justsurviving

Stroke Survivor - female
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  1. justsurviving

    Great news!

    By justsurviving,

    I was screened (twice - one on the phone and one via web cam) for the USC Intensive Mobility Training (IMT) program and qualified! Woo hoo!! :laughbounce:
     
    Admittedly, it is bittersweet - awesome that I was accepted, a bit of a bummer that I am not as far along as I thought.
     
    I am very excited and nervous - I am going April 15 through May 1. Three hrs per day for 2 weeks with baseline testing and end of trial testing to measure improvement. Half of the stroke survivors will be in the 'control' group (I am verifying that this is the 'gold standard' group - therapy that is currently used) and the other half will be in the experimental group - IMT. According to scientific practices, the participant doesn't get to choose which group to be in, that is randomly assigned. I am crossing my fingers that I am in the experimental group & will provide updates regarding that result.
     
    USC is 6 1/2 hours away from where we live, so I am looking into long-term hotel stays. The packet of information sent by USC provided a decent list of hotels which was very thoughtful.
     
    I am so thankful that NASA has been very accommodating with this opportunity for me - I will be tele-working, taking sick time, vacation time, and possibly unpaid time off to cover this time frame. My supervisor has been very helpful and kind about the whole thing.
     
    As excited as I am about this, it is tempered by the recent news of a very good friend who was recently diagnosed with non-hodgkins lymphoma. I am heartsick about this, he is so young, with very young children, & a brilliant scientist. I desperately wish I could do something for him. Anything, really.
     
    Sorry to end on that note.
  2. justsurviving

    I made a man cry

    By justsurviving,

    Although the title makes it sound as though I have all sorts of badassery, I don't.
     
    The IT guy came to my office to update my office-mate's computer. While waiting for my office-mate to leave, IT guy (forgot his name) and I chatted. He started telling me about recent surgeries he has had on his spine and showed me the scars on his neck from the surgery. He has been having difficulty with numbness, pain, and temperature regulation issues. I started to relate some of my experiences/feelings with him and we compared some war stories. We both hate walking downstairs far more than upstairs (much farther fall) and we both went back to work far too early. I told him that it is frustrating to return to work prematurely - I, as well as most everyone around me, expected that I would be able to do much of what I used to do, BS (before stroke). It is a huge confidence blow to realize that you just can't. His face crumpled and he started to cry. Aw crud. I didn't mean for that to happen. I couldn't very well comfort him physically because of all the pain he is in that he just told me about. So, I just sat there awkwardly until he gained his composure. I wish I would have gotten his name so that I could offer some level of support for him. Poor guy.
     
    Whenever I would hear about someone having 'some good days and some bad days' I used to (BS) think that it was a choice. It isn't. I don't get to choose when my balance will work. I don't get to choose when my ankle will hold and when it won't. There are choices about how to handle these situations, but I don't get to choose the situations themselves. Let me guess, someone will post on here about how I can choose to be happy or not. I'm not going to respond to those people. I find it very sad and frustrating when things don't work and I'm caught off guard because they worked yesterday, I just do.
     
    I think that my CNS (central nervous system) is improving as the temperature regulation issues seem to be abating. I'm rather happy about this - warming up my left leg/foot is much easier as it doesn't allow itself to get so cold now and can warm itself up easier. I'm over the moon about this. I have always had a lower than normal body temperature (my average is 97.1) and am usually cold (which is why I loved living in FL so much!) so this is huge! YAY!! Or as Bob likes to spell it - YEY!! :happydance:
     
    Bob is in the Turks and Caicos on the Provodenciales island for a month - due back February 12th. I miss him but like that I only have myself to rely upon. I enjoy independence as much as I enjoy Bob. Thankfully, I don't have to choose! We will be going to Mexico at the end of February for his cousin's wedding - what fun!
  3. justsurviving
    That's right - three year anniversary today.
     
    I'm alive!
     
    I'm relatively healthy!
     
    Celebration!
     
    So, it's been a long time since I last posted - here is the latest scoop:
     
    Bob & I are moved in to our 3rd floor walk-up apartment (not entirely unpacked, of course, but moved in nonetheless!). Bob was gone for nearly a month - 1 week in Orlando for work-related stuff, 1 week in Nigeria as an invited speaker at a conference, and a little over another week in Orlando to pack & move the remainder of our stuff. He got back and left again today for 2 weeks on an 'unemployment vacation' I guess. It makes me a little nervous, I would rather he get a job and contribute monetarily but he is a hard worker and deserves a break too. I don't know how he manages it, but somehow, people find out he has moved/left a job and job opportunities arise out of nowhere - it really goes to show what an impact he has on the concrete industry! Two of the most recent opportunities include working as a regional manager for a concrete admixture company (I think), and the other is a job offer from Nigeria - he would be gone for about 6 months at a time though... I'm trying desperately not to show any preference on my part so that he takes the opportunity that works best for him.
     
    I am working full time at NASA now - I really enjoy it. The people are smarter than me (not that it is difficult to accomplish) and the projects are interesting. I hope to stay here for at least 5 years.
     
    Stroke-related info: I have a Dr. appointment today and hope to get a prescription for PT again. My goal right now is to be able to run by my 5th year anniversary. I feel as though that is do-able and realistic. Bob & I have taken to riding bikes (separate bikes, not the tandem bike) on the weekends and I am getting pretty good at riding now. My foot doesn't know entirely yet how to stay on the pedal correctly but the pressure is getting so much better (it didn't know how much pressure to alternately pedal and stay on the pedal itself since they are different pressures).
     
    Good stuff!
  4. justsurviving

    Sly side effect

    By justsurviving,

    BS (before stroke), I knew how to just casually chat with people - I had an idea of what questions to ask and was very interested in other people's lives. In my (very biased and self-centered) opinion, I have misplaced this ability. I feel as though the stroke really forced me to study and analyze everything I could or could not do. This forced self-centeredness lasted for as long as other people seemed to be more interested in me than I was in them. At first, it was very confusing. I am not a fan of having the spotlight on me. No matter how much I thought I deflected, I was still looking more inward than outward.
     
    I have become selfish and I hate it terribly. I recognized this a few months ago and am actively trying to turn it around so that my true interests are clearer. I am so interested in what others have to say but seem to lack the knack of asking the right follow-up questions. When someone else is around and they ask questions, I am forever grateful and recognize the follow-up question as 'duh, of course that is what I wanted to ask!'.
     
    I suppose I can blame a lot on the stroke. I want to. I don't want to think that I have become more selfish as a natural course of action. Bah! That would be terrible if true.
     
    I got the opportunity to visit with people who mean very much to me. When I am on my own, I want to hear about so much and forget about asking what I want to hear. Maybe this is the shy nature showing itself, not stroke or selfishness? Eh - it all sounds like shifting the blame from where it should be - squarely on me.
     
    Now that we are moving to VA (yay! Bob is moving with me!), I got to say 'see you later' to some really neat people. I was (and am) at just as much a complete loss of words to somehow show my appreciation to people who helped me in dozens of ways as I am at asking appropriate follow-up questions. My advisor didn't seem to treat me any differently BS or A.S.S. (after stroke symptoms ) and pushed me equally hard. What words can be used to show how much that meant to me?! Friend of Survivor who was interminably supportive throughout the entire dissertation progress. A simple 'thank you' seems so paltry. I hope they know somehow in their hearts.
  5. justsurviving
    Negotiations with NASA have been rough going and clumsy but I finally received their final offer letter today and I will be moving to Hampton, Virginia to start working on 29Sept.
     
    I am excited and a little anxious. I know that I will be conducting research in aeronautics but the specific project hasn't been revealed just yet. It sounds as though the PI (primary investigator/boss) will be in California - Ames. This should be interesting.
     
    I truly hope that this will be smoother than my last position. I was so . . . desperate then. Desperate to seem normal. Desperate to prove that I could get a job and be productive. Desperate to show that I earned my education. Just . . . desperate.
     
    Now, I feel that I have more control. I *choose* this position. I am not taking it out of fear or desperation. I am taking this position knowing that I have wanted to do aviation research for 8 years (since my internship at NASA Ames).
     
    I will be moving away from Bob again, but I feel more sure this time and less rebellious (as though I had to prove I could do it on my own).
     
    I am so happy to finally feel comfortable in myself - in my abilities; both physically and cognitively.
     
    I'm going to rock this. :laughbounce:
  6. justsurviving
    Light:
     
    Bob & I spent 4 days on the island of Provodenciales, Turks and Caicos. He has business there and I got to go since I am all unemployed.
     
    We rented a car - a Daihatsu Charade. It definitely was a charade of a car - it looked like a car imitation at best. When closing the doors, it sounds like you are closing the lid of a tin can. Driving there is interesting, it is the only thing which escapes "island time" (the "relaxed" view of time as unimportant). There are tons of roundabouts which is probably the only reason there aren't more accidents and driving fatalities. The upside-down triangle that reads "Give way" is loosely translated as "we view yielding as a judgment call and leave the call up to you". Yow.
     
    The beaches were beyond beautiful - white sand, emerald ocean near the beach and incredible sapphire blue in the deep part. We went scuba diving. I was nervous and accidentally touched some fire coral. I tried so hard not to touch anything to preserve the reef for the next diver. I didn't ruin anything but my skin truly burned from where I touched the coral (their only defense) and I made it my only mission through the rest of the dive NOT to touch anything. I was so focused on this that I missed just how beautiful everything really was - colorful fish, reefs, the clear water. A lot of scuba diving relies on your breathing to stay in a neutral float. I would get so nervous, that I would take a huge deep breath and start floating upward (bad). The instructors were very patient and helped to stabilize me easily. It was a really neat experience.
     
    Heavy:
     
    While on the island, I spent some time alone while Bob worked and just relaxed by the water. I had a realization and am on the brink of another. I not only understand why I had the stroke when I did but now I truly appreciate the timing of it. I was at my most fit and that helped me to recover. Although I have known this all along, I didn't appreciate it.
     
    I also think that to some degree, we don't think we will grow up. It happens so slowly that we realize how lucky we are that we don't have to experience our teens any longer. Or, we realize how much we have grown in knowledge and wisdom. Most of all, the physical age doesn't normally hit us as quickly as the stroke does/did.
     
    One of the biggest problems is that I felt as though I aged 50 years overnight. I could no longer be energetic, walk with ease, be graceful. I was in a wheelchair and graduated to a cane and then to canelessness. While that progression was relatively fast, it wasn't like recovering from a broken leg - once you no longer have the physical reminders of the incident (cast/crutches/cane/whatever), you can pretty much use it just like before. Stroke recovery doesn't work like that. It is so slow, painful, and demoralizing.
     
    I can't wait until I can look back and appreciate the recovery. I already know that I am speaking too soon for that, but I am more hopeful now that I can appreciate the timing. I am hopeful that I *will* get to the point where I will appreciate the recovery.
     
    I already feel like the kid in the back seat "are we there yet?" "are we there yet?"
  7. justsurviving
    A week and a half ago, NASA called to offer me a job. The pay is significantly less that I expected so I am in the middle of negotiating pay and trying to get the relocation package details.
     
    Bob is having some difficulty with all of this - he wants me to be happy (I hope) but he has put so much blood, sweat, tears, and money into the company that he runs here in Orlando. He also really doesn't want to travel as much as when I lived in Bloomington, IL (he flew to see me nearly every weekend).
     
    There is another company that is located here in Orlando that shows promise of offering me a position but, as it is government as well (Army) - and that means molasses would win the race, the offer is at least a couple of weeks away. The research at this job sounds really interesting (medical training) so I am even more torn; move to VA and do really cool aeronautics research at NASA or stay here and do really cool research for the Army? I am not a supporter of war (I'm not sure anyone *really* is, but I really detest it) and I am positive that at some point in my career in the Army, I would have to work on something that would be war-related.
     
    ~sigh~ I guess we'll just have to see how the cookie crumbles...
  8. justsurviving
    I received a call last Thursday asking if I could fly to Hampton, VA for a site interview with NASA. Sure, why not? Here is the recounting of the visit:
     
    Flights were no problem (whew!).
     
    I went to the car rental desk and said that a reservation is in my name, but paid already. The desk clerk wanted to charge it to my credit card. I said I didn't think that was right as it was booked and paid for by the company with which I am interviewing. A gentleman overheard the situation and offered me a ride to the hotel as he also works at Langley AFB. I was frustrated but not done with the situation. I looked at the clerk and she said - "get a ride with him if you don't want us to charge your credit card" That pushed me over the edge and I said fine.
     
    So, here I am riding in a rental car with a stranger. I wish I could say this is the first and only time I have ever done such a thing, but it isn't. How do I get myself into these situations? Too trusting? Too stupid? Maybe. Maybe. Well, we went to dinner and met a coworker of his at dinner. Yep, I am the lone woman at a table with two strange men. Great. If you find parts of my body in the ocean near VA...I went willingly. These 2 were not fans of this area of VA and were enthusiastically complaining about how poor and terrible the area was. I think it was more of a matter that they held biases that I didn't. This became very clear when driver guy said "I don't mean to be racist" when clearly he did. After dinner, we went to the hotel. Check-in was a breeze and I couldn't wait to get to my room - I had a lot of water with dinner!
     
    My room was on the 8th floor and the elevators were working overtime. I slid my hotel card into the door slot and when the light turned green, I couldn't get in fast enough. I closed the door and secured the privacy latch as a matter of habit. The bathroom launch sequence was advancing. As I looked for the bathroom, I noticed the TV was on and thought that was odd but I had other things on my mind. I threw my bags on the table and while skidding into the bathroom, I notice bags and clothes on the bed, beyond the bathroom. Crud, someone else was already in this room. "hello?" No answer. I debate for all of 2 seconds and realizes the launch sequence was too advanced to cancel now. Yep, I used someone else's bathroom all the while hoping and praying that they wouldn't come back to their room while I was there...please, please, please! I think I hear someone at the door. Seriously! Luckily, the 'privacy lock' prevents a card from gaining access into a room. I'm sure there was a mighty confused person standing outside their hotel room. :bouncing_off_wall:
     
    I grabbed my stuff and cautiously left the room - looking both ways to see if anyone noticed me. The way was clear! I went back down to the desk and said "Could I maybe have a room with no one else already in it?" The hotel clerk confirmed the error, apologized and gave me another room - on the 10th floor. This meant nothing to me as I had never stayed there before but, as I approached my new (and hopefully empty) room, I noticed that it was the Presidential Suite. And sweet it was - full kitchen, dining room, living room, 1 & 1/2 bathrooms, and bedroom. The plasma flatscreen TV was huge. I felt duly compensated for using someone else's bathroom!
     
    I felt very spoiled. Maybe this trip is turning around! In fact, there was happy hour going on in the bar downstairs...WITH FREE DRINKS!! I can get on board with that. 2 drinks with the dinner companion of the rental car guy that happened to be in the bar. I went back to my room and indulged in some cable TV since we choose not to pay for cable at home. Weird stuff on TV these days...(e.g. The 2 Coreys, Taboo, reality up the wazoo). I practiced the 40 minute presentation I had to give - yes, I had notification of the 40 minute presentation on Thursday to give on Monday - GREAT, right? I was exhausted, truly and completely. I shut off the lights and went to bed. The lamp near the bed was defective in some way - it kept flashing ever 5 seconds or so. Bright enough that I could see it with my eyes closed. I was the kind of exhausted that makes it feel impossible to get back out of bed, turn on the lights & unplug the lamp - I just turned on my side and covered my eyes.
     
    The bathroom alarm (really? a separate alarm in the bathroom?) went off at 5:55 am. Lovely. I shut it off after the most fitful night of sleep ever and climbed back in bed - the lamp was still flashing. ugh. I had an hour to relax and drifted off a little when the 7 am bedroom alarm went off. Time for the show to begin! The full bathroom had marble floor, marble jacuzzi tub surround, and marble shower. The shower could have held a king bed with room. It had 3 shower heads and 2 controls. I was tired and bleary eyed trying to figure out how to take a shower. Luckily, I was successful - so maybe I *am* too trusting. I was ready to go and downstairs without a problem.
     
    The shuttle driver was friendly as could be - he was stationed in Minot, ND (yeah, I feel bad for him too) when he was in the service. Straight from the streets of NYC to Minot - hee! Culture shock of the first order. I made it to the NASA gate and got my badge. I wasn't in the system so this took some wrangling, of course. The interview team still thought I had a car & I hoped desperately that they would come to pick me up & they did - whew!
     
    9:00 - 10:00 was a group meeting of sorts. About an hour of discussing the history of NASA Langley and the organizational structure - why do companies do this for a site interview? I'm nervous and do not care about the organizational structure of something or other. Really. I don't. I don't even care when I have been there for 3 months. Give this info when I have been hired and been there for 6 months. It really has no meaning before then.
     
    10:00 - Time for my presentation - they sent out a company-wide invitation. Of course they did. I hook up my laptop to the projector system. It doesn't work with MS Vista. Of course it doesn't. Off goes some kind soul to grab his laptop. Luckily I brought both my laptop and a thumb drive with my presentation. The presentation is the same one I gave at State Farm altered so that it fits with what they are looking for (that I understand research) without the usability arc.
     
    10:20 - Presentation starts. I tend to talk fast and the audience of about 20-30 people are glassy-eyed so it went quickly. 10:48 and I'm done. Great. Time for Q & A. There will forever be the one guy who wants to point out the flaw in someone else's research. He seems to be everywhere all the time - I always feel bad for the presenter that has to deal with this guy. That guy is in the room. Of course. One of the questions has to do with research that is highly sensitive and I am unable to get into details without security clearance. Granted *I* don't even have the security clearance. That takes care of "That Guy".
     
    11:00 - Touring the NASA base. We leave the hangar-c u m-office space. As we step outside, the COOLEST thing ever is going on. An F-22 is flying straight up into the air. Straight up! Really far! It was so loud and I felt it in my chest so strong that at first I thought it was a rocket. The plane then arched upside down (the pilot's head was pointed toward earth) and flew full power toward the ground. So loud. When it seemed like it was going to crash, it turned again and flew what seemed to be so close to the ground. Then it banked and went out of view. My jaw was on the ground and attracting ants. Everyone else (there were 3 people taking me on the tour) was very nonchalant about it. Wow. Really - wow!
     
    I saw all sorts of simulators - all part task as they did not include full motion. The majority of the work that the department I would work for is related to aeronautics (really? it *is* the National Aeronautics and Space Administration so I kinda figured and all that) and very little to do with 'exploration' as they call it - space to the rest of the world.
     
    Noon - lunch. My money was in my laptop bag. In someone's locked office. Although I figured that my lunch would be paid since I was an interviewee, it is never a good idea to assume and expect. No one brought up the idea that they would pay for my lunch. I started getting antsy and just followed one person around until we were at the check-out. The cashier asked if this was together (I had 4 pieces of gum in my pocket - that's it & I doubt it would have been a fair trade for a sandwich and drink) - I blessed her silently and shrugged while looking innocently at my tour guide. She stumbled and fumbled out a yes. Whew again.
     
    I realize this is getting long, but you are close to the end!
     
    At lunch, the head of the dept said "If we chose to hire you, when could you move here?". I didn't want to seem to eager and wasn't all that taken with working there just yet so I said "If I chose to work here, I could move the middle to end of August". I've always been pretty good at playing hard to get. Ha! Oh, if you knew me - I am the worst at playing anything but I didn't want to be an eager lap dog & I was truly torn about working there so it worked in my favor, I think.
     
    I'm tired of typing and the main stuff is out there - one tour guide was kind enough to give me a ride to the airport. I missed one flight but got on the next one without fanfare. I was sore (feet & back) and tired so Bob carried me into the house. Hee! Too good to me, that man!
     
    I'll update as info comes in. :cocktail:
  9. justsurviving
    Bob & I went to SD for a week for our anniversary as well as for a wedding. We stayed at a wonderful Bed & Breakfast in Hot Springs (Southern Black Hills) called A Dakota Dream (www.adakotadream.com) which is about an hour outside of Rapid City. Rapid City is the second largest city in SD but is what I now consider a small city (70,000 people I believe).
     
    We flew into Sioux Falls (the largest city at about 100,000 people) and stayed with Bob's brother and sister in law. They have a 12 year old boy, a 3 1/2 year old girl and a 1 1/2 year old girl. The girls LOVE their "uncle Bob! uncle Bob! hey, uncle Bob!" who is a playland at 6'4" for kids. He is a charmer to young girls and older ladies - all 3 of our grandmothers are smitten with him and all nieces are glued to his side. I don't understand the draw...
     
    We drove from Sioux Falls to Flandreau, SD (the county seat without a single stoplight in the town) to pick up his maternal grandmother and then drove to Watertown to visit with his mother. The next day, we drove to the farm where Bob's 89(?) year old grandma tends to the cattle with the help of an uncle living across the street. After 2 days of being 'on' - I got 2 ocular migraines without pain (lose vision for about 1/2 an hour or so) which is draining. I also started to get vertigo only while laying down, but not standing up.
     
    Honestly, my body somaticizes stress in the most odd ways. That is the main reason I didn't check into the stroke warnings (TIAs) that I had prior to the stroke - ocular migraines, night sweats, dizziness - a regular smorgasbord of stress symptoms! How was I to know the important ones from the simply annoying/irritating ones? While the ocular migraines subsided, the vertigo was terrible. It still comes and goes now. I hesitate seeing a doctor because I think it is stress-related.
     
    Back to the trip - on our 3rd day in SD, we drove from Sioux Falls to Rapid City (about a 5 hour trip across the state) where my family lives and the wedding was to be held. We spent time with Bob's dad and my family and drove in the Black Hills (or Paha Sapa as the Native Americans call it). My absolute favorite part of the trip was feeding the chipmunks on Needles Highway (they eat right out of your hand) and smelling the Black Hills pine trees.
     
    Does that sound odd? Smelling pine trees? When I went to Girl Scout camp, the counselors told us about how the pine trees have smells - if you smell between the bark, you can smell butterscotch, strawberry, chocolate, or vanilla (the last two being really rare). While I am positive this was done for their own entertainment as well as some much deserved quiet time, I still like to smell the pine trees. Most are butterscotch. This may be the power of suggestion but try it!!
     
    We are back and I am unemployed - I am not a good unemployed person. I am awful at it. I would make a horrible 1950's housewife! I have 2 jobs that I have applied for and am waiting for decisions. The phone interview one was okay, I guess - they were a little unprofessional at times (claiming to be falling asleep as I answered questions - nice, huh?) but they are checking references which is positive.
     
    One of the positives of being unemployed right now is the time I have to think. I have been far too impatient with myself and my recovery. I have basically told my body and my mind to 'just get over it already' and it isn't responding as quickly as I think it should. I have to create a goal and make a plan to recover both my body and my mind in a more realistic way. Reading the stupid book I reviewed in the previous blog is not a positive way to figure out how to recover either (thanks to all who left comments - it was good to hear opinions!).
  10. justsurviving

    I'm home!

    By justsurviving,

    I'm back in Orlando & living with Bob again. I left Bloomington, IL on Wed, June 11 at 6:30 pm and drove straight through for 16 hours, arriving home at 10:30 am on Thurs, June 12th. As you can guess, I drove into the garage, walked into the bedroom and fell onto the bed. I'm certain that I was asleep before my body hit the bed. It was, thankfully, an uneventful drive. I started to feel the sleep deprivation effects around 3:00 am but stopped for gas and sugar and held out. Around 8:30 or 9:00 am, I had interesting conversations going on in my head. It went something like this:
     
    "My eyes are open, no problem."
     
    "Yeah, just keep the eyes open."
     
    "But I think I just fell asleep with my eyes open."
     
    "Hey, as long as your eyes are open, it doesn't matter."
     
    The effects of sleep deprivation are amusing but dangerous. Thankfully, I got Bob on the phone when I started convincing myself that falling asleep with my eyes open wasn't a bad thing. He helped me stay awake and alert.
     
    I am still unpacking and can't wait to get a job. I have one possibility and another phone interview this week. The phone interview one sounds exciting but I don't want to give any details in a pathetic attempt at being superstitious.
     
    Since I am home all day long, I have noticed that there is a squatter in our house - an outdoor lizard. He lives in one of our plants. I knew that he lived here but had forgotten. He isn't all that happy that I am here all day since he previously had full run of the house during the day, at night, and on weekends thanks to Bob's crazy schedule. I wanted to have a sit-down with the lizard just to let him know that I won't be here permanently (crossing my fingers in hope of getting a job soon) but he is ignoring me. He thinks that shunning me is going to work. He is diabolical, that one. We will have peaceful harmony soon enough.
     
    I am happy to be home & re-entry (living again with Bob) has actually been a breeze.
  11. justsurviving
    Sometimes, the truth hurts. Especially when it is the Bare. Naked. Truth. I've been in, and seen people in, denial about the truth - willing to argue that it isn't the truth. I know that each person's perception is their reality and when someone else points out what seems to be a truth to them, it creates a dent in someone else's reality.
     
    Here is the nitty gritty: The most difficult Bare. Naked. Truth. I had to deal with came a few short weeks after the stroke. No one, absolutely no one can help the stroke survivor. All of the work has to be done by the survivor. There isn't any neosporin, band-aids, cold compresses that another person can do/provide to help. No matter how caring or giving a caregiver is, the stroke survivor is the only person who can wage battle to improve. This cold hard fact became real to me when at one point, I laid on our bed crying uncontrollably and begging Bob to help, please help. Couldn't he just take this away for a day, an hour, a minute? It was unbearable to deal with. I know he felt terrible that there was nothing he could do. I had to deal with it. No one else could help - no talking, therapy (physical or otherwise), nothing could help me deal with it - it was all me.
     
    Current truths: the stroke has left me with oddities;
     
    My hair isn't the same, it is coarser and wilder that it ever was before.
     
    I used to have a great memory - not so much any longer.
     
    I am jealous of people who seem to walk so easily without thought.
     
    I have almost overcome the impulse control issues - really weird and difficult to deal with, but I am working on it and am feeling successful on that front.
     
    I am working on dealing with people - I seem to have a difficult time with small conversation and relating easily.
     
    I am working on being more positive. The negative feelings seem to be easiest and rise to the top faster so I need to work on being more positive.
     
    I was a work-in-progress BS (before stroke) and the stroke just added to the pile and seemed to take away previous progress. No worries, I'll get there again. (see? positivity in play!)
  12. justsurviving
    Bob woke up at 5:30 am feeling nauseous on Sunday morning. He didn't want breakfast. We went to eat for lunch and he wasn't feeling much better. Then he said his left hand was feeling tingly. I drove him to the hospital and he felt like he was going to pass out. They took him back into the ER area and took his blood pressure and temp. His blood pressure was a little low (84/65) and his temp high (100-101) so they started him on antibiotics and fluids. He went through waves of nausea and when he was feeling okay, his BP was good (120/83) and when he felt awful, his BP dropped really low (at one point it was 64/33). The ER doc couldn't figure it out so they ended up admitting him around 1:00 am. His temp even fluctuated from 100-101 to 95.8.
     
    He didn't eat much of anything on Sunday and nothing at all on Monday. The docs decided it would be best to keep him another night and took x-rays of his lungs and belly. The x-ray tech said his lungs were very long. When the results came back, the doc said that some of his intestines are distended and look like they stopped working for a bit. There was a possibility that this was a virus or bacteria in his intestines/bowels so more antibiotic and fluids.
     
    I stayed with him the whole time and we began to compare hospital visits. Of course we were vying to each have the worst visit (!)
     
    His hospital stay:
     
    No 'food cart' at designated times, he actually calls for room service and orders off a menu when he is hungry (much better than my experience)
    Free movies and internet service (I had the 77 channels of crud & no movies or internet)
    Nice private, clean room (mine was neither)
    His problem was undiagnosable in the end (mine was diagnosed quickly)
     
    While the comparison is not fair since I stayed for nearly a month and he stayed for less than 2 days and mine was in a metropolitan area of Orlando and his was in the small town of Bloomington, IL - I WIN!!! :laughbounce:
     
    As usual, sleep was a rare commodity in the hospital (as it is in every hospital). He got his appetite back on Tuesday with a prescription to finish a round of antibiotics.
     
    He decided to stay with me for the week instead of flying to Orlando for 2 days and coming right back here. Luckily he can telecommute.
     
    It is nice to have him here & I'm glad he is better
  13. justsurviving
    Oh that pendulum - always swinging to extremes!
     
    Whether the country is liberal or conservative, as a whole, seems to depend on the swing of the pendulum. Personally, I think the pendulum has been too far conservative and will swing back liberal (at least, I hope so!). I am not a blind liberal who buys into the idea lock, stock, and barrel. I simply hold many beliefs that match better in the liberal sense and are far too contrary to the conservative side.
     
    In other pendulum news - when I was fresh out of the hospital, I had an incredibly difficult time waking up each day. I couldn't get enough sleep and didn't know how much I needed that sleep. I forced myself out of bed and rarely got anywhere before 10:30 am. Well, the pendulum has swung - I am so easily awakened, it drives me crazy. I find myself awake at various times in the night for no particular reason. I am wide awake when I hear someone walking on the carpet (usually when Bob is up for some reason or another). Ugh, I want to be a normal sleeper again! That dang pendulum better not get stuck here.
     
    I have given notice at my current job that I will be leaving. The environment just isn't right for me. I would love to put all of the blame on something, but I think it is just a matter of fit. I want to work in more of a research setting or managerial position and this job has neither of those. I have a few applications out there ranging from California to Florida and hope to have a job lined up before I move June 10th, but I have a safety net of moving back in with Bob if I don't have a job by then. There was no way to find out that it wasn't a fit without trying it out first so I am really glad that I gave it a go. This is a cute town and the people are...interesting.
     
    I will definitely miss: the water - good tasting water here. Potbelly's - good sandwiches and great cookies! Mark & Renee - very intelligent and insightful coworkers. Free cable and internet (okay, not really free but cheap rent and included in the price). The lady who watches Law & Order in the downstairs apartment who is almost deaf - there was some measure of comfort when I could hear what she was watching. The small town aspect of living here. I think that is it...
  14. justsurviving
    A very good friend of mine read my last blog entry and sent me a wonderful email. In it, she said that she understands the 'unforgiveness' of it all and detailed a social psychology principle to aid in the forgiveness process.
     
    Hindsight bias is the prejudice we all have when we look at something that happened when we already know the outcome. Since I already had a stroke, it seems very obvious to me now that based on all the symptoms I had (blindness while running with it going away when I put my head below my heart [dissected carotid]; TIAs; etc.), I should have seen what was coming. However, the doc I went to didn't catch it and he's no slouch; Bob noticed something was off but couldn't figure out what was going on and certainly couldn't have predicted a stroke; I knew something was off, but I was very good at pushing through something (pain, dizziness, etc.).
     
    In the medical field, when a diagnosis is finally provided, doctors who don't know the case or the outcome and who are only presented with the symptoms are unable to diagnose as well; this is a well-researched principle with examples from the medical and judicial fields.
     
    In order to work through something or to forgive someone, a person needs to be able to (for lack of better term) buy into or hang their hat on a reason or an excuse. I tend to be rational and logical and this principle with scientific research as a basis makes sense to me and provides me with a tool to work through and possibly forgive Bob and myself sooner than I, otherwise, could have.
     
    Thank you, Carol! :forgive_me?:
  15. justsurviving
    The *wonderful* Pilates instructor that I found here in town has had a family crisis (her mother has lukemia & the chemo has shut down some organ function) and she can no longer work with me. I will truly miss her. She learned how to work with me (no small task there) and really challenged me. The improvement I saw was small but it was improvement!!
     
    *****************************
     
    Bob flew in on Saturday and stayed until Tuesday morning. Although I took Monday off of work, the weather didn't cooperate for his nice long visit. Too cold and some snow on Sunday! We got a chance to have some really long talks. We seem to communicate well when we live in separate states ;-). It was nice to connect but we discovered something that is...upsetting. By talking it through, we found out that I have not forgiven Bob nor myself for me having the stroke. I don't forgive Bob for not listening to me when I said that I didn't feel well the morning of, he wasn't around when I had the TIA at the race, he didn't believe me when I was puking in a grocery bag. I don't forgive myself for all of the previous AND for not paying attention to the TIAs and for my body betraying me in such a way when I was so healthy.
     
    We talked about what it means and how to forgive and we both decided to allow time for forgiveness. It isn't as though I don't want to forgive us, I guess it just isn't time yet.
     
    That really is a tougher thing to discover than it sounds. As I read it over just now, it sounds very simplistic and harsh. This was a discovery that we found calmly and we discussed thoroughly. We love each other immensely, we just need to figure out how to get beyond this.
     
    Thankfully, Bob said that he has enough love for both of us - he has enough love for him to love me and for me to love me. Perfect because I need it!
  16. justsurviving
    I have been in Central Illinois for 3.5 months. By myself. Doing work that I hadn't planned doing with my degree. By myself. Living in an apartment above a woman who is hard of hearing and loves to watch Law & Order (guess how I know that...). By myself.
     
    Did I mention that I feel a bit lonely? Bob & I have lived separately before - 5 years of our marriage to be exact - I don't know why it is so difficult this time.
     
    Actually, I'm positive that I had difficulties with it the first time. I have faint memories of it. I think that not enjoying my job makes a huge difference. I'm getting paid way too much money to be this bored. I will have to figure out a way to scrounge up something to do, I just don't have the gumption to do that just yet. I'm still getting my legs under me (literally, figuratively - both).
     
    I need to find people to connect with but I have standards that are ridiculous - they can't have small children (no time to be a friend yet), they need to be in the 30-50 year age range (any younger & I don't understand them; any older & they don't understand me), married is a plus (to understand married life). I'm pretty flexible on that last one but the first 2 are rigid standards.
     
    I guess that I'm having difficulty finding people because I haven't really committed to this place yet - not the job and not the area.
     
    Bob & I agreed that we will make a decision at the 6 month mark. He has a theory that the first month of a job is the 'honeymoon' where the job is exciting, the people are exciting, and everything is great. Then there is the next 3 months or so where it is the worst job in the world. This is where the 6 month agreement comes in. No major decisions until I figure out if the job really isn't for me or if I am just going through a phase.
  17. justsurviving

    Well, howdeedo!

    By 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!
  18. justsurviving

    Ice Cream Diaries

    By justsurviving,

    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).
  19. justsurviving

    Positive progress

    By justsurviving,

    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:
  20. justsurviving
    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!
  21. justsurviving

    Come and gone

    By justsurviving,

    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:
  22. justsurviving

    True North

    By justsurviving,

    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.
  23. justsurviving

    Cognition

    By justsurviving,

    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!
  24. justsurviving
    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.
  25. justsurviving
    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.