MaryB

Tough to give advice to kids.My friends both have different forms of skin cancer one is a birth defict (SP) and cause tumors in the body as well a skin cancers on body and he has melonoma ( the deadly kind). They cannot get their kids out of the sun to save their souls. Another has disbetics in theirs fmaily - did not hit home until the kids were morabily obsese and had to start pills. I do not think you can get your children to understand. Lucky me I have one that is takign better care of his health after the dr scared the poop out of him at his appointment about his blood pressure and cholesterol- he is 29. But he also saw his grandparents die of every nasty disease out there so I guess it is something you can talk about but they have to be willing to listen. I understand you feelings but I think as much as we care we can only do so much. I was thankful I was aready eating well and exercising well when mine hit. I recently was thinking about the guy my husband shared a room with when he had kidney cancer and the fellow had some major stomach issue but ordered fried eggs and bacon etc for breakfast and vomited the rest of the morning. We were just shaking our heads. The best gift you can give your children ( speaking of little ones now) is to start them off healthy with good food choices and put them in a sport at some point to learn about exercise. my youngest has worked on a golf couse all though college and he SMOKES but he at least says he always chooses the hand mower job cause it is the only physical exercise he gets a day. GooD luck, Here in the USA my deductable is $5,000 my MRI with contrast is $4,500. Mary

Oh Shellie, You poor dear girl! I was and am still recovering from my NASAH and stroke in 9/11. I am surrprise I am still learning but boy over doing it is a killer to my brain. I work in a small animal veteriarian's office as an assistant and I cannot rememeber anything ever.... some good days some bad. I need to rest almost daily and I take ritalin to stay awake till noon. I usually do nto take second dose as it makes my brain think too much. 8 months out is really early. I phased back at 5-7 months and still can only work 33 1/2 hours a week to maintain my insurance coverage. I follow a whole food diet and it helps with my fibro and pain levels I cannot eat processed food as it makes me feel worse. I take Cymbalta and elavil. I was taKING cymbalta prior to SAH for fibro and nerve neuropathy ( was stumbling and falling a lot). I think my best advice is I just started counseling and I am glad i did. I finally needed someone to give me direction. Have you had a neuro physch (SP ) elev? I think that was good for me as well. I just am so much worse as the day wears on. I think you may need to talk to someone about doing it all too soon. I just do not think you can rush into recovery. It is not like there is a time table for it like a broken arm. I am too as we all are how much longer it takes. I thought that the 3 months after my dissection healed it meant I was good to move on with my life. GoodLuck Mary

Very interesting Dawn. I am thinking about that. I do not sit very well but long to by the end of the afternoon. I do both physical and mental at work but I prefer to clean to clean my silverware drawer!

I jsut wanted to say although people tell me I do a lot ( and other days NOT ONE THING!) I almost have to have some thing to do sometimes or I think I will lose my mind. IF I am not wiped out I need to keep moving or I will become depressed.

Dawn Darling all I can say is DITTO! I have to plan fun or shopping etc........I have been extra wiped out and I often wonder if I did not work how much better would I feel? Work - next day wiped ..out work- wiped out. Has been extra bad last 10 days or so. It has nto just been the SAH & stroke but like 20 years of "timing my energy and good times". I would be happy to do my chores and work. If I gave up weekly chores is it possible to have a night out of fun. Like you can trade off the energy days for anythign you would want it to be?? I think I NEED for my sanity to have at least 2 good days every 10 days so I do not go down the sink hole of despair. You are not alone! Maryb

I did not think I needed a shrink but apparently I did! I pretty much answered all my own questions but the quiteness of the office was wonderful. No refrig or computer hum etc..It was like ZEN in there. I also have done some odd things like I can sort stuff for hours - junk drawers, messy basements etc.I love to organize stuff and I also only watch the same series on TV and pretty much nothng else. He told me it was my mediation so that made me feel better, WISH I could work sorting buttons all day in a quite factory with great benefits and insurance!!!!! I told myself on JAN 2012 I would spend time at least twice a month with a good friend and her small children, they need me as much as I need them and their mother needs a motherly influence as well. Boy anything I have to do on my own I do not do very well at but if I am accountablet to someone for I do much better. It has been a challenge and my house is like a toddlers nightmare! I sometimes have 6 pairs of sissors laying about, pills on the counter etc,.... but i make a staff place- would be sooooo much easier come summer. Last week we made cookies together. Simple goals .....but for me with work it takes every brain cell and more so I have to be patience and forgive myself for not doing more in my personal life. I work a day - wiped out a day etc.......... and granted I am on a boat load of drugs to keep this old lady moving. And yes, I get depressed. I would love to be able to go shopping etc on my day off. BUt geezzz the grocery store and cooking are my greatest challenges. Good Luck Scoobs. Maryb

Tony, Yes sometimes that works great for me. ALso soaking in a hot bath as well. As a person with fibro I get news letters & magazines from one of the sites that really is doing some great research on pain, finding cures etc offers lots of feedback as well. I always repost it on my FB page as pain is pain and it is interesting how it all works. The name is called Fibromayalgia Network, you may want to look it up as I find that their research can help almost anyone in chronic pain. Nice to see you here again! Maryb

Scoobs, I started therapy and it took someone to make me make some goals etc to have some changes in my life. That is the one thing I think is huge. Changing my attidude and thought process. Lucky a few here have really helped me with that. The other thing being in the US you really ARE almost thrown back into life b4 you are ready. But as much as working drains every ounce of my energy I do think something is to be said about using your brain and thoughts for something other than your own care is helpful. Certianly workgin full time is not the answer but I think as some have volunteered has really helped being out in the world a few hours a week. It also prepares you for life back at work someday. Those are my 2 suggestions that I think may be helpful. Good Luck, maryb

Hey there! I just got home from a half day of work and need a nap desperately but I see you are from Chicago Heights! I grew up in Crete but back in the day CH was the place to go for everything so I will pm you later. Mary

That certainly is just plain wrong. Can you call and explain your situation? Of go somewhere else? I would be just dumb founded but sometimes things end up working out for the best. I just do not know what to say. I think things happen for a reason for the most part but jeezzzz. I have been back to work and I just started Therapy! So what can I really say? I cannot cope well after my phase back in and I needed to step back and have someone guide me. Not working is not an option here as I carry the health insurance & I have to work like 33 -35 hours a week. I was doing fine. But I think the better we get or along the road in our recovery we do not realize how much we use our brains & wind up overloaded. SO maybe the cup is 1/2 full and you do not realize it yet?? Sorry your appointment was cancelled. I know how important those appointments are for us to get some answers. good lUCk mary

I am loopy from a muscle relaxer as i am stiff and sore as can be. But Michelle saw a specialist and I am very interested and curious what they find out over the next month on her work up. I think she has a 4 1/2 year head ache. Once again I keep reposting my fibro network post on FB to share they have some very good advice on chronic pain and illness. I still feel it all is in that big ball of them not knowing what to do with us as there is not enough research. Except fibro network is doing many studies. I need to go to bed I walked to the little gross store at the end of block thinking it would wake me up and make me feel energized. Nope, I am worst from the cold. I only have headaches from over doing my thinking, like on the days I work. I come home and can't function at all, so sorry no help. All I can do is rest and hold a pillow over my face. Right now I am in pain from head to toes and I am thinking about taking a major pain reliever although my mouth will break out bad from it, right now it is worth it. I started therapy a month ago and even though I answer all my own questions it is soooo wonderful. I thought I would not need it but I do. My processing goes right out the window at the first sign of fatigue, I feel so dumb I cannot spell or even sound out a word. Sometimes SURI does not even understand me. SO I think for my lack processing is my first sign I am going down hill, next comes the headache. I was thinking today as I was putting the dishes away how much I really HATE that sound, I leave to go upstairs when my husband does them in the evening. Very hard to believe I had an hour and half massage yesterday! And that word game is like playing a game in Chinese to me! Crappola on that! I cannot even begin to process it, just like Michelle we think that part of our brain is not working at all!! Interesting we are completely blank when we see those words. Wonder what that is? I will have to ask my sister in law why we cannot “get it”. Once about every 6 week I am amazing though! Saturday after hours I handled an emergency really well.

Sorry Kelly, I know we spoke earlier about this. I was thinking back when I was sick prior to my head exploding and I knew I was not right for months. I look back at 2011 and my photo albums show I had lots of company and trips etc. I was sometimes confused and very tired. That deep fatigue that we had or still have after SAH. I had a bolt of lightning hit me in my right eye one night that felt like a sparkler had gone off in it. May odd things but no one have ever had an answer for any of it? I do however get "Well you did not feel well before the SAH". That is what they say when I ask if this gets better. Duh? Just try not to worry too much but if it continues seek answers. I wish I would have been more aggressive when I was writing nonsense in charts at work and my writing was falling off the lines on paper. I do however seem to have more symptoms now again but I think it is because I do more now and that is too much for my brain to process? You are a busy gal and maybe taking a step back a little for a few weeks? I thought I had done that recently to control my blood pressure which has been all over the place since 2011 as well but my sentence of the week has been “Did I know that already?”. So while I feel we get so much better in areas our brains may just be overloaded at times??? Big Hug Maryb

Welcome, Sorry you and your husband have to go through this. It is so early on and I can only say from my own experience is I did not get all of it until about a year later. I mean I could not comprehend it all. I was back to work at 5 months but before I got home it was all I could do to grasp it all. It was so far above my head. I think it is a very good sign (see I am tired and I have no idea if that so the word I am thinking of) he can spell your name & knows who you are. My damage is in my reading and writing area & I can manage and feel very lucky. I think it is really positive that he can communicate so soon. Others will be here soon that had a closer story and may be able to help you more. Take care, Maryb

I am in the US. My SAH was missed the first time but it was read at I believe at the smaller hospital and later when I was not improving & transferred my neurosurgeon as he said STUDIED them and found it to be in a rare area of the brain. A stroke was picked up but they miss the SAH so I have no real idea other than the guy reading the results maybe just missed it. I find it inexcusable as well and make you lack trust but after I met my Neurosurgeon I was put right at ease. Good Luck Mary Ps I also read somewhere if scans are done too early they do not show a lot but that does not pertain to most of us!

Dawn, I dislike chocolate and sweets more now but could live on mac and cheese, saltines and something I cannot recall.........

Natural proteins, peanut butter without salt and sugar. I know itis bland! But I look at it as medicine not food! I will send a photo of the kind I buy, also almond butter is good. You can eat it with celery or an apple. I personally stay away from ...........can't think of what I was gonna say......hahahahahah Anyway if I had a strip of bacon or sausage I feel it for daysssssssssss! Good Grief bacon is like the devil but I love it! It messes up my body, i try to avoid lunch meat as well and make chicken breast or "real" meat to have for lunch. Yesterday I had left over salmon steak and left over fresh cooked spinach. Took nuts and dired blueberries and cranberries for a snack. I had a greek yogart ( with a few walnuts). Cereal for dinner. I had peanut butter on whole wheat brownberry bread for breakfast cut in my 1/4's. Sardines are gooda as well. Avocado's or any WHOLE FOOD. If it grows you can eat it. I will also sometime eat just some black beans. I will share that with Keith my summer to go salad but I can eat just them plain. It took awhile to get use to. Trader Joes has trout in a sardine can, love that! If I must go to McDonalds for whatever reason usually in desperation I order a egg mcmuffin the orgional with ham on it. I avoid dairy as it hates me. I look at food most of the time as what my body needs as a medicine until someone brings in good bakery donuts or makes a dessert. I am so good at home as i have not touched the carrot cake my friend made me but I fold at work so fast it is pitiful.

Hi Wade, I am a year and 1/2 out now. I am still surprised that I suddenly can "get something" that I was sure was lost forever. It is still VERY early on. Goodness I was still holding my head still with my hands and looking for socks for a half an hour at that point. Boy, lessons learned? You cannot rush your head as it if it is a muscle injury. It will not work that way, it has to heal on it's on and sometimes it is one step forward and 2 back. But it gets better. Those of us that are A personalities pretty much think we can WILL OURSELVES better by doing more. That's a mistake, it will take as long as it does. Rest heals and water hydrates. Over doing will set you back a few days. Which we all seem to deal with. Although I am sure some people or many folks return back to normal right away or soon. Good question we should ask our doctors. They just do not seem to have enough information on SAH or NASAH. I had an NASAH along with a stroke & I am not worried that it will happen it again as the chances is next to nil. By the end of the day I am not thinking as clear and start making mistakes so I need to recognized that and be more careful. Light, noise and movement ( leaves blowing etc) is a big deal for me, headaches lasted only 6 months and came back at 9 months but I was back to 34 hours a week at work. I need quite alone time in the dark by the end of my work day. But on the bright side last week I could tell how fast a car was coming before I pulled out!! I use to just wait for everyone to go by. Small town, USA. So just try not rush yourself to much, do not get discourage it will come. Good Luck and Welcome! Maryb

Vanessa, Glad your scan was ok. I have made several trips to dr. over migraines etc and my BP gets high at the same time. I just at this point need to be reassured. Take it easy if you can. How many days are you working. My head is dull if I work 2 in a row. Mary

Hi Vanessa, I had balance & dizziness hit me at my 1 year mark. I also swear something is wrong with my ears but they tell me different. I too was a bit freaked not that I was having another SAH (cause I am sure that will never happen) for me I was afraid my tumor grew. I was told it was the same but I can have it removed!! I was pretty sure I was told it will never be a problem and not to worry about it last year- when I saw my GP he said the letter from neurosurgeon indicated it was only slightly pushing into my cerebellum. I have no idea if that is why I get so dizzy now but it sometimes depends on the ground I am walking on, tiles, dirt, brick sidewalks, etc…I have to look where I am walking and I think when I am tired it is too much and makes me dizzy. Perhaps it is because I am doing more than I did 9 months ago or a month ago. Backsliding with my fibro has always been common but I was not prepared for this dizziness. It has gotten better and is not constant at least. Good Luck, mary

Dawn, I am still trying to wrap my head around the shopping thing but I hardly ever go down an isle I spend the time on the outter rim of store. Produce, meats ( YCUK GAG), dairy, peanut butter and bread last. I go down an isle if I need something on my list only. I tend to really stock pile the dried fruit and nuts -when I have bits and pieces left i make pumkin muffins and use all that up. I also put flax meal etc in most of my cooked meals and if I can throw fresh spinach in the dish I will.

I miss my 8 hour drive to visit my son. I am seariously thinking if I can work in a noisy office for 9 hours I can manage this now. I like to have that alone time and that one on one time when I get there. I tried at the 9-10 month mark and did not get past 2 1/2 hours of driving nad sleep for 3 once I got there I slept until we went somewhere. I was great at getting around his town well. I am thinking in a few months now that a 1 1/2 years have past to try this.

Well Said Lin, I get brain fog as part of my fibro always have the SAH & stroke were the icing on my cake! I also have high cholesterol and eat similar. I only have my bad number too high but there is no way possible to exercise enough to lower that. I also have to limit the amount of good fats as well as I love nuts and avcados etc....I was eating about a cup or more of walnuts a day. Small healthy snacks in a baggie help Dawn. I always leave home everyday with my salt and sugar free peanut butter on whole wheat bread sandwich. I eat it in 1/4's. In the US they sell a low carb pasta ( always wondered why I craved chocolate cake after spaghetti). Called "Dreamfield". I make a pumpkin pancake with walnuts. I can eat them cold. And I only drink 1 1/2 cups of coffee in the morning with no soda or pop except a rootbeer or ginger ale once in awhile. Good Luck,something here helps. maryb

Exactly.....it is the follow up for up to at least a year. AS no one knows how we will turn out. It is like there has been no studies on SAH surviors. You leave with no clue and a year later are pretty much clueless. I assume no one wants to put ideas in to your head of side effects but at least when we say what is going on acknowledge that it is real.

Just in case anyone in charge of this in the US is reading this I want to add..I give my cell phone number out to clients at least twice a week with a very ill animal that goes home and I am uncomfortable with the owner knowing what to do or what is happening. So at least a human nurse or someone with knowledge of brain injury could call and see how it is going and answer some questions. I am sure it would be benefical for the Neuro dept to knwo what kind of issues people are having. At the veterinary clinic we do follow up calls as a rountine with any ill animal etc.. So this is why I am am so confused with human medicine. Just needed to add that!! Thanks

Hi, My ears feel like i have an ear ache ( I feel as if my throat is sore too) and that the Dr should see something in there. That is my only ear issue. I have sensitive ears as well. Dawn my day was noisy and I found myself home early with a pounding headache all day. I am startled by noise and it is like super sonic hearing. No real panic attacks but i am on medications that may be takign care of it. When do they happen? I am not fearful of this happening again but I am trashed after a trip to the grocery store as it is so overwhelming to many of us here. I am almost at 15 month able to NOT just walk out with nothing. I feel like I have ptsd when I watch football or any sport that has hitting of the heads. I simply cannot process that they are banging heads together and on the ground. If they only knew what possibly was in store for them. It really freaks me out now. Neck has always hurt. It was my give away b4 I would get sick or if I was over tired. Still is, funny my bleed was on the back of my head? It is tender most of the time I find it senstive to lay it down. Good luck, I say you should see your GP at least and mention these things. I have found my GP KNOWS me and GETS me adn answers my questions better. I think neuros do not know the answers to many of this and they jsut pass over it and make us feel as if are alone and we are not.