Monday, November 28, 2011

Just Some Tips.................

For my fellow aneurysm/TBI survivor friends. Memory is such an issue for us, especially short term memory.  It can be very frustrating and at times embarrassing and overwhelming.  Here are some strategies I use in my daily life to cope. Yes, I have OCD and I taught special education for a year right out of college!!!!
* write EVERYTHING down in a planner you carry with you everywhere!!
* take a list of questions you have for your doctor (I write things down as I think of them).  I then bring the list to my appointment and cross them off as they are answered.  I write down things that I want to remember when I leave or I have my doctor write it down on a prescription that I can take home and show my husband!
My daily "survival kit"
* I have a "professional looking" three ring binder that zips up and has handles.  Inside it is a folder for each day of the week to put papers I need for that day.  It is also well supplied with 'post-it' notes, pens and a magazine to look at while waiting for an appointment! I take this everywhere and keep my smaller planner in my purse, because it is smaller and keeps me from trying to do a million things in one day, it simply doesn't have the space to write a lot of  'to do's',
* I found the book "Brain on a String" by PJ Long very helpful for helping me keep things as organized as possible.  PJ Long is a TBI survivor and also wrote "Gifts from the Broken Jar" which was very good too!!!
* I have a reminder set in my cell phone(calendar) to ring every night to remind me to take my pills.  It rings until I turn it off.  I admit that this works well but sometimes I do get distracted along the way and end up forgetting anyway, but it isn't too often!!
Most importantly find a "system" that works best for you and your "new brain".  Ask someone who knows you well, and you trust, for help if you can't do it yourself!! This is not 'fool-proof' and I still have my moments but this has really helped me and some of my daily my anxiety a lot! Hope it helps you too!!!

PS- I have recently discovered that a planner broken down by hour slots really helps me to organize my day better being able to even write when to leave my house to get to an appointment! I really should have listened to the Rehab Therapist years ago but it seemed unnecessary to me at the time, as I had not fully accepted my brain injury!!! But, alas after years of floundering and fumbling my way through things I have returned to this modified version of the planners they use at the Rehab hospital! My iphone also has a format like this so I may eventually switch over to that completely!
Planner by Day Timer
Now for my last "life lesson." It began early on with a list in the order I needed to stop of the places I needed to go since I could not look at a list and decide where I needed to be. So, before I left the house (even if someone was driving me) I sat down and wrote out the order of my stops. So, it might look like 1. Target-bring list 
               2. Hewitts-seeds (plant place)
               3. Library- (returns only today.)
And that my friends, would have been more than enough for one day. Likely, back then it would have been one stop then home and dinner being madewas a 50/50 chance. Now, I usually jot down on my shopping list where I need to stop. Now, I usually post quick things that might not make a shopping list like stopping for gas along the way! My job coach says, everyone could benefit from this strategy.  DO NOT, I repeat, DO NOT try writing a note while driving. You will be very, very sorry! But when you come to a safe stop write a quick note and stick it to your radio. Since I tend to obsess over things I usually am able to remember what I wanted to write. Keep it simple, a word or two!   My post-it is a loud color so I am more likely to see/notice it (a gift from a dear friend who 'totally gets me'!) I also carry post-its in my purse and write things down that I need to stop for and stick them to my radio face when I get back to my "car". You can thank me later ;-)

Tuesday, November 15, 2011


As my good friend Mer would say, "GGGGgrrrrrrrrrrrrrrrrrrrrrr" to this past week.  I gotta say I am just so tired of trying to talk people into doing their job.   Getting medical records sent to a new office has turned into an ongoing nightmare.  Now I am just so fixated on getting them ALL to the new doctor I won't give in!  I think you could just say my name in any doctor office and they will cring, but, I am determined that my records WILL get to the new office.  The whole process has left me so exhausted and burned out I should probably just give up on it but,alas I am me, so I won't. I have lived through two ruptured brain aneurysms, a stroke and live with a TBI, JUST SEND MY RECORDS ALREADY!! Seriously, I am so sick of getting that "you're a neurotic, crazy person" look!! I get really, really sensitive about this(except in the company of friends and family who will love me "just the way I am")!! I don't like being this way BUT this is what I have been driven to!

I am all worked up about my records and a story about Rep. Gabrielle Giffords comes on the TV and suddenly my petty problem doesn't seem so big.  It reminds me of my own recovery and I begin to cry.  It hits a soft spot that has still not healed, and it may never. I think it will always "hit too close to home".  In her story 'Gabby' talks about how doctors only allowed her to know small pieces of her story at a time.  That is how they did it for me too.  When I woke up, my family simply told me I was "in a car accident".  I was so confused about why I had no memory of it! Then at some point the doctors told me I had a ruptured brain aneurysm.  My family wasn't sure how I would react and wanted a doctor there when I was told. I was on so many drugs and was so confused that I just said "ok", and that was that.  Then, they sent me to rehab where I was told, "you have a brain injury".  I then first witnessed people literally "flipping out" over the fact that I was alive.  I think that even 6 years later I am only slowly beginning to grasp it.  Perhaps I will never grasp it and that's okay.  I do need to work on accepting what I lived through, and the reality that my limits are different now!! I look fine and actually usually function somewhat "normally" so it isn't always easy to 'believe' how hard it is for me to carry on and 'just live life'. The one thing a regret a little now is that I didn't 'let' anyone take many pictures or videos of my therapy/recovery.  At the time, I just thought it was so awful that I didn't want any documented reminders of it.  I could not imagine that there would ever be a time when I would want to share it or look back myself.  In my head, it was just SO terrible it should never have to be revisited!!! Now though, I watch 'Gabby Gibbons' and Bob Woodruff's stories and how they have helped others understand recovery better and I am thankful they didn't have my "short-sightedness". They actually let/encouraged their recovery be documented!  I am thankful for the pieces that my family was able to slip by me and I will continue to write about my recovery or what I remember or have been told in an effort to reach those who so desperately just need someone to relate to, who has been there, and struggled with that too!!

Thursday, November 10, 2011

can't explain me........

I can't even tell you how fried your central nervous system is after a ruptured aneurysm/stroke.  I grind my teeth at night (have since I was little).  Now-a-days I think I get my tongue at night too leaving it "sore" all day. I have asked two doctors and a dentist about it.  They all think it looks "perfectly normal", but to me it is always sore/sensitive.  I am beginning to think I am completely crazy as another doctor guesses what might be causing it.  I think I may have to resort to the expensive mouth guard from the dentist and hope it goes away, so I don't get that look like,"you're fine, you just freak out too much"......MY NERVES ARE FRIED, Yes, EVERY little thing drives me more nuts than I think I ever was before (YIKES)! My poor doctors, I think they have given up with me :-)

Wednesday, November 9, 2011

My attempt at "making lemonade"

I am considering these 'conversation starters' from This way, if I am acting "strange" people won't have to

"Brain surgery? Been there, done that!" Copyright
"I fought an Aneurysm and I Won"Copyright

I already own this one...........................

"I'm in a forest of crazy" Copyright

Thursday, November 3, 2011


I would not call myself a drama queen, at least I don't think I ever used to be.  However, since my aneurysm my life seems filled with it.  And I really hate drama, unless it is on a stage intended to entertain, and even then I sometimes find it stressful!!! A simple thing like having records sent to a new doctor turned into this big battle, where I was forced to 'threaten' the office with calling their corporate office and filing a complaint.  Are you kidding me??? They are my records!  The story goes like this.  In August, I, along with 3,000 (I was told) other patients, were informed that our doctor was 'no longer affiliated with Prime Care Psysicians'.  No advanced warning, no smooth transition to a trusted office.  Nope, more like 'good luck, fend for yourself suckers'. Now any 'normal' person would simply find a new doctor assuming they all have a medical degree.  NOT ME! I have been with this PCP doctor since before my aneurysm.  She knew my neurosurgeon team and I trusted her! Everyone in the office knew me and it was familiar. Upon finding out of her leaving her practice I contacted my neurosurgery office and, as always, they spoiled me and got me a list of doctors they and their patients like or trust!  So, after hours of waiting on hold to ask if doctors accepted new patients, and looking up how people rated the doctors online, I finally choose a new doctor (I still can't believe a doctor could be younger than me). So, in the 9 years of being with the previous doctor I never once had my records sent to any specialists I was supposed to see.  The office staff always blamed it on the doctor holding them up for approval, but I really liked the doctor, and she really knew brain injury so, I just 'put up with it' .  I suspected that my old doctor was only part of the problem so, back in September (as soon as humanly possible for me), I sent my release form to their office for the records to go to the new office, with a note specifically stating they needed to be sent by October 27 for an appointment.  Last week, I checked with the new office....NO RECORDS. I called the old office who assured me they would send a note to the records coordinator and would be sent ASAP, even though I had "volumes of records, that must be retrieved from storage"(that was the excuse for not sending them)!!  I still had my doubts.  Monday I called the new office again....NO RECORDS. My rescheduled appointment was the next day, and I am NOT a simple case, I didn't have the energy to explain my entire medical history again, it is so hard to constantly rehash it!!! So, Monday I marched myself into the old office to take care of it in person.  The records lady was 'out for lunch'.  The secretary wrote a note and assured me they would be there tomorrow.  Now, if you know me, I fixate on things (some call it 'obsessive' others call it,' persistent', while some just find it annoying).  After running one errand I went back to the old office and there was a different secretary this time.  The records lady was still not going to talk to me because she was "busy working" (on what, I'm not sure).  "What is it that you want me to do??", she asked.  "I want somebody in this office to look me in the eye and promise me the records will be there tomorrow", I said as nicely as I could! I got the usual eye roll and defensive, "I don't think it is very professional for you to ask me to look you in the eye and tell you those records will be there.  And, just to let you know we have 30 days to release them ".  Now I am just so mad I can't even think and reply, "YOU ARE WAY OVER YOUR 30 DAYS, YOU HAD MY RELEASE FORM IN SEPTEMBER, PLEASE HAVE MY RECORDS THERE SOMEHOW TOMORROW OR I WILL FILE A COMPLAINT WITH PRIME CARE." (Thank you to my experienced friends who helped me write down a response before I went there, knowing what would happen from their own experience)!
As it turns out, I went to my appointment and was scheduled for the wrong doctor at the new office.  So, yesterday they had an opening for the doctor I really wanted.  I went to her and I really, really like her.  You have no idea how thankful I am, and the records were there. They were all annoyingly out of order, which I suspect may have just been out of spite. I do, however, find it hard to believe they are the complete collection since the new office 'only' had 103 pages.  I have seen my current file and there are way more than that just in the one I saw.  I suspect there are some missing files!! I am just so tired of the drama and of nobody doing their job and of nobody caring! But, since I got the flu shot in one arm and tetanus booster(out of order records= new doctor couldn't find vaccination records) in the other, I will fight that another day when I don't feel like I've been 'hit by a bus'.
Not 32 yet, thank you very much!!!
Upon arriving home from the new doctor, I was ready for a nap!! I glanced down at the new prescriptions she gave me and noticed my age on them was 32.  I panicked, I thought I was 31!! Was I really turning 33 this year???  I got out a calculator and, it said 32, also. Now I really thought I lost it completely.  Now, I am thinking, "great now I have to learn my age again, I thought I had gotten beyond that!!!"  It then dawned on me that it was not December yet, so this year I will turn 32 not 33.  The computer and my simple calculator calculations did not take into account what month it was in the year, just that this year is 32 years from the year in which I was born!! All is well, prayers about a new doctor have been answered!!