The incongruity of the smell of roasting turkey and steaming pies back-dropped against a live view of the ongoing horror in Mumbai is giving the day a surrealistic feel.

Imagine – our 9/11 … the trauma, had it continued for more than 24 hours, how mind numbing it would have been. That is what is happening in Mumbai right now.

I wish I could reach out to my friends in India – and all of those who are caught in the throes of this event, and offer my condolences, my concern, my empathy.

Here are the photos coming out of Mumbai … please note, some are VERY graphic … :o(

We are united in spirit with the people of India as they suffer this unprecedented attack.

A few posts ago, I discussed blogging more openly. There are a lot of things that I find difficult to admit publicly, and even more things that I find difficult to discuss even privately … and all of those things fit into the same category: difficult events which are currently ongoing, and which don’t yet have an end. It’s easy to rub the wound once it’s healed over, but quite another thing to tamper with it when it’s still raw … while the trial is ongoing, and there’s no way to know when or how it will end.

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.

As I read the above quote, I wonder if English has really improved over time, or just gotten more garbled … ;o)

I don’t want to let too much time pass without another post. The longer I wait between posts, the easier it is to just keep waiting. The moment will never be perfect … so, isn’t that what blogging is about , anyway?

There’s nothing new to report on the barn, but I will post as soon there is some more progress. My son is cutting and splitting wood to earn money for the materials he needs to continue the work. In the process, he’s also helping to bring a bit of heat into the house … which was much welcomed this morning, since the temperature was about 21°­F (-6.1°C) outside when I woke up.

But the barn isn’t all that’s been going on, and I wanted to touch upon a few different subjects. Since there have been a lot of developments since my last “patient blogging post”, I thought I would write about what’s currently going on. I think that my patient blogging might pick up in the near future.

After my stay in the hospital last fall, things remained pretty stable all the way around until late spring. At that time, I was informed that my lab values had worsened. I wasn’t really concerned, because they’ve been bad often in the past, and then went back to what is normal for me rather quickly. By mid summer, however, it was becoming apparent that this wasn’t a normal fluctuation, but that I had simply lost more kidney function. We began talking about dialysis and transplants again. At my age, I don’t want a transplant, but I’ve decided to accept dialysis.

Having done quite a bit of research, I decided that I want to start with peritoneal dialysis. My nephrologist told me that it’s a good way to go, and that the biggest concern is an elevated chance of a serious infection, usually in the first month of dialysis, as the patient is still learning how to deal with things. He commented that peritoneal dialysis causes less stress on the cardiovascular system, and was the most likely choice for allowing me to lead a relatively normal life.

He sent me to see a surgeon to prepare for the necessary surgery. I saw him in mid-October, and he scheduled me for surgery on the 29th of October. He told me that he would give me a port in my abdomen for peritoneal dialysis, and also a fistula in my left arm for hemodialysis, just in case. There’s a question of whether the peritoneal dialysis will be adequate, because of possible scar tissue which could be left over from the laparotomy I had in 2004. In that case, I wouldn’t need to go back for yet more surgery, and then still have to wait for the fistula to be ready for usage.

Not long after I saw the surgeon, I had a call from my nephrologist – in person. You could have knocked me over with a feather. He sounded a bit nervous as he told me that I couldn’t have the surgery on the 29th … that it would have to be rescheduled. He tried convince me to do it in two sessions – the fistula on the 29th, and the port at a later time. I really wasn’t going for that. He also said that if I really needed dialysis sooner, that they would have a fistula put into my chest He mentioned that the nurse who teaches PD patients how to actually perform the dialysis at home didn’t have any openings until early January. I was still a little confused, but I told him that I would call the surgeon and ask him to set a later date.

I never got to. A few minutes later, the surgeon’s office called me. They told me that the nurse who gives the PD instructions (a one month course, apparently) had called my nephrologist and danced on his head for not going through her first. *cough* She had no openings until early January, and the course needs to begin within 3 weeks of the surgery. It made me chuckle to realize that my poor nephrologist had just been read the riot act by a nurse. I can’t imagine his reaction … he’s a very calm, soft spoken, and wonderfully laid back sort of person. Seriously though, I’m really fond of him, and felt bad that he’d gotten in trouble.

So, the date was reset to December 17. I have to see the surgeon all over again in the first week of December; that will probably provide me with even more information, although I must admit that he was very communicative when I saw him the first time. One of the things that I expected to hear from him, but still came as a rush when he actually said it, was: “From today on, this arm (my left) is mine, and the people who do the dialysis. It’s not yours any longer.” He continued with the following instructions: no blood pressures taken, no blood drawn, and no watch or other jewelry on that side. I’m still trying to get used to looking at my right wrist for the time …

The whole idea reminds me one of those charts of cows with all the parts named according to where they’ll go once the mooing is over … with parts of me seeming to only be on loan! My son told me that I should charge a usage fee for the arm I still have to carry around, but can’t use anymore. ;o)

There have been other changes which are not related to ESRD. I’ll blog about those at a later time, because this post is already long enough.

I want to thank those who have kept coming back, month after month, when I wasn’t posting. The comments, the thoughts, all meant far more than I can express. Thank you again.

Last week, a friend (whom I promised not to name) made a deal with me. The person would go have a medical test done that had been put off for a while – if I wrote a blog post. It was specified that I was to write a good blog post. Well, it’s certainly going to be a blog post, but I don’t know how “good” it will be. ;o)

I know that my long pauses between posts must make it seem as if I’d quit blogging … but I haven’t. In previous posts, I’ve commented that when “situations” are current, I find it difficult to blog. It’s far easier for me to write about things that happened a long time ago, and which have known outcomes. I guess it’s all part of how close you’re willing to let people come when you’re actually experiencing the situation.

Those of you who’ve been reading this blog know what happened at this time last year: my oldest son went missing, my computer died, we were burglarized twice within two weeks, I was in the hospital for almost a week due to some nasty gut problem, and my identity was stolen. That’s it in a nutshell, but nowhere near the entire scenario.

Last fall’s unpleasant events didn’t stop with the new year. Like the proverbial snowball, the issues just kept getting bigger, and picking up momentum as they rolled along. I began to write about things as they stand on several occasions, but it was always with the thought that things would eventually settle down, and that I’d be able to see at least some of the ongoing issues come to some sort of conclusion. That hasn’t happened. I find it really challenging to write about things that are ongoing … because it’s sometimes too hard to write objectively about something that you’re living every day. I didn’t want to write about what was going on, but I also couldn’t focus on casual posts while I was mired down … so I waited.

My friend maneuvering me into this position has made me do a lot of thinking. and I’ve decided that I should at least try to start writing about some of the ongoing situations. I figure that if you already know about what’s going on, there won’t be a reason for me to keep to myself and not blog, right? I will write about one of the most difficult issues in my life … if I can get that written out, then who knows what will come next … *cringe*

Okay – here goes …

Whenever I’ve blogged, I’ve been very careful about what photos you see of my home. The reason for that is that my home was here before the US became a nation, before Maine separated from Massachusetts, and before the Berwicks separated from Kittery. It’s ooooold! At one time, it was in the center of town, right near the corner church, almost directly on the main crossway. In the time since Berwick was settled, it’s gone through a lot of changes. The center of town moved three miles southwest, and became a quaint little village on the shore of the Salmon Falls river … and the old center eventually became a collection of farms, mostly dairies. This house was no exception. Doug milked cows twice daily when I met him … and he did it every single day of the year. This city girl learned a lot about farming. While I loved being in the country, being part of a working farm is another story completely. Culture shock hardly begins to describe it …

The first years here were a challenge. My father-in-law was born in 1914, in what became Doug’s and my bedroom. When I moved in with my three children – and one soon to come – I was shocked to see that the house was stock full of someone else’s belongings. Since we were only supposed to be there temporarily (until we built our own house somewhere on Doug’s parents’ vast expanse of fields and forest) I was asked to not bother the stuff that didn’t belong to us. All but three of the rooms, not counting the bathroom, were full of stuff … some all the way to the ceiling. Every cupboard, every closet (both of them), every little nook and cranny, had the abandoned belongings of people who died long before I married Doug. As the years went by, and it became apparent that we were not going to be leaving the farm any time in the foreseeable future, I got permission to open up the rooms in the rest of the house; our family of six needed room to finally be able to settle in. We put loads and loads of old furniture, knickknacks, cooking utensils, a foot powered Singer, dishes, rugs … on and on … into the attic, and slowly, over a number of years, we got control of the entire house.

Well, control might be too strong of a word, and might leave you with a false impression. It’s never been a comfortable place, my adult kids swear it’s haunted, and the disasters we’ve had in here, mostly due to the age of the house, and the poor repair it was in, are more than enough for several lifetimes. We were treated to everything from burst pipes (almost yearly), to rats falling through the ceiling on to my face in the dead of night (at least 4 times) … to parts of the house slowly caving in … ad nauseam … it was an absolute nightmare.

Twenty-nine years later … we’re still here.

I won’t go into a lot of detail about the house itself, except to say that I never tell local people where I live. Just imagine a house that’s well over 300 years old, which has had almost no maintenance in about 50 years, and you might begin to get the right impression …

Heating this 10 room monster is practically impossible. About 15 years ago, I translated a book from French into English for a Canadian company, and with the money I made, we bought a new furnace. The old one was a menace … it would make loud, rumbling “BOOMS”, covering everything in the house with soot with each new blast. The new one ran a lot quieter, and also kept us a little bit warmer … with the accent on “little”.

The problem with this old house is that when you heat, you’re heating the outside. This house is so leaky that it’s hard to keep a candle lit. The new furnace did it’s best, but we were still very cold in here. Snow that came in through the cracks didn’t melt on the floor. I thought it was a terrible thing ….

… until 4 years ago. Our oil furnace was costing us over four hundred dollars for three weeks’ worth of oil. There was no way that we could continue to fork over that kind of money. Four years ago at about Christmas time, we shut down the furnace, and it’s been turned off ever since. The first year without the furnace, we had 1 kerosene space heater. The only way to get warm was to get right up against it – and burn on one side while freezing on the other. The second year, my friend Joanie gave us another kerosene heater, and that year we had two of them going. They didn’t do much overall, but we could go stand in front of them to warm up. Last year, we discovered that the reason Doug was so sick every winter was because of the fumes being given off by the kerosene heaters. We turned them off permanently.

About then, my oldest son acquired a wood stove from a friend who was getting rid of his, and with a lot of shifting things around, he installed it in the kitchen. It’s nowhere near adequate, even for just the downstairs, but when someone actually gets it going, the kitchen becomes quite warm, so we have one room we can take refuge in. The wood stove also has a lot of downsides: it frequently won’t get going, needs constant attention, is messy as the dickens, etc., but it’s much better than nothing at all.

We’re going into our fourth winter of not having central heat. The bathroom is often in the 40’s as a high … (try to take a shower in that!) … and sometimes it’s too cold to stick my hands out from under the covers to type.

But … there’s light at the end of the tunnel, after 29 years …

My oldest son is slowly, but surely, converting the old cow barn into a home. Once it’s done, it will be a dream house … and best of all … it will be warm! We have to laugh whenever we realize that moving into the barn is going to be a step up for us!

This is not the entire story, but it is a start. To not give anyone eyestrain, I will stop at this point, and share some pertinent photos. As the barn turns into a house, I would like to share the transformation with you. Now that you know that I live in the Munsters’ mansion, I no longer have a reason to be careful to not mention it.

So – there’s at least one reason that will never again prevent me from blogging …