CALS Roll Call Continued

[Buckhorn]

Wish, I'm glad to hear the PEG has worked out well for you. It has for us as well, although we are at this point using it only for occasional supplements and a daily flush with water. When my husband asked me, "tell me again why we are doing this", I told him because it would be extremely difficult to watch someone die of dehydration/starvation (NOT a quick death) ....... that it was a gift to me. Dave has always trusted me for his healthcare decisions and advocating for him medically, however - it has been easy because he does not fight me. Not to say that I would force many decisions upon him, but a slow death from dehydration/starvation would be a horrible thing for a loved one to endure (and, I know that many of you have done just that).

So, we are still in FL and have extended our stay for the 1st week in March & a slow trip home with a side trip to Savannah, GA & Hilton Head, SC. I had some Chase award points to burn, so I thought I should use them while Dave is still able to enjoy travel.

Dave has exceeded every expectation I have had for him so far! His tolerance for activity has been great, and I swear his overall decline has slowed due to mental/visual stimulation and being outside almost everyday. I'm not saying that transfers, toileting or our inventive/adaptive showering has not been challenging or tiring, but - the opportunities and rewards have been great! I have become much, much better at steering the portable Hoyer (Advance) thru narrow doorways & steering Dave's Permobil; I knew this trip would be a "do or die" situation as far as that goes & I have done almost all of it without help. Being a pretty determined person by nature, I was hopeful that I could handle most situations, but I was quite apprehensive about the "unknown factor". Well, so far - so good, and I hope I have not just jinxed us!!

I want to send a big collective hug out to all CALS and hope you are adjusting & surviving as best you can. I have faith in you all - you can do it, and whenever you need support, suggestions or just someone to "talk" to, come to us. Love & hugs!!

 

[Narrowminded]

Wish, so good to hear the PEG is working well for your BF and that he is sleeping well for the moment. Yes, those extended times without sleep really do a number on the body and soul.

Buckhorn, so happy you checked in, I’m glad this trip has been a success thus far. I’m sure Dave is so thankful to have you willing to go through this for him. Praying the rest, along with the trip back will be just as successful.

Life here for the moment is pretty status quo other than nursing challenges you can see on my thread. But don’t tell anyone, I don’t want t jinx it.

Hugs,

Sue

 

[Herdaughter]

Buckhorn, I’m so glad you are having a good time on your trip. Do you think the warm weather is helping your PALS? My mom gets so cold. I imagine she would feel much better in a warmer climate if she would let anyone help her.

For the first time, I stayed home when my mom went to clinic - and it wasn’t because we live in different cities. It’s heartbreaking.

 

[Narrowminded]

Her, hugs to you. I know this cannot be easy. Praying for resolution.

Sue

 

[Chincoteaguer]

I am certainly experiencing sadness but the real monster for me is fear. While I adjust to each level of progression I fear that It might be beyond my capability to cope. I try not to dwell too much on tomorrow. Not new but worth repeating.

It also helps me to have moments during the day that allow me to focus on other things. Small things like: managing my email, paying bills, taking a shower, shaving, and getting into bed at night. I have exhausted my ability to escape by bingeing on Netflix. Fortunately my wife (PALS) has not. I cannot enjoy reading like I used to although I keep at least three library books handy.

Most of all it helps when I remind myself that the girl of my dreams (we celebrated our 50th anniversary this year) is still here and can still give me her beautiful smile.

 

[Chincoteaguer]

Janis, with any kidney issue you should not start MTX. I'll bet you haven't been through all the other possible therapies.

Confused. By MTX I assume you mean methotrexate when referring to kidney issues. Also I click your associated link but did not find references to kidney issues. Probably my bad. I get confused sometimes.

 

[affected]

@ Chincoteaguer that's exactly why we take things a day at a time, and when that's too much just do an hour at a time.

It's not that much comfort to know that you will make it when the fear is right there, but you will. I did 3 main things to cope - I used peer support online, I saw a counsellor regularly and I took antidepressants. It stopped the feeling of a constant scream happening inside me.

 

[lgelb]

This is from the methotrexate label:
If you have kidney problems or excess body water (ascites, pleural effusion), you must be closely monitored and your dose may be adjusted or stopped by your doctor.

Generally, for P/CALS, systemic therapies that require close monitoring/dose adjustment would be a last resort. So I was suggesting trying other resorts first, if that makes sense.

The link was to suggest other possible therapies, less toxic, less problematic.

 

[Chincoteaguer]

@ Chincoteaguer that's exactly why we take things a day at a time, and when that's too much just do an hour at a time.

It's not that much comfort to know that you will make it when the fear is right there, but you will. I did 3 main things to cope - I used peer support online, I saw a counsellor regularly and I took antidepressants. It stopped the feeling of a constant scream happening inside me.

thanks for that. I have not felt the need for anti-depressant or anxiety medication but I do have a strong drink of alcohol occasionally. There might be a future for these helpful drugs so I am keeping an open mind.

 

[affected]

It's Wednesday morning in Australia and we are having a very wet March so far.

If you haven't been posting the last couple of weeks but are reading, please just give a one line hands up post here.

I created this thread so that we could keep in the loop when we are not up to really posting a lot. I think 10 characters is the minimum required to create a post so

hand raised!

will cut it as a bare minimum

 

[wishmobbing]

Calling in from our holiday in France. It's going pretty good so far, even without a lift and a hospital bed. Of course progression doesn't stop for a vacation and it's too damn fast for my taste.
We were planning on visiting Barcelona from here but canceled the idea because it's five extra hours in the car. We're not able to start until noon, because it's us and because mornings take long now.
The food is great, yesterday has been one big feast and we'll continue in that course today. My PALS is digging in and topped of yesterday's dinner with a bit of red wine through the tube because drinking more than a few drops is getting more and more dangerous.

 

[Jrzygrl]

Checking in on this snowy morning here.

I read most every day, but don't post too much. I write things in my mind, but never seem to have the words when it comes to "putting pen to paper". I'm sick of this disease. It just sucks.

I need some sunshine and warm weather too.

Hugs all around!

 

[scaredwifetx]

Checking in and catching up on posts. This dang disease is just like the weather for some. It just won't let up.

Steve is having a hard time adjusting to the loss of his hands. I feel so bad for him. He's been a trooper so far and never complains. I remember when he was first diagnosed and so angry...he said he would find a way to end it before he lost his hands. He now takes each loss and acts so positive...yet I know it must be killing him. His voice is becoming so weak and it's very hard for him to find enough air to talk. So...We take each day and try not to think about tomorrow.

I have started working from home more. Not because I am really needed here during the day. My BIL and son take care of him. I just can't seem to be able to put on a fake smile anymore. I never thought I could be stuck at home for longer than a day but now it's where I am the happiest.

I send you all wishes of some peace and happy moments this week.

 

[Herdaughter]

As I read through these posts I hear some of the strongest people I “know”. The level of care, both mental and physical, is beyond anything I’ve ever witnessed before. I’m sending virtual hugs and as much tranquility as possible, to all of you.

The relationship situation with mom still remains horrible. I haven’t spoken to her since the 20th of February even though I’ve reached out. I am grateful to her amazing friends who keep me posted on her every move. She is still insisting on living alone (at least until June) even tho she’s in a wheelchair full time and can barely lift a plate, let alone cook for herself. Palliative care has been called in but she refused it the first time around. They are supposed to try again this week. Wish them luck.

Meg

 

[Narrowminded]

Deb - sending huge hugs. The losses are so hard to take. And I do understand losing that smile. Of course they say fake it till you make it. However there is only so long you can fake it. If you haven’t had some good me time, you need to do so. It will help with the smile. Know my thoughts are with you.

Meg - I am so very sorry for the issues with your mom. I know the worry you feel and the complete loss you are at to do anything about it. Hopefully this time she will let palliative care in, if nothing more than to make sure she is ok. My thoughts are with you as well.

We’re pretty much status quo as far as Brian is concerned. Other issues going on, but they’re in my thread.

Holding Pete close along with his wife, And Paul and Ferd. My heart breaks for them.

Hugs to all,

Sue