aimless Wandering and wanting to jabber

[Soundy]

I have been wandering aimlessly around site looking for a place to go on about life in general ...  ... lots of things going on right now with a return of AN issues or more accurately post -op issues that have apparently become life long issues for me  … but somewhat tolerable ones

I have been without lyrica waiting to see if Pfizer was going to keep supplying it ... 4 weeks without it has had a return of headaches , facial numbness , tongue numb on right side , twitch in eye , eye closing when I yawn ( I have winked at many people    ) ... also sleep pattern has went whacky again ... partly due to aches and pains and also due to having to run back and forth to help care for my dad  ... I wander if I have tumor re-growth by the numbness and weakness on right side of face but with insurance as it is I just can't afford an MRI right now to check on status ...

we got new deductibles and out of pocket levels awhile back... there is a  $4500  combined deductible and out of pocket on Bo and the girls  ... I am special and get my own ... $11,000  before they start picking up ... this is due to something in the Obama care plan that I have been told they can legally call me pre-existing until July 2 2014 , pretty much denying me coverage ... my surgeon said he thought he got it all but can't say he got 100% ... it is in the back of my mind when ever I have these issues resurface and makes me wonder if there was a tiny bit of Bennie left hiding and he has a clone of himself re-growing in my noggin ...

and fibromyalgia pain has made a return ...the lyrica did a good job of not only controlling my headaches but taking care of muscle pain and joint pain ...this has hindered exercise as that exasperates the pain ... as a result I have stopped losing weight ... and when I was getting more exercise I felt better all over ... mentally and physically

Fed Ex brought me a gift of lyrica this morning ... 3 months worth ...I wanted to hug him but decide to just shake his hand and tell him how glad I was to see him    ... been kinda out of it after taking first dose this morning  ... it took me a week or so for body to get used to it when I first started taking it ... I had weaned myself with last bit I had over three weeks taking it every other day then every 3 days then every 4 days  until I ran out of what I had  ... didn't have withdrawal doing it like that but the return of symptoms let me know I still need it ... now just have to get through the readjusting to taking it again ...

I feel tired and worn out all the time  ... I slept about 5 hours today ... not on purpose ... I was watching local news this morning and then all of the sudden it was 2:30 ... I jumped up thinking it was morning and by looking out the window just knew we were gonna all be late for school work and appointments ... patted side of bed looking for Bo and he was gone ... thought he had went to do morning farm rounds ... jumped up and took off down the hall to get girls up and they were missing ... and then realized Stella , my dog was missing too... they have at times in the past left me sleeping because I rarely sleep good ... Bo will issue no wake orders and it is against the law to wake me up ...he has made me late and made me miss things I was suppose to do with his orders , but he feels like when I do fall into a deep sleep my body is telling me I need it ... he is right but I was still rehearsing my get me up when it is getting up time  speech when  I wandered into the kitchen and saw 2:39 on the clock ...growled at myself and went out to get clothes out of dryer and put the wet ones from washer in the dryer ... kinda funny now but had my heart pumping and head pounding as my adrenalin rushed through my body setting me in motion ...

been wandering around house doing chores I was going to do today , walked sevral laps around yard , stopping to talk to the donkeys , goat , goose and chickens along the way ... and stopping in here  wandering aimlessly around the board ...catching up and gleaning insight ... fed family and now winding down ... have you ever had a day like that ? ... I feel like I have lost something ...

glad you all are here ... I talk to friends and they just don't get it ... glad they don't because to get it they would have to have some of the same issues I do ... I just feel more understood here ... hugs to all 

signing off , just rambling in Tennessee

[saralynn143]

Hey Soundy, you have so much going on right now. No wonder you are exhausted. Glad to hear that you have Lyrica again, I hope it helps.

Take care, I hope you sleep well tonight.

[Jim Scott]

Soundy ~

I'm sorry you have so much adversity to deal with but I admire your perseverance.  I'm glad to know that you (and others) can come here to vent a bit and express your frustrations and concerns.  We're empathetic because we care about you.  That you know this and lean on us, in effect, is very humbling.  Feel free to ramble here, anytime.  My prayers for you will continue as will those of many others, which is no small thing. 

Jim

[Mickey]

Hi Soundy! See your post and just wanted to wish the best for you... Take care of yourself with many prayers coming your way...Mickey

[Soundy]

Feeling kinda wonkey as adjust to lyrica again. But better than I did when I posted that. St ll havefacial numbness and funny feeling tongue. Hoping it passes when get back to full dose.

I have one friend that gets me and realizes that surgery in many ways was the beginning of my AN adventure. Surgery gave me the problems I have. It was not the cure all most expected. Bo is good and at times takes too good care of me. With his sister always being handicapped he is just used to medical issues that are a part of a persons every day life and rolls with the punches

Before I typed that I had spoken to someone that pretty much told me just get over it. I calmly hung up then was boiling. It isn't like I choose to have headaches or to stagger about. But I have decided that not understanding is their problem not mine. Also saw mt PCP Friday and talked to him for about an hour and he hugged me and told me to chill out and ignore who needs ignored.

Thanks for just being here. Like I said before, being understood makes a huge difference.

[spgreenfield]

Soundy -

I'm glad I stumbled onto your post tonight...I'm only about 6 weeks post op but frustrated.  And I understand a fraction of what you mean about the surgery making more problems than it solves!!!  My husband couldn't get this into his head and still I wish there was a shot or pill that he could take that would numb the left side of his face - causing the left eye to not blink completely and smart really bad when it gets dry (which seems to be about every 10 minutes!  So I resort to ointment that then makes me blind - so I am blind AND deaf on the AN side!!!) unable to balance and exhausted.  He's that obnoxious combination of high pain tolerance and quick healer from major surgery (he had his knee replaced almost 2 years ago and never once used the walker and only used 1 crutch....for a very short time)  He also never - I repeat NEVER has puked!  I can't believe that but we've been married for 31 years and I've never known him to puke and he says he never did prior to our marriage....

So here's why I'm glad I saw your post - because I'm feeling sorry for myself and not liking my "new" normal - I want my "old" normal back again!!!!!  I love to read (THAT I can do but sitting that long makes me dizzy again), I enjoy working on my computer but staring at the screen makes my eyes mad at me so I can't do it for longer than it will take me to finish this...  And I read about your journey - with pain, and insurance issues and everything and I am chagrined that I'm complaining!  I have nothing to complain about except that I'm not healed yet!  I think this time of life for me is teaching me more than I really want to admit.  I so wish I could make something better for everyone that I read about....but the truth is that I can't.  So here I sit feeling frustrated and sorry for myself when there's people out there like you with REAL problems!  So thank you for making me take my eyes off myself and find sympathy for someone else's rough journey...

Hang in there.  You sound like you're doing the very best you can and you should be proud of yourself for having such a good outlook!