MaryB

I saw a Neuro-ophthamologist maybe 6 months or less after I had the head thing happen. I lost some vision. I got new glasses at one year. I went to my normal eye dr for those. The Neuro O was not prescribng glasses only disease etc..

Hi Davey Boy, 99 Days until Obama Care will in place for pre existing illnesses. I am sure our friends over the pond have no idea how insurance is a nightmare here. I know you for one are not very hopeful for this new insurance protocol but I for one am. I checked private insurance a few weeks ago and the rates were what I am paying) close to $10,000 a year with $5,000 each deductable) but they were quotes with no illnesses......AUGHHHHHHH. When they ask if anyone in the family has been in the hospital during the past 10 years, you may as well hang up...Dave’s Kidney cancer and heart surgery and that is not even me talking about having a brain tumor, SAH etc... This insurance system keeps us poor and in a place of hopelessness when you are ill. It is so tough, there is no in between it is either full time or no insurance. I think it is a moral issue. I did not really get the pressure my husband who had the coverage until 3 years ago felt like. I have pressure to keep it and I just do not think anyone can understand that unless you live here and have been ill. Not even than if they never have lost coverage due to a buyout of company or someething and them not offering it. Once you try to get a policy and are turned down that is hopeless and wrong on so many levels. Keep that BP in place. I should smack you for letting it be so high and not getting that taken care of...........although on my last miserable visit with my fired Neurologist I said the channel blocker at the higher dose stopped my headaches almost completely and also controlled my BP that has been all over the place for a little over 2 years. He said he was only interested in the headaches as that are what "he" was treating. REALLY?? Mary bangs her head on table here. Ok buddy boy! Sorry my Chicago Blackhawks are the Stanley Cup Champs!!!! OMG did you watch the Cup finals??? Gotta run now ( head killing me - clogged pipes today and I have worked too hard unclogging them). Take care. Marybewatchingyou. PS what is your BP now?

I have thought about you all night and all you have gone through. I hope you find some comforting advice here. You have gone through so much I just think anyone would have a hard time. Just know you are not alone in here. Maryb

Hi It makes perfect sense to me. AND all you have had to deal with would have put someone with less strength in a mental ward! I am amazed by these women with children at home. I know I am older but holy cow I have no idea how I could be reasonable for anyone but myself but I am sure we do what we have to do. Lucky I have a great husband that just lets me be. Have you had any therapy? Where do you live? I felt so much better after therapy. I had to pay for it out of my pocket but it was worth every penny of it to feel a sense of sanity. I felt it gave me the validation for my feelings that I was not getting anywhere but here in BTG. Yet my friends and family are supportive I think I needed to hear it for myself that I was doing great for where I had been and where I was at. I think because I have a great GP it helps me but the 2 neurologist I have seen should have opened my chart or paid me for showing up. They really made me feel worse, much worse. Really can they give you 30 minutes of listening? Or at least a questioner to fill out and they read?? I find I am still myself but better in ways but I think back as being a young mother and my doubts I had- I think you have been through so much that a therapist could really help sort out what you need to do next. It helped me set some small goals and not look at the overwhelming giant picture but the smaller one for right now. Good luck sweetie, I hope you find some answers here. Look at previous links/ post as well. Maryb

Hi, I am at almost 2 years I would say yes, I have changed as a person- for the better. Am I 100% pleased with all the changes? No- could of became thin, younger, better memory and not so fatigued, oh and my hair turned to brown again. Do I ever forget I am where I am now? No, is it because I am older and wiser? Or that I have to watch where my feet are when I walk and take extra care when driving, etc.. I cannot just wing stuff like I use to. I am always aware of what I am doing it seems. It may be combined with my other conditions I have weakened in many ways. Nothing one can do about change except accept & embrace where you are and move on. We all are so different and have different damage, different health issues etc as well as age. I wish I had more energy & memory but I still have hoped that part will get better. I pride myself in finding ways to compensate for my short comings but sometimes it is a struggle. I use all my super “powers” at work. You know if you were so sick you do not think you can get out of bed but if the house is on fire you would be able to run? I think work does that for me as today I had to help trim nails on a 90# pit bull and it took 3 of us 20 minutes. I also had to get a wild dog into a crate for the first time and think where does this strength come from? I thought it would be a bad day as it hurt my hands to squeeze the toothpaste this morning!! I certainly know why my shoulder will be hurting tomorrow unless I forget what I did today! Maryb

HI, I live in the US but I think Michelle has spoken before on travel insurance. I do not know when she will be back on but you may want to check previous posts? Sorry I cannot be of more help. Maryb

Congrats SarahK67, Well done, I think if you do not have a fighter instinct this kind of event would be a reason to give up. I say that as I think surviving a SAH is not for wimps for sure. It takes great strength and determination. I am glad to hear you are doing so well. Love the dog photo! Maryb

My husband made me text him every hour. I say be sure to have your phone and text say every 30 mintues? I started with doing ok than it was Thumbs up onto Ok..K

Hi, Just received a TEXT from Davey, "Had mini stroke on Tuesday, no brain damage. Some heart damage. Going home tomorrow." Let's hope they help him and give him some relief now for his on going pain. I have no idea if they did a heart work up. Maryb

It is noon here in US in our corner of the world and I have not heard anymore from David. Just keeping you updated. maryb

David texted me just now ( 7 am here) he is in the hospital and see neuro today. Yesterday afternoon when he went back to work he said he was not feeling well again and I gave him some ________. Hopefully he got to hospital THAT time and they kept him. Will let you know if I hear any thing. Mary

Ohhhhhhh yea..I have daveys phone number and I am texting him right now!

David, GO to the hospital and text us from there! Really do we need to be forced out of a job, our ability to walk & talk or worse yet life? I want you to go to the hospital, you are being irrational. Life will take care of itself somehow. REALLY it will if you lose you job and health coverage - than you go on disability or find an easier job. WE will retire with nothing anyway! Don't kill yourself over this.mary

Never had that happen but I would call my doctor to tell them. Davey do you check your BP at home? Gosh I have asked that of everyone the past week. How long did it last and where were you? Yesterday I had cartoid artery on my left side pulse so hard I could see it for about 10-15 seconds. I did not call doctor either, never had that before and it was freaky. BUt my bp was only like 106/80 the lowest it has been in years since SAH. If it happens will call dr. You have such a history of your BP going sky high I really think you should as least give a call. What did it feel like? Maryb

Boy I understand that!! I was just was talking ( texting ) Michelle about her needing to take headache meds before head was unbearable. I asked her if she takes BP when head hurts etc.... so she went and took her headache pills. I lliterally a few minutes later had a pulsating vein in my neck that I could see pulsating up and down. I was like "What the heck is that about??!!". She than said why don't you take your blood pressure???? Duh! I tell you it takes a village of us to get it right! XO mary

You are not a whiner..........you may be on the bottom of the list of Whiners! Glad all checked out ok. I just asked someone else if they check their BP at home? I have had to track mine for sometime and I was shocked how high it was when I was having pain. XOXXO marybtheretoholdyourhandandpumpthemachineforyou!

Elainej, You know I still feel that way about some that have been here for years and years. I feel I cannot jump in as I cannot keep their history straight in my head. I really love it when member post on the bottom what their date of SAH was so I can remind myself how long out they are. MY dream is for a rich person to fly us all to the same vacation location for a week so we can have a vacation/conference. Would that not be so cool to put a face, personality with their story?? Maybe a brain research group could do that for us! I have told a few or many that my Fibromyalgia Network has over 100,000 followers on Facebook and has a magazine they send out to members but 20-25 years ago it started so small now it has grown into a wonderful resource of information. It was back when fibro was thought to be all in your head and not doctor had an answer for you. But I have a dream someday all of us SAH'ers will be the beginning of something small that grows into a really well respected place of knowledge. In the next 10-20 years brave doctors will acknowledge our struggles and have answers or at least ways to cope. I must add on my last visit with my neurologist ( who never opened my chart) – who knew I had fibro and CFS/ME said to me when I asked why I get so exhausted for a week after a day full of activities? “Maybe you have CFS? I was like “yes, I do and fibro, Do you believe in fibro?” and he said “ I think a lot of people try to use it to get disability”. I was so dumbfounded. He was only focused on treating my headaches- and said so. Like I said that was my last visit with him. Our day will come! MAryb

Kris, although I do not ever cry, I become painful head to toe, cannot think, or do anything and it last a week more or less. It is often after doing something "fun" or over doing it. I can have them for no reason. I am similar to a sleeping zombie. I have used the word "stop". I said it when I quit smoking and wanted a cigarette- or "later" and later the feeling passed. I have not word now other than if I have a second of panic - driving in city, almost missing a step ( yep, sometimes I think I do not have to look when my feet are???), or something comes up and I feel a quick panic over come me I just say "STOP". Even use it for senseless worry. Right now I am using it for clenching my teeth. Mine comes with great fatigue & pain and I have gotten to the point of not knowing where my CFS/ME , fibro, SAH and stroke comes in or not - it is all a big mess of pain and overwhelming tiredness. I can only rest it off and give into it as I think rest is what I need to heal at those times. I recently started a new supplement approach so I am thinking I will be healed in 4-6 weeks. I will let you know! Yes, I am in a desperate state of trying to get better. SO I do not have a WORD or anything that may help but this is how I cope with down times. Mine are about 1/2 the time or more. Feeling good is more rare for me than feeling like a zombie. I try to tell myself food is nutrition and sleep is healing. Maryb

Oh Win so sorry to hear you are having a bad time. Hoping you are already back from Dr. and you are feeling much better.

Hi Molly, First off I am not offering medical advice ........if it is a frozen shoulder and not a life threaten events........ I once had acupuncture for severe bursitis & tendonitis in my shoulder and shoulder blade that lasted no kidding years- like 2 years? My prescribed treatment was medications that did not help, I went to massage weekly. As last resort I did acupuncture for 6 weeks and it finally was gone. Mind you I still have a particle tear in my shoulder and any rotation etc kills me but that constant pain was relieved by acupuncture. If I could afford it I would go back now and have treatment on my fatigue and muscle weakness. I was a skeptic but had it done by an MD that also did alternative therapies. Just a thought, maryb

Thinking of you Tulip.

I wanted first to say hello and welcome to all the new BTG'ers that have joined recently. I do not know if I have "met" each of you yet but I do read daily. Some days I just have no words of wisdom or anything worth opening my mouth to say! BTG for me has been the greatest source of recovery out there. I really do not know how I would not have become insane with the way I felt after my SAH and continue to feel if I did not have this site to tell it is all normal. No one seems to have the answers we need to our questions. I have met some wonderful people here. I do not think a day goes by without a conversation from a BTG friend that makes me feel better. I have found out so many ways to cope through the wisdom of the founders of BTG and the different folks with their own personal trial and error journeys. I think we all share a common bond that sets us apart from other folks. Not saying that others do not have their own struggles but maybe it is because they have more understanding and support written for them. Also wanted to let you know all are welcome to join in the green room and have your morning cuppa or cup of joe while chatting about your day. I wanted apologize if any of our newest members are turned off or away by comments made by the folks here. I sometimes think it is perfectly normal when you put a group of head injury folks together that are trying their hardest to recover everyday. We are all from different backgrounds and different cultures that make it hard sometimes to understand. I also have been known for my tough love of pulling your boots straps up rants. It happens, we get frustrated. But we all share the common goal of wanting to be better. I know for me I am one that pushes to hard and runs into to wall over and over thinking I am cured. So anyway all you new folks …glad you are here this is the right spot to be if you had a SAH and are in recovery. I know for one I would be a mess without Karen and her hard work of putting this site up for us. I also want to say as much as I "spell check" I still cannot read or write so excuse this message and all its mistakes as I have to stop reading it over and over! Best Regards, MaryB

Thank you Karen and Lin, I love the water so I used to do the waves coming in and washing over my body taking away the pain and or stress away with the wave returning to ocean. I have so much trouble with finding that calm anymore yet I am as lazy as they come most days. You would think I could close my eyes and just go there. One of my favorite line of yoga DVD would be Rodney Yee - which are filmed in Hawaii I think..... I started today with my "new plan" again for getting well. This is like dieting or quitting to smoke it takes many times before it works out in your life. They say people quit smoking like 20 times before they can do it. I think I am handling stress better because I am more passive now and choose my battles but at work it really just builds up in me to the point of my head wanting to explode. I mean out of control explode. Elaine, I loved going to a therapist. I had only gone 3 times as I have to pay out of pocket each visit but he gave me focus and made me set goals. I was doing well with them until life throws you yet another curve ball. I seem to have fallen off the wagon again and need to go back for a "tune up" session. Maryb

Lin "I’ve bought some new yoga DVD’s – ones that focus on stress relief. I’ve learnt that an anxious brain has forgotten how to relax and it needs to be taught." Can you share the name of these by any chance. I use to have a very qualified Yoga instructor once that was wonderful although rather a nut but she had great classes and breathing was so important. She was far above any other teacher I have had. We all forget to breathe properly anymore, self included. More shallow and less purposeful. I need to be taught by someone showing me - not reading or listening anymore. Or shall I saw more so now.

I only had one, I have no aneurysm. I had a NASAH so I think maybe that is the difference in some cases. I think this December I will have my last MRI and it is only to check the tumor in my head. That will be my 2 1/2 year check up on that thing. Maryb