Debbi Bifulco Update

[Debbi]

My Mother's Day update...

I woke up totally exhausted this morning (yep, that would be the much-discussed fatigue everyone talks about post brain surgery...)

Had tea with my parents before they took off to run some errands; then asked Willie to take me "on the road!" I very carefully went up and down our road a couple of times before venturing out onto Rt. 206 for a quick jaunt. All highway lines stayed in focus and I felt cautiously confident. I even managed to park directly between the lines at the local mini-mall - a big event! I am not ready for much more that a quick trip at this point - still have some problems if I turn my head too fast; and the dry eye is very distracting. However, if I need to run somewhere local, I am good to go! So. that was today's milestone.

Willie decided to host the Moms for a late lunch/early dinner today - so he set about preparing a rotisseried chicken, baked acorn squash, sauteed mushrooms and a plentiful green salad with fruits and nuts. Dad served as his sous chef and I must say that the men-folk did a wonderful job! Mom, Willie's mom, Loretta and I enjoyed a wonderful meal - and I allowed myself to be waited on hand and food (no easy task for me!)

Had to take two naps today, however, because I was just so tired. Although I know fatique is part of the whole recovery process, it is quite daunting to have such a total lack of energy. My mind wants to do all these things, but my body just isn't willing. I had hoped to go visit Phil (father in law) in rehab today, but just couldn't have managed it. Sigh.

I am easing back into work tomorrow, only an hour or so. It will be good to feel as if I am returning to some sort of normal activity, even if it is very limited. I also hope to be able to get out and walk a bit tomorrow if the weather isn't rainy. Goals, gotta have goals!

And speaking of goals, yesterday I took two little walks and had company for about an hour (Kura, Lynn and Karen made the trip out from the city - wonderful medicine for me!)

So, off to bed and more rest - tomorrow is another day!

Debbi - from the streets of NU...

[leapyrtwins]

Debbi -

Another milestone!  Your progress is truly amazing 

Don't get too exhausted returning to work tomorrow.  It's best taken in small chunks of time.  I think your plan of only an hour or two is a good one.

Good luck,

Jan

[wendysig]

Debbi -

Sounds like you are continuing to improve by leaps and bounds, metaphorically speaking anyway!  Glad to hear you are doing so well.  I imagine another step toward the more normal things in  life will only make things better.  Just make sure you listen to what your body is telling you and try not to overdo it.

Wendy

[Melissa778]

WOW Debbi!!!!  You are amazing.....you're going to be a hard act to follow! 

Melissa

[Debbi]

Melissa-

You're getting so close!  How are you doing?  I'm sending you a big hug, because I know how hard these last few days are.  Just treat yourself well and try to grab some quiet moments when you can.

Debbi

[Melissa778]

Quiet moments don't happen much around my house....dog, kids.....AGH, but I'm goign to miss them so much while I'm on my little "vacation".  I've been doing lots of cleaning and stocking the pantry for the hubby.  Everything is in order at home and Wednesday I am having a family photo done with the kids, and we're off to the zoo for a family day before my husband and I leave for the hotel.  I'm nervous with anticipation and I hate not knowing what my outcoem will be and how the next week or so will go.....I'm a planner....I like to know what will happen when....so this is rough for me!!   The hosptial called on Fridaya dn they have pushed my surgery back two hours.  Instead of surgery at 7:30am, we dont' have to be there until 7:30am for the 9:30am surgery.

Melissa...72 hours to go!

[Jim Scott]

Debbi:

You're recovering quite rapidly and the short drive is a definite milestone.  Of course the fatigue is frustrating.  I felt exactly the same way when I came home from the hospital.  I'm a list-maker ('Things to Do') and I had no energy to 'do' much at all, so I delegated to my wife and adult son, as needed, but I wasn't totally comfortable doing so.  It passed, as will your fatigue.

Your Mother's Day was clearly enjoyable and the food must have been great, as was the company.  Your support system seems to be functioning at 100%!  Debbi, you're doing fine and I'm confident that you'll ease back into your normal mode in no time, but do have a little patience and don't overdo it and risk a set-back.  Your recovery is, as you know, inspirational and your updates welcomed and appreciated.  Thank you. 

Jim

[MaryBKAriz]

Hi Debbi,

When I read of your exhaustion AND all the things you did when exhausted, I was truly amazed!!!! You are one tenacious cookie! You go girl! I do agree though, please also take care to not over do it. We love your inspiration!

Mary

[MaryBKAriz]

Melissa,

You will be in my thoughts and prayers. It sounds like you are prepared. The last hours of waiting have to be difficult. Remember we are cheering you on! I don't know if told us or not, but is anyone going to be posting for you, so we can follow your progress?

Take Care!

Mary

[Debbi]

Thanks for the kind words, Melissa, Jim and Mary.  Yesterday was definitely a "hit the wall" day - I was SO tired all day.  Feeling a little betrer today, but still very tired.  I had hoped to get out for a walk today, but it is windy and damp (and I can't tolerate the wind in my non-blinking eye), so I am going to just stay in today.  No doubt I'll take a little nap this afternoon - seems to be my pattern right now.

I am planning to go out to the local diner for an early dinner tonight (I've got a hankering for an egg white, feta, spinach omelette).  I have only been out once since I got home, and would like to try it again just to see how I do with noise, etc.  We'll go early, so the noise shouldn't be too bad.  I also want to see how I feel in terms of being self conscious about my face.  Seems silly to be so worred about that, but I am.  Probably making too big of a deal of it, but it is funny the things that you worry about.

I am launching into my first coaching session with a client today - she's one of my favorite clients, so it will be good.

Debbi

[Cheryl R]

Give yourself another week and there will be a big difference in how you feel.      I can have a good day and then evening still feel tired some.                It is maddening when you do feel alot better but not  completely normal yet.
  Adjusting to the facial palsy is hard.           I have been thru it twice on my right side and the last time was several months to improve as had a facial nerve graft.               Do not worry though that there will be damage if it does take alittle while as facial muscles are of a different type than other muscles.          You just have to let the facial nerve heal so the muscles will work in time after there is healing.
You are doing super and things do improve in time.                       Cheryl R

[Debbi]

From my blog - a couple of rough days, but back on the road again...

Well, everyone said that there would be bad days along the road to recovery … I got a first hand, up close look at fatigue these past few days.  After having to nap twice on Sunday, I was sure I would wake up Monday ready to tackle the world – wrong!  I woke up bone-tired, which was very discouraging.

Managed to stay up until after lunch, but then slept for several hours.  Then, as I was sitting there feeling sorry for myself, I had a thought…  wonder if I am going through “withdrawalâ€? from the steroids?  I knew that steroids cause sleep interruption and excess energy, so it seemed like stopping them might cause fatigue?  I immediately emailed my surgeon with the question, and he responded (with his normal speed) that yes, indeed, fatigue would be common as I end the steroid cycle.  He said it should pass in a few days!  Yay!!!  I felt better immediately!

So, my Big Events for yesterday were to get back to work – I had a call with one of my very favorite clients, so it wasn’t really like working at all – and to go out to eat!   Mom and Dad and I headed out for an early dinner at the local diner – egg white omelets with feta and spinach for everyone.  Noise level was low, no one stared at me, and all the food stayed in my mouth (ha!) – a victory!  Isn’t it funny how our perspective of success changes???

Meanwhile, Phil is still in rehab while they try to get him mobile again.  His hip is still healing, but he is progressing very well.  I am hoping to get over to see him this week, at least for a short visit.  Maybe we can compare incisions!  (Okay, I know that is pretty weird, isn’t it?)

Today appears to be a beautiful day, so I am planning an hour or so of work, then perhaps a walk outside.  And, a nap …

Debbi (with my own birds chirping in my ear...)

[wendysig]

Debbi -

Once again, you amaze me with you stamina and positive addiitude.  Everyone has their good and bad days.  You are one determined lady amd I'm sure your recovery will continue to be amazing!

Wendy

[Debbi]

Progress continues - after a kind of sucky Sunday and Monday, the last two days have been very encouraging.  I hope that all of my fellow posties have similar expereinces - and for those who are trailing me by a week or so, I want you to know that each day I see litle signs of improvement (not always fast enough to please me, but if you pay attention, you'll see the progress.)  Progress is measured in inches, not feet...

Here's the latest from my blog, for those interested...     (Emoticon wink since I can't do it myself yet...)

It is amazing how much better I feel now - I think just having a reason for the fatigue (yea, because brain surgery wasn't good enough!) made a big difference in my attitude.

I've continued with about an hour of client coaching a day, which seems to be the right pace for me. Yesterday I succumbed to the nap again, but today I managed to power through (which I may pay for tomorrow... but what the heck!)

Yesterday I did my first post-surgical gardening - planted the basil and rosemary plants that Kura brought this weekend - boy, that felt good! I had to sit down next to the pots, becasue bending over is so NOT a good idea, but it worked well. It is very weird to be moving so slowly, but I am kind of getting used to paying attention to the limits that my body is imposing.

I really am so fortunate that my balance has come back so well. The only time I really feel precarious is if I get up too suddenly, turn too fast, or when I get up at night (the combination of eye patch and a dark room is very disorienting.)

I talked to Hope yesterday - she had surgery about 3 1/2 weeks before me, so it is really good to hear her progress . We compared notes on the whole facial thing - lopsided smile, eye that won't tear, etc. It was good to talk to someone who knows exactly what it feels like. She also gave me a tip on a different eye drop, so I dispatched Mom and Dad to Wal-Mart today in search of the new elixir (and I like it!)  I've seen it mentioned elsewhere here, but for those who don't want to search it is GenTeal, moderate to severe eye gel.  Lasts longer than the drops but doesn't make me all blurry - wahoo!

I went out for my first solo walk today - didn't get real far, but I felt good! I had the trusty collie with me, not that she provides any level of protection, but hey....

I am trying to make sure I challenge myself at least a little each day. I sat out on the patio for quite awhile today, listening to various noises and trying to tell where the hell they were coming from. I haven't decided how I feel about SSD yet - really soon to tell. Right now, I am just trying to take some time to process each new sensation without judging it. I am almost ready to try a more challenging dining out experience - I kind of want to test the ambient noise thing a little more now. I'm feeling quite a bit of anxiety about that, so I figure the best thing is to just put myself out there - face down the fear!!

I am feeling very at peased with things today - it's a good day!

Oh, and I ate SOUP!!!    Mom made a wonderful veggie chicken soup yesterday and I managed to eat TWO helpings without completely embarrassing myself!! See what I mean about the little things?  Can sushi be far behind???

Debbi - chillin' in NJ   

[wendysig]

Debbi -

You had a beautiful day for a little light gardening, glad to hear you enjoyed it!  You have a graet attitude and I'm sure that is why you are having so much success.  I'm sure the SSD thing will take getting used to and even be a downer sometimes but I'm sure you'll overcome that too. Keep up the good work.

Wendy