Can y’all believe I’ve made it nine years since I ruptured? BH had to remind me ROFLOL.
Man oh man! It’s been a roller coaster ride that’s for certain! I’ve got more CT’s under my belt than I can count, four repairs in seven years and either 12 or 13 angiograms total, and double that or more MRI/As. If all goes well, I won’t ever have another angiogram and I don’t have my MRI/A scheduled until next year!
Every day since I got out of NSICU I remember Trouble our old Lab who I credit with saving my life since she’s the one who woke me up when I passed out on the stairs and then Dr, Stacey Quintero-Wolfe who understands my brain better than anyone here on God’s green earth. Then there’s all the folks who helped carry out her orders - Mr. William the PA she had back then, Flora and Kenna my favorite RNs, the Heathers, Tiffanys, Bobs, the brown shirts (the folks that watch the machine and make sure you’re still breathing), the four musketeers (residents) and not to be forgotten ever, Dr Shaw who sat down and spoke to me like I was a person and not something to be studied, Dr. Walker who shared that she too was once a patient in NSICU and the wonderful EB, a med student who wanted to become a doctor so she could teach. EB also let me borrow a pen with insistence I return that Bic so I could make a birthday card for BH. She and Suzanne, another wonderful RN, gave me index cards, scissors and a glove to cut up. Suzanne was quite concerned I may cut myself LOL and stayed with me whilst struggling to get my hand to make the correct movements with the scissors. Now I have Ms. Ryann NP to keep me straight. I love them all!
I cannot forget BH who stuck with me all these years and learned to stop hovering and let me try to get skills back. I know it was a long stressful and scary time for BH. How does one thank a partner who has been there and not turned their back? We’ve been together now 27 years and I’m grateful for each and every day.
A year after I ruptured, I came here and have gotten the best support ever! For someone in a rural area it’s simply amazing as I’d never have gotten it without y’all. Thank y’all from the bottom of my heart for sharing your journey and allowing me to share mine!
I think what’s most amazing is how time speeds up. I’ve been hanging around Ben’s Friends for over 6 years and it doesn’t feel half that time.
This is a great question! For me, I remind Mrs D that marriage is about this sort of stuff. Sometimes it’s me that needs looking after, sometimes it’s her. I’ve seen my parents doing the same dance, sometimes one leading and sometimes the other. To be able to alternate is the thing. You’re only really in trouble when you’re both needing help at the same time!
The fantastic thing is that you’re as well as you are and you’re able to give back somewhere like this. I have to say, I love your Sunday welcomes (even when they happen on a Monday )
Nine years? That’s awesome! I had the pleasure of meeting you in person before covid, and you were simply unforgettable. I’m sure that you completely charmed the staff at the hospital even right after your rupture.
I did get to make a joke up that I thought so hilarious I couldn’t stop laughing…
“What do you get when you put a hemorrhagic stroke survivor and an ischemic stroke survivor together?” I forget. BH came up with “And so do I” just to add to the joke.
I remember meeting you as well Ms. Sharon! Did you ever make the peppermint oil salve? Can’t say I charmed the folks in NSICU…when I was finally moved to a room with walls, I nixed the television to the angst of a few. It gave me a headache. I did ask one day if they’d use the Star of David, Sign for Shiva (is there one?) or anything else besides blessing me with the sign of the cross multiple times a day. Only one of the residents got it so I named him Dr. Catholic. There was another I named Dr. Patches because he had holes in his white coat. I believe I suggested he go home and practice his stitches with some patches and let his little boy color them with fabric paint. He couldn’t afford a new coat.
Next time we meet, I’ll tell you one of my Dad’s favorite jokes about the Priest and the Rabbi who were very close friends and was in a car accident on a back country road….
9 years, congratulations. Every year is one to be celebrated.
And congrats to BH too, often dealing with ‘Us’ can be a challenge in itself. God knows how my BH puts up with me sometimes
I have a 5 mm multi-lobed aneurysm on the LICA bifurcation. She stopped counting at 24 daughter sacks, think blackberry rather than blueberry. Apparently they’re rare, and to have so many is even more so. She used my pictures at a conference down in TX that weekend. I told her I was glad to help her lecture
I had coiling for the Fisher Level III rupture, had vasospasms for 21 days in NSICU. Then coiling again about six months later when I developed my stutter and was gifted with Foreign Accent Syndrome, she gave me a break of about 16 months I think, but I had a couple more angiograms thrown in during that time, then more coils with a balloon assist. I survived long enough for medical science to develop a stent that could be used as the ones available at the time were not able to do what was needed. There is another member who was part of the study for the same stent (Neuroform Atlas Stent).
Dr. Quintero-Wolfe allowed me to tell her Residents my theory on why the coilings weren’t working when they did rounds that late night back in Dec 2020 when I had the stent installed. My theory or hypothesis really I guess, is the daughter sacks were taking in the coils leaving the neck opened. She thinks it’s a sound guess.
The last MRI/A I had showed some residual bleeding. It may or may not have been there prior to the stent. My Neurologist NP beat her to the punch when he ordered it, so she pushed hers out. I cannot have them with contrast anymore. We will find out next year when she has the MRI/A repeated in June. She said no more angiograms for me unless I absolutely need one to save my life as I went into severe anaphylaxis back in June 2021 I think it was when she did the follow up for the stent placement.
I think I’ve covered the highlights Charles…learning how to walk again in NSICU, I forgot that one. Couldn’t remember what my feet were supposed to do.
Moltroub, I have been coming here for quite some time and you have helped me enormously, and the help and advise you have given to the other members has helped me also, Happy Anni-versary, I haven’t been through anywhere near the procedures you have, but it has still been quite a ride. I too have a partner, Chris, who has helped me very, very much, coming up on 33 years married, (the last six and a half after my rupture) and she has helped me all the way, I don’t think could have coped without her.
Thank you
33 years is awesome! I think marriage or a long relationship is a bit of work, but then when we have some serious health issue pop up, sorry for the pun, it is even a bit more work. For us, treating each other as best friends has helped, seems that way we are a bit stronger. The first thing I said when I woke up was to ask BH to get my good Japanese saw off the cement floor I dropped it on. BH asked if I remembered our promise and I said of course - we are dancing in the streets when we turn 80! On our first date some 30 years ago, we went to a Jazz Festival in Charlotte and saw two women in their 80’s dancing in the streets. It’s a long term goal and I have to learn to dance again, so practice is a must
Thank you for the kind words! The members here are great and we learn a lot from each other.
I love reading about the experiences, the different ways people are coping. I too, have a partner but he really didn’t understand what he could do for me. I reassured him I knew how much he was afraid, and I also knew that he really didn’t know what to do. I told him when I have bad days do dishes, vacuum, make dinner. We are living like best friends for now looking after a really sweet rescue dog
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