Main » February 2005

February 13, 2005

Need Help Sleeping?

I posted this to a person that is dear to me and it was suggested that I post it here so here it is:

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.

Posted by Star at 08:41 AM | Comments (0)

February 06, 2005

Star’s Milestones with AVN-Poem

Star’s Milestones with AVN

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

Posted by Star at 12:37 PM | Comments (1)

February 05, 2005

Pre Op FVFG Tidbits

This was a revamped letter I wrote to a person that is having the FVFG also at Duke. I thought it would be good information to post for those pre op FVFG.
Star

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!

Posted by Star at 01:34 AM | Comments (0)