MaryB

Congrats Kris, Well done!!

maryb

Jo,

I hope you have family and friends helping you out. Now is a time that you need them to step up and take care of you so you can rest and heal. It is not a time to push too hard or feel bad for being sick. It is what it is and somehow you will find a way to help that healing process. It is no ones fault and nothing you can do but give yourself time to heal. It heals on it's own time table. We cannot rush it but we can help it by resting and drinking our water.

I wish I could say more but you must take everyone’s help and not feel bad about it. It takes a toll on your healing process to worry as well, do not worry about not having the energy for your babies right now because the most important thing is you taking care of yourself.

It is so scary isn’t it when they don't tell you much. I think we should all band together and call their offices daily asking questions until they get they need to tell us more and reassure us better.

Maryb

Welcome Debbie,

I am going on 2 years now but every month is better. I thought that magic "3 months" was meaning I was going to be perfect like everyone else does but pretty sure it means the incision takes 3 months to heal. I really thought I was ‘special with extra healing & will power”!

I am lucky that so many people actually "Goggled" SAH up and really "got it" including my family and co workers. I am not afraid to do less than I feel I should. I give in to being tired and resting. I cheat making meals and it is ok. It is about me and I need /needed to take care of myself. It was /is sometimes like survival mode.

BTG has been a life saver for me and many others. A place that understands what you are feeling and going though. Most of us have not gotten answers to our questions by Doctors but we get strength, understanding and friendship here to get us though our SAH recovery.

I spent hours in the beginning reading the old threads which I found so helpful and asking questions when I needed help or just needed to talk.

MaryB

Daffodil,

Thank you for sharing such good information. It sounds like your accessment went well and the results are resonable.

Mary

When I stopped going to my last neurologist he had menitoned botox but never ever seemed to open my chart or care about anything other than my headache. I was so depressed about this. The one before him he never even sat down. Both made me feel like a "pill" was the answer & maybe it is true but at some point I want them to acknowledge everything I was saying as a whole. It makes me shake my head in disbelief that someone can prescibe medication but never ask some important questions? I wonder if they even have at the top of the chart like your conditions?

Maryb

Teecher,

Well GOOD for you! I totally agree with your new Doctor and it takes awhile to find the med combo that works. I did not do well on the neurontin/ gabapentin or other nerve fibro / diabetic drugs but Cymbalta was like heaven. It is expensive but since I cannot walk without a foot drop or grip anything without it I have to say well worth it.

I have said all along that this SAH crappola roles right into other neuro things so easily. Does not always matter how you got somewhere it is what you do when you get there.

Good luck. maryb

I had my NASAH Sept 2011 and my headaches did not go away until I was put on verapamil around 4 months ago. I had always had low blood pressure until about 6-9 months prior to NASAH. It was all over the place even afterwards. Now it is more stable - normal sometimes even low/normal. I only really get headaches now from over doing.

Last week I saw my GP and I tend to think there would be some answers about why etc and it was the first time I was told I need to accept that there will never be an answer to that question! I keep thinking I had so many issues leading up to the event like my hand writing would not stay on the line but go down a hill when writing in a chart. AND I was so exhausted. I was have been told by GP and neurologist I have / had chronic fatigue prior the nasah. But I really think I was stroking out at times. Or having a seizure? Once again as I asked the other day I was told I need to understand and that there was no answer. It does not matter why or how I got here today because it is all treated them same. I just think it is like reconstructing an accident scene but guess not.

At almost 2 years I have fatigue, short term memory loss and vision issues but adapt very well to all but fatigue as it started to hit by 9 am a few weeks back but now trying something new for that and I am awake and alert like "old Mary" for now. Having had fibro for over 20 years I had adapted my life style and feel it prepared me to adapt. Not that I was not shocked by the NASAH.

I must say one reason I cannot let it go was in 2009 I had a summer of falling and losing my grip. I had given myself 3 back eyes and I was sure something was really wrong so I went to the top Rheumatogist in Chicago and he said it was just the Fibro and I needed to be on Cymbalta. For me I just have had so many neuro issues that Fibro, CFS/ME and now a NASAH that is all is one big Catch 22 and I wish I would sort it out for my sanity but I guess I need to learn to let it go as there is no answers to many of the brain issues.

I did tell my GP the other day I thought or think I am more special and should be able to will myself over all this but he just LOL! Asked me how it that was working for me!

Maryb

I am so pleased that I was able to face a fear at work of having to deal with one of our Vet’s and her sick pet. I was the only one available Sunday at 7 am and I did great staying in a ZEN like mode & keeping her there with me. It was someone and a situation I was hoping to avoid at all cost. But I rose to the occasion and stayed in control.

I also have concord (not sure if that is the word) all aisle of the grocery store yesterday as my shopping list had only 4 items on it for the week! I also came home with a reasonable amount of groceries instead of my usual one bag because I shut down at some point.

Maryb

Wem,

I would say you are doing great! "Enjoying life in the slow lane" love that!

That pacing thing …….hum wonder if any Dr. has had to pace except our Vanessa?? I am so careful to not over do it by going places or doing too much "fun" stuff because I need to save my energy for work. I think that is where therapy comes into play. Seems a bit unfair to monitor your fun?

I have crashed this week as well and thought I was being so careful. It is a very bitter pill but you know I think I am getting better at swallowing it. For me I had a challenging Sunday at work where I had to buck up and be ZEN to do a few cases that I would have rather ran away screaming from. I felt so good for facing the dread I had built up in my mind but come Monday I was trashed by 10 am. I felt so good about accomplishing what I did on Sunday so I feel it is unfair that it ended up draining me.

All I can say is it does get better and I am amazed at going on 2 years I still am improving in areas I thought I could not improve it. You seem to have a handle on the big one of pacing. I keep going to my affirmations of "riding the waves"- "adjusting our sails" etc....trying to not dwell on the down times. It would be nice if the down time was only a day wouldn’t it??

Chin up darling you are getting there! Maryb

Great news Daffodil! My results were similar - except for word recognition and look how great I am doing!! :lol:Everything is much harder when tired. I had/have a learning disability so it has exaggerated that but with all the adjustments I have had to already make in my life I must say this SAH thing has ended up just being another.

I think it is riding the waves, adjusting your sails etc.. life has been that way for me and accepting that makes it much easier. Not that there are not bumps in that road and days of feeling angry etc. But in anyones life it is how you approach the challenges.

I see people that have such minor things going on and it is hard for me not to kick them in the pants. Or worse yet people that have faced major life and death issues and it has not changed their perspective and they look at it as "dodging the bullet".

Good luck and wishing you well! I know you are up for the next wave! Maryb

Hi Kerry, Welcome to BTG. Sounds like you are doing everything right. I am almost 2 years out from a bleed from unknown resaon as well. I was in and out of the hospital for about 10 days or something like that. I too never cried - or since. I was numb and had no idea how serious any of this was and thought I would be back to normal in a few weeks.

Personally I still do not understand the events and funny how it took me almost a year or more before I think I even had the right questions to ask! Which I have not really asked yet!

Get well soon, take care, maryb

Thank you Sarah, I was not really moaning or ranting ok maybe it was stating some facts about health insurance here. It was not my SAH that put me in the position we are in with me covering the family it was my husband having kidney cancer and heart surgery in the past 5 years that makes it impossible to get coverage privately.

Funny they do not even get to asking too many questions about me! He is flat denied, I can get a policy for a billion dollars! So the $9,500 out of my pocket for coverage is bad enough through work and the $5,000. each deductable keeps us with thousands of dollars in debt every years but I know we would have lost everything with 3 major illnesses between us the past 5 years if we had no insurance. I find it a moral outrage.

Yes, I am for thankful for a job even if it sucks the life out of me most days. It has been a blessing I see now for some of my skills. It is the mental overload that is hard but in the end it has to be worth it. I am hoping with Obama Care ( which most everyone I know HATES but knows nothing about) will help in the end that I can work less hours and not have the pre exsiting illnesses an issue. Once again for such a "God Loving" nation it seems a no brainer!! Everyone treated equal:lol:. I know it will not be perfect but nor is what we have now either.

Good Idea Karen,

I worked 9 1/2 hour day and was training 2 gals today which went well for me as it takes all my patience to keep my head straight with what I am suppose to be doing!! Most days I can get frazzled when having to explain things but the young gals I am training "get me and my brain issues" & get it when it is too busy to explain so it is working well.

One year ago I was only able to drive 2 hours and last week I drove 8 hours and 491 miles alone to visit my son and back 4 days later). Which has been a big goal for me as I love my alone time in the car. I did it in complete silence which helped me concentrate and it is easier on my brain. It was so wonderful even if all we did was have dinner and chat while I was there. More than a wee bit of normal for me.

Another thing with my week off my blood pressure was 104/83 which is what it was a year before SAH & strokes.

I got my joy of gardening back this summer - a big thanks to Carl last summer he gave me a push to get my wood fence painted which has made a great background for my plants & planters. Thank you Carl.

Pretty sure I have had a darn tootin great week!!

Maryb

PS.

Sorry one of the good things about returning back to work for me was that I can do my job. Those are the skills that came back to me first. I am still number one at doing it although in the afternoon I ask more questions. I am certain many of my co workers would not have been able to do what I do - because they can't without a head injury. Not to be mean but geez! Difference in personality I suppose. That is one of the things annoying is you are doing it with a not so good head and it is so much more work.

I co worker just got back from Holland and she said it was so exhausting to listen all the time to people talk to understand what they were saying. LOL I said welcome to my world. There are so many levels to go get through that people on the outside have no idea what it takes. I am sure I am going to break something by falling off a curb in the future as I must watch my feet when I walk and those curbs sneak up on me.

I wonder if I did not return to work if I could get back my cooking and grocery shopping skills? Or enjoy the grocery stores as I once did - looking at all the different items and making meal plans?

Maryb

TIA? Or Back to Work??

When we are ill in the US we have either a private short term disability private policy if you work- mine was 3 months. The problem is as much as I have chewed on David and myself to get a long term plan for being ill and having to work after a TIA, SAh and continued poor health is you cannot give up your health insurance policy. I wonder who supports the household when the ill person quits their job. Who has their health coverage? While it would be ideal to leave your job you have to find one less stressful with health coverage there really is not another choice.

I have been off work for a week and my blood pressure is 104/63! MY goodness I have not had that BP since 9 months before my SAH. I know the stress of working is the main cause of most of mine and David problems here. Life would be so much better if we could just quit working or work part time until noon every day. I feel I would better serve as a volunteer etc... But we will not be able to have health insurance =ie no one would give us a private policy. I have tried that is why I am the carrier in our household. Through working full time your employer offers a policy. If you have had a serious illness forget it they will not cover you unless through a job where they have to.

Yes, there are ways to maneuver around your job and illnesses in my case but most do not have that flexibility with their employers. Yes, one has to know how important weighing health against wealth but it is not wealth in the US. Before I left for my vacation I almost walked out 3 times one day as I could not handle the bologna of the day. It was pushing me over the top & I could not deal with that kind of on top of doing my fast pace job.

Nothing I wish for more than an easy answer to this catch 22. Yes, DAVID you need to get your blood pressure under better control as it is STILL too high.

Just a little rant not directed at anyone just to clear up that it is not so easy to quit your job in the US if you are the insurance carrier in your household unless you plan on losing everything. AND I sometimes think that may be the answer. You have to be unemployeed and unable to work to apply for diabiltiy that make take years to get if ever.

Maryb

Sorry David, think the key is doing too much in afternoon. I need a rest in afternoon or I cannot do anything after 5:00. I pretty much get a WAM around noonish, if I do not listen to my body it only gets worse. Only way it works for me.

Maryb

I would not have any contact with my neurosurgeon if it were not for my brain tumor! I saw him montly for 3-4 months and now yearly. I have debated if I should get my last scan in December as it cost me about $3500 out of my pocket.

Saw 2 different neurologist and I ended up hating them both - they could not get out of the room fast enough and never opened my chart. Really a waste of time and money. Therapy worth the money big time as is my understanding GP. Although to one thing the last neurologist got right was the Channel Blocker as it controls my wacko blood pressure and headaches really well.

Personally I think we can change all this in the future. I am hoping someone other than our darling Karen will come a long and invite us into their circle. I personally beleive they do not know what to tell us so they say nothing. They do not want to lean us one way or another.

I have thought returning to work so early was a big mistake but now I think it is so interesting as that is the one thing I do best. I still stand in my house not knowing what to do but at work I have a focus. Not saying it is not really tough on my brain to work. Interesting though that area of working and making decisions on what vacccinations are next, what will the dr. need before she comes in rooms ( urine or blood etc), timing my 2 exam rooms and making sure waiting room does not get backed up etc... I still am number 1 at my job but I cannot spell, find words or reconize cases or people?

The brain is amazing and know you will continue to get better and better even after years. Maryb

That said Penny, I am thinking my is part of CDs/ME.

I have had a chronic sore throat for years. Some medications and foods make it worse. I sometimes feel like it is so swollen I cannot swallow. Comes and goes. Don't know why.

Hi Daff,

I had these test done a while back. Maybe at the 9 month mark or something? I cannot recall I how I did. I do have memory loss so that may be why I do not recall. I did better than I thought I would and was a bit poor in some areas but overall OK? I do however think it would be interesting now to do the test again after working and being exhausted.

I was thinking on my way home from work tonight that I cannot even recall people /clients that have been coming there for many years and it is disturbing to me. Worst yet when I see them a few days later and they pick up the conversation where they left off it is just disturbing as my mind is going around the block trying to figure out who they are and what they are talking about. This is my daily occurance at work.

So I think it is either I am better but am doing more & become more forgetful or I am worse? LOL? I cannot tell. It would be interesting to do that test after a long day.

I could not name animals either, count back from 100 or recall the 4 things that he said to "not forget".

Mary

Oh my goodness I feel so cheated I wish I had laughing fit too!

So glad to hear you are coming along so well. I mean really!! My what an amazing story. You must meet WIN she sings all the time as well. Funny in a way.

Glad to hear from you and keep stopping by!

Maryb

Many years ago my husband said "calm down" to me, I could of punch him in the face. I would have that same instinct if someone told it was 'time to get better now". NOT that I want you to punch your wife but it would really just make me crazy mad to even suggest I was not fighting as hard as I can.

Can't tell what to do with that one, sorry David.

Maryb

Vanessa, while it is great to hear from you I am sorry you are having mojo issues. I understand what you are saying I think. I feel I have made improvements coming up to my 2nd year anniversary but my improvements are trumped by my lack of energy - my brain can only do so much and if I am tired or had an even minor event it throws me for a loop. It is not that the event has cause panic or anything just one more thing that takes my energy away with for something that was not "planned" seems to be harder. Maybe before I did not care so I did not have to deal with it but now I do and it tosses me back a few days.

My body is as weak as my mind someday and I cannot even say it is a pacing issue. I had a clogged sink yesterday, worked on that, plumber came, it was my day off. Was planning on making chicken in Crockpot, printed recipe off computer and it was for something that had no chicken or Crockpot as I lost my train of thought while I was looking at recipes. I was in the store shopping for food that had ingredients for something entirely different than I thought I was in the store shopping for.

I also this week was checking a boarder with thunderstorm medications (I work for at veterinarian’s office). I was such an idiot that I was talking to these people saying "Oh we have another dog Teddy with storm anxiety as well etc...And when I saw the dog’s last name and the dog I was like "Oh this is THAT Teddy!” I felt stupid as I have worked there 17 years and this dog is there almost every weekend but I did not recognize the owners for some reason. I was completely blank. It is like sometimes it takes me 5 minutes before it all clicks and I get it as before everything was automatic.

I do however think I have improved in areas recently but the improvements cannot match my poor energy & concentration level. Maybe that will come next. I wish someone in Neurology could experience this so they understand what we are talking about. It is as interesting medically to me as it is annoying personally. Like when I took that second dose of Ritalin after a year of not being able to cook I suddenly had a light bulb moment when something clicked so profoundly that I was like “Hey this is fascinating”. I think of the 60’s and everyone taking acid trips that excitement and enlightenment but all I got was the ability to go in the kitchen and multi task and make a meal again. But it was that kind of a giant CLICK that happened in my brain to understand something completely different than I had for a year. Suddenly it all came back. But that was the end of my Ritalin break through.

I find I do really well if I eat a lot of chocolate. I mean it, if I am doing poorly at work I load up on candy to get a buzz. It is so not good for my fibro but it get me through a day and makes me feel like I use to. Actually my co workers like me on my candy “buzz”.

Vanessa- 10 months is nothing when it comes to recovery. I think you are doing great just being able to work 5 days. And the amount of concentration and the memory you use daily would set me back a million years. Are you able to speak with co workers or friends or do you feel that they cannot really understand what you are talking about?

Really at 10 months most are not even working so kudos to you for that. I get your disappointment with this just is not good enough right now. Sorry you feel poorly, mary

Wanted to add, although my memory seems worse at times. Like really bad! I think it is also because I am improving but of course fatigue sets in and it seems like I am worse. I have says I think I must sound like a total idiot to people at work. I know I sound crazy, I can hear myself talk.

Yesterday I was looking up a chicken slow cooker recipe and later I was at the store having to pick up a few groceries and I looked the recipe and it had no chicken in it and it was not a slow cooker recipe!! It was a really good meal but I have no idea when I "blacked out" and ended up with this other totally different recipe. Typical kind of things I do when I am tired. I was thrown for a loop when kitchen sink was backed up and it set my whole day tumbling down hill. Funny how those little things make such a huge difference now.