Coping
Patient and Caregiver Diaries
Patient Diary -- Bailey Rains
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Busy-ness
After reading everyone else's diary entries, I feel so useless. It seems that everybody is busy going and doing and getting things accomplished, while all I do is take it from day to day, just existing. I'm not complaining, mind you, I just am not getting much accomplished in the world. I have days of accomplishment, where I haul hay and feed for the critters, go grocery shopping, and mow the yard. I even went to the big city the other day and went shopping all over town. I got my trees sprayed for bugs and have been chasing the water sprinkler all over the yard. However, is this constructive? Well, it keeps my world smooth. It is stuff that needs doing, and I'm the only one that's going to do it. I don't even have to play at being 'Mom', as my son is with his dad for a couple of weeks. It's been extremely hot and dry (100+) so I limit my time outdoors to the evening hours. It might not benefit the world, as I think my crusading days are over, but it keeps me going. A donkey kiss can go a long way toward making me laugh out loud.
New news... nearly new news?
Yes, it's been a while since I've been on here. I went to my #1 PH specialist in Houston on the 29th for a CT and office visit. The CT showed that my pericardial effusion is much reduced, but I am still supposed to stay off the Coumadin until it is totally gone. All other values were good - physical exam was good, too. Then I blew it by asking about my future. Basically, after a little discussion about numbers and futures, I was told I might have another two years to live. Slapped in the face by reality. Again. You would think I had learned enough by now to just let things be. That is taking an emotional toll on me. I've fought so hard for so long that I assumed I was winning the war. No such victory with this beast.
July the 4th was great. We went to my sister's and went out on their boat to watch the fireworks display over the lake. This is our third year to do this - a new tradition we have started. The display was amazing, from their city and also from rich citizens that live along the lakeside. Patriotic music on the radio helped liven the mood, too.
We just had our driest June in history. No rain at all. Everything up here is crispy and brown. The heat is fierce, too - 100 for the last week. We have gotten a break now that July is here. It's rained the last two nights. Last night was just a small shower, but tonight were thunderboomers with good long soaking rain. We sure needed it. My poor river is down more than a foot and is getting slimy. We needed some good rain to wash away the junk.
The animal family is doing well. Everyone is fat and sassy, including myself. I nearly cried when I saw the scale at the doc's office. I'm ashamed of myself. After all I went through to lose my weight, I can't let myself get heavy again. Of course, I blame it on when my son was with his dad for two weeks and I ate the stuff that he doesn't like to console myself. He's fixing to go back to his dad's after the 12th for the rest of the month. Time for me to plan things to do and places to see. I've got things I need to have fixed up around here, and this will be a good time to do it. I wonder if I can get anyone to work in this heat?
Feeling good
I guess my title is a misnomer because I've had some heart rhythym problems. They are now all gone and I feel so much better! I had to take a pulse oximeter symmetry test last Wednesday night where I had to wear a recording pulse ox machine and sleep WITH NO OXYGEN. Evidently Medicare needed this test to prove oxygen necessity. Well, I guess they got their proof because O2 saturation levels stayed in the 78-83% range, and the corresponding heart rate to make up the O2 deficit stayed ing the 112-123 bpm range. I did the six hours of the test, then strapped on the O2, turned it up and slept another six hours. I was so TIRED the next day. Evidently my heart was tired of the overload, because it started beating erratically Friday morning. Any kind of stress load makes it have arrythmias, and my doc said as long as I'm off my Coumadin, heart problems could leave me "in deep doo doo". SO... to make a long boring story short, I put myself on house arrest and have been staying in or near the bed. Today I'm moving about a little and things feel just fine.
Last weekend while playing at the lake, I accidently drowned my spare Flolan pump. I am always so careful around water. I slap an Aqua-Guard patch on my catheter site. I put my pump in an Aqua-something water proof pouch and stuff it in my bra so that I can get wet up to my waist. Well, I also keep my backup pump close by in case of emergencies, and you guessed it. I hopped into the water with the pump in my pocket. Yes, it's a 4"x4" heavy box, but for those of us who carry our pumps and cassettes in our pockets, it's a familiar weight. I remembered it as soon as I got out of the water, and I took it out, shook out the water, took out the batteries, and put it in the sun to dry. I put fresh batteries in when I got home, and it came back to life, but I wasn't going to trust my life to it. The Accredo nurse I talked to laughed when I told her what happened - this must be a fairly common occurance in the summer months. Anyway, I have a replacement pump and life goes on...
Do you Flolaners ever think about who used your pump last? My medication cassette holds 100 ml, and my dosage rate is 92 nannograms of solution in 24 hours. The replacement pump I got showed a reservior of 42 with a pump rate of 8. I was just curious about what kind of medication was used and what for. Insulin? Chemo? No telling. Just nosey me, I guess.
I'm back!
I've been gone a while, I know. Apologies to all who worry about me. I love you guys!
I've been up at the ranch for a while. It's been so hot but animal business has been calling, and we have a lake to go play in up there not far away. It's a most peaceful place to spend a few days. The red dogs were glad of a dip, too. The alpacas are showing a dismal lack of manners to people, as they haven't been 'messed with' in a while. My brother-in-law can catch them, but I couldn't even touch one without them running away. They are happy with their lot and don't want me hugging on them. I guess that's what mini donkeys are for. Got another one - a little 7 month old gray female I'm calling Sophie. Sara needed a playmate. Sophie's so tiny! I fenced in the hill behind me for the donkeys to go munch on so they won't tear my yard up any more.
Speaking of yards - I'm having a stone wall built at the bottom of my hill to protect us from the river when it floods and also to break up the steepness of the slope. It's too steep to mow. Anyway, the other morning the tractor guy came up to the door and asked if I liked kittens. I said yeah and he motioned me over to his tractor. He reached into the engine compartment and pulled out three little tiny kittens. I assume the mother had them in there wherever the tractor had been parked. OK, off to the vet for kitten milk replacement formula and bottles. Now I am mommy to three more babies. They have their eyes open, so they are at least two weeks old. They have adapted to the bottles just fine, and are getting fatter and louder! And here I am trying to have fewer mouths to feed. Guess God didn't see it that way.
Kitties, donkeys and eggs, oh my!
Life has indeed been busy on the farm!
The 3 kitties are doing wonderfully! In the week I've had them, they've gone from eating half an ounce of formula apiece to over an ounce apiece. Today I tried to get them to drink formula out of a dish, but no go. They want Mama (me). They have gone from barely walking to running across the floor when they see me or hear my voice. Their favorite spot is curled up in my lap after eating. My son and I went out tonight to eat, and when we got back, they were all curled up on my flip-flops. They're so cute and developing their own unique personalities.
Sara and Sophie the mini-donkeys are doing well. Sara's been hollering some because last weekend we took the guard dog and the lamb up to the ranch to guard the alpacas. She misses her dog and lamb. Sid, a neighbor, feeds the donks pears off his trees and they love them. They have also denuded the lower branches of my peach trees. Tomorrow they get moved up on the hill.
Agoraphobia?
I am a recluse, I admit it. I don't seem to need people like most people do. When I do, I go out to town or church or school and interact with all the people I want to. I don't have any problem getting out. My problem seems to be my space. I don't want anybody invading my space. I put off calling repairmen until I absolutely have to. I have a fence around my property with a gate that I won't open unless I want to. I am even building a stone wall around some of my property. Upping the castle battlements? I don't know. I never even thought about it until tonight. My sister sent an email saying she'd like to bring her grandchild over for a visit sometime this week, and the thought has terrorized me. I've already had an anxiety attack and had to take a Xanax. I love my sister and my great-niece. What's the problem?
All my adult life I've been critized about the way I keep my house. I'm talking about 27 years of being told I was a lousy housekeeper. Yes, my house looks lived in. It is cluttered but not dirty. Yes, it would never be in a magazine. But I can tell you where anything I need is, I can find anything I want, and it's just always been that way. But fear of criticism shouldn't invoke this terror. What am I so afraid of? This is a thought for internal dialog.
Gotta go haul hay.
much ado about nothing
Well, my sister cancelled her visit. Not once, but twice. Just 'something came up'. OK, no prob, but the house is clean...
We did have an outing Saturday night. Five of us went to Austin to the circus! I haven't been to a circus since 2001, and it truly was the greatest show on Earth. The most beautiful and talented animals I've ever seen. The death defying acrobatic stunts really did take my breath away. The showmanship, the pageantry, the lights and music! The hotdogs and cotton candy! What a show! Lots of steps and lots of walking and man it was hot, but I did it. No O2, no wheelchair. Of course, Sunday I stayed in bed most of the day on O2. Just went outside to move water sprinklers around. Pretty much the same thing today. Thank you, God, for Flolan, without which I wouldn't even be here, let alone doing what I do.
Subject-less
I don't really have anything to say of any import, hence the subject-less title. So I will ramble.
The impact of the hurricane on Louisiana is just impossible to believe. I can't even begin to imagine the horror those refugees are going through. Having gone through hurricanes when I lived on the Texas coast, it is familiar territory, but certainly not to that extent. I wonder about other PHers and their trials and tribulations. I've even wondered how I would have handled being in the same situation, but I think when the order came for evacuation, I'd have been gone in a heartbeat.
My two surviving kittens continue to grow and thrive and never cease to entertain. They are always hungry and eat like little pigs. They play so much that they must burn their food by hopping around. My hugely pregnant Tuxedo cat is NOT amused. I'm looking for new kittens sometime this weekend. I thought she was in labor earlier today, but nothing yet.
My poor enormous tiger cat (15 lbs) had dental surgery today to remove his remaining infected teeth. This cat is only 4 years old and will not have a tooth in his head. However, he has never been a skinny cat and I don't see that changing. I have to go pick him up now and when I do, I'll be taking another load of eggs for the clinic employees. I still have eggs out the wazoo. However, I'm not griping. My 5 big fat chickens are beautiful and healthy and I don't mind sharing the wealth. I remember when I first moved to the country in my previous life how entranced I was with farm-fresh brown eggs. They were, and continue to be, delicious.
The donkeys say 'HI!'.
A sad part of the hurricane business is that with all the weather, we didn't get a drop of rain out of it.
Rainy day lady
We are finally getting some rain! It's been steady and slight, but it's been going on all day, and the grass, trees and bushes all seems to be sighing with relief.
I'm proud to announce the birth of 4 new kittens! Tux finally dropped her load on Friday the 9th. She had them in an under-bed storage drawer under my son's bed. Two are smoky gray and two are black. All have a little white on them in small places. We have 2 males and 2 females, I think. This has been such a neat experience. I've never had baby kittens before. Well, not newborns, anyway. Tux is a good mama, laid back but ever watchful when we mess with the babies. I'm down to 1 kitten of the ones I raised an the bottle. The other one has been in the hospital since Thursday with an intestinal upset. Vomiting and diarrhea that isn't stopping. My vet is perplexed. All parasite tests have come back negative, so it must be viral or bacterial. I don't want to contaminate my other cats, so I don't know what to do.
I think the time has come to increase my Flolan. I've been taking it easy all week, but spent all day Friday scurrying around town running errands and walking property, and spent most of the day out of breath. Just getting down on the floor and looking under the bed for the kittens took my breath away. OK, I recognize the signs. I'm just dreading this increase because it will mean going up another vial of Flolan. Enough is enough, isn't it? I still haven't heard anything about any wall that is reached where the Flolan is no longer effective. I still hope and pray there isn't such a thing.
I'm waiting for the 16th for the CT scan to check to see if my pericardial effusion is gone. I sure hope it is - I feel very vulnerable being off my Coumadin, and will feel much more secure once I'm back on it.
So here I sit, this lady watching the rain and enjoying being alive.
Hurrah!!!
My pericardial effusion is gone! Technically it is 'resolved'. No more fluid in the sac around my heart. No more risk of heart failure. Well, at least from THAT cause... I received a glowing doctor's report and am back on Coumadin. I am also back down to 139 lbs weight-wise. Yahoos all around.
Now in the return to real life, we are once again threatened by a hurricane. This one they are calling a monster. I am so relieved to be away from the coast, but this one is so strong that it is predicted that by the time it gets here, it will still be a catagory 1 hurricane. I'm not worried about damage here. Sitting on a hill like I do, I won't flood if we get alot of rain. However, I have a LOT of trees, and if we get high winds I might lose a branch or two. Just hope they don't fall on the house. We went to the grocery store tonight to stock up for family evacuees, and there was no bread, no water, and one half of the aisle of canned goods was empty! I was amazed. We are 200 miles from the coast! Anyway, my sister and my daughter are both on their way here, with assorted cats and dogs, so we will have a full house. I'm looking forward to it. I love being with family. I have a generator, so if the power goes out, O2 and the fridge will be provided for. Oh boy, another adventure!
Hey, I'm supposed to keep a positive outlook, aren't I?
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