Smiling face, strength in trials, unflappable peace … that’s the countenance I’ve always wanted to show publicly. It wasn’t always difficult to do – living in denial, running from reality, all those those things make it easier to smile in the face of adversity. I’ve only in the last few years learned how destructive that can be … how much more difficult it makes healing, and re-integrating …

In the same spirit that I shared my past difficulties with you, I’m going to share those that weigh on me at this time. It will help to explain why I’ve spent such long stretches without blogging …

After the events of last fall, I returned home from camp, and entered into one of the most difficult winters of my life. You now know a bit about the house, and my long time readers know the series of events that happened last fall. Those are not all of the factors which were in play, but some of those stories will be told at a later time.

Still in shock over the hammering blows of my son being missing, the burglaries, and so on, we moved back into the farmhouse, and spent our third winter without central heat. We were in serious financial difficulties, and the approaching holidays only served to accentuate our position. It was to be our first year without a reveillon, and I wasn’t even up to putting up a Christmas tree. We sent Dougie off to spend the holiday with his brother, and Doug and I turned down the lights so that we wouldn’t be surprised by unexpected well-wishers who didn’t realize that there were to be no parties that year. Doug and I sat the in cold kitchen, trying to stay warm in front of a wood stove Darian had found for us, and ate cheese and crackers until bedtime.

That set the scene for the rest of the winter. I disappeared into the bedroom, settled into the heated waterbed, and proceeded to try to get through the winter. It wasn’t easy. It got to the point that I wouldn’t leave the room without an urgent reason … calls of nature, doctors’ appointments … I let go of my Red Hat meetings, stopped keeping or making hair appointments … in short, I turned into a recluse. I was not able to blog about what was going on … and what was going on filled so much of my awareness that I couldn’t focus on anything else. I became incapable of maintaining any sort of public image.

I was afraid for my own state of mind. Grabbing my courage with both hands, I wrote my PCP a letter, trying to explain what was happening. He replied by reassuring me that he wouldn’t dismiss me, and that we would talk at my next appointment.

He kept his word, but his talk consisted mostly of trying to get me to “see someone else.” I wasn’t willing to do that – by a long shot – but just the idea that there was someone, a real live person, who knew what our situation was, made things far more bearable; it seemed to act like a psychological safety net. With some serious difficulties and very dark temptations, I made it through the winter. I expected things to improve once the warmth of spring made its appearance, but they really didn’t. The events of the last fall, and situations at home, had just simply been “too much.” I finally understood that I wasn’t going to get out of that one by myself. The knot at the end of my rope had come unraveled.

By early spring, still in bad shape, I wrote to my PCP for the second time, briefly, asking about the person he had wanted me to contact, and voicing a few concerns about seeing someone nose to nose … since I wasn’t at all sure that I would be able to really be upfront with some person I don’t know staring at me. When I saw him next, he told me: “I got your email, but I didn’t read the whole thing. I just glanced at it.” … And then, to make sure that I understood exactly what he was really saying, he repeated it. With the frame of mind I was in, it was like a punch in the gut. All winter, I had clung to the idea someone knew, someone understood … only to discover that it had all been a fantasy. Although things were warming up outside, I hit rock bottom on the inside.

Alone again … the deep dark thoughts that had haunted me all winter renewed their assault – with a vengeance.

After a few very scary months, I sent an email enquiry to the person my PCP wanted me to see. He was very kind, and seemed to be genuine in his concern. After several email exchanges, I tentatively allowed him to set an appointment … it ended up being on my husband’s late March birthday. As the date approached, I became more and more anxious, and less and less confident that I would be able to do more than just sit there silently …

… but I got lucky. Dr. K asked all of the right questions … with amazing acuity. A large part of my story came out without having to do much more than nod; it was traumatic, but it was also a relief beyond my capacity to express. With each successive visit, it became less and less difficult to communicate openly with this amazingly intuitive young man … until I finally found myself looking forward to the next appointment.

Now, that, my friends, was a real shocker for me! :o)

(A little aside here … after the first few visits, Dr. K got in touch with my PCP, who was suddenly very concerned and solicitous. Why did it take another person to tell him what was happening in my life before he would actually hear what was being said? Although I like this doctor, and am still with him, I now know that it’s pointless to trust him with anything but purely medical concerns. For those of you who are in practice, let me tell you that it’s a very scary place to be … when all you have is a PCP, and your world is caving in around you, and you can’t even count on him to at least hear what you’re saying. Getting the story from another professional, and only then reacting with concern, will not fool your patient — it will only add another brick in the wall of the doctor/patient relationship.)

The next real shock came when I realized that it was becoming less difficult to drop my happy mask, and with that came the willingness to spend more time outside of my room. Over the summer, and into this fall, things have slowly improved, and although I’m facing another difficult winter in this house, we haven’t had a course of ugly events to weigh us down in advance … and now, there really is someone who knows what’s going on, and who is intuitive – and supportive.

Other things that helped get me through the winter … were my online friends, Ramona, Joanie, PK Eagler, the Merry Laundress, and GC George, who all played Facebook Scrabble with me through the entire winter. It was a warm, wonderful distraction from my icy cold room. Joanie also helped in a very real way by coming back down to the area from Bangor, and spending some time with me. We spent several wonderful evenings since this past spring, visiting in the lobby of the hotel she stays in … even if we did both spend them online, side by side. Can’t wait to see one another … and then still communicating over the internet while sitting at the same table! Not really, but close …

I also want to give a very special thank you … to a very special friend. SmallTownDoc and I chatted virtually every morning, and every night, and his friendship unknowingly (at the time) got me through the winter. He became a “place of refuge” … and a very close friend. Who would have guessed that two such unlikely individuals would ever become such close friends. His beautiful little girl thinks that her daddy has a lady trapped in his computer … ;o)

Now that I’ve broached the subject, I won’t ever have to avoid mentioning it again … so with this post, I’ve kicked another brick out of the blog wall. There are a number of subjects that I would like to share with you along these lines, but this post had to come first.

I believe that the stigma of needing a therapeutic intervention, and medication, when looked at from the second person, is really an innate fear of “going there” ourselves … and perhaps not wanting to be reminded of our own “black, dark places.” From the first person, it’s a struggle to overcome the stereotypes we’ve associated with needing therapy and meds … of beginning to be comfortable enough with ourselves to be able to admit our needs openly. All the way around, it’s a venture into an unknown, and often terrifying, place … a place where you have to begin to trust another person enough to be able to bare the most disabling, humiliating, and frightening illnesses of all … those that deal with the center of who you are: your mind.

My nephrologist is a very kind fellow from Bombay, India. He has a soft, calming voice, and a handsome smile. The first time I ever saw him was in October of 2003, as he was doing rounds on my hospital room mate, who was a patient of his. She was a cute LOL, and was painfully swelled up from CHF; she was having an awful time of it. She looked at him with worshiping eyes while he was there, and said: “I love you, Dr. M. You know that, don’t you?” His handsome face turned red, but he just smiled at her, and kept talking to her in a soothing way. I never forgot that. When my own nephrologist became a hospitalist early in 2007, it didn’t take me too long to look this fellow up. Today, I’m really glad I have him.

This afternoon, when he came into the room, he was somber. He told me that he’d been speaking with my primary care physician, and asked if I’d heard from him yet. I told him that I had. He asked me what I thought about what I’d been told … and for me, that’s a bad question. Although I think (sometimes,) I’m not always able to express that verbally. Gimme a keyboard, and I’ll go to town – but please don’t ask me to talk! I’m not sure what I replied, but it was some of the usual drivel I use as a stop-gap when I have a brain freeze. He recognized it for what it was, and took charge of the conversation – to my great relief.

He quietly explained that there are circumstances under which they wouldn’t be overly concerned about a creatinine of 3.8, but that for my situation, it was time to begin making decisions. We discussed both hemodialysis and peritoneal dialysis. He also asked about placing my name on a transplant list, and he looked a little surprised when I told him that I didn’t want to do that. He asked what my reasons were, and I explained as well as I could. This isn’t the right time, but I will blog about that in the near future. It’s something I’ve given a lot of thought to.

By the time the visit was over, we had decided that I would try peritoneal dialysis. When I asked, he explained that it has a higher morbidity for the first month or so, due to a higher incidence of infections, but that afterward it was better, because it wasn’t as hard on the heart. I will be able take care of it myself at home rather than go to the dialysis center, and will be able to retain my independence. He is going to set me up with a nurse who teaches PD, and with a surgeon who will place both a port in my abdomen, and also a fistula in my arm, just in case. I’ve had abdominal surgery, and there’s a question of how well the PD will work because of possible scar tissue.

And now … here is an idea of what my poor docs are up against. *blush* He gave me two orders for lab work, and asked me if I would have one of them done today – to check up on my potassium, since it had been unusually high. There’s a lab right next to his office, so I took care of it right away, on my way out of the building. I then drove to meet my dear friend Joanie at a local restaurant for an early supper. The angel drove all the way down from Bangor – a three hour ride – to see me today. I had my son, Dougie, with me, and I told him: “I’ve just had my lab work, and won’t have any for a few more weeks. This is something I’m not going to get to do much in the near future, so I’m going to cheat and have some cheese fries while I can!” The cheese fries (with bacon, no less) at that particular restaurant are absolutely to die for. I could almost taste them before I even got to the restaurant. So of course … I was a bad girl, and munched big plate of fries. They were gooooooood! >;o)

We came home afterward, and in about an hour, the phone rang. The answering machine caught the call. It was one of the nephrologists telling me that I’d had an abnormal lab result today, and to call right away. *sigh* I kind of gritted my teeth, held my breath, and called. Apparently my potassium was “dangerously high”, and she wanted me to take some Kayexalate immediately. Well, it was a new prescription, and I’d only had it once so far – but that single experience was quite enough for me to feel my gut begin to roil as I thought about the prospect of trying to down some of that nightmarish grit. She said – “How much do they have you taking?”, and I told her that I was supposed to 15 grams every Friday. She said: “No no no! That’s not enough! I want you to take 60 grams!” OY! Do you realize what 60 grams LOOKS like? Worse … do you realize what 60 grams of that stuff goes down like? *ugh!* One sip and you feel like you just landed face first in a pile of sand, 2 sips and your tongue and teeth are wearing fuzzy little sand coats and ties … 3 sips and the stuff is fighting its way back out of your tummy! I must have made a really pathetic whimper, because she went on, urgently, telling me that with my potassium that high, I was in danger of having my “heart stop.” I didn’t say anything to her, but by then I was picturing my plate full of cheese fries … you know, the one I’d eaten after the lab work was done. Ouch! And so, I took my punishment like a good girl, and will dutifully report to the lab in the morning to let the vamps squeeze more of that red stuff from me so that they can find a reason to feed me yet more yucky stuff! ;o)

And to tie things up for now, my personal plans for the next little while are as follows …

I’m going to try to blog about this as it happens. Up until now, I haven’t wanted to do that except for during extraordinary occasions, but this is different, and I want to share. Perhaps we’ll start hearing from others who are going through the same stuff.

Also, there are an awful lot of things going on in my life besides the ESRD. I’ve played my cards pretty close to my chest in the last few years, but I’d like to try to break out of that. There are other adventures that are ongoing, and others that I’m just now beginning, and I would like to share those with you, too.

So – fair warning. Those of you who can’t take the nitty gritty may want to find your reading material elsewhere for a while. There will still be silly eye benders, funny stories, garden photos and more, but there will also be a bit more patient blogging than I’ve been willing to do in the past … and more of the real stuff that’s ongoing in my little part of the world.

Lots of big changes in the wind …

When I saw him on Monday morning, my new doctor refilled my hypertension medication, and gave me something for my UTI. Well, I know that if I stop taking that particular HTN medication for more than a few days, and then restart it, it always hits me really really hard, and I spend most of my time sleeping until I start getting used to it again. Well … that, and the fact that my worry about the dosage on the antibiotic was right on … got me into deep doo when I went for my stress test.

When I got to the hospital, I warned the fellow that was about to do the test that I had just restarted an HTN med, and that I was light headed. Fine. No problem. He tried taking my (usually skyrocketing) blood pressure, and he couldn’t hear it. He said: “I can see it, I think, but I can’t hear it!” … He went out to get another person to come in and try, and she said the same thing. They then brought in the cardiologist on call … and he said: “Hmmm. I can’t hear it. I think I can see it, but I can’t hear it.”

By this time, I wished I’d either stayed home, or not taken the darn pills. The cardiologist scratched the test, and decided that he wanted a nuclear stress test instead, and for me to have it done today. In the meanwhile, he sent me down to the ER (augh!!!) because he wanted them to give me an IV to bring my blood pressure back up. I kept telling everyone that it was fine … it would pass on its own, it was just because I was just starting these particular pills over again. No one seemed to care about that. I’ve been through that scene at home on various occasions over the years since I’ve started with that med … it’s nothing new. I was not happy to end up back in the ER again.

Anyway, once I was down there, they started the IV, and she put it inside of my right elbow. I told her as she did it – “I’m glad I’m not staying, because I would not want it to be in that spot if I were!” That’s when I jinxed myself, methinks.

After she set me up, she said: “The doctor will be in to see you shortly.”

If I could have sat bolt upright, I would have. I squawked: “WHAT? I’m not here to see a doctor. I just SAW a doctor!”

She replied – “Well, everyone who comes into here sees a doctor.”

And that was that.

Anyway, I became a bit of an attraction in there, since I’d been there the morning before, if you recall. The fellow I’d seen then came in and wished me well … so did the nurses.

My heart skipped a beat as I saw Dr. MacCauseland walk in. I’m actually going to name this guy, because he’s got to be one of the nicest people alive. It was the second time I’d ever seen him. The first time was also in March, back in 2004. I had just been diagnosed with HTN and CRF the October before. I had developed a rather nasty kidney infection, and my nephrologist sent me to the ER … where I ran into Dr. MacCauseland. He admitted me that time, too. Lovely man. *cough* ;o)

The long and short of it … my already high creatinine had climbed into the 4’s (which I’m sure was due to the antibiotic,) and no one wanted to take a chance that the hypotension was due to the pills … and so dear Dr. MacCauseland told me:

“I don’t want to let you go home, and I’m conservative about this sort of thing.”

I reminded him that it was the second time he’d done it me … I’m not sure how conservative he really is! *LOL*

Once I realized that I wasn’t going to talk my way out of this one, I looked ruefully at the needle inside of my right elbow … and caught the next nurse who came in, a lovely gentleman, and asked if he would please be kind enough to find someone to move that darn thing into my hand. He gladly accomplished the task himself. I was just about ready to be shipped upstairs.

There was stomach churning moment when they wheeled me into the room which is immediately next to the one I ended up in on that fateful October 2003 day when they admitted me for the 280/160 blood pressure for the very first time. I was there for almost a week. If I were allowed to look out the window, I’m sure I would see Central Ave. in Dover, since that’s what I could see when I spent a lot of long moments staring out of the next door window. However, they’ve given me a cute, special little yellow bracelet which means I’m not allowed to run around without permission.

They plopped me into a bed that moves by itself (ack!) … and put little boots on me that puffed up and gave me foot massages all night. That part, at least, was nice. So were all of the superheated blankets, because I’m awful chilly-willy. Thus began a long, long night. You never get to sleep in places like this.

They’ve done bloodwork every 6 hours, and this morning they did a nuclear stress test, a fifth EKG, and an echocardiogram. My creatinine is back down into in the 3’s, and I’m raring to hit the trail! I’m just waiting on the lovely Russian lady hospitalist to spring me.

This was quickly written … on a WIFI connection which is almost non-existent. I haven’t done my usual reading and re-reading, so please excuse the typos. When I wrote the “Testing the Waters” post, I had no idea that this was going to be a series. *sigh* ;o)

—

Quickie addition …

My lovely doctor came in and told me that she would like me to stay until tomorrow morning to make sure my numbers continue to go in the right direction, but since she’s sure that she wasn’t going to sell me on that one easily, she would let me go under certain conditions. YES! :oD

I’ll do my very best to be a good girl … just let me out of here! *LOL*

Anyway … I called home to ask for a ride, and was told that someone had sent me an edible greeting (bouquet?) of some sort. He told me that he can’t find a name on it. Since I’ve only blogged about what’s happening, and none of my family or local friends know, I suspect it’s one of my very kind, thoughtful readers. I wish you’d let me know who you are! At the very least, I want to say thank you. That’s awfully, awfully sweet of you. Unless I’m going out to eat, fruit is my main fare … so you either already know me pretty well, or you made one heck of a good guess. I assure you that I’m going to go home and demolish the lovely piece! :o)

Next post will be from my nice warm water bed! Now I have to catch up on my school work … I have a really gnarly lab to pass in, and a midterm to take. I’m afraid that I’m at a disadvantage, because I’ve missed both of my live lectures this week. Ah well … I’ll have to do a bit of catching up!

I usually start my day very slowly. I might be awake really early, but I’m not running up and down the stairs. This morning, I woke up at 5:30, and tried to go from 0 to 50 right off, and it didn’t work well. That, added to the fact that I was getting ready to do something which made the rest of my hair want to go white … made for an interesting morning.

The stairs to the bathroom always leave me winded, and this morning, it seemed a bit worse than usual. I blamed that part on the hour, and not being able to lounge for the better part of the morning without having to get too active. It was not only a bit worse than usual, I guess … it was a lot worse than usual. I was also nervous. Made for a bad mixture. Worshiped the porcelain god for a while … it was an inauspicious start to my day.

Once I was finally presentable, I sat with my lap top, in my PJs. At 6:30 I thought – “I really should get ready to go.” At 6:40 I thought – “If I don’t get going soon, I won’t be going at all, because I won’t have time to get dressed.” At 6:45, I was still sitting there, with 15 minutes left before I had to go out the door. I wasn’t dressed, didn’t have my contacts in … by this time, I was having a bit of a problem with “fight or flight.” Flight was winning.

An email made a chiming sound as it hit my inbox, and I looked to see who it was from – one of my very kind blog friends, with just enough empathy in it to tip me back over in the other direction. I got up, dressed … and tried to leave. No car keys. I investigated my husband’s pants pockets … nope … I finally had to wake my son … yup. Car keys in hand, I headed out into a crisp, frosty morning, and almost busted my kiester on the ice before getting into the car. When I got in, I realized that I was encased in ice – there was no seeing out of any of the windows. I had to get back out and scrape windows, hanging on to the car as I did, because the entire area was icy and uneven.

Heart pounding, I got back into the car, started it, and saw that the gas was on empty. Folks … I almost went back into the house at that point. When that car says it’s on empty … it’s empty! I’m one of those really anal people who can’t stand the idea of being late, and I always leave myself a lot of time … however, this time I had waited until the last minute to dress, gone on a key hunt, had to scrape the car … there was not going to be enough time to stop in a gas station. I just had to hope I could get to where I was going.

The gas did get me there. It’s a huge building – full of physicians’ offices and labs. I’ve seen two other physicians there in the past, and had an idea of the layout, but knew that it could take me a while to find the right place. I arrived at the desk of the right office without an extra second to spare. Not the way I like to do things!

Of course, I was given the usual forms to fill out, but before I could get a page done, I was interrupted by someone who wanted a specimen, since they knew I had a UTI from my phone call. That done, I was immediately ushered into an exam room, weighed (10 pounds less than I thought I weighed! w00t! ;o) … BP’ed (not bad at all! I think it was about 155, but the diastolic was higher than usual when my BP is that low) … and allowed to continue filling out those awful forms. I got another two words written … when there was a tap at the door.

My moment of truth had arrived! *LOL*

The gentleman who walked in was handsome, well presented, and spoke with a lovely English accent. The first impression: he charmed me off my feet! Good start. Although my first impression was never shattered, things went downhill from there. He asked questions that I wasn’t well prepared to answer, but I did my best. Answers to some of the questions made him want to do an EKG … and he had one of his nurses do just that. Afterward, he showed me some of the places on the EKG which he didn’t like, and much to my horror and dismay, he wanted me to report to the emergency room, and be quick about it, too.

All I could think was: “Oh poop! Here we go again!” My first visit with the last fellow ended up the same way, only I’d refused to go. It took him 2 days to convince me. *cringe*

Today however, I just did what I was told the first time … sort of in a haze … but I did it. The hospital is 1/2 block from the offices … so it was a quick jaunt.

The nurse was kind enough to put in the line in the back of my hand instead of the inside of my elbow. The latter wouldn’t be a problem for a few hours, but it’s an absolutely rotten place to put an IV if you got yourself a conscious patient who’s going to have to hang around for a while.

They did another EKG, hooked me up to a monitor, did chest X-rays, and a renal ultrasound. I have to go back tomorrow for a stress test. I’m also supposed to call the nephrologist’s office … (”Dr. Simper is the one who replaced Dr. ExNephrologist, and we want you to make an appointment with her …” *sigh*) a Cardiologists’ office, and my new Primary care in the next few days.

There was a bit of news that I was surprised to hear, because I didn’t think I had been doing that badly, but apparently my creatinine has gained a bit, more than a full point and a half, since my last labs in November. The ultrasound showed no blockage this time, and that led the ER doc to tell me that he thought my kidney was deteriorating. That wasn’t particularly reassuring.

Anyway, I dragged into the house late in the afternoon, and sweet hubby ran out to get my prescriptions – for the HTN, and for the UTI. My only concern now is that I don’t remember what my old Nephrologist told me about that particular antibiotic. During one visit with him, he had said that he thought my other doctors (PCP, and two urologists from different hospitals) were trying to “do away with” me with their choices and dosages of antibiotics. Beginning with an already elevated creatinine, I hope that’s not the case this time.

And so, there you have it. I’ve been seriously considering changing primary care physician since early 2005 … and now I’ve actually done it. My first impression of him – is positive, but how things work out remains to be seen. I need to be able to overcome my panic at the thought of actually getting nose to nose with someone and admitting what’s wrong … and he needs to be patient with me while I struggle with myself to accomplish that.

Now – I climb aboard the rollercoaster one more time. I’d gotten away from doc’s visits and monthly lab work … periodic extra tests … the referrals to specialists … trying to tell strangers things I don’t tell my closest friends and family. Hope this latest ride isn’t too awfully wild …

Thanks for all of the encouragement. I’m still not entirely happy with myself for putting up these two posts, but the feedback has made it all worthwhile.

… but when it came time to actually following the advice, I simply didn’t have the courage to follow through.

Well, in the span of time between that post, and this one – there have been some serious changes … and although I’ve been reserving this particular type of topic for my private journal rather than my public blog, I thought I would try to fill all of you in on some of the changes, their consequences, and decisions that I’ve finally been cornered into making.

First of all, my nephrologist – who was the only physician I was seeing anymore – quit. The last time I saw him was in November. He had a lady with him when he came into the exam room, which was a first … and I immediately knew that something was up, but I wasn’t prepared for what. People, I do not like to see extra, or unexpected, “warm bodies” in the exam room. It makes me want to remove my own warm body from the scene post haste.

He introduced the lady as a fellow nephrologist, and proceeded to announce that she was his “replacement.”

Replacement???

He continued: “I’m changing jobs.”

Puzzled, I echoed: “Changing jobs?”

“Yes!”

I imagined him selling cars someplace in Portsmouth, and tried hard to shake the image out of my befuddled brain as I asked: “To what?”

“Hospitalist. I’m going to be a hospitalist.”

This from the fellow who was so down on hospitalists less than a year before … who bemoaned the direction primary care was taking, and mentioned on more than one occasion: “I used to run into Dr. A**** at the hospital, but now none of them ever go anymore.”

Yah … tell me about it. My long time readers know how I feel about ending up with a hospitalist …

Generally, this fellow did all of the talking during visits, and I seldom had anything to say besides quietly trying to answer his questions. I certainly had never raised my voice, or lost my cool … or, well, you get the idea. This time, I nearly bellowed: “You’ve got to be kidding!!!”

He looked a little sheepish, and admitted that he’d never liked the idea of hospitalists before, but … yadda yadda … he had some good reasons for doing it. I couldn’t fault him … but I didn’t have to like it.

At the end of the visit, he shook my hand and said: “Come to the cafeteria at ***** hospital, and we’ll have coffee!”

Without batting an eye, I replied: “I’m going to take you up on that.”

A momentary flash of surprise showed me that he hadn’t expected that response. *snicker* Actually, that visit ended up being the one in which we focused on him, and I think I did more talking than I’d ever done since I met him – mostly in the form of questions about his chosen path.

I haven’t done it yet, but a bit later in the spring, I will call him, and try to meet with him. He’d never heard of blogs, but I’d sure like to do a podcast interview about his trade of a successful nephrology practice for a hospitalist’s job, and post it on this blog. I hope he agrees! You’ll know about it if he does. :o)

Just as my (now ex) nephrologist walked out of the room, the lady doctor who’d been with him came over for a handshake, and as she took my hand she actually simpered … I tried to control my eyebrows as they flew to my hairline, and attempted to glue themselves into place. The hand she proffered was limp and cold, and made me want to take her pulse. The though that crossed my mind: “Uh uh … this is not going to happen.”

I didn’t allow the desk to make an appointment for me until I’d had a chance to think things through. I thought of going to see a different nephrologist in the same practice … the one my mother-in-law was seeing. She had bright shiny things to say about him, and he sounded like a good person. However – within a month of my nephrologist announcing his departure, this fine fellow did too. He’s now in Texas, nearer to his family.

That narrowed the field substantially. That left Dr. Simper, and one other fellow who was rarely in the office which is nearer to me. I would have to be willing to drive to Portsmouth to see him, and if there were an emergency, I would probably end up with pot luck.

I was supposed to have my visit in February. It came – and went, and I still hadn’t decided on what to do. Meanwhile, my meds were running out on me … and so were the prescriptions.

Deep breathing exercises, anyone? Believe me, they’re not as effective as they’re cracked up to be.

Last week, I tried to fill the real “workhorse” of my hypertension pills. It was past the final date, and the pharmacy offered to call the nephrologist for a refill. I got a call from the nephrologist’s office … they wouldn’t fill it. I hadn’t been there in February, and as far as they could tell, I wasn’t seeing anyone there anymore. Did I want an appointment with Dr. Simper?

Um, no.

The long and short of it – by the time I hung up, I was no longer even loosely attached to any doc’s offices.

That meant no pill refills. It also meant that the UTI I’d had for the last month or so was going to be around for a while.

I considered calling my old PCP and begging them to refill the hypertension meds, but I knew that if I did, he would insist that I come in. Maybe someday, I’ll spell out all of my reasons for not wanting to do that, but for now you’ll just have to take my word that I can’t fully trust him, and I can’t communicate with him, although as I’ve mentioned before, I like him as a person. I’m not saying I’ll be able to communicate any better with anyone else, although I’ll certainly want to try, but there have been so many miscommunications, and things are now so complicated, that I think both he and I would agree that I should look elsewhere.

Over the week, I took stock of my situation. I have stage 4 kidney failure and a UTI, really wild hypertension that the meds don’t always control – the systolic’s been in the lower 200’s off and on for the last week, a PTH that tends to bounce way up, and then way down, other secondary problems … I’ve slowly run out of my meds … and finally found myself without a physician. None. Nowhere to turn.

This was it. The moment of truth. I was going to have to find a new place to go.

Now for the rough part … warning: I’m going to be a bit “naked” here …

I do not not not do well with the physician/patient venue. Baby, I can get on here and write my heart out, but when it comes to the nose to nose stuff, I’m a wilting lily. The very idea of sitting in front of someone who is focused on me, and trying to be open and upfront about the things he needs to know … are enough to make want to run and hide – or worse. If I can write things down for him, great … but then if I have to be there, in the silent oppressive room, as he reads what I wrote … I’m likely to go ahead and have a stroke right then and there, and save him the trouble of having to deal with my issues.

There’s a reason that I feel like that, and now finally I know what it is. I’ve had an ever growing realization since January 8th of last year. The first part of the Emanon’s Journey blog touches upon it, but doesn’t delve into it. I have one more chapter to write before I get to that subject … it’s what that blog is really all about.

They say that knowledge is power, and I’m sure it is. However, even knowledge needs a handle in order to be useful. You have to know what to do with the things that you realize.

A few days ago, I grabbed my courage in both fists, and called a new physician’s office. They told me that the doctor is accepting new patients, but that there always needs to be a “getting to know you” visit first. The earliest date, they said, was sometime in June. I imagined myself with a painful UTI and no HTN meds until June. I started to explain that I had a few extra issues, but before I could get into it, I panicked and hung up.

In shock at what I’d just done, I stood there quivering, squeezing the poor telephone as if it were a poisonous snake, wondering what to do next. I’m telling you, this sort of thing does not come easy for me. After about half an hour, I made myself call the number again, and go through my list of issues, asking if there were a way to have that initial visit just a bit sooner. Humiliated to the core because of the ridiculous, but uncontrollable, shaking in my voice, I gratefully thanked her when she found me a spot sooner – much sooner.

And so – tomorrow is going to be an extremely busy, stressful day. I have to be at the new physician’s office at 7:30 in the morning. I honestly don’t have a clue of what I’m going to say to him. I’m hoping that I can actually go through with it. I need to go through with it. I know that we’re going to be checking each other out, and I find that as the years go by, it’s harder for me to keep a light exterior and bluff my way through that sort of thing. I can’t help but wonder what he’ll think.

Tomorrow is also my husband’s birthday … and the day I take care of the bills … and I also have a midterm this week. Honey, I’m going to need those HTN meds! *LOL*

If I don’t write about how things went, you’ll know that one of two things happened:

1) They didn’t go well …

2) I chickened out …

Wish me luck, eh?

In the last year, the Medical Blogosphere has seen some ups and downs. We’ve lost a few people, gained a lot of people, had bloggers taking more or less friendly pot shots at each other over a variety of issues, been beset by hordes of trolling malpractice lawyers, and taken down the garden path by mere teeny-boppers. We’ve had our blogs plagiarized for financial gain … and discovered that spam wasn’t only meant for inboxes and Hawaiian musubi …

It’s been quite a year. Through it all, we’ve gotten to know one another better, and I think that we’ve become quite a nice little community. We’ve come through a lot … and we’ve pulled together, supporting each other through the bad times. Sometimes though … I think we forget what’s really important …

Over the last week, I heard from two blogger friends; each of the two presented me with opposite sides of the same issue, and both had valid points. What made the situation so intense for me is that I really care for both of them, and just wanted to see things turn out in such a way that no one would be damaged, traumatized … or alienated.

As of this moment, it looks like all three may have happened … and perhaps to both of my friends.

There’s so much that I’d like to say about the subject that I honestly don’t know where to begin …

The basic issue appears to be: physicians – and other medical personnel – engender a level of trust which is above and beyond the norm. In a general way, there’s no doubt about the veracity behind that statement. Many of us have been known to admit things to physicians (or nurses, or ER techs … etc. … ) that we would never consider saying to even our closest friends and family members.

I need to point out that they’re not the only ones, though … priests, rabbis and ministers receive a similar quality of “trust” as a group. If we do a bit more thinking, I’m sure we could add even more groups to the “trusted” category.

That trust, some people feel, deserves some sort of reciprocity, and I agree. When I visit a physician, I want to be certain that he’s the real thing. I want to be able to examine his credentials before he takes it upon himself to stuff me full of drugs, or cut me open to fish around for whatever’s gumming up the works.

I might even be excused for wanting to know how well he did in medschool … and how many other patients with my particular medical problem he’s treated, and how well they made out under his care …

To stretch that even further – I feel that I can also question his character – just as I can the character of anyone I meet, under any circumstances.

However …

I have no business asking him what he had for breakast, his wife’s name, where he was born, what color his toilet seat is, and if he has a gay cousin. It’s none of my business if he has any kids … or if he has a dog, or likes to fish and hunt. That’s part of his private life …

When we see physicians, we tap into their knowledge and capabilities to heal our bodies, or help keep us well … the part of them that we are trusting with our lives should be transparent for us … just as we should be transparent for them as patients. However, they are human beings who have lives outside of what they do for a living. They, like the rest of us, have a right to personal privacy.

And there’s another right that they have – freedom of speech. They can write letters, articles, poems, songs … blogs … anything they’d like, just like the rest of us. We have the right to create blogs anonymously … or through a pseudonym … or to let it all hang out … and so do they. They can even write about what they do for a living. Yes, there are regulations they have to follow – HIPAA, for example, but I’m sure that they know quite well that those who cross that line could end up being hurtin’ puppies.

The only time we can demand identification from a physician who has a blog of any flavor whatsoever is if he or she begins to use the blog in an official way – to practice medicine … give out medical advice … or otherwise begin to sell themselves as professionals looking to do business through the blogging media. Then – they’d better drop the “Anonymous” stuff, cause it won’t cut it.

Are we going to demand that everyone who’s gone into a sensitive profession give up their privacy? Are we really going to try to restrict their freedom of speech? Are we going to demand that they always stand naked before us? “Everyone else can write anonymously, but not you!” And once we’ve done that to physicians, who’s next? Priests, rabbis, ministers … ?

If we’re going to do that, we also need to define anonymity, because putting up a photo and a name doesn’t make a blogger any less anonymous than using no name, and no photo at all. I know quite a few docs who don’t blog. There’s one that I hope to hit up soon for a podcast interview for this blog who had to ask a fellow doctor in the room “What’s a blog?” … the other physician didn’t know either. Anyone with an interest in deceiving people could use his name and likeness on a blog – and unless someone who happened to know who he was ran across it, the blogger could get away with it for quite a while, if he was circumspect enough when creating his posts. A name and a face are meaningless until you meet someone nose to nose … and even then, you could still be deceived.

This past summer, the “Naked Tomato” episode taught me a lot of excellent, but difficult, lessons. One of the lessons which I learned is that Anonymous bloggers are not a threat … unless I allow them to be. I can make them become a threat by trusting them more than the online relationship warrants. In that case, they’re not the threat – I am … I become a threat to myself. I’m not saying “don’t trust anyone online” … there are a few of you out there in blogland who know things about me that I don’t speak about with my own family. The issue here isn’t anonymity – we’re all anonymous to a degree in blogs – the core consideration is trust, and how far to take that trust. Sometimes you reach out to someone, and when you bring your hand back, it’s full of wonderful things – friendship, understanding, compassion … but sometimes, you bring your hand back only to realize that you’re shy a few fingers …

And that’s just the way life is – in any venue.

Personally, I’ve always felt that the benefits of reaching out in trust and acceptance outweighed the occasional disappointments. So far, I still have enough fingers left to hold the goodness that I’ve received from the friendships I’ve made online … and they’ve been considerable.

If you take the time to get to know the spirit of a person – that part of them that transcends their writing, their looks, their faith, their nationality, their age, and even their attitudes … you can begin to get a glimpse of the pure person behind the persona. Get to know them, slowly … develop a feeling for what they are … and that will tell you who they are. After a while, you’ll know who you can trust, and who you should just enjoy from a distance. That they have – or don’t have – a “name” won’t make a lot of difference – since what you’ll understand about them will be so much more than merely knowing a person’s moniker.

Now, I’m not quite done. There is one more facet of anonymity that I feel I should explore, because it also relates to the reason I’m writing this post …

Anonymity is nothing by itself. It’s only what we make of it – or do with it. Sometimes though, what we choose to do with it can be really ugly.

There’s a certain class of people who seem to enjoy hiding in the shadows of anonymity while taking low, crude, unkind and unfair pot shots at other people. They seem to crawl out of the woodwork whenever there’s a controversy of some sort … like the one we’re having now in our little corner of the blogosphere. I don’t know if it’s because they figure that they can do as they please, because no one knows who they are … but they should realize that they’re branding themselves as cowardly snipers. In my own mind … I’ve got them classified as belonging to blog-layer that’s just below comment spammers. In meatspace, they’d be the lowlives who leave nasty spray painted graffiti all over the place.

My recommendation is to ignore them. Delete the comments, and don’t think about them again. If you have WordPress – ban their IP. You don’t need them as readers. Let them go dirty up some other part of the blogosphere with their cowardly vitriol.

It’s really hard to take something like that very seriously, anyway.

And now, my wish for our little corner of the blogosphere is for everyone who’s been hurt by this latest storm to heal, move on … and keep blogging. Sometimes, we just forget what’s important …

In discussing the rather delicate question of whether suicide would be a personal option in order to avoid the anguish of Alzheimer’s, Dr. Schwab questioned:

“[...] would I rather drop dead in an instant, or have a terminal illness that would allow me time to make plans, make peace, say goodbyes. I’ve seen family members go in each way. What I know is that when an uncle dropped dead at age 65 with no warning, his family was devastated. When a brother in law died slowly, it was miserable, but somehow when the end came it was easier to deal with afterwards.”

Along with Dr. Schwab, I have to question which way would be better. My father died very suddenly of a massive stroke … we were not prepared to lose him. 19 years later, I still mourn him … I still miss him palpably. His death left so many things unsaid, so many loose ends. In contrast, my mother lingered with Alzheimer’s for a decade. I finished mourning her years before her body died. When she went, the anguish ended, rather than began … she was no longer trapped in the empty shell that had once been the woman who raised me, nurtured me, wiped my tears.

I don’t ever want to see someone die from Alzheimer’s again – it was agonizing, long, exhausting … emotionally draining. But … we were able to mourn her fully, to tie up our loose ends. My dad … he was there one day, laughing at our jokes, rubbing his big beautiful rough hands together in glee as he anticipated the fun he was going to have with us and his grandkids since he’d only moved to the area a week before … and then, suddenly, he was gone. The wonderful times we were all finally going to share — went with him.

And so, which is best? Dr. Schwab says he doesn’t know … and I certainly don’t know …

If you could choose the way you were going to die, would you have it be quick? Would you rather know ahead of time, and have the time to make your plans, tie up your loose ends? Get everything said?

What about the death of a loved one … do you think a sudden, unexpected death is better, easier? Or is it better to know that you’re losing someone, to have time to say your goodbyes?

Let the blogosphere know what you think – and why. And don’t forget to vote in the poll in the left sidebar … thank you!

I must admit that I’m a frequent visitor, and I’m about halfway through reading his blog from beginning to end, since I only found him sometime last fall, and he’s been building up that amazing blog for a very long time.

On July 5th, Dr. Bernstein outdid himself. He put up a post entitled: Male Circumcision: Should It Now Be A Crime? In the next 17 days, it accrued 441 comments!!! It could have something to do with Blogger, but on the 17th day, the comments suddenly stopped – so to ensure that the conversation was able to continue playing itself out, Dr. Bernstein made a new post on July 25 – More on the Issue of Male Circumcision – and the comments have resumed in the new location.

In an email exchange between Dr. Bernstein and I, he said:

If these vocal visitors represent a general part of the patient population, I think it is important to recognize that and now I have some new insight to tell my first and second year medical students next month. We have never discussed the issue of infant male circumcision with these students in the past. I think it is important, perhaps for the students to simply look at my blog, to see how explosive the issue is to certain patient populations..so that they can be prepared.

What I’ve been able to gather from the comments is that, in spite of the sheer volume of comments, there are relatively few individuals in the discussion. They seem to be people with strong opinions, and in some cases – extreme opinions. I’ve discussed the issue with several men, and none of those I’ve spoken with are against circumcision – so far. I wonder if perhaps the commenters on Dr. Bernstein’s blog may not really be representative of the “general part of the patient population,” but could perhaps only belong to a small, albeit extremely vocal, minority.

I’d like to hear from those of you with an opinion on Male Circumcision – especially infant male circumcision. Are there medical reasons to promote it? Do you consider it to be a form of genital mutilation, or child abuse? I don’t think that my blog attracts the same crowd as Dr. Bernstein’s blog does, and I would like a more balanced view to present Dr. Bernstein and his medical students with.

My regular readers can ignore the following warning …

Nota bene: If you post a rude comment, or use cursing, name calling, religious slurs, personal slams … etc. … your comment will be deleted! I’m not as patient with rudeness as Dr. Bernstein seems to be, and I’m interested in hearing everyone’s polite opinion – all sorts of opinions – but I’m not interested in having an argument begin in the comment thread. Play nice, and you get to have your say. This blog is not a “democracy.”

To my delight, I discovered that my dear classmate has a web site of his own: The Partnership for an Idiot Free America. I also discovered, even more delightfully, that he’s wonderfully opinionated, blunt, and is a very entertaining read! I would hate to have to answer some of his mail though …

Classmate X and I agree on quite a few points, even if I’m not always quite as outspoken. >;o)

He picked up on the Abuse thread we’ve been having here, and weighed in with his own opinion. As always, he can take whatever is said, and distill it down to its bare essence … and then spit it back out at you in plain English!

If you’re easily offended, politically correct, or lean rather a bit to the left … I warn you now … don’t go there.

P.S.

By the way … should one of us actually tell him that his hopes for an “Idiot Free America” are a bit idealistic? I think that if we ever achieved such a thing, someone would certainly invent a better idiot!