justsurviving

I am so sorry to hear about your situation - I stroked at 34 but thankfully have no children as I don't know how I would have been able to deal with all of that in addition to recovery. If you are a reader - I really enjoyed Stephen King's latest book - Duma Key about a man with brain injury. It isn't the same as stroking, but I found enough similarities that it gave me ideas on how to handle the rage monster inside. You have more distance from your stroke than I do (I am only 2 years out), but I found anger to be (for lack of a better term) an easier emotion to access than any other. It is hard work, but have you thought about any way to address the anger? You say that you are still married but your relationship has ended - is your husband still living in your home? Does he help with the kids? Does he try to understand your situation? I wish you peace.

Welcome! I am no longer a 'regular' here but enjoy logging on every now and then. As I read back through my blog entries, I notice trends over time; how I improved, my moods changed (the angry phase was difficult but normal, I think), and how my thinking and attitude about my stroke. I wish you the best, - justsurviving

Hello again from the land of frozen tundra, a.k.a. Central Illinois! I have been here for 2 months now and have experienced an ice storm (not so much fun, especially on these seemingly new legs of mine), a snow storm (brrr!!), a thunderstorm (in the winter?!!), 65 degrees (short lived but enjoyed immensely), 17 degrees below zero (yuck. what else is there to say than that?), and tornadoes (again...in the winter?!!). Everyone here keeps saying that the weather isn't "normal". I've heard that so much that now I just roll my eyes at them and say "yeah, right". Bittersweet news: I was on business travel to Birmingham, Alabama where the weather was fine (75 degrees, thank you very much!). I assisted in a study with people over the age of 75 using a computer and the internet to download a program. I met with very, VERY flirtatious 75 year old men that really made my day. I felt pretty darn good about myself - my swelled ego barely fit in the plane for the trip back. The bitter part was all the awkward situations that arise during travel that makes my stroke symptoms really stand out to me. Examples: taking off and putting on shoes for airport security; trying to manage a large step up into the Hertz bus while holding luggage; stowing luggage in the overhead bin with a weak arm & leg. More on the bittersweet front: I had an EMG done at my new neurologists office & wondered why my Orlando neurologist didn't suggest it. Procedure for a leg EMG: (1) take off your snazzy slacks and shrug into a ridiculous pair of paper shorts. (2) sit on an awkwardly short padded bench somehow comfortably and with some dignity in the cold office (good luck with that!). (3) greet the technician while wearing nifty paper shorts. (4) lie down on the short bench while your legs practically dangle off the end. (5) have no worries while the technician applies little stickers to your foot and ankle. (6) start to get a little concerned when the technician pulls out a 2-pronged device and cackles menacingly. (7) try valiantly to keep from screeching as the technician shocks the heck out of your leg muscles...on your good leg. (8) actually follow the technicians orders to switch sides so that he can shock your affected leg (gluttons for punishment apply here). (9) continue to keep from yelping at each shock applied to the muscles of the leg (15-25 shocks per leg). (10) sigh with relief when the technician says he is done and the neurologist will be in shortly. (11) enjoy a reprieve of pain. (12) greet the neurologist warmly now that the tough stuff is over. (13) brace yourself when the neurologist and technician tell you to lay down again so that they can "hear" the electrical activity of your affected leg muscles. (14) sweat profusely when the neurologist jabs a needle (thicker than an acupuncture needle but not a full sized injection needle) into your leg in 6 places and has you flex while the needle is stuck in your muscle. (15) swear like a sailor at both the technician and neurologist. (16) catch very little of what the neurologist is telling you while you recover from the torture. (17) replay the conversation while putting on your business clothes and straightening out your new curly hairdo (thanks to the shocks). (18) figure out that the neurologist said that the electrical activity in the affected side is good so recovery looks promising. (19) smile in spite of the torture. (20) enjoy the bittersweet office visit to your brand new neurologist. I have met a wonderful woman here who owns a Pilates studio. I have a standing appointment with her on Saturdays so that I can strengthen my core which should increase my balance and confidence in my affected side. I am actually excited about life right now. I'm sure the feeling will fade but I am reveling in it right now!

I have been having difficulty falling asleep for quite some time now. It takes about 2 hours from when my head hits the pillow to slumber. Last night, I was wondering why I have this problem (for the umpteenth time) and I named it my "ice cream diaries" while in that delusional state of trying to sleep but not fully awake. That state of being aware that you aren't asleep but not awake is so odd, confusing, and frustrating. My only defense for the name is that state. No other excuses (I stay in bed, not wander the kitchen looking for frozen treats, really!). My last day at my job here was last Wednesday. I find it depressing to wake up in the morning and not feel as though I have a purpose & a time deadline to be somewhere to do something. I don't think I will be that good at retirement if this is any indication. I have been preparing to leave - packing up, saying goodbyes, getting my poor car ready for the cold when it has never experienced such atrocities in its short Floridian life. Things I will miss: the weather in Florida from October to June when it isn't terribly hot nor humid. So many of the people that I have had the pleasure of meeting (I would name names but it would take too much space and I am sure to forget an important name). The quick and entertaining lizards that frolic everywhere. My husband. Things I will NOT miss: the weather in Florida from July to September when the heat and humid is positively smothering. The stinking lizards that get into our house and are difficult to shoo back out. The "palmetto bugs" (good PR name for what they really are: flying cockroaches).

I have just returned to Orlando from a house hunting trip in my new town. It really is such a cute, quaint, welcoming town. I grew up in a small town without much anonymity. I moved to moderate towns in PA (Harrisburg & Wilkes-Barre/Scranton) and NY (Binghamton) as well as large towns (San Jose, CA & Orlando, FL) and learned to enjoy the anonymity that is provided there. Now I need to learn how to act in a small town again (making sure to look around to see if I recognize anyone, driving with courtesy, etc.). We were only in town for 2 full days and found an apartment and purchased all necessary furniture. It became very overwhelming at times because the reality really hit me. My apartment will be on the second floor so I should be getting good with stairs shortly, I hope. On the flight back to Orlando, I accidentally left my purse on the plane. I didn't realize this until we had already arrived at our vehicle. Bob dropped me off at the departure area to contact someone about my error. I had to rush quickly to the ticket counter to talk to someone. The good news was that my purse was found. The bad news was that I had to rush to gate 97 to get it. This meant going through security again and getting onto the tram and to the gate to ask for 'Alexis'. Bummer, you think, right? Actually, this was a blessing in disguise. To catch the tram going to the gate, I had to get up to a slow jog to get on in time. I DID IT! I haven't been able to run since the big, bad stroke. Actually, I *could* jog, but it was painful and a level beyond awkward. Maybe, because I wasn't over-thinking, it wasn't too bad, slightly awkward and a little uncomfortable, but do-able! Okay, so I won't be able to run from someone. But, I can lightly jog to avoid getting drenched in the rain or catch up to something/someone. This is huge for me. It is a baby step, but a step nonetheless. As I came back and caught up with my husband, I was giddy with excitement. Like my dad, he knows how to beat the happiness and excitement out of me without the intention to do so. In his happiness, he played on it to the point that it was no longer a positive progress for me. He means well and I appreciate his feelings and intent. I told him that he can no longer talk about it or else I will deny the entire experience! :giggle:

Today is my two year recognition of my stroke. Life is so much better at 2 years out than 1 year. I am coming around to acceptance. I don't know if I will ever totally get there but I am coming around. This whole experience has really been a trial in so many areas of my life. Work-wise, it has really made me question myself and lose confidence in my intelligence and abilities. Of course this has positives (made me work harder to get my Ph.D.)and negatives (losing confidence has had the most detrimental effect on my work life). Marriage-wise, the stroke made me more dependent on my husband. Again, positives (I was *too* independent BS [before stroke] and needed to need Bob again) and negatives (the fine line between a healthy amount of dependence and an unhealthy amount) but I think I am getting it figured out. I recently got some great news - I got a job! In my field! Although the interviewing was rough, I think it will be a really good job for me. I will be moving to Illinois (from Florida) so that should be an interesting shock to my system. It will be good though. I am moving to a small town that is very cute, quaint, and welcoming. Bob, my husband, will not be moving with me. That sounds ominous, doesn't it? We discussed this long and in-depth and decided that while this is a great career move for me, he has invested a lot of himself in the company he works for here in Orlando and isn't ready to leave yet. We have a plan - in 6-9 months, we will re-evaluate the situation to determine if it is working for us. If we both are attached to our work, we will take it from there. If one of us is ready to (a) move back (me) or (b) move forward (him), then we move back/forward. We lived in separate states for the first five years of our marriage so we have experience and are very good at the long distance relationship stuff. We have a ton of trust in each other and are really good at communication. I'm excited, nervous, and really looking forward to this next phase. I will actually be winning a lot of bread for our family :bouncing_off_wall: and can't wait to be useful and a contributing member of our relationship. YAY!! :cloud9: . In summary, I like the two year 'stroke-aversary' better than the one year!

Monday, August 13th, was my 21 month stroke-aversary. I didn't even notice it until I was in bed and almost asleep. This was really liberating for me. ~quick hijack...is this icon doing what I think it is doing? :i_did_it!: oh my oh goodness - at least it is beeped out I guess~ Anyway. I am continuing to improve mentally and emotionally. I am tenderly stepping up to the realization that having a stroke at the time in my life when I was the most fit was good, not bad - it helped me to rebound. I continue to have walking problems and remaining numbness in my foot but things haven't looked this good in nearly 2 years. :laughbounce:

The anger is tough but important to work through. I am barely on the other side of it myself. Best wishes to you.

Everyone has an internal compass - probably many internal compasses (that is the correct plural term right, not compi?!) for morals, attitude, integrity, and the like. The stroke spun my compasses (that just looks better than compi) out of control. Not that I have done anything wrong (a.k.a. interesting), I just was 'off'. After the stroke, my attitude compass was pointing straight West - I was, for lack of a better term, pretty much stoned for quite a few months (I suppose this makes sense given the dead brain cell similarity with drugs...). I was happy with everyone and everything in the world. If you hit me in the mouth, I would have said 'that's okay, no biggie' whereas my previous attitude would have been to deck you right back! Then, my compass needle started to move and flipped to a strong East - I was angry about everything and at everyone. For no known reason. I am working to get my compass to move back to true North. Right now it is vascilating between North and East. I am more North by NorthEast right now and it feels a lot better than full on East. I have always been opinionated and blunt and had tamed those to the point that people could stand to be around me again. Now I have to focus on it again. I still find it very difficult to focus on those types of issues while just living. I am determined though. I want to be back to as close to me as I possibly can. Now that I read through that, it is a pretty abstract concept but I don't know how else to explain or phrase it - it is the image in my mind that represents my feelings the best.

Glad you could relate, Carol. It seems that no matter how many times I try to convince Bob that I'm not all together in my head, he decides to argue with me - how can that work? It's my head!

I don't know if this is normal or even rational (maybe psychosomatic?) but I feel as though I am noticing/having more cognitive-related issues that I remember having before. Attention, memory, and confidence issues. Maybe it is because my attention and memory or just general metacognition are improving that I notice problems or gaps, could that be possible? Maybe it is that I am becoming more aware of my surroundings and my impact on others that this is coming to light. Maybe I am just getting dumber by the day. Anything is possible, I guess. I am having a difficult time reconciling what I am able to do, mentally. I do not have confidence in my mental abilities. Bob tries to reassure me that I am just the same as before in regard to intelligence, memory and whatnot but it is very frustrating to feel a 'lacking' and be told there is none where I FEEL it. Does this go away or do I need to somehow design ways to compensate for it? Both compensate for the short term and wait for it to resolve in the long term? It is making me crazy (not that the trip to Crazyville is far, mind you). ~big sigh~ I have trouble trying to think through this and deal with other things as well. It seems as though I can only attend to one task at a time. I used to love multitasking and I was pretty good if I do say so myself!

I hope it makes you feel better that we all lose intelligence after age 25 or so, the loss may not be due strictly to stroke, it may also be aging.

Something abnormal has been happening lately - I have started to have nightmares. I haven't had nightmares in years. I mean the kind that make your heart and breathing quicken and you awaken with a sense of dread in the middle of the night. Could this be good or bad? It might be that my brain is using less time to heal throughout the night and now it can get back to 'regularly scheduled programming' (dreaming). I sure wish it would choose better dreams. Last night alone I woke up twice. The first was from a former coworker (Matthew for those that care) who came back to town and I somehow found out that he had hurt someone (possibly killed) and he was after me since I knew. The second was that I was a young girl dating in the 1950's. I was dating this sweet, innocent boy (think Beaver Cleaver) and his father decided to 'have a talk' with me. He tied a chain around my thigh and wrapped it around the table so that I couldn't leave. He insisted that his son and I were having sex (we certainly were not). Then he stood up and started to unbuckle his belt "since I already had the experience". I unwrapped the chain from the table and started to run screaming. Creative, yes - horrifying also. How do I know how much sleep my brain still needs? I know that I am cutting into sleep time as it is by waking earlier to go to work, this is making it worse.

Sunday was my official 'stroke-aversary'. My stroke hit on Sunday, Nov 13, 2005. I slept in on my stroke-aversary and it was eerily close to the day of my stroke since it hit while I napped. It is still scary for me to remember it. Far scarier than when it actually occurred as odd as that sounds. Nowadays, I feel as though I am more hopeful than hopeless which is a great turnaround for me. I quit going to physical therapy because 1) I have plateaued and 2) I only have 40 visits/year as it is and I need to conserve for when actual improvement is happening. I cross my fingers that my progress continues. :sleazy: Be well.

17 months. I have blogged about this before and I find it to still be true - I find myself becoming more and more aware...'waking up'. by looking back and understanding things that I didn't or couldn't at the time. I wonder if and/or when I will ever be fully aware or awake. I am coming out of the anger and bitterness that had such a tight grip on me. Bitterness at my body for betraying me, anger at myself for not getting to the hospital sooner. I feel the beginning of hope. :laughbounce: It is a great feeling. It isn't related to my ability to recover. I think it is from my psychological growth and review of my situation. My birthday was yesterday. My first birthday since the stroke that I am happy that I am alive. My first birthday as a Dr. :yukyukyuk: and I am beginning to believe that I deserve the degree. I am hopeful that my life will have a purpose. There is no possible way that I could have made it as far as I have without Bob :hug: I hope to become half of the person he is. Honest, full of integrity, caring, selfless, truly the man of my dreams (Bob, I know you are reading this - I will still get irritated at you at times, just to warn you! ) There is hope and life after stroke. You couldn't have convinced me of this just months ago :nuhuh: As one of the biggest skeptics, I am here to say otherwise! :cheer:

Gosh I can really relate to you! I have two sets of two worlds. My first set is like yours - I have trouble walking and people reply "oh, me too". Really? So it is just normal and not just because my left leg doesn't know what to do? bah! My second is that 'normals' can't relate to me and 'strokers' can't either - I don't feel welcome in either world. I am too broken for the normal world and too normal for the stroke world. bah!

Although our situations are not identical, I can relate to you. I had pain in my neck and weakness on one side of my body. The doctor reading the CT scan claimed all was well. I stroked 2 days later at 34 years of age - top of my health. I am still bitter 16 months later and I need to figure out a way to work through this or get over it because it isn't healthy for either one of us.

Not yet a year and a half since I fell over. I am trying to be patient which is not my strong suit. Over the weekend, we bought a trampoline. After 4 hours of unpacking and setting it up, we bounced and bounced and bounced! :bouncing_off_wall: Bob has a friend that broke his back many years ago and had partial paralysis in his lower legs. Throughout rehabilitation, he said that the thing that seemed to help the most was using a trampoline. So, we bought a trampoline - a big one. It is in our backyard and has a large safety net surrounding it so that I won't bounce right out of our yard. :blush: The fact that it provides balance opportunities since it is instable is great according to my physical therapist. Our plan is to bounce for 15-20 minutes a night. The hardest part for me is getting in and out of the netting, it is a little awkward and probably amusing to watch, but I managed it all on my own last night. It is a surprising workout as well - we get our heart rates up a good bit while bouncing. :silly: I promised Bob that I will re-evaluate everything at the 2 year mark. I will try my best to be patient and work at recovery (not that I will give up at that point, but this is my current goal).

When I first got out of the hospital and was a PT regular, I saw a cute little toddler trying to learn to walk and I thought "I feel your pain, sister" I truly felt connected as I tried so much to learn to walk again. A friend often told me that there is a reason that it takes children a long time to learn to walk - otherwise there would be crazed lunatics running around and into everything, without the experience of falling down and getting the hang of it. I know he was trying to tell me to be patient, but by golly patience has never been my strong point. In many ways, I have felt that I am aging again. Right now, I am in adolescence - I feel graceless and unsure what to do with my body and how to handle social situations. Being reminded on a constant basis of my limitations has pummeled my sense of self, my confidence, my knowledge of myself - I am relearning this (adolescence revisited & I didn't like it the first time around!). I am trying to determine what I can do, what I can't do, nevermind 34 years of experience. I am traveling through the second aging quickly & hope to make it to adulthood soon. With some grace, self confidence and self worth. I wake up each day changed, whether it is recognized or significant or not. The truly infinitesimally small changes are impossible to notice but to look back over the last month(s), I feel as though I have been waking up, so slowly. Here is to waking up! :beer:

As someone who does not have children, I find your post interesting. Good way to think - who can I not live without...my dear husband is the only person who comes to mind. I will miss others but I cannot imagine my life without Bob.

I used to tire listening to new mothers say their child's age in months - now here I am doing it regarding my stroke! 14 months. Well, the good news is that I have started to relearn rollerblading! I have even graduated from the death-grip hold on Bob to having him jog (oh-so-slowly) next to me. I still need some help when I get distracted but I am working on that. Trying to avoid dog doo is very distracting :head_hurts: I feel very optimistic!

I appreciate the information and support that this community has offered but as I return to more of my 'old self' the more I find that I don't fit here. I agree with the 'payback' sentiment, Phyllis, for those that can provide that payback. I have known for most of my life that once I learn from a situation, I find it difficult if not impossible to relate to those in the same situation that I was once in. I 'fix' myself and move on. I am deeply grateful for those that know how and are able to payback as I realize that I have healed with help from their knowledge. Thank you!

Like many people, I am not in the midset of making specific New Year resolutions. Rather, if something needs to be changed, I prefer to attack it as it comes along instead of accepting the status quo until a meaningless date. At the end of the year, I can't help but think about what 2006 has meant to me. "Justsurving" is an apt description of the first half of the year. I think that I started to become proactive (hence graduation) once the cobwebs started to clear from my damaged noggin. They haven't cleared completely but I know it is mostly from my choice to disengage when I get overwhelmed or fearful of testing myself. I think I am concerned that if I really try to use my brain, that I will be disappointed in the results and discover that I am dumber than last year (although technically after our teens, we all are). In looking forward, I hope to spend less time on the strokenetwork. I do not want my stroke to define my life. I need to move on and experience my life with an open mind.

It's not that I think you didn't *try* to understand Jane's perspective, not at all. It just simply isn't possible for someone to empathize when they haven't been in the other person's shoes. Neither Jean nor Sue could possibly understand what it is like to have a stroke (& I don't wish it on them or anyone) even though they are caregivers. It can hardly be explained by the stroker even if we have the cognitive and speaking abilities. Any attempt at explanation cheapens (for lack of better word) the real experience of it. You can observe and talk but you just can't possibly know - what a difficult thing to grasp, acknowledge, and let go. I can't imagine your pain, I really can't. Although I will miss you, I wish healing for you.

Jean is right to an extent. Strokes are too much to deal with on their own much less attempt to keep up with a relationship (and a long distance one at that). My husband had to take on all of the work for our marriage for quite a while and I am sad to admit that he probably still is doing a majority of it. For the first five years of our marriage, we lived in different states (me in NY for 2 years and FL for 3, he in PA for all 5) and I don't know how our marriage could possibly survived after my stroke had he not lived here with me to do everything that he did. Thankfully he is patient, compassionate, and hardworking - even with all of those traits, had we still been living apart, all bets would have been off. I do think that the hardest thing for you seems to be to let it go and just know that there was nothing you could have done. Whatever happened in that 48 hours doesn't matter. It happened. Somehow you need to accept it and let it go. I hesitate writing these past few sentences because I enjoy your 'company' and I can only imagine what you must be reminded of each time you visit this site. Take care.