Message for You

General personal-stories
1

Some time after surgery I bought myself a survivor's gift. I was swinging wildly between 'wow you totally rock for having made it through' to 'what the *@#! bleep bleep tantrum spewings'. It was ugly. And confusing to those around me.

I saw this one day and it hit home for me. Life wasn't the same but I was still alive. The hard knocks didn't kill me - they just rocked my core. But I could rebuild from here. Like a tree. Twist and turn, dig deep, grow, expand and contract...a perfected dance with the environment. I'm not saying it cured me. Far from it. But I put it where I would see it in the hopes that during one of my 'bleep bleep' moments I would stop and remember how far I've come. And in that moment I would reconnect to the appreciation for what was and patience for what is and remember I'm still alive.

I'm not sharing so you go out and buy a tree. I wanted to remind you that although you find yourself in some hell today, you are strong and courageous and you truly rock.

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2

Harlylena, thanks so much for this! And for kicking off a memory of a tree that grows out of the rock somewhere along the upper coast of California. I think… We do take all the force life throws at us and continue to adapt. Thanks again!

3
  • Harlylena, I so appreciate your analogy of the tree and strength. I'm in great need of encouragement tonight. I'm the survivors wife. I'm so tired and weary, missing our past life before this nightmare shook the very core of our lives. My husband is the sweetest man and it's so hard to see how he struggles. I have to be the strong one and I care for him and our farm while taking him to therapy twice a week which is an hour and half drive one way. I also work. It's been 10 months since his rupture and we are so blessed to have survived it. I'm thankful to God everyday for his help and that we're home after 65 days in hospitals (open heart/2 valves replaced just 2 weeks before the rupture. I just have so many questions, like is it possible for him to ever drive again with peripheral vision loss (mainly on the right side). Will the throwing up ever end, he's having to relearn how to read all over again too. He has aphasia without agraphia (can't read, but can spell and write words) weird huh. Does anyone else deal with throwing up? I know that we have so much to be thankful for but sometimes I feel so lonely and have anxiety attacks...hard to forget everything I've seen through this. We are adjusting on long-term disability and SSD, he still thinks he may be able to return to work...35 years as an electrician at a power plant. Hope I haven't rambled on to much. I just need to know I'm not alone and I want to remain positive and believe that he can recover with little deficits. My faith gets me though day to day. Any advice is greatly appreciated. Thanks for letting me vent.
4

Hi SW, thank you for your post. My husband too is 10 months post rupture. And yes to the still throwing up. It is now down to roughly three times a week. The meds come and go but soda crakers on waking (yes, crackers in bed!) and ginger tea for breakfast have had more effect than any meds. We are learning things that appear to trigger it, but sometimes it is just out of nowhere. For a mercy, there is no nausea, just 30 seconds warning that it about to happen. My husband can read but still has double vision so he does not read for pleasure. No driving yet, because of vision and also cognition. I would be interested in more detials about how you have managed the throwing up. Any suggestions would be welcome.

5

Judy,

Thanks so much for your reply. I'm so sorry that your husband is having this problem also. It's nice to know that we're not alone and that someone else understands. The doctors don't seem to know why. Thanks for the crackers in bed advice! I'll have to check to see if it's ok for him to have the ginger tea. He's on blood thinners due to the heart valve replacement that he had just prior to the rupture. It seems everything effects his INR...especially things that start with G...garlic, ginger etc. We had also tried several meds, but like your husband he doesn't suffer from nausea til it hits. It's unpredictable most the time, but we have found that sudden movements like bending or turning...especially things like stacking firewood or attempting to do yard work, feeding the cows seem to really trigger it. On days that I know that he's going to be more active, I give him a zofran. Not sure if it helps or not. We just try to be prepared if or when it hits. I pray that this passes soon and not something we have to always deal with. Like you know, we have enough on our plates to deal with. Thanks again for your advice and post! Best of luck to you and your husband. If you ever need to vent, talk or just ask questions feel free to contact me. My email is ■■■■■■■■■■■■■■■■■■■■■■■■■■. Prayers for you and your husband!

6

Hi Survivor's Wife, I felt your sadness and confusion through your words and just wanted to reach back with a virtual hug. I'm the survivor so can't relate to the hurt and confusion you caregivers experience as you watch the slow hell that unfurls in those you love. First, congratulations on his survival! From two major surgeries! I believe you mentioned it's been 10 months. That's not long ago. As you read throughout this site you'll notice there are many things the body relearns in time. Slowly. Some things change.


I did want to say to make sure you cut and paste your comment onto a new discussion so that it's not buried hidden here under my post. You have questions that others may have information on but won't see here. Also, up in the search box, type in "Edwardo". His wife is a survivor and if I ever needed a caretaker in my corner he's the one I'd want. Plus he is amazingly helpful and kind and a moderator here. Huge hugs to you and your husband. You can both handle this current chapter in your lives. Be brave and strong as you've been so far.


survivor's wife said:

  • Harlylena, I so appreciate your analogy of the tree and strength. I'm in great need of encouragement tonight. I'm the survivors wife. I'm so tired and weary, missing our past life before this nightmare shook the very core of our lives. My husband is the sweetest man and it's so hard to see how he struggles. I have to be the strong one and I care for him and our farm while taking him to therapy twice a week which is an hour and half drive one way. I also work. It's been 10 months since his rupture and we are so blessed to have survived it. I'm thankful to God everyday for his help and that we're home after 65 days in hospitals (open heart/2 valves replaced just 2 weeks before the rupture. I just have so many questions, like is it possible for him to ever drive again with peripheral vision loss (mainly on the right side). Will the throwing up ever end, he's having to relearn how to read all over again too. He has aphasia without agraphia (can't read, but can spell and write words) weird huh. Does anyone else deal with throwing up? I know that we have so much to be thankful for but sometimes I feel so lonely and have anxiety attacks...hard to forget everything I've seen through this. We are adjusting on long-term disability and SSD, he still thinks he may be able to return to work...35 years as an electrician at a power plant. Hope I haven't rambled on to much. I just need to know I'm not alone and I want to remain positive and believe that he can recover with little deficits. My faith gets me though day to day. Any advice is greatly appreciated. Thanks for letting me vent.
7

Harlylena...it is lovely and you described it so well...you are such a creative writer... so enjoyable...

And, your special selection is beautiful...

My artiste/jeweler did his selected "tree of life " for my pendant he designed from the available angio images..when I posted it last March...I used my old (corporate) med codes...during his 'construction, they would do wax samples...before finalizing steps..However, I want to add a small ruby...or garnet to represent my "ACOM not present"... which was in my initial diagnosis as "ACOM w/no aneurysms"

I have had tremendous compliments/questions from strangers / other; and, recently, I was having some appraisals done on some ivory sculptures (at least as old as me)...and, in the midst of it, the appraiser stopped and asked me about my pendant...she said it was energizing...

Your creative writing far adds to energy...thank you for sharing it

8

Survivor's Wife...

I can only imagine what all you caregivers go thru...from the initial emotional impact...to the continued...

and, the exhaustion while you work and all the rest...can only pray you have some family/friends who may be able to help out some times... Can you possibly make changes in all you do...by hiring intermittently or longer...based on all you are able to do...financially...looking at it for short to longer term...depending on your ages/finances and whatever your plans have been... It is a major shift/change in our lives...

RE: driving...what has any doctor suggested / explained? Will he have to be re-tested? Has any doc/hospital notified your state DOL for its current status? (yes some things in some states can be questionable) ...

His throwing up? Again, what have the doctors explained?

Of interest...my personal source is munching on non-crystalized ginger...

Oddly, I have been doing more research on cranial nerves... and, in particular the Vagus (CN10) ... my long interest in this is because the Vagus...has three main branches...the brain, the heart and the abdomen...and, each main branch has multiple branches around specific organs...

I have posted on the "resources" category, cranial nerves related to our vision...

I hope/want to do that to the rest of the cranial nerves...and, by an oddity, have been working on the vagus today.. .I have to turn away from that til I learn more...on "vagus nerve injuries"..

Except for CN 1 (olfactory) and CN 2 (optic)...the rest are in/around the BrainStem...and, that is passed by some of our main arteries... I am slow at each piece I do...and, I have not cleared up so much of my life/house...and, I am driven (addicted?) to learning...what we are not taught/explained from diagnosis to...discharge...to potential recovery...There is so much I cannot/do not do...I am limited on changing subjects/ concentration/memory... to noises, and have some vision issues...which I watch closely for f/u tests...to assure safe driving...

Have the docs suggested/recommended the neuropsych testing ...to help select therapies?

The very best I can really suggest now...is finding a way to hire what help may give you some rest...some social time...mostly rest...you must take care of your own health...to maintain your own health..

Prayers for each step...


survivor's wife said:

  • Harlylena, I so appreciate your analogy of the tree and strength. I'm in great need of encouragement tonight. I'm the survivors wife. I'm so tired and weary, missing our past life before this nightmare shook the very core of our lives. My husband is the sweetest man and it's so hard to see how he struggles. I have to be the strong one and I care for him and our farm while taking him to therapy twice a week which is an hour and half drive one way. I also work. It's been 10 months since his rupture and we are so blessed to have survived it. I'm thankful to God everyday for his help and that we're home after 65 days in hospitals (open heart/2 valves replaced just 2 weeks before the rupture. I just have so many questions, like is it possible for him to ever drive again with peripheral vision loss (mainly on the right side). Will the throwing up ever end, he's having to relearn how to read all over again too. He has aphasia without agraphia (can't read, but can spell and write words) weird huh. Does anyone else deal with throwing up? I know that we have so much to be thankful for but sometimes I feel so lonely and have anxiety attacks...hard to forget everything I've seen through this. We are adjusting on long-term disability and SSD, he still thinks he may be able to return to work...35 years as an electrician at a power plant. Hope I haven't rambled on to much. I just need to know I'm not alone and I want to remain positive and believe that he can recover with little deficits. My faith gets me though day to day. Any advice is greatly appreciated. Thanks for letting me vent.
9

Harlylena,

Thanks so much for your kind and thoughtfulness. I hope I posted it the right way in the discussion. I'm not quite sure how the site works yet. Thanks also for letting me know about Edwardo. It's comforting to know that someone else can answer my questions or give advice. If nothing else, encouragement! Hugs back to you!

harlylena said:

Hi Survivor's Wife, felt your sadness and confusion through your words and just wanted to reach back with a virtual hug. I'm the survivor so can't relate to the hurt and confusion you caregivers experience as you watch the slow hell that unfurls in those you love. First, congratulations on his survival! From two major surgeries! I believe you mentioned it's been 10 months. That's not long ago. As you read throughout this site you'll notice there are many things the body relearns in time. Slowly. Some things change.


I did want to say to make sure you cut and paste your comment onto a new discussion so that it's not buried hidden here under my post. You have questions that others may have information on but won't see here. Also, up in the search box, type in "Edwardo". His wife is a survivor and if I ever needed a caretaker in my corner he's the one I'd want. Plus he is amazingly helpful and kind and a moderator here. Huge hugs to you and your husband. You can both handle this current chapter in your lives. Be brave and strong as you've been so far.


survivor's wife said:

  • Harlylena, I so appreciate your analogy of the tree and strength. I'm in great need of encouragement tonight. I'm the survivors wife. I'm so tired and weary, missing our past life before this nightmare shook the very core of our lives. My husband is the sweetest man and it's so hard to see how he struggles. I have to be the strong one and I care for him and our farm while taking him to therapy twice a week which is an hour and half drive one way. I also work. It's been 10 months since his rupture and we are so blessed to have survived it. I'm thankful to God everyday for his help and that we're home after 65 days in hospitals (open heart/2 valves replaced just 2 weeks before the rupture. I just have so many questions, like is it possible for him to ever drive again with peripheral vision loss (mainly on the right side). Will the throwing up ever end, he's having to relearn how to read all over again too. He has aphasia without agraphia (can't read, but can spell and write words) weird huh. Does anyone else deal with throwing up? I know that we have so much to be thankful for but sometimes I feel so lonely and have anxiety attacks...hard to forget everything I've seen through this. We are adjusting on long-term disability and SSD, he still thinks he may be able to return to work...35 years as an electrician at a power plant. Hope I haven't rambled on to much. I just need to know I'm not alone and I want to remain positive and believe that he can recover with little deficits. My faith gets me though day to day. Any advice is greatly appreciated. Thanks for letting me vent.