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Discussion Starter · #1 ·
Hope this finds you all doing well and keeping busy. Haven’t been on in a while and had a hard time finding how to post without hijacking another thread. I’m doing well and it’s been nice to read that most of you are healthy and stable. The social distancing hasn’t had any affect on me as I’ve always been socially distant. It takes the reminder message to get me on here to say hello. My health is good although my weight has dropped again. Seems to be a minor issue as I’m still as strong as an ox and can carry out my regular chores. Wifey has to go in for second back surgery, but we’re feeling positive that this one will do the trick. Trying to stay positive. Thanks for the sharing and the support. Peace!
 
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Good to hear from you!
Glad you are doing good. Hugs to your wife for the upcoming surgery.
I hear you on the social distancing although I missed my grandkids.
Take care,
Lyn
 

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Discussion Starter · #3 ·
Thanks Lyn,
It must be tough with grandkids. I don’t have any, but I feel your sadness and hope you’re at least getting some virtual visits and phone calls. Stay safe and keep well my friend!
Joe
 
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Hi Joe. Glad to hear you are holding your own during all this. Hopefully everything goes well during your wife's surgery. Docs say a positive attitude go a long way in healing.

Take care,
Lazylegs
 

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Discussion Starter · #5 ·
Thank you Lazylegs for the kind words and good wishes. Will keep you all posted.
Love and peace to you my friend,
Joe
 

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All the best to your wife with her surgery....it's good to read that you're doing so well, may it continue! Take care,
Jess
 

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Discussion Starter · #8 ·
Hi all! Thank you Wolf and Jess for the good wishes. Today was another challenging day for my wife. The surgery is done, but the wound has been draining too much. This second surgery increased the incision to 26 cm. and the drainage has the surgeon worried. He said if it keeps up or if she gets a fever to bring her back in for yet another surgery. This has been very difficult for her to deal with as she has not made much progress in this recuperation. He said it is not spinal fluid, but is part of how the wound heals. It should have stopped draining by now. As for me, I’m thoroughly exhausted! I don’t know how much longer my body can run on this limited amount of sleep. I take one day at a time, but the days start to run into each other when I try to finish the evening chores and I’m up way too late.
Our dog, Buddy, has dilated cardiomyopathy and is now on four different medications to help his heart. He probably doesn’t have much longer with us and the dog is very protective of wifey. You can imagine the stress. Well, I can. So the medication reminder works for all three of us. We all take our medications when the alarm sounds. Hopefully I keep a clear head and pass out the correct ones to each of us. So many little pill bottles! Take care and stay well. Peace! Joe
 

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Hi Joe,

You have your hands full. Take a look at the chores you do and try to tackle only the essentials right now. Getting rest whether it is sleep or not is more important for you.

I know what you mean about the medications. Thank goodness they have our names on them. It makes them much easier when I sort them after the pharmacy pick up.

Let your wife know I am hoping her recovery takes a turn for the better. My thoughts will be with you both.

Take care,
Lazylegs
 

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Goodness me, Joe, you've so much going on! Burning the candle at both ends is one thing but when you've got Lupus to manage it's something else without everything else you're dealing with.

I'm thinking of you all and hoping for better times for you all. Take lots of care and as Lazylegs said, grab rest when you can. Most jobs will still be waiting for you another day so don't even look at them!
 

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Discussion Starter · #11 ·
Thank you both for the suggestions. I am taking them to heart. I try to grab a few z’s when she lays down for a nap. I’ve read that a 20 minute nap can do wonders for you...in reality, I’m just as tired and really dragging after that short of a nap, but I guess it’s better than nothing. The wound looked ok when I changed the dressing so no need to reopen it. We’ll go in on Wednesday for another check up. I hope there’s no infection. I’m not a trained nurse and when I change the dressing, I’m really grasping at straws. It takes my awhile to get it all bandaged and taped right. Wifey is trying to stand still and is practically crying in pain when I finish. And I really don’t know what I’m looking for to diagnose an infection. The doctor said not to add any antibiotic cream, so I just dress it up and hope for the best.
Buddy seems stable. I’ll take him in tomorrow for a check up. I’ve been trying to squeeze in a short walk with him before it gets to0 hot in the morning and before wifey wakes up. I know he needs some exercise, but he is at risk for a heart attack and I don’t want to push him. He sleeps sounder now with the medication and that worries me too. His heart could stop anytime and I try to count his breaths per minute to monitor that. Wondering each morning if he will stir when I walk by him.
As far as the chores, I must be following your advice because I’m staring down at dirty dishes and I know there is laundry piled up in the laundry room. I just needed a breather and thought I’d fill you guys in. Thanks so much for the support! Joe
 

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That's quite a level of responsibility on you to look after your wife's wound. I take it you don't have community nurses like we do here? Silly question as I'm sure you wouldn't be doing it yourself if you did.

All the best for Wednesday and hugs to you all. Take care.
 

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Please rest when you need to or you will be no good to anyone. Hope all goes well with everything.
Keep safe
Wolf1
 

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I commend you for caring for your wife yourself. Some spouses can't handle it and if another family member won't take over the loved one has to go to a care center for continuing treatment. I hope the appointment went well.

Take care,
Lazylegs
 

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Hi Joe I hope things are going better for you and your wife.
Have you thought of using pill boxes? It is so much easier use. I double check myself when taking them.
Poor Buddy I hope he is doing good too.
My hat goes off to you. I don't think I could change bandages. I would end up gagging and almost throwing up. Yep I am a wimp.
Take care,
Lyn
 

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Discussion Starter · #16 ·
Thank you all for the support and concern. Wifey had to go back into the hospital because the drainage got worse. The surgeon had to put her under three more times to clean the wound and eventually close it back up again. The closure included a wound pac. For those of you that don’t know what that is, it’s a negative pressure device that helps pull out any drainage and hopefully speed up the healing. That whole process took over a week and when she eventually got home, we were back at square one with mobility and wound care. Also included in my care routine was a daily antibiotic infusion to keep out any more infection. We just hit 2 weeks tomorrow with this protocol and we’ve got another 4 weeks to go. Fortunately she’s sleeping through the night better and I’m starting to catch up on my sleep.
I try to eat right and squeeze in some tai chi when I can get up before her. Not always the case, but so far I’ve avoided a major flare. I did notice the beginning of the malar rash one day and this had me worried. I told myself not to panic and that I would just have to accept a flare if that was what was happening. The next morning the rash was fading and it seems to be gone now. I’m grateful for that.
Buddy is doing better, and he looks forward to his medicine regimen. I guess he is reminding me! Wifey does that too when the pain gets real bad. I have reminders set on my iPad, but I think the volume is too low to hear them.
Anyway, as things are slowly approaching a less hectic pace, I had a chance to read a short book. It’s called Torn by Justin Lee. It’s about the Christians vs. gay war with one young man’s desire to promote understanding on both sides. Quite enlightening. My son came out a couple of years ago and he had and still has a lot of anger with this topic. I wish he would read the book, but I doubt he ever will.
Sorry about the long absence. I was determined to reply before my monthly notice came out, but life got me distracted again. I hope you’re all doing well and staying healthy. I wish you all peace and many blessings.
Joe
 
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Hi Joe,
Good to hear from you and with news that looks like things are improving. It still sounds like you've got more to do than you can fit in a day, I wasn't surprised to read that the rash had surfaced. Fingers crossed you don't flare, it's incredible that you've avoided that with the amount of stress you're under.

What a time your wife has had. It must be a relief for you both that she is now able to sleep through..things are always easier to cope with when you can sleep I always think. Your wife and Buddy are lucky that they've got you to look after them, I hope you're able to look after you too, my daughter often says to me (with a raised eyebrow so I know I'm for it!) "you can't pour from an empty jug".
Take care,
Jess.
 

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Discussion Starter · #18 ·
Hey Jess,
That was one of the kindest and most supportive things to say. I guess that’s why I’m in this group. Anyway, it also sounds like your raising a very empathetic daughter. My daughter is a lot like that too. She must’ve got it from her mom. I’m very grateful for all the support and kindness I’ve been shown at this time and during my early years when life was a bit confusing.
Yes, it is a relief that my wife is sleeping well. Her improvement is slow, but steady. I try to keep her positive as much as I can and I’ve learned not to let her get me down...most days. The other days I do my best. I’m no angel in this journey, just trying to be understanding and respectful.
Thank you for the comments.
 
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It is good to hear you are beginning to see some light leading toward the end of the tunnel. Will the pack need to be removed? My thoughts are with you all for a continued recovery.
 

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Discussion Starter · #20 ·
The pack was there for about a week and there was more drainage when it was pulled out, but the surgeon removed it at the visit. Yes, she is up and about more now and tells me she is in less pain. So I do see the light and hopefully this episode will be the last with her back surgery. She never wanted to even have the second surgery, but the hardware failing made it more of a necessity. At any rate, there is a more relaxed feeling in the air and we all sense that she is recuperating. Even Buddy is less wound up. Thanks for the good wishes and kind thoughts. Joe
 
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