justsurviving

Zain, Everyone here is willing and able to listen to you and help you, your son, and your family. If you want to research it, it is spelled Emotional Lability (not liability) - very common in strokers. You will see many positive changes in the first 6 months or so (major changes tend to happen earlier because that is what is focused on) but improvement will happen over a lifetime if motivation is there. Doctors may say differently, but we know better than them - we experienced it! - Sherri, stroker at 34

Although I am sure it is a bit scary and intimidating for him - that is awesome, you both get some independence!! :beer:

I had mentioned previously that strokes affect so much more than the physical and cognitive aspects. I had lost so much of my confidence. I think that may be changing! :cheer: Last night I dreamt that I was back at the university where I got my master's degree (I utterly hated my advisor there) and was taking a seminar class with my old advisor as the instructor. In the middle of class, he looked at me and said 'wow, you look like you have put on weight' (which I have since the stroke, thank you very much). I told him that was very rude and how rude it is to mention someone's weight and/or age. ~I used to be such a straight talker, prestroke~ Well, the other students in my lab at this university have always had a 'god' image of our advisor and were not happy that I told him he was rude (just because you have a Ph.D. does not mean you are not responsible for your comments, in my book). I just thought Good for me! He was such a jerk. It was nice to wake up and feel like I got some confidence in my abilities back. :silly:

Sometimes speaking in generalities lets one get something off his/her chest without having to go into detail. Of course it may also cause confusion due to the vagueness but I am willing to take that risk. :big_grin: I am tired of egos - the large, inevitably fragile ones and the ones that need to be bolstered at the expense of others. +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ On a separate note, I know someone who used to be a salesman. The area in which he/we lived tended toward being very religious and his beliefs did not match those of his coworkers nor his customers, therefore, he became an expert at keeping his opinion/beliefs to himself while giving the impression that he agreed with others (without overtly agreeing). When it came to dealing with problems, he found silence to be a very useful tool. Unhappy customers would talk themselves out. Last night, I got the salesman treatment and I am still furious over it. I felt as though someone had agreed with me over time given our lighthearted discussions but when it came down to it and direct questions were asked, I got silence and was stunned. It hurt a lot that we apparently do not have the same ideas for the future as was presented. +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ Last one - I know someone who will ask about something painful, however, unless there is anything interesting to him, he will drop the conversation leaving the asked person 'holding the bag' and in emotional pain. I liken it to seeing someone with a bruise, poking said bruise while asking 'where'd you get that' and leaving if the story isn't interesting enough - the asked person still has pain in the bruise from being poked!

I talked to my sister over the weekend and she needed to talk about her fiance's accident (I hadn't known). Apparently, they had gone to a bar and while Mike had a lot to drink (bac = .2), my sister didn't (bac = .038) - but they got into an argument in the bar. My sister decided to leave the situation & got into the truck to leave. (Let me first say that my family likes Mike very much as he is gentle and very calm.) When she got into the truck, he had followed her and during the argument, he hit her. So hard, she saw stars. She started to drive away and noticed that he was standing on the running boards along the side of the truck. She stopped and thought he got off of the truck so she took off again. At about 30-40 mph, she heard something and slowed down abruptly. He was still on the truck and her slowing down caught him off guard and he fell forward, hit the side mirror and fell to the ground. She stopped and went to his side. Someone called 911 and the EMTs were trying to get to Mike but my sister kept insisting that he was okay, just sleeping (she was in shock). There was blood everywhere. The EMTs finally got to him and took him to the hospital. He was unconscious for a few days (but not in a coma) and is now alert but is having difficulty similar to us strokers - he is unbalanced, slight aphasia, general difficulties. She is convinced that he will bounce back quickly and will be fine in no time. I take the blame for this. I know I recovered quickly and it is unrealistic and unfair to hold me up as a typical stroker/brain injury survivor. At the same time, I had a stroke and still feel the remnants of it and struggle with it. This difference tears me up. argh. I also talked to my brother this weekend. His birthday was Aug 24th and I left completely obnoxious voice mails for him about how he is sooooo OLD! (his 30th birthday) about how he is closer to 40 than 20, he is an old fart. Oh, I was ridiculously obnoxious! I finally got in touch with him this weekend and found out that although he is old, he is still virile - his girlfriend is pregnant! I congratulated the old goat heartily.

I mentioned previously that I have a new super power, *STROKEDAR*, which allows me to detect strokers in a single sweep of the eye . Apparently it came at the expense of a previous ability. I have always had a fascination with science and biology. I loved to 'perform surgery' on poor Bob when he had so much as a splinter in his paw. Post-stroke me is a complete wuss now when it comes to the sight of blood and whatnot. In the shower this morning, Bob removed the bandaids from the catheter entry points and I saw that they were bloody. I actually then fainted in the shower. I woke up on the shower stall floor to Bob gently covering me with a towel so that I wouldn't get cold. Ugh. That is dumb. And ridiculous. It was a tiny spot of blood, not like I had a gusher for goodness sakes! I also look like I have been punched really hard on both sides of my hip where the catheter entry points are located. Black, blue, and an aquamarine-green. Actually fairly pretty if it wasn't so sore and on my body rather than a canvas. Bah!

We can only get through this the best way that we can. I can't possibly know what you are going through and vice versa but it is still done one day at a time. Although, at times it doesn't feel like it, we will make it through. I had very dark days for the first few months. I begged, while crying, to my husband to just switch with me for a day - let me feel normal again, let me feel like I used to - then I could handle it just knowing that I could make it. I don't know if those days were harder on me or him. I know that he would have switched if he could. You can make it. :hug:

I checked into the hospital at 9:00 am on Friday for the heart surgery. At 10:00 am, I was retrieved, completed paperwork, put in a flimsy gown (are any of them substantial?), hooked up to an IV, and hurried up to wait some more. I hadn't had any food or drink since the night before and had to be given sugar water through the IV. Finally, at 1:30 or 2:00 pm, I was wheeled into the operating room. I scooted to the table and apparently needed to do an abdominal workout before it was to begin - I sat up for some 'pads' to be stuck to my back, and laid down so that an X-ray machine could see if they were placed properly. Nope, had to sit up and lay back down three times before it was all done. I declared that I was ready for the good drugs and I don't remember a dang thing until I woke up in a cardiac recovery room after 3 1/2 hours of surgery via catheters run through 1 artery and 2 veins (one through the artery near my right clavicle and the other two through a vein in each leg) to cauterize the problematic nerve bundles. I thought that the catheters, and thus the entry points, would be small, like getting an IV needle put in. Boy was I wrong! The sites were covered with enough gauze and tape that it made walking harder and looked like I needed another cup in my bra. My first look at the sites were this (Sunday) morning and I passed out from the shock of it. We debated going to the hospital since I convulsed slightly when I fainted and decided against it since I probably just needed food. After breakfast and resting quite a bit more, I was good to go. Since I drive a manual transmission, I will be driving Bob's nice automatic Toyota Highlander once I am released to do so (Tuesday). Although the big packages of bandages are gone, the soreness remains. Most difficult are transitioning from standing to sitting or laying down. I look pretty funny like I have a corn cob shoved somewhere :blush: to ease the pain.

I always enjoy the tone of your blogs, Sue. You have a great sense of humour and a wonderful touch with words. Have a good day

I am so sorry that you are experiencing this. As a recent survivor, I stroked at 34 and it really set me back in many ways. I lost every bit of self confidence that I earned over those 34 years, I lost the ability to trust myself - my mind and my body. One month out is so fresh yet, although it doesn't seem like it I'm sure (it didn't to me at the time) - I am 9 months out from my stroke and I know that it is still fresh for me. My heart aches for you and for her both. This will use every ounce of patience that you thought you ever had. Take care of you.

AWESOME!!! :cheer: :cheer: :Clap-Hands: :Clap-Hands: You go, Veggarella! :big_grin:

I never thought that I would have enough to say three days in a row! I got a call this morning that the doctor that will be performing the heart surgery will be out of town the week of Aug 25th (my original appointment) so the appointment had to be moved. She informed me that she rescheduled it to Aug 18th...NEXT WEEK!! So - less time to freak out *but* moving freak-out anxiety sooner too. I am nervous, worried (one possible risk is stroke - argh, I don't want another one), scared, mad that I have to do it at all and regret that I didn't take care of this 2 stinkin years ago. Anyway, in other news - Bob & I both went to the walk/run program last night. I actually walked/ran for 1 1/2 miles :Clap-Hands: I alternate pretty evenly so I probably ran for 3/4 mile and walked for 3/4 mile. I can't believe how out of shape I got in only 9 months of being more sedentary than not. whew!

Me too!! :giggle: Thank you, Jean

:happydance: :bouncing_off_wall: CONGRATULATIONS on your accomplishment!! :Clap-Hands: :cheer: You should be very proud, we are!

I have decided to make this blog entry for all valid corrections and/or clarifications of previous or future posts. In order of recent valid complaints: 1) Clarification: In a post long ago and far away, I said that my advisor was compassionate, sometimes to a fault. What I meant by that is some people are very compassionate and others are willing to take advantage of that compassion. It was not meant in any way as a negative, only that some people are opportunistic in that regard. 2) Correction: Yesterday I posted in regard to my husband, Bob, "apparently I have plumped up too much for his taste." I posted this in jest because he has shown nothing but love no matter my weight & I was the one to actually sign us up for the walking/running program. I'm sorry that he took it personally & didn't see the humor (inside jokes don't come off as well in writing, I guess!). More to come, I'm sure :blush:

Bob has decided that it is time for us to get some regular exercise (apparently I have plumped up too much for his taste). We used to belong to a running group that met every Tues & Thurs and we averaged about 10 miles a week. Since I am unable to run fully just yet, we have signed up with a new group for beginners, incorporating walking into running/jogging. Last night was the first night. Bob couldn't make it because he was "working" (pshaw ) so I was going solo which always makes me a little nervous - would I find it? am I going to be the only 'problematic' one? will people stare? etc. - well, I found it and addressed the whole stroke thing upfront so that questions aren't (hopefully) necessary. After a few introductions, we were sent on our way around Lake Eola (.8-.9 of a mile). I walked for quite a ways and decided to try a jog. That is when I saw him. I knew him!! I had never seen him before but I knew him! I saw him ahead of me, walking my way and was just drawn to him. To make sure there were no assumptions, I went up to him and said "May I ask, did you have a stroke?" He nodded. I was right! He was one of my kind. "Me too" I related. I told him that it was my left side and I asked him when his stroke occurred. He hesitated and I realized that this was my first encounter with someone from Planet Aphasia. I was patient and let him speak. "3 years" he said. He indicated that he wanted to say something else and then said "Yours" Although I don't have a decoder ring, it wasn't necessary for our little conversation. "9 months ago" I told him. And then I felt guilty. He was using a cane and dragging his foot along while I was trying to learn to run. I know all strokes are different, I just couldn't help but feel guilty for being more mobile. He then said "3 times" and motioned a circle with his unaffected hand. I got it - 3 times around Lake Eola - I was very impressed as I wasn't sure I was going to make it once. I let him know that I was impressed. I touched his arm, let him know that he was doing great and hobbled along with blurry vision. I was tearing up because I got off relatively easy and I struggle so much that I can't imagine how he must feel. Tearing because I now have a superpower that I never would have had BS (before stroke) - a stroke-dar (stroke radar). Tearing up for all of us stroke survivors. I was glad that I was last, no one was around me to witness this and ask or talk to me about it. It took halfway around Lake Eola before I composed myself. I did make it around once and that was all I could do. My affected ankle was angry for this unexpected adventure and it needed a rest. It was a good time to go home and reflect on it all.

After taking my meds regularly once again (mostly thanks to Bob's huge reminder note on the door), I feel able, willing, almost okay (no, not content & certainly not happy) enough to deal with life once again. Better living through chemistry, huh? I'm hoping these antidepressants regulate the necessary neurotransmitters so that I can get off them ASAP. I don't like to take pills in the first place (although I always made an exception for birth control!) but I need to feel good about life. I'm sure it doesn't help to have a rollercoaster effect of on meds - off meds. My advisor claims that antidepressants should be in the city water I'm sure he is just saying that to be nice. Good news - the plans are in gear for me to graduate this semester! Explanation for those who care/want to know: For a Ph.D., I need to take all of the necessary coursework (finished that 2 1/2 years ago), take the doctoral candidacy exam (passed that 2 years - to the day - prior to my stroke, weird!), and complete the dissertation. To break that last part down, I needed to come up with an idea that significantly contributes to the field of Human Factors science, write the background literature, theory, and method of the experiment. Then I present this idea to a committee in a grueling 1-2 hour meeting in which I was questioned, grilled, and tested. The committee members then meet without me to decide if I passed the 'proposal defense' to begin the actual study. I did that in Oct 2005. Then I stroked in Nov 2005. I returned to work in a limited capacity and, thankfully, had research assistants to collect the data (91 participants). Now, I need to code the data, analyze the results with inferential statistics, interpret the statistics and write the theoretical and applied implications of the study in particular and how it impacts the field in general. Then, once my advisor deems it fit to defend as my final study, I again present it to the committee. They will meet to determine if I am a good choice as a Doctor of Philosophy. It is so easy to procrastinate because the whole thing is larger than life and hangs over my head threateningly. So I try to ignore it until I am overcome with guilt and anxiety. I work on it then get frustrated and try to ignore it once again - vicious cycle, I tell ya! Well, the pressure is on now. I have invited family and friends to the December graduation and I have privided my intent to graduate to the department. I have to get it done this semester. THIS SEMESTER!!! :silly:

Not only am I afraid of that, June, I am also afraid that I will never completely just flat out accept that I will never be normal again. Ever.

I know that I am a little punked out because of med mix-up (I forgot to take my Effexor & Aggrenox yesterday), but I have been wondering lately how long stroke related stuff will be on my mind. I want it gone. Now. Ugh, it is still here, dangit! I was talking to someone about my frustration that I am unable to do certain things. He sat thoughtfully for a moment, pulled out a notepad, and wrote "YOU HAD A STROKE" on it. I hated it. I don't want it anymore. I don't want to blame everything on it anymore. I'm tired of being tired and feeling guilty for wanting to rest, relax, or sleep. It almost pushes me to the point of anger - at the stroke, at the situation, at myself, etc. Yeah, this can be construed as a pity party & I truly apologize if that is what is being conveyed. I seem to be waiting for it to just go away already. I don't want to identify with it (the stroke) since I am at the far end of the continuum of looking more normal (but of course NOT normal) than being completely paralyzed & stroked out. Why can't I just be that extra step to normal than here? blast! :ranting: This in no way is simplifying or meant as an offense in any way, shape, or form to those who are on the opposite continuum - it is simply my burden right here and now. In the same idea - if missing one day of meds makes me feel this way & I don't want to be on these meds for stinkin ever, will I feel like this again once I get off them (in Oct)? UGH!

ROCK ON, vix!! Thatis exactly what I did to 'wake up' my left side. It was ugly at first, but I made my left had blow dry my hair, now it does a pretty darn good job. You have the right idea - awesome! :beer:

Celebrate your great day! :Clap-Hands: woo hoo for you! :cheer:

I like your refreshing perspective. I too am tired of having other people try to push their opinion down my throat and expecting me to retaliate. This is the biggest reason there is for having separation of church and state - people in positions of power should not be able to influence others with religion being the reason behind their decisions. I am tolerant of people's religious choices and I request that others respect my choice of spiritual connection.

This really touched me, thank you for writing it. In the deepest, darkest days of my depression, I often had passive thoughts of suicide (I wish the stroke would have killed me) because I didn't believe that I had the strength to make it through to where I am now. When depressed, it is not possible for the person to think outside of themselves nor to comprehend how their passing will ultimately affect others. I don't agree that it is an easy way to go, it is unbearable to be in that place and often it feels as though death is the only option. I'm glad I'm here and that I have a husband that listened, reasoned, and simply put up with me. :big_grin:

I know it is frustrating - but think if the results you will get (I'm betting that you have improved given your articulation here). I am rooting for you & sending my strength your way! :cheer:

In my opinion, it is because we are all human. You can't imagine my griefs and I can't imagine yours so I gripe about mine and you gripe about yours. It is the freedom allowed to all. None of the gripes here can compare to people's misery in the middle east/congo. It doesn't mean that we can't discuss our own personal situations.