MaryB

Bravo! Stephanie, I found that certain people just drain me and I have nothign to give them. I have kept a safe distance from those people for sometime now! Good for you knowing what is important. MaryB

I understand David. I am in a small company as well. I share my job with 3 others and I do weekends by myself. I cannot work the amount of hours I put in. How sad is that now that my bosses mother has died last week I know dread the normal business hours again. I see my neurologist tomorrow for my check up anyway so I need to bring this up. I just need to be home piddling around the house and work when I feel like it. WHen I do work it is very difficult if not impossible to do my home chores. I however realize I am getting better at the juggling or is it that boss was not working full time last 2 months? I do not understand your leg and foot pain. Very odd. I hope that they find the source for that soon. Someone is missing something. Have you done any reserch on your own? Did family members have any leg blockage? Elavil never controlled all my fibro pain prior to SAH so I could not imagine it controlling it now. But we are al built different. I only feel "wonderful" when I am in a pool with coolish water. Good luck mr. Do you like your family Doctor? I am sure you won't burst into tears when he walks in like I did but it also I think showed him how desperate I was & how much I needed him. I need to get my notes ready for appt tomorrow so I dont come home missing my "BIG opportunity to ask questions! Check in with us tomorrow. I hope you have a good day! Mary

Thanks SL & D, I am all better now. Ok, I am just done whining. I was just so surprised at my tears when I saw my GP. I just did not expect that but he has always been honest with me and prior to SAH/ stoke / tumor he use to say......"Please have an easy problem today Mary". I know I am complicated but I use to laugh at that. I am pretty sure his sister has either Lupus or MS, I cannot recall which one and his father use to be one of our Doctors. I just think seeing someone who has already treated me honestly and truthfully was a gift today that I needed as I just needed "it" all to be validated for what I already knew in my heart. He had a look on his face like that stone face dr that looks at you and says something out of his BUTT but he knew could not pull that one on me. He was really sweet when he asked if I really wanted to know what he thought or not. I could tell it made him sad. It was just so comforting to see someone who knows me without having to explain the whole darn story & not give me any BS. I am tough. My problem with anti inflams and pain medication is that it tears up my stomach. I have a codiene allergy so there is not much on the market that helps. I get by ok. I took anti inflam for so many years that it may be one of the reasons I have come up with some other autoimmunine diseases. If something tears up your gut you don't wait until it tears up the tissue in your mouth and throat. Thats the catch 22 of my life. Good thing is I have been on muscle relaxters and they work well but knock me out. I just now b4 this note was reading about their effectiveness with pain but I can't recall what it all said!! Just know it was an article on pain and proven treatments that work. I am also back to sleeping 3 or more hours a day. Errrrrrr. MaryB

Since this is back to work thread I will unload here. I normally never cry NEVER! Today I got in to see my family Dr. as he has taken over 3 Dr.s practices and it impossible to get an appt except with nurse. My hip has been killing me and waking me up at night and since I am allergic to my pain medication it doubly sucks. So he walks into the room and I start to cry. I got myself together but I asked him if this is as good as I am going to be, "DO you want my honest answer?" Me: yes Dr. "Probably, but you are doing & have done everything possible between the fibro and brain". Me "SO did I also have a stroke with the SAH?" Dr. "yes, in the occipital lobe and that damage is permanent". I showed him my crooked fingers and asked if that is going to be arthritis as well and he said "Sure looks like it". I think he was going to hug me when he left but I stuck out my hand instead. I also told him I had my share of this kind of . http://library.thinkquest.org/19910/data/occipital_lobe.htm Ok that makes perfect sense to me. I also told him it takes everything and more for me to go to work and pay for my health insurance and I cannot make it like this until I retire. I got giant cortisone shot in my poor right hip and that DOES not even hurt when given anymore. What the heck? I remember when I thought those were painful; those aren’t even bug bites to me now. I get so tired of fighting the fight - I am not suicidal or anything just tired of fighting to have a decent life. I KNOW I AM LUCKY, very lucky I get all that but I am just tired of thinking about what I am ding at all times as well as physically having pain in my body at all times. I would make a deal for 5 good days a month. Tuesday I see my neurologist for a follow up. Ok, I am done complaining. Going to take a nap b4 the viewing/ showing/ wake of my bosses mom this evening. Headache is coming on. Thanks for having a place for me to complain. Mary

I was raised work always came first but it now an dhas for some years left no fun left for other things I use to enjoy as the hard work took all I had. I wish I could just win some $.

Kris, My strong willed personality Suppotive family, friends and co workers. BTG My own determination to understand HOW the brain functions, being an investigator to how MY own situation is affected by the "white" areas along with the additional issues for mind & body. Having already having limits on my health prepared me for this but it also ALL seems unfair at times but I do not let that feeling stay very long as I recognize how very lucky I am to not be worse off. Giving myself permission to not be 100% - thats a big one to let go of. But I am not who I want to be and I need to believe everythign happens for a reason and my reason may be to slow down. Slow down and enjoy the life I do have. Maybe it being more simple is a blessing.

Well said Michelle, Sandi, That sounds like it will really be beneficial to your recovery. I hope it all goes well and you find a nice soft place to land where you can get back to a new normal. However the background noise thing sounds dreadful!!! maryb

I am so glad you responded David, I was so worried about you all day! As far as anti D's go ........I have been on a boat load of different ones over the past 15 years. At first you think of yourself as weak, when I first had to take them was for my fibro and I was like "I'm painful not sick in the head". But later with education I understood more about the way they work and pain etc. nerve connectors going out of whack. .... bla bla bla anyway they do help. But sometimes they need to be switched to find the right one. I seem to run out of their usefulness after a few years and must switch. A blow to our brains has been massive for each of us. Everyday I wish I could do more. This is not the life I intended to have, this is not the life I dreamed of. I thought I would still be going a 100 miles per hour. I have not had enough spoons to visit out of town family for years . Driving north of Chicago to see my nieces is something I expected to do all the time. No, this is not the life I thought I would be having. I feel badly that it is this way, I wonder if I collected all the credit cards offers I get in the mail and be totally irresponable, if I could quit my job and charge up a ton of bills and then file bankruptcy if I could have a good year of doing what I want instead of what I need to do or have to do. This is a family here. Maryb

David, I so feel for you. I understand and wish there were easy answers. Somethings I have learned and it is not a positive but keeps me sain is that when I am having good days to stop thinking I am cured. I have done that for over 15 years and now with the SAH I won't allow myself to go down that road of disapointment again when I crash. YOU need to see your GP and do it now. You need change your medication possibly, that is common. I have not worked at all yet this week and it is so nice to take my 3 hour nap. I just now was able to do some personal phone calls etc that I havent done in years, lucky they werent home! It is so hard to fight the fight but you must do what you can. We all love and care about you so please jsut call your dr today and tell the nurse why you need an appt. Be honest with yourself and others. I have no problem doing so and it makes me feel better saying "I can't do that right now". People are sick of hearing me say that but we all know where we are at. I carry the %^$(&%#^ing insurance in our family and I feel trapped by it but for now I just am honest and put one foot in front of another everyday....tomorrow may be better..... GIANT BEAR HUG! maryb

Sorry Sandi, I know how hard that must be. I have a love / hate thing with my job and it is too demanding for me and I certainly do not know how to not work so hard. It may just be the best solution for you. Tell Peter he is right. Mary

I think that is part of a select group of screening test they do for certain neuro diseases. I have fibro and get screen regularly/routinely for lupus, MS & RA. Good lUCk , mary

LisaC, You are so early in your recovery to judge if this will last. I have my days and I think I have lost desire but I think I am just too fatigued to do those things right now. Chin up it gets better! I can say every month I get better. I wish I had journal it early on when I felt bad and could look back at it now. It woudl interesting and cathartic to read. mary

Sandi & All of you, I am still messing up all the time and I do find when you tell someone why it sheds a light on them being more tolerant of me and others. I hope when I have told a teller or cashier etc that they stop and think the next time someone is having some difficultly. I always hope so at least. At work if we know someone has an issue or whatever going on or even the elderly we always treat them with more patience and such. As everyone can relate to someone they know and love and UNDERSTAND what they may be feeling. We will even hold up te line to walk out an older person with their pet to their car even if people are waiting. I always think things like 1 out of 4 woman will get breast cancer and look at my co workers and see us all differently. SO it really does not matter what is going on it matters that we treat people better with more understanding. I am no different than my BIL in radiation with throat cancer right now, or my dear friend who went through 3 rounds of chemo 2 summer ago and has to have her 4th knee operation this summer or my neighbor with a horrible rare disfiguring tumor disease gene she passed to her kids and they all have skin cancers they have to attend to all the time. We all have some sort of baggage. I am however not in a happy place right now and I need to learn to turn the switch off in my brain but I do feel so useless and wasteing my days by napping or resting as so much I want to do instead of resting,. I just need to find a way to do them with my head laying down. maryb

"Switch thoughts", thank you, I have forgotten how to stop listening to that little destructive voice in my head. I "switched thoughts" many times in my life while quittting smoking etc but sometimes I get stuck in "I can't beleive these headaches are back" thoughts. I must remember to be thankful everyday for all the things I CAN do & from that I can help others by example. Thanks Momo, I needed that! Mary

Kris, Yes, I am angry. Having Fibromyslaia prepared me for this but I tell you if it is not one thing kicking me in my butt it's the other thing. Most days I am ok and can accept my limits but this weekend I am angry as I want to get so many things done ..............gardening, cleaning, etc. I want to pull ouot my beads but know I will feel overwhelmed if I did. etc.................... I would like 7 days a month of feeling great. That is my deal! I HATE that I cannot make a decison anymore, I can't decide what to eat, cook, wear, buy, watch etc.....all my decisiveness is gone.

I can manage my panic and anxiety issues pretty well as not to panic but I have had lots of practice. But I am still overwhelmed in grocery stores or shopping or being in a crowded situations. If it were up to me I would never shop again. I use to enjoy it but it is so tiring and overwhelming. I find making a list and focusing solely on my list helps. Breathing exercises help as does playing games on my cell phone to lessen my stress when I am waiting. Right now my husband is listening to the TV loud as hte mircowave is on adn such so it is really hard for me to concentrate on writing my thoughts!!!!!!! Good lUck Kerry, it gets much easier. The fear of it happening again does not bother me anymore but I stilll cannot wrap my head around the whole experience yet. MaryB

Lin & Sandi ~ You both are so helpful and wise. I cannot tell you how much I hang onto your words. I get a montly call from Blue Cross our insurance agency on some kind of wellness check. It is always nice to have that someone there that seems to be truly interested in helping from the outside looking in but it never replaces the support I get here. Although I am off the next 2 days I have to question how far do I or can I push myself between the SAH & fibro. I often feel it dose not matter if I pace myself on good days because I NEED to get stuff done and it is simple as that and it feels so good to the soul for being able to accomplish much in a day. Can you stop by and push me off this chair and point me in the right direction?

Mags, I am almost 8 months post SAH and I can only once in awhile listen to music in the car on low. I cannot look away from driving while driving the car either. I love loud rock concerts .........I will miss that very much. Can't listen to Zepplin on low either, doesnt sound right. Nor can i multi task! So thats where I am at. No to the hot head. I was following my boss to her car today and she was handling me something while we were walking I become an idiot like I can't walk, talk and be handed something. I have gotten so use to wathcing where I am walking so not to trip that adding passing the baton was too much! David, It does get much easier and sometimes you get a bonus week of feelgin pretty darn normal! I just had a good 10 days and now I am crashing on the sofa as often as I can. Today on my lunch hour I actually got under the covers in our bed with my little Henri dog and fell asleep for 30 minutes. If I did not wake up I woudl not of cared. I am blessed that my co workers get it & we were over staffed today. Now for sofa time - to hell with dinner tonight. LOL

Hello Lynsey, I am so sorry to hear how you are feeling. I have fibromylgsia, along with a host of secondary autoimmunie issues with it. I am not sure exactly about what ME is as it seems to be an British term for something like Chronic Fatigue? I have had a great deal of luck with anti depressants and seratonin uptake inhibitors. I do have to switch them every few years. I am currently on Cymbalta. I have had fibro for about 16 years and the exhaustion is here today as I have spent the day in bed but I had a really big week. But I am so much better on it. I think everyone with any brain injury should be on some sort of these meds. because of the nature of a brain illness or injury - the disruption of blow flow and the similar affects of fatigue, pain, muscle weakness, numbness, tiredness, depression etc...... I do not feel depressed but I have had a lack of emotion for some time. I do get some happiness but never giddy or delight and I never cry or such. I am so even tempered now. Rather dull. Please take care and I am glad you are seeing your neurologist later this month. Maryb

MRI is painless, I rather enjoy the relaxing part of just laying there. It is noisy but it does not bother me, they give out ear plugs. My first one many ears ago I did not know I was clastrophobic but I was able to talked myself down and was fine. I did my Lamze breathing or yoga breathes. I now request a towel over my eyes. I have no idea how many I have had but it has been at least 7 or 8. Good Luck.

Good luck Claire ~ Go ahead and scream.. you deserve te right to scream. DO you have help at home? Someone with you?

Is there anyway to see a different Dr.? I am not sure how your medical community works but that guy is a jerk. I however complained all last summer to no avail about not feeling well and extreme fatigue, confusion etc......and I live in the States where I can choose a Doctor. It is just not right. Sorry for your waste of time but there has to be a way to get in the system and be seen by someone else.

Good one Sandi!! It would drive me crazy. I cannot imagine anything like that. I would have to really have a heart to heart with my spouse on what are "we" going to do about this. I cannot imagine 6 hours of my precious Sunday spent this way- my husband would be worse about it than anyone. I am afraid having to be blunt may be the last resort and may be the only one that works. You cannot insult an idiot and I have been EVEN more BLUNT since my SAH. I give energy sucking clients who really want a magic pill for their pets or crazy people on the phone 2 choices? DO you want to make an appt or do what I told you to do? I hung up on a crazy lady on Friday that called at 4:45 to see if we close at 5:00 which she knew we did and she needed pick up her cat bla bla bla. I said I could not wait past 5:00 for her (again).She kept talking and I said you better hurry up and get here. It was like "I don;t care !! Hang up the phone and get into your car you only live 7 minutes away!!!!!" Finally I said "You bettter hurry up, bye and hung up". She was looking for me when she came. She is rude and cannot be insulted as far as I am concerned. People like that just don't even think about others being put out. I don't think I could stand it. We do not like it when our sons come home and sleep on OUR sofa on the weekends either! If I need to lay down I want to lay on the sofa with quiet. I woudl wlak around holding my hands on my ears like that Vincent Van GOgh painting the SCREAM. I do that at work with one of the loud ( no life except work) Dr.'s. while i say "Shhhhhhhhhhhhhhh". Sorry no help there!

Hi Cath, I am going on 8 months post SAH. We all are special and unique in our own way before and after SAH. It all depends on which part of your brain is affected as well. I am dissappointed Dr.s did not tell me more as I had not a clue I would be facing this much recovery. I truly thought I would be back to work in a few weeks. No one bothered to tell me 3 months for the brain to heal from the trauma alone- that is wound healing as in the "wound" not mental and physical recovery. I just recently had a big step forward..........I just started to keep a journal and I am not that great about writing in it. BUT I wish I would of started it earlier on as suggested so I would have a reference to my recovery. It would be so helpful at Dr. appointments etc as well. Welcome to BTG, it has been truly the best thing for me. I would rate it right above water areobics! Not to say WA was not hard for me in the beginning but it is a God send now!! I wonder now looking back at it if that is why I had my big step forward??? HUM? I depend on these "friends" I have made in BTG to keep me in the game and positive. I really mean that as no one really understands how exhausting it is to THINK about your foot placement with each step you take or with memory issues. I am thankful to alive and thankful I found this website. MaryB

Claire, On a MRI W/WO Contrast 1 of the 4 IMPRESSIONS reads : "Nonspecific T2 hyperintense foci ( an indication of a bright region of scan) within the periventricular ( old age, stroke, age related disorder) white matter; these are most likely the result of a chronic microvascular ischemic ( sub type of stroke decreased blood supply) changes. Demyelinating ( multiple sclerosis) process could appear simiarly, and and clinicial correlation is needed in this regard". So when I read my reports I have to break down all the words and think......was this going on when I was ill several years ago and I went on gabepentin and then cymbalta? MS has always been on the list of diseases to rule out with my health. It makes me wonder. I do not think they want to share everything with us for a reason. We want everything explained, as they would as well. I am not sure but I think most of maybe have several things going on? It woud be interesting to know if that is true. Sorry I forgot what my point was for writing this........ be back when I remember.