelling in his fingers that he recognized as a sign of a blood clot, of which Crohn’s patients have a higher risk. He had suffered two clots in the past and recorded the symptoms in his journal, which he says ‘gave me the confidence’ to insist on delaying the surgery.” As a result of logging his own personal data, Kirienko initiated the idea for Crohnology.MD. Researchers are working with Berkeley undergrads on Kirienko’s project which “will let Crohn’s patients with a smartphone track daily digestive symptoms and sleep patterns along with signs of anemia, depression and weight loss that could signal a worsening of the condition, which affects 600,000 Americans. Known as ‘observations of daily living,’ the data will be charted, along with lab results and other measures, to create visual trend lines on a website–and viewed by patient and doctor.”

Project Health Design has involved other academic medical centers: asthmatics are using smart phones to track their symptoms, medications and physical activity; mobile devices are being created to help parents track “the progress of pre-term low-weight babies. At San Francisco State University, researchers are providing smartphones to overweight teens to help them monitor physical activity, food intake, and mood changes, to see if it can help them overcome obesity.” Collecting the data obtained, PHD teams are integrating it into personal health records so that physicians can follow patterns which might forewarn of health problems. PHD’s national program director, a professor at Wisconsin-Madison School of Nursing, Patti Brennan explains “We don’t want to track every missed footfall, but we are making it possible for patients to record what they felt was important, and what they wanted the doctor to know,…”  PHD researchers at the University of Massachusetts Medical Center helped design a handheld electronic pain diary for patients. Recalling the intensity of pain was easier at 2 hour intervals rather than on a daily basis. So they entered their observations by touching the screen on the device over a period of 3 to 4 days. ” ‘To take care of someone with pain, a doctor really needs to know what the experience is like over several days, and to know things like how pain interferes with sleep.’ ” according to Dr. Roger Luckmann, the physician directing the project. He is working to develop a commercial version.

Following are websites that allow patients to enter daily health data and observations that provide useful feedback to be shared with their physicians.

  • The Carrot.com – Online journal lets users track 30-plus health factors including weight, food intake, energy level and exercise and input data from an iPhone. Produces reports that track factors together, such as exercise and mood.
  • PatientsLikeMe.com – Offers surveys about diseases, conditions, treatments and symptoms. Users can chart health over time and compare progress to patients with similar conditions.
  • MyPyramidTracker.gov – Government-sponsored site lets users enter dietary information and exercise. Provides picture of food intake vs. activity level for several days or up to a year. Compares daily dietary information and exercise to current guidelines.
  • Keas.com – Offers tools to track personal data and health plans to manage weight, chronic conditions, depression or pregnancy. Users can sign up for condition-specific care plans such as headaches and keep diaries on headache triggers.
  • RevolutionHealth.com – Provides health trackers for blood pressure, blood sugar, pregnancy weight gain, pregnancy temperature, exercise.
  • Baby-Connect.com – Lets authorized users on iPhones, iPads, ipods or website track daily information on infants including food intake, diaper changes, sleep, mood, growth milestones, medications and vaccines.
  • HealthButler.com – Preventive health information service lets users track healthy habits and compliance with preventive health measures over time; links screening and preventive history to Google Health personal profile.    

“New Hope in Fatigue Fight”

“Researchers said they had identified a family of retroviruses in patients with chronic fatigue syndrome, opening up a potentially promising new avenue of treatment for a debilitating disease that afflicts as many as four million Americans and 17 million people world-wide. The finding will likely spur patients with the condition to seek treatment with drugs used to fight HIV, the virus that causes AIDS. Although HIV and the newly identified virus group are different, they are both retroviruses.” If chronic fatigue syndrome is a virus, then it goes a long way in legitimizing the complaints of its victims. Since its debilitating symptoms “wax and wane…patients say friends, co-workers and even family members don’t believe they are really sick. Studies finding a viral connection with the disease would completely transform how the illness is treated and viewed.”

A retrovirus called XMRV may be related to CFS. Both may be members of the MLV, murine leukemia virus-related viruses, family. The October issue of the journal Science reported a research conducted at the Whittemore Peterson Institute “found XMRV in a majority of fatigue patients.” However a more recent report by the CDCP, Centers for Disease Control and Prevention found no evidence of XMRV in CFS patients. “…a large-scale clinical trial testing HIV drugs against the ailment isn’t likely” until further scientific evidence is developed linking the virus to chronic fatigue syndrome. Drug companies Gilead Sciences Inc., and Merck and Co., Inc. would proceed with testing once more proof is secured.

Doctors and patients are already testing the connection between XMRV and CFS. Fifty-six year old doctor and chronic fatigue syndrome patient, Jamie Deckoff-Jones, “has been blogging about her experiences and those of her 20-year-old daughter. Both tested positive for XMRV and are taking a combination of three anti-retrovirals.” Where a year ago Dr. Deckoff-Jones would get up for short periods of time a day, after 5 months on the drug, she was recently able to attend an XMRV conference in Reno. Her daughter, meanwhile, went to a party and is enrolling in community college. “This is all very new, and there is no way to know if improvement will continue,…but we appear to be on an uphill course.”

Comforting Children Without Pills and Shots

It seems alternative medicine is becoming acceptable to mainstream medicine, not only for adults but for children as well. “With seriously ill children often taking so many medicines, parents increasingly are asking for nondrug treatments–such as meditation–to help their kids cope with drug side effects or symptoms of conditions from asthma to cancer. These ‘complementary’ medicine strategies are not meant to replace conventional medicines or procedures but to be used in conjunction with them to combat issues such as nausea induced by chemotherapy, or the stress and anxiety of being sick and in a hospital.” Pediatrics professor and head of the Center for Integrative Medicine at Wake Forest in Winston-Salem, N.C., Kathi Kemper studies the mind-body connection. In 2008 she found that live harp music helped 8 premature babies gain weight. “To figure out what was going on, Dr. Kemper’s group put devices called actimeters, which measure very small movements, on the legs of the infants and found that those babies who were exposed to the music were alert and paying attention compared to those in a quiet room or getting the usual care. …’music helps them sleep and be less tense,’ …Soothed babies exhibit fewer tiny muscle movements compared with more tense babies, which reduces the amount of calories they burn.”

Dr. Timothy Culbert, medical director of the integrative medicine program at Minneapolis-based Children’s Hospitals and Clinics of Minnesota, one of this country’s largest hospital-based, pediatric complementary medicine programs. Culbert feels “Pediatrics as a profession needs to catch up.” He and a team of colleagues are on the verge of launching a study to examine further the use of nondrug coping skills for kids with cancer. The study is being launched in 4 hospitals here and in Canada. The “Comfort Kit” had been designed by Culbert’s team years ago to teach children “deep-breathing relaxation techniques; aromatherapy, in which patients inhale chemicals produced by plant oils; and acupressure, a variant of acupuncture with pressure applied to certain points in the body.” In a study with 150 kids who had surgery “87% said the techniques helped them cope with pain after the procedure. Another study conducted last year found that the vast majority of kids with cancer reported that acupressure helped relieve their feelings of nausea.”

Alternative medicine can be very useful in supplementing a patient’s medical treatment. ” ‘If it’s a way of coping, I say go for it, because it’s safe,’ says Dr. Kemper. Families just need to be cautious if a therapy has side effects, is costly or is used instead of a therapy that is known to be effective, she says.”

I agree, go for it!