MaryB

Hidy Ho Kris, That would be great if my life did not consist of working, resting, working , resting .........If I did not have to work I could do more, be more at peace but since that is not possible. I will have to find a way to cope. Because all the resting in the world is not enough. Peace out, maryb

In my heart of hearts I do not think they have enough information on us and our aftercare. I wonder how many suffer with after effects? Do most people turn out ok? Are there some surveys out there? I have “good” questions today to ask, if only a doctor would walk by! Winter, it took me 10 years to be diagnosed with fibro as the health community was not believing it to be real. I saw great rheumatologists & cried when she put a name on it. By the way when she left that practice the first replacement I saw after her told me that he did not believe in fibro. I was devasted. When my feet and hands went numb and I was losing balance I made an appointment in Chicago for a top guy – all he said was I needed a certain fibro drug. I was dumbfounded not one word on the new symptoms that were frankly freaking me out. Did not explain any of it to me – I ended up finding results on my own research. Similar to finding BTG. My feelings for what we are going through are similar to those days of being not believed, that we are only seeking disability insurance (in the US?). But once they find out we cannot stop working because we carry the insurance I would think that would change their attitude. I am sure they see their share of people just wanting disability but I still think that they at least have to pretend to care! I know they have to weed out the “fakes” from the “reals” but I think that this would be a no brainer- no pun intended. PS my GP has always made me feel good about myself. He would see me and groan “Is it going to an easy one today Mary or am I going to have to think really hard?”

Macca, Do you think/ feel that once you had your brain issue that things just go haywire? I have always imagine our brains/system like a fine tuned Swiss watch, and when one thing goes off than it is like a domino effect. I felt this way for years since I have had my fine tuning button fall off. I get the mechanics of how it is all connected but I don’t know that doctors understand how that feels but it is for me first the thyroid, then the hormones, then endometriosis, then the fibro etc….. on and on. It is like having your shoulder operated on it is never as good as was before but it is better than it was when it had a torn rotarer cuff. You can not make any of it perfect again but with the right doctor ( good luck finding that one) but the mechanic of how it is all interlinked it fascinating if it were not happening to you! MaryB PS David- when I do go back to neuro and when I do see my GP next time I am asking about CFS and Fibro since both are similar and come after someone has had a traumatic event. It makes sense in my head as I knew what fibro felt like prior and it was like someone sucked all the engery out of me. They say to exercise but it was like my leg did not have the engery to do it. I left the water last night as I had that feeling of I cannot move my limbs anymore they are zapped of all energy. I had to rest on step before I could leave. I feel that way walking up my staris at times I can barely make it as my heart gets racing ( which is a muscle) and my legs go weak. Just saying for me.

Davey~ I cannot at this point accept where I am. I can accept what happen etc... I cannot accept dragging my rear end around in a fog, sorry- someone has to come up with a better plan for me. I can on my good days but if I have to work another 10 years I need some kind of help as this "ain't working" for me. The thought of one more health issue happening to me would be the last straw! I just need to see some light at the end of tunnel, some hope. I want and need to productive. Heck all those years of judging non productive coworkers is going to bite me in my behind! I need some joy in my life. It is easy to say but when you work and cannot do one more thing in your day it is hard to drag yourself around to find an ounce of joy- ok I do have an ounce of joy but shall I say FUN. I lack FUN. I am a fun person or at least I use to be! I get a peek every now and then but it is not often enough to sustain me now. Nope, this is not "good enough" for me. I am ready to move on or give me 2 good days a week. Let me rest one day and feel rested and have a good day the next day. I can even reason why I have gone 2 steps back with headaches as I am using my mind/ reading/ comprehended more. But GEEZZZZZ Marie enough already.

Well said Carl. I am stuck in reverse at the moment. May be due to upcoming one year anniversary with higher expectations than I should of had. Maybe understanding this chapter would help move to next chapter, I certainly feel that way. I do not have it together at all right now. Thanks for the inspiration and thoughts. maryb

Oh Kel Bel you are so wise to figure out that appointment thing!

Hi I am coming up on my 1 year anniversary and I am a mess. I really thought I would so much further along and I am so full of self doubt. Do I have more headaches again because I am thinking more? Why can’t I get pass a ½ a day? Will this ever even out? I watched a TV show tonight- I would tell you the name but I cannot remember about a live hospital cases, a man was given a new heart from a jogger that “suddenly clasped with the worse headache of his life”. I was so taken back when the surgeon said that, I cannot explain the new set of emotions I am going through. I certainly feel as if I have a clearer mind. I watched Oprah Sunday Show with Jill Bolte Taylor, although I have seen her on TED TV, this was a different interview she had on Oprah. I get angry that people don’t want to educate themselves and be enlightened by this. It is not just because of our own brain injury but what about a loved one with a stroke would you not want to be better educated to understand what that stroke survivor is thinking? http://www.oprah.com/own-super-soul-sunday/Full-Episode-Oprah-and-Dr-Jill-Bolte-Taylor-VideoI I don’t know maybe I am depressed more than I think? I have been given a second chance to live – to be reborn in a sense but why am I still asking so many questions? Why can’t I just go with it? IS it because you never feel well? Can’t make any real plans? You have to be strategic with your energy? That in itself is exhausting. Spelling is exhausting, yea that is why I have more headaches- spelling. I do not even come close to getting it right if I am taking notes. I should have shown the Dr. my notes I took while he was talking. I did not even come close to spelling one word correctly. As she bangs her head on table……….LOL

You know ONE more thing. IN my job, we remind staff all the time that that client loves their pet & it is one of her most cherished things in her life. Even if it wants to bite us every time we look at it. We are reminded that some people have an abnormal attachment to their pet for various reasons- may of been the sons cat and the son committed sucide, or that the animal was there for them through years of chemo etc..that they have no friends, ...... Really do human practices not have these conversations?

:devil:Well Davey, I am glad you are not given up. I after having a month of thinking about my 2nd neurologist and reading more about chronic fatigue I am a bit more understanding. I wanted answers for WHY I was sick prior to SAH. I mean just as tired as now. And he was truly following up on that but was not sharing what he was thinking. I was afraid they were missing some big clue. I get it know that he is doing the follow through on the follow up I requested. I have the inconsistent blood pressure but not like yours. YIKES! I just want answers to being so tired and headaches. I cannot tell you how disappointed I am that they are backkkkkk! What happen to the Sept appt? Did you lose out when you hung up?? Did the weekend knock you on your hiney? (Noun 1. buttocks - the fleshy part of the human body that you sit on; "he deserves a good kick in the butt"; "are you going to sit on your fanny and do nothing?" ****, ass, behind, buns, derriere, fanny, hind end, hindquarters, keister, nates, posterior, prat, rear end, tooshie, tush, seat, fundament, backside, bottom, stern, rump, tail end, tail, rear, bum, butt, can body part - any part of an organism such as an organ or extremity torso, trunk, body - the body excluding the head and neck and limbs; "they moved their arms and legs and bodies") Never say Fanny in here. There is no excuse for the way that nurse treated you. My husband wrote my Neuro surgeon a letter about the way we were treated and left us uninformed as was the nurse that they nick my artery during the angiogram. I came back into the room repeating the same 3 sentences over and over. I think although we were treated fine he after that he knew we weren’t going to settle for less than quality care. It made a difference that we were not jerks but that it was stated in letter as a "would have been professional if we were told"... ASAP. After that we had a new understanding and he took all the time in the world for me. I feel I am going to work myself to death as well. I have no answer there. I have no idea what choices are even out there. I had such a light bulb moment about the ADHD medication my GP gave me last summer b4 SAH, stroke, yada yada yada……. My GP is on vacation (I know because his dog is at my clinic boarding). But since the neruo said he was going to try it anyway I thought what the heck the next few days. I certainly could concentrate better and get things done but it is short lived and I am only taking ¼ the dose. CHICKEN that I am, even though I was on more medication last summer than now. I am desperate to move on. I just want some normalcy in my life back. It feels so good to have a good day. I would be happy for 2 a week. Bargaining phase? Do you think that neuros don’t discuss for fear of being sued? I have no idea? But geez, if the community of Neuros does not know the answer that is fine with me just say so. That would make me feel better than thinking I was crazy. I have to say the psyche evel was well worth it. To talk to the physiologist was the best ever! Just to be validated for my fears, concerns etc. Good Luck Buddy Boy! MaryB

Cathmat, I am in the same boat. not with vertigo but jsut tired of beign sick and tired..ready to change the book and read something new! Sorry you feel so bad. I understand. I am pulling at my boot straps as hard as I can and they won't comeeee up! maryb

Bev, I read as much as possible about the bleed over and over again, I even ended up making my own personal pamplet so I could maybe "get it". I never really question it happening again as it would be really rare. I had a NASAH as well. I had a 4 Corona night and my 6 month headache ended - I am thinking I need another one. I have not had wine in 100 years but I did have a beer or two within in a few months. Maybe 3 months? You are still so early on- are you able to talk to your doctors about your fears? I loved my neruo psycholgist. I cannot spell or care to today. But he was so kind and made me feel so at ease with my million and one questions. Maybe you can request a consult? XOXOX maryB

What a firestorm today! I think we all maybe had a littel pent up anger. I know people are always looking for my scar. I did not have surgery. I am REALLY lucky becuz mine would of left me severely damaged if they did surgery or if it did not stop bleeding. Just last week my neighbor said the mengioma in my skull was not something affecting me. Well no......but it is in the list of brain issues (sah, stoke, bleed & vertetal artery dissection) that it does affect my outlook at times. As my mengioma is in the tumor left posterior fossa (Tumors that arise in the posterior fossa are considered some of the most critical brain lesions due to the limited space in which they can grow and the potential involvement of critical neural structures. For instance they may cause facial symptoms or loss of hearing via compressing either the seventh (facial) or the eighth (acoustic) cranial nerves, respectively. They can compress the brainstem causing clinical manifestations of brain stem compression like cranial nerve deficits, or the cerebellum causing troubles with walking and balance, or the spinal cord causing motor or sensory deficits. Meningiomas in this region can also cause blockage of the flow of the cerebrospinal fluid (CSF), or hydrocephalus, causing the intracranial pressure to rise which usually manifests by headache, blurring of vision, nausea or vomiting.) I somedays cannot help to want to tell my co worker with cramps to buck up, if I can show up to work and be productive anyone can, I am the oldest one there. I have the biggest deficts there and I still if were garaded on productiveness I would be in second place . I know it sounds hateful but that is where I am at this summer. It is a struggle to maintain with headaches and fatigue. Someone left a bottle of medication out in isolation for 4 days which means no one noticed it for 4 days. Then all the excuses about beign busy etc....... I still can do rings around these woman and I do not understand it. I need to be told that - "Yes, Mary you do great for all you have been through and yet as I can tell it about kills you at times to be here I can see you are much more productive than most". augh! Ok I am walkgin away from this LOL!!! maryb

I sometimes feel people are just sick of me beign tired, lack of enegery, headaches and generally feel like I should "move on". It may just be me thinking that of myself! I am so ready to move on, I would love nothing more than to be productive and feel good jsut 2 or 3 days a week. I keep thinking I am not asking too much. BUt I know as hard as it for me to deal with this daily it must be really hard for someone to comprehend. On Oprah Sunday morning new show she had on Dr Jill someone who recovered from a stroke ( 7 years). As much as I want everyone to watch that episode to see how she felt and how educational it would be for all us to watch to understand how Grandma feels trapped inside a speechless body I cannot make people watch it. Those are the teachable moments that hurt, bother or jsut annoy me when we cannot make a difference in someones attitude. I have a former co worker who in her early 40's just went thourgh breast cancer treatment and had no insuance but was covered by a great program in our state etc. I had such hopes for her to come through this as a changed person but i read her fb post or get a text from her and see she is back to her hateful, mean spiteful self. I am dissapointed in her as she lost a real teachable moment where the commmunity came out and supporter her. It should of been a life changing even that made her a better person. SOrry all the typos. I cannot focus or think well today.

Okie dokie. I am sorry your friend was so dumb to sven say such a thing. I am so lucky that I have not have any real "downers' in my life. I discarded people that sucked the life out of me sometime ago. There for I was a bit ahead of most SAH'ers having some medical issues prior to SAH. I do not allow peoples insentivities or ignorance to control my well being. I have do not have any "spoons" ( SPOON THEORY) to suck my precious energy out of me. I have enough in life that I must handle but people, friends, co workers I will not put up with. I have nothing to give those people. I discard them like junk mail. Besides I believe I am above people so insensitive & ignorant anyway. If you are my true friend etc you would of done some goggling to find that answer and educate yourself. I have a hard enough time getting through my days. Someone is either just not very smart or they were trying to make light of it because they are so insecure they do not know what to say. AND working with a group of tight knit woman over the past 20 years some with some real insecurities, I can understand that they do no tknow whta to say at a funeral, or a time of comfort etc... BUT there is enough information on how to handle those situtions that I find I have lost my patience for them. Mary

LOL, Kris I agree. My feet are freezing right now as it only takes a few degrees either way for me to go from freezing to so hot I cannot stand it.

Hi I had a headache for 6 months, when it left it was gone for a couple of months now at 11 months they are back. Often a right side of my head and right eye kind. OR the back of head or the front of head. I am probably doing too much thinking? Maybe since I am a bit more normal and I am doing more? I am processing better until around noon.Also have been practicing reading and writing. Should I stop? Anyone in the same boat with me?? Thanks , maryb

Welcome Puggo, We must have the same exact damage- as I have the same symptoms! REALLY! I had my bleeds Sept 2011. This site is the glue that holds me, or I would think I should be back to normal. So how are you doing? Do you work? What do the Dr. say about your recovery? You know I did see a neuro optho eye dr adn foudn I have blind spot in both eyes something you may want to ask about. My regular eye dr. does not see it but the specialist can tell they are there. I am use to them for the most part now except I always turn the shopping cart in to the end of row........ Everything is worse when tired and I have not had enough water to stay hydrated. Goodl uck,mary

Jill I have spastic fingers so I never use the correct keys so I give everyone an A+ ....I am in the USA so I do not "get" a lot of the stuff you all say over the pond but people are kind enough to fill me in. Good for you! My mother in law got her first computer in her late 60's, way to go! Have you found the GREEN ROOM. That is a daily chat area about this and that.

Well done Jill! Feel free to post with all your mistakes as I do even when I think I did a very good job. My areas of weakness are fatigue, reading, writing and memory! Like the others said, you are doing well for how short of time it has been. I tend to use up my energy too soon and have none left for later. Drink plenty of water and rest when needed. I was doing great at 8 months but when I started more responsabilty I had a major set back. I am almost at one year. I hope you have some help around you and support. I do not think I would mentally being doing as well as I am if it were not for this website. Take care, maryb

I cannot tolerate heat at all. The past 5 years have been terrible but this summer after the SAH was the worse. I literally feel after about 5 minutes of doing anything outside in this heat, I start to shake with fatigue and want to vomit. I have lichen planus and get a rash if I get hot even though I take a medical dose of anthistimes daily. I recently tried to cut back a little on them to see if it would help with fatigue but nope I just have several really itchy bumps from my experiment. This summer has been like living in hell with record highs & drought - I did better in the pool this year, last year ( comig up to my 1 year ) I felt I could not breathe even in the pool, I really struggled with the breathing /fatigue last summer as well but I think my head was getting ready to explode. So yes, heat & being hot really bothers me!

Shellie, I would think your Doctors would want to know about crying and not sleeping. Sleep heals. DId you telll them this was going on? Just wondering? mb

Hi Shellie, I am glad you spoke up about this as this is a place you can VENT & get wanted or unwanted advice! I think this place is the only place that made any real sense to me. Returning to work a little early maybe??? I did not understand the magnitude of what happen to me for 6-7 months although I was sure I was fine and doing great. I was off 3 months per neurosurgeon but never really understood it all until much later. I kept thinking I was good enough to start my normal life but I was not- although I was doing great, ended up being 5 months with a gradual fade in with mid day naps. Now at almost a year I am doing a gradual fade back as I am fatigued beyond belief. I just had a neuro phych evaluation and was so happy I did. Not only was it so wonderful to be open and honest about my feelings, fears etc. it validated where I was at in my recovery. I have such respect for brains now! I did not cry like a lot of people do but I had/have a more muted, unemotional responds. I just don’t talk if I do not feel like it, as in exhausted. I just don’t care enough about much to carry on a conversation. It is such the opposite of most people. I do not waste my energy on small stuff anymore. Hopefully you are drinking a lot of water and getting a lot of rest when needed. I work for a small animal veterinarian, so I knew I would be going back to a very loud, fast paced, think on your feet environment. I am surrounded by support at work and home which is so wonderful and a blessing. I am thankful everyday for my friends, co workers and family. Everyone has a different pace of healing and everyone has something different going on in their brains healing process. You can only be the judge of where you are at but it sounds like it is too soon maybe? I wish I had spoken with the neuro phych earlier and maybe I would not expected so much and beat myself up for not recovering faster. Good luck, maryb

I had a Vertebral artery dissection after my angiogram when someone picked up the scope and torn my artery. It was the worst pain ever- total electricity coming out of my eyes and finger tips. It was the only time I have ever lost it with pain and was screaming like crazy. I had to be very careful at the salon for 3 months after that, as my surgeon said it was right up there with brain surgery. It was during one of my "last" test after SAH etc....... http://en.wikipedia.org/wiki/Vertebral_artery_dissection I never read or talk about this too much as it is rare but ...now that someone put it out there. I wear my hair short so I have to go to salon monthly - I always have my neck padded when leanin gmy head back. MMos tof my headaches start in my neck and always have. MB

I agree with Sami, take more toliet breaks. I have always had on the few side of blood pressure except for past few years. ( now that is a sentence that makes sense???) TRY again.... I have, in the past, had low normal blood pressure except past few years now it jumps all over the place. YOURS was outragous. I was getting some 158/120's and worried as that is always when my head was hurting worse or I was not feeling well at all. I had it checked at GP and 2 different nurses checked it and one had the same as I had at home and the other was low. That makes you feel good, doesnt it??? When I saw neurologist last week it was 150/110. The nurse mentioned it was high but that was it. Take care Davey! mb

Holy Moly DAVID! That is really high blood pressure. I do not recall having burning sensation. Don't know if I have or don't recall. Sorry you feel so unwell. I think you need to see the Dr. I went to yesterday. I got an A for effort. Dearest one I take it you are not the one in Michigan that won the lottery? I took some headache meds, now need to feed myself....I hate feeding myself. You called your GP right? Take care sending you something- good thoughts as I have no spoons. maryb