It took me about 24 hours to come to terms with myself to go get an xray just to make sure I was ok. A precaution. I am okay, thank goodness but I was hesitant to get them. You ask why? I had no symptoms of anything. No pain, no hurting, nothing. But then I looked back and revisited when I started to hurt, limp and contact doctors pre-op and I was at a stage 4b!!!!!! I always have to remind myself that my pain tolerance is extremely high and to reevaluate the situation at hand. I did and like I said, after 24 hours can to terms to get the xray, just to make sure. Sure enough I was/am ok but what a relief that was!!!!!

Every movement I made I thought...what was that?....was that a pain.... Did I feel something? Good greif! Bottom line, its always best to be safe than sorry.

All is well thank goodness again,
Star

I did it! I entered and had a number pinned on me 1005. I did so well, it was challenging but did not hurt. If it did or I felt I couldn't do it, I would stop. I wanted to see if I really am doing as well as I think I am. Apparently I am. I am thankful daily that my obscure operation has been successful! Knock on wood.I did this 5k alone and did not advertise it since I am not like that. I wanted to see if I could do it for myself. Then after I told a few people, but not many. I think I can do the Relay for Life in a few weeks.

I placed 1112th out of 1439 and finished in 50:08. Out of 760 women I placed 542nd.

For 35 to 39 year old women I was 54th out of 79 finishers.

Can you believe this!!!! I walked a 5 k! Crazy stuff! Just wanted to let you know I been doing so well. I am thankful every day that I can walk. I know someday that could change but I am sure glad it's not today.

Wow have I come a long way! Sometimes I amaze myself!
Star

As for pain, I haven't had any pain (knock on wood) since the epidural had a kink and no pain meds were in my system post op. That is the last pain I can remember...maybe I blocked all other pain out...who knows, but I will never forget that pain! ;) I was pretty bad myself with a stage 4b no collapse but anytime it was going to. Everyone is so different ... there is a chance they don't get all the dead bone out before the graft is put in...therefore the AVN progresses...sometimes there is a small dot of AVN in a different location that may have not been detected because it was before a 0 stage...sometimes those with 30% recover slower than a person with 80%. It is really hard to say since there are so many variables in our lives. I do know exercise produces blood flow but check with your doc before any exercise. The pool is real good for me since its is not weight bearing unless I make it be (shallow end of pool).

Also, like both of us said, they say that some pain may not be 100% back to NO pain at all. Infact it sounded like that would be the exception to the rule.

Some have had a THR already, some are going to have it, some have limited pain and some no pain at all.

I am doing fine, normal activities yes, I am not suppossed to run or rollerblade or any impact exercise...which I am ok with. I used to rollerblade ALOT but a good trade to be able to walk. I can look back at all the things I "did" do pre-AVN and I am thankful...I did ALOT and I am fortunate that I can say that I did certain activities. Some people aren't as fortunate. I walk the stadium, up and down the stairs, back and forth making sure I say hello to my friends at the park.

Two years ago the doctor demanded that I NOT do the walk at all. I
still wrote out all the names on the luminarias that get lit around the
track. I did ONE lap--- that took me 45 minutes (it's a 1/4 mile lap)-
probably from your PC to the corner on your block!! ...I was in so much
pain. I hurt so bad but couldn't face that I really had some bone
problems. I stopped and took breaks too. Still dancing with denial at
that point.

Last year I did my hour walk...5 months post-op FVFG. I did it
with my forearm crutches. I was glad not to let the team down that
year...but everyone understands regardless...I felt good I could still
contribute. I took my time and went slow but I did it.

This year, I hope I will be able to do it. No pain nor crutches. These
are people that I only see once a year and I cannot wait to WALK the
laps...for more than Cancer and those who were close to me. June
24th...big day for me. I will also leave the possibility that I won't
be able to...that way my expectations aren't so high...but I won't
focus on that.

Why do I tell you this? Because there are moments in all of our lives
that can be extremely frustrating but taking one day at a time makes it
a bit easier to process. I am also repetitively thankful for these days
I have been granted. I may not have pain but I still take one day at a
time.
Just wanted to share,
Star

Completely off the subject is that I have such a body FULL of energy tonight, something I haven't felt in some time now. As if I can't sleep or want to do anything else but focus on this energy. Of course, we know if we have the energy and need to burn it...we do so by exrecising or whatnot but this is more than full of energy...this is a addiction feeling, a happy feeling a wordless feeling, HARD to describe. A feeling that I cannot put to rest and something I cannot solve easily.

What to do what to do...wonder how long this will last...its only been a couple of hours but it feels like a lifetime!

Anyways, thought I would check in and let everyone know I am doing JUST fine. Baseball is back, I am thankful for that...that's where my energy goes...but no home games for a week!
Only if...
Star

I am by all means no professional when it comes to fatigue but I
certainly am a person to try different modalities to see what
works. :)

Maybe trying other options than meds for sleeping well? Obviously,
talk to your doctor first before doing anything and see if it's a
good idea to try for yourself. We know, that what could be good for
one person may be bad for another.

Here is a question you may have posted but maybe not...has you doctor
checked your thyroid? Hyperthyroidism often shows signs of hyperness
but some people have the opposite effect and feel exhausted. Insomnia
or difficult in sleeping also is a symptom of hyperthyroidism.

Herbal treatments(talk to your doctor first)...he may be able to
recommend herbs that may help sleeping...

Diet-(talk to your doctor first)-recheck your diet and timing of
eating. I dont know your patterns but reevaluate what you are eating
and when. Maybe changing times of eating and/or content of what you
are eating can effect sleeping patterns.

Exercise- (talk to your doctor first) Is there any? Is there enough?
I know that some of us are not as mobile as others but there are
exercise your doctor could give to you for you to do that suits you
individually. Could be ROM exercises if that what the doctor says.

Environment-sounds like you changes physical environments of your
bed ...how about lighting? Is it dark enough? Do you eat in bed? Do
you watch TV in bed? Do you read before going to sleep? Is it silent?
Is there caliming music instead? Temperature? Is it cool? Warm?
heating pad? Ice?

Stress- Is this effecting you? Do you have stress coping skills that
work for you? When have you changes your coping skills? How do you
deal with stress?

Sleep Diary- Tracking the times you awake, your patterns, how long
you slept, along with daily activities you did during the day, even
times you ate and what you ate...by having a diary of your sleeping
patterns you may see a pattern you can correct yourself or if not,
your doctor could correct with you.

Relaxation/Meditation treatments before you go to bed...you could
think of your favorite place and concentrate on the smells of that
place, the sounds of that place, the air of that place, the scenery
of that place...etc.

Sure, I had pain
And even a limp.
No injury was present
Yet I felt like a gimp!

Much research was needed
A journey I went.
I was scared to death
I needed to vent.

AVN Support Group I found
On the internet.
Files, links, experiences
I was then all set!

Marie’s AVN Group it was
Not like any other.
It was a family to me
Acting like a sister and/or a brother.

I gathered as much info
I could possibly see.
This was a rare situation
And it was happening to me!

Off I went to get opinions
And get the doctor’s ‘say’.
Different opinions and solutions
Everything seems very gray.

The last doctor was at Duke
Fed Ex x-rays via mail.
I was then accepted for surgery
One that ‘could’ fail.

I was then on a waiting list
To get a (FVFG) Free Vascular Fibula Graft.
Less than 3000 people had done this
I sat… and I laughed.

It was then I had four months
To prevent a collapsing hip.
On crutches I lived
Eventually developed a grip.

January 8th, 2004 arrived
And I was all set.
Angel Flights to bring me there
My needs were all met.

Dr Urbaniak and Eunice
Skilled doctor and PA.
Good hands I was in
This was finally my day!

There were five days in the hospital
For me at Duke.
I was on so many meds
I wanted to puke!

Angel Flights again
Back to my Mom’s house.
There was a lot of activity
But I was quiet as a mouse.

Bed rest for me
And postings to the Group.
Support is what I had
Glad I was in the loop.

I needed help
Not only from brother.
There was my niece and two nephews
Most of all…my caring Mother.

I would post my experiences
So others like me would learn.
Many people helped me there
It was now my turn.

Five long months passed
Time for me to return home.
Still I had the Group with me
I wasn’t alone.

On crutches I was
Getting around was hard.
Everything was a challenge
Then I received an e-card.

It was from a member
Of the Group founded by Marie.
Encouraging posting to the Group
This was just meant to be.

Challenges for me continued
On the road I was at.
The Group was a constant
And eventually the Chat.

My six month mark
From Post Op came.
If it wasn’t for the Group
I would be insane!

I continued to heal
Fewer postings from me.
I catch up once a week
This Group was the key.

There is support and information
And lots of love.
Positive thoughts being wished
And prayers answered from above.

It’s January 2005
Now I am a year Post Op.
Feeling great I am
Feeling over the top!

Here I sit in my hotel
The one near Duke.
From Colorado (home) I traveled from
And this time I won’t puke!

Today is my one year follow up
With Doctor U.
My anxiety is heightened
My heartbeat is too.

I am hoping for a report
A report with no holes.
Wishing the graft has taken
These are my goals.

Alone I am not
I have the whole Group with me.
Thankful of all of you
You are family, you see.

Today will pass by
A great report I will get.
Life will continue onward
But this day I will never forget.

This Group has helped me
Through both thick and thin.
Wanting to return the favor
That surely is not a sin.

A superb report I received
Just like I had planned.
All those who supported me
I give you all a big hand.

A hand full of empathy
Sympathy and love.
I wish to return these favors
With some help from above.

Forever I am thankful
Comfort I wish to give.
To any that need support
We DO continue to LIVE!

Just remember when you come for help
One thing I would ask.
Is to return the favor to someone
This is such a small task.

We are all in this together
Different ages and location.
Helping people to get through this disease
This is my motivation.

I dedicate my life
To supporting one and each of you.
This Group is dear to my heart
Just like our ribbon that is green and blue.

Green for growth
Our bones and relations.
Blue for healing
Both are integrations.

One more thing I can say
Is that we are in this together.
People come and go
But this will be in my heart forever.

Star
Soar17star@yahoo.com
Concilio 1.24.05

Really, like I said...it is MY pleasure to write to you. I don't EVER want to force information on people, but if they seek it out...I like to assist and like I said, return the favor a hundred times over. :) I thank you for sharing and seeking information! Knowledge is power and I am grateful that you are doing so! Thats GREAT!

About travel...I took angel flights, I live in Colorado (so I will wave to you when you fly by). I actually went to south FL before my surgery to get ready there since my mom, brother and nephews and niece would help me there. But I did take two Angel Flights plances there and back. That is an option. Also, another guy I helped here in Colorado took a regular flight but they let the airline know it was medical and they got a break also...you may want to check into that unless its too late. I will tell you this...on the way back on the plane...YOU NEED TO PUT YOUR LEG UP TO ELEVATE IT. This is a must. If not, you will SEE your ankle and foot turn purple and feel your heart throb in your foot. This is NOT good. In fact I spent alot of the 6 weeks and there after elevating it. Funny, Now that I think of it...I do that now sometimes...guess its habit. :) Put your leg up on your gf and/or mom...you will thank me later for that!

Also I had the hospital give mne an ice pack before I left and used it on the flight. You will be pretty swollen after the surgery and for weeks to come...ice bags will and should be your best friend.

Keep in mind for future reference that Dr U uses a different scale than the norm...meaning in the future...people will say...oh, you were a stage 3? 4? That means collapse and can even show proof of this, but know yourself that Dr U uses a different scale and a 3 or 4 may not be a collapse. ;) Save you some concern and confusion in the future.

I too was on crutches to prevent collapse for 4 months while I waited on the waiting list. LUCKILY, my stage did not advance. I was lucky and hopefully yours is like that too.

Thats good insurance is paying for everything. Mine did (knock on wood)...I can see some of the items havent been paid yet from my insurance. I did have to pay $500 when I went there. I did not know this and it was because I was out of network. Check into that if you wish. I also got a letter from anethesia saying I owed $6000...I was in bed then and I can remember FREAKIN out about this...dont freak on this...it works its way out and insurance took care of it. You can be a bit sensitive in bed...from meds and what you been through.

Just as a warning...I remember thinking before hand that my hip and leg would hurt after surgery...your WHOLE body is tramatized. I mean this. You feel like you been hit by a truck. I am NOT telling this to scare you since it does pass...but try not to over estimate that you will just bounce back. That will take weeks for your body to get energy back. You will be surprised how much it drains you. Sleep while you can now...they wake you every two hours in the hospital for something....cathetar bag, take blood, drain the blood from the drainage bags, tempurature, food, drink, pulse, med bag change...stop the beeping!!!!! You will laugh at this later...and know exactly what I am talking about. :)

They get you out of the bed the NEXT DAY. This I still cannot believe. I was doing so well, the PT and I got to stand up and walk around the bed to the other side of the bed...to the bathroom and around the bed again to lay down...That probably took 30 minutes. :) Normally they just stand you up which trust me...is a challenge in itself.

Thats what I did-mini-vacation and that is SUCH a good frame of mind to be in going into this. The pool was my savior...you cant do anything but the one thing you can do after 6 wks (once the wounds are closed and doc says ok) is swim. You can WALK in the pool. Its such a nice freedom. Being in FL, I was in heaven (I grew up there). I would stay there for 3-4 hours a days (now this is EXTREME-you dont need to do this). I look back and I laugh at all the times there. I was at my moms and she lives in a retirement community so I knew all the ladys at the pool and men...etc. I go there every March and I cannot WAIT to go this March and show them all I can walk! Silly to say but I would wheel my wheelchair there and get in and etc...I am excited for that moment. Sorry, got side tracked... :)

Pain-you will have massive pain pills. Everyone is different. You may have pain and may not. I did not. I also seems to fallen into the exception to every rule through all this.Just take it easy . Get ice bags now and switch them out for your ankle mostly and your hip...ankle mostly. The swelling will go down, takes time.

What I did in bed. I lived there. :) Buy a "grabber" any pharmacy has them...walgreens eckards, Payless, I dont know what you have there (store). Once you drop the remote on the ground...you may not be able to get it. Get a grabber. This will sound ridiculous but get a apron with pockets. I know this sounds silly...BUT, after your six weeks to 6 months...you will be on crutches...as now, you know you can carry nothing! So those times where you would like to carry the empty glass to the kitchen or get your own ice bag, etc...this will be handy. This also will prevent some frustration and give you SOME freedom of caring for yourself. :)

What I did...TV, movies, books, letters, arts and crafts, my mom would bring things to me to do so I didnt feel so fricken helpless...like all the ingredients to make a salad or ingredients to make soup and cut it up and put in bowl...or wrap things for her...I had a laptop so I was online ALOT and on the group too...I would say all this happened after 4 weeks. The first several I slept and napped and a shower...thats a production...a 2 hour process from beginning to end (resting inbetween). You will feel so good after your first shower...you wont have one for a week! ;) BECAREFUL! This is a scarey area! Get soap on a rope now cuz when you drop the soap...it will take you about two times for that to happen, since you will call for someone to come in the shower and hand you the soap. ;)

The tape things...you will know later...tuck this in the back of your head...they will come off the more you take showers...dont take them off yourself! It will make the scar wider then (skin wont be snug together). Dont worry about this now...theres so much more Ill write to you for later.

The time will go sooooo slow for you. I promise, you will look back and go wow! That was a year ago! :) Take care of yourself after the surgery because it lays the groundwork for your future.

I love hearing "healing-type ambient music". This really says alot about you in which we have in common. Seems to me, you dont know what will work but you will try every modality incase it does or contributes to working. Tell me I am wrong...it says it throughout your email to me. :) - music I did this also...actually, I put head phones on the night before while going to sleep so subliminally, it was going in my head . :) So the next morning, I was good to go and healing already! ;)

Dont bother to take much to the hospital...you wont do much...and someone could stay there with you in the chair. It is not too comfy but my mom did...only one person though to sleep over. THEY will freeze and you will sweat (from meds). ;) At least thats how I had it. May not be like that but I like to have people prepare for anything.

You may go back to work after 6 weeks...depends, everyone is different...one thing I will say is KEEP YOUR LEG ELEVATED...I dont care where you are...work, home, wherever.And ice...bring ice to work...I did. I know people that went to work at 6 wks...it exhausts them alot...I would recommend working a few hours at home first if you can and doing little by little. Since things take 10 times longer in your condition after...its not like just getting up to go to work. :)

The appt before your surgery...yea, thats a mess, pack a lunch or something cuz you will be there most of the day. Its like cattle that day. ;) There is a COOL cafeteria downstairs at Duke, real cool, eat there but bring cash...they dont take credit and the atm machines charge you. :) Have mom or gf get food for you and bring it up to the cattle room. ;)

Keep in touch, dont be shy about any question. As you can see I am pretty open with information. Tell family to be patient with you. It is hard on them too. It's like having an infant again except that the infant can TALK! ;)Take it moment by moment since day by day will be toooooo long.

KNOW I will have you in my heart, sincerely Daysun, I will send you good thoughts and healing thoughts for you.Feb 17th is your day...if you are reading this, send him good thoughts also!

NEW YORK (Reuters Health) - People with low bone mineral density (BMD) are at increased risk of developing Alzheimer's disease (news - web sites), researchers report. Low BMD is also associated with all-cause dementia in women, but not men.

"Some, but not all studies have suggested that estrogen replacement therapy has a beneficial effect on cognition in postmenopausal women," Dr. Zaldy Sy Tan, of Beth Israel Deaconess Medical Center, Boston, and colleagues write in the Archives of Neurology. "BMD is a potential surrogate marker for cumulative estrogen exposure."

In a community-based study, the researchers examined whether low BMD in almost 1000 mentally intact elderly patients increased their risk of Alzheimer's. The subjects had bone density measured at several places in their body between 1988 and 1989.

During 8 years of follow-up, 95 participants developed dementia. Of these, 75 were classified as having Alzheimer's disease.

Overall, 35 of the 243 patients in the lowest category of hipbone density developed dementia, classified as Alzheimer's in 27.

After adjusting for age, smoking, estrogen use, sex, stroke, education and other factors, women with the lowest BMD had twice the risk of developing Alzheimer's disease and dementia, the researchers found.

These findings, Tan's group concludes, suggest that women with low BMD "may benefit from estrogen replacement therapy" -- despite the well-known increased risk of other complications.

I also would like to thank those that have been inquiring about my
results...to tell you the truth...this trip set me back a bit on
emails and such so I apologize for not posting sooner.

My trip was extremely excellent! Dr U and Eunice were plenty pleased
with my progress. They took xrays of my hip only (never again will
and should I have an MRI on my hips...with the pin in there still-
per one of my questions). They were excited and yes, excited is the
word...to see how well my range of motion is. No limp, no pain, no
pain meds...just doing very well.

My appointment was Monday Jan 24th and my bday was Friday Jan 21st.
After I had taken my xrays and when they came into the room, they
said...looks like you will be getting a good birthday present, you
are doing great! (How did they know that is what I wanted for my
birthday?) :)

They told me (and answered some of my concerns) about what I should
not do ever again- anything with impact. I already covered this with
them before the surgery so it was not a surprise for me. No running,
no basketball, no volleyball, no parachuting, no aerobics, etc. I was
to keep up the walking, swimming and bike riding...those were fine.
Oh yes, I had to "retire the rollerblades"...a small price to pay for
no pain and being able to walk. That may have been the one thing I
actually did do that I cannot any longer... but I am TOTALLY ok with
the trade. I asked if I was done healing now and they said I probably
have a few more months to heal inside.

They said there is no sign of collapse at all and the circulation
seems to cover the whole area...therefore there is extreme rounding
of the femoral head. (There was not collapse before but it was
showing signs of collapsing at any time).

They asked what am I not doing now that I would like to do...I told
them that I am doing everything I like to do so the answer
was...nothing.

They were aware of my support on this group and were extremely happy
about that. We chatted about a variety of things...one of course was
how this group helps out in so many ways. I actually made Eunice and
Dr Urbaniak two AVN ribbons (I will post the pics of the ribbons
shortly). I wrote down and told them what the colors meant and they
were, again, extremely happy about that.

All in all, I am happy with my choice and like the idea that it has
been working for me. Obviously it does not work with everyone, since
we are all so different, but I will stand behind my choice for my
situation.I still tuck in the back of my mind that this may not be
permanent and that I may need a THR (my next step if this fails) in
the future. I will keep focusing on the day by day scenerio...seems
to be working for me.

I had alot of time to reflect while I was there and actually
constructed a LONG poem during each of the moments I was going
through while I was in North Carolina...some had asked for stories
about themself and the group and how its effected us and etc...that
is what my poem is about. Like I said...it is LONG...I had alot of
time to reflect. ( I will post it and soon as I get a bit
more settled back home-and type it in).

Again, thank you for the kind words and wishes and I am thankful for being a part of the AVN group and everyone for making it what it
is. It is heaven for some.

I did get what I wanted for my birthday... A great report from Dr
Urbaniak and I am thankful for that.
Hugs and tears,
Star

I have ALOT of good wishes and prayers for me out there...from work and from my support group on the net. I appreciate them each sincerely and will take all that positive energy with me to the iced states I am facing! Talk about having all odds! But that just wouldn't be me, as you know! The exception to every rule...let's make this one a good one...exception or not. I will be holding out to make my post when I return...until then...thank you to everyone reading this post.
Star

I wanted to copy and paste some of the most awesome wishes in here to see how much this group is really a help and if you have anything to do with AVN, you need to post and join!

From BM:My dear sweet Star,
Happy Birthday! I hope this year you get all the wishes and pain free days that you ask for. I will be thinking about you as you go on your trip to get your GREAT news! I have total faith that it will be the wonderful news you've been hoping for. Happy Birthday Mrs. Wonder Woman...All my love!
Mare

And most of all from the founder and director, Marie: I am praying like crazy for you that your graft took and all is healing 100% well. Good luck...I'm with you in spirit,
Hugs,
Marie

Now I have cut and pasted, excluding business of ours and know I NEVER post anything on here from someone from the group...that wouldn't be fare...so you will have to go in the group and see for yourself! ;)

These two posts this morning made me cry even more because I KNOW these are sincere people, whom I have never even met! They are so dear to my heart and accept thier good wishes toward me. {{{{hugs}}}} today for all!

Today will be a good day, just like all the other days that I can walk...except, these days I can feel your energy and I sincerely Thank you,
Star

I can remember the doctors saying to me a year ago and there on..."You will heal up to a year"...today is that day...I am all healed now! ;) I feel wonderful and no pain AT ALL! I KNOW this was the right operation for me. I knock on wood, since I know nothing is 100% and anything could happen in the future...but one year out and I am doing AWESOME!

If I were to give a small bit of advice, looking back a year: listen to the instructions, do the exercises and KNOW you are healing for a year...especially when you are feeling just fine...you are healing inside still...don't do things that are debatable! Get someone to chat with you who has gone through the same thing and do research and your homework on the whole scenario!

Hugs to all today! I feel like a million bucks!
Star

:) Star