Well, I think it's high time I updated this thing, don't you? The good news is that things have been relatively calm around here, as far as Mark's health goes. I honestly cannot tell if Mark is getting better or worse. He has far, FAR less pain, and for that I am SO grateful (as is he!). But he has a LOT of fatigue still, and other issues, and I just don't know if we are moving forward or moving backward. He's off the $1200/month medication. It was having some undesirable side effects. Mostly he sleeps a lot, although he was able to go in to the church three times last week and do some work there, which is DEFinitely an improvement over a couple of weeks ago, so ... yeah, I'd have to say he's probably improving. I still find myself checking to see if he's still breathing when he sleeps, though. Maybe that's just my neuroses. I don't FEEL like he is "safe," but no one can really tell us just what is what. There are no markers on this road to say whether or not we are on the right path, so we just keep putting one foot in front of the other and try to make progress where we can.
That said, I don't think I'm going to be writing in here much for awhile. I don't know how to explain what has been going on in my head and heart, and I really don't want to try, except to say that I feel that I have gone into a sort of "hibernation," that I am conserving my emotional energy for those things that are REALLY important to me. This blog (and other aspects of my life) have required (at times) a huge vulnerability that has sometimes brought about much good and at other times has really bitten my hard in the tush. I believe, with my head, that the results of being vulnerable are worth the pain. However, I just don't have any spare energy right now. I find myself paring down, down, down so that my life is more and more focused: my children, my husband, my sisters, a couple of key friends, my writing ... Opening myself up to public scrutiny as I continue down this path is just ... no longer an option to me. I just can't do it.
My dearest friend and I have every intention of writing a collective memoir someday. She, too, is a pastor's daughter and knows all about that life (and afterlife). She, too, has a husband who has struggled with a chronic condition for decades, who has episodes periodically out of the blue which leave her wondering if he will make it through the night. I write to her every day. Sometimes a couple of times a day. And someday, you will all be able to read all about all my experiences (and my neuroses) when this phase of life is "history" for us and we are able to go back through our correspondence and glean what meaning we can from all of this. But for now ... I simply HAVE to retreat to my cave and pour myself into places where I know I am safe: private correspondence with trusted individuals and my poetry. I will come out in the "spring." I just can't tell you when that will be.
Monday, October 29, 2007
Tuesday, October 16, 2007
A Much Needed Breather
Hi, y'all!Well, as of today, it's been TWO WEEKS since we've had to go to the hospital! This hasn't happened in over a year. Maybe even two years? It's been GRAND! And now that Mark has a hospital bed, I'm able to sleep in my own bed, and I sleep HARD. None of this waking up half a dozen times (on a good night). No, once I'm out ... I'm out! And now that Mark has the bipap machine, he is sleeping better as well. Much better. And his pain level is significantly reduced, too. It's not gone, by any means, but it's manageable. Also, the lasix helped him lose 15 pounds of fluid weight. Needless to say, that has helped a lot. He still doesn't have much energy at all. Like today, for instance. He got up when I did, but went upstairs and fell back asleep (without his machine, which I don't like!). I woke him up about 11:00 for the nurse's visit. She came shortly after noon and was thrilled with how much better he's doing all around. But once she left around 1:00, he was beat again. He went back upstairs and fell asleep in his chair. BUT ... he has so much less pain. Fatigue we can deal with. It was that horrible, neverending pain that made life so difficult. I don't know if this is "the new state of affairs," or if God is just granting us a break, but either way ... it's been nice!
Well, I must be off. I have a conference with Alex's teacher. He is doing well, also, btw. He has a friend. A guy friend! Zachary. Alex told me the other day, "Recess used to be my least favorite subject, but now it's not." Three cheers for Zachary!!
Oh, and here are some (long overdue) pictures of Vader. He's growing like CRAZY! He's up to 15 pounds already. The average adult Cocker Spaniel is 15-20 pounds. And he's only three months old! He is just SO much fun. I can't even put into words how much joy this little canine has brought into our home. (He is, even as I type, literally snoring on his rug at my feet, worn out from a hearty game of fetch.)
Wednesday, October 10, 2007
Trucking Along
Hi, all! Just wanted to take a minute to let you all know that things are going relatively okay around here. We haven't been in the hospital in 8 days!!! Mark is not well, of course, but I think the oxygen is really helping to keep things from getting completely out of whack so often. And having the home health nurses coming every few days to stay on top of things is a HUGE help. Mark IS retaining fluid: five pounds in four days. That's a sure sign that his heart failure is progressing. But hopefully an increase in his dose of Lasix will do the trick. We went in yesterday to have blood work and a chest Xray done (to take a look at the amount of fluid on his lungs), but for the moment, he is able to be at home and to get up and down the stairs, etc. (Even though his new bed is downstairs, his computer is still upstairs. Jason offered to bring it all downstairs, but he wants the exercise, he says. Yes, for Mark, having his beloved computer at the top of the stairs is definitely motivation to exercise!)
For those of you who live in the area, I need to let you all know something important. The nurse said that we (the kids and I) all need to get flu shots, and also that we need to be scrupulous about hand washing/sanitizing. Also (here's where you-all come in) we need to keep him away from sick people. This is going to be a challenge. I whine about it sometimes, but I rather like having our home be Grand Central Station. However, I need to ask that anyone hacking or sniffling or feverish or any of that keep a wide berth from our place this winter. Although, with three kids in school, I'm not sure how we'll manage that! Well, we'll give it our best shot!
For those of you who live in the area, I need to let you all know something important. The nurse said that we (the kids and I) all need to get flu shots, and also that we need to be scrupulous about hand washing/sanitizing. Also (here's where you-all come in) we need to keep him away from sick people. This is going to be a challenge. I whine about it sometimes, but I rather like having our home be Grand Central Station. However, I need to ask that anyone hacking or sniffling or feverish or any of that keep a wide berth from our place this winter. Although, with three kids in school, I'm not sure how we'll manage that! Well, we'll give it our best shot!
Saturday, October 6, 2007
Ordinary (?) Days
I've been quite busy this week. Nothing serious, though, thank God! Just routine stuff like attending soccer and volleyball games, refilling cupboards and fridges, things like that. No hospital visits since we came home. Yey! Mark is doing okay. Not great, at all. His belly is bloated with fluid, his blood pressure is high, and his color is ... ghastly. Sort of a purplish gray. But he's able to be up and around (although he walks like an old man) and was even able to spend some time with the boys today, which they loved, of course!
Below, find excerpts copied from a recent email, written to a friend earlier this evening. (Yes, I'm cheating, I know, but ... oh, well!)
Just in from a walk with the boys and the dog. My intentions were, perhaps, less than noble. I wanted to wear them out enough to be able to get some quiet time to write to you, since we have plans (such as they are) for later this evening. Nothing much, just watching that movie with Kayte, a day later. She's off at a Beaver's game with the Sweeneys but will be home around 6ish. I'm hoping we'll be able to have a "family dinner." Brendan begs for them, and it's fairly rare--once or twice a week, at most--that we are all home/awake at the same time and get to sit down and eat together. So ... hopefully tonight. I'm not making anything fancy, just bread from the bread maker and red potato/leek soup. But it's a gray, drizzly day here, perfect for freshly baked bread, slathered with butter, and a big bowl of hot soup. I LOVE this kind of day. Sure, there's a certain appeal to summer, and spring is definitely full of beauty and promise, but this is the kind of day I like best (which is probably a good thing, since in Oregon, we have a lot of them!). My mom told me once that she heard somewhere (can't say whether it's true or not) that there is a higher rate of suicide in places where it is almost always sunny. At first that struck me as odd. Isn't sunshine supposed to make you happy? But then I got to thinking about it. Sunshine makes you (well, makes ME) feel energetic and so on, but it also drives me to do, do, do. I feel like I have to be UP. A day like today allows me to just kind of ... move at my natural pace, which (as I was told frequently during my growing up years) is "slower than molasses in January."
I had to take the pup out this morning, too, so that I could finish the last few pages of _The Ghost Writer_. I just took him out front, though, and threw his squeaky basketball, which is the size of his head. It's SO funny seeing him drag that thing back to me, over and over and over ... until finally I bring him in and he goes for a big, sloppy drink of water and ... collapses on the floor by my chair.
Yesterday ... what an "adventure"! The home health nurse had come and found Mark's blood pressure too high and his fluid retention in need of attention. So she called Mark's primary care, Dr. S. We inherited him when Mark's former doctor retired. He is ... not good. I haven't heard anyone within the system say that they like him. Of course, most people don't come right out and say that they don't. Not the medical professionals, anyway, but we've definitely gotten the idea that being his patient is not really a good thing, but Mark hasn't changed because ... well, who knows why? It didn't seem to matter much, anyway, since most of his care has been handled by Dr. Broberg and his team. Well, yesterday, we realized that it's HIGH time we find a new primary care doc. After rush hour traffic cleared up, I took the boys and drove to Newberg to pick up his prescriptions. Of what we had requested, they had gotten ONE of them right (i.e. the one that didn't need the doctor's authorization). But we got a bottle of Vicodin (which we already have) instead of valium (which Mark needs, if the pain hits badly). And he prescribed a new blood pressure medication that was put on the market FIFTY FREAKING YEARS ago! In other words, it's the "rough draft." Many newer medications have been developed since then that have far fewer side effects, the side effects to this particular drug being ... oh, tachycardia, palpitations, nausea, vomiting ... all the things he ALREADY HAS!!! And the Lasix? You know, the medication he NEEDS to get rid of the fluid that's building up in his body? They didn't send over the authorization for that one at all. It was past office hours by then. I had done my part (or so I thought) by getting everything to the pharmacist/doctor's office well before evening. And the nurse called! Hello??? Maybe a patient on home health care who is in heart failure and whose nurse has called in to say he's retaining too much fluid might NEED this medication???? GRRR. Anyway, now we have to wait until Monday and/or go to the ER, if things get worse. So far, so good. Well, not good! But not worsening. So hopefully, he'll be able to manage until Monday, when I can call BROBERG to get his prescriptions filled and find him a new doctor who knows (and CARES) what he's doing!
Anyway, deep breath ... I got Brendan down at a decent hour. Actually, he fell asleep in the recliner shortly after we got home (as in, almost instantly after walking in the door). So I carried him up to bed and sat down to relax. But then Kayte called. Mitch, the parent/high school teacher who had said he could take the girls to Shari's after the dance, had had to back out, and they needed a ride/chaperone. I said, fine. Brendan was sound asleep, and Mark seemed okay. So I drove over to the junior high, picked up five LOUD, giggly teenagers, and drove to Shari's. It was rather interesting to watch the girls. They were all giggly and goofy and being (at times) downright embarrassing. Well, nothing too terrible, but they definitely weren't being very mature! Especially Angie (Mitch's foster daughter, who's on the volleyball team with Kayte). But then, after about twenty minutes, the people at the table right next to us stood up, and I realized why the girls were being such dorks. The table was PACKED with high school boys. Once they left ... the girls settled right down. Why is it that we females tend to make such fools out of ourselves in our efforts to attract men? Well, I like to think we are more ... sophisticated, as we get older. (Do we? I hope so!)
Below, find excerpts copied from a recent email, written to a friend earlier this evening. (Yes, I'm cheating, I know, but ... oh, well!)
Just in from a walk with the boys and the dog. My intentions were, perhaps, less than noble. I wanted to wear them out enough to be able to get some quiet time to write to you, since we have plans (such as they are) for later this evening. Nothing much, just watching that movie with Kayte, a day later. She's off at a Beaver's game with the Sweeneys but will be home around 6ish. I'm hoping we'll be able to have a "family dinner." Brendan begs for them, and it's fairly rare--once or twice a week, at most--that we are all home/awake at the same time and get to sit down and eat together. So ... hopefully tonight. I'm not making anything fancy, just bread from the bread maker and red potato/leek soup. But it's a gray, drizzly day here, perfect for freshly baked bread, slathered with butter, and a big bowl of hot soup. I LOVE this kind of day. Sure, there's a certain appeal to summer, and spring is definitely full of beauty and promise, but this is the kind of day I like best (which is probably a good thing, since in Oregon, we have a lot of them!). My mom told me once that she heard somewhere (can't say whether it's true or not) that there is a higher rate of suicide in places where it is almost always sunny. At first that struck me as odd. Isn't sunshine supposed to make you happy? But then I got to thinking about it. Sunshine makes you (well, makes ME) feel energetic and so on, but it also drives me to do, do, do. I feel like I have to be UP. A day like today allows me to just kind of ... move at my natural pace, which (as I was told frequently during my growing up years) is "slower than molasses in January."
I had to take the pup out this morning, too, so that I could finish the last few pages of _The Ghost Writer_. I just took him out front, though, and threw his squeaky basketball, which is the size of his head. It's SO funny seeing him drag that thing back to me, over and over and over ... until finally I bring him in and he goes for a big, sloppy drink of water and ... collapses on the floor by my chair.
Yesterday ... what an "adventure"! The home health nurse had come and found Mark's blood pressure too high and his fluid retention in need of attention. So she called Mark's primary care, Dr. S. We inherited him when Mark's former doctor retired. He is ... not good. I haven't heard anyone within the system say that they like him. Of course, most people don't come right out and say that they don't. Not the medical professionals, anyway, but we've definitely gotten the idea that being his patient is not really a good thing, but Mark hasn't changed because ... well, who knows why? It didn't seem to matter much, anyway, since most of his care has been handled by Dr. Broberg and his team. Well, yesterday, we realized that it's HIGH time we find a new primary care doc. After rush hour traffic cleared up, I took the boys and drove to Newberg to pick up his prescriptions. Of what we had requested, they had gotten ONE of them right (i.e. the one that didn't need the doctor's authorization). But we got a bottle of Vicodin (which we already have) instead of valium (which Mark needs, if the pain hits badly). And he prescribed a new blood pressure medication that was put on the market FIFTY FREAKING YEARS ago! In other words, it's the "rough draft." Many newer medications have been developed since then that have far fewer side effects, the side effects to this particular drug being ... oh, tachycardia, palpitations, nausea, vomiting ... all the things he ALREADY HAS!!! And the Lasix? You know, the medication he NEEDS to get rid of the fluid that's building up in his body? They didn't send over the authorization for that one at all. It was past office hours by then. I had done my part (or so I thought) by getting everything to the pharmacist/doctor's office well before evening. And the nurse called! Hello??? Maybe a patient on home health care who is in heart failure and whose nurse has called in to say he's retaining too much fluid might NEED this medication???? GRRR. Anyway, now we have to wait until Monday and/or go to the ER, if things get worse. So far, so good. Well, not good! But not worsening. So hopefully, he'll be able to manage until Monday, when I can call BROBERG to get his prescriptions filled and find him a new doctor who knows (and CARES) what he's doing!
Anyway, deep breath ... I got Brendan down at a decent hour. Actually, he fell asleep in the recliner shortly after we got home (as in, almost instantly after walking in the door). So I carried him up to bed and sat down to relax. But then Kayte called. Mitch, the parent/high school teacher who had said he could take the girls to Shari's after the dance, had had to back out, and they needed a ride/chaperone. I said, fine. Brendan was sound asleep, and Mark seemed okay. So I drove over to the junior high, picked up five LOUD, giggly teenagers, and drove to Shari's. It was rather interesting to watch the girls. They were all giggly and goofy and being (at times) downright embarrassing. Well, nothing too terrible, but they definitely weren't being very mature! Especially Angie (Mitch's foster daughter, who's on the volleyball team with Kayte). But then, after about twenty minutes, the people at the table right next to us stood up, and I realized why the girls were being such dorks. The table was PACKED with high school boys. Once they left ... the girls settled right down. Why is it that we females tend to make such fools out of ourselves in our efforts to attract men? Well, I like to think we are more ... sophisticated, as we get older. (Do we? I hope so!)
Tuesday, October 2, 2007
Rearranging
Mark is home. I am so very tired tonight, and this is the third from the last thing I need to do before turning in for the night (the others being taking the dog out and setting up the coffee pot), so I'll keep this brief, but I wanted to pop in here and let you know that he is home. The doctors are pleased that there wasn't any brain damage. A little slight disorientation, clumsiness, etc., yesterday, but today he is doing pretty well.
Jason spent most of the day rearranging our furniture, etc., and Dad left work early to come over and help. We had a hospital bed delivered and set up in the living room, with Mark's oxygen machine at one end and his bi-pap machine at the other. The Senior Herrings also donated a recliner, which is right beside the bed. Mark is ... not thrilled. Oh, the recliner is great! It's the rest of it that he's not so happy about. I can't imagine that I would be all that thrilled in his shoes either. But ... he's alive. That's definitely something to be grateful for! Although I need to go wake him up and make him put the bi-pap mask ON. It won't do him a whole lot of good lying on the pillow by his head ...
Jason spent most of the day rearranging our furniture, etc., and Dad left work early to come over and help. We had a hospital bed delivered and set up in the living room, with Mark's oxygen machine at one end and his bi-pap machine at the other. The Senior Herrings also donated a recliner, which is right beside the bed. Mark is ... not thrilled. Oh, the recliner is great! It's the rest of it that he's not so happy about. I can't imagine that I would be all that thrilled in his shoes either. But ... he's alive. That's definitely something to be grateful for! Although I need to go wake him up and make him put the bi-pap mask ON. It won't do him a whole lot of good lying on the pillow by his head ...
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