slowe

Sorry I've been missing-in-action lately. The daily saga with DH's health continues. After two incredibly bad weekends (with him not feeling up-to-par and his fsubsequent foul moods) peaked on Tuesday, when his blood pressure dropped to 80/60. (Normally with a bag full of meds, his BP runs 140/80). It was an inconvenient as could be, with me being the only one in the office and it being the final day of the month, with billing to be done after 5pm. But there we were, on the line with the VA for nearly an hour trying to talk to a nurse and then trying to get an appointmen (after an hour on the phone I was told he should be seen in the ER). So off to the VA we went. Admitted to the ER where, after an IV, an EKG, and another ultrasound on the carotid arteries, they came up with...........nothing! The good news is they couldn't find a reason for the drop in BP. The bad news is they couldn't find a reason for the drop in BP. And so goes the story of life after a stroke.

Today is our 39th wedding anniversary. After Rolly's stroke, I kind of "gave up" on him remembering things like that. So this year I decided not to get him a card or even mention what day it was. Imagine my surprise when I got up this morning and there was a card sitting on the bathroom sink! He said he was in a store the other day and happened to walk down the card aisle, and something in his "post stroke" brain remembered our anniversary. He did have to ask someone what the date was however. Things like this remind me that it truly is the "little things" in life that make a difference.

As I last posted, Rolly is now 2 years past stroke (actually 2 years and nearly 3 months!) Is this as good as it gets? I'm thinking so. Short term memory is shot to hell. Patience level is extremely lowered. Get's confused and overstimulated. How do I put this one...........virtually no interest in sex. Every day we start over, apologize for yesterday's mistakes, and vow to make this a "good day". But most days it still seems like I'm giving 99.9% and he's giving .01%. I think I'm still in "denial" sometimes. He is a different person. He has changed. He does have diminished capacities. Darn it, this isn't how life was supposed to turn out!

It's been a long two years. Rolly and I are both currently on antidepressants. But we're hanging in there, and some days that's all you can ask. Here's something I wrote for a friend's emag. Tomorrow is Rolly's 2 yr "stroke-a-versary." On April 1, 2005 my husband, who had just turned 58, had a stroke. On our last "normal" day together we went to dinner at a new restaurant, watched a little television, and went to bed. My husband tells me (I slept through this part) that he woke up about 11pm because he smelled something burning. He looked outside but didn't see anything, and went back to bed. About 2am he woke me up, saying something was wrong. He was dizzy, couldn't walk without stumbling, and had what he described at the worst headache in his life. We sat up in the living room for a couple of hours, seeing if he would get better (He'd had one previous episode where his blood pressure spiked and I took him to the ER. At least that's what they said it was. Symptoms were similar, but not as severe. I think he may have suffered a first stroke back then). We went back to bed for an hour or two, and when we woke up he was no better, so I took him to the VA clinic when they opened at 7:30am. They immediately assessed him and sent him to the local imaging clinic for an MRI. The technician there was not very supportive when my husband started to freak out. I asked if they could sedate him so they could proceed, but they told me no. We went home, stopping to tell the doctor what had happened. He said he would have ordered sedation if the tech had called. I tried, what more could I do? So they said take him home and if he got worse over the weekend, take him to the ER. Monday afternoon he had an open MRI. He was still scared, but they let me sit on a chair and hold his hand through the procedure. It was after the VA clinic had closed by now, and so we went directly home. About 5:30pm the doctor called me and says he'd had a stroke. I remember my response "Oh, really?". He told us to be back at the clinic first thing in the morning. He had some trouble walking the first couple of days, but no paralysis, no loss of speech or body functions. And as I told my girl friends, he didn't drool! (~_~) Sometimes if you don't find the humor in the situation, it becomes way too overwhelming and depressing. He tried to drive that first weekend, before we knew it was a stroke. After he ended up on the wrong side of the road, going the wrong way, he pulled over and I drove (if you knew me, you'd find that amazing--I avoid driving whenever possible). But stroke changes you, not just the person who suffered it, but the caregiver, too. It does get easier, but every day is a struggle. Now I know that he had four of the five warning signs of a stroke. We waited five and-a-half hours before seeking medical treatment. The doctor told me if it ever happened again, he needed to be taken to a hospital within the hour, to prevent more extensive permanent. damage. Knowledge is power. Be prepared! The following information comes from the National Stroke Association website (www.strokeassociation.org) Stroke is a medical emergency. Know these warning signs of stroke and teach them to others. Every second counts: Sudden numbness or weakness of the face, arm or leg, especially on one side of the body Sudden confusion, trouble speaking or understanding Sudden trouble seeing in one or both eyes Sudden trouble walking, dizziness, loss of balance or coordination Sudden, severe headache with no known cause Call 9-1-1 immediately if you experience symptoms! Time lost is brain lost!

I'm going on the record. I HATE New Year's Eve. I don't see it as looking back on a great year, I've always felt it was more of looking back on a year with regret. And life is too short for regrets, as I've surely found out the last 1 1/2 since Rolly's stroke. So to all of you, I wish you all a New Year filled with hope.

My brother deep fried a turkey a couple of years ago, and it was very crispy skin, and very moist and delicious inside. Definitely no batter like KFC! (~_~) I think he probably used some kind of rub on it (i.e. poultry seasoning based?).

I still have a husband. Not the same husband I had before the stroke, and certainly not the husband I wish I could have back, but he's still here, relatively healthy, and FOR THIS I AM THANKFUL!

Don't get me started on the VA. He's gone in about every 4 weeks all summer for a CK blood test, as the level just kept going up and up each time. (a high CK level can be a precursor heart attack -- wonderful!) About 5 weeks ago the new DR took him off his lovastatin (for cholesterol) and the test on the 8th is finally near normal But here's how the conversation went down yesterday The DR was supposed to "get back to me" with the results. of course that never happened. So i place a call to the DR. You can never get through of course, you call and leave a message and hope somebody with a brain gets it through the system. I didn't hear back and I didn't hear back, so I placed another call. A nurse calls me back yesterday and asks for him. I explain I'm the wife, he's had a stroke, he's at home can you talk to me. Of course they can't. So I call him and he calls her and then she (finally) calls me back to say the blood test is near normal and he can "continue the medication". I ask if this means keep "not" taking the one she took him off of, or to start taking it again. Seemed like a logical question to me. She says (can you believe this) "I don't have any idea. Let me read to you exactly what it says --and she repeats herself almost verbatim! SO again, I ask, does that mean take the statin or don't take it? She says the prescription is still good. I explain I have two bottles of the *beep* at home, and that's not my question. Does he take it or not? She says she is "just" filling in for somebody and has no idea. God, I hate it when people use that excuse---isn't anybody responsible for anything anymore? I ask her if she could possibly find out from the DR. She agrees to do that. Then I ask if the DR still wants to see him in Oct. She says "well, you have an appt on the 17th with DR M---(some name I've never heard of). I say really? News to me. I ask what happened to Dr. Patel (the second DR he's had here, but we had never seen yet). They reassigned DRs and now we have a "him" dr instead of a "her". I explain that he has historically done better with female DRs. No, you can't change now. Keep this appt and if it doesn't go well, then you can request a change. The last thing on my agenda is to see how to get access to his records, drs calls, etc. I had been told we need an advance directive. I ask if this will let me talk directly to the drs without him giving his ok each time. She says no, it's only "if mr. lowe is no longer able to speak for himself." So I try to rephrase the question and she starts her spiel again. I break in with (by this time thoroughly fed up with the system) "I get it, I get it, I can pull the plug on him. What I'm asking is how to get access to his medical providers directly." Of course she has no idea and refers me to social services. This lady actually has a brain and is nice. Bottom line is each DR interprets the order differently, and it's up to them to "choose" to talk to me or not. UGH!

For my last birthday, one my elder son's wife gave me a gift card to Michaels. I opened presents, cleared off the table, threw away the wrappings, etc. That was the last time I saw the gift card. Looked hi and lo, but to no avail. Fast forward nine months to this weekend's cleaning spree. And you'll never guess what I found in one of the bags of recipes, grocery lists, junk mail, etc. You betcha---my once lost gift card is found! Now to combine it with one of their famous 40% off coupons and go shopping!

I just bought two books from Amazon. I didn't realize they had come until Rolly went out the front door at midnight (long story, he smelled smoke, everything is fine! (~_~) But, anyway, he found the box outside and set is in the bathroom. A few minutes later I got up to let one of the dogs out and found the box. Thinking it was the machine for his sleep study, I promptly went back to bed where I tossed and turned for about 20 minutes. I figured I might as well get up and watch the video about the sleep study. Pleasantly surprised when I opened the box and found my books! So it's after 1am and here I sit, reading cookbooks from cover to cover (is there any other way to read a cookbook?) Dream Dinners...Life Just Got Easier! and Super Suppers Cookbook (both based on the popular "assemble-and-freeze" places that seem to be popping up everywhere these days. I can't wait to try them! (and you thought Rolly was the only cook in the family! (~_~)

I watched the Irwin memorial last night. I thought it was very well done. Touching without being maudlin. I think that's what all good memorial services should be like. I was a little surprised how composed his little girl was when she read her little speech about her dad. Not a single hint of tear. Either she is very grown up, or doesn't really realize the permanence of death.

Red Hat Saturday My Red Hat friend, Jan, & I had a delightful day Saturday! It was a full 12 hours from the time she picked me up in EG till she dropped me back off. Amtrak was rather slow we thought, but that gave us more time for chatting on the way in (and sleeping on the way back!) The Ferry Building and outdoor farmer's market were wonderful! We both came back with our tote bags overflowing. http://www.ferrybuildingmarketplace.com/ It was hard to choose a place to eat, but we finally settled on Ferry Plaza Seafood. Good choice, Jan! She let me pick the wine, and I paired a nice pinot grigio with our seafood. http://www.ferryplazaseafood.com/ We couldn't get enough of the fresh produce (although it was definitely higher priced than the farmer's markets here!) $3 a pound for dry farmed tomatoes, but they were worth every penny! Lots of the vendors gave out samples, and the peaches were a sure bet after we tasted them---summer in every bite! Let's see, Jan came home with some nice looking potatoes and a loaf of asiago cheese bread that kept calling her name all day! I think she ended up with some really fresh looking green beans as well. I brought home some fingerling potatoes and a loaf of green onion bread and a loaf of sourdough we'll use today for "buns" for hamburgers. We bought a couple of desserts, Jan a brownie, and me a raspberry macaroon that we munched on while walking about and people watching. Lots of olive oil and vinegar tasting to be had as well. My first "real" train ride, and I must say trying to figure out the timetable was an experience in itself! I was amazed how clean and well maintained both train stations were (I guess I was thinking more along the line of Greyhound bus terminals! (~_~) Rolly had dinner ready for me when I got home, and that was a nice touch to end a wonderfully casual, stressfree day!

Rolly make homemade fried apple pies yesterday for the grandgirls (well, we all enjoyed them! (~_~) Probably the most ambitious cooking task he's taken on since his stroke. He was so pleased with himself! He'd about conviced himself he "couldn't do things like that" anymore. Yes, he got tired. But the sense of accomplishment he felt was worth it!

I started what ultimately became a tradition the first time I held my brand new grandchild back in 1994. I had someone take my picture. "I must capture this memory," I thought to myself. And then I decided that I would always have my picture taken the first time I held a new grandbaby. What I didn't know then is the memory of that precious moment--all seven of them (so far!)--would be indelibly kept deep in my mind and heart forever.

It was a

Sue, That's what my Mom calls it, "making memories." And that's what it is! Last night, our older son and family arrived for the weekend, it's their annual fishing trip out of the SF bay into the ocean. So the guys go fishing, and Grandma stays home with the grandkids. Wonder what memories we will make today?

Got my first stroke support newsletter in the mail yesterday. It came at a good time! Rolly had had an "off" day and was a bit grouchy, and it reminded me that it's not only day by day, but sometimes minute by minute! We're in the middle of a heat wave, expected to be between 105 and 110 today. Off to work 1/2 day, then home and in the pool!

I finally decided I had to do SOMETHING, so attended a stroke survivor group meeting held at Kaiser. After a brief time together, they split into two groups, surviviors, and caregivers (that's me!). They of course wanted to hear my story (I kinda felt like I was at an AA meeting, you know..."Hi, my name is Susan. (~_~) It was amazing to see them all start to nob and smile as I related me story....been there, done that, all of them! It was encouraging to know that! I came away with a new sense of what the stroke had really done to Rolly, and a few coping strategies. Hopefully it makes a difference in our relationship, and the general atmosphere around the house!

Sometimes it seems like the shock and scare of Rolly's stroke was just yesterday, but some days (like lately) it seems like this is the life we have always lived. A life where marriage is no longer 50/50 (if it ever was?), but 90/10, weighted heavily on my part. A life where I often feel like I'm walking on eggshells just to not "push his buttons" and set him off. A life where "For richer or for poorer, in sickness and in health" has new meaning daily.

Thanks, Asha! I agree, they "suck" but what can you do, this is what life dealt us and we have to make the best of it or, as Jean says, the stroke wins! It's just harder to do some days. And we're only a year into this. I don't know how some of you have done it for year upon year upon year. My hat's off to all of you! Susan

I can't believe how long it's been since we posted. Nothing wrong, just "life" taking up our time! As I've come to expect, Rolly has good days and bad days, and after a year I think I finally realize how "optimistic" I was when the first few days and weeks I told everyone how lucky we were that it was a "minor" stroke. I truly didn't realize the ramifications it would have on our life, since he didn't have what I considered the "typical" stroke aftermath---paralysis, speech problems, etc. But now, after more than a year of living with the stroke and it's seeminly permanent effect on our life, I see the limitations he has, the fatigue that is still with him constantly, and the irritability and shortness that often pops up. But does it beat the alternative? Heck yeah! And life goes on.....

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