PALS ROLL CALL NEW THREAD (PALS ONLY) [Wednesday or whenever]

[blitzc]

Oh, Lonna, I'm so sorry to hear of your recent ER episode. It's so good that you had help right away. Please take care!

Bill,I hope someone can get your lift delivered soon. Peope have no sense of urgency with PALS.

 

[KevinM]

Hi all. Wednesday check in for those who can. I miss the interaction quite a bit.

We made out fine here in Tallahassee with no real effects from TS Elsa. I know it looks like the storm is very near us, but we are west of its path and it is so lopsided to the east that we just had a little morning rain and light breezes. The west coast got lashed pretty good, and I expect as it moves NE the communities along the eastern seaboard will feel it much more than we did.

I fear this was just a warmup pitch, though, and we might have a few more worries over the next 2-3 months. I hope I’m wrong. There really is no totally safe place in the U.S., so basically it’s pick your poison.

Hoping for moments of peace this week for each of us. Best, Kevin

 

[Nikki J]

Kevin I feel that way at the start of the snow season if we begin with a small storm. Will we get a series of heavy storms to follow? We were all traumatized by the winter of 2014-2015 which began reasonably enough until the end of January and then it snowed for 6 weeks pretty much every day. Hope your season is mild

 

[lisa g]

Glad you weren't impacted Kevin. It looked a lot worse than it was. We postponed leaving to back to Florida until Friday so we'll miss any bad weather. Hoping hurricane season is mild for us this year.

 

[EricInLA]

Just so we wont feel left out of all this natural disaster talk, Mother Nature threw us a bone today - a 6.0 magnitude earthquake in Central California, just North of Yosemite. I was in Yosemite 2 weeks ago! Good timing, Eric.

In other news, I just had my new BBQ delivered! I'm very excited. I'm going to enlist my son (the one who knows how, and enjoys, putting things together) to help me assemble it. He'll probably do most of it. I should be grilling by this weekend.

 

[wmilo]

July 22nd is the new delivery date for the lift. Haven't made any effort toward getting an accessible van. Approach-avoidance conflict.

My sister is coming to visit next week. Will get accessed on Wednesday for a new infusion cycle, but should be fine.

Best to all.

 

[lisa g]

Hang in there Bill, 22nd isn't too far away. Enjoy the time with your sister.

We're just crossing the Florida border. It will be good to get home after 3 months, jump in the pool (well maybe slide into the pool jumping isn't happening) then get ready to start up another round of radicava on Monday.

 

[blitzc]

Hey everyone! Checking in on a Saturday. Better late than never, right?

My husband and I went for a short 5 day trip to Nasville and Pigeon Forge. Too many people in Pigeon Forge but the Smokey Mountain National Park was beautiful. Nashville was crazy but fun with great food and a music.

I'm having surgery Monday for a supra pubic catheter and feeding tube with Mic-key. Ill need to stay overnight for observation due to low pulmonary function. They told me to bring my own Trilogy and cough assist for usage.

I really hope this catheter helps with the exhaustion from transfering to toilet all day. Plus I plan to drink a whole lot more than I currently do. I limit liquids everytime I need to leave the house, travel, or need to plan for someone to help me.

Hope everyone is well!!!
Have a Blessed week.

 

[Nikki J]

Cathy I am happy you got away. Best of luck on Monday and hoping for a swift recovery for you. The suprapubic catheter is something I am semi planning so anxious to hear all about it!

 

[Krismn]

Cathy, I hope all goes well with the procedures and I wish you a smooth recovery. I don’t think I’m too far behind you on the catheter. I can relate to the exhaustion from being transferred 4-5 times a day and limiting liquids when going out

I was able to take a road trip to Coeur d’Alene, Idaho with my sisters last month. It was so beautiful and I had so much fun with them. It’s always hard to see them go. I posted a couple of pictures of the trip and one from an outing to the waterfront in Tacoma, Wa

I hope everyone is doing ok.

 

[lisa g]

I just heard from Cathy's husband, surgery is completed with no complications. She's resting and will spend the night in the hospital.

 

[KevinM]

Hi everyone. As always hoping to get some check-ins from as many of us as possible.

Things are stable here in N. Florida, though a bit soggy from daily showers. It has kept our summer temps in the 80’s, though, which is unusual. I’ll take it! We have rented a cabin in the NC mountains the first week of August, so looking forward to that.

Yesterday our 27-year old daughter and her beau flew to Peru for their weeklong hiking/camping trip ending with a tour of Machu Picchu. We are very excited for them, but hope they handle the altitude okay. Following along on the map every day!

Please stay safe everyone. The Delta variant is exploding, so buckle up. I fear many avoidable hospitalizations and deaths are ahead. Best, Kevin

 

[Statius@]

Checking in from Iowa. Nothing new. I have had bleeding where they replaced the original peg "plug" with a balloon about a month ago. It seeps out around the opening in small amounts, no pain. My ALS provider at the VA is frustrated with GI, who believe the continued bleeding is a consequence of the blood thinner I take (Eliquis). It's annoying but doesn't interfere with flushing or feeding, so I guess I have to live with it. I'd be curious if anyone has experienced anything similar. Looking forward to my Tucson daughter's visit in August.

Ed

 

[EricInLA]

Hi friends - No summer rain showers here in SoCal. Just drought, And wildfires. Fortunately no fires in Los Angeles, but it's not looking good in parts North.

I love the pictures from Coeur d'Alene. That's always seemed like an idyllic summer destination. Maybe one day. Though I'm not complaining - we leave for the big island of Hawaii on Sunday. I'm very much looking forward to it. We get one last hurrah with all 3 boys before two of them go off to college shortly after.

 

[lisa g]

Eric sounds great. A few years back my sister and I did a girls trip to the big island for 2 1/2 weeks. We did so much exploring and snorkeling. It was wonderful. Enjoy your time with your family.

Nothing much new going on here. I'm spending alot of time in the pool which just puts me in a better mood. The only thing is I'm in the middle of my Radicava cycle so it means accessing and de-accessing my port daily. I'm alittle sore but well worth it for pool time.

Hoping no one is close to all the wildfires and staying safe. Have a good week.