MaryB

I am sorry, I have nothing to say that can help you. Good luck, mary

Justine, Welcome to BTG. I was going to do a question the other day and ask if we all are taking a baby aspirin a day??? I have so many bruises from taking one & last week I showed them to my Neurologist and asked will I bleed to death if I have another stroke etc?? Nope not potent enough he said, although my bruising was impressive for a baby aspirin. I am guessing the parent artery is one of the 2 main arteries? I had an inoperable bleed in one of mine, a stroke or 2 ( not really sure) , and a brain tumor was found so I understand your worry. It is not suppose to happen again they say or it is really very rare. So how are you feeling now? What is your status? I am glad you found this site it will be helpful and no question is too small or too big to bounce off our minds… bad term – Bounce off us. Take care, MaryB

Welcome Gaynor, I am coming up on 1 year next month. Great advice here. I want to add drink water, rest, eat healthy. I am/ was just reading a book - something like 495 tips for Brain Injury Recovery....and one of the things I wished I started sooner was my routine I have always had a rountine and know I am just starting to find it again. Start small but some kind of rountine even if it is for getting up in the morning. I use to spend 15 minutes looking at 25 pair of white gym socks. I had to tell myself "Just socks mary GRAB a pair". Also note sand post it notes are/ were my friend. This may be more for the up coming time depending where you find yourself in recovery. Good luck, mary

Congrats Kris! You have made it and have sorted so much out in your life. Onwards and upwards. Best of health to you! Maryb

Congrats Ron, Have a wonderful weekend. Hope your next year you feel better everyday! MB

So this is my second week of new hours. The water heater flooding the basement has justed (USED- see I am constantly using the wrong words) all my spoons for next month I think. I still have not gotten into the swing of this new schedule and feel exhausted, wiped out, my mind is like a colander or sieve..... .unable to process simple task at work what so ever. I swear I am worse than a month ago.. Maybe I just need a good day. I have had a little bit more going on but not like a concert, wedding, vacation. Just beyond simple minded. I have read more and concentrated more but I use the wrong words all the time. Dawn I could use boring and repetitive & sedentary! This will work in your favor. REALLY, just ask David and I. Ok, I will stop complaining. mb

Maria and Shelly, I was typing up a nice welcome note when the tornado sirens went off and I lost it when I unlugged the computer and went to the basement! So WELCOME! I am glad you both found this place, it is MY GLUE. My place I come to read to feel normal. I am impressed the Dr. said to find a support group as mine seem to not want to acknowledge there is any problem from the bleeds. I swear it is like they want to make us crazy. I am almost at a year - next month and left the hospital thinking in a few weeks I would be back to work, only to find out that the artery dissection would take 3 months to heal. WOW was I out of touch! I did not make it back for 5 months and jsut recently cut my hours back. I am trying to do my own mental therapy!!! Reading, writing, thinking, you all know the basics! I will meet again with the phycologist (SP??) next week to go over my testing I had done-maybe he will be more reasonable believing me I had BRAIN TRAUMA. LOL. I cannot say how dissapointed I am in our medical community. At least here in the USA, how out of touch they are. It boggles my mind. Since I have been on BTG I know see such a difference in the after care and information at least you are able to google. They may well released me to a deserted island and let me recover there! There are so many kind and understanding people on here that truly feel your pain & frustraion. So helpful and giving- I mean I really cannot imagine how mentally physched SP??) out I woud be if I had not known this was normal. The only Dr. to tell me it was normal was my GP , too bad I can never get in with him. My neurosurgeon was understanding but the 2 neurologist I have seen - wow...... I wonder if a neurologist has ever had a SAH????? HUM???? Take care & once again welcome. Hiya cathmat, Kris and Sarah ( superwoman). maryb

I have found that when I work I get such great satisfaction from the job I do and that I almost feel like normal again until about 10:00 am and I start sliding down the slope. I need to add routines back into my life with work and home – sounds simple enough but I am making sure my keys are always attached to handbag, phone is near the purse, list and schedules are made out along with my normal pattern at work as I am not use to having or too use to having someone already doing my morning routine of stocking and organizing my rooms. I am simplifying my life at home. I know this is like working a job as well but they are my daily brain processing lessons. Cathmat- How are you doing with working in such a mentally demanding field and keeping your concentration level strong for that many hours? I feel I should work 8-12 noon only because by noon I am working with about 35-50% of my normal abilities. Do you get long breaks? Dawn – What kind of work do you do again? I think you hit the lottery!!! I just reread your post and earlier I could not understand it. But now it sounds like the jackpot to me. Not everyone naps???? Oh my! I actually do not nap as much as lay down now. If I am working I pass out practically! SL- I think like I have said before any trauma, surgery, flu bug etc.. will knock us all back a few extra steps as we do not have the reserves & it is like having fibro. We have lost some of our “bounce”.  Bounce is missing with spoons? Sally – good for you, it is important to feel that you are helping in even a small way and it is good for our self esteem. Trying to spell “esteem” is good for my self “esteem”. AUGH I hate words! Have a happy evening you all. Keep on trucking men! maryb

My reduced hours are keeping me wiped out.......instead of 7:30-5:00 Wed, Thur & Friday, 1/2 everyother Saturday and weekend treatment now I work Monday &:30 -5:00 but no Dr in afternoon so less brain cells are needed, off Tuesday, &:30 to Noon on Wednesday, off Thursday , 7:30 -5:00 all day appointment and every other Sat until noon plus weekend treatments. Last weekend treatment was 1 dog 1 pill twice daily love that!! Still however Monday I woke up dragging, same Tuesday. Today water heater flooded basement- don't even need to tell you about that mess and work......just got off work and scrubed floor with soap and bleach water........ Anyway I am finding I am only good until noon anyway I look at it. I am at 11 months now and still need to take it slow. I am working on being my organized as I lost that the past year and being organized really makes life so much easier. I do however do some shopping locally, and am trying to read and write more so I can get the kinks out of that. SO maybe my brain cells I thought I would have with less days in a row are used up reading and writing.......augh....& scrubbing basement floor. Dawn go back as slow as possible is my advice. If you feel better sooner great! MB

Kris, Up until my 8 month mark I felt like an elderly person. I really just sat there and did not process much of what I was told. I just sort of shut down. I know now why elderly or serious ill people just shut down- it is a coping mechanism. If I were being told I had terminal cancer I do not know if I could have processed any of it. I was so numb I could not care or process it. I always wondered why people did not want to go to the best dr in the field or research everything there was to know about what was going on etc.... I get it now they just can't. mb

Bev, Be sure to drink more water a day than you think you should have to. Makes a very big difference in over all health and recovery. I feel horrible when I do not have enough water.

Bev, All sounds normal to me. How about that unexpected slam of the door? Early on I could not stand the hum of the refrigerator in the house. Everything humming was driving me crazy. That has really improved but I my dyslexic (not spelling well today)is so much worse. I cannot HEAR the diffference between words packet or package or when writing I know my word may write know for NO or now or just type any word that starts with a N if I am really tired. My startle reflex is aways on high -so now it is like full blown give me a heart attack. I talk like - the neuro examiner does -when I am at work or like someone who speaks another lanauge-- DO YOU WANT ME TO DO THAT? and it is really loud and hang on each word making them very clear to understand - People think I am being mean but this is how I need to understand sometimes. I want people to talk that way to me when I am fatigued. LOL Yep floaters and eye problems. Saw an neuro optho and have some blind spots- I am use to them now but floaters are back when tired. Good luck maryb PS totally cannot hear a TV program with talking and music in background- it is like music is louder than voices. so what do I do but turn tv up???

Wow, Mike how well you have recovered from such a awful event. I see the beach as such a wonderful place and so many I know find it to be their place of comfort. Interesting your mind went there for a little vacation. ,maryb

One other thing as I have worked my first week of reduced easier hours - It has left me completely exhausted. I just feel awful, zero engery........ I was really hoping to have more energy for my home life but it has left me more time to rest. Friday I worked 7:30-5:00 and slept from 6:00 until 8:30 before I went to bed. I did not same today work untill 11:00 slept from noon till 2:30. Hopefully tomorrow I will be a bit more caught up. Just can't win some days, weeks..... mb

While I live the SAH paradox, as does 99% of the other survivors. I can't help to wonder if waiting for answers or help is worth it. I will see my neuro testing results and new neurologist etc within the next few weeks. I think the answer will be "It is what it is" as he looks at me with a blank face. I think we will all strive to get better but we will never get the answers we want. I am not mineralizing our SAH but really how different is my life next to my friend with breast cancer/ Epstein Barr / and major failing knee surgeries every summer for 5 years in a row- along with the worse insomnia ever? Or the person struggling with the life they did not dream of? At 53 I see more people disappointed and surprised at where they are now instead of the dream of health. Which I think we all take for granted until we are hit in the head with a baseball bat. I am in no way making light of our SAH but I assume most of never said why me? Why anyone? I am maybe feeling a bit less self absorbed with my problems this week with the upcoming anniversary of my brother in laws accident which killed his great granddaughter in a pile up accident last year. I think how a retired fire chief can cope with the memory of being paralyzed in a burning car handle the memory of seeing his great granddaughter trapped in her car seat. He said he knew she died on impact but the thought of not being able to remove her from the burning car seems to be a memory that haunts me. I look at my BIL Tedd and see how well he has had to carry on- he cries, he does not “NOT deal with it, he has permanent injuries from the accident etc. He was cheated as well. I do not want to be the black rain cloud but for me I think of what could be so much worse to live with. I may be doing what stuck with me from my kid’s neighborhood friend’s mom. When she lost her son in a stupid ATV accident and I knew that day it could have been any of our children that day. She said that they only way she gets by when she thinks of a worse situation that has happened to someone else. Ps When I typed “little black rain cloud” in words I heard “thunder” come out of my computer speakers. Just to freak me out. What is up with that? Maryb

Pete & Chris, I imagine time will tell. It is great she seems to be doing so well. I can only say that my husband has to be given a gold metal for taking care of me, the house, and animals. I am coming up on one year and he has never made me feel bad for sleeping, resting and won't allow me to over do it like prior. I sometimes get to mow the lawn but I can never finish it! Anyway I never feel pressure to cook etc. I went back to a demanding job after 5 months off and last week I went back to reduced hours. I crash when I get home and sleep/ nap most everyday still. I suffer from fatigue and he never makes me in anyway feel bad about it. He has been a wonderful support. He just doe snot eem to expect me to do anymore than I feel I can. Good luck, Mary

Best of luck Sam!

Thanks Sam, I do have tingling in my nose left side as well as my left upper lip not always but weekly and it feels so weird. I have to run to work- thanks for your responds. mary

David, I have lived the up and down life with fibromyalgia for the past 17 years. Up one day down 7…….. I use to think I was cured all the time. I think that means I am an optimistic person. I know that is why I can cope with my deficits better than most because I have done it for so long and accepted it many years ago. It is not the same as given in and giving up but it is acceptance. I was reading Karen stages of grief the other night and I think I went from SHOCK to Acceptance and nothing in the middle. I never really had fear as I think the SAH or one of the strokes broke my fear response – just now starting to get a few minor panic attacks which is good because that part of my brain must be healing ( compare to being seconds away from a head on collision and not even raising my heart rate one bit). I still think what exactly did I do to feel great. I live for those feeling great days and people will say I do too much during them but it is the only time I get to have the normal back in my life. It is soul food to be able to feel good and work somewhat like Mary from the past. I do find diet helps me with plenty of fresh fruits and vegetables but I have the other ………being autoimmune and eating well for one thing is bad for another. I swear that bothers me more than anything – I cannot eat an apple as the cross pollen in the apple will swell my tongue up and dry my throat out. Even while I am on large doses of allergy medication I still have the reaction. I HATE that worse of all. Would it not be great if our life had instructions and Doctor that understood we need them?? I discovered my 4 beer Corona night got rid of my headache at 6 months so I keep thinking beer cured me. Of course I cannot take anything for pain as everything makes me itch!!!!!!!!!!!!! Not to one up you or anyone but I cannot even go here on this subject with most people – because maybe ONLY a handful “get it”. def: A paradox is a statement or group of statements that leads to a contradiction or a situation which (if true) defies logic or reason, similar to circular reasoning.

I had no idea they just do not fix them when they find them! What does that feel like? Are you aware of it? How did they know to even look? Welcome Sam, Good Luck - please keep us informed. maryb

Welcome Bev, I am glad you found this site. Much useful information here. I had my SAH in Sept 2011, I just now have been able to "read" and "write" with intention. I saw a neuro eye Dr. for vision loss - which I have in both eyes but right eye is worse. I have had floaters, flashes for a couple of years. I also had an episode what felt like a sprarkler going off in my eye about 6-8 months prior to SAH. You are still very early in your recovery and I am glad you are seeking counseling. Many on here have children. I hope you have a wonderful support system set up. I could not of done it without my wonderful husband, family and friends behind me 100%. But this site is what keeps me sane! Good Luck. Mary

I have no information to add but the neuro people just drive me crazy - it seems if it is not a proven fact the symptoms are not real. I could go on forever with my distaste for the way I have treated over the years. I personally hate the way they study you when you talk- which I get is their job but fake it please a little. Sorry Dylan has to go through anything at all. That is what I see unfair in life! But I wonder if a diet diary would help maybe it is somehow related by the foods he eats. No one really believes me that fibro is a neuro issue more than a arthritis one ( as I have seen a number of Rheumatologist over the years but it still goes back to a mix up in our brain)---- but food is giant with fibro and IBS one of the problems people with fibro have. All of it goes hand & hand with fibro. & your brain. My theory is fibro is damage to the nerves sensory whatamacallit that has been damaged- FACT often after an "illness or accident" so that is why so many of us when I read about problems wonder why more Dr. have not tired any of the new Fibro medications that cover “pain, anti depressant, nerves pain and numbness” on more of us. I think it is one of the reason I have some issue under control?? I wonder??? Now being autoimmune you have to look us as a whole complication person. I have a host of allergic reactions even while taking a dose of Allegra 160my the am and a dose of Zyrtec in the PM often not combined to keep my reaction of Lichen Planus under control. I still discovered if I eat an apple – because of cross pollination of fruits and vegetables my tongue swells up and throat goes dry. I use special chemical free toothpaste called Cleure that I buy online prior to that it was like brushing my teeth with acid. REALLY. The first time I used the toothpaste it was so soothing, I could felt no pain what so ever. I am writing this as oral tissue basically is the same tissue that is in stomach, intestines and bowels, throat etc..Usually most problems start in gut… us “advanced” tissue people may move up higher. This is why maybe a diet diary is important. This was a giant finding for me as every day I felt like I was pouring acid in my mouth and one day I try a ANOTHER new product & it completely is pain free. My dermatologist now recommends this product. Anyway 2 years later during my dental exam I thought my mouth was numb as it did not hurt but it was healed so much from the no chemical toothpaste. This is my thoughts as well as a gluten free diet trial- which is hand in hand with fibro – which I believe now we ALL must have to some extent from my read everything on it the over the past 17 years. Sorry if it is more information that you asked for. Good Luck, XOXOXOX Maryballrightsomeday:-D

Karen, Thank you. When I read that I once again feel I went from SHOCK to Acceptance. I do not know if past life experiences ( of mine and others close to me with worse problems) have anything to do with it, I don't know. But sometimes I wonder if denial will creep it!!!!!! I feel I had so much wonderful support from first off my husband who is still wonderful to this day. He expects me to only do what I feel I can and never makes me feel bad. Which adds respect and trust etc.. Thanks again Karen for all you do for us and have done in the past. Your name should be "Karen -maker of glue who holds us together" Kindest regards, maryb

Sandi, Your forced "retirement" has done you wonders. Your new name sahll (shall- LOL) be "Zendi". You are proof positive that it takes as long as it takes and forcing it does not do you any good. Well maybe it does as if it gets you to realize you are not superwoman or man.

Welcome Patsy~ It is a long hard struggle but I look at it as we are all - not just us SAH'ers but many folks have some kind of issue to deal with- fair or unfair it is how you handle it & such is life. I think I am lucky as I am alive with some short term memory loss and minor issues compared to some (as annoying that is a for a type A personality). I think I was blessed somedays in to being force to slow down. It has amazed us all that we have no handbook or information what to expect after a SAH. I thought I would be back to work in a few weeks then they said 3 months at the earliest - it ended up 5 months. Now at at 11 months I just had to change my hours to an easier schedule. I say don't push yourself it does you no good. Balance you life ~ I had a 2 hour eye appt today and the rest of day off of work but the exam was exhausting so I did not do much of anything all day. AND that is just ok to do nothing. I am blessed with a good husband that understands, good friends and family but this place is my glue. Good luck. mary