justsurviving

DH (Bob) is in Pennsylvania for the week so I am lazing around enjoying a *quiet* house (that boy sure can be loud!). Last night, while watching TV, my neck started to hurt. I couldn't tell if it was a muscle or the same pain I got from when I stroked (carotid artery dissected). It freaked me out. I can't just have a sore neck anymore, I always will have stroke symptoms on my mind - man I hope that goes away, I have a long life yet to lead to worry constantly about a second stroke (35 on last birthday). I called Bob and let him know that my neck was sore but I was so sure that it wasn't stroke-related, that I went to bed only in my undies. He knows that if I was truly concerned enough to call 911 that I would wear full clothing to bed :big_grin: . I told him that if I have any symptoms of TIA (transient ischemic attack) today, then I would call 911 immediately, call him, and we would not start a family. I'm wigging out just a bit still. It doesn't help that my heart surgery was just scheduled for August 25th. For the love of god, I always considered myself to be healthy. Dangit! I'll keep updating with new/different information.

Thank you, Jean - that is just what I was attempting to convey.

Holy cow - I live in Orlando and didn't know we had hyperbaric treatments here, darnit! Tons of luck to you - I am crossing my fingers tightly that you get the best of results for your hbot and stem cell treatment. :Clap-Hands:

Ahhh...Alaska was beautiful...& cold! We flew into Anchorage and spent some time downtown - it was very pretty with baskets of flowers hanging from lamp posts. Then we took a bus to Whittier, AK, very quaint small harbor town. We walked around quite a bit before getting on the ship. We enjoyed the "small town-ness" of it all. Two days at sea = boring! I read lots - thank you to Pam & Lisa for the book recommendations - I read Suzanne's Diary for Nicholas (5 stars), The Red Tent (5 stars), and Helter Skelter; regarding the Manson murders in the late 60's in California (4 stars). Poor husband felt ignored but it lent itself to a perfect vacation for me. Skagway - wow! We actually went on a hike. The description was "...2 miles of uneven ground followed by a float down the river..." UNEVEN GROUND??? How about 1/2 mile up an ascent of 300' and 1/2 mile of descent with rocks and roots to climb over. The guide had my left hand, Husband had my right hand and I still fell twice! The remaining mile was on very easy ground. I felt so incredible after such an accomplishment (more on this later). Juneau - whale watching. We saw plenty too. Humpback whales engaged in cooperative feeding. What an amazing sight. It is sure to make anyone feel very small and insignificant in the grand scheme of things. Ketchikan - We took the walking tour and boy oh boy did we walk plenty. About 6 hours worth. It really tested my stamina, strength, and balance. Up hills, over bridges, small sidewalks. One day at sea, not as boring as I left the books behind and we played giant checkers (the pieces were a foot in diameter) and shuffleboard, and ate of course. The trip really taught me a lot. It showed me that only *I* hold up my progress. I wanted to quit so many times during the hike or walking due to strain and fatigue but I kept going because I knew that I wouldn't see this again anytime soon if ever. That and shame and embarrassment are great motivators. :big_grin: I am trying some constraint induced therapy today - using crutches with all of my weight on the 'bad' leg. I know it is good for me and I will keep it up for the remainder of today but it is more exhausting than I could have ever imagined. It took me almost 1/2 hour to get from my car to my office & I was sweating. Since returning from the trip, I have realized that I need to change the way I think about myself and my progress. Despite anyone else's progress or limitations, I have made as much progress as I possibly can for me. I need to keep testing myself and challenging myself. I have an incredibly difficult time communicating this much less recognizing it for myself; No matter how helpful this website has been for me, & it has been fabulous, I need to limit my time here. I find myself getting 'down' on myself and thinking of myself strictly as a stroke survivor. I am more than that. We are all much more than survivors or caregivers. I have gained so much information and support here, but it is time now for me to back off and visit less. Not that you know me, but I feel as though I know you & I have gotten to enjoy you as such a good friend of mine. Take care, you. :hug:

I recently received an email from a relative to whom I haven't spoken in quite awhile and she asked how I have turned the stroke experience into a positive. I am extremely flattered that she thought I could. I found the question stimulating and turned it over in my cranium for awhile. Disadvantages :yucky: : - A stroke is stinkin expensive (hospital, rehab, meds, etc.)! - Being paralyzed is worse than it looks. - The blow to self-esteem is severe and the fight to get it back is brutal. Benefits (for lack of a better term) :hahaha: : - Didn't know it was possible, but it brought Bob & I closer together. - It turned me toward acupuncture and I love it. - It gave me a new appreciation for automatic transmission vehicles, although I still like my current ability to drive my manual 5-speed. - For all of my life, I have never wanted to have children (husband & I concurred), the stroke had made me reconsider this decision. Trying to convince husband toward the possibility had been rough going! Miscellaneous column : - For better or worse, I am a more laid back driver; calmer. - I give people more 'slack' than I used to. Is that good or bad? I guess it depends on what side you are on!

:congrats: Good for your husband and good for you for not stressing about it. I'm so happy for you!

~Psst, hey - Pam, Dontcha think Sue is beautiful?~ (I hope Sue didn't overhear that!) :big_grin:

I agree, Pam - It was a huge disappointment to me. I have enjoyed his work past It (Rose Madder, The Green Mile, Everything's Eventual & Delores Claiborne). Thank you for the recommendation!

I don't know if it is due to my meds, but I have been having the craziest (and most entertaining) dreams in some time! A week ago, I dreamt that a good friend of mine (a stewardess) was in the girl's restroom (I rather expected him to be there, too!). On my way to the restroom, I saw my previous advisor/professor. While walking past him, he made a comment that I didn't catch. I turned around and asked him if he needed anything from me. He walked up to me, sniffed me, and then said no. I resumed walking to the restroom and found that my friend occupied the body of a coworker friend of mine (also male but didn't expect him to be in the restroom...). It turns out that he was directing a fashion show in the bathroom and instructing the women how to walk and whatnot. What fun! :Clap-Hands: Last night, I dreamt that my cousins from California had come to visit us in South Dakota (a regular occurrence in our childhood). We were all adults and having a good time in the basement just BSing and whatnot (also a regular occurrence in childhood) and my cousin Diane had brought a friend of hers - Madonna (the singer). It was a rather jolly good time! :giggle: I recently finished reading Stephen King's book 'The Stand' - wowzer! I was so immersed in the story. He has a fabulous way of providing rich visual details although I am usually disappointed in his endings. I thoroughly enjoyed this book and just didn't want it to end (odd, considering it was 1153 pages long!). Any recommendations for reading? Hubby & I will be celebrating our six year anniversary (although we have been together for nearly 20 years!) next week with a cruise from Alaska to Vancouver, Canada. I will need some reading material but am so excited as neither of us have ever been on a cruise before. :cocktail: I look forward to your feedback :big_grin:

I really liked her webpage - it has a 'hard' and 'rough' artistic feel to it. You are lucky to have such an open relationship with her (lucky for you and lucky for her).

What a rotten day, Lisa. It can only get better from here, right? (just nod happily and ignore all of the millions of things that you are thinking right now that could go wrong - power to positivity!!) :big_grin:

Thank you!

I had a nightmare last night like none I have had in a long time. I was standing before my dissertation committee in my final defense for my Ph.D. and while my committee members were discussing a few topics amongst themselves, I had another stroke. This one was severe. My face was paralyzed and my whole left side went out. As I was laying on the floor of the conference room, I kept trying to say "call 911" but it came out distorted thanks to the paralysis and no one heard me or noticed that I had fallen. I felt so extremely scared, vulnerable (reoccurring feeling for me since my stroke), and upset at my committee ignoring me. I told my major advisor about my dream and, thankfully, we laughed about it. There are no words to describe how lucky and happy I feel with having him as my advisor. He is understanding, intelligent, compassionate (sometimes to a fault...), and everything that my two other advisors weren't. :big_grin: My hubby and I rode our bikes to my work on Sunday to assess my ability to handle it. (This is where Reality rears its ugly head) It was about 5-6 miles each way and, amazingly, with a headwind the whole time (now I feel like my grandpa who walked to school uphill both ways!). I fell once and was sweaty and pooped out. I need some practice before this is something I can do on my own. I was a little frustrated with my inability to accomplish this. It is something I used to be able to do on a daily basis...BAH on me! Like many other stroke survivors, the only 'normal' person that I can compare myself to is my 'prestroke' self and I consistently fail in the comparison. I don't have the energy, zip, drive, grace (although my husband will say I didn't have grace before!) or feeling of what I used to be. I totally and completely realize that I am creating a new me, I just don't really like the new me so much right now. I will give it more time (7 months today).

Went for MRI / MRA and....(drum roll, please)... First good news: they didn't drop me on the floor this time! Second good news: after pushing the IV needle for the contrast *through* the whole vein and squirting pretty blood everywhere, they backed it out & it worked! Third good news: Dr. Humorless (neurologist) showed damaged area of brain shrunk and artery is healed. Hence Fourth good news: I got off Coumadin!! although now I'm on Aggrenox for 6 months. Leading to Fifth good news: I can eat greens and veg oil now!! ULTIMATE good news: I can drink alcohol - I can't have more than 3 if I drink every day, so I may have to cut back a little :giggle: but - I GET TO DRINK!!! :cocktail: oh yeah - pass the shiraz my way! Now that I am less likely to become a bloody (literally) mess if I ride my bike, I may start riding my bike to work (5 miles or so, in flat florida) with hubby's agreement :friends: Yippee! Oh, I need to make it clear that I probably can't dance just yet...so it is a mental happy dance.

I really like made-up words. My dad says things 'in all seriosity' his reasoning is if you can be curious and ask something in curiosity, why can you be serious and say something in seriosity?! I got my Masters degree at the State University of New York at Binghamton and one of my fellow classmates used to 'dilemmanize' over situations, 'I'm dilemmanizing over...' I liked how it turned into a verb. Before I came here, I never knew that 'stroke' could be used not only as a noun, but also as a verb, adjective, etc. - awesome! ------------------------------------------------------------ :cocktail: Every so often, I think to myself: Oh My God I Had A Stroke. I HadA Stroke. IHadAStroke! IHadAStroke! IHadAStroke! IHadAStroke! And then it just runs all together into a freaky realization that I survived one of the top 3 killers (heart disease, cancer, stroke) and I am amazed. ------------------------------------------------------------ :beer: When I first got out of the hospital, I was still out of it in a very weird way - happy, ignorant, bland. Then I started to wake up and notice how much I have been affected & how different my life is, how different I am from my old self and everyone around me. I was bitter and threw plenty of pity parties for myself while my dear hubby didn't know what to say or do. I'm better. I'm no longer ignorant or bland (and mostly happy though). The bitterness has receded. Slowly. I realized today that I no longer want desperately to trade places with other people, I don't feel AS different as I first did. I still feel incredibly vulnerable physically and mentally. I used to run and it made me feel more prepared, for what I don't know, but I felt as though if someone were to start chasing me, it would at least take a leetle bit longer for them to catch me (not much, but a leetle). I can't run yet. It makes me feel weak and exposed. My thinking is slower, I wonder if people have scammed me because I may be clueless... ------------------------------------------------------------- :im stupid:

I'm sorry you were sick - yuck! Good thing you had a caregiver-in-waiting, sounds as though it went as smoothly as possible. I would have loved to see your and Tori's dancing skit, sounded like a blast! :roflmao:

:Clap-Hands: Rock on! You are more than just a 'survivor,' you are a thriver! :beer:

:bouncing_off_wall: Congratulations! That must feel great!

Although we never know what we would *really* do until we are faced with a situation, I truly believe I would have yelled at them like a mother would (especially if I knew them AND their middle names!!). Too much psychological research shows that people would not do anything, especially in groups. This isn't to say that the situation doesn't upset or bother the person driving away (fight or flight).

You are so encouraging - thank you! - I really needed that today

I have tachycardia, which, directly translated, means fast beating heart. Usually the episodes last for around 10 minutes and my heart beats over 200 beats/min. I had an episode recently, while I was on Coumadin and it hurt like all heck so I went to a cardiologist to see if my thin blood could be contributing to this issue. Cardiologist did not like that I had chest pain and my heart is beating faster than 180 bpm. He thinks that it is a fatal type of tachycardia and needs further tests to diagnose this. As I was speaking to him, I mentioned that a previous cardiologist (prior to stroke) said that one way to stop the tachycardia is to 'bear down' to put pressure on the vagus nerve to stop it. I told him that at the end of Sept 2005, I had a tachycardia problem and really 'bore down' hard to try to stop it - my heart was beating at 240 bpm (I had an exercise heart monitor on). He said that most likely, the effort of exessive bearing down caused the dissection in the carotid artery and caused the stroke. Great - I caused my own stroke... So now, I have to go in for a stress test tomorrow (2 1/2 hours..ugh!), and an EP study in which they insert a catheter through a vein in my groin and map out the electrical circuit of my heart to make an accurate diagnosis and then have heart surgery to correct it. Frankly, this is freaking me out a little & ticked me off too - I had been informed of the surgery 2 years ago and if I had done it then, I probably would not have had the stroke. :Tantrum:

Hubby and I decided to just hang out together last night and he suggested a bike ride - each with our own bikes!! I said we could ride to the park which is about 4 miles round trip and he seemed up for it. As we started out, he saw someone he wanted to talk to so he said he would catch up with me. I was riding happily along and knew that I had to pedal up and over an overpass - I DID IT! I was grinning so wide that I had to stop and pick bugs out of my teeth. :big_grin: Once I got to the park, I started wondering what was taking him so darn long and I decided to just turn around and go back. As I was clearing the overpass again, I saw him driving by looking for me. By the look on his face, all I could think was "uh oh, dad's mad." When I got home, I was on :cloud9: with my accomplishment. As soon as I walked in the door, I got about three earfuls of yelling about responsibility, worry, etc. etc. At first, I felt like a petulant child, but then I took a good, long look at his red face and saw the worry and fear that he experienced. I apologized many, many times. Once he accepted the apology, I said, you're impressed too, aren't you?!! He congratulated me and warned me not to do it again. He sure does love me. Who else would put up with me?

I have been semi-successfully teaching my affected side some new tricks lately. For instance, my left hand can now brush my teeth (yeah, yeah, it's an electric toothbrush!) and it can blow dry my hair (though I never fully blow dry my hair, just get the wet out). I am trying to teach my left foot to walk more on the instep to strengthen the ankle muscle but I have not been successful at this whatsoever. I am trying to train my brain to focus and pay attention more, wait, what was I typing? Oh right - yeah, that is going just so-so. :big_grin:

Yesterday, May 13, 2006 was my six month "anniversary(?)" of my stroke. I decided to make a timeline of this experience. Start of November - migraines with blindness 11/11 - TIA at work, visit doctor had "normal" CT scan 11/13 - TIA at 10k starting line, stroke during nap 11/13 - 11/16 - ICU 11/16 - 11/18 - regular hospital 11/18 - 12/1 - rehab hospital (released from hospital on Dec 1st) 11/18 - moved finger - arm came along slowly over the next week 11/20 - dressed myself 12/12 - started to drive automatic transmission (shouldn't have driven so early, attention span too short) 12/24 - no more quad cane, wanted to walk for Christmas walking *slowly* improved (still improving) 12/25 - rode tandem bike with hubby 2/15 - rode own bike for a *very* short ride (leg kept falling off pedal) 3/13 - stopped physical therapy - no more visits left 4/1 - started to drive manual transmission (my own car, finally!) 4/25 - SKIPPED! 5/6 - attempted to jog (very ugly and uncoordinated) 5/10 - attempted step aerobics video (still ugly and uncoordinated) I know that when I look at this list, it seems that I have progressed so far and so fast, I wish it felt that way to me - doctor says that age and health played a large part. What will my 1 year look like? What I feel now: Frustrated at my lack of coordination Scared that part of my brain is dead. gone forever. never to return. Terrified at what life will bring at me next. What other health issue will we address? Will I ever graduate with my degree? What will I do with my life? What kind of meaning will my life have to me? to others? To review November 13, 2006 - Stroke woman

"Pity party for one?" I am having a heck of a time remaining positive anymore... I get ladened with thoughts and feelings of bitterness that I have to recover as best I can from something I spent most of my life trying to prevent (watched weight, BP, ate healthy, exercised, didn't smoke, etc). Dang it all - I practically preached a healthy way of life. I come from a long line of regreters & I admit that I regret that I didn't take full advantage of my health the way I should have AND of course I regret not going to the doctors sooner and demanding an MRI when I first went to the doctor with the TIA (transient ischemic attack). Bloody H-E-double hockey sticks! pity party over and out.