A Message From April's Family

Just wanted you all to know that our Mom is no longer struggling...she can finally Just Breathe!!!

April May (LeJeune) Boggs of Ann Arbor passed away in her sleep on Nov. 7 after a courageous battle with Idiopathic Pulmonary Fibrosis. She is survived by her husband of 44 years, Ray Boggs, Jr, and their 3 children, Lori Boggs, Leah (Scott) Powers, and Jason (Martha) Boggs, and her 4 grandchildren. There will be a memorial service on Friday, November 11, at 2pm at St. Andrews United Church of Christ, in Dexter. In lieu of flowers, please send memorial contributions to the family or to the Pulmonary Fibrosis Foundation.

necssary losses/things we take for granted

Things we take for granted are things we do by rote. We wake up in the morning and most of us have to go to the bathroom. We do this by rote, we simply do what needs to be done and move on to the next task at hand. For me this is easier said that done. To get this done now, I must take some medicine to I can breathe and walk that 10 ft or so. Then I wait about 10 minutes before I can go to the kitchen, get my coffee and something to eat to take the balance of my medicine. Then I now go lay on my hospital bed and catch my breathe again. I am using 8 liters per minute of oxygen and the drugs and most mornings I gasp for air for 5 mins or more before I get it under control. It has taken me a while to figure this out. Last Thursday I hurt my back again. Yesterday I had an xray and sure enough the t5 vertabrae if fractured. Today I had a couple of teeth xrayed and wouldn't you know I need to have a couple pulled.

From where I sit Lung Cancer wasn't so bad.

Good Morning Family, Friends & Guest,

Everything is relevant an relatively speaking Lung Cancer was easy compared   to Pulmonary Fibrosis.  With Lung Cancer we had a treatment plan and we set about treating.  In 5 months and 9 days, poof gone.!

With IPF there is nothing to treat.  There is no known cause, so there is no known cure and no one evens knows if the heavy hitting drugs currently being used to treat to anything at all, but cause a whole host of ugly side effects.

I believe I have had another big decline in the past couple of weeks.  I am up to 8 Liter per minutes of oxygen around the clock and I was still feeling air starved.  I hate the swishing in my ears I now hear with the oxygen at this level.  It is now getting hard to eat and breathe at the same time, so I am becoming a much neater & slower eater.  That’s a bonus.

I am now back on Morphine to help with the breathlessness.  It truly does help with the breathlessness, but gives me fits in other areas.  Some loss of Bladder control, Itching all over, nano headache when I first take it.  Not to mention the awful taste.  Good news – Junior Mints take the awful taste away pronto.

Still waking up and getting up anywhere from 4:00am to 6:00am.  Wish I could sleep till at least 7:00 am, that way the days would not be so long.

I know it wasn’t to long ago when I ask others with IPF about “The Cough” As I didn’t have one.  Well, I spoke to soon as now I have a cough and I cough a lot.  Every time I get out of breath, (which happens if I walk across the room) I now have a coughing fit, which then keeps me out of breath, is a vicious circle.

Well, that should bring everyone up to date so lets talk about some fun I have had.  Ray and I went to Sleeping Bear Dunes last weekend.  I had never been.  The Northwestern Lower Peninsula of Michigan is beautiful.  Some of you have probably seen the pictures I posted on facebook.  We stayed for 2 nights, Alias we knew the weather was supposed to be chilly, however, wind never factored into our thoughts and we never dreamed they would close the senic national lake shore drive.  So really we missed a lot of the beauty.  This weekend has been beautiful and Ray took me for a ride to Gallup Park and the river.  Then to Bill Drive in for a hotdog.  It was a nice day with my favorite caregiver, who is really very kind to me and most helpful.  I love you Ray Boggs.

Jillian Elanor's Page

Oh My What Big Eyes you have!
Just Beautiful

Jillian has wild curly hair on top that is quite long, but it is short and wavy in the back.  The tips of the longer hair is still a reddish color, but it is growing in blond.  There is a something, something about Jill that grabs your heart and won't let go.  Maybe it is because she won;t give me the time of day or maybe it is that she is always happy and smiling.  She smiles all the time and she seems to be making friends with Papa.
Jillian did not walk as early as Sophie, but at 10 months she is cruising.  She walks from the family room thru the kitchen, thur the dining room, thru the living room and up the stairs she goes.   She has not yet learned to come down the stairs, so this keeps her parents really busy,  Going up and down.

She likes to hold things in her mouth.  She will hold them up to half and hour while playing with something else.   The fish in her month has a magnet.  Her passie is connected to a strap with a clamp (like the ones used to hold with mittens)  Papa stuck the fish to the clamp, then Jillian tried to do it herself.   She loves to stack things up then knock them down.

One correction from Sophie's blog is that Jillian does not watch TV.  She might glimpse up once in a while when Sophie is watching, but she does not watch.  The photo's I had seen were taken when she was very young, So that has changed.  Something about being a year old before TV watching can commence.

Jillian likes to wake before Sophie than go to Sophie room with her daddy and wake Sophie by climbing up on top of her.  She finds this great fun.  She also likes to go to the grocery store and ride in the cart and see all the stuff in the aisles.  Sunday when she was here, she teased Sally with her ball. She know exactly what she was doing and laughed about it.  I think she is a sponge and has a thirst for learning.  Another beautiful child with a brain.   She does have a temper however, she sat on her passie and when she couldn't pull it out, instant hollering. Good thing is, it is quick to come and quick to go. and soon as she got the passie hollering stopped  She knows a couple of words, Uh Oh and Bye Bye.  She waves by curling her finger facing her body.

Beautiful she is, she looks like a China (Dresden Doll) with the most beautiful blue eyes I have ever seen.  Gramma status not withstanding.   I'm still making friends with her, but she brings me more joy than I can express.  I love her with my whole heart and hope to live to continue to watch her grow and develop.  I love you Jillian Elanor, you make my heart sing.

This is the lullaby her momma sings to her each night.  So beautiful.
http://youtu.be/CFOac8zybPE

Just three of the people I love most in the world!

I hope you have enjoyed these small little glimpse of my Grandchildren.  Sort of one day and how I see them on that day.  I love them all equally but different.  Love, Bon

Sophie Lyra's Page

Sophie Lyra is quite a girl. She is 3 years old going on 4 going on 15. She is way, way too smart for her own good and just keeps getting smarter, plus she is a pretty, pretty girl. She has blond hair with just the right amount of natural curl.

Sophie is sweet and kind and loves her sister Jillian to the extreme.  She loves her so much she can hardly keep herself from hugging and touching her.  They often sit next to each other to watch TV and Soph always has her arm around Jill.  Some of her favorite shows are Curious George, Clifford the Big Red Dog, Berenstain Bears, Maggie & The Ferocious Beast and Little Bill.  She gets the story or joke too as I hear her laugh or respond to the show.  This sounds like a lot of shows, but trust me her TV time is limited.

Sophie loves music and loves to sing.  She will sing along with her favorite music playing or simply sing on her own without a background.  She of course performs all of the hand motions etc to whatever song she might be singing.  Some of her favs are Shake my Sillies Out, He's Got the Whole World in His Hands, Wheels on the Bus, Lovely, Love my Family and Jump Up.  She knows all the words and a whole host of other songs.

One day a couple of weeks ago she was here and had us all outside and in the classroom.  She was the teacher of course.  Here she is conducting for us.  She sang songs this day too. 

She is a very lucky girl too as she has taken a couple of bug classes and has real butterflies in her room.  Bug classes aside, she is a girlie girl and always wears dresses, always, and she also always has one baby or another with her.  She has many doll babies, but I am not sure if she has a favorite.

Her dad has taken her to a couple of Michigan football games in her young life, last week they took the bus to the Big Stadium.  She liked the bus ride, a little bit of the game and the band.  They left at half time.  Such a lucky little girl.  

Lessons:  Soph is currently signed up for ballet lessons on Saturday's some where on campus and Swimming Lessons on Thursday at the YMCA.  Neither lessons are going well at this point, but it is still early.  On Thursday before her 2nd swimming lesson her dad ask her if she was going to swim this time to which she replied " I'm just going to sit on the edge and cry." and that is exactly what she did.  While there Jason decided to swim laps and when they were changing he lamented that he was tired from swimming the laps and Sophie said "Yeah I am tired too from crying by the side of the pool."

All in All she is a delightful little girls that can hold a conversation like an adult and tell you many, many things as she has a long memory and has had a ton of life experience.  Her parents take her lots of places we as parents would not have even thought to take such a young child.  She can tell you all about them.  I love her so, sometimes I think my heart will burst.

Condition Update, Advance Directive or Living Will

Good Morning Family Friends & Guest,

Things I have noticed lately: No pain meds during the night and wake pain free। I can stay up and fix breakfast, make coffee etc for 1 to 1 1/2 hours in the am। I take Percocet 10 mg every 3 hours all day and I am basically pain free। I can sit up in a chair for a long time without pain। This gives me lots of hope for the healing of my back। It won't be like new, but way better than the 30 seconds I had before surgery। I am thinking about stretching out the dose of meds to 4 hours and see how I do.

I can't keep my feet warm and if I step on the cold floor they actually sting. Don't have and Idea what the heck I will do this winter to keep them warm. The cold really sets the nuropathy off in my left foot.

I definitely have an increase in my Shortness of Breath। What does this mean? Is my IPF on the March again? This scares me, I don't want to die, I am not ready to die, I am not done here. It is because I have been more sedentary of late due to the back? I can fix that, I will just get up more often and move about. Walk the apartment etc. Only problem is this causes me to be short of breath to the point of coughing (I sound like a barking seal) until I see stars and my heart is racing like a runaway train. That scares me too!

Frustrations: Always sitting on lifeline and pulling. Sliding around in the hospital bed and the sheets won't stay put no matter what I do. I have to remake it 10 times a day and that really takes my air, no matter how much I rest. New - slight headache all the time and blurry vision. It is the drugs or something new. Who knows.

Advance Directive or Living Will

EVERYONE should have one. This is not just for those of us with warning shots, everyone should have one cause one never knows what might happen. It is the best and kindess thing you can do for a loved one.

Four Questions to ask yourself.

1 Do I want to be resuscitate if my heart stops?

2 Do I want aggressive treatments such as intubation and mechanical ventilation?

3 Do I want Antibiotics?

4 Do I want to be tube or intravenous feeding if I can't eat on my own?

My advance directive at this time is only a DNR (do not resuscitate) as my doctor has advised if I was down 30 seconds with my IPF I would definitely come back in an altered state. If I can't be the way I was before I went down than I don't want to come back. Ray knows this, Leah Meunier (none immediate family medical advocate) and all those I love know this. This may change over time as my disease progresses. This might be the biggest favor you do for your loved ones. It is a difficult topic, but one that is most necessary. For further reading see the New Yorker, August 2, 2010 edition or simply google it.

On Friday I was able to walk (with walker) into Office Depot to get ink for my printer. Then we went to Trader Joes and I was able to walk the store, again with my walker, then off to Country Market. I walked in, but used the amigo in the store. Ray took the groceries and I walk back to the car. This was most encouraging. Not 100% but certainly better than 30 seconds. Keep praying for more healing.

I bake a banana cake Thursday. I strapped on my apron from Vickie, piled everything from the pantry on my walker and baked a cake. Then took everything back, again with the walker. Worked out just fine.

I know this is just the first week of school, but Leah checked grades and Owen and Katherine had all 100%s except 1 for Katherine was 111% I am not sure of the subject but I think it was Social Studies. That's a great way to start off the school year and I am most proud.

This is IPF awareness week the 16th thru the 23rd so don't be a asshat, do something spread the word.

Be Well till we meet again. God Bless

Katherine's Page

Katherine is tall and graceful. She has beautiful true brown eyes and lovely thick dark hair and a great smile. She is 10 years old, soon to be 11 and a 6th grader at Forsythe Middle School. She is our 1st born Granddaughter and Owen's sister.

Katherine was know as Kate from the day she was born until the 1st day of Kindergarten when she advised her teacher "you can call me Katherine". She has been Katherine ever since to some family members and remains Kate or Katie to others. Her early childhood friends call her Kate, but her school friends call her Katherine. She is happy either way. I call her Katherine, her Papa solves the problem and just calls her Rag Mop. Her mom, dad & brother mostly call her Kate. Except her mom more often calls her Birdie. Nicknames are a southern thing and huge in the Boggs family.

Katherine set out very young to out read her brother and now reads and comprehends at college level. She just finished reading "Heaven is Four Real". It is wonderful to see her read for pleasure. She loves Greek Mythology and will say her thanks and prayers to the Greek God’s –for example if it’s a beautiful day with the sun shining, she’ll thank Apollo since he’s the God of the sun…
Here is a list of some of her books

1. Percy Jackson (Greek Mythology) series 3 times. She even wrote him a letter.
2. Spiderwick Chronicles 2 times
3. Alcemist
4. Blubber
5. Where the Red Fern Grows (multiple times)
6. Are you there God it's me Margaret
7. The entire Bone Series (the book was 3 inches thick)

This is just a few of the many, many books she has read. I think she is currently reading "The Help".

Katherine likes crafts and sewing. She has made several outfits for her pal Patrick a build a bear dog that has gone every where with her and taken part in every celebration for many years.

Kate is clever, and smart, and witty with a wonderful sense of humor. Example a few years back we were discussing the band the Beatles and then starting teasing about Beetles and somehow ask Katherine how to tell the difference and she said because one is spelled Beetles and one is spelled Beatles. I think she was about 7ish.

This is her most recent picture taken especially for this blog.
I'm sure I have left off many, many things. But this is a snapshot of how I know Katherine on this day.

We are most proud of her and the direction she is heading as she transitions from Little Girl to Tween. We love you Katherine Theresa Powers with our whole hearts.

First day of school September 2011.

Grandson Owen's Page

Hello Family, Friends and Guest,

I have decided to dedicate a page to each of my grandchildren as I know them at this point in their life.  I will start with Owen the oldest and work down.  Each will be a separate blog.  Papa watched Owen when he was a baby, from about 8 weeks to 16 months.
Owen is 13 years old and in the 8th grade at Forsythe Middle School.  He has a most beautiful smile and a great head of hair.  Owen is very kind and kind hearted to others.  He is especially gentle to his two little cousin's 3 years old and 9 months old.  He has new friendships and long standing friendships.
He loves working on the computer playing Video games. Yep Owen sure does LOVE video games.  He has been using the computer since he was about 18 months old.  I have a picture of him somewhere on his knees with a pacifier in his mouth at about that age on the computer.  He has even taught himself to play the keyboard and piano from the Internet.  He plays video Music and shows other how on You Tube.  He also plays Trombone in the school band for 4 years now.  He is very good and I love to watch and hear him play.  You can listen if you like here http://www.youtube.com/user/TheBlacKoopa
Owen tries to explain a game to me, but for me it is like the adults in Charlie Brown, WA,WA,WA,WA,WA.  Still I try to follow along.

Speaking of school, it comes pretty easy to Owen so he really doesn't have to work REAL hard to get good grades.  He likes school and as we all know that is have the battle.  One subject he likes a lot is physical science you know with Bunson Burners etc.  Of course another is Band.

Owen likes a lot of different foods and the good thing is, he is willing to at least try new things.  His favorite TV show at this time is Lost and he knows it in and out. He can be witty and he is just starting to take an interest in clothes.

Owen has many nicknames (damn southern in fluents) ODog, Owie, OlieConolie, Onun, Otis & Oak Tree.

Owen is still willing to talk to his parents about anything.  We are very proud of him and the direction he is heading.  Keep Up the Good Work.  We Love you, Bon (Papa too)

XRay, med adjustment , words to song.

Hello Family, Friends & Guest,

My back was so bad yesterday I called the doctor.  They had me come in for an Xray.  Everything looks fine and no more fractures so they adjusted my pain meds and I have been great all day.  I know the pain meds is just masking, but I'll take it.  Thank you Jesus.

The link is to my Playlist.com account where you will find my newest list of song, My favorite Hymns.  This is the only way I know how to do it until I can figure out how to get the player back on the blog and working.  I have tonight email the developers for help.  I want to provide you with the Lyrics to the Hymn "God Be With You Tell We Me Again" because they are so beautiful.

God be with you till we meet again;
by his counsels guide, uphold you,
With his sheep securely fold you;
God be with you till we meet again.

Refrain
Till we meet, Till we meet,
Till we meet at Jesus' feet;
Till we meet, Till we meet,
God be with you till we meet again.

God be with you till we meet again;
neath his wings securely hide you,
daily manna still provide you;
God be with you till we meet again.
(refrain)

God be with you till we meet again;
when life's perils thick confound you,
put his arms unfailing round you;
God be with you till we meet again.
(refrain)


I am in hopes of getting the playlist up and running soon, but in the mean time, maybe you can go to the playlist to here the melody and then back here for the words. http://pl.st/p/22410267403   We will see.

Have a lovely evening.  God be with you till we meet again.
Be Well.

PS this was the Hymn that we sang in Sunday School every Sunday at the end of class. 

Dreary Days, Pity Potty, Hospital Bed

Hello Family, Friends & Guest,

As you all know by now, I had back surgery on the 22nd of August.  On the 25 I felt the best I had felt in a long, long time and it has been downhill ever since.  On Friday before Labor Day, I was sure I was done with the Hospital bed so I had Med Equip come and pick it up.  As it turned out I was a little Hasty in that decision and had them bring it back the Tuesday after Labor Day.

If I do nothing but lay in this hospital bed, I am convinced I am not sick.  Nothing hurts, but the minute I get up I know I am sick and always will be.  I am trying to be Grateful, but some days it is terribly difficult.  Some days it can be terribly difficult for many days.  I hate that feeling.

It has been cold and raining here for 3 days.  It is barely lighter than dusk all day long and the rain in cold.  High in the low 60's.  I have never done this before but I am seriously thinking of turning the furnace on and it's only the 8th of Sept.  I never turn it on till late October, but maybe.

OK the above was written early afternoon, It is now 8:00 pm and I am feeling very different.  I have had time to think about my visit with Rev Beth.  A couple of my Face book Friends have commented on comments I put there and Cousin Leah has been to visit. With all that I am out of my funk and I think I am in the process of turning the corner to acceptance.  I don't want to accept and I am going to call the doctor tomorrow and ask a few questions. That is 8 days out from surgery and too long to wait for the return visit on the 21st.   Just in case, they want to check now to see if I did something or if there is something I should be doing.  Maybe I should be trying to walk more, I don't know, but at least I can ask a few questions.

I worked a lot to get a music player to work.  The one I had I deleted cause I couldn't change the play list and the one playlist.com has now will not load in right for me.  I found this U Tube one and I got Art Garfield on it, but alas I cannot get it to load the song Grateful.  I can find it on the Internet and the lyrics too, but it will not load on this player.  I will just have to keep  working on it, but no more today.

I did bake a loaf of Blueberry Bread this morning.  Ray got out all the ingredients last night for me so it was just a matter of measuring out the ingredients and mixing it together.  It was made with Bisquick and Oatmeal.  It took Ray and I together to beat this quick bread 30 seconds, but we got her done.  It is tasty, but not sweet.  I think in a pinch, I would bake it again, but only in a pinch,

This is it for this time, I am emotionally worn out, besides that I am tired so.....

God be with you tell we meet again, Be Well

P.s. we turned the furnace on when Ray got home from work.  I had to get the dampness out of here.  Much better now.  :^)

Random Thoughts & General Crabbiness

Hello Family, Friends & Guest,


Oh what a difference a day makes.  Saturday it was 95 here with a heat index of over 100degrees.  Today the high temp was 61 with an overnight low in the 50ies.  House is cold, had to use the portable heater in the bathroom before I could shower.  Suppose to be cool all week but Friday the high should be back in the 80ies.  Weather is year makes no sense at all.


Just when I think I should call this surgery a failure, I look at my arms that are still bruised all to heck from the blood draws and IV's.  Took 3 times before the IV worked.  I guess if the outside bruises are not healed I should not expect the inside to be.  It's just that day 2 after surgery I felt wonderful and now it is a little better, but certainly not what I was hoping for.  I will try to be patience for a little longer, but I got to say even with all their warnings I am somewhat disappointed.  Oh yeah, I sent the hospital bed back to soon too. Hope to get that back tomorrow.


My neuropathy left over from Cancer treatments is brothering me lots.  Middle (Long Landy), Ring (Betty Hopkins)and Little (Little Jackie Dantoe) fingers of my left hand are numb and tingle.  Bothering lots today as I hemmed a pair of PJ's.   My left foot in the same area is numb and tingles especially when the floors are cold, such as today. 


I seem to be getting winded faster.  I was just short distances and gasp for air.  Not sure what is up with that.  Also been coughing a little this passed week.  This coughing seems to come and go so I am not going to start worring about it now.   I said I was not going to ask Why me, but dang, Why me for everything.  I truly am so disappointed about my back.  I really had put all my toys in one basket and truly believed the surgery would work beautifully. 


One last thing about Sally.  She will take her ball to the den and play by herself.  She looses the ball under the chair and cannot get it out.  She will bark quitely one time and run out to dad.  She will run back to the den and wait.  If he does not come to help right away, she will run back again to get him.  It is a joy to watch.  Ray knowns right away when he hears that bark what's up.


On a happy note, I met a Facebook friend in person Friday.  She brought Ray and I lunch and visisted for a couple of hours.  It was like we had known each other forever.  Turns out her daughter is married to a long time friend of ours among many other things in common.  We had a great time and we are looking forward to seeing Mary and her husband real soon.  Stay tuned.


We had the best time with the kids yesterday.  We had BBQ Chicken, Grilled/Baked Potatoes, Cole Slaw, Corn, Brownies & Ice Cream and good good company.  Later in the day Sophie decided to be the teacher/librarian/conductor.   She had us all following her command.  She told one of us to "sit down or leave the room"  That is just one comment of a few hundred, I just can't remember them.  She also had us singing many song and making motions.  It was a great day.

God be with you till we meet again.  Be Well.

3 days out.

Hello Family, Friends & Guest,

3 days out from surgery and my back has hurt all day.  I am in hopes that I slept on it wrong or something.  I have been very careful and I truly don't think I over did it yesterday, but alas it has hurt all day long.

Despite this minor set back I did have Med Equip pick up the hospital bed today.  I am just as comfortable on the couch again and I can save all that real estate.  I did confirm that if I was hasty in my decision I can get it back.

A couple more things about Sally I forgot to mention.  She gives true hugs.  If she really wants something she will dig in deep to for the hug.  They are truly wonderful.   Also with her ball obsession she will stop fetching when you tell her last time or All Done.  She will not eat if we are not home and even the snacks we give her when we leave, she eats when we return.

They say if it ain't broken don't fix it.  Well I tried to change my play list and in the process I deleted the old player.  The new player is different and does not work the same sooooo for at least now no more music.

Wishing everyone a safe and fun holiday weekend.

God be with you till we meet again.  Be Well

Post Op Update, Sally Dog

http://www.playlist.com/MeTigger2

Good Morning Family, Friends & Guest,

I am feeling quite good 2 days post op.  The incision spot itches a tad.  The three blown veins are healing and it is 8:30 am and I am dressed with my hair washed and styled etc.  Feeling pretty good about myself.

I want to talk today about our other miracle from God which is Sally Boggs our dog.  She came to us on a 3 day trial 2 years ago.  She loves us both with unconditional love.  Like all our dogs have been she is quirky.  We share a pop tart each morning for breakfast.   She will patiently wait for the pop tart to toast and cool.  You can set the plate near her and walk away while it cools and she will not touch it.

Her favorite toy is a ball.  One specific ball and she will fetch it and bring it back as long as you will throw it.  She will also stop when you tell her all done.  She will also play with it by herself.  She uses a pink slipper to send the ball, than looks around for it, fetches it and starts again.  She sends it by holding the slipper in her mouth and shaking the heck out of it.  She gives great Hugs upon request or if she is wanting something.

She will not eat if we are not home and now we both must be home.  Use to be she would eat so long as one of  us was home.  She will not go to bed without at least one of us.  At bedtime she watches for me (I swear she can tell time) as she must have a tiny bite of Vaseline to eat before she crawls under the covers.  She also has to flip over for a belly rub from Ray before going under cover.  She sleeps under the covers for about 15 minutes then walks to the head of the bed and just flops between us with her nose nuzzled under my pillow.  She does this several times during the night and in the morning she is always under the covers.

She loves me do.

In the 2 years she has been here she has never had an accident, nor has she torn  anything up.
She is afraid of lawn mowers and storms.  She sits real close to me for the mowers, she hides in the closet from the storms.


Speaking of mowers they are out there now.  Poor thing, she is hiding under my bed.

The best part of Sally is that she loves us both equally.  I am so glad as my original plan and the reason I wanted to get a dog was so that when I am gone Ray will have something to greet him when he comes home.  A silent house is a sad house.  Sally will help to fill that silent.

Thanks for listening.  Have a great day till we meet again.
Be Well

Update, Update, back surgery done

Good Morning Family, Friends & Guest,

Back surgery is done.  Thank the Lord.  Yesterday was so very hard on me.  I felt the hand of God on my shoulder and I could see it in my mines I, but I still couldn't shake the fear.  Jose the preacher was here delivering my oxygen and prayed with me and he said.  "If you are going to Pray why worry and if you are going to Worry why Pray!"  Makes perfect sense, but so very hard to do.

I am early calling the surgery a success, I feel like I have been run over by a truck, not to mention the exhastion, but the pain is in a new place and localized to the left side, so I am calling it surgery pain,  I slept most of the night, but did get up at 5:00 for pain medicine and could not return to sleep even with the ativan.  At 6:30 I took my morning meds and Sally and I shared our usual Pop Tart breakfast.  Sadly I have to give her my favorite part (edges) to try to keep the sugar she gets down.  We only like the brown sugar cinnimon Pop Tarts.  Did you know a serving size is 1 pop tart, yet they package them in 2s -tricky.

I have the best husband/care giver in the whole world.  He is patient and kind.  He has chosen to stay home today with me and truly, I am glad to have him.   I had thought of asking him, but didn't.  I can't lift more than 2 lbs and walking is still a real chore.  I am going to ask him to bake the preacher cake as he seems a little bored.  I love him ever so much.

My plan for the day is to rest.  Research Skype and how it works and research a place to stay at Sleeping Bear Dunes at the end of the month.,

Same, Same only Different

Good Morning Family, Friends & Guest,

Everything is different, but the same. I am still waiting for the hospital to call for a time for surgery on Tuesday. If they do not call soon I will try to call them as time is running out me thinks. Especially when they say they want another physical and history before the fusion.

Funny, until I was in my forties I always took baths, then I discovered that showers were much quicker. Now I am back to baths as I can't stand long enough to shower. Ray helps me in and out of the tub. Good thing he is home 4 days a week. Hospice would send someone, but I am not ready for that yet.

The picture is of my new back brace which I am to wear when sitting or standing. So mostly I just stay in bed.

New play list to enjoy. Time to go, I will keep you posted. I am nervous as Ray does not feel well and his gout is in his hand. Nurse should be here soon.

God be with you and Be Well till we meet again.

More back info, tough time breathing

Good Evening Family, Friends & Guest,

This is what I know at this point.

I will have the T12 vertebrae fused on Tuesday next.  They might, just might determine while I am there to do 2 more, but it is really not likely.  I am not sure how much relief this will give me, but I am willing to try just so long and they do local anesthetic only.  The physicians assistant talked on putting me under and that is not going to happen.  I will stay just as I am Thank you.
That will leave me with 13 broken vertebrae that have already solidified.  Thanks Prednisone

Between now and Tuesday they also want to do another physical and history.  What,  I have had 2 physicals, 4 x rays and an MRI,  what more can they possibly need.  I am going to try to get out of the physical.

I am having a much harder time breathing after walking just a short distance.  10 to 15 ft, but I do recover my air quicker I think.  Yet when the nurse listens 2xs per week nothing is different.

Don't get me wrong, I am grateful for each day, but in 7 short months my entire life has changed, my marriage has completely flipped and I have to put myself in the care of my husband.  This is a difficult journey we are learning together, but at times it is very difficult.
I try so hard not to complain, but I tell you it is not easy.

That is all for this time.  I will keep you posted on my progress.  Fingers crossed for Tuesday.

Be Well and God be with you till we meet again.

New Back Info

Good afternoon Family, Friends & Guest,

It looks like I will see the Doctor Monday 22nd and have the actual surgery on the 25th.   10 more days.  I can do this.  Yes I can.  Dr. Gieger will do the surgery, I assume he will do 1 more MRI before or durning surgery.   Fingers crossed please for a good outcome.   Thanks.   Nap time now.

God be with you and Be Well till we meet again.
My Love

Oh My aching back

Hello Family, Friends &  Guest,

I had my MRI last Thursday evening and it was discovered that I have 14 broken vertebrae in my back.'
The link shows the preferred treatment.  They need to do this soon as I am almost outside the window for the most help.  After reading the page on the link you will see they are mostly going to glue me together.

I am scared about this, but it is the best treatment and I must trust in the doctors.  I don't have a date yet, but I believe it will be in the next few days as it should have been done like yesterday.

I am looking forward to this working and giving me back some mobility.  At this point 50ft and I must stop, sit down and rest before I can go again.  The breathing is harder to get what I need, but I need less.  It just takes a lot out of me to get it.


http://www.spine-health.com/treatment/back-surgery/kyphoplasty-osteoporosis-fracture


You are all up to date for now, I will write again soon.

God Bless & be well till we meet again.

Random thoughts & catching up!

Hello Family, Friends & Guest,

Well they say "The road to hell is paved with good intentions."  In that case, I got me a 6 lane highway going right that way.   Way back on May 27 th, I had decided to write in this blog at least once per week, well here in my next entry on August 6 th.   Shame on me.

The good news, I am not going to try to catch this up, but rather just do highlights, otherwise you would be so tired of reading,.

The bad news, my back is still broke and keeping down a lot.  I had a MRI on Thursday and I will see Dr. Howlin and get the result on Monday the 8th.,

I can do about an hours worth or pushing it 2 hours worth of activity a day.  Not at one time but through out the day but then I am exhausted.

I did get to the Lake for a Visit.  I did get to Judy & Bill for a day long visit with extra oxygen and got in the pool.  I have been to the Valley Ranch pool a couple of times per week.  I can't swim, but I can walk it and float on the steps.  Katherine joined me at the pool a couple of times and Lori takes me.
This picture is of the Robards pool.  We had such a grand time.

Ray has been able to get in a little fishing with Frank.  They catch and return just for fun.  It gets him a little time out of here.

I have a hospital bed in the livingroom.  Helps with my frame of mind and I don't have to spend all my time in the bedroom.

Jason and his family moved into their new house this week.  I am hoping to go see it with furniture etc today or tomorrow.  Jillian and Sophie are growing like weeds, same for Owen and Kate.  We can really see a difference in Owen and Kate's personalities this summer.  I will post pictures next time and I wast to post one of each. Jillian in taken a couple of steps.  She is 8 months old already.  Time just flies by.

Ray and I are having a memory history done.  It will be about an hour on tape and will answer some questions the kids might have and provide maybe a couple of nuggets of advice like Where Sunscreen.

This is short but sweet and has now gotten me back on the horse so watch for more soon and more ofter from here on.

Be Well and may God Bless you till we meet again.

Ray is learning to cook a little which has been fun to watch.  This week he made pork chops on the grill twice.  and they were good too.

Next weekend is Dexter Daze and I will be buying some more Fairy Doors.  I'm excited.

To Live Until I die

Good Evening Family, Friends & Guest,

Today well actually Tues I decided to continue this blog with info on my condition, but to also include some of the fun things we do around here.

As most people know by now, I have a couple of fractured vertebrae as a result of long term use of Predisone.  I think I did something to my back again today.  I talked to Dr. Howlin and she does believe I will heal, but it takes 4 to 6 weeks from diagnosis.  Even though we think I did this April 27th, diagnosis was last week.  So I will just take it slow and easy for a few weeks.  The hospital bed is not that attractive, but now with the air mattress, I think it will really help.

Last Sunday afternoon Katherine and I spent a nice fun couple of hours making our fairy doors.  We both knew what we wanted and set about fixing them up.  Katherine had to paint hers, mine started out the color I wanted.   Mine hangs on My bedroom door, Katherine wants a shelf to put hers on.  I am planning to buy more and make more.  Katherine and I want to put some both inside and outside.

We are coming up on the 1st holiday of summer.  I wonder how many out there know what this holiday is for.  When I was a little girl we called it Decoration Day and we would go to the Cemetary to place a flag on the grave of a soilder.  I have included an HTML link at the top to a Wikiapedia article.  I hope you take the time to read it and if you see a vet this weekend thank him or her. Also if you happen upon a parade and can stop and watch.  Remember to always cross your heart at the 1st US flag you see leading the parade and young boys/men should remove thier hats in respect.

I am hoping to spend some time with Katherine, Leah & maybe Lori tomorrow.  I hope I feel a little better.  I have a new patch to try tonight for pain.  We shall see.

Have a safe, fun holiday weekend.
That's all folks.   May God be with you &  Be Well till we met again.

Step on a crack

Good Evening Family, Friends & Guest,

The Relay for Life is tucked away for the most part for another year. I am already planning to walk next year.!  I thought when I signed up to walk the survivor walk that my biggest challenge would be getting enough air.  Little did I know at the time that I had 2 fractured vertebrae. It seems that when I coughed way back when and I could not get better or find relief from the pain it was due to these fractured vertebrae. In hind sight I think it happened on the 27th of April.  They are stress fractures caused in part from the steroid used to try and treat Pulmonary Fibrosis.  A true Catch 22.

That is all water under the bridge now. I had a grand time.  We walked the survivor lap.  Ray and Lori and others walked the care givers lap.  We had a bite of Breakfast and bought our fairy doors. I had surprise visitors as my sister Sharon came to Watch and My long time friend of over 30 years, that I had not seen in 3 plus years came to cheer me on too.  Then we headed home to rest for the 2nd part of the day.  My long time friend Kathy came to the house for cake and coffee.  She headed home and I rested for several hours.

About 8:00 pm we gathered again for the lighting of the luminaries and the scrolling of the names of those who have, or have had, or died from Cancer.  It was  beautiful and worth all of the pain involved just to see it.  Bonus we (our team) raised about $15,000.  That includes the sale of fairy doors, fairies, angels and calendars and a yard sale.  Our team did a great job.

I had a great time and would not have changed a thing (except maybe the back pain).  I was so proud to stand among those strong men and women.  Survivors, Caregivers and People who simply care.

That's All Folks, Love and Prayers, Be Well!

Injured Back, Drugs, Drugs give me drugs.

Good Evening Friends, Family & Guest,

Well as I may have mentioned in my last post, I have injured my back. I was attempting to stand up, so of mid stand, knees bent and I coughed and bam Instant pain. The first couple of days were not too bad, but by Saturday, I could not stand without support.  I called Hospice and a nurse came out.  I was advised to take morphine 20 to 40 Mg every hour and 600 ML of Motrin every 3 hours.  She also ordered Methadone.  The Methadone came today, so I also take that 2 times per day.  I can hardly function, but it does take the edge off.  If I am not better by Monday, I am calling my primary to find out just what is going on.

With all this medicine I am not asleep nor am I really awake.  It is just strange.

It is getting warmer here finally, was able to be outside for a while today.  The sunshine just lifts the spirit ya know.

We made these as a family project Sunday to place at the relay for life.   It was big fun.

That's All Folks
Be Well
.

Good News, Bad News

Good Morning Family, Friends & Guest,

First the good news.  I have had two weeks of  a feeling of generally good health.  I still can't breathe any better, that's not going to happen, but yet I have felt pretty good.  I have an Oximeter on loan for a month from my oxygen supplier.  It seems the numbers stay the same at 6 lpm and 8 lpm so I will be using 6 this week and see what happens.  I really only wanted it for the survior walk next Saturday the 14th.  http://apps.facebook.com/bf-tacs/?ref=bookmarks&count=0.   Check out the link for more information.

Now for the bad news.  On Wednesday last, I was attempting to stand up (in mid stand) and I coughed.  Something pulled or snapped in my back and I very nearly went to my knees.   For the next hour or so it wasn't too bad, then it started getting worse.  Well, yesterday I could not get out of bed without holding on to something.  It was so painful I thought I would just fall down.  I called Hospice and the consensus is that I have Sciatica Nerve Pain.  I am taking 600 Mg of Motrin every 3 hours in an attempt to get the swelling down.   Prayers Please,  I am determined to do this WALK and not in a wheel chair Dang it.

We really need to get busy and get my funeral complete so we are all on the same page when the time comes. I beat the prediction again and I plan to keep on Keeping on but...............  My house needs to be in order.

We have been fixing up the patio this week in anticipation of using it a lot.  We have lots of birds and even saw a Scarlet Tanager the other day.  We have never seen one before.  We also have not seen it since.

The kids are all coming over this mothers day and we are all going to decorate bags for the luminiaries for the Relay.  I expect it will be great fun. Also Jason is bringing Pie.

Have a wonderful day this beautiful Mothers Day in whatever you choose to do.
That's all folks, Be Well

Spring, Crying, Progressing

Good afternoon Friends, Family & Guest,

I look out my window and just in the last couple of days the trees have burst open and everything is green.  Looks so beautiful!!!  We have a pair of Red breasted Grosbeaks top Picture Males, Bottom Female.  We have never has a pair here as I have never seen the female until yesterday.  Now we have two pair and we are thrilled.

I  have really felt quite well this week.  Four days without a nap and only a couple of crying times.  Anyone who knows me, knows I am a crybaby.  I have cried at the least little thing my entire life. I do not nor did I ever cry for sympathy, I just can't help it.  Since the Cancer Diagnosis I probably cried a couple times a week, usually brought on by thoughts of dying.  I am not afraid to die, I just don't want to yet.  http://www.youtube.com/watch?v=t9aLjTBY04E.

Since the Pulmonary Fibrosis Prognosis in January of three to four months,  I thinks I cried a million times.  The thoughts would just come unbidden and the tears would fall.  Not tears for me, but How I projected my loss to affect my family.  How sad they would be etc.  After all at funerals we don't cry for the deceased we cry for our loss.  I do cry too for what I know I will miss.  One never knows cause ultimately God is in charge of our ship, but I really doubt I will see Jillian enter Kindergarten.  As I said the other day, I do know I am not going to die by the end of my prognosis date in 2 days.  Maybe that is why I have barely cried this week at all.  It could also be that my soul mate, friend and caregiver has been home so I am feeling safer.  http://www.youtube.com/watch?v=Rde1NhBNV1M
Whatever the reason, I have certainly cried less.

I work hard at living one day at a time, with plans and goals for tomorrow and beyond.
This I know for sure - Assume makes an Ass out of  U and Me.
That's All Folks
Be Well

Breathing Air

Hello and Good Day,
Actually I have had 2 really good days.  Energetic, feel fairly well, etc.  Which of course makes me question " Do I really have Pulmonary Fibrosis?"  but of course I know I do, I just have to walk across the room with all this oxygen to know I do.

Breathing - here's the thing. Breathing is one by rote, but I am aware of my breathing at least 20 times a day if not more.  I will just be sitting quite and notice that my breathing is calm or labored or my mouth is open (meaning I need more air). This is not to mention when I actually walk somewhere or move around.  People without PF are not aware of this.  When I am just sitting quite, I do not know why the pattern changes, I just know it does.  When I am doing something I am less aware (or I just ignore, I'm not sure which) like baking or cooking.  I won't notice until I am almost gasping for air.  This doesn't take long, but I am not sure how long.  Then I have to stop and rest.  I had to sit down to stir the jello for Easter.  My dear husband Ray pointed this out to me.

Reverend Beth came to visit today and it was wonderful.  She is yet another God send from Hospice.  I am suppose to be dead by next Wednesday per the prognosis of January and we all no that's not going to happen, at least not from PF.   Did you know that the Word Breath in Hebrew is Spirit.  Wow!

I have been thinking more about how long I have had PF before diagnosis and I think it is 5 years.  Rhonda, I remember you asking me at the TC the 1st summer at Quincy Park "Aunt April why are you breathing so hard?"  I don't remember you asking me that ever at Sunset Cove.  What do you remember?  Given this info, I have had this disease 6 years and 3 months.  With my only escalations being when we screwed around with the Prednzone. Those escalations where both huge.  Just saying.

My back is still giving me lots of grief and I am trying to pay attention to when it hurts and I am really starting to believe it is due to lack of oxygen.  More to come on that another time.

Everything I read about IPF talks of a terrible cough.  I do not have a cough (thankfully)?   Anyone else out there with IPF without a cough?

Love and Prayers, That's all folks.   http://www.facebook.com/#!/PulmonaryFibrosisFoundation

Oh what a difference a Year makes

Easter 2011 is in the history book.  One year ago we shaved the balance of my hair off from.  Most had fallen out due to the last Chemo treatment which was a full on blast of chemo.  I was devastated to say the least.  At the time we felt the Pulmonary Fibrosis was the least of our concerns.  Well my hair has grown back in and has been cut three times since then. I have to keep it quite short now due to the PF.  Using my arms to dry and style it takes too much air.

I am happy to report that to the best of our knowledge I am still cancer free, but as you know if you have been following this the PF has marched forward with a vengeance.   Other than being tired all the time not much has change disease wise since the January prognosis of 3 to 4 months.  However my life as I have known it has changed drastically.  My shrinking world is taking a lot of getting used to.

I can no longer go to a store by myself (except a grocery or a store with an Amiga) as I can't walk around and shop anymore.  

Trying to go visit anyone more than a 15 minutes away becomes a task on how to take along enough oxygen.  So mostly I just stay home.

My family would like me to quit driving altogether but I am not giving that up yet.

I am making plans to walk every nice day.  Will this spring ever get nice.

The nurse comes to see me 2xs a week.  I visit with a social worker once a month or so and the same with Beth the Hospice Minister.  I also have lots of friends that visit.

Facebook has become very important to me to help pass the time.  I plan to do small project too.  I want to read more too, but I have to turn that blasted TV off first and I find myself just laying on the couch and watching.  Can't tell you what I am watching, but I'm Watching.

On a high note, I am planning on walking the Survivor lap at the Dexter Relay for Life on March 14th.  Thought I might try to raise a little money for all cancers while I am at it. Check out my page if you are so inclined.  http://main.acsevents.org/site/TR/RelayForLife/RFLFY11GL?px=20818750&pg=personal&fr_id=30160

I have lots more to say, but it's been a fun but long day so I am closing and going back to the couch.
Happy Easter Everyone.