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!