Sunday, December 19, 2010

My Jeep

Recently, we discovered that the engine in my Jeep had a crack, either in the head or block. In trying to decide what do, we almost traded it in to be sent to auction somewhere. I didn't expect the reaction I had to 'getting rid of it'. When talking to the people at a dealership I began to tear up and couldn't even talk about getting rid of it. After all it had been through with me I have this strange attachment to this silly 'hunk of metal'.

While at a friend's 30th birthday party in downtown Albany someone broke into it to steal Nate's cell phones.


That was just the beginning of our journey. I was driving this very vehicle when my aneurysm burst sending me over a bank. I know it was the Hand of God Himself that allowed me to land safely in that clearing. But, my Jeep was there! It was also the vehicle I was in to relearned how to drive in snow (poor Nate)! Of course, in typical Nate style, he chose the worst snow storm to try it in! But we survived, and even laugh about it now!

Our first experience driving on the beach near the ocean in the Outer Banks also was in the Jeep. We treasure our times on the beach with our wonderful friends, the Krause family !

So, while most people would welcome a newer, fancier vehicle (one that had a working seat heater) I prefer, "my Jeep". It is also familiar to drive and takes way less brain power to get places! While my Jeep was getting a 'new'(used) motor, my father-in-law graciously let me drive his Saab 9 5. It was fun to drive a stick again and know that it was "just like riding a bike". I was very nervous that, I would have to be taught how to drive stick again. Then ,I was worried that I might forget to shift or forget the steps of pushing in the clutch before shifting while remembering what gear I was in and which was next. . While all this definitely took deliberate and conscience attention, I was able to do it. To my surprise the biggest challenge was physically pushing in the clutch. Being cold makes my left side very spastic and shaky . I also had to be careful taking my right hand off the wheel to shift. You can only imagine what a spastic left arm would do....can you say, DITCH? I had to make sure I got the car good and warm before I could drive. YAY for working seat heaters in the Saab!!! I still was encouraged that I was able to sequence and coordinate driving a 'new' vehicle, it wasn't easy but I did it!
So my Jeep got a 'new' engine and seems to be running very well again! I am happy we could keep it even if it is "old"!! Hoping it lasts a few more years so we won't have a car payment :)

Monday, December 6, 2010

My Life Without Me

Maybe it is just me that finds it funny; on TV, as I write this is ,"Rudolph and the Island of Misfit Toys"(that is kind of how I feel sometimes, like a 'misfit'). Anyway, I filled in at the library today and was shelving some DVDs when the title "My Life Without Me" caught my eye. It got me thinking that it was the perfect way to describe my early stages of recovery especially, though it still feels like this even 7+ years later!  I felt like I was living my life but without the girl I knew as 'me'. I used to be asked daily, "how is everything?" or "how are you feeling?". I'm not going to lie, I dreaded these questions. The answer was too complex and I felt like all people really wanted to hear was a "happy" answer. While I had so many things I was truly thankful for my real answer is "I am exhausted". I really wanted to say "I am so exhausted I don't even know how to answer your question". If I was asked this question in a crowded or noisy room, I had to restrain myself from just bolting out the door to a quiet, less confusing place. Most of the time I literally felt like a 'fly on the wall'. I felt like all I could do was watch life as it happened but always felt very removed from actually being a part of it. The pace of conversation and life in general was far too quick for me to process. Most of the time my way of coping was just a empty, blank stare hoping people would just ignore me and not try to engage a conversation of any kind. I am not sure if this has actually gotten better with time and medication, or if I have just learned to live with it, and have actually forgotten what it was like 'before'. I am also better at simply avoiding situations where it is very noisy and impossible to filter out extraneous distractions. Of course, these situations can't be avoided entirely so I often escape for brief moments of quiet! So, that is 'My Life Without Me'. I like how the song "Where I Belong" by Building 429 describes the feeling:"Sometimes it feels like I'm watching from the outside
Sometimes it feels like I'm breathing, but am I alive??....."

Wednesday, December 1, 2010

One of those days.................

Today is one of those days when I seem to be extra slow and rather disoriented. Must be some sort of reverse "Midas Touch" where it feels like anything you touch just crumbles instead of turning to gold!! These days sort of sneak up on me and I feel like it is impossible to stay encouraged and keep a smile on my face. I once heard it said, "You never see bad days in a photo album, but it is these days that get us from one happy snapshot to the next."- Unknown I think this is usually true and I know from experience that at the time we don't want a visual reminder of 'bad days'. When I was in the hospital after my aneurysm rupture my parents wanted to take pictures so I could later see how far I had come.The thought of having to remember that horrible time in my life horrifed me and I refused to let them take "too many pictures". I thought if everyone just ignored it and pretended it didn't happen then maybe life could just go 'back to normal'. I hated that my life was going to drastically change and I hated that it wasn't 'just a bad dream'. In my drugged, damaged state I really thought if I just denied it enough times it wouldn't be true. Now I realize my family was right, I should have let them document more of the 'bad days' because they are now part of what makes me the person I am today! Even still there are 'bad days'.Days when I don't take a shower because I simply don't have energy. Days when I just wear the same thing I did yesterday so I don't have to make one more decision about the day. Sure there are days that I back into a stationary retaining wall that I know is there. These are all pictures I will spare you from. But, even if I burned dinner, again, because I forgot it in the oven, AGAIN I am reminded of the 'happy snapshots' to come and I am thankful that being alive also means all these silly mistakes that I choose not to put in my photo album. So I will leave you will my 'happy shots' from last week!












Monday, October 18, 2010

"Keeping it Real"

For days now I have been debating whether or not to post this silly story. I have finally decided I would, so here you go.......
Ever since my aneurysm I have a hard time telling dreams from actual life. This can be confusing and frusterating from time to time. Sometimes it makes me feel like I have completely lost my mind which, of course, scares me. My doctors aren't overly concerned considering what my brain has been through. Just the other day I was telling Nate how I drove past our old house and noticed they ripped all the gutters off. He asks me when I would have driven that way. Of course, I had no idea and realized it was a dream. We took a drive past the old house just to make sure! We found the gutters still attached and me frustrated by my silliness!
So with all that being said, Nate was out of town last week on an installation project with work. Someone at work asked me to fill in on Friday for her. I wrote it down in my planner and was all set to work Friday. She found that she did not need to to cover that day and called to let me know. When Friday morning rolled, around I had this thought that maybe I had "dreamed" that she called back. I panicked for a moment and totally didn't trust my own memory! I went to my planner and found the note about work erased and figured that it was a good indication I had not just "dreamed" it. I still did not totally trust myself though! I had to run a few errands near the library and stopped by to make sure Judy was there and to verbally verify that next Friday I was filling in for sure! Normally, Nate would be the voice of reason for me and it made me very thankful to be married to such an understanding guy!

Tuesday, October 12, 2010

EEG Results

My neurologist called me last week (maybe before) and told me the results of the EEG (Brainwave test looking for seizure activity) was "good". He called my cell phone while grocery shopping and says "Lisa, good news, we found brainwaves". Since I was in the middle of shopping my sense of humor was turned off at the moment. Also, when speaking on the phone I tend to take things way too literally because I get no 'body language cues' like when speaking in person (and that is even hard for me still). "That's good, right?" I replied. He apologized, recognizing that I seemed not like my usual self. He explained he was trying to make a joke. That made me relax and we had a good laugh about it. He is going to monitor my migraine auras to see if we can figure out a trigger and avoid more scans of the brain. Please pray that I could have a peace and not focus on these auras. You see, I have lost the "filter or cap" that keeps you from obsessing needlessly about things. I admit, this was never easy for me so you can only imagine how bad it is now! Love and Blessings!

Monday, September 27, 2010

Moments (with my niece and nephew)


I do not believe in "what if". I believe in a sovereign God that directs everything exactly as it is supposed to be, even if we don't understand. But, I am only human and from time to time the enormity of what I have lived through just hits me and I admit that the thought, "what if I missed this" creeps in. I have learned not to dwell on this thought but to simply appreciate it for what it is, just a thought. Dwelling on it only brings on intense fear and sadness. While visiting my sister and her family, this thought crept in. I thanked God that I have the opportunity to get to know my beautiful niece and nephew and be a small part of their lives!



Friday, September 24, 2010

Official results and stuff.....

My doctor just called to let me know the tests on my heart "all look normal". So not used to hearing those words out of a doctor's mouth. I am thankful and relieved for the good news.

I also had my EEG test today (measures brainwave activity). Apparently, the scar tissue in my brain (from aneurysm rupture)makes me at high risk for seizures. Doctors just wanted to rule that out at this time. The test was pretty easy as brain tests go. They glue a series of electrodes to your head then make you open and close your eyes as a bright light is flashed in the dark room. All my scars had to be mapped as the effect the results if the reader is unaware of them. The technician said I really put her to work diagramming them and trying to get the electrodes to stick among "the thickest hair ever" (her words not mine). I told her God gave me all that hair to cover all those scars. Deciding I had a good sense of humor she left me with this, "just in case anyone wonders, we did detect brainwaves". Then, she let me go even though I looked like a mad scientist! Seriously, for walking out of a hospital, I got a lot of strange looks. Here is why:

Thursday, September 16, 2010

more updates.........

I had an ultrasound done on my heart today to check on a murmur. The paper the doctor handed me said echo cardiogram but I think it ended up being both at the same time! The official results will be in next week but the technician said (after a bit of prying) that indeed there is a murmur but they are usually just monitored unless they are really bad but she thought mine did not qualify. So, looks okay for now! Thank you for praying! Will make sure to update the blog when official word is in!

Tuesday, September 14, 2010

Neuro Update

I went to see a new neurologist on Monday. I liked him very much. It is very unusual to find a neurologist with a sense of humor!! He said he had briefly looked over my records from the neurosurgery department (there are SO many, there was not time to review them all) then I went over my list of questions that my PCP helped me put together. The doctor got this smirk on his face then said, "you are a mess". We had a good laugh then he went on to explain that what he meant was, although he had never had anyone specifically mention my particular issues, my brain is still very scrambled from the two bleeds. The brain, being the body's control center, is probably responsible for all the "weird things" doctors can't account for with their medical tests. He described how a leading researcher once had a patient go into severe tachycardia while clipping an aneurysm. Once the surgeon let up on the aneurysm the heart returned to normal beats. His point being, the brain can't always be explained. There is no medical explanation for an aneurysm clipping causing irregular heart beats, then returning back too normal. So, he wasn't overly concerned about what he was hearing. Since I am at such high risk for seizures, (due to scar tissue in brain) I will be getting an EEG sometime this month just to be sure there is no seizure activity in my brain. He really doesn't feel that this is what is going on, admittedly he is being overly cautious. I am thankful for doctors who care enough to be careful. He also wants me to keep a "migraine log" to see if there is any obvious triggers. I, of course, wanted and exact list of what should be included in this log. He again smiled and said "I don't want an OCD log of every detail of your day, I just want you to note anything you feel is important, see if you can find a pattern". In 15 minutes he could already tell he was going to get and OCD list when he sees me next time, YIKES!! I'd like to think it is because he is so familiar with TBI, not that I have such an obvious personality flaw. Either way, there are no major concerns at this point so I am just trying to take one day at a time!! Thanks for all of your prayers, they certainly made a difference to me!!

Just being silly

Okay, from time to time, yes, I need comic relief. Not everyone appreciates this quirky quality but ,that has never stopped me. So, here you go, I have heard people say that owners start looking like their pets. Or, was it that pets start to take on the personalities of their owners?? I can't remember, so I will let you decide.......(mind you these pictures were taken months apart by two different people. I was just flipping through some pictures and this made me laugh).....................


Thursday, September 9, 2010

JUST ADD IT TO THE LIST!

My job coach today told me to write a book and call it "Just Add it to the List". Yesterday, I went to my routine PCP follow up after changing around some medicine. Upon listening to my heart, she said "your murmur sounds much louder today". I didn't realize I even had a murmur she was keeping track of. Anyway, due to my medical history, further tests will be done on Thursday, just to be safe! Check Spelling
So, yesterday this story from childhood kept running through my mind. I felt like the "pup tent" that we once slept in while camping. Yes, it was held up by two flimsy strings and a thin pole on each end. And, to make matters worse it smelled like dog poo from being kept in a musty basement. One night my sister, Kristin, and I were smooched in this dog poo smelling pup tent with my 80 pound Lab, Megan. Of course the jokes were just flying amongst the friends with us (we were at a trail system with our horse for a trail ride). Well, in the middle of the night, in the dark, someone went to the bathroom and didn't have a light. I'm not sure why the smell didn't signal his proximity to our tent, but it was the middle of the night, so I'll cut him some slack. So, he trips over the thin string holding up one end of the tent. The whole end collapses in on Kristin and me as we are sleeping. Kristin woke me up for fear that we would suffocate to death. Neither one of us wanted to go outside and fix the string so we decided to just spin around so the end still up was by our head and the collapsed one at our feet. The next night, we decided it would be better to just clean out the horse trailer and sleep in there! To make a long story short, it was not better! Now it smelled like horse poo and the floor was even harder than the lumpy ground not to mention dirty! so, what is my point to this story? Sometimes I feel like that pup tent, held together by "two flimsy strings". From time to time one end doesn't work properly and needs to be "staked into solid ground" again. BUT, it could always be worse!!

Sunday, September 5, 2010

SQUASH - not the veggie

Bob Woodruff says, " No one can undergo a life-changing event and be the exact same person they were before it happened." I think he is right, but that is not necessarily a bad thing. As someone who deals with change poorly this used to make me feel very sad after my aneurysm burst. I remember spending a lot of energy trying to convince everyone that I was exactly the same, because in my jumbled mind this meant I was "ok", and there was "nothing wrong with me". I even became angry if people made me feel otherwise. So, what triggered this memory?? I'll tell you, it was part of the sermon in church this morning. One of our pastors talked about how we are shaped by God our Creator "Potter". He used this analogy about an actual clay pot. "When the potter isn't happy with his clay, he doesn't throw it out. Instead, he may just squash it and start again". I know that God the creator is perfect in ALL ways so it is not that He has made a mistake but sometimes allows trails that "squash" us and give us the chance to "start again". For me this was very literal; learning how to walk, read, drive, cook and many other things again. Perhaps I was lumpy clay before, I was substitute teaching while getting my Masters in reading so I could keep my NYS teacher certification. To be honest, I hated it so much I didn't want to get out of bed in the morning. I dreaded Monday because it meant another week of subbing. I felt a lots of anxiety about doing all the things I needed to do to keep that certification because it "was a good job". I did truly loved the children I worked with and I loved the actual teaching part, learning new things and discovering what the world holds through the eyes of a child. It was all the other stuff I dreaded, the classroom management, trouble with parents, following IEPs, standardized testing scores etc.. I felt very inadequate for the job and had a hard time believing others who told me otherwise. So, with all that being said, I was pretty lumpy clay. After my aneurysm, my teaching certification expired and I almost felt liberated from the bondage of trying to keep it no matter what, I had worked so hard for it. Sure life was different and held new challenges but I can honestly say now I am thankful to wake up each morning and I look forward to going to the library to 'work'. Of course, there are other areas of life that are still "lumpy" (like I have never had any desire to bear children of my own, now more than ever, I have always wanted to adopt a child, I don't know why, just is what it is and is one thing that has not changed). So, like everyone not all my "lumps" have been completely resolved yet, but I am still being molded. SQUASH may have saved me from me, what a wonderful potter we have! I am thankful to be here and hope that this time I am not lumpy clay, so hard to mold, it needs to just be squashed. Thank you Lord for giving me the chance to be reformed, I hope this new formation brings God glory!

Saturday, September 4, 2010

EARL

Just incase any of my fellow aneurysm buddies actually read this: I don't know if any other survivors experience this but, when a weather front is coming in I can feel the exact line where my skull was removed then replaced. I can even feel where the shunt valve enters. Hurricane Earl just seemed to make it worse. A cold front moving in and Earl to the East made for a Motrin filled evening. To make matters worse that song by the Dixie Chicks (you know, the Earl has to die one) kept running through my pain-filled head, oh, the joys of being me!!! Blessings and happy healing!

Tuesday, August 24, 2010

Light at the end of the tunnel


We were blessed by going on vacation with our dear friends to the Outer Banks last week. To get there we had to go through the Chesapeake Bay tunnel. As we were driving through this analogy came to mind. I almost feel like the last five years (since my aneurysm) have been spent living in this figurative tunnel. It feels dark and scary sometimes and you have no choice but to go through it or drown. You see, for five years much of my emotion has been stripped away making me feel like I just exist! It is only recently that some of the "normal" human emotions and feelings have returned without just pretending they are there, because I knew they should have been. But now, after living without them, how does one handle or deal with them appropriately without a great deal of anxiety? It seems like doctors just say "this is normal" and try to throw another pill at me. I want someone to teach me again how to deal with it without having a meltdown! Now part of my problem, I understand, is that parts of my brain have literally died from the blood irritation after rupture so other parts have to take over functions they normally would not be designed to do. But I act so "normal", right? Ah, the inner workings of the brain :) So, for now, I am thankful for each new day I am given no matter how well I deal with its contents!

Tuesday, August 10, 2010

New 'Normals'

Okay, I admit, I am not good at change, adjusting, going with the flow; whatever you call it, I am not good at handling it. You know what I mean; so accepting 'new normals' in life has and is a struggle from time to time. My sister just had a baby boy (Brody DeWayne Owen Darnell)....Where I really want to be is there with my family meeting little Brody. Before my aneurysm ruptured, I would have just driven there (3 hours each way) and met him, then come home, packed, and headed on vacation with Nate and our good family friends. I can no longer physically or mentally do that. I need days (yup days) to pack and would need a week to recover from a trip like that! So I am VERY VERY thankful that I am here and will eventually get to meet him while at the same time still feeling a little sad that I can't fit it all in as I would like! So welcome to the world Brody, I can't wait to meet you!

Wednesday, July 28, 2010

For my "aneurysm friends"

"One day at a time sweet Jesus that's all I'm asking from you. Give me the strength to do everyday what I have to do. Yesterday's gone sweet Jesus and tomorrow may never be mine. So for my sake teach me to take one day at a time."- Merle Haggard
I am five years post ruptures and still learning that I have different limits than most people my age (I just turned 30). I went to visit my parents (2 hours from my house) on Thursday and Friday of last week then came home. On Saturday, I went to my husband,Nate's, company picnic then to the county fair he used to work at as a child. We went to the 'truck pulls' and I forgot my earplugs, it was too far back to the truck to get them so I just had to deal with it! Anyway, this is a normal amount of activity for someone my age but not me STILL....I totally crashed. I think I literally slept all of Tuesday because I didn't rest enough Monday! It can still be frustrating even after 5 years. There are so many things I still want to do without always holding others back. I have to get better about respecting my own limits!!! At least it takes me two days to recover now instead of two weeks like it used to! Keep the faith my friends....we will all get through this together!

Tuesday, June 29, 2010

Lessons from Brylee



My mom had major surgery Monday and I "made" her come to Albany to have it with a really good doctor, that I also happen to go to. Anyway, my sister is much better at the hospital thing, since she is a nurse and knows exactly what to ask and how to offer help. Plus, she is way less spastic about such things than me! Anyway, I volunteered to watch my niece Brylee (2 years) while she went to the hospital with my dad. Kristin stayed in the morning and let me sleep til my usual 9 am, bless her heart! By noon, I was literally pleading with the Lord to allow Brylee to take a nap. He answered my prayers, I was so tired and I didn't dare move and risk waking her up so I dozed off for the hour Brylee did. With all that being said, I realized why God designed a family with a mother and father. By the time poor Nate came home I had no dinner plans and could hardly put sentences together, my balance was horrible and I was totally spent!

Nate took Brylee for a walk to get the mail (again) to so I could have a few minutes to regroup without a total mental meltdown! Don't get me wrong, I loved every minute I had with Brylee but I am sure God knew what he was doing by not giving us children, it is 5 years later and I still couldn't handle it every day! I have a total peace about it and have always lacked any desire to have children. I have always thought adopting would be the way to go if I was ever given the opportunity! I always feel like I have to justify this to well meaning people though! I also learned a bit about when the Bible talks about "faith like a child". Brylee is going through a phase where she is scared of running cars. While taking her for a "walk" to the mail box, for the first time that day, she heard the engine of a large dump truck in the distance. She couldn't see it but she knew it was there and wasn't sure when or if it would even appear. She immediately grabbed my leg and said "TT up"(TT is my nick name short for Auntie). I picked her up and assured her it was going to be ok "TT has you now". She was immediately calm and we got the mail, then we even walked to the edge of the woods and watched as dirt was loaded into the truck. She had no fear in my arms. It reminded me of how it is with our Heavenly Father. Brylee felt safe in my arms even though I had no power to really protect her from her feared truck, other than moving out of its way! Our Heavenly Father has infinitely more power to protect us when we run, freighted, into His arms! Perhaps trust like a child is part of "faith like a child". Even an exhausted TT was happy to carry weary Brylee up that long driveway, how much further our Heavenly Father will carry us when we are weary and scared!!

Tuesday, June 15, 2010

MY Girlfriend's guide to surviving an aneurysm& living with a TBI , what the doctors won't and can't tell you OR LISA'S GUIDE TO LIVING WITH A BRAIN INJURY!

As inspired by the title "The Girlfriends' Guide to Pregnancy: Or everything your doctor won't tell you" by Vicki Iovine. Okay, NO, I DID NOT read the book or even flip through it for that matter, I don't want to know what it has to say, but the title caught my eye as I was checking books in at the library and I thought it would make for an interesting blog. So, this is for those of you survivors I have met (mostly online). I remember early on in recovery I wondered if all the "weird" things I was experiencing were indeed "normal" after an aneurysm. I was convinced that my "brain injury" would somehow be different because it was caused by an aneurysm(and a massive one at that).  I thought the only people who could really, truly understand were other aneurysm survivors, and let's face it; there are not many of us! I have since learned that every injury is unique and every recovery is its own miracle, but no matter what the cause, our brain injuries share many 'common threads'. Of course, all doctors could offer me was a shrug of the shoulders and a "it is a function of the brain".

So, for those who don't know me well there is nothing funny about this. I am not minimizing the fear and anxiety that follows. This is just my feeble attempt to cope with all I have been through and hopefully make you smile! Okay, here it goes........
I wanted to know "IS THIS NORMAL??"  Although I may/am probably be the queen of abnormal, here is my "new normal":
* I choke on my own spit daily now (probably the lingering effects of a stroke)

* I get hiccups after eating or drinking (blame this too on a stroke)

* I can no longer "hurry". My brain just shuts down if I have to do anything quickly!

* I have trouble switching or transitioning from one task to another.  I am generally 15-30 minutes early for everything so I can have time to slowly transition and refocus on whatever it is I need to tackle next! If the phone is ringing, I have a terrible time stopping what I am doing to answer it.  This has improved with time and the help of a trained therapist reteaching me how to even do it to begin with.  In the hospital, my mom used to help me by telling me that, "in 5 minutes, you will have to go to therapy", otherwise I'd panic and my brain would shut down, and I would not know what to do next!

* I constantly unlock my house, go inside, lock it from inside, but the keys are still hanging in the door (I do this every time, haven't mastered the sequence five years later)!

* I didn't have an appetite for years. I had to set a timer to remind me to eat or I would forget!  I had to learn how my body tells me I am hungry now. Instead of feeling hungry, I get black floaters in my vision or feel lightheaded or dizzy. I generally eat at the same times every day and have snacks with me if I start feeling any of these symptoms! I literally stop and ask myself, "why I am feeling this way?", then remember it means I need to eat something!

* Just because I can tolerate more things on a "good day" does not mean I can always or consistently tolerate them. On a "bad day", my tolerance for any extra sensory input is greatly diminished!!!

*ABSOLUTELY EVERYTHING IS EXHAUSTING!!  For about a year simply taking a shower would require a nap to follow, it was so exhausting! I live in a world now where 'well rested' or even 12 hours of sleep at night still means mentally exhausted!

* I used to walk through the grocery store saying the name of each item I saw. I had to do this or I wouldn't recognize what I was looking for. I would be looking for tea and walk right past it unless I was actually saying it out loud. I even once asked somebody if I was really seeing cake mix because the store had been reorganized and I was sure the aisle I just went down used to have juice in it. Can you imagine what that poor person was thinking, they probably went to look for a butterfly net...hehe.

* When you take a nap, you will wake up and be convinced it is the next day, even though, you are not totally sure what day that actually is. There will not be a person anywhere who can talk you out of this idea.

* If a doctor tells you that parts of your brain have probably died as a result of the bleed/stroke/injury . IT IS OKAY, they are probably right. Arguing with them will not change this fact and even "normal" people only use a small percentage of their fully living brains!

* Feeling "numb" is normal. It feels like you are just watching the world go on but you are not actually a part of it. Perhaps it is sheer exhaustion and perhaps the brain can't keep up with such a rapid world!

* I would randomly vomit from time to time. Poor Nate (my hubby) was an involuntary human shield from time to time. I think I have had every organ and system checked for proper functioning. It all seemed to be okay so doctors just shrug their shoulders and say "it is a function of the brain"

* okay Ladies, let's just be real for a moment. While swimming offers a buoyancy effect that is helpful for those with paralysed extremities the thought of putting on a swimming suit in March is not favorable for a women at any age. I was a pale, bag of bones who hadn't shaved since February 1st (possibly longer).  As you can imagine, shaving was very painful ! To make matters worse, the whole central nervous system is frazzled and finds all sensory input as another assault! I will say that the gift of Moonlight Path body wash and Lotion from my friend's, The Masons, was just what I needed to feel just a little bit more human. Oh, to not smell like a hospital was so priceless at that moment!

* Dialing a phone number was a nightmare and often impossible to do. I could not transfer a number from one place to another. Also, I tried to balance the neglected checkbook once and it caused a massive meltdown!!!

* Talking too much makes me uptight, EXHAUSTED, and nauseous. But, I still can't help myself, I just keep talking!!

* When I sleep now, I just radiate heat for some reason? Yes, every gland has been checked by specialists!

* At first, I had to have my husband, Nate, sit down with me to help plan the next day. We would write numbers next to the event, in my planner, so I could figure out how to execute the activities for that day(yes even when to eat breakfast had to be on the list). It is 5 years later and I still label my activities with numbers sometimes, okay most days (but now I can usually do it by myself).

* All time and events are measured by my aneurysm rupture. Everything is either "before my aneurysm" or "after my aneurysm"

*  My short term memory is terrible but is slowly improving. But, I still have to write EVERYTHING down in my daily planner to survive.

* I was an emotional basket case. I cried at literally everything (even answering a phone), until I was put on a mood stabilizer!

* Rarely do I get excited about things since my aneurysm, things I used to really enjoy have simply become exhausting and filled with "lots of steps; way too many steps to think about sequencing"! I am generally apathetic and melancholy. Unable to make a decision partly because I don't know what I prefer nor do I have the ability to hold two choices in my head and choose the best one! Other major changes in my personality include; but are not limited to:
- now I like and need time alone (I mean like no TV, no phone calls, no visitor, ALONE).  I Never used to be this way, I was exactly the opposite, I loved having people around 24/7! I loved living in a dorm while in college, there was always somebody around!! I would no longer be able to tolerate this! Good thing I got my degree before my aneurysm!!!
- I would be getting mad and not even know it, causing some episodes of what seemed like "flash anger" out of sheer frustration! I  had to relearn how to tell if I am getting upset and step back before exploding!  I try my best, I still explode occasionally!
- More frequent panic attacks due probably to my inability to cope with all the extra sensory input around me!
- I have a very, very hard time being 'flexible'.  I like to religiously follow a schedule and want an exact plan for everything!!


* As a result of my injury my brain no longer has a 'filter'.  I generally say whatever it is I am thinking. While some find this endearing others find it offensive or rude.  I certainly don't mean it that way, but sometimes it is unavoidable and gets worse as fatigue increases. I work hard at thinking before I speak and try to remember what is "socially appropriate" and what isn't but I am not always successful at this!! Oh and, can we just talk about anger for a moment. Very early on, after waking up from my 'drug induced coma', I was simply angry at everything and everyone..... angry, angry, angry(and no filter, YIKES, not my most shining moments to be sure!). I don't know why really, I wasn't really angry about what had happened to me, I think it was my lack of understanding and the pain that I was in (blood being reabsorbed in the body is a very painful process, not to mention b r a i n s u r g e r y)! It made me so mad that in my mind I was being treated like a child. Everyone was so excited by everything I did (like knowing my name and birthday or going to the bathroom) I, however, was completely unaware of how "bad off" I really was. In my own head, I was still an intelligent, fully functioning 25 year old!! Why was everyone making such a fuss over everything???? This question really annoyed me!!!

* For my own safety reasons I am still only "allowed" to drive in familiar areas. I literally can't navigate and drive too.  Don't worry, I went through a rehab driving class and a trained therapist checked my reflexes/ability to drive (yes another road test with the OT, which was way longer and more involved than when I was 16 and just getting my license) and found I was 'safe' as long as I wasn't navigating(or talking to anyone)!

* My attention span now is about the same as a two year old.  I can't focus on anything for very long. Cooking, cleaning, yard work, a movie, you name it, I have like 5 to 15 minutes (depending on the day) and that's all I can tolerate! I have to really work hard to do anything for longer than that.  This often causes me to be VERY easily distracted. Shopping with me is like shopping with a crow, "ooh, it shiny"--> I'm gone, I don't realize I am supposed to tell whoever I am with that I have stopped to look at something.  Nate often teases me that he is going to buy me one of those "kiddie harness with a leash" so he can keep track of me and keep me from getting confused about where I am when I suddenly realize, I'm looking alone!

* If you really want to know what a brain injury feels like then ; do a head stand until your head is throbbing so bad you can no longer think straight!  You recognize things but must approach them differently.  Upside down you think you should be able to carry on like you used to but everything is just so confusing.  People around you think you should be able to carry on, I mean after all you are alive, just upside down! I like "The Strange Familiar" as a way to describe it (and they are great band too).  **DO NOT, actually try this, just take my word for it**

*Let's talk about flooding (of the brain).  Too much information coming at you and suddenly you are in a game of dodgeball except instead of balls there is infomation all being thrown at you.  There you are trying to sort it all out but it just keeps coming.  You are alone and totally outnumbered!! In surrender, you sit down, hold your head and begin to cry, until the 'other side' stops thowing things at you!

* Even if your injury is visible with medical scans people/doctors still forget there is something wrong with you; because you "look so normal now". Even though your recovery can be marked in years, you are STILL recovering! My friend carries this note with her on a card so when she "shuts down" from too much information being 'thrown' at her,  people can better understand why, even if she isn't able to say it:............................................................
"I have a brain injury.I have trouble understanding simple instructions, particularly when i am feeling overwhelmed.
I need you to help me by staying calm and speaking slow and clearly. Treat me with kindness, respect and understanding of my disability.
Please write down any information that i need to remember or act on."

* You can now label my injury as "Acquired Brain Injury"(Acquired from a Subarachnoid hemorrhage/stroke) BUT, it has still been very traumatic to me!

TO BE CONTINUED AS THINGS COME TO MIND!! *feel free to leave me your ideas too!

----------------As adapted by Paula Schmidt (from its original version), with my input!-------------------

While dealing with the swirling questions and frustrations from her brain injury, Lisa came across a book called The Girlfriend's Guide to Pregnancy: Or Everything Your Doctor Won't Tell You. It occurred to her that she — and many people like her with a brain injury — could use such a guide when it came to dealing with the symptoms resulting from her injury. Although Lisa's brain injury occurred from an aneurysm, the items in her guide can help anyone with a brain injury, no matter the cause.
  1. I choke on my own spit daily now (probably the lingering effects of the brain injury). If this happens to you, blame it on your TBI.
  2. I get hiccups after eating or drinking. I blame this on my stroke, too, so feel free to add your own twist.
  3. I can no longer “hurry.” My brain just shuts down if I have to do anything quickly! Feel free to shut down on a regular basis.
  4. I constantly unlock my house, go back inside, and then lock it again from the inside — only to find the keys are still hanging in the door. I do this every time — I still haven’t mastered the sequence five years later!
  5. I didn’t have an appetite for years. I had to set a timer to remind me to eat or I would forget. Chocolate, of course, can always be your exception.
  6. For about a year, simply taking a shower would require a nap to follow. It was so exhausting!
  7. I used to walk through the grocery store saying the name of each item I saw. I had to do this or I wouldn’t recognize what I was looking for. For example, I would be looking for tea and walk right past it unless I was actually saying it out loud. I even once asked somebody if I was really seeing cake mix because the store had been re-organized and I was sure the aisle I just went down used to have juice in it. Can you imagine what that poor person was thinking? They probably went to look for a butterfly net……
  8. When you take a nap, you will wake up convinced it is the next day. There will not be a person anywhere who can talk you out of this.
  9. If a doctor tells you that parts of your brain have died as a result of the bleed/stroke/injury, they are probably right. Arguing with them will not change this fact. It is OK. Even “normal” people only use a small percentage of their fully living brain.
  10. Feeling “numb” is normal. It feels like you are just watching the world go on but you are not actually a part of it. Perhaps it is sheer exhaustion and perhaps the brain can’t keep up with such a rapid world!
  11. I would randomly vomit from time to time. Poor Nate (my hubby) has often been an involuntary human shield. I think I have had every organ and system checked for proper functioning. It always checks out okay, so doctors just shrug their shoulders and say “it is a function of the brain.” Yeah, yeah.
  12. Okay, Ladies, let’s just get real for a moment. While swimming offers a buoyancy effect that is helpful for those with paralyzed extremities, the thought of putting on a swimsuit in March is not a favorite thing for any women of any age. I was a pale, bag of bones who hadn’t shaved since February 1st (possibly longer). Shaving was painful, as you can imagine! To make matters worse, my whole central nervous system was frazzled and all sensory input felt like another assault. So, feel free not to shave (unfortunately, you can’t skip the swimsuit).
  13. Dialing a phone number was a nightmare and often impossible to do. I could not transfer a number from one place to another. Also, I tried to balance the neglected checkbook once and it caused a massive meltdown!!!
  14. Talking too much makes me nauseous.
  15. When I sleep now, I just radiate heat for some reason?
  16. At first, I had to have my husband, Nate, sit down with me to help plan the next day. We would write numbers next to the event in my planner so I could figure out how to execute the activities for that day. It is five years later and I still need his help sometimes (but now I can usually do it by myself… I think).
  17. All time and events are measured by my brain injury. Everything is either “that was before my brain injury” or “that was after my brain injury."
  18. My short-term memory was terrible but it is slowly improving. I still have to write EVERYTHING down in my daily planner, though.
  19. I was an emotional basket case. I cried at literally everything (even answering a phone), until I was put on a mood stabilizer.
  20. I will say that the gift of Moonlight Path Body Wash and Lotion from my friends, The Masons, was just what I needed to feel just a little bit more human. Oh, to not smell like a hospital was, and still is, priceless!
  21. My faith has carried me through, along with the love and support of an amazing husband, family, and friends. A good friend once told me, “Lisa, no matter how many times you fail, you are not a failure! I don’t know about you, but sometimes I still need to hear that from time to time.
  22. Finally, I want to share what I consider the thing that makes every pain-staking minute of recovery worthwhile. The “silver lining,” if you will, is ALL OF THE MOMENTS OF LIFE I didn’t miss out on — thanks to my exceptional good fortune of surviving the odds.

  

Thursday, June 10, 2010

A shorter version of my story!


Sorry it has been pathetically long since I have updated. I am afraid I am still bad a learning my limits and did too much and had a total CRASH. I mean worse than it has been in years. I spent two whole days sleeping, that is how tired I was. I even got someone to cover my shift at the library which I never do because I really like going there but I was just so tired I felt like I just couldn't go on. So why the crash? Well, I won an award at this year's Brain Injury Conference here in Albany which meant giving an "acceptance speech" so I decided to say thank you and share my story with other survivors. It was really 'fun' actually but the emotions involved in relaying the story was more exhausting than I thought! Wow, it drained me but I am still glad I shared. I hope it at least encouraged one person in the room!! I am trying to figure out how to post it on you tube so friends and family who wanted to be there but couldn't can see it! Stay tuned, I'll find help from someone who actually knows what they are doing!
Here is a 'copy' of what I said.......
First, thank you for giving me this award. There are no words to describe how honored I am, so I’ll leave it at THANK YOU! And, thank you to everyone who put this conference together. I have looked forward to it every year since my injury. For two whole days I get to be in a room full of people who have “been there” and understand what living with a brain injury is all about! What an unbelieveable blessing. Thank you Brain Injury Association for making all this possible every year!!! Now, I’d like to briefly share my story with you:
February 1, 2005 was a cold and snowy day. I reported to my first job feeling fine and was driving to the second one when a brain aneurysm in my right middle cerebral artery burst, instantly filling my head with blood. I passed out and apparently drove off the road and over a 60 foot bank missing every tree and not even rolling my Jeep Cherokee. Someone in a blue pick- up truck saw fresh tracks in the snow, found me unconscience, called 911, then left the scene when police responded to the call. I was rushed to Albany Medical Center and my husband, Nate, was contacted. When he arrived at the hospital doctors told him to say his goodbyes; there was very little hope of my survival. At that point my left side was completely paralyzed and my head was still full of blood. When it looked like I may live, after the clipping surgery, Nate was then told he may want to check into nursing home facilities because the reality was that I would most likely be a "vegetable". When I finally woke up I thought it was 2002 (It was really 2005) , but I could speak, and I recognized Nate and my family. When I was medically stable I was taken to Sunnyview Rehabilitation Hospital since I still had no use of my left hand and had VERY poor balance! About a week after being released from Sunnyview I had a very stiff neck and Nate says I looked up at him and said that my head hurt. He immediately put me in my Jeep and headed for Albany Medical Center, only 4.6 miles away. By the time we got there, I couldn't walk on my own. Scans showed an aneurysm at the base of the first one had ruptured. My artery was in such bad condition after my first rupture that doctors were unable to check for any more weak spots without causing further, possibly massive damage to my brain. So the second aneurysm was coiled to stop the bleeding and avoid 2 craniotomies in a month’s time. The bleeding stopped and a shunt was placed to relieve all the pressure in my brain (my ventricles weren't working due to all the bleeding). After the shunt was placed, I regained some of the use of my left hand. It was moving again and now I would just have to work on improving my fine motor skills. Months after being released from the hospital, my doctors cleared me to fly to Oklahoma for my sister's wedding. After returning from the wedding, I had a six month check-up and doctors found the second, coiled aneurysm was growing again. It was also discovered that due to the lack of blood through the arteries I had a “stroke” probably right after the first rupture. So to fix this growing, now giant aneurysm, doctors would have to preform a bypass around the clipped vessel to give me enough blood to feed my poor little brain. Since the vessels in my arms and legs appeared too small, the neurosurgeons decided to use part of my temporal artery for the bypass. After 23 hours,(yes 23 hours) of surgery the aneurysm was clipped and the bypass was working. The surgery was so risky I honestly prepared for not waking up. My bypass has since shut down and in another unexplainable way my clipped artery expanded enough to let the proper amount of blood flow through it. This bypass has now reopened which doctors also say 'never' happens after a vessel has shut down. By the way, if you do the math, my chances of even surviving two ruptures was 1/10 of 1%. I really have very few memories of that whole year and I only know the story as it has been told to me. My prupose is clear, By the Grace of God, I’m supposed to be here.
My recovery story is probably much like each one of you here today. It is slow and frusterating trying to relearn things you used to know how to do or could even do without thinking! There isn’t time to talk about all the times I messed up a sequence, or just couldn’t process information presented to me leaving me confused and exhausted. Oh, and the fatigue, the constant relentless fatigue. I know you all understand without explanation. My faith has carried me through along with the love and support of an amazing husband, family , and friends. A good friend once told me “Lisa, no matter how many times you fail, you are not a failure”, I don’t know about you but sometimes I still need to hear that from time to time! . Finally, in the spirit of this conference I wanted to share what I consider to make it all worth every pain-staking minute of recovery. The “silver lining” , if you will, is ALL the moments in life I didn’t miss out on.

Sunday, May 16, 2010

It's okay, Mom!

My mom came to visit me yesterday. We went to a couple of plant sales right around my house. It was a blast, then we headed for the mall :) While we were there, I was talked into upgrading my 'broken' cell phone (long story). After almost having a meltdown over it all because of all the questions I was asked to be able to do this and the loud background noise in the mall. My poor mom saw the "SOS" in my eyes and quickly got me to a quiet table near the back of the food court and got me a drink and a chicken quesadilla to help restore me!! As we were sitting there in silence, a severely disabled man pulled up at the table right next to us, my back was to him but my mom was facing him. Opening his bag of Combos was so exhausting for him that his head lightly fell forward and he fell sound asleep worn out by the effort it took. I saw my mom keeping an eye on him to make sure he was okay, and didn't need help. Then, as the man fell asleep, my mom's eyes filled with tears and she got up and threw our trash away. I looked back at the poor man all slumped over and knew right away why my mom had such a strong reaction. That is what doctors told Nate and my family would likely be my fate. I got up and wanted to hug my mom and say "It's okay, Mom" but I knew doing so would only create a scene in the mall as inevitably we would both be sobbing in the middle of the food court. Sometimes I forget that my family is all "recovering from my aneurysm too". This just reminded me of that!!

Thursday, May 6, 2010

a true story..................

Okay, so I got home from grocery shopping and was cleaning neurotically to unwind(this is after crashing for a nap, of course). I was listening to Twila Paris' song "God is in Control" because I still need to be reminded from time to time, when I saw today's mail sitting on the bar. Being highly "distractable", I sat down and began to open it, forgetting I was cleaning. The first letter I open is from the insurance company notifying me that our plan was terminated as of 4/1/10. The events of the last five years started flashing before my eyes and I must admit I could feel a panic attack coming on. So, I call poor Nate, who is at work, and tell him. Then the same events flash before his mind and he tells me he will take care of it right away. In the meantime, "God is in Control" is still playing softly in the background. I prayed about it and decided I needed to truly live what I believe; no panic attack. I continued to pray and called the Insurance company as Nate had instructed me. As it turns out, there was some simple "eligibility issue" between Nate's company and the insurance company. We were indeed fully covered with no lapse in coverage.
Also, Nate has taken another job (same industry, different company). His last day with his current company is tomorrow. This has been a very stressful few weeks to say the least!!! God is good :)

Monday, April 12, 2010

just rambling......

Okay, first a praise. Doctors recently did some testing for Lupus and other "vascular diseases". It was mostly, 'just to be sure' but the results came back fine. There are no concerns of larger vascular problems; at least for now:)I was praying all day for something to encourage me and this was an answer to my prayers!!
I was having a day where I felt totally out of control!! Ever have those days?? I felt a little like Chicken Little, "the sky is falling, the sky is falling". Instead of focusing on all the blessings in life I was fretting about Roth IRA contributions for this year, and years to follow, HOW SILLY!!! Who frets about that other than me, I mean seriously? Then it makes me start thinking about how my plan was to graduate college and get a good teaching job while I get my master's degree, of course. By then I figured I would probably want to have kids, cause that is how life goes, right??? NOT.... God had/has other plans and most days I happily accept this fact while other days I have a hard time accepting this. So now most days are filled with follow up doctor appointment and further medical testing and writing to people surviving aneurysms when they just need to talk to "someone who understands". Truly, I am thankful for all of this, I just needed to admit I don't always feel like I have it "all together" but seriously, who does?? I am right where God wants me and I am trying to "bloom where I am planted". Thanks for 'listening' to me rant as I work through things in my own silly litttle head! :)

Monday, April 5, 2010

Easter 2010

This is my niece, Brylee. She calls me "TT" which is short for "Auntie"!












Wednesday, March 31, 2010

random thoughts

So I am having one of those "I can't relate to people" kind of days! Yup, I still have them. Those "evil voices" in my head say "people think you're weird or slow or, or...." We all have those days, right? After my aneurysm I literally did not understand that if somebody asked me to do something I was "allowed" to politely say "no". I thought if somebody asked me, it meant I was supposed to do it. This caused for a lot of additional frustration for both me and Nate! After we finally identified the problem, I then had to tell everyone "I don't know, I will have to get back to you"; I would then run it past Nate who would say "is there anything on your calender? or do you have the energy to do that?". Very frustrating and sometimes I still have a hard time evaluating my own abilities/energy, plus I thought I was being treated like a child, which I absolutely hated! So even today, I always have to get back to people before committing on anything and I still run it past Nate who is better at helping me know my own boundaries! The other thing we had to work on was that there was a polite way to tell someone "no". Saying "no" and hanging up the phone is rude, who knew? So, I am getting better at it and slowly trying to understand/relearn the complicated world of 'relating to people'!!

Spring time always brings back more feelings of insecurity. I think it is because my first "real" memories after being released from the hospital were of walking around our house looking at all the plants I had planted. I don't know exactly why, but I was terrified to leave the hospital. Part of it could be that now home was unfamiliar and I was scared about how/if I was going to to be able to relearn how to live in 'real life' again. I remember clinging onto that cane that I had to use while Nate held my arm so I wouldn't loose my balance on uneven ground. However, as I am today able to walk on uneven ground and bend over to pick something up without head pain, it makes me so thankful for the Lord's mercy on me and encourages me that there really has been lots of progress; even though some days don't feel like it.

Tuesday, March 30, 2010

Something to think about......

"My Name is Pride" by Beth Moore

My name is Pride. I am a cheater.
I cheat you of your God-given destiny…
because you demand your own way.
I cheat you of contentment…
because you “deserve better than this.”
I cheat you of knowledge…
because you already know it all.
I cheat you of healing…
because you are too full of you to forgive.
I cheat you of holiness…
because you refuse to admit when you are wrong.
I cheat you of vision…
because you’d rather look in the mirror than out a window.
I cheat you of genuine friendship…
because nobody’s going to know the real you.
I cheat you of love…
because real romance demands sacrifice.
I cheat you of greatness in heaven…
because you refuse to wash another’s feet on earth.
I cheat you of God’s glory…
because I convinced you to seek your own.
My name is Pride. I am a cheater.
You like me because you think I’m always looking out for you.
Untrue.
I’m looking to make a fool of you.
God has so much for you, I admit, but don’t worry…
If you stick with me you’ll never know.

Friday, March 26, 2010

Just makes me laugh.......

So last night, Nate graciously watched "The Ugly Truth" with me. At the end of the movie there was a conversation that went like this....

"Mike Chadway: yeah it is scary, it’s terrifying, especially when I’m in love with a psycho like you!

Abby Richter: I am not a psycho!

Mike: I just told you that I love you and all you heard was psycho?! well you’re the definition of neurotic!

Abby: No! the definition of neurotic is a person who suffers from anxiety, obsessive thoughts, compulsive acts and—and physical ailments without any objective evidence of—

Mike: Shut up! …Then again, I just told you I’m in love with you and you’re standing here giving me a vocabulary lesson?

Abby: You’re in love with me … Why?

Mike: … ? but I am"


So, Nate looks over at me and smiles. He doesn't even have to say anything, I know what he is thinking "Lisa that is SO YOU". I laughed and said, "yes, yes it is" then followed by a teasing "but you knew that when you married me". We both smiled. Nate says "I'll still love you". We both smile and go about our evening!

Friday, March 5, 2010

"Facing my Giants"........slightly revised :)

Okay, so I will admit. I have changed the title of this post several times and have debated whether I would even post it or not. So here you go, I am posting it!
Originally, this was called "confessions of a 'worry wart'" and I was going to talk about fears keeping me back from fully experiencing life. I was going to tell you about how I worry about living near power lines, putting a cell phone anywhere near my head, tucking my pants into my socks to prevent a tick that might carry Lyme Disease. I admit that I won't even touch a shopping cart until I have used a sanitizing wipe on it. I could go on and on with all these little concerns that I live my life around. The Lord has really been working on me about this. It is a particular sin that I struggle with. I always have but, I now lack the energy to try to deal with my shortcomings so things seem to magnify and are often blamed on 'brain injury'. Any of you who know me well, know these oddities were present long before brain injury or aneurysm. This is not something I am proud of and recently I have been reminded that I should not listen to these "voices", so to speak. They are often the devil trying to discourage us and rob us of joy. I guess until recently I had never thought about it that way. of course since my aneurysm I have been tested and retested for everything under the sun. Doctors (and people) like labels so they call it "generalized anxiety disorder", "panic disorder" and "OCD". Boy, that is a lot to digest and does wonders for the self-esteem, right?? Doctors point to a brain injury as the cause but I think brain injury has just magnified personality traits/sins not dealt with previously.
So, why did I settle on "facing my giants"? Well, I have just described some of my 'giants' whether they are real or just imagined. The movie "Facing the Giants" reminded me that( 1.) The bible says "do not fear" 365 times (each day of the year we need not/are commanded not to fear. ( 2.) Nothing is impossible with God (read my story again if you don't believe me) But the one "giant" that I still have a hard time accepting/facing is constant fatigue. I no longer even remember what it is like to function without it! I have to be reassured several times a day that this is "normal" after what I survived. I still have to limit my activities to about 2-3 things in one day. So, grocery shopping, putting them away and then making dinner is all the energy I realistically have. If I do more than that it will sometimes still take me days of sleeping or resting to recover. Somewhere along the way I was told that my "executive function" (doing things without thinking) had been lost. At first even getting into my car was exhausting. I have to think about all the steps required to do so.....find the car,find the keys, click locks open, open door, etc. five years later I still have to do these things but they just don't take quite as long to recall. I am not complaining, please don't think that. I am totally and thoroughly grateful for being alive and being able to function at such a "normal" level. Like today, I lost my sunglasses, and forgot my cell phone. I was mildly frustrated because I didn't want Nate to worry about my not answering my phone and the tiny bit of light coming through the clouds was just enough to make my eyes feel like they were burning (my pupils don't dilate properly any more, making my eyes super sensitive to light). Anyway, I stopped for a few seconds while sitting in my car and thanked God that I was even out and about, then thanked Him that my head was attached to my body so at least I couldn't loose it (though I have been looking for my mind...haha). I was also thankful that I could now sit for a few minutes and relax and after closing my eyes I was able to continue about my day (after locating spare sunglasses in the Jeep)! Thank you Lord that "out of these ashes beauty will rise"!!


Beauty Will Rise by Steven Curtis Chapman
It was the day the world went wrong
I screamed til my voice was gone
And watched through the tears as everything
Came crashing down

Slowly panic turns to pain
As we awake to what remains
And sift through the ashes
That are left behind

But buried deep beneath
All our broken dreams we have this hope

Out of these ashes beauty will rise
And we will dance among the ruins
We will see it with our own eyes
Out of these ashes beauty will rise
For we know joy is coming in the morning
In the morning, beauty will rise

So take another breath for now
And let the tears come washing down
And if you can't believe, I will believe for you

Cause I have seen the signs of spring
Just watch and see

Out of these ashes beauty will rise
And we will dance among the ruins
We will see it with our own eyes
Out of these ashes beauty will rise
For we know joy is coming in the morning
In the morning

I can hear it in the distance
And it's not too far away
It's the music and the laughter
Of a wedding and a feast
I can almost feel the hand of God
Reaching for my face to wipe the tears away
You say it's time to make everything new
Make it all new

This is our hope
This is a promise
This is our hope
This is a promise

It will take our breath away
To see the beauty that's been made
Out of the ashes, out of the ashes

It will take our breath away
To see the beauty that He's made
Out of the ashes, out of the ashes

Out of these ashes
Beauty will rise
And we will dance among the ruins
We will see it with our own eyes
Out of this darkness
New light will shine
And we'll know the joy that's coming in the morning
In the morning
Beauty will rise

Oh, beauty will rise
Oh, oh, oh, beauty will rise
Oh, oh, oh, beauty will rise
Oh, oh, oh, beauty will rise

Tuesday, February 9, 2010

thankful....

I had an angiogram done on 1/25. It has been two years since the last one. The results were really good. The clips are holding and no other signs of problems with that aneurysm. Also, Dr. Boulos told me that my bypass which had shut down shortly after surgery was now open. He says this "never happens, once a bypass shuts down it stays that way". For some reason, I needed to use that bypass again. I personally think it is just a reminder that God is in control, not science, or medicine or even skilled doctors. These are merely tools God uses at His command! The sedation that was used really affected me this time around and with the high risk of stroke from the procedure, Nate and my mom were worried for some time after. My memory was like Swiss cheese again. I could retain little to no new information. It is normal for those with TBI (traumatic brain injury) to respond differently to sedation drugs and take longer to "come out of it". It was a terrible feeling! It was like I knew I had asked these questions and should know the answer but just couldn't. It reminded me to be thankful for how far I have come since the early days of diagnosis. I am thankful I have learned strategies for remembering things and piecing events together in a meaningful way! I also am so thankful each day for the days and events I have gotten to be part of since surviving my aneurysms. I was able to not only go to, but got to be in my sister's wedding, I got to meet three nieces and a nephew. I was able to attend Ellie's wedding and Cory's wedding! I was able to go to Jessie's baby shower and meet each year at the outlets in Waterloo for Christmas shopping. I am thankful each morning for waking up and getting out of bed all by myself. I am thankful I can look at a cereal box and recognize it is a cereal box!!! Most of all though, I am so thankful that God sent me a man to love me unconditionally through sickness and health, in good times and bad! Nate is amazing and not only does he still tell me every day that he loves me but he shows me too by protecting me and trying to make life easier for me every day. The snow is always scraped from my car when I go to get in it, the washer fluid is always full(and I could go on and on). These are only a very few of the MANY MANY things I am thankful for, and praise the Lord for daily! There are just so many little things I am thankful for each day now that I used to take for granted. I certainly don't have things all worked out but I am so thankful for so many blessings.

Monday, February 1, 2010

My Story!!

the now, infamous road!
Here is my story : In Luke 8:39 Jesus says," Return to your house and describe the great things God has done for you." I hope this gives you insight into my world now and should describe the great things God has done for me! Enjoy!
this is the bank I went over and the trees I missed on the way!

At my sister's wedding, not knowing
 the coiled aneurysm was growing!
February 1, 2005. I reported to my first job feeling fine and was driving to the second one when a brain aneurysm in my right middle cerebral artery burst, instantly filling my head with blood. I passed out and apparently drove off the road and over a 60 foot bank missing every tree and not rolling my Jeep Cherokee. Someone in a blue pick- up truck found me and called 911, then left the scene when police responded to the call. I was rushed to Albany Medical Center and my husband, Nate, was contacted. When he arrived at the hospital doctors told him to say his goodbyes; there was very little hope of my survival. At that point my left side was completely paralyzed and my head was still full of blood. When it looked like I may live, after the clipping surgery, Nate was then told he may want to check into nursing home facilities because the reality was that I would most likely be a "vegetable". When I finally woke up I thought it was 2002, but I could speak, and I recognized Nate and my family. When I was medically stable I was taken to Sunnyview Rehabilitation Hospital since I still had no use of my left hand and had very poor balance! About a week after being released from Sunnyview I had a very stiff neck and Nate says I looked up at him and said that my head hurt. He immediately put me in the Jeep and headed for Albany Medical Center, only 4.6 miles away. By the time we got there, I couldn't walk on my own. Scans showed an aneurysm at the base of the first one had ruptured. My artery was in such bad condition after my first rupture that doctors were unable to check for any more weak spots without causing further, possibly massive damage to my brain. So the second aneurysm was coiled to stop the bleeding and avoid 2 craniotomies in a month’s time. The bleeding stopped and a shunt was placed to relieve all the pressure in my brain (my ventricles weren't working due to all the bleeding). After the shunt was placed, I regained some of the use of my left hand. It was moving again and now I would just have to work on improving my fine motor skills. Months after being released from the hospital, my doctors cleared me to fly to Oklahoma for my sister's wedding. After returning from the wedding, I had a six month check-up and Dr Boulos found the second, coiled aneurysm was growing again. It was also discovered that due to the lack of blood through the arteries I had a “stroke” probably right after the first rupture. So to fix this growing, now giant aneurysm, Dr Popp and Dr Boulos would have to preform a bypass around the clipped vessel to give me enough blood to feed my poor little brain. Since the vessels in my arms and legs appeared too small, the neurosurgeons decided to use part of my temporal artery for the bypass. After 23 hours of surgery the aneurysm was clipped and the bypass was working. The surgery was so risky I honestly prepared for not waking up. When I did wake up I told Nate that, "I knew I was at Albany Medical Center because there were no golden streets(as I refered to heaven)". My bypass has since shut down because in another unexplainable way my clipped artery has expanded enough to let the proper amount of blood flow through it. Dr. Popp, the lead neurosurgeon on my case at the time, put his hand on my shoulder and with a humble reverence said "It was the hand of God that got you to this hospital alive in the first place". With tears streaming down my face I shook my head because here was the man that God used to save my life and he took no credit for it. It was so evident that God had spared my life even he, a renowned neurosurgeon, was willing to admit it. By the way, if you do the math, my chances of even surviving 2 ruptures was 1/10 of 1%. I really have very few memories of that whole year and I only know the story as it has been told to me. I like Don Piper’s quote in his book 90 Minutes in Heaven, “You prayed, I’m here”. I think that about sums it up. Thank you for each of your prayers for me! And so I ask you, do you know for sure you would go to heaven if you died? The Bible clearly tells us that the only way to heaven is to trust in Jesus blood to cover our sins that separate us from God. It is only by faith in Him we will be assured eternal life in heaven.

Days after the last surgery since, I was actually
 closing my eye that had been swollen open (yes open)!
When I was first diagnosed with a Traumatic Brain Injury (TBI), I had a wide range of emotions from,  "well, duh, just look at my head" (still swollen and stapled together from the craniotomy). To being surprised I had not aced the neuropsych test and fooled everyone! I had just lived through an aneurysm that burst while I was driving to work. Doctors had told my family that if I did miraculously live I would probably be a vegetable for the rest of my life. So what, if I couldn't count backward from 100 by 7, I was convinced I could never do that, not even before the assault to my brain. I remember being truly surprised that I hadn't fooled the neuropsychologist. I thought I had done so well ordering things, recalling names and repeating stories. I also remember the psychologist wheeling me out of his office after telling me I had a TBI. My dad was there in the waiting room and saw the look on my face. I said to him "I keep thinking this is all a dream and someone is going to pinch me and wake me up and I can just go back to my 'real life'". So, through tears I decided that it was okay to have a TBI; a small price to pay for still being alive, but this TBI (that I totally didn't understand) wasn't going to affect my life, I thought! I could do anything I set my mind to, right? What I didn't know was that indeed it would affect every aspect of my life. I would have to relearn to relate to people and what was appropriate to say. I have a tendency, like most brain injured people, to just say whatever I was thinking at the moment. As you can imagine this was a poor way to make friends or keep the ones you already had. I was also noticing my inability to multi-task in any way (talking on a cell phone while walking through a store was a disaster, crashing into people and products set up in the aisle). I could also no longer make a quick decision to solve a problem. Even going to get ice cream usually resulted in just picking the first flavor I saw and dealing with it later because I was too overwhelmed to make an actual decision. I wasn't even sure what I really liked anymore, anyway. "Are you sure you want bubble gum ice cream, honey" Nate would ask well aware of what I was doing, but not knowing exactly how he could really help me. I was stubborn, I was determined, and I was going to be independent again. Nate could have easily ordered for me because at that point he knew me better than I even knew myself, (doctors told him to let me make decisions even though it was very hard and that it would be, “good therapy” for me). So, Nate let me order for myself and I ate bubble gum ice cream.I was sick of being treated like a child even though in many ways that is exactly what I had become! At times I was mildly aware of it but most of the time I was just annoyed at the world. I was like a child at 25 years old, needing someone to hold my hand when I crossed a street. The first time, I went back out into the "real world" ,without a wheel chair,I was with my dad. We walked through the parking lot and into the store. I was determined to get inside the store (one track mind) and didn't even know I was actually crossing the street. My dad grabbed my arm and asked "did you look both ways before you crossed the street". My response was something like "what's that?". Lee Woodruff speaks of her husband asking what a mortgage was, I wondered what crossing a street meant. I also felt totally stripped of an identity. I first realized this in a meeting with an employment specialist for people with disabilities months after my injury. “What are you good at, Lisa? What are your strengths that an employer might want to know about?” she asked. I sat there, so exhausted from already answering questions. “I don’t know, I honestly don’t know”, I said as tears filled my big blue eyes. I sat there a moment trying to regain my composure (and looked for my tissue supply that I now carry because I find myself always crying)! I think I then said (with that kind of sarcasm that masks insecurity and pain), “Well I can cry anywhere, at any time, at anything, does that count?” “Well”, she politely smiled “I think you are friendly and eager to learn”. She was attempting to fill in some of the blanks for me. I can’t remember what else she said to me about myself, but the blanks would just simply have to be filled in, by me, over time! What I used to do with ease was now confusing, exhausting, and well, just plain frustrating! Being told I was acting like a child just made it worse for everyone! I didn't feel like I had any control over anything, not even myself! Cooking for the first time was my first inkling that things weren't just going to go back to normal right away. I could tell a therapist how to make spaghetti, but it is very different to actually do it. I was in a quiet isolated room without distractions then. Sequencing, I would discover, was now going to be a challenge even in the best situations. Distractions would only magnify the deficits. In everyday life I would constantly have to be reminded “look both ways, then cross the street”, or “shut the door, lock it, and then you can leave the house”. So, when I actually went to boil the noodles, the exhaust fan would be on which, in turn, added to the confusion for me. Then, there was the problem of figuring out how to actually "turn the stove on" (Step #1, which I so easily spouted off to the occupational therapist days before). I didn’t know my left from my right. I was spatially challenged, so the pictures by the knobs on the stove were only more confusing to my poor damaged brain. So, with a little help from Nate, my ever-patient husband, I got the stove turned on. Then I started the meat browning, Step #2. But, to get to browning the meat I had to think about each step; get a pan, find olive oil, pour into pan, put meat in pan, find a fork, use fork to separate meat. It is exhausting!! I was on a roll now, but then, as the meat was browning, the timer Nate had set for the noodles (knowing I would forget how long they had been boiling) went off. Oh no, what did that mean? How do I get the noodles off the stove while I am supposed to be watching the meat? I literally now had no idea what I was supposed to do, and now there was a timer going off. Things were boiling and browning, and the silly exhaust fan was still roaring in the background. I was quickly learning that things that would have just normally dawned on me, now didn’t. It seemed like I was unable to solve even simple problems I faced like what to do with boiling noodles! So out of sheer frustration, I threw a dish towel (that was over my shoulder) at my poor innocent husband, amongst my tears of frustration. I didn't even know how to make spaghetti and I didn't know how to deal with yet another loss either! Nate tried calming me down and made me simply step away from the stove telling me he would take care of dinner that night, possibly an instinct of self-preservation! That was the very first of many "meltdowns", as I call them. Once someone had specifically showed me how to do something I could then relearn it and duplicate the action the next time. I am thankful for the ability to relearn as pain staking and slow as it may be! Trying to balance the checkbook a few days later had a similar result, and this time my mother was also there to witness it unfold. Being the kind of girl who had it balanced to the penny each month it really bothered me that during my months in the hospital it had been neglected. This should be easy, I thought! Well, none of the numbers made any sense to me. Trying to put them from the register into a calculator was a nightmare. Numbers were lost and rearranged from the transfer to the calculator! I had a hard time even dialing the phone. Numbers did not retain their original order. Taking a shower also now required a nap afterward. There are “so many steps”. I have to think every time I take one; remove all clothing, start water by turing both all the way on and gradually shutting the cold off until you reach desirsed temerature, step into shower, place hand on wall for balance, to wash body; find loofa, find body soap, open container, squeeze soap into loofa, wash body, rinse body, rinse loofa and so on through washing my hair and using conditioner, if I had any energy for it!. I felt defeated, and frustrated that I was not able to understand. I was still determined this wasn't going to affect my life like this. I was going to prove the doctors and therapists wrong. Their silly tests couldn't prove anything, I thought! Acceptance would take a long time and many things would simply have to be relearned. Eventually I was just thankful that most things could be relearned, it was just the fatigue that has not been overcome yet, even years later!The other thing I still struggle with, even now, is conversation. Though most people would not be able to tell I have this problem, it is the most frustrating part of the disability, after the fatigue. Nobody can really explain why this is so exhausting other than by a shrugged shoulder, and “it’s all a part of your brain injury”. The best explanation is just that language is very complex! Whatever part of your brain that takes care of “doing things without thinking” was very damaged for me. Now everything took careful thought and consideration including conversation. Part of the problem was not being able concentrate on anything for more than a few minutes. I would slowly have to build my tolerance back up but, even still, it remains a challenge for me. I have grown very accustomed to saying “I don’t understand” or “I forgot to listen, could you say that again, please?” I hear words but my brain just doesn’t always process them in a meaningful way. Other times, I am still trying to process what was just said and figure out if the response I gave made any sense at all. Most people are able to listen to a person and formulate an immediate and spontaneous response, but this is exhausting for me. Not only do you have to “think quickly” (which I no longer am able to do), but you have to retrieve the correct words you are looking for which is another problem for me. So, sentences like, “do you see that gray bin at the reference desk” come out like this: “it is by that, ummm…., bin over there”, because I can’t remember the name for the color and what the name of the desk is. I know that this can be a common problem for anyone distracted or fatigued, but for me this is how I live, reaching and fishing for words! This makes for talking to people in general, and especially in large crowds with lots of noise and distractions, only mildly tolerable at best (and that’s on a good day)! I also have a hard time with the actual processing of language. I hear things differently than they were actually spoken or my brain just leaves out words that are unfamiliar or confusing to me. It makes it impossible to understand the sentence. Here is a classic story about my auditory processing deficits; I was in a store buying socks (because I can't get enough crazy socks) and the cashier said to me "I don't like wearing socks; I just go bare foot most of the time". I just smiled because I hate it when cashiers talk to me; I am so focused on all the steps of paying that I don't want to chat. However, I decided I should not be rude, so I said, “You would get along with my dad, he even throws hay with bare feet". She said, "He must have calluses" but I hear “he must have cows" so I politely answer “no, we have horses". She gave me this really funny, puzzled look (one that I am getting used to seeing) and I immediately knew I had answered her question in the wrong way. So, I said, “I must not have heard you correctly". She then told me what she really said. I agreed, and paid her for the socks. This happens to me all the time, and is worse when I am extra tired. Recently I was asked, “Lisa, why did you want to become a teacher?” I sat there motionless and couldn’t remember. It seemed like a whole other life to me, why did the old Lisa want to be a teacher? After some time I remembered it was because I wanted to help people. I wanted to make an impact on other’s lives and well, I also just loved learning. My heart was really with teaching children with developmental and learning disabilities (special education, minus the children who just had behavior issues). And, to be honest with you I really did not like “normal/regular” classroom teaching. I loved children with special needs! Then, it dawned on me. I am not teaching now because much like those children I loved working with, I have a disability that limits my ability to effectively teach. However, I have been given a different opportunity to help people by sharing my story with others, disabled or not! I can encourage and give others hope and share the love of a gracious and merciful God in a very powerful way, and, “ironically”, I have to relearn something new every day! I am truly thankful for many things about my new journey....... In his heart a man plans his course, but the LORD determines his steps. Proverbs 16:9