Jump to content

MaryB

Members
  • Posts

    855
  • Joined

  • Last visited

  • Days Won

    1

Everything posted by MaryB

  1. Julie, I was on HRT ( Premarin) for 23 years. I was taken off the estrogen but stayed on a low progesterine as my gyno and family doctor think the heart benefits out weighs the cancer risk for me. I have no cancer in immediate family but high risk for a stroke or heart attack. So for me I was pulled of estrogen the minute I was talked to about it but continued with the progestine as they thought full blown menopaus would be a nightmare for me. Noting I have hot flashes now even on the low dose. I think this is another area where there is no clear answer but you & your doctors need to out weight the risks. Good luck. Maryb
  2. DebZ - kind of exciting I worked for 5-6 years in kindergarten as a aide for the highest and lowest kids. It was so rewarding, I now want to shout on the roof tops when a light bulb goes off in my head that I now know how a kid feels when they "get it" finally. I hope it continues to go ok. It will take some time to get use to, nice thing with kids is they do not know when you are having a moment! First day under your belt, good job!. Are the schools as strick there as they are here no extra days off etc...... pretty formal and no way to change schedule. Now that I am on adderall for my CFS/ SAH & cannot stay awake withtout it I have moments of great insight. On day 2 of ritalin it kicked in my "Oh I remember how to cook! I for ove ra year was unable to just go cook a meal it was like I brain surgery to me to make soup something I have done a billion times etc. It was like a light switch went off and I wanted to tell all the teachers i knew AND doctors how fascinating it was to have that happpen. Are you phasing back or just back for the school year. Our school would not of allowed a phased back. Good luck may everyday be easier. Maryb
  3. Sorry Myra about your hearing. I do not know how old you are or when your SAH was but mine was about 2 years ago and I either have super sonic hearing but unable to make out what they are saying or I misunderstand the words often it rhymes with the actual word. Background music and noise bother me and mess me up big time- like on TV if they are talking but music is playing in their background I cannot hear the voices as the musice part is too loud. Also my husband listens to TV on 24 volume but I am around 9-11! I should be deaf as both my parents were really bad as they aged. Good luck - at least they can help this and you need to get that BBP under control like yesterday! maryb
  4. I wonder if I even wrote on BACK TO WORK on a Friday evening how different I would sound? That is my day when I think I cannot make it till 5:00 or how will I make it? I think you are so right Sandi it would be so much easier to of been told how hard it was going to be. I also might add that SL you have a family I only have my husband, 2 dogs and 2 cats when I am home. I have been pretty much "absent" from a life outside of work even in my own house. My yard suffers as do my standards of cleaning! I do not have to cook if I do not feel like it or even talk to anyone. That is pretty much how I have survived the last 2 years. I am just now adding that “other” part & not lounging on the couch when I am home. Kudos to all of you with a family, I wonder if your brain adjust to their noise and movement in the house faster than ours who live with just an adult? Hum? I wonder about that.....My husband has to tell me when he is about to grind the coffee or make some loud noise or I about jump out of my skin. I should have known how hard it would be when doctor gave me a permanent handicap license plate! But no I was offended. But I am clear at work I cannot do more than I am already doing and it is going to stay that way unless I improve a lot more during the next year. Maryb
  5. Sandi, Thanks for starting this thread it is a good one for sure. XO maryb
  6. Desy, if I had a choice in not working I would have certainly waited longer to go back until I was further along in my recovery. I am so glad you have an understanding partner in this. I cannot imagine what it would be like to not have one. Take your time you are early on still. SL, This is my motto at work “I wish I could work more as I know I am needed, I do deserve my pay as I work hard as I ever did when I am there, I cannot do more than my body & mind allow so I while I wish I could make things easier on my co worker that shares my job it is not in my power to work more hours”. I wish I could but I cannot and promising I can will not help me.” I basically accept and no longer judge myself or feel bad that I am working less. I do not think of myself as the weak link etc. I just cannot do anymore than I am doing and I feel I am keeping up with others although it cost me my social life. Life is always better when there is not a barking dog to listen to all day and the staff is less- I find I can work better harder with less staff than with more staff and more commotion. I would prefer no one was allowed to talk and they had to give me a message in 7 words or less than to yap a paragraph telling me a story! If that makes sense? I do wonder what is from SAH, CFS/ME, Fibro or is my brain tumor near my brain stem growing. Wish I could just accept that! Really does not matter if my hands are so sore if I held something too long, is this chronic backache and neck ache normal? Is the pain deep behind my eyes ok to have? Why is my head too tender to lay it down on a pillow again? I go back to the doctor 9/10 so we shall see what he says. I had a good 7 days in a row but it was due to the medication combo I was on then I hit the wall. Even on the same combo. My body & mind is just exhausted. We shall see how this continues. I have a review with my boss coming up and I have always scored very high but I know I lack in some areas like writing in a chart while someone is talking!! YIKES! Having 7 good days was like a miracle. I have not had that long of a stretch of feeling well for years, way before my SAH even. It was like heaven! But I have consequences for it – imagine you just feel great and you do not have to pay the piper in any way! Well I until things change I will just keep putting one foot in front of the other and push on the best of my abilities on that day! Maryb
  7. Julie, I have this conversation with so many women in my life. I say we never sleep after we have a baby and that is why our health suffers more than means. We are light sleepers and once we become one it is hard not to be one. I have been working on my getting to bed by 10 up by 6:30 now. AS I am in a new stage of recovery. I like Daff have a bit of a routine. I have to sleep on my stomach as I have shoulder and hip issue, no pillow, head on side. I have slept this way for years now. But getting to bed by 10:00 is a tough one as I sometimes get my second wind from resting 4 hours after work! We also have a fan runing in summer and a humidifer in winter for background noise. One thing I had to teach myself was falling back to sleep. Too bad doctors over there just won’t give you a mild anxiety pill so you can learn to go back to sleep. If my mind starts in I literally have to say "shut up" and close my eyes and pretend I am just falling back to sleep, and breathe. It takes works almost like meditation. If you can get to that let it go part and just say STOP to your mind. Not that I never have a night that is bad but that is rare. I am lucky my family doctors the past 20 years get that night time sleep is so important to my fibro & my health that they gave me something to take the edge off so I can fall back to sleep. I have said before having fibro was a blessing because I already had down so many of the obstacles of adjusting my life after the SAH. I really do not get why doctors are so worried about a little something to get someone to sleep though the night as nothing is more important to your health no matter who you are. I look at the young mothers at work who have not slept in 4 years and jeez they are worse than I am some days! Good luck, maryb
  8. Desy, Did they not put you on a medication last weekend. I guess not, I cannot tell you how many Doctors I have to search out for the right medications etc. It has been a long 2 years - don't get me wrong but I am better for it. As well as a better person since my SAH etc. Sometimes I wonder if the question you / we need to ask when they say they have no answer for our issue is WHAT AM I SUPPOSE TO NOW ? What would they do and who would they see? It is like they say something like "ok, mri is fine" and we jsut accept that we are not so we feel empty and don't know what to say. I also had moments of just feeling like I could drive my car off the bridge - once at about 6 months I had a car in my lane passing 2 semi trucks speeding right at me and he was about one semi away, he had to drive across my side of the road into a field. I never blinked or had once bit of panic I was just driving wondering what was going to happen. Lucky it turned out that way. I am sure you know you need more testing etc and someone needs to find a way for you to be more comfortable. Like I said I just have not given up on myself and finding a way to feel decent again. I know for me at 23 months I am much further along with healing and that first year is tough as I just think they need to see where things sort out. There is so much more they do not know than they do. To give you hope I just had a seven day stretch of feeling really good. I have not had one of those since way before my SAH between Fibro and CFS I always felt cruddy. I feel cruddy today but well deserved I did more this week than the last 6 months I think. Good luck Desy, I have those same feelings but would never act on them but couseling is a gift from God. Everyone needs some even "normals" not just us Abbie Normals Maryb
  9. Desy, I never heard of non epileptic seizures before, thank you for sharing. I looked it up on utube. Thanks for sharing and enlightening us. I hope your new medication works well and you are back on track ASAP. Maryb
  10. Yes that is the hardest part or when you get up to do a chore you realize you cannot. But that type A will come in handy with recovery!!
  11. Hi Kathryn, Just wanted to welcome you and say Hello! I would take as much time off as work as possible only because it is hard to commit and make a mistake by doing so. You seem to have a great handle on things and have doctors willing to listen to you. Good for you on that one! I committed early back to work and as I wrote in" Back to Work" page today at almost 2 years I am now just trying to add my life back. It took/takes all my energy to work and I was left with nothing for anything in my life. Lucky kids are grown etc. But it has left a hole where I do not enjoy much of my old life. SO my advice is take it as slow as possible and add work to your life instead of life to your work. It took all this time to get meds sorted out and a channel blocker was added maybe 6 months ago so I was not having a headache everyday but it has taken awhile to get it just right. I sitll have occular migraines, with stiff neck and fatigue but it is not as often now. Maybe twice a week if I over do it. Good luck, maryb
  12. I am almost at my 2 year anniversary of my SAH. I went back to work 5-6 months phase back to a noisy small animal veterinary clinic where I have worked for 17 years as an assistant. I am amazed and stunned how well I do at work and how well my skills came back. Not to say I do not have periods of being over tired, forgetful and overwhelmed by the busyness & noise of the day or week. Or that it was ever easy. My week is pretty much broken up and it helps a great deal. I am however realizing while I got my back to work down I did not get my “back to life” down. Up until the past few weeks all I did was work and rest. I did just enough chores to make it “ok”. Nothing extra or have any kind of routine at all. But I am working on that now. I must add I am on a medication that helps with fatigue as I was ready for bed 2 hours after I got up and I could barely get off the couch. I am hoping I have the right dosing down now. I do have other medical issues that make some things more difficult or impossible. I have started to try to re motivate myself into doing a small project at home, getting back to a normal routine of picking up the house etc daily, including cooking dinner. It has been a challenge for me as I had to return to work for the health insurance coverage my job provides. But it used up every ounce of my energy I had and I had nothing left to use in “my life”. I am feeling pretty good about this new adventure. I do not think I could do any of this without BTG as a guide and mentor. I was just visiting with an out of town friend today and I was telling her how much I had to changed my perspective to be able to move forward. I rearranged my mind to think of things differently and more positively or I could not have made it through the past couple of years. By changing the way you look at things it has made it possible to stop that voice in my head telling me negative thoughts and limits I have/had. I still have struggles in certain areas but I am feeling really good about starting a new chapter. Now maybe I can enjoy some of the activities I use to enjoy or at least be able to move forward with something new. Maryb
  13. Win my dear, I do not have a shunt but I cannot stand noise- I can barely yell it bothers me so much. I also was telling someone just the other day that I literally walk away from people telling stories at work etc... I try to pretend they are not talking to me but there are days I cannot listen to people. I know they think i am so rude but my brain is full and I cannot listen. I also have said "shhhhhhhh" to co workers that are loud talkers. Not only loud talkers but fast, loud and really only need to say one sentence instead of a story to me. Yep, you bet that goes over well. And I agree you need to ask your Dr about this if it is new. I certainly do understand the noise etc....I feel it is not that I lack empathy that I have but it is all used up for people that are struggling and trying their hardest. Not people who can control the situation and are not. Good luck, maryb XOXOX
  14. Happy 3rd anniversary SL. Keep up the good fight. Maryb
  15. I too have muscle spasms and twitching but can be side effect of some medications. They do drive you made when you see you thigh muscle just a dancing about for 20 minutes.
  16. Lisac, I am worse with my memory when tired for sure but even during the day at work if I weigh a cat I have to literally write down the weight right after I take it off scale or I will forget it. It is really bad with numbers and letters for me, dialing phones (Augh!). Short term memory is worse by far. I get that house thing too, can't say I repeat myself more than maybe 3 times? Maybe 5? I cannot believe I hold down a job. I can recall crazy things like vaccination records, protocols etc..But I swear I do not recall clients that were there last week or swear that dog use to be black and not black and white. Clients will talk to me as we were best friends telling me a story I should be familiar with and I am totally blank. I have no idea who they are. Yet medically I am on the ball at work and it is a good routine for me and always has been. I do forget a lot. I also will think I need white pants and I literally have 8 pairs of them but no white shorts. Like I said I am much worse when tired. I was telling someone earlier I think I use all my brain power at work and have nothing left for home or motivation. I would have totally done the same things with the skis. I have wondered if it is that we are getting better but our memory or brain can only hold so much information at this time. It seems that way to me. Like I can do more and be high functioning in certain areas but the village idiot in the grocery store. Still you should bring it up to your doctor next time you see one. I have thought the same thing. My husband told me last night “I know I have told you this before but I am going remind you again I am going to be out of town on such and such date next week." I was like nope first time I have heard this information. Once again it is like the brain is healing but not in all the areas at the same time weirdo kind of thing. I use to have seconds of complete blank of "Where am I?" at least those are gone. Like I do not recognize the area in which I am driving or at. Funny I seem to start having this about the same time too but like I said it was like a block of brain healed but the part that connected to that block hasnt gotten there yet OR are we just doing too much. I compare myself to an eldery person by afternoon I get forgetful and very tired. Even if not sleeping I must just lay down and watch a marthon of NCIS. Good luck, Mary
  17. Do you guys ever get the written report of scans?
  18. I have yearly MRI with contrast where they take photos and later inject dye and take more. This December will be my last one unless my tumor has grown. It is painless and I drive myself-I think... yes, pretty sure as I went to Neurosurgeons office afterwards and he went over my results. Good Luck, Mary
  19. One thing I have learned in my life is that just because the Dr. prescibed you something you should not settle if it is not the answer. There are other treatments and you just need to speak up until they can help you with a solution. Good Luck Maryb
  20. Debz, I am sorry your partner has behaved that way. I would try to have a conversation about it and find out the reason he is feeling this way? You look pretty young is it immaturity or something more? Of course I would suggest to have this conversation on a good day for both of you. My husband has been more than understanding but he says he is ready to sell this old house and move. I think it is because I use to do much more around the house than he did and now it is the reverse. I liked projects and he would be happy to never have another as long as he lives. Life just does not work that way when you owned a home. Anyway ... I think it is something to get aired out and see how he is feeling. Good Luck, maryb
  21. With my NASAH I was off 3 months to "heal" but I also had a vertebral artery dissection and if I recall right it takes 3 months for that to heal- as in sutures/ procedure not your brain to absorb the blood. Also it would be great if you can get records of where the bleed was, any damage from scans etc. It helps to understand it all, for me I had some damage in lobes and it is nice to know that is why reading and writing is a struggle. Otherwise I would be depressed thinking I jsut dont get it- it helped me to know it was damaged in a strange way so I could "let it go" instead of beating myself up over it. I was phased back to work at 5-6 months.
  22. Sorry Sean for you having to go through this. You may ask WHY you do not see anyone for a follow up, ask all those questions scaring you NOW before you do not get a chance. Was there not known cause for the SAH? In that case there is a slim to never chance of it happening again but still ASK now before you leave. ALso ask who can you call with questions. Geez, It was 1 1/2 years before I even thought to ask where was this "rare site" of the SAH was. I cannot stress enough to ask NOW. And tell them you are scared. Are you alone? DO you have family? I was able to text in hospital as well. But I just really thought I would have someone that specializes in the brain there for me to ask questions. Good Luck on finding this site so soon!! Cannot stress once again to be firm that they give you information, let them know You do not not understand. Keep in touch. Maryb
  23. Welcome, My doctors in the past have agreed nothing is worse to your body than not having a good sleeping pattern. I have dealt with this before SAH and we are not talking heavy duty drugs but gentle sleep aids. I have a high tolerance but I firmly believe we must sleep at night. I now sleep great at night. It sounds like it will be awhile before he returns to work so sleeping at night may be in his and yours best interest.? Just my thoughts. I would like to add it tickles me in a way to see the young mothers at work that are 4 years into their sleep deprivation and how it makes them act as silly as I am on some days! They are forgetful and make mistakes, cannot recall a name or say something completely wrong etc. They think they are losing their memories but they have not slept in 4 to 5 years well. It makes me feel so much better! Maryb
  24. Aughhhhhhh Fatigue!! Such a dirty word to me. I would so much rather have pain I think? Or why is this even a debate in my head. Or maybe that is because I am struggle so much with fatigue. My neuro and now GP have changed my hyper activity medication to Adderall and I cannot tell you how much I hate taking it. I promised I would take my 10 mg daily for a month to see if it would help. I think I am ½ through the month. I was hoping a change in "thnking" I was tired would change my "feeling" tired. I am tired but don't blink! Note I have been diagnosed with chronic fatigue along past few years with 20 plus years into my fibro. I really only need 2 days a month to feel like the old Mary and be normal. Sounds like I am shooting low but 2 are all I am asking for. It gives me hope. My tiredness was around noon everyday crept up to 9:00 am. I was like give me a break! I am awake only due to the medication. I still cannot overdo it. Medication for me has not been the miracle I wanted or that magic pill. I can work and I work full days twice a week. I can hold a job but that is basically it. I have to pace my life to a large degree, if I do something on my days off it is like working, visiting with friends and family is exhausting for the most part having to carry on conversations-I prefer them to be short visits like over dinner or lunch and not an all day thing. I work 34 hours a week in a veterinary clinic with loud animals, phones ringing etc not the ideal post SAH job but needing that health insurance is top priority for now. I also have to say I often wonder had I not gone back to work would I have regained as much mentally? I can do my job in my sleep, hahahaha no pun intended. I really have not lost too much of what I use to be at work or can say I can justify my wage. I am still very productive.But by noon I start to fade I can push through most days until 5:00 but I head straight for the couch when I get home. I cannot have nothing to do or I would want to lay down so now I am asking receptionist for paper work to fill out so I can sit and be busy when I am slow in appointments. But it is mental and physical. I am best without any added bologna added in the day. But the fatigue! Oh my how much I wish to wake refreshed and feel great once in awhile. MaryB
  25. Oh so glad you found this site so soon. You are not alone with your experience and lack of discharge information. There are many good threads to read in older thread section. There are several of us here that have had the "NASAH" bleed. I am coming up on my 2 year anniversary soon. Take care, rest, eat well, you need to ask for help and not over do it - it was your brain that bleed not a broken arm! I think we all felt traumatized a bit. I was in a deep (drug??) fog for weeks and really did not get much for months. But here I am and I know it will never happen again so that makes me feel much better. Fast healing to you. maryb
×
×
  • Create New...