Tuesday, January 31, 2012

further clarification.....

   I went to have the stitches from my biopsy removed and was able to talk to the nurse and aks her all sorts of questions, so I would understand what "atypical cells" really meant!! Basically, it was an "Atypical Dysplastic Nevi", relatively benign. The doctor will go back in on the 21st of February and remove all remaining borders so it doesn't come back and potentially be a problem!! This is MUCH, MUCH better news than I originally thought!!  I thought that all atypical cells meant automatic melanoma. I am very thankful to be wrong, yet again!!! I will just have to keep an even closer watch now, since my skin is SO fair, and now have a confirmed atypical mole, my chances of problems in the future are much higher than most people (like I haven't heard that a million times before). My sister just calls me Casper (out of love, of course).  So I will continue living in my ghostlike, shade loving, cave dwelling state, as far away from the sun as I can be :-)

Monday, January 30, 2012


My dermatologist called this morning and said the mole they removed last week had "mild/moderate atypical cells".  This means they will go back in on Feb. 21 to remove all the borders. They will then test that to ensure all atypical cells are removed! Please pray this will take care of the problem as they say it should.  Also, I will be having a lesion on my tongue removed next Monday, Feb 6.  All of this on the week of my 7 year "annie versary" (the anniversary of my aneurysm rupture). Thankful for the reminder that God is truly in control of all these things.  It is just emotionally draining for me and I need lots of Grace this week!  Thanks for your faithful prayers for God's continued Mercy on me! On my window sill, in my kitchen, hangs a card that says "Trials are not enemies to faith, but opportunities to prove God's faithfulness".

Thursday, January 26, 2012

just life updates!

      Sometimes I truly feel like my life is consumed with doctor appointments.  I am always going to a 'follow up' for something!  What I thought was going to be a quick check at the dermatologist, ended in removing a questionable looking mole. Now, when I filled out paperwork I'm pretty sure I checked "yes" after the question "are you allergic to bandage adhesive?".  Since I am on 81mg aspirin, I bled a little more than some(not that bad really), requiring the BIGGEST bandage they had.  Now I will spare you from a picture of my flabby, "untoned" tummy with a rash in the perfect shape of a Band aid, you're welcome!!!! Stitches are nothing compared to the reaction to bandage adhesive.  Let me just mention, that while in the hospital after my aneurysm, doctors/therapists used "Kinesio Tape"  try to stop my shoulder from separating further while still paralyzed.  When the tape was removed so was some of my skin!!! I am trying hard not to fixate on the biopsy results but, I am me!  The week after next I will have a "funny looking" lesion removed from my tongue, yeah not going to lie, I'm not looking forward to that one!!!!! So, now I will officially look like I have been hit by shrapnel in a different sort of war (a medical one) but better safe than sorry. Please pray with me for good, accurate results and the strength to make these appointments and wait for reports to come in, Thanks!

Monday, January 23, 2012

"What Every Brain Injury Survivor Would Like You To Know" - Author Unkown

I finally found the link to this article: Excerpted from Lost & Found: A Survivor's Guide for Reconstructing Life After a Brain Injury by Barbara J. Webster. © 20ll by Lash & Associates Publishing/Training Inc.   with the assistance of the "Amazing" Brain Injury Survivor Support Group of Framingham, MA. click here for their article!

I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside.Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

If there is more than one person talking, I may seem uninterested in the conversation.That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.

Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.

Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.

Please have patience with my memory. Know that not remembering does not mean that I don’t care.

Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.

If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.

If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)

You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)

If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me

We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.



Saturday, January 14, 2012

visiting and other random things!

I had an appointment yesterday with an ENT.  That morning I had already tried to take my glasses off when I woke up instead of putting them on.  I should have known it would be "that kind of day", the foggy brain day!! While this should probably stop me from living life that day; it never does, I usually just try to be extra cautious  and do the things I need to get done, as well as I can!! I made it to the ENT (new doctor for me), I was feeling ok , so I decided to visit my dear friend who was back in the hospital with heart related issues.  Now I have been to this hospital several times.  I parked and after a confusing ride on the elevator (don't ask) made my way toward the hospital.  The hospital is doing some renovations, great, new things are SO hard to "adjust" to, but I was determined to spend some time with my friend !!!!  I found the ER entrance and asked the girl sitting at the desk which room "M" was in.  She looked up the name and told me room 32 then quickly rattled off a series of right/left turns.  Usually, I have no shame and I ask for clarification or for a repeat of the directions, by rattling off the part of the dirction I actually got (which is usually only the first two commands).  However, on this particular day I got her first direction and decided "I'd probably just see the ER once I got in the hall".  I was wrong....at the end of the hall I decided to ask a transport person where to go.  He directed me to the third floor in very broken English (there was a point in time when I would have rudely corrected his incomplete sentences-not realizing it was rude, of course-,but this time I just said, "thank you" and was on my way, ah sweet growth!!!!). I had a feeling his directions or my translation of them were not right. When I got to the' labor and delivery floor' I knew I was in the wrong place. I got out of there just as fast as I could and traced my steps back to the ER hallway.  The same girl was sitting at the desk.  I asked her for the directions again, but this time asked her if she could say it slowly (poor girl).  Seeing my obvious confusion, she walked me to the hall and pointed out the 'double doors' she had apparently told me about earlier with her left/right commands.  I took a deep breath and went to the double doors labeled as "Authorized Personnel Only".  I take these things VERY literally these days but decided to enter anyway, since the girl that gave me the directions was nodding her head.  Upon entering, I found my friend with a little help from a kind nurse! My friend had just been released, since I took so much time wandering aimlessly in the hospital.  My head was in such a knot now, I felt like I needed to spin the other way and start over again! As I walked out with my friend and her hubby we passed an elderly woman clinging to a door in order to not fall down.  I just raced by so focused on the act of walking I didn't even notice this poor woman.  My gracious friend noticed her and stopped to help her!!  She found her a wheelchair while her husband found a nurse that may know where this women needed to be! I just stood frozen still trying to figure out how exactly I had gotten there!!! I was so humbled by this act of kindness and I wondered, how many times a day am I so focused on my own problems/daily activities that  I walk right past people who I could have stopped to help?? Clearly, I'm not going to give directions since right/left confuse me.  But, I could get this lady a chair to sit in or even just noticed her clinging to a door!
    To make a long story short, the visit ended with my gracious friends driving me around the parking garage to find my Jeep, whose exact location was a bit foggy, despite the photo I took of the floor I parked on.  The Jeep was found and we had a nice lunch together (I followed them to the restaurant, since I was clearly having a foggy day)
   The very next day, I went to a dentist appointment.  After coming home Nate was teasing about my "dirty Jeep" from driving it in the rain.  I look at him and insisted that I "didn't go ANYWHERE today".  He gives me a "seriously" look.  I insist, I stayed home, then it suddenly dawned on me, I went to the dentist earlier, DUH!!! This is one reason why 'small talk' about my day/week is so frustrating!!! It certainly takes me a few/several minutes to pull up those files in my mind!!
   So, there are my random thoughts for the day!!

Monday, January 2, 2012

Christmas festivities

        Since my aneurysm, I just "brace myself" for the Christmas season, I didn't even have the energy to think or write about it until now, after a few days of quiet and sleeping. And, I confess all my shopping was done online at Amazon.com.  I can't even imagine venturing out to a crazy, busy store.  Between decorating the house, planning a large meal for Christmas at our house with Nate's family, then packing for a trip to my sister's house to celebrate a second Christmas with them, I completely depleted my resources.  I usually live, a very quiet structured life to cope with my new limits/disabilities. You can only imagine the fatigue and confusion that accompanies me around Christmas time.  It all seems worth it when I look back and see pictures of making snow angels, shoveling snow, eating snow (not yellow snow!!) and yes, even surfing in the snow!!!

There was mixing up scones for a

TEA PARTY with "TT" (yes, I am TT, short for 'Auntie'),

 playing "peek a boo" with brother B,

Celebrating  "Uncle Natey's" birthday,
and, of course, there were GIFTS of the material kind.

Amazingly, there was still energy for B to pretend she was a rock star,

and then, "TT" just need a 'silent night' (hahaha)

So, I guess the weeks of recovery will all be worth it and by next Christmas they will all just become cherished memories as I do it all over again, Lord willing!