winter

It's great to see you in here again HAPPY SUBARACHNOIDANNIVERSITY (did I spell that right?!) You are an inspiration and I'm so happy to hear your health is much better and that of your mom too! You've got a great and positive outlook on life - keep it going and thank you for sharing with us! Hope to see you around more often. You've been missed! Hugs to you, Carolyn

Top of the morning to you David! I like what all the others have written and suggested. I too, have been plagued with depression (for many years prior to sah) which worsened after the brain explosion! I am on anti-depression meds and would NOT go without them. I've accepted the fact, that for whatever reason, my brain is not making the necessary chemicals needed for me to feel "normal". They have made me feel "kind of normal" - whatever normal is! They're not a happy pill, but have certainly helped me to cope with problems that arise. Also cognitive behavior therapy has helped immensely, although I did that many years ago. Teaches you new ways to think about things. I do the gratitude thing and meditation as well. It does help to see what good things are there for you / meditation - yes, your mind will wander and that's ok. As soon as you realize your mind is drifting, you just bring it back to quiet - if you fall asleep, that's ok too I still slip into the hole at times, and I tend to stay away from the Green Room for the same reasons you mentioned. I've learned though, that these are the times we need to put ourselves out there and share our feelings. There are so many loving people here and we all just want to help one another. You all have helped me SOOOOO much over the past 2 1/2 years. Do you remember the old SNL shows, can't think of which cast, but one of the characters had a skit like, Good Thoughts with Andy. He'd look in the mirror and say to himself, "I'm happy, I'm good enough, I'm smart, and gosh darn it, people like me". Don't laugh, but I do this!!! I also put little sticky notes on bathroom mirror to help start my day off with a good thought. Ok, you can laugh, but it does help me change my thinking and attitude. We've all been through one hell of a ride and we're still on it. Come into the Green Room often and vent, get your feelings out and know you're not alone in this!!! Sending you healing and happy thoughts , Carolyn

Haha David! I look forward to seeing Mary poke you in the eyes Good to have you on board. Will def keep in touch as to what's happening. They say the camera adds 10 lbs to the body, haha. We will just have my daughter do some tricks with the camera and we can all have the bodies we want:biggrin: Actually, I think we are all perfect in every way - I keep telling myself this and I think my brain and body are starting to believe it! The power of positive thinking, it does a body good

Hey Mikey! Great to hear things are looking up and you're feeling much better! YAY Happy New Year to you and your family Carolyn

This is great!!! Thank you for posting this, Karen. I don't know how I missed this before - well, I miss a lot of things and find them later Think this is a good one for family members and friends, too. Carolyn

Yay - Thank you Mary. Of course I need you I'm hoping we might be able to get a few others, close to your region, in on this too! I'm thinking David (where are you?) is around, right? Some of you may want to participate, but not be filmed - for those of you who are camera shy, we can do an audio or take written thoughts and work it in! Also - I didn't mean to exclude anyone in in Canada!!! I don't want to exclude anyone at all. Just trying to figure out the logistics, etc... I'm getting more and more excited as emails come in!!!!!! I know, I use that exclamation point too much Going to hit the green room and catch up on things. Hugs to all, Carolyn

Thank you Linda and Ern. I'm getting some emails from folks who are willing to be interviewed and/or help. Im really excited and can't wait to get this project going. Currently writing up interview questions about how it's affected our lives and relationships, what we're capable of or not, what "normal" is for us now, accepting changes, mental health issues... what we would want others (family, friends, medical professionals) to know about our reoveries and how they can help. Hoping to have funds/grants available by March or April so we can start traveling and meeting up with all you wonderful survivors!!! Love and thanks, Carolyn

My daughter and I are in the very early stages of getting ready to produce a documentary about survivors of SAHs and what to expect when they go home from hospital, where to get help, and to know they're not alone! The main goal is for every survivor to receive a DVD for themselves and family members, before they are released from the hospital. Right now, we have a friend who is doing research for grant money. BTG was my only help and salvation during the toughest times following my SAH, and still is. I didn't find this site until about 4 months of being home and wondering what was happening to me! You all were my life-line and I am so grateful. A special thank you to Karen Hyder for starting this site (you're an angel!) and all of you who help keep it going!!! In the mean time, I am asking for any of you and/or family members, who may be interested in participating (being on camera and telling your story, what you want others to know about after effects, to please email me your name and country where you reside. When, not if, (positive thinking here!) the grant money comes in, we would like to travel around UK and US to meet up with as many of you as possible, to be able to tell your stories. In order to get grant money we need to make up a proposal, which includes a budget, time-line, etc... I am so excited about this project and only wish to help as many as possible - including medical personnel who are also in need of education in this area!!! If you have any questions or are willing to participate in this project, PLEASE email me: cpwinter24@aol.com Really looking forward to hearing from you all and meeting you I'm hoping to have grant money and be ready for travel by April or May. Please keep your fingers and all crossable body parts crossed, lol. Love to all of you, Carolyn

Hi Jord! What you are feeling is very normal. You've had a very scary, life threatening experience and are now soon to go home and left on your own. I was in a state of panic when I came home from hospital. My daughter quit a semester of college and moved in with me for 6 weeks! I felt guilty and horrible that she did that, but at the same time was so grateful for all her help - and I didn't have a little one to look after. The panic does ease up over time. Do what you can to make yourself feel better, as others have suggested. I always took, and still do, my mobile with me - even to the bathroom. I guess the anxiety is still there, but knowing I've got the phone is a tremendous help. Anytime you feel anxiety or scared about what's happening, come to BTG. There is almost always somebody in here and will help you as much as they/we can. You're NOT really alone in all this. Take care hon. It will and does get better with time. Sending you big hugs from FL Carolyn

Hi Mikey, I don't know how I missed this thread before!!! Maybe cuz I'm not oon here as often as I used to be! Congratulations on taking your trip!!! That is a huge thing to face, but sounds like you are up to it and ready. Good for you. Just do what you can. I'm so happy to hear your few appointments have helped immensely. I have struggled with depression and anxiety for some time now. I see a psychiatrist for the medication - because my brain doesn't produce the proper hormones, chemicals it needs to feel happy or what I would really call"normal". I have seen psychologists and social workers in the past (when I had insurance) who have been a major help in my life. They taught me to "think" differently in order to deal with my feelings. There are still times when I am feeling quite low. I do have some very special friends who understand and get it - they help me through it and I just keep going - because I do really want to live a happy life Good luck to you, my friend! Can't wait to hear about your excursion!!! hugs to you, Carolyn

Good morning. Welcome to BTG - As the others have said, what you are experiencing is normal. You've been through a very traumatic and scary event!!! While your brain has been "fixed", it is still in recovery mode and takes a good while to heal. You've done so well with your little one and nursing. I know that there's a special bond there and your baby has benefited from your love and care!!! It's a process to get through as you aren't able to nurse any longer. Keeping you in my thoughts hon. I hope, for your sake, you will be able to stay at your Dad's place for a longer period of time. I know you want to get home, but the more help you have right now, the better. Take all the help you can, your brain and body need it right now. I know I was terrified after I came home from hospital! My daughter moved in with me to make sure I was ok and taken care of properly!!! It's been almost 3 years for me now. I've made HUGE improvements since the early days. Still deal with depression/anxiety but the medication helps and I DO function much better now. Come in here often - we're always here for one another to give support, comfort, a shoulder to cry on!! Looking forward to hearing from you again. Oh, don't know if you've read "A Letter From Your Brain" - it's in the inspirational area of this site and sooooooo good to read. I have to read it every now and again to remind myself to take it easy and cut myself some slack!!! Sending you hugs, Carolyn

Great thread! This question has been in my mind for a loooooooong time now. I want happiness and peace and all that good stuff that most of us want. After the last 2 1/2 years, I've become much more grateful for the things I do have - people that really care about me and have seen to it that I'm not out on the streets, I'm taken care of with much love from these folks - friends and family. Money would be most helpful! For all the reasons you've all said. I never cared so much about money before, I had a job which allowed me to have a home, a car, and the things I needed. I never lived an extravagant lifestyle, but was content with what I had. Now, those "things" are gone, and it hasn't been easy, but I'm still here. What I would really like is to be productive in society, independent enough not to have to rely on others, to be happy within myself, and be helpful in my community. Oh yeah, would definitely like to be healthier!!! I'm learning each day what I'm capable of and where my limits are! Haha, Gary - I would like a shiny new bike, too!

I get that "weird" feeling too. I'm not really dizzy, just kind of off balance where things don't feel right. I find this happens most when I'm tired or have had tooo much activity - like yesterday!!! I must have looked like a drunk as I was walking down the pier, gong to the left and right. At one point my daughter made me get in front of her as she didn't like the fact that when she turned around, I was off to the side somewhere! I also get sharp shooting pains in my head at different times throughout the day. I've gotten used to them - don't like them though. Strobe lights, crowds, any video games, fast moving films (with 3D effects) are tricky for me. Have to hold on to something. Just too much stimulation at once, still, for my brain to take in I guess. My niece turned on the radio yesterday (in the car) after our long day of walking in San Diego. "Girls Just Want to Have Fun" - it was blasting. I looked at her, opened my mouth to speak, and she said, "I'm sorry, I forgot" and promptly turned it way down!!! Thank God she did, my head might have exploded in her car and that would have been quite a mess to clean up!!!

Hi Julie Ann. Wow, 3 years IS a long time to have dealt with all of this by yourself! I am so happy for you that you stumbled across BTG. You'll find so much information, support and wonderful people who are willing to help in whatever ways we can. It can be so frustrating - this recovery process. Many of us have struggled with the acceptance of where we are, in life, right now. I too, thought I would be back to "normal" at this point (2 1/2 years later). I also thought that at the one year mark, lol. I can honestly say, in looking back, that my symptoms are much better now than they were in the earlier days! I do still get fatigued, have migraines - not as many now, very emotional. When I'm tired I muddle my words and walk a little wobbley. If I've had too much activity, I get tired andon it goes. As one of the others said, keep talking to your dr. They need to be educated in this area. While you may have nothing wrong with you that the dr.s can "see", you've suffered a most extreme and traumatic event to your brain! Our brains don't work exactly like they did before. While each of our cases may be different in some ways, they are so similar in after effects and recovery. Hang in there sweetie and keep coming back to this site. We're here to help support one another as we go through all these changes in our lives. Hugs across the pond, Carolyn

Happy 10th Anni-versary, Jess! It's great that you can see the positive sides of things and you just keep going. You do have 2 wonderful boys and so much life ahead of you. Thank you for all your help and funnies you've shared on BTG!!! Wishing you much happiness in the years to come Big hugs across the pond, Carolyn

It would be wonderful if the medical community, neurologists in particular - since that is supposed to be their field of expertise, would take a greater interest in the after effects of SAH. You would think it would be a rare learning opportunity! The first neurologist I saw (while I had good health insurance) seemed nice and caring, at first. Then as I continued to see him for various problems, he was short and I felt my feelings and symptoms were being trivialized. Yes, I too, had been cured. I was alive and should be thankful, forget the rest. I sat in his office and cried one day, told him I felt like nobody cared or could help me, used a few swear words which seemed to surprise him! HE asksed me about depression, sexual abuse, drug addiction, etc... Yes, I've struggled with depression for a good portion of my adult life - but it was well under control prior to SAH. He then suggested I see a psychiatrist and psychologist. Good advice and couold always help, however; didnt help with the fatigue, hitting that wall, being able to multi-task, any of those other things we all seem to deal with on a daily basis. Didn't mean to go on and on about my own junk. I guess I needed to get it out, let you know I (probably all of us) understand the irritation, and lack of support we've gotten from the medical community when it is needed most! When I went back to work (6 or 7 weeks post SAH), it was really hard. I pushed myself beyond the reasonable and thought I could handle it. I knew I was tired because I was working, but it didn't get better for me. The more hours I put in, the worse I felt. The headaches became unbearable at times, the fatigue was out of control. I kept telling myself "it will get better eventually". I was proud of myself for having gone back to work, for putting in those extra hours (regardless of how I felt), I could do it. I was raised to keep going, never say "I can't", blah, blah, blah. I tried to have fun on the weekends and in my garden. While I did enjoy those times, my body and brain suffered for it. When I was laid off from my work (my position was eliminated because I could no longer do 2 jobs at once - massage therapist/supervisor and receptionist!) Anyway still have anger issues over that, but it was a blessing in disguise, sort of. It did force me to slow down and allow myself to rest more. Financially, it was/still is a nightmare. I'm fortunate to have some very close friends and good family who've helped to care for me financially. I no longer have my car, a home, a job. I've lost any sense of independence. I've worked at getting my self respect back, dabbled in my cookie business, and am still (after a year) waiting for a court date for a hearing for social security disability. I've gone off the deep end here! Back on track - I think the main concern all of us have is the medical community, as welll as the general population, need more education in many areas. We must be our own advocates for our health - we have to be now. Sometimes it's very tiring and you don't have enough energy or will to keep up the fight. Spending your "off" days having to make appointments and deal with health issues s*#*s. Having to deal with inept and uncaring idiots in the medical field or anywhere, is disheartening and hurts. When I was a little girl and first saw The Wizard of Oz, I was in awe of Glinda, the Good Witch. I wanted to be Glinda. I still want to be Glinda and wave my magic wand, say all the right things, and fix myself and the world, lol. So today, I'm Glinda and waving the wand. Gonna click my heels 3 x and see if that works, too. Love to all - have a strong day and keep up the good fight! Carolyn

As I said, being 2 1/2 years post, I still get angry. Sometimes I let things roll off my back. Other times, it hurts and I feel very angry and yes, want to shake people. I think it all takes time, it's a process. One step forward, then 2 back. Every day I am reminded that I am not exactly the person I was before. Yesterday was a good day. Today, so far has been a good one - it's still early, haha. I do try to stay positive, say affirmations to make myself feel better, learning to lovoe myself for who I am now. It's hard.... but I know I have to keep moving forward, the alternative is not what I want. Maybe someday I'll be able to let all the comments slide without feeling hurt, or anger. For now, I'm just trying to get through each day as it comes and work toward the best. We've gone through a lot, we have!!! I've often thought about making up a pamphlet that explains things for others, carrying it around and passing it out when people make rude and ignorant remarks. That way I wouldn't get emotionally involved in thinking about what was said. Just hand them the pamphlet!!! Here ya go. Bye bye I better get off this pc now and try to find something productive to do! Hav a strong day!

Hi Jill! Congratulations on getting 2 posts on here!!! Computers can be challenging and learning new things like navigating a web site are tricky at times! You've done well. So glad you've found BTG. This site has been my lifeline for a good while now. The people here understand and know what you're going through. So much great information and support, and friendship from people all around the world! Look forward to hearing more from you as you find your way around BTG Hugs across the pond, Carolyn

Hi Jus! Don't think we've met yet. I've been off and on BTG less regularly lately. So.... glad you found this site!!! How insenstivie and awful of the colleague to say that. I would have been enraged! I'm 2 1/2 years post SAH and I still get angry when people say stupid things to me. You'd think I'd be over it by now, but it still hurts that people can be so thoughtless. As the others said, they obviously aren't thinking abut what they are really saying, not an excuse - just lack of consideration or forethought. If the shoe were on the other foot, they would totally get it! I'm learning now to speak up when others say things like that. I can't seem to tolerate it and feel they need a little education from me I'm tired of explaining to others why it's different for me, so for those who continue to make stupid comments after I've already explained why I'm like this now - they are out of my life (like MaryB's done). It's enough of an effort to deal with our lives and move forward without dealing with that! Hang in there. Your feelings are valid! Sending hugs your way, Carolyn

Congratulations Kris on your 1 yr. mark!!! Well done. I know it's been a tough struggle, but you've made it. Keeping you in my thoughts today for "all good" and joy to fill your soul Big hugs, Carolyn

Good morning all. I've found I'm unable to tolerate the heat like I used to prior SAH. I live in Florida where it's hot most of the year. My only reprieve is the winter time when it's cooler and little humidity! I found fairly quickly that it was difficult gardening or doing anything outside unless I took breaks after about 15 minutes, drank water and rested a bit. Sometimes I was still determined to get back at it, regardless! On those days, I paid, lol. Many folks suggested wearing a hat when I was going to be out in the sun - it does help. Since I've been visiting in California, I've noticed I can stay in the sun a bit longer without feeling so poorly. No humidity here (huge difference). I've made some big boo-boos; like taking my morning walk after the sun is up and trying to make it up the hills here :crazy::crazy. Some day I will learn all my limits, lol. In the mean time I try to remember to stay properly hydrated, wear a hat, and remember what I AM capable of. Here's to staying cool

Wow, I'm surprised she was allowed to go home so soon. Sounds like things went perfectly - good for her!!! And you too. I've got platinum coils too, and like Penny, wonder what we'd all be worth now? Congrats and thanks for sharing your good news!!!

I'm 2 1/2 yrs. post SAH. I also lose words, or can't find them. It happens less now, but still occurs several times throughout a day! Usually is worse when I am tired (which is mid-afternoon:roll:) and into the evening or have had too much activity! It was alarming at first, now it's just part of the day and like the rest of you, usually have a good laugh at it - except when at the pharmacy and picking up prescriptions and can't remember my address and I just stare at the clerk for what seems like hours!!!

I was massaging a patient. I was also extremely livid, at the moment, with another patient who had made inappropriate comments to one of my therapists. As supervisor, I knew I was going to have to deal with the male patient and I was just fuming!!!. I tried to calm myself down, re-focus on the job at hand, and then BOOM! Felt like someone had hit the back of my head with a bat!

Karen - Thank you for posting the link! I had been looking, the day the show aired, on YouTube and couldn't find it. So will watch it sometime today.