justsurviving

Totally didn't notice that the link was incorrect. www.istroked.wordpress.com I have blogged here for ages, I know the difference between Draft and Publish. It was frustrating and long and frankly not worth the aggravation. Plus (big bonus) I can say the big S and H words (instead of dookie or whatever). ha!

I have a new blog - http://en.wordpress.com - mostly because I find this site restrictive and often frustrating when trying to post. For instance, my latest blog posting never showed, after hours and actually days of trying to post it. We'll see if this one makes it.

It is okay to feel the feelings sometimes. Please let yourself just wallow in them for a set amount of time. Let yourself really delve into that bitterness, anger, and frustration. When your time is up, make a plan. Yes, you are brain damaged, big deal - so am I. That doesn't mean anything if you fight for what you want back. Brain plasticity means that the brain cells that controlled your arm/leg/whatever are dead, but that other cells can pick up that function - you have to teach them. It is a long process. This is a marathon, a triathlon - not a sprint. Measure out your energy and make it last. You can get whatever function you want back. You are young and can retrain other brain cells to pick up the slack of the dead ones. You can do this!

I, too, have a Kindle (I had the original and now have the 2). I'm in love with it! I just ordered the book you recommended & look forward to a good read. Thanks!

Just recently, I have had a few simple, possibly cheap, realizations. I asked a good, kind, honest friend if he noticed any personality changes from B.S. to A.S.S. (Before Stroke to After Sherri's Stroke). Being the good psychologist that he is, he said that he noticed slightly flattened affect (less visible emotion). After thinking about this intently, I realized this morning that it is because I have always analyzed a situation before I determined emotion. This usually happened very quickly so that it wasn't as noticeable. The reason that I do this is because, otherwise, my first immediate reaction is of anger or unhappiness, even if it is a good situation. I need to determine that the situation is good first. There are plenty of reasons for this reaction, none of which I would like to delve into right now. Suffice to say that I feel my reasons are just and it is a habit that I don't think I could, or would want to, break. Anyway, I think one of the reasons for the flattened affect was because I simply didn't have the mental resources to analyze and determine the correct emotion. I was too busy checking systems (I still have to move toes and fingers to reassure myself that I am not stroking again), and checking to see where my limbs are since they are so unused to just being (proprioception was lost for some time) especially with the new brain cells that were controlling them. I was relieved to solve that observation. A new one has popped up. I am reading a good book and really connected with the something the character felt/said. He had a drive that was unstoppable for most of his life and he recently noticed that he had recently resigned to his current state of being. I hate that I have, in some sense, resigned to the stroke. I kept up the fight - believing that I can fight this and ultimately win - for so long. Honestly, fighting with that level of strength for ~3 years is above and beyond exhausting. I haven't given up. Rather, I have lowered the level of fight to a more manageable level, and to be honest to myself, I have reduced my expectations. That hurts more than anything else. In some way, it is like reserving your energy during a race. You need to push yourself at a level that you can handle until you see the finish line in sight, then you run like H E double hockey sticks. I hope that is what I am doing. I can't see far enough into my heart and mind to determine if that is true just yet. I hope so.

Apparently 'chemo brain' is well-documented and common with cancer survivors. Hearing his story really made me understand what others felt when I stroked. I felt so utterly helpless and awful. When you are the person going through it, it is bad enough, but there is a sense of ownership (for lack of better word - brain damage!) about it.

I went to a conference last week in Orlando. I also went to the first attempt of the Ares 1-X launch. Yes - attempt. Friend of Survivor and I waited for 5 hours & no launch that day. Foiled again! It did finally launch the next day when I was in conference mode. While I was in Orlando, I got to catch up with some of my favorite people. In addition to the launch adventure, Friend of Survivor and I had a wonderful dinner with her mom. Two of some of my most favorite women - they really crack me up with their unique relationship and perspective. I also took advantage of visiting with another friend, Chemo Brain (his term). Over lunch, we delved into some of the research issues that I have been battling. The thing is, when I look at the issue with the same pair of eyes, it always seems to look the same and mock me endlessly. Chemo Brain made some very thoughtful suggestions and made a Regression analogy to my recovery. Clarification - he says Chemo Brain whenever he can't find a word. He had the most horrifying experience with cancer, chemo, and recovery that I have ever heard. That he is a fighter and survivor is a given. Parts of lunch were very much "When I was in the hospital this happened." "yeah, I totally know what you mean - I thought/felt the same thing/way" It was neat to connect in that odd way. Never a comparison so much as a companion of survivorship. I am very thankful to have such intelligent and compassionate people in my life. Meanwhile, back at the ranch, the Nigeria experience is 1/3 of the way through. Bob has been there forever and will *hopefully* be home on December 23rd. Skype really has been our savior. It is so good to see him, although the high-metabolism stinker usually fidgets into a pixellated blur . Nothing else new on the homefront. The book project has yet to take off - my home computer is a netbook with a teeny-tiny keyboard. I need to get set up so that I can plug in a regular computer keyboard and whatnot. Eventually. Everything is eventual.

You prove my point, Carol!!

As of late, I have been processing the realization that I am still waaaay too bitter about the stroke still. Now that I have recognized it, it is time to change it. It is reflected in so many of my posts and in my life. I honestly don't know how Bob has put up with it. I'm sure he has justified it as something he didn't experience and that I will 'get through it' so to speak. Actually, I haven't asked him about it. I don't think I want to know the answer. I think that some people give me far too much leeway (Bob, Friend of Suvivor, family, etc.) and some don't give me an inch (I have experienced the 'you must not have it too badly if you can walk/talk/whatever'). I need something in between. The place where it is okay to be scared to do some stuff, but do it anyway with encouragement. I think I am the only one who can provide that place for myself. Why would I think it is anyone else's responsibility? To deal with the bitterness issue, I have decided to volunteer at the local hospital. I plan to ask if I can volunteer with stroke patients. I plan to create a pamphlet/brochure with information that wasn't given to me when I left the hospital (sleep is very important, no stroke is the same & I am not a representative of all strokers, you have the right to be respected as a patient and survivor, etc.) and to lend an ear and give encouragement by example. I think this will be a good step toward being thankful and simply accepting my situation as is. I truly haven't accepted where I am right now and how I got here. So, you ask, why the "Bitterly thankful" title? I realized late last night that I am thankful for the stroke for at least one thing - I used to have a terrible, awful itch in my left foot - about 2 inches down the center and it would bother me endlessly. I no longer have that itch! Woo! A video tape exists of me scratching furiously at my foot at a phantom itch. No reason for the itch, but it was a deep, beyond bothersome itch. I used to fantasize about taking a steak knife and plunging it into my foot. The only reason I didn't is because it would be my luck to still have the itch and top it off with pain and then being unable to scratch it! So, I am on my way to simply being Thankful without a side of bitter. No telling how long it will take or how many mistakes I will make along the way. I do think I will get there though.

Bob & I are getting settled really well in the new house. Bob decided this was the weekend to paint the kitchen. Somehow, I had enough other things to do that I got out of that! One of the tasks was to (finally) organize our bedroom closet. I attacked it with fervor! As I was finishing up with the shelf and hangers, I found the running t-shirts from the November 13, 2005 10k race. I had a TIA at the starting line of that race and stroked a few hours later. I didn't expect to find the shirts and they were so carefully folded and my running number placed with them. It really surprised and shocked me. Even more surprising was the onslaught of emotions that resulted after the find. The shocking difference of November 12, 2005 and November 13, 2005 really hit me hard. How I so blatantly disregarded the TIA at the starting line. How I tried to convince Bob not to call 911. The pain and utter loneliness of the first few weeks of recovery. The passive thoughts of suicide (passive thoughts of suicide = wishing I hadn't survived; active thoughts of suicide = planning or thinking about upcoming death). A colleague really helped me through that last part. He said "I'm so glad that you survived." Much like myself, he is rather blunt, but honest. That helped more than he knows - thanks, Thomas! I actually just had to stop organizing the closet to get out of the confined space and sort through my feelings. I didn't get back to it and I suspect that I won't for awhile. I have to calm down for a little while before I can tackle it again. Sometimes reality really smacks you upside the head, doesn't it?

For every shuttle launch, NASA Langley employees are offered the opportunity to see the launch from on NASA Kennedy's center grounds. For the STS-128 night launch, I got a pass to go. I could take 6 people with me so I asked Bob, Friend of Survivor, and Bob's sister to see if they wanted to go. We filled up really quickly! I would have loved to take a full bus but am glad, now, that I didn't. We got to the causeway (right across the water from the launchpad - beautiful view) at 11:00 pm. Then we waited since it was scheduled to go at 1:36 AM. Then we waited again. The weather was really getting bad, but we were trying to optimistic those clouds and that lightning away. It didn't work. The launch was scrubbed around 1:20 AM Tuesday. The 2 (TWO!) hour drive back to our vehicles only took about 45 minutes before. Bob & I didn't get back to our hotel room until around 4:00 AM and check out time was 11:00, so we only got about 5-6 hours of sleep. The launch was rescheduled for ~24 hours later (1:10 AM on Wednesday) so Bob & I decided to spend another night and vacation day to try again - everyone else was on board as well. Just our luck - that launch was scrubbed as well. At least we found out at 7:15 PM instead of late at night/early in the morning. We called everyone to cancel (another good thing about the limitation of guests) and decided to drive back home that night. 12 hours later and we got home at 7:30 AM on Wednesday. Not wanting to burn vacation time, I went straight to work. Eight hours of a boring task in a warm room made my day hard to live through. I am so glad that we decided not to go since the launch is now scheduled for Friday (we aren't going). It would have been neat, but I'm okay not being able to experience it. Bob & I have seen quite a few launches from afar as well as really pretty close (on a jetty close to NASA Kennedy) when we lived in Orlando. I was really worried about the lack of sleep schedule that I have trained my mind and body to adhere. No problem for the most part. Bob & I need to clean up our sleep hygiene to get back on track for good daily rest, but my brain handled it really pretty well.

Doc visit today diagnosed the syncope (fainting) as vasovagal syncope. Apparently common for those on the toilet. A little embarrassed!

I had to pick Bob up from the airport at 1:30 am Friday night/Saturday morning. We got home and settled in around 2:30ish. I couldn't get to sleep and wasn't feeling great. So, I decided a bathroom trip might help for some reason around 3:30 or so. Sitting on toilet, doubled over thinking 'I don't feel so good'. That was all the warning I got - I woke up on floor. Apparently I passed out while sitting on the freaking toilet - took a face plant into the wall/floor (not sure exactly what happened). Actually started dreaming and felt uncomfortable from having my neck wrenched. I started to move to get more comfortable not realizing where I was. Very confused why the bed was so hard and I had no pillow. Realized I was on the floor. I tried to push myself up & my butt bumped against the toilet. It started to crystalize what happened but I just got up & went to bed. DH comes to wake me up and sees a goose egg above my left eye and a huge scrape from just above my right eyebrow extending into my hairline. Oh, it's beautiful! I am easy to pass out, so we don't think much about it. But, I'm too dizzy to get up before noon. Actually, before 1 pm. We justified it since I really didn't get to sleep until 4 am or so. We go to eat & I'm feeling good, no problem at all. We leave & about 1/3 of the way across the parking lot, suddenly, I can't walk straight. I am listing to the left. DH has to help me walk to the vehicle. I felt no weakness, just felt like I'd been spinning in a circle and then trying to walk straight right after spinning, you know? It freaks us out & we go to ER. I get a CT & a CT with contrast. Good news: The carotid and vertebral arteries are widely patent without evidence of stenosis or dissection. Yay! Weird news: Tiny left thyroid cysts or nodules suggesting minimal changes of goiter. What? I have a goiter? Man alive. In the end, the ER doctor said that the disturbed gait may have been from the head bump. Anyway - all is well. I may have a little vertigo, but that is nothing new for me. I follow up with my regular doctor tomorrow morning. I have a slightly swollen forehead (I look very Cro-magnon) and a scrape that is healing well.

I hope the mirror box helps you as much as it helps people with amputations - good luck and keep us updated!

Has it really been three months since I completed the USC (University of South Carolina) IMT (Intensive Mobility Training) study? It really has. Looking back, I've done a lot since the study - I now "run" on a regular basis, we moved (although my father-in-law helped with the heavy stuff), & I feel better about my walking and stair climbing. I worked four 10-hour days so that I could have the Friday to drive to Columbia, SC to complete the follow-up portion of the study. The measurements were the same as the baseline, pretest, and posttest &, although it was my intention, I didn't practice the parts that I felt I needed practice on (you know what they say about good intentions!). On the drive there (6.5 hours there + 2 hours for the study + 6.5 hours back = a long day!), I was chatting with my dad who broke his wrist a year ago. He was lamenting his loss of movement and actually said to me "I sure hope you kids don't have major medical issues." I was without words. He compared a broken wrist to a stroke (or forgot completely that I had one? I don't know, I didn't further the discussion, I was too speechless). Good thing that I love him and understood where he was coming from, otherwise I may have given him the whatfor! Eh, like most people (myself included), he just didn't think about (1) what he was saying and (2) who he was saying it to. Anyway, we get there in time to have a lovely lunch before the follow-up. When we got to the lab, I didn't get to see my favorite PTs, but I saw a few friendly faces. I felt pretty darn good about my follow-up capabilities (I have the record distance of the 6 minute walk! Woo hoo!!) and the researcher complimented me on a few things that I had begun to notice but hadn't been able to articulate just yet. He said that my strategic planning of gait is really good. I think that, more than anything, the improvement is due to an increase in confidence in my ability to do something. Instead of analyzing a task to determine if I would be able to do it, I am more likely now to try it first rather than analyze it to death. He also said that he may use my youtube video of my "running" as an example of what can be accomplished with intensive therapy. I truly recommend the study - they have ongoing studies at USC for stroke survivors & this is just one I happened to hear about. Totally worth it.

dstraugh - thanks! The unpacking will be slow and deliberate. The kitchen is in the middle of a remodel. fking - I don't have a limp any longer but I do get tired when I run (building stamina!).

Weird. I didn't intend (nor do I see now) negativity in my post. I also didn't compare to old me.

I think I'm getting stronger. By "running" for 30 minutes, 3 times a week, I feel strength building in my ankle and leg in general. Then comes moving day. My leg threatens to give out several times (once at the top of the stairs while holding a heavy box - yikes!). Walking up to the 3rd floor apartment and down with boxes, bags, and miscellaneous things and driving to the new house and walking up a flight of stairs to put boxes, bags, and various things in the office, extra bedrooms, and our bedroom only to trudge back down the stairs to carry more wore me out beyond explanation. I think I am S-L-O-W-L-Y building stamina, but jeez, I would like more and faster please! When I get worn down, I have more slow or false starts. It takes longer to think about and then take that first step on the stairs, whether going up or down. There is something so lonely about being a stroker - when you're the only person who has to think carefully about how to navigate across a room, well, there's a sense of solitude to the whole thing. So, in the end, I *do* think I am getting stronger, but is sure as heck is slow. ~readjusting expectations...AGAIN~

As a continuation of the previous post - I said that I used to need to secure my affected limbs but that, basically, I didn't need to do it any longer. Oops. Spoke too soon. About 2 weeks ago, I realized that I still need to secure my limbs, but I think it is more habit now or, at the very least, I'm just not as conscious of it. Bob & I were riding in the back seat and I had to sit in the middle between Bob & my dad. Bob was on my left (affected side). If I can't angle my foot so that I can balance my leg, it pretty much kind of flops a little. Finally, after getting frustrated with trying to fix it, I just took Bob's leg and shoved it against my leg so that it was supported. Part of it is the stabilizing muscles. The muscles that hold your leg up when you are sitting on the floor with your back against the wall and your legs bent. You can release the major muscle and allow the stabilizing muscle to keep the leg in place. Paralysis messes that all up, doesn't it?! When I was at USC for the study, I suggested they look into how to engage the stabilizing muscles. It was clear that they didn't really understand what I was saying and I just dropped the issue. Over the July 4th weekend, Bob & I flew to South Dakota for my grandmother's 90th birthday celebration. She's quite the firecracker yet. When I teased her about keeping it up for the next 15-20 years, she just hushed me! It was so nice to be home. The balance between quality and quantity of time with family and friends is a delicate balance, and one that I'm sure that I never quite accomplish but I got to meet the newest niece and distant new family members as well as old faces that are so welcoming. I also got a chance to spend (far too short) time with a good friend from high school (hi Kris!). We enjoyed chatting over a couple glasses of wine. The fact that she and Bob had to help hold me up when I had to put my shoes on at the end of the night - Bob wants to blame it on the wine. The real me is afraid to blame it on my continuing balance problems. I won't dwell on it since it would ruin the memory of the lovely evening we had. One of the topics of conversation really got me interested. Kris said that it seems as though our bodies age but our minds feel like no time has passed since high school. I think that, right now at least, I'm aging backward a little. When I first stroked, I felt 80 years old (not that I know how that feels, but go with me on this). As I am gaining strength, I feel younger. I hope that I will be my actual age by the time I hit 40! On a related note, BS (before stroke), I used to feel very secure in aging. I liked the idea that I would age and wrinkle and gain life experiences. Now, however, it scares me & I try to freeze the age I am now and I long for my early 30s. It is too hard to put into words. I hope to release this fear in the near future. I am keeping up with my "running" program. (I put running in quotes because it really isn't running by any stretch of the imagination but it is all I can muster so I am giving myself artistic license!) I am running 1/3 of the track and walking 1/4 alternating for 30 minutes three times a week. Next week, I will be running 1/2 the track and walk 1/4-1/3. Increasing the increments slowly has been working really well. The increased ankle strength has surprised me. I also feel more energized which is a great feeling! Who knows, maybe I will actually come to like running (I never did before)! Lastly, we have finally purchased a house here in Virginia. It was a foreclosure so we had to buy it from the Veteran's Administration which was a pain in the tuckus. They gave us fits up to the last minute but we prevailed! We will be moving in at the end of July. Thankfully, Bob's dad is flying here to help us move - I don't have that kind of strength and endurance just yet! Until then, we are working to get stuff done while we aren't living there - the flooring in the kitchen, foyer, and hallway needs to be replaced and we are updating the kitchen with some paint and a new island that we are building! I still tire quicker than I used to, but I am building up my endurance. That's the news from Virginia. And South Dakota, too, technically. I hope all are enjoying the summer.

A friend who read this entry but is not a member emailed the following comment to me: "I just caught up on your entries. It had been a while since I read them. It is really interesting to hear about your inner life, and as one who is not nearby, to hear about the continuing struggle with stroke recovery. My ex-father-in-law had a massive stroke in his fifties, and my aunt had a stroke in her late forties (I think) so I am not completely unfamiliar with some of the effects, just not the level of detail you have provided. It is fascinating and helpful to those of us who cannot begin to imagine what it is like. I think sometimes we forget or are oblivious to (obviously) the brain-damage or invisible side of the equation and look just at the physical impairment. Thanks for sharing such personal and perhaps vulnerable thoughts and feelings with the rest of us. Would you mind if I pass along the link to others? By the way - would love to see you guys again, so if you're ever near Raleigh, please drop in!!! And I'll be cheering for you to reach all your goals."

It never fails - I think I have just about everything figured out & then BAM! I get hit with something and have something to refigure. I had a pretty sweet life up to the stroke. I was fit, healthy, and on my way to finishing up schooling. BAM! Stroke. I often wrote and felt that I had aged 50 years in the blink of an eye. I think I understand why now. I had some disconnect with my mind and body. BS (before stroke), my mind and body were in sync. What I thought I could do, I just did. Without fail. All of a sudden, I thought I could do things that I simply couldn't do. No way, no how (walking, grabbing things, etc.). It is incredibly difficult to convey how this dissonance felt. I thought I was still healthy and fit. I simply couldn't get my mind to sync up with my body. It was impossible for me to understand that I was broken. I think that I realized it in small patches (one sad memory was of me sobbing uncontrollably and asking Bob to please just take the stroke effects away, just for 1 day and I promised that I would find the strength to fight it if I could only just have a break), but I couldn't really make my mind understand what my brain did to my body. Only time would allow the two to make that connection. I realized last night that it is coming together. My mind is accepting my body. I recall having a lunch date with a good friend (Friend of Survivor, in fact!), and as we sat in a 2 person booth, I had no idea what to do with my arm. This disconnect between my mind and body manifested itself frequently in the feeling that parts of my body didn't feel like they belonged. At lunch, I crossed my arms so that I could control my affected arm. I felt terrible as I'm sure it came across as closed off body language, but I just didn't know what else to do with my arm. At least I could simply tuck my affected leg/foot behind my good leg/foot and be okay with it being secured. I feel fairly whole now. A portion of my affected foot often feels odd and 'out of place' (for lack of a better term) but since it is connected to the rest of my foot which feels fine, it is easier to deal with. I feel like my arm and leg belong to my body again. I'm sure much of this has to do with the brain cells that have to pick up the responsibility of the dead cells. The new ones have no basis to determine what feels comfortable or appropriate. Only as time passes do they figure out how it is supposed to feel. When I would get frustrated at the experimental program at USC, I would have to stop and explain that it wasn't that I didn't *want* to do something (as one person claimed that 'some strokers don't want to do' stuff), it was that my brain didn't understand what was right and how right felt. There was frustration on both sides. There were some people who think that I just wasn't cooperating and I felt frustrated that my brain cells weren't picking it up as fast as they needed. I feed off other people's stress which is NOT healthy! If someone is anxious, all that energy is absorbed and I become anxious. Yuck. The good thing is that if someone is contagiously happy - I am too! I once told Bob that my brain is figuring things out similarly to a fresh one (babies/kids), only a little faster. I often commiserated with toddlers learning to walk. I figure that (similar to muscle memory), my brain is catching on fairly quickly and I'm past adolescence (whew! I felt awkward for awhile after the stroke - very teenage-y). Glad that is over! I'm getting better & believe with all my being that I can get to a fully sync'd up place in life. Just you watch!

My BP was 84/60 when I had woke up and had rested for awhile - they decided that I was good to go. Ugh!

Lots of stuff happening lately... I have been doing really well on my exercise schedule & even added to it! I am doing the Couch to 5k program (www.coolrunning.com under the Training tab and the Beginners section). Bob & I either bike or drive to the high school track and do the walk/jog alternation for about 20-30 minutes. The weather is starting to cooperate better and when it is warmer, the heat helps warm my muscles. The cool/cold weather makes me a miserable walker/jogger! ---------------------------------------------------------------------------------- Bob & I bought a house here in VA! It is a foreclosure that is in pretty good shape (we will have the inspection done tonight) and we got it below market value which is always good. I'm pretty excited about it - I can't wait to move in and actually unpack *all* of the boxes. I have had boxes not only lining my closet but also stuffed in our extra room for the last 7 months and it is a pain. ---------------------------------------------------------------------------------- I gave blood yesterday at the blood drive here on center. What a mess that was. First, I had the most incompetent person taking my information. I had to spell everything 3 or 4 times (even easy words like Clair and Circle). I wanted to strangle her by the end of the intake portion and when they took my BP, I thought for sure that it would be sky high because I was so bugged. Instead it was 98/64 which is really low for me. After I sat in the chair for the blood draw, the phlebotomist stuck the needle in sooo s-l-o-w-l-y that it burned. I finally told her to hurry up and just stick the darn thing in already. I squeezed that stinking ball continuously so that I could just get the heck out of there. I filled it faster than I ever have before (~6 minutes) and as she pinched off the tube, I told her that I feel light headed and a little faint. She didn't really seem to care and told me to cough (no tipping my chair back or juice or anything). I was too weak at that point to try to cough and just fainted dead away. I fainted so long that I was actually dreaming. Someone was tapping on my arm to wake me up and I was annoyed that someone was interrupting my dream :giggle: I may have even given the nice guy the hairy eyeball. Then I was looking around & 5 people were surrounding me, they had erected a screen (so that no one else would see the drama), and were fanning me. I must have been out for quite awhile (usually, I get horizontal [mostly by falling to the ground] and blood rushing to my head and I wake up within seconds). Stupid lady - next time she'll believe me! After consuming 3 small cups of ginger ale and a donut (no cookies!!! what a rip off!), I felt good enough to walk to my office. After sitting down for about 15 minutes, all of the ginger ale and donut and some of my lunch ended up in my trash can. I've never not been able to make it to the restroom when I felt nauseous. I had a good breakfast & lunch and still fainted and puked. What a terrible day! I slowly packed everything up and drove home (I had the only car, so Bob couldn't exactly come get me). I couldn't even drink water at home because my stomach felt terrible. Today is much better!