Carolynusa

Hi Mandy! You've had a rough time for a while. It seems like things are becoming a little less difficult and that's great! Please don't over-think some of the things you are worried about - or scared of. As to crying - fuhget about it! (from some movie?) I cry at commercials on tv, stories I tell of the past, etc. etc. I don't feel bad about it at all. The last week or two I have noticed that I am now becoming angry more often. You should hear me when I am trying to work my remote controls or type a sentence that keeps coming out stupid. I think you are wonderful and have a huge heart. While you are trying to cope with your new life you are out there trying to encourage others. You're special. Here's a principle I learned years ago that has helped with some negative or impossible-seeming things in my life - The "act as if" principle. If there is something that is giving you trouble or you are scared of something = "act as if" it's fine and you are strong enough to get through it. ex. When I have gone to apply for a job and am nervous about it - I just march in there and "act as if" I already have the job! lol. You wouldn't believe how often that principle has helped me. I teach it to my kids also and they like it. I didn't mean to preach but it sounds like you get really down on yourself and I want you to recognize that you are great and can have a great future. Just "act as if"! lol Much love to you. I think of often and have always appreciated the kind things you say to me on the site. Carolyn

Blimey - (that was for you Macca) thank all of the powers that be that Win survived her trauma so that she could offer so much to everybody she comes in contact with! I was like you, Win, when I came home from hospital still a little loopy, and found this site and began to laugh at your posts. I could forget, for a moment, what had happened to me because of my special relationship with you. Even when I don't write I am constantly thinking of you and laughing at your songs, planning my next corny one. Thanks again to Tina and Daffs for letting Win know she had a stalker! Macca - I hope you realize that you will be spending a lot of money on chocolates from this point on. We may have to set up a special fund just for chocolates. Be well everyday all Carolyn

Hi Emssy-Happy to meet you only wish under other circumstances. I agree with all the above - especially the part about Win being a pain in the neck (kidding Win!) My doc told me that I would probably have off and on severe headaches for 1 - 2 years (my sah June 3, 2014) but might last longer off and on for years. The main thing I notice at this stage is that, if I overdo it, I get a headache almost immediately and become exhausted. From what I've heard and read this seems like a fairly common condition. I would, for sure, take it easy during this flareup or whatever it is. Also I pressure the docs when I have symptoms that make me nervous or scare me. If this keeps on it might be good to keep checking. You're your own best advocate. Also it would be great to keep coming here and getting support through this. Please take care and I hope you feel much better soon. Carolyn usa .

Hi Carly! Hope you're feeling better today. It's one step at a time and a lot of positive thinking. I had a rupture in June last year with coiling and clipping etc etc etc. two days ago I had another surgery where my wonderful doctor inserted a "pipeline" up into by head near the site with the coils and clips. It is to move my blood flow around the area with the clips and coils so that there is less blood flow bombarding the area. All went well and I am home to annoy my husband. Like you I sat and read a lot of the posts on this site and learned that so many people had the same thing happen and that I am not "different" than so many other people. Besides, isn't it great to learn that all of these wonderful people are survivors and want to spend time to make other people feel better and safer about their problems? You are not alone Carly. We already love you just by the fact that you found the site and are sharing your feelings here. Remember..one step at a time and don't overdo it. Take care and Win isn't kidding when she says that singing is one of the greatest ways to keep positive. Love, Carolyn usa - honorary Brit according to Macca. Hope to read more from you soon. Try to stay positive.

Hello all my friends on btg. Thanks for your good wishes. Most important thing - other than that obnoxious - lol surgery is that Macca made me an honorary brit! Wow! I think the surgery itself was great. My doctor said it went well and I trust him completely. My veins gave them trouble as they are very hard to find. I saw a note from anesthesiologist stating that they had to start an iv multiple times. Anyhoo..After coming out of recovery and anesthesia I found out I had to go back to 7th floor where I started after bleed in June. I cried all the way up. Who wants to go back to the place where you almost died? Not I. They threw me into a bed and made me lie completely still for 10 hours! Soon my back hurt and then my shunt hurt from the pressure of the pillow. So they kept adding more pain meds. All in all it was semi-ok and I used all of my wiles to make me able to come home. So, by 11:am I was home! Yeah! Far out! Groovy! (for my Win). For Keith - Inagodadavida! For Keith - I did get a chance to eat my only favorite thing at the hospital - roast beef with gravy. It was good. Oh! One more thing! The nurse was going to change the dressing on one of my IV's and blood shot out all over the room. She forgot about the plavix and aspirin...oops! It was all good though. So...maybe the pipe will help and, once again, I thank you all for good wishes. It means a lot to me. Will talk to you soon. Keith said I shouldn't overdo it so I think a nice lay on the couch might be swell (Win - from the fifties) Carolyn

Debbie and Janey - Thanks so much for your well wishes! I really appreciate them and will do the best I can to be positive and not cause too much of a ruckus in the hospital..lol Have a good one Carolyn

Moved to The Green Room http://web.behindthegray.net/index.php?/topic/3716-it-bugs-me-carolynusa/

Janey! Congrats! You sound so much better. Keep it going. Stay positive and heal more each day. Good thoughts coming your way. You are amazing. Debbie - I am SO glad to hear that you are feeling so much better and the procedure went fine. It's me that is having the same thing done on Tuesday. I have been on plavix for 2 weeks (bruises everywhere) and aspirin also. I was told I would be on aspirin for life and plavix for 6 months. This is just my diagnosis. Yours may be different. I've been nervous but the fact that you are posting so quickly after the procedure really gives me encouragement. Take it easy and continue your feelings of love and gratitude as those kinds of things are great for your feelings and healing. So glad you have them. Now rest up, feel better each day and keep us posted please.

Hello Orchid! I'm a little slow at getting to posts but I want you to know that I have read all of them since your very first one. First of all I want to say that it is a great idea to make a list every time you got to doctor. Keep paper by you and list absolutely anything that comes to mind. I was in coma for 4 weeks so, thankfully, don't remember the catheter or how much I had to pee for the entire 6-1/2 weeks. In fact I don't remember anything! After I went to Rehab floor I saw Psychiatrist and was diagnosed with PTSD which I already had from childhood events. I never had a panic attack however. I've known people who have had them and know that they are not a nice thing. The dizzy, appetite problems, and weird head feelings seem to be normal and are mentioned in a lot of posts on this site. You might want to do search and read some of those posts. I found them very helpful. By the way I may have to put pen to paper as I suddenly can't type worth a d---. I used to have my own typing business and had great speed but probably need paper. lol. Take care. You are the most important person in your life right now. Look for help when you feel you need it. I will very sincerely be praying for your recovery and a happy rest of your life. Carolyn

Debbie - Hello! Gold Rush country I see....lol. Lived in CA for years and have been through Oregon plenty of times. You brought back good memories for me. Don't mean to brush off your experience but had to get that over with so we can talk about your problems. First of all I am so sorry this has happened to you! I sit and cry when I see a new person reaching out for support after SAH or other types of these injuries. Winb would tell me to knock off the crying and sing a few songs. She's right. I sing all the time and it helps me get over anxiety, etc. Although I do give myself a headache as my singing is pretty bad...lol. Thank goodness they found this early and before a rupture! That alone seems like a miracle to me. Mine ruptured in June last year and they found 3 more in approximately same area. I had a 20% chance of surviving, was in a coma for 4 weeks and rehab 2-1/2 weeks but HERE I AM talking to a new friend on BTG. So glad you found this site. I've noticed more USA posts recently which means BTG is a great success as a support group. Leg pain - I have had 15-18 (lost count) angiograms. 12-14 while in coma and 3 since released from hospital. Only once did I feel pain afterwards although I always expected the worst..lol. Sounds like you have a good neurologist/neurosurgeon so try not to fret over that. It's better to do that test than to miss something in your head that needs more care. I had a feeding tube in my stomach and I notice, all this time later, that when my cats step on that area, it really hurts! But...they are our pets so I forgive them. lol. Surgery - last angiogram I had we discovered a new ani that is popping up on top of the others. Bummed me out but my surgeon has scheduled me for surgery just a few days after yours. I have already been coiled, clipped etc etc but he has a new technique that sounds a lot like yours. On the 21st I will have a stent (mine is called "pipeline" run up from leg to arteries in head that should re-route my blood flow around my bad area and keep the blood flow from hitting that spot. He is very positive of outcome. I trust him completely and hope you feel the same about your surgeon. Think very positive. Sounds like faith is a good thing for you. I won't preach to you as it feels like not the right place for that but pray, pray, pray. You sound great to me and I believe you are going to be okay. Remember that this type of injury requires rest and lots of water. Very important. I am 61 by the way and, while in rehab, met quite a few people older than me. Some are younger. It just happens. Finally - I'm sorry for the rant but felt a bond with you the minute I read your post. Please keep posting and reading other posts. It is a great comfort in many ways. All of the above posts are very meaningful and comfort makers. I, also, will be praying for you. Once again, think positive. that's the best advice I can give. It's hard sometimes but you will be amazed how helpful it is. Much love, Carolyn USA.

Hello Cat. Very glad you found this site. I know from personal experience how much help it can be. What happened to your mom is a little out of my knowledge arena. My SAH was different that what you describe. I am SO sorry about your mom but very encouraged that she knows you and tries to communicate. That's fantastic! Don't feel alone. Come here as often as possible and you will get the support and encouragement you so need right now. Ask questions of your mom's doctor whenever you have concerns. I found the nurses very helpful also and I saw more of them than the doctor. It seems like you did all the right things in the beginning to help your mom get the help she needed. That was great. You were very smart to have handled the trauma the way that you did. It's obvious how much you love her and miss her. I agree with all posts above and would only add that you try to remember as each day goes by that recovery is inch by inch. It adds up. Again - when you are feeling alone please visit this site. There are always people here to comfort you. Much love Carolynusa

Hello Heather and Wonderful Daughter! So glad you found this site. The people on BTG have a lot of experience and knowledge either as survivors or carers. My SAH was in June 2014 and I was so scared when I got home. I found this site and began reading posts that helped me understand that what was happening to me was common to injury. You and your daughter will meet some great people here that will help both of you feel better about recovery and help to make you both realize you are not alone which is a common feeling for a survivor I think. So sorry your daughter had to experience this at such a young age - or any age for that matter. She sounds like a wonderful young girl. She is in need of a break for a little while and will be much the better for it. I agree with what was said above. Rest and water, etc. In regards to getting closer, I had the same thing happen with my sons. One of them was by my bedside every day of my 6-1/2 week hospital stay. He would bring me chocolates (Win's favorite) and a deck of cards. He even learned how to play gin with me - never would before. He still watches me every day and thinks I don't notice, but I do. So glad you both are able to experience that closeness. keep an eye on her so she doesn't try to overdo it. That time will come. She's young and strong I think. Please keep checking back in with updates. I will be thinking of you both every day. Be well - both of you. Carolynusa

Hi Poni! Prior to SAH and - like Win- I used magnifying glasses to read, knit, etc. As I age my sight gets worse and worse. I did notice, since sah, my sight is worse - especially in right eye. It's still slightly "droopy" since sah. I have never had complications like you describe but would certainly feel good pursuing it with as many doctors as necessary. Take care and keep us posted. Carolyn

Thinking about you today Roy. Hope you are feeling comfort and ease of pain today and more of the same in days to come. Take care. Don't overdo it. Honor you brain and body so they will honor you back. Drink water, take it easy, sleep when you feel you need to and make sure those physicians follow-up with you. You are your own best advocate. Hope to see more good news from you soon. Love, Carolynusa

Clare- my husband did look up your medication in relation to your illness and it seems not crazy at all. I'm not encouraging you to not go to doc though. You should always go to doc if you have concern - but wanted you to feel a little better about prescription. We always look up our prescription when we get a new one. Then ask doctor. Good luck feeling better and keep nagging those physicians until you feel more comfortable. That's why they're there. To help you. Much love - Happy Holidays - and take care. Carolyn

Misskdk - Glad to meet you although wish it was another way. Sometimes I think we were all meant to meet one way or another and this site has provided that opportunity. We can hold each other up and try to help all of those who find the site and are possibly scared and feeling alone. I know I was. Most of all take care of yourself. I think you are going to be great! Seriously. You'll love your new self and others will love you back. I already love you and we have not met. lol. My only advice is read the posts. You will be amazed at how many things you have in common with people here. It saved me post sah and changed my "new" life. Again...I think you are and will be great. Take care of yourself and keep us posted. Win is so right. Singing is the best. Love, Carolyn (Illinois)

Hi Clare and the rest of you - Add me to the list of people who think you need to see doc. Please. I'm not embarrassed to keep asking question after question after question. We need a professional and reassurance, help with meds, etc. and will for a long time. JC - So sorry for your scare. Good deal that you went to hospital. Your wife is great. Keep her to remind you that you are not superman. Take the best of care. Love to you all. Carolyn

Good morning Janey and all the rest. I had clips, coils, shunt, etc. etc. etc. I was not prescribed any type of steroid that I know of. It's great that you all are checking with your physicians before making decisions about your meds. I will contact the hospital itself if somebody wants to add more medications or take some away. Too many times I've had a prescription written and, when I check online I find that it should not be taken with my other meds. I hope you all feel much better day by day - get some relief. It does take a while so patience is the key. I'm sorry about your bottom Clare - lol. As if all the head stuff isn't enough. Have a great holiday weekend and take it step by step. Hugs and positive thoughts your way. Love, Carolyn usa

Win....I love that song! So good to see your post today John. Love the campus area at Purdue. They have a good mall in West Lafayette that I used to drive to at Christmas - and plenty of restaurants which are one of my favorite things ever. My first 7 years were spent in Niles, Michigan. Then in 1960 we sold most of our stuff, packed up our station wagon, hit route 66 and ended up in San Diego right on Mission Bay. Within weeks of our moving out the apartments were torn down to build Sea World. I've always felt so important about that...lol. Next stop = Torrance! So I know Palos Verdes. We only stayed a year as it was just a pit stop. So bought first home in CA in Westminster. It was 1961 and 3 bedroom home with den, dining room, kitchen, living room, etc. was $18,000! Can you imagine?! Where I lived is entirely Vietnamese now. Glad you didn't need coiling, etc. If you feel you aren't getting enough care to make you feel comfortable about your health push for more attention. Grrrrrr on insurance issue. I worked for Blue Cross for years and am aware of all the cr-p that goes on in insurance industry. Keep calling if you are not satisfied. Ask for manager. That always makes them get busy. lol I did a lot of Google searching about my symptoms before I found this site and am so happy I did. I have learned so much here and found so many people that have exactly the same symptoms as I have. I will admit that sometimes Win says some Cockney things that I have to look up on British Urban Dictionary site....lol. Okay...I admit it...the first time my surgeon said the words "pipeline" I started internally humming that song and have trouble getting rid of it now. lol. One day in Huntington Beach a group of us went "grunion hunting". One of the guys had a guitar and played that song. It was pretty cool...although I don't really enjoy catching buckets of any living thing just so we can massacre them. haha. Take care all of you. Keep positive John. Write back when you get a chance.

John! I'm so glad to meet you but so sorry it was in this way. I have a friend named JCMatson here in Illinois. He is one of the funniest people I have ever met. So glad you still maintain a sense of humor. It will help you so much. I have read your posts and chuckled at your sarcasm over your dealings with various people. It is amazing how much craziness is out there, isn't it? I wish I could tell you some of my stories of my 6-1/2 week unscheduled visit to my local hospital but quite a lot would be censored by one of the moderators...lol. So - I lived in Orange County, CA for 28 years....Westminster, Fullerton, Placentia, Anaheim, Santa Ana, La Habra...more but it's wearing me out just trying to remember them all. (I was a bit "independent" in the 60's and early 70's..lol) One more place that you might laugh at = Hollywood (right behind Aquarius Theater - Hair was debuted there in 68 Win...Age of Aquarius..now you can sing it) I ran away to Sunset and Vine at 15 and then ended up in Brentwood-ish area. They found me three months later which launched a lot more moves...lol. My sister was a wonderful environmental artist in Venice -traveled to Europe, NY, etc. with her exhibits. At any rate, I wanted you to know I get where you are from. So....when I had my first son - 33 years ago - we moved to my husband's original home base - danville, IL. Then......we couldn't get out! lol. We left California to get away from all of the thugs in LA...hahaha. Now in Champaign/Urbana which is a very nice place. Enough about my California connection. What hospital did you go to? Some of what you went through sounds so crazy but so typical of our dealings with "professionals or customer service" these days. I had a subarachnoid event June 3. One aneurysm was coiled but they found 2 more so had to go through coiling process.I ended up with a shunt also. I don't remember 5 weeks of my life. Luckily - and after some crazy stuff which I will relate to you later - I ended up with one of the best neuro-surgeons in the US. He saved me - along with some of the best nurses on the face of the earth, I'm sure. I had a collapsed lung, feeding tube, etc. I also acted like a fool every chance I got if I came out of my coma for a minute. So...had a follow-up angiogram a month or so ago and they found a new aneurysm blossoming in the same area as my others. I am having a brand new procedure called pipeline on April 21st. This will route my blood flow to the left of what I call my Junkyard and avoid having the blood flow slamming into the other stuff all of the time. Jeez. I have to make dinner but would really like to follow you as you go through your healing process. Feel free to PM me any time. Along with the others, I would like to suggest you visit the Green Room. I think you will enjoy it and Keith will make you hungry every day so stock up on food. Careful though! Win is looking for more choir members! Get out your songbooks. Much love and huge hopes that you feel better every minute of the rest of your life. Carolyn

Thanks Daffs!

Jane - I am also sending you positive thoughts! Use Positive Imaging. Picture yourself free and clear and with a long life ahead of you. A lot of people are praying for you. Soak it in and feel the love heading your way. Good luck! Love, Carolynusa

Thank you all! I love every one of you (Win is my favorite - lol) but I love you all. I am waiting for approval from Pipeline creators and will let you know when that comes through. They might say I'm too old and my eyebrows are too white - so...no way. lol Much love Carolyn Pipeline

Thanks for all of your support. I really appreciate it. I have researched the device - a little tiny thing that looks like the spring inside of a pen. Fun side note: It was developed at Stanford University in Calif where Steve Jobs and all of his hooligan friends began the development of the computer. So...they have a good track record - maybe! I am all for it as opposed to having one of those annoying and uncomfortable angiograms every month or two. That doesn't seem to make much sense. I totally trust Dr. Wang. I look upon him as a neuro genius who actually cares. He got me this far against a lot of odds. He held my hands and looked me in the eye to say...Carolyn, I am more than happy to help you if I, as a human, am able to...and I know, if situations were reversed, you would do the same for me. Phew! Anyway, I feel I will be fine with it although will always worry as that's my style. I so appreciate all of you and the fact that the site is here to help all of us. Macca, I don't know what you did before sah but it's not too late to make writing a new career for you. You are amazing as I have said before. Thanks all of you again Carolynusa

Hello to all of you. Wanted to share the latest regarding my sah and what is coming in my future. Allow me a quick history just as reminder before I get into new stuff: SAH 6/3/14. Rupture. 1 coil. Craniotomy for 2 clips. Shunt. Coma for month. In hospital for 6-1/2 weeks. I don't remember anything but last week and a half. Meanwhile the neurologist is still messing with my anti-seizure medication and I still have headaches, ear noise, dizziness, you know...all of that. It's been very rough for my family and myself these past 8 months but, as my first post sah angiogram came back okay we were feeling a little more optimistic and we were working on how to live with all the changes my sah brought about. So...I had my second post sah angiogram last week and saw my neurosurgeon yesterday for results. I could tell something was wrong almost instantly...just felt it. He began to show the latest pictures of my brain to us and, lo and behold, there is a new "bump" brewing in the same area as the other three. It seems the arterial highway has a fast lane that heads right to that area and hits it pretty hard and it is a very weak area. The options are 1) ignore it and hope it doesn't rupture..just get constant angiograms to follow it. 2) Try a brand new technique that just received FDA (Federal Drug Administration) approval in the very recent past. I would be the 8th person to ever had procedure at our pretty good neuro hospital. It involves a "pipe" that is kind of a bendable tube. Sheathed and run up from groin then placed right below aneurysm mess to divert main flow of blood around it. My surgeon very excited about it and thinks it will do the trick...at least for this bit. It's so new the company that created the pipe sends a proctor to each of these surgeries to control them and record results. So...all of this is being set up to determine if I'm a good candidate. In the meantime I'm pretty depressed and scared about it. I love my surgeon and he held me as I cried in his office. I have to trust him. Just wanted to share latest and maybe pass on a little info about new "pipe" procedure. Take care all. Be well and, if you haven't tried it yet, sing along with Win. It works! Carolynusa