Coping
Patient and Caregiver Diaries
Patient Diary -- Marcia Beverly
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Getting packed and ready to go
Got Mom moved late yesterday afternoon. They were so good and the transition was smooth. She wants a couple more things from her room so I have to make one more trip. I've loaded all my pill boxes and packed the meds. This morning I finish packing and our daughter is taking us to the airport and pet/house sitting for us. I've arranged for some people to go visit her during the week. Soooooo, I think I can almost relax. I never do until I'm on that plane! Looking forward to sun, beach, new sites and fun. I just called and we do have wifi at the B & B right ON Duval Street. You know me, I like to be in the middle of things....hope their rooster doesn't keep me awake, but then I'll think of Bailey every time it crows! lol
I WILL rest and relax and have a few drinkies for you! Thanks for all your support. HOpe to post pics on FB. So look for them.
Hello again, 3 AM
Well, I think I've messed up the last day of vacation. I take my meds at 7 am, 3 pm, 7 pm and 11 pm, using my phone alarm. My phone died after I went to sleep and I just turned it off. I awoke at 2:45,, and thinking I missed my 11 pm dose of pills, I took them, thinking it was Friday. then I realized I took Thursday's pills and now I've taken a second dose. This is the oral remodulin and this amounts to a bolus if I were on IV. So I freaked out and was totally awake. It's 5:15 now and I'm beginning to feel lousy. Grrrrr. I looked 4 times for my phone charger in the dark before I just now found it and plugged in my phone. If I had had it charged this wouldn't have happened. Grrrrr.
Tomorrow (or should I say later today) we head for Miami. We are going to try to do an airboat ride in the Everglades. We are in Key Largo tonight...Beautiful hotel on the water. It is so strange to be in such a beach type atmosphere all week with virtually no beaches. We'd be in good shape if we fished or scuba dived. I think we could have tried snorkeling, but I was not quite up to trying. This has been a strange trip. Not what we expected. Very nice, but different. Key West was kind of like New Orleans, with that busy, carnival atmosphere. Not at all laid back, like we had heard. SPI (South Padre Island) is laid back and that is what we are used to.
Kensey
Wow, I just read Helen's entry and I miss my Maggie and Beau so much. Just last summer Maggie, who was about 8, got sick suddenly and died within 10 days. She was such a great dog and I didn't even realize how great until we got Kensey.
We acquired Kensey in December from the All Border Collie Rescue of Texas. She's about 18 months and is a border collie/aussie mix...Maggie was an Aussie and Beau was border collie/spitz mix. Kensey is great and I thought perfect, but now that it has been almost 3 months, things are not so great. She has been afraid of men since the beginning. Some asswipe really did a number on her. She flinches from Steve, barks at him and generally doesn't warm up to him. And he hates it. He tries to not get mad but she pissed him off last night and wants her gone. He's back peddling today, but that doesn't fix the problem. I don't have a cyrstal ball to tell whether she will ever be nice to him. So I think she will have to go back to the rescue folks. Sad, but I don't want the stress of hiim being mad and I can't make her warm up to him. I don't want to invest a lot of money and time and still have her like this in two years. Sad, but true.
Vaca and kitty
I came to catch up and by looking at my last entries, I have quite a but to tell.
We enjoyed Key West and didn't get to see any of Miami...Traffic was too awful and Steve didn't want to tackle it anymore so we returned the car and even that took an hour an a half(for a 30 min project!). We arrived home and Mom had improved drastically but decided to stay at the rehab until that Thursday, which gave her 2 weeks of therapy. She's doing fine now and walking without the walker. But I'm still trying to find out what happened. She has another UTI and so I took her to a urologist, who is running tests. Cardiologist is next, since they dxd her with CHF. It is under control, but they say it could come back any time.
About 3 weeks ago we woke to Cheeto, the cat, crying. He couldn't move his back two legs. I took him to the vet and she said her cat had the same thing--a blood clot in his lower aorta, which cut off all circulation to his lower half of his body..Nothing she could do. So he's gone too. Kensey was returned a couple of weeks ago. It sure is quiet around here. I'm not sure I want a dog anymore. Again, I didn't realize how much I liked Cheeto until he was gone...boooo
Last week we got to go to Cabo San Lucas with hub's sisters and their hubs. One sis treated us all to the trip. There were 12 of us. It was so much fun and beautiful in a very deserty way. Very dry but the ocean was gorgeous. And it was cool at night like California, not humid like the Gulf Coast. We left Thursday morning and returned Monday night. The last night was a sunset dinner cruise on a catamaran. It was great and gorgeous except for not being able to drink and getting one of my tortuous remo attacks after dinner. I had to just suffer through it and go clubbing with them afterward because it was too far to taxi back to the hotel. I haven't had any energy or motivation to do anything all week. In fact, I'm missing a retreat this weekend because it is too much. I have my PH SG meeting tomorrow and didn't want to have to drive back and forth.
Well, that's it for me..Oh, I had my annual RHC somewhere in there and my pressure was down to 59 from 68 last year. I have my follow up visit Monday and I'll have more details. Last year I was in the middle of moving Mom and totally stressed out, so I'm sure that's why my numbers were so bad last year, but it is encouraging that they came down a bit. That's the biggest drop since I was dxd. We are expecting some hotter weather and already have the A/C back on. As for baseball, the Rangers are kicking butt and it's so exciting to welcome in another baseball season.
Sure is quiet around here. sniff, sniff
October update
I know I haven't been here in forever...Blame FB..instant gratification. I've been doing very well all summer. Because of 70+ days of temps over 100, I had to stay in most of the summer, but I had plenty to keep me busy. Yesterday I went for an echo and office visit. I've been having some fatigue and palpitaions in the last month so they moved my appt up a month. My walk was 529 meters, so that is still doing well. I'm holding steady at 14.75 mg of oral remodulin and all the meds seem to be working. My nurse suspects Im doing too much but I really try to do only one thing per day and rest the rest of the day. I really need to go walk the park 3 times a week too and now that the weather is nice I can do that.
I have my cousins coming next week. We haven't had company in forever and they want to visit Mom. She is doing well and as long as she doesn't fall down she's good. Next Saturday we have a football game in Austin and my cousin, Curtis, is going with us. His wife and sister (my cousin I haven't seen since high school) are taking Mom to a Bluegrass Festival here in our historical park that day while we are gone, so everyone should be happy. They know I can't do a whole lot so they will help with cooking. The cousin I haven't seen and her husband are staying in a hotel, which will help me a lot.
Our November PH FUnWAlk/Run is NOv 12th and we are working on that. Hopefully we can pull off the run. First time we've done that and getting able bodied folks to help has been difficult. But my younger daughter and her boyfriend are coming and they can help and hubs will do what I tell him he must do! Older daughter isn't working on Saturday (or any other day) so they will be there too.
Erin is back in college, taking 12 hours and living off her pell grant. The boys started Karate this week with a starter fee from Mimi (me). Susie and Javi are moving in together. She LOVES the new apt she found with lots of ammenities and gated. She can save enough money to possible go back to school too. Ziva, the kitten, is now bigger than Cheeto and curled up on my desk as I type.
With the cooler weather (still no rain) this is my fave time of year and I'm doing my best to enjoy it Still a few things to do before company comes, so off I go...... Love you all, Marcia
PS...the main worry I have now is Sheila Williams, our Fort Worth co-leader. She had a dbl lung tx a year ago, but is having some rejection issues. Last week they had to remove a section of the bad lung and now she is fighting a bacterial infection. I saw her yesterday and she said she was NOT doing well. It was so sad watching her struggle to breathe. I couldn't stay long but I took her a prayer shawl and told her we love her and are praying. The look in her eyes made me wonder if that was the last time I'd see her. It was all I could do not to cry in front of her. God bless her.
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