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Swishy

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Everything posted by Swishy

  1. Hi Ben, So glad you found us. You will be the one who knows if you are ready to go back to work. Having a bleed is so different for each of us, we all have a different time line. I went back to work before my Dr. thought I should, turns out he was right but after a couple of iffy months I was okay and still working. I am quite a bit older than you 66, 64 when I had my bleed. Even though you feel lucky for not having any major impairments when there are things not working the same as they did before in our bodies it is worrisome. You are early in your recovery, our brains are an amazing organ and will keep healing. I wish you well as you continue to recover and get back to your bike Jean
  2. Hi Irene, I found it very comforting to read others stories, I still do. Now that I have my wobbly little sea legs under me I am so happy to reach out to others as they come on board. xx Jean
  3. Hi Irene, Welcome, glad you found this site. So sorry you had that happen to you, happy to hear you are getting good care. There are so many of us here with different stories, we are all survivors I had my SAH 2 years ago...it was a sudden thunderclap headache, no other symptoms...I was so fortunate as it stopped bleeding all on its own and after 2 days in the hospital I was released, counting my blessings thinking I had dodged a bullet (which I really did)...shortly after getting home I had vasospasm which was more complex and required a week in ICU and 2 weeks of rehab... So here I am 2 years out with some invisible issues going on, numbness, off balance but I survived and I am living my life...went back to work even. Good enough to welcome you and let you know we understand. Please go through this site and read the stories of others, perhaps more like your experience..I have found the folks on this site to be so supportive and full of desire to share and support.. So I will say again Welcome to BTG. Enjoy your day, Jean
  4. Hoping the US catches up to you...Flying in a couple of months and it does cause me distress to be with all the people rushing around pulling bags...lots of overhead announcements...I am slower walking and if anyone bumped me I think I would topple (not sure if I would but feel like I would)...
  5. No cause was found for me also...They even gave me a piece of paper saying it... my thought...something caused it..but as Crazy says "all we can do is fight on" we are survivors... Jean
  6. Huge congrats on 14 years, you are beautiful ..You sure do give me comfort...thank you for sharing. Jean
  7. The brain sure does move in mysterious ways...Great we are hear able to talk about it .... still leaves us with why?? I am thinking I will never know... Jean
  8. Hi Subs, Thanks for reminding me to look back over that link... I think I am getting a bit wacky thinking too much about it haha...truth... Jean
  9. Well I am thinking that perhaps the number of people that have had vasospasm on this site are few. I was hoping to read others experiences that were more like my own... I don't think I will ever stop trying to learn more about what exactly happened...I wish I could just let it go...not think about it. Jean
  10. Hi Casey, Good to hear from you. Sorry for what happened to you, must have been terrifying... When all was said and done and I returned to Mass General for my first follow up with Neuro I was so blindsided. I mentioned to the doctor that I was especially fearful as I had now had 2 strokes...and he said not really (me???) he told me then about the vasospasm and that it was really all part of the same stroke...I had to go home and go on the computer and look it up...took me weeks to be able to do it. If they were expecting vasospams for me no one mentioned it when they sent me home from the SAH. My initial follow up appointment was set for a month...but as I said I was back in the ER way before that.. Such a complex event(s).... Stay well.. Jean
  11. Hi all, Many of you know but I will give a brief history...SAH May 2017, small stopped bleeding on its own, left me with no problems...3 night in hospital a ton of tests....sent on my way with only meds looking at trying to minimize head pain.. RCVS 3 days after getting home, they said it was severe, I had an angiogrm that went into my groin up into the areas in my brain that were in spasm and bleeding and put verapamil into the vessels...total surprise to me, no one had mentioned this as a possibility...8 nights ICU, don't remember about 4 days, 2 weeks in rehab...left me with core weakness, couldn't sit up, balance issues and sensory issues. I also have problems with being overwhelmed, such as with a lot of people moving around, or walking past me and terrible fatigue... So I would like to know if others here whose story may be like me have had a SAH and RCVS ...did you know you were at risk? I was just so blown away with it. How did you recover from one or both?....I am in the US, so I am wondering if treatments differ..I was at a very prestigious hospital in Boston that has a first class neuro department.. May seem odd for me to be wondering about this after 2 years but I still am...I guess I am still trying to understand it all.. Thanks Jean
  12. Hi Diane, I know exactly what you are talking about, friends and family thinking I am the same as before the bleed. I share this with you. My husband does get it but I think he is the only one and it has taken him time. Perhaps part of this happening is that they really want us to be the same. I am trying to understand their perspective, I am hoping all of us get it at some point. Invisible disabilities....It is difficult...I feel like I am walking on a boat all the time, I cringe when people walk too close to me or too quickly past me, many changes. We are still the same people, just struggling trying to find a new normal. Time does help. Sleep and knowing when to rest is so important and we have to be the guide for our loved ones. We have to say it, I need a break or let me sit for a while, not always easy. I am trying to work as long as I can, like you building retirement, hoping not to run out of money, everything is so expensive. You like me live in an expensive area.I did cut some hours and don't go in extra any more. I work at a hospital and I am sure they don't like it but I will have my doctor back me if I need to. I am fortunate to have all of my children launched, I am older than you 66 now, ugh don't know how that happened haha... One day at a time Diane, we have to be gentle with ourselves, no option. Brains heal slowly, I send you my very best wishes to you and your family as you navigate your path. xxJean
  13. Hi Diane, So glad you found this forum. I have said this before but I just felt like I fell into their arms. So much support from people who understand what i am talking about. I had my event 2 years ago, first my SAH then Vasospasm, two different hospital stays 8 days in ICU with an additional 3 days then 2 weeks of rehab as my core strength was gone. I like you feel lucky to be alive...we are survivors but we still need to understand and digest what has happened to us. There is much written on this site from survivors that are way more eloquent than I (haha) but I did want to welcome you to BTG. I am from the USA also, couldn't find a support group that related to me as this one does. Jean
  14. Hi Mandie, Welcome to BTG. I am so sorry you are having a tough day. I don't know how to explain it to anyone....but I do think the people who love us try and I think their frustration perhaps is as difficult as our own. I am happy you found this site, plenty of us here that understand. I have found this site to be a comforting place to come for understanding and encouragement. I hear in your writing you are searching for the thing that will make life seem worthwhile again. The sky is the limit...You have great strength and ambition. I have found in the midst of feeling strong and ambitious I have times of feeling the loss of my old self. I don't know if it goes away but I know I am lucky and want to keep moving on enjoying this life. I hope tomorrow is a better brighter day for you Mandie. you are so right your sky your limit... Jean
  15. Thank you all and Sarah you are not alone in how you feel... I work hard to keep up beat , I do...but it catches me now and then and drags me down like a rock...Today I went to try and buy myself a couple of summer shirts...it was awful...dressing and undressing, no seat in the dressing room and after 4 articles of clothing I was feeling "very swishy" sweaty and defeated... I will persist....only life I have and I am going to do my best to march on... Jean
  16. Hi Mike, Thanks so much for reaching out to me I can look at my medical records on line and I did spend a great deal of time trying to research it the first 6 to 12 months after my events...I don't think my head was clear enough at that point to take it all in...The records include every MRI, every blood test, everything from my 1st hospital admit, through my days in intensive care and then on to my 2 weeks in rehab...I do have it on my mind to try to go through it again, perhaps making notes (perhaps a timeline) it seems a bit overwhelming for me when I think about it...I must get to it.. Ah the exercise thing...all good advice for sure...I did swim (well exercised in water)...did it for my neck as I have 3 herniated discs in my neck...I don't know that it did anything for my neck but it was good for the rest of me haha...trouble being I am not close to where I could afford the pool access ..also working the 3 shifts a week that I do takes most out of me... I am on my feet throughout my shift and often walking up and down hallways in and out of patients rooms... hmmm maybe some excuses here haha...I continue to do the exercises PT showed me and I think there is perhaps a bit of improvement...I don't feel like I might fall over when picking up something off the floor... I think perhaps I am in a bit of a rut at this point...I do what is expected and will accept invites for lunch etc, even went to Mexico...but truth I am pushing myself, I would like to say no....sort of feel I have lost some of my zest for life...makes me sad as I was the one always thinking of taking a trip planning a get together...I wonder if my friends notice? My husband knows, I think my kids do as well...not sure...anyway...thank you again Mike, we all have our mountains to climb...some days bigger than others... Jean
  17. Hello, so glad you found us, My goodness you and your hubby sure had a difficult time, so sorry to read of all that happened. Sounds as if you had a great team getting him to where he needed to be. Happy he is finally home and has all his cognition, memory and and speech in tact. As you said it is early days for him but he sure sounds like he is doing well for all he went through. How are you holding up through all this, it is so traumatic for family. I was the one who had the SAH, but I know my husband was floored and probably in shock for a while. It took his feet out from under him. Thank goodness I have done well, am now 2 years out. It is an event that takes time to recover from and I still feel it is very close not two years ago. I want to let you know there are so many wonderful people here for support, I feel like I fell into their arms 2 years ago. I have much support and understanding here...My best to you and your husband as he continues his recovery. jean
  18. Hi there glad you found BTG. as Subzero said you are among friends. Friends that in one way or another share some of what you are going through. I love that you sound as if you have kept a good sense of humor. Humor can get us through a tough day (sometimes)... I had my SAH followed with Vasospasm just 2 years ago. I feel as if I am better now that last year so I am going to keep working on getting better still. Each inch of improvement may come slowly, so slowly for me that I can only see it when I look back. BUT it keeps coming. We are all survivors here, and we help each other. So Welcome, please keep sharing here, I think you will see what others share is often heart warming and inspirational... Jean
  19. Hi Chelle, Congrats on being 5 years out...You sound like you are doing very well and well also in realizing when something is getting to the point of seeking help. It is not always an easy thing to recognize in ourselves. I speak from experience. I agree with you 100% that this site is God send. Having this place with people that just know what I am talking about, "without being judged" as you said... I wish you all the best in the future...I try to remind myself this is all a journey not a race haha sometimes I believe it and sometimes not. I try. xoxo Jean
  20. Hi Rosie, I am lucky that headaches have not been a huge thing for me. I do get one on occasion but I quickly know it was not the thunderclap headache that started the whole thing. I do worry in general about it but work at trying to not let my worry rule me. I worry when I go away from my medical sources, especially if I leave the country. I wish, oh do I wish I could leave it (the worry) someplace...abandon it. but my body reminds me with the gifts it has left me. Day by day, I say, it is less than it was and I keep on working to make this my best life. You are for sure not alone in your fear...we have you❤️ Jean
  21. Hi Ruth, Welcome to BTG. I am glad you are doing well. I am sorry it took you so long to find us, there are so many wonderful supportive people here. I had my SAH followed by vasospasm 2 years ago. Like you I had a thunderclap headache,my initial bleed was small and I felt like I had dodged a bullet...but my vasospasm was severe and I spend 8 days in ICU and had to go to rehab. I am doing pretty well these days also, some ups and downs but we are so very fortunate. I enjoyed reading your first blog post very much. I find the support here has in many ways been my saving grace...I felt and still feel the need to be understood and coming here helps me with that. Glad you joined us, looking forward to reading more of your blog. Jean
  22. Hi Melissa, I had my SAH just 2 years ago now. I also had a severe vasospasm just a few days later. No stent, no surgery but did have a angio that put verapamil into the vessels in my head to help stop the vasospasm. I also have energy problems, making frequent stop and sit periods while trying to accomplish a task. If I don't allow myself time to rest I end up in a bit of a state feeling mixed up and anxious. I try to recognize when I need it but sometimes life just moves too fast. Looking at the bright things in life is so positive, your daughter graduating and a grandchild...congrats The lingering effects of SAH is so difficult, but we are so fortunate. Melissa I struggled with not remembering what happened to me, I still do. I kept thinking I would remember but now after 2 years I know that is not going to happen. I keep thinking I should be glad not to remember, perhaps it is a gift that I don't. Best wishes Melissa, Jean
  23. Hi Everyone, I guess I really can't believe that 2 years have gone by since my event. I had a thunderclap headache which was diagnosed as a SAH, a small one, that stopped bleeding on its own. I spend 3 days in the hospital with a lot of testing. They were hesitant when they discharged me as a student doctor had spotted something on my MRI but after several hours and multiple doctors checking it out they discharged me. I felt as if I had dodged a bullet...but the worst was coming...Two days after discharge I was taking a shower and again I felt that massive thunderclap pain in my head and my hands and feet lost feeling...I was able to get out of the shower, dressing quickly and called emergency help as I was alone.. I don't remember anything after this...I awoke only briefly in ICU where I spent the next week. I was fortunate as they didn't have to open my head, they were able to do a type of angiogram that injected medication into the vessels in my head, verapamil..the days after that were in and out on day 5 I felt like I was able to stay awake more. They sat me up and I realized my core strength was gone. I couldn't hold myself up, I could stand however. I went to rehab for 2 weeks and it got me walking, pretty well and the core still weakened but better. I struggled organizing my thinking, feeling mixed up. These feelings have pretty much gone. So here I am, 2 years out and very thankful for the extra time I have been given. My core is still an issue, seems to be a factor in a back issue I now have. My thinking is pretty good, a lot of new or multiple pieces of information gives me that mixed up feeling but I can deal with. My balance is not the best but I do get around pretty well. I feel like I fell into the arms of this group and I am thankful for all the warm, helpful posts I have gotten from you all. I desperately wanted a support group and found nothing near me. This group has been vital to me and even as I move on I find myself looking for your support when things arise. The old saying "there is strength in numbers" rings true my friends. xx Jean
  24. Hi Kerry, Welcome...I began my hemorrhage with a thunderclap headache. I was taken to the emergency room and a treated for migraine symptoms...they did do a cat scan which showed bleeding and I was transferred to a major hospital. I am happy for you that you will get the MRI and the doctor not being worried is great but it certainly doesn't change the fact that you are. I hope everything goes well for you, please let us know how you are. I wish you the very best. Jean
  25. Thank you all for just the supportive words I needed...even in the middle of the night Feeling better as I take this in realizing I do want to understand what happened. In reading that I am not alone in not getting the full correct news I have to remind myself that this is a complex thing we share here and we are all lucky to be here and also have had some great medical teams to thank for it. I am off to a vacation in Mexico early next month so I will...I must...get back to my happy packing and listening to some fun Spanish music which always makes me happy... xx Jean
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