Singin' The Prednisone Blues

Hello, everyone!!!

As the title post says, I am definitely singing the predensione blues.  This week I'm on 10mg a day, which is half of the 20 mg I was on before.  It takes me about one hour to get from the bedroom to the bathroom in the morning, right when I first get up.  Thank God for the narrow hallways, as I hold on to both sides to give me support down the hall.  Then in the sink I lean on that to wash my face and brush my teeth.  What is so amazing to think about was I was on 10mg a day about 3 years ago and felt fine!  But then I started gaining weight and that is what really put added strain on my bones and joints.  I have no one to blame but ME!!  I wish I could go back in time and not have gained that weight.  But as they say, hind sight is ALWAYS 20/20.  How true!!
I guess I'm "paying the piper" like my dad always said!!  And what a piper to play!!

As you all may know, I recently received "The Sylish Blogger Award."  Here are some of the lucky blogs I blessed the award with.  Some have chosen to receive it and put it on their blog, and others have not.  It's their choice.  Please stop by their sites and show their blog some love!! :0)  Here's the list:

My Life In A Blog  This is one of my favorite blogs.  Not because Gina is my dad's girlfriend, but because I like her as a person and her blog shows her hard work!  :0)

Looney Life - My Life As A Housewife and Mom
This is one of my dearest childhood friends that we found each other on Facebook and then on Blogger!  She has such a beautifully decorated blog, you should stop and see it.  She already decorated for Christmas, which is her (and mine!) favorite time of the year!!

A Real (Upstate) NY Housewife  This, too, is one of my favorite blogs.  Martha really says it like it is and I LOVE that in a person.  She is involved now in a campaign where you write a post a month for November and combining that with a letter campaign where you write letters to your parents, ex boyfriend/husband, to a stranger, ect.  The letters are very good!!  Stop by and see for yourself!!

Life And Fibromyalagia   I just love this blog by Heather!  She puts her whole heart and body into it and it shows!  She just recently had her mother die from complications of Alzheimer's disease was taking care of her at her childhood home.  And what a fine job Heather did considering she, herself, suffers from fibromyalgia.  All mother's should be as lucky to have such a devoted and caring daughter.  When you have a moment, stop by her site.

When Hello Means Goodbye
This is a cute site featuring Grayden, a precocious 2 year old that has completely filled the hearts of his adopted mom and dad.  The adoptive parents went through a horrible nightmare of losing an infant just moments after he was born.  Very sad story, but incredible blog.

OK, that is it for the award round-up, I will be giving out more soon to those sites I find adorable and educational!!  So watch out, I may be surprising you with the award!!

Now for the beautiful scenic picture.  Here goes:

This was taken when my mom, dad, me and Frankie went to the Wild Animal Park in Escondido, California.  We had so much fun on that trip and took so many pictures.  I love pictures - in case you didn't know that...LOL!!!!!!

Here's the poem I selected for this post.  I hope you like it:

The Conch          

I first saw the conch
When I was walking on the beach.
Just walking,
It came from nowhere
Going absolutely anywhere.
I looked and it was there.
I leaped forward
As I had never seen one before.
It was so beautiful,
And curved with an angels touch
I just knew it's sound would be perfect.
Calling anywhere to anyone,
Calling them to come join me
To make me happy,
To lessen my sorrow.
Yes, I wanted to hear it
So bad that it ached the
Edges of my heart.
I have called others before
But they are close
But yet far away.
Never there when I need them
But always home.
I need that conch
To reach a lonely heart
That matches my heart.
It will call far
And I will have a new and better chance.
As I reach down for the conch,
I am just brushing sand     
With fingertips.
It is like there was no conch
Only my silly dreams and
It is like I imagined it.
I stand up,
Heart broken for a moment
While a new wish fills my heart.
Someday I will have that conch
And it will bring me a love so deep
I never could have imagined.

Hope everyone has a great Saturday and Sunday.  Geez, it's so hard for me to think today what with having fibro fog and all.  And I just used some of my Polar Frost gel and got some of it in my eye!  Aye Carumba!!!!!  That BURNS!!

Have a great weekend!
God bless!

Whew!

Howdy, friends!

That about sums it up about my day.  My husband got paid and we did our usual thing like we do every month.....buy all our pharmaceuticals, cat food (Jack would be ONE unhappy kitty if we skipped that part of the routine!), electrodes for my TENS machine, we washed the car, got cash from the bank, went to Checker for an air filter for our "baby", and stopped at the grocery store.  We JUST got back home and are exhausted.  My feet are sooooooo big I can hardly bend them.  I cannot WAIT for my weight loss surgery.  It's detrimental to my health. I can barely move around WITH my walker.  I can't bend down.....there's just so many things I can't do now, but I can do when I lose weight.

My husband and I are going to a support group on November 17th as part of my weight loss program.  It sounds really good-it talks about holiday eating and how NOT to blow it over the holidays!  What is the norm?  Gain 5 pounds over the holiday season?  I know they did a study about that, but because of my fibro "fog" that's another thing that got lost in the fog!  Anyway, at my initial assessment they said it would be beneficial to attend the support group even before I've had the surgery.  That way I can ask questions about what to expect.  Maybe take away some of the "fear" component of going under the knife!!
I really am scared (and excited about the outcome) about what's coming up.  I hope everything goes OK.

Well, I gotta eat supper and then put my poor, blown up feet high up on my elevator pillow edge and attempt to read my Janet Evanovich book.  I've got her brand new one out, "Wicked Appetite."  I just finished her other new Stephanie Plum book, "Sizzling Sixteen."  If you like reading funny mysteries, she is your author!!  I just love her to death.  I should have listened to my mom long ago and given her a chance!  Oh, well, I'm reading her now and have her whole Stephanie Plum series.  If you want to check her out, she has a cool website at www.evanovich.com.  I should get commission, don't ya think? LOL!

Hope everyone has a great evening (or morning, wherever you are) and I hope I made it easier for my foreign visitors by adding a website translator at the top of my blog.  I was reading my blog stats and I have a lot of foreign visitors, so I thought I'd be nice and add that.  :0)

TO DAD AND GINA:  I hope you two are having the time of your lives. You both deserve it. Post more pictures, please.  And for all my faithful followers, Gina is a new blogger and you can find her by clicking HERE.  I'm sure she would love the company and some new followers.  She's a really great gal whom I'm growing to be quite fond of.  So Dad, don't mess it up!  LOL (just kidding)!  I love ya both!!

God bless you all!
Until next post,

Where Did Tuesday Go?

Boy, oh boy, I can't believe Tuesday is almost over with now.  This week has started out fast!  Has it gone fast for anyone else?  Maybe I'm just nuts with fibro fog....yeah, I think that is it!!  :0)

I took a picture of my beautiful new shower chair. I haven't taken a shower yet, I'm thinking either tonight or definitely tomorrow morning.  Today was a busy day with running out to Frankie's pain specialist appt.  And we picked up a copy of the CD and printed reports of my tests so far for the bariatric specialist.  I took at look at the reports and they didn't get the one where I had BOTH legs scanned for blood clots and it was negative.  If I take the packet in now, it looks like I still have a blood clot and would be eliminated from surgery.  I definitely DON'T want that!  So tomorrow I'll call the imaging place and have them look again for my report on both legs scans.  I know the doctor has it because she read it out loud for me and it confirmed that both legs were FREE from clots...in fact, there is no evidence there to even conclude I ever had clots in my legs!  That's the report I want.  And hopefully I can get it!!

Anyway, back to my shower chair.  I took a few pics of it to show it off.  It will be so nice to take a shower in comfort and not have to brace myself against the shower door or the wall.  That makes it so hard to clean myself!  But with the shower chair, I can sit and even shave my legs.  I'm so excited.....never though I'd be excited over shaving my legs before!!  LOL!

It fits in like it was custom made for the tub.  I thought we would have a hard time finding a shower chair that was durable for a heavy person and small enough to put in the stall.  We have shower doors instead of curtains, so that was an added complication, too.  But it all worked out and I think it looks perfect!!  Gosh, listen to me.  Most people rant on and on about their new house or car.  Me, I rant on and over over a shower chair!  Am I getting OLD?  LOL!!!  We bought this chair at where else.....Active Forever! Check them out, they are the greatest!  Nice & educated staff and reasonable prices.  Their website is: www.activeforever.com.

Well, that pretty much wraps it up for this post.  I'm too tired to do a memory lane trip tonight, so I'll end this post with one of my poems.  Hope that is OK.  You all have a wonderful night.

A Land Where I Live
Just when you think everything is safe and sound
You feel the world at your feet.
Look the other way-where is the happiness you thought you found?
Turn around and see everything is a disaster.
All that you worked for is gone-
Did you really think now you can hear the children's laughter?
Look behind you and hear the bird's singing
Or are they really?
Why would they now-after all today's bringing?
But hang on and don't despair
Maybe things that went wrong will go right-
Even if the things are something nobody can repair.
Or if you can't wait-I have a land.
A land where I live
With a bright ocean and cool sand.
A land where you can never feel blue
And things that are lost, are found.
A land where dreams come true.
Oh, this land that I found
Is so grand and peaceful.
Don't be afraid to just look around.
People are no longer in a hurry
To get to work to pay endless bills-
And away with endless worry
As sweet as a spring day
This is my land-
hear the birds sing and the trees sway.
A land I never have to leave-
I live here
You can too-all you have to do is believe.                                                                                              


I have a land
A land that I live
With a bright ocean and cool sand.
peaceful have a land where I never feel blue;
A land that I live-
Where all my dreams come true.


Hope you have a good night and sleep tight.
Hugs,

62c4d810-2ab6-4f75-b394-bfadfb2c3c7e

1.03.01

To Virginia We Go!

Howdy, friends!

Hope you have had a pretty good day so far.  I've just been putzin' around on the computer, doing a little of this n' that, stuff that I've neglected for a long while.  But I'm all caught up and ready to blog!

Remember me telling you I had a speech impediment and there was a course in Norfolk, Virginia that dealt with the cure of stuttering?  Well, today, if you don't mind, I'll tell you a little bit about that adventure.  And it sure was an adventure!!  We were there for a month, so I'll just pick out the funny highlights of the trip.  The course itself was wonderful and I got a scholarship for $1500, which is great because if I hadn't gotten that, I couldn't have gone. The total course was $3,000.  Cures don't come cheap, do they?

Anyway, we took this trip in September of 1999. We rode into Virginia on the tail of Tropical Storm Dennis.  Man, I never saw it rain as hard as it did then!  It was so cool!  Thank God Grandma's car didn't leak, or we would have been soaked!  We had reservations to stay at Motel 6 for the month, which wasn't too far from Eastern Virginia Medical School, where the course was being held.  Here is a picture of the downpour at the motel:

We had to move our stuff in this rain! And here Mom had bought her desktop computer with monitor along, too.  We covered that up with our jackets and ran everything in.  Mom had just had her first hip replacement in March of that year, so it was funny to see her run!  That God she didn't fall!  The room we had gotten was interesting indeed.  The bathroom lights were on a 15 minute timer, the door knob kept falling off, we didn't get a good range on the TV and there actually was a roach crawling along on the floor!  Grandma immediately called the front desk and told them about the roach.  I was so looking forward to going swimming during our stay, but when I got a look at the pool....let's say it didn't take me too long to put my bathing suit back into the suit case!  Here's a pic of the pool with the lovely green slime:

Isn't that gross?  I took this picture so that we could send it to Motel 6's corporate office when we got back home to Arizona.  Moving right along...because of the downpour when we arrived, and the dampness in the air, our shoes hadn't quite dried yet the following day when we went shopping to get food and liquids for the next week.  Now, Mom and I were practical and had a spare pair of sneakers.  My fancy Grandma, on the other hand, must have thought she was going to a ball or something because the shoes she had to wear were these fancy black shoes with a silver buckle (if I remember correctly...I was laughing so hard at the sight of her in those shoes and her red shorts and t-shirt!)  Here's the photo:

 Sorry, Grandma, it was just too good to resist!!  I think we laughed all through WalMart.

I had the classes every day from 8am to about 5pm.  I had the weekends off, so that is when we would go and venture out and sight see.  We went on the Chesapeake Bay Bridge which I absolutely loved!  That sucker goes right INTO the ocean!  It was hard to believe that when we were in the tunnel part we actually were in the ocean!  Mom was really nervous, of course she never liked bridges.  So I thank you, Mom for driving me through it, fear and all!!  We stopped at one of the little parking areas and just relaxed and looked at the ocean on one side and the bay on the other. Here's a few photos:

 

Here I be, wearing my favorite Nashville shirt.  I wish I could say I saw Nashville first hand, but one doesn't count a blurred zoooooom from Parnelli Grandma as she zipped by at 80 miles an hour!  I got this shirt at a gas station way down the road from Nashville.

Here is a photo of a white, sandy beach somewhere along the Chesapeake Bay Bridge.  I'd forgotten exactly where, so please forgive me. Blame it on Fibro Fog!

We also traveled through Norfolk, too, and saw the Naval Dock Museum, I think it's called.  Here are some photos:

Boy, you certainly can't miss me in this photo!!!  What on Earth would possess me to buy an ORANGE shirt?  Blame it on the fibro again......

We actually went through this little tug boat and it was very fascinating.

Here's a beautiful shot of downtown Norfolk as seen off the dock of the Naval Museum.

My mom and Grandma in this pretty little park, waiting on me to take my
standard 10 rolls of film on essentially the same thing.  But it's not!  No two pictures are TOTALLY alike!!  :0)   Anyway, we go back to the car and that is when we discover one of the tires is totally flat.  Well, none of us really knew how to change a flat and Grandma was starting to panic because her "baby" had a flat and should she buy just ONE tire or all four?  The funny thing is, she had the tires checked right before the trip and Honda said they were good to go.  Luck was on our side and this very nice man who looked so much like Montel Williams came over to us and offered to change our tire....free of charge! He wouldn't take even a tip.  I took a picture of him because he resembled Montel so much, but I wasn't thinking straight and here's the photo I got of him:

LOL!!!!  So unless he resembles Montel's rear end, you won't be able to see how much his front side resembled him!  I was so mad at myself!!  How could I be so stupid?  Anyway, we pile into the car and head off to Discount Tire.  In the end, Grandma changed all four tires because of the long way home and if one tire could go bad, then they all could go bad.  Can't argue that logic!

When we returned to the motel to collapse, we found someone in there who wanted to hang a photo on the wall.  We had no clue who he was, he was wearing plain clothes and just said he was to hang this picture up.  Grandma shooed him away.  Unfortunately, he didn't stay gone because when we were out the following day, he came into our room and installed the picture.  Here's a photo of the picture:

It's a beautiful picture, but strange how that guy was so insistent on hanging it in our room.

While we were in Virginia, we ran into Hurricane Floyd and our course was canceled the day of land fall.  Again, I had never seen rain pour like it did..not even in Michigan!  We were anticipating loss of electricity, so Grandma cooked up our super at 10am and we'd have to eat it cold at supper time.  Then we figured, that's stupid.  It's fixed and we were hungry, so we ate it.  We figured we could go out later if it ever stopped raining.  It did for awhile and Mom and I went on a burger run.  The following day, we went to Virginia Beach to inspect the damage and surprisingly, it didn't look too bad. We could even do the "tourist" thing and take our pictures by the beach balls:

Mom and I on the big beach balls.  The surf was a little choppier than usual, but after a hurricane, I guess it should be!  But overall the beach looked really good.

My course had come to its end and it was time to pack up and head home. Yay!  Although we had fun and a lot of laughs, we missed our own beds, our husbands and just plain ole' home!  On the last day of my class, I had a group photo taken.  I'm the hefty chick in the back row:

Ross Barrett, who runs the program, is the gentleman standing third in the back row.  I'm on the other end of the back row, on the right, wearing the blue shirt and white shorts.  We were a close-knit group and I will miss them all.  I wonder how they are doing today?  I know that class saved my life AND my career.  I hope the others are doing as well.

Our trip home was riddled with misadventures at practically every stop.  The first night we made it all the way to Atlanta, Georgia and Mom was forced to get off on the wrong stop by the heavy flow of traffic - it practically pushed her off onto the ramp.  We stayed at a Howard Johnsons.  We were getting ready to have supper and went out and started walking, because we were tired of the car and we saw a restaurant right by the motel.  Of course, that restaurant was on the OTHER side of the freeway - just the sign was visible from the freeway, making it seem like the restaurant was there, too.  Well, we couldn't see Mom as scaling the fence and racing across four lanes of freeway traffic on one artificial hip!  So, we went into our room and thought we'd order a pizza.  Mom thought it would be good practice if I did that.  So, with menu in hand (one was hanging on our door knob) I got the phone and called the pizza place.  His accent was so hard to understand and I was getting all jumbled up again, so I hung up.  I instantly started balling and ran into the bathroom. I had failed!!  And only one day out of Ross's class!!

My mom picked up the phone and called the pizza place.  Everything went smoothly until he needed the address.  Mom is looking all over the phone, the desk, everywhere but no address was visible.  Mom said, "We're in the Howard Johnson's off of exit...." (I forget which exit.)  Grandma runs over to the front desk for the address and the desk clerk doesn't know!!  Back in the motel room, Mom is getting upset. She said into the phone, "Thank you for your *bleep bleep* concern!" and she slams the phone down and says, "Mother, call and order us a pizza!"  So it's Grandma's turn and she actually did find the address off of some letterhead stationary in the drawer.  She calls the pizza place and we place our order.  Finally!!  Here's a photo of the drama.  I label it "Pizza Panic!"

Notice how Mother has her arms folded in the background and is giving Grandma the look of death.  Grandma has her little menu right in front of her and is just ordering away.  Unfortunately, when the pizza finally came, it was late and so damn spicy we couldn't eat much of it.  We called it a day and went to bed.

The next night, Grandma decides to treat us to a fancy hotel.  We stop at the Holiday Inn Express in Shreveport, LA.  Hey, the Holiday Inn is the Ritz to us Yuma folks!!!  Anyway, we had a nice meal, I had pot roast, corn, mashed potatoes and it was so good.  Until the stomach cramps and diarrhea started in.  I pooped all night and clogged up our toilet!  So I practiced my new found speech by asking for a plunger as our toilet is backed up!!  Aye, Carrumba!

We stopped at the Welcome center and I got a cute shot of Mom by the state sign:

I wish we would have started that custom on the way TO Virginia, but I was so nervous about the class, I wasn't thinking straight.  The next photo is the Texas state sign:

Aren't they cute? I think Grandma was thinking she was Vanna White!  :0)  Grandma always was a little on the dramatic side...of course, she always could see herself on film or stage.....anyway, I don't remember much of Texas, except I saw a lot of bathrooms.  My diarrhea continued on and we must have stopped a zillion times at a zillion places...some of them not so terrific looking!  The following day I felt better.  But the Grandma came down with diarrhea!!  I shared my diarrhea pills with her.  My mom never got it, thank goodness.

Our final stop off before home was in New Mexico.  We were so glad to be out West again, we could have kissed the dusty ground.  But, of course, we didn't.  That would be gross!  LOL....   We made it back to Arizona the following day and boy, was it ever good to be home!!!  As Dorothy on "Wizard of Oz" says, "There's no place like home!" And I believe her.

Over all the little mishaps we had, that was a trip I will never forget.  Just the three of us, traveling the high and low roads across the country and all the stories we shared.  I don't any of us will forget that trip.  It bonded us for a life time.

I hope this post wasn't too long or too boring.  If it was, you can tell me on my new contact form I installed this morning.  It's right underneath each post.  So if you need to contact me and don't want to leave a comment, please use the contact form.  I also have my linky back.  Thank you, Patti, for signing up for it!  I really appreciate it.  Please, other bloggers, sign up. It's free, fun and NO spam.  It's just a blog hop where you hop around to blogs on the linky list.  What is so cool is we share the same code, so everyone should have the same list.

Okay, I've kept you long enough. Thank you for listening to my stories. It's much appreciated.  I hope each and every one of you are doing well.

God bless!
Until next post,
Missy

PS....Mom sent those green slime pool pictures to the corporate head of Motel 6 and they sent us back a note of apology and gave us two free nights at any location.

Lap-Band Seminar

Howdy, fine folks!

Hope everything is A-OK in your world on this "hump" day of the week!  When I was in school, I liked Wednesdays as it meant we were half the way there to Friday. I liked Fridays EVEN MORE, as that meant the weekend and sleeping in.  Ahhh, thinking back to my youth always makes me think hard at how so many things I considered "problems" then are just a little bump on the road of life.  I didn't have the fibro then, or the arthritis. I was healthy - a little on the plump side - I've battled the bulge for many, many years now. I only took an aspirin if I had a headache, which was not very often.  Problems then consisted of a run in your nylon or no chap stick or lipstick on your teeth that you didn't discover until the END of the day!  The problems of now are so much more serious (our crumbling economy, unemployment is up, famine, earthquakes, you get the picture!) and I am no longer the picture of health.  In fact, my medication list is as long as my arm! When I fill out new patient forms and they ask what meds I'm taking I always say "see med list" as I carry a med list with me all the time.  It makes life so much easier!!  I highly recommend that everyone make out a medication list and stick it in your pocket or purse. You won't believe how handy it is to have!

OK, I'll get off my soap box now.  Last night my hubby and I went to Banner Estrella for the lap-band seminar.  My hubby has been enjoying getting out into the open air and has been coming along with me on many of our errands. I think it helps to build up his strength more.  He can hide the drain under his shirt and nobody would even know he has a drain.  Anyway, there were about 10 people who attended and the marketing lady who was doing the seminar. She said that unfortunately, all the bariatric surgeons were busy last night and could make it to the seminar.  Of course! Just my luck!  The marketing lady (due to fibro fog I can't for the life of me remember her name!) did an excellent job of explaining the various surgeries. The Lap-Band, gastric bypass and something called a "gastric sleeve" which is almost like the bypass, but they don't do anything with the intestines like the bypass does.  They cut a portion of the stomach and make it into a pouch that serves as the "new stomach." This pouch is shaped like a banana.  I want the Lap-Band procedure and ONLY that. No surgery to re-route my intestines. There's a lot of risks and complications to that (like dumping syndrome because food is rapidly shunted to the small intestine from the stomach and causes terrible cramps, sweating, fainting, ect.)  The gastric sleeve, even though it leaves the intestines alone and your body has normal digestion, it is non-reversible.

Now for the bad part. Money. The lady collected our forms that we had to fill out for insurance coverage and she was going to have them processed to see what our individual coverage would be, if any.  I should be getting a call within a few days to go and have my initial appointment with a bariatric surgeon, dietician and psychologist and they would go over my insurance and financing.  NOT counting the surgery, there are costs that are out of pocket.  To enroll in their program, it's $500.00.  The psychological exam is $400.00 and the three year diet and exercise program is another $1000.00.  So I'm very, very nervous that I won't be able to do this.  The lady said that for the severely, morbidly obese with a BMI over 40 (mine is 54), the life expectancy to 65 years of age is only 35%.  I'm scared that this is my only option, as I've been dieting for two years now and my weight loss has stopped.  I've even GAINED weight. And my feet are tree trunks.  I just need a miracle!!  I may be seeing my mom sooner than I think in Heaven!

There are financing options available, but with my husband and my bankruptcy and credit history, that option IS history.  Nobody is going to loan us money.  I'm just every scared and nervous and anxious that everything costs so much and I've got nothing!!  I think I'm starting to hyperventilate!  OK, calm down, Missy.  I'll just see what happens.  Please God, do your miracles!

Hope everyone has a good day and I really appreciate all the kind and loving support you have given me.  I value each and everyone of you!!  :0)

God bless ya,
Until next post,
Missy

Unsettled

Hello, all!

I've noticed in all my "blog journeys" that a lot of people are having flare-ups. A lot of people are depressed, in pain, confused and just plain exhausted.  I feel very "unsettled" myself.  My hands are shaky, my legs are riddled with horrible spasms that take my breath away and I'm having whole body jerks at times.  I can't even begin to say what medicine is responsible for the above, if any. I take so much stuff to get through the day, it's ridiculous. I made a list and counted out my medications and I take 23 medications a day!!!  I kid you not.  Every time I go to the doctor, seems like we are adding one more and not taking any away.  It is my hope that if I get the Lap-band procedure and can lose weight, I can get rid of the hypertension and diabetes medications.  Maybe even go down on the prednisone.  Wouldn't that be nice?  Maybe I would even get my face back, instead of looking like the surface of the moon!

My feet are still huge, absolutely NO improvement has been made. I haven't had "normal" looking feet since February, after I got the back injections.  That "Baxter's nerve" thingy in my heel is still killing me, so I'm limping around the house as I can't put full weight on either leg without severe pain.  I just finished putting away a few dishes and I'm so sweaty, you'd think I just came back from a 5 mile jog!  I just feel absolutely helpless and useless!!  Trapped inside myself.  Have you ever felt that way?

My husband has been very quiet since coming home from the hospital. I've asked him a million times if something is wrong, is he upset about something, or in pain and the answer is always no.  But he has changed since coming home.  I think it's just post-op depression and dragging around that JP drain doesn't help.  It's almost like you can't forget about the surgery and move on while you still have a drain pulling you down!!  Tomorrow he has the surgeon's appointment and maybe he can be rid of the drain.  It still is draining a little bit of fluid, but the color hasn't changed nor does it have that horrible smell before he went into the hospital for the pseudomonas infection.  I hope this mood of his lifts soon.  Between that and my feeling "unsettled", I'm a nervous wreak!! I hope this feeling I have is just a reaction to everything that has ALREADY happened, NOT what is yet to come.  I can't take much more.....I'm tapped out!!  Filled to the top!

Well, it's almost time for my luxurious afternoon siesta.  I'll put my feet up, get comfy cozy and "read" my book....with my eyes closed! That's what has been happening lately. I go to read and the next thing I know, the book is on the floor and two hours have passed.  And I still feel just as tired after as I did before my nap!  Gosh, I love this damn fibromyalgia.  It just makes you feel so good!!!  ARGH!!!!!!!!

I'm sorry about this post.  As you can tell, I'm in "fibro fog" and can't be held responsible for my actions..LOL!  Things will be OK, I keep telling myself. They just have to be.

Hope you all are doing OK.
Until next post,
Missy

So Far, So Good!

Happy Sunday, everyone!

Hope it's been a good one for you.  As the post title says, so far, so good with my hubby!  We've found a solution that has worked the past few mornings for his nausea in the mornings. You'll never believe this, but it's chicken broth with saltine crackers!  And he has his cereal and milk for lunch.  Isn't that a scream?  He did vomit a little last night, but nothing like he used to. So that means that his stomach is NOT retaining its contents and the intestines are finally doing their job.  Thank the Heavens above!!  All those LONG days in the hospital are finally paying off.  That and the Jackson-Pratt drain he has connected has made a big improvement, since the hematoma inside the intestine has a someplace to drain instead of inside his stomach and creating another bowel obstruction, because the fluid can't go past the hematoma.  I sure do hope that sucker is getting smaller by now.  We'll know more when he has the CT scan on Wednesday.

Frankie has been so incredibly tired and sleepy lately. He hasn't even fought me for the computer or to drive the car!  He says he will drive again when his drain is out.  He hates going out in public with that thing hanging down and I don't blame him. I wouldn't want to go out with a bulb containing bodily fluid dangling down either!!!  I think he is so tired because he didn't sleep very well in the hospital and now is "pay-back time" AND because he is anemic.  I brought that up with his primary care doctor and he said he would leave that issue up to his oncologist, which we see on Monday.  Doctors! They are so darned specialized now they have you going here and there for different things.  So I will bring it up with the oncologist, then, on Monday.  We've started him (and me) out on Super Complex vitamin B and sublingual vitamin B supplements to build immunity and energy.  It's too soon to tell, but I think I'm starting to feel a tiny bit energetic.  Not too much, yet, though.....I don't feel like climbing up to the roof of the house or anything..geez, doesn't that make a hysterical image in your mind???  Hehehe!

I've been hanging in there.  Now that things are starting to level out for Frankie, it's all starting to hit me now.  All the long days in the hospital with him, doing errands, lugging my walker in and out of the trunk and all the long nights without Frankie and all the worry.....it's all catching up with me and putting me into quite a flare.  My back has been just horrible.  And to make matters worse, I can't use my TENS too much on it because my sweat mixes with the conductive gel I use and has created an itchy rash on my whole backside!  I've been just clawing at my self and I can't help it, it itches so bad!  So I've been using this expensive cream my dear sister gave me and that helps the itch and brings it down to a dull roar.  So how I'm working the TENS is by placing the electrodes high up on my back where there is NO rash and it's been working OK.

My legs have been pretty bad, too.  They feel like Jell-o when I stand and are weak and painful with cramps.  I've upped my Magnesium supplement with some relief.  I also use my "Myoflex" cream on it and that really helps.  But with all the driving I've been doing, it's no wonder my right leg (the one I work the accelerator with) is more sore than the left.  Stop lights are the killers for me, especially those that seem to be painted red.  My leg will cramp up if the light is too long, so I have to rub out the cramp with my hand until the light turns green.  I tell ya, it sucks to be me sometimes!!!

I don't know if I mentioned this previously-and if I have-please forgive me! We'll blame it on "fibro fog."  I signed up for the August 24th seminar for the lap-band procedure.  My hubby is far along in his recovery that we can move ahead and I am sooooo ready!  I'm so tired of laying on my back all the time.  I'm hoping that just the fact of losing a lot of weight will help my back so much it won't need surgery!  Wouldn't that be nice?  I really don't want surgery on my back, but I'll do it if I must just to get back to work and my life again.  After the seminar, I'll make an appointment with the bariatric surgeon and go from there.  Please pray my insurance will cover this.  I hope, I hope, I hope!!!!

Well, that's the news from our neck of the woods. Hope your neck of the woods is doing OK, too.  Thank you for everything...for your thoughts, prayers, well wishes, comments.....your friendship and reading my blog!!  I appreciate it ALL!!

God bless ya,
Until next post,
Missy

"A Watched Pot Never Boils"

Boy, isn't THAT saying the truth!  It is incredibly slow going with Frankie. Today marks two weeks and 2 days that Frankie has been in the hospital. I truly feel like he lives there...and I live in the car going back and forth to his "new home" away from home!  We both are tired, frustrated and aggravated at this point.  The problem remains that his stomach contents aren't being absorbed by the small intestine like they should. The surgeons have NO idea why, because every test they ordered have come out as normal.  The hematoma inside the intestine is stable, no bleeding from it. Maybe that is what is slowing things down.  At least they have him off the blood thinners, as that would only make things worse and maybe he would start bleeding again. And we definitely do NOT need any new complications at this point.  His red blood cell count is at 13, 2 points higher than 2 days ago. So no blood loss.  It's just a big mystery!

When I get to the hospital this morning I'm going to get him out of that bed and moving all day.  We're gonna take walks around the nurse's station and sit up in the chair for more than 5 seconds.  And he's laying off the pain medication as they have him on the real strong stuff still (Dilaudid) and I don't think he needs that on top of the Fentnyl patches he is wearing.  The IV Dilaudid makes him really loopy and he can't work on his own recovery if he's picking things off the wall and asking the same questions every 2 minutes! 

That pretty much is it. The NG tube is clamped again now. This makes the THIRD trial of seeing if his intestines are working and will absorb the stomach juices. Sounds gross, doesn't it?  I tell ya, it ain't pretty to look at, either, in the suction container.  Maybe I'll take a picture to show you guys....na, I wouldn't do that to my loyal blog friends. :0)  So pray with me that the third time is the charm and he won't get nauseated and throw up and they have to reattach the suction again.  He's been taking the nausea medication with the pain meds, so he hasn't been nauseated in quite awhile.
 
Big thanks to all of you that have offered your input and own experiences to me on Facebook.  I really appreciate it.  With this "fog" I'm under, I can't think straight.  I was at the hospital for 8 hours yesterday and I'm paying for it today. My legs feel like someone is taking an ice pick to them over and over. My right calf is all cramped up, despite taking both Soma AND Flexeril!  Thank God I have my TENS unit for my back, or I'd really be an even bigger mess than what I am now!!  When I got home, I didn't even turn on the computer. I had something to eat and then crashed on my bed. I woke at 6am and am now trying to catch up on my computer work.  I just can't wait until my husband comes home!!!  Will it be SOME TIME in MY lifetime?

Hope you all are doing well. I will pick out one of my poems for the next blog post. 
Until then,
Missy

CRASHED!

Hello, my dear friends!

Yesterday was such a bomb for me. It all finally came to a head and my poor body just CRASHED!  All the previous week's worries and stress equaled one very tired...no, make that exhausted....girl!  I could barely keep my eyes open that when my mother-in-law came in the afternoon to visit my husband at the hospital, she suggested I go home and just go straight to bed. I guess I kept nodding off in the recliner chair and at one point, I just put my head on his bedside table and nodded off there, too.  I THOUGHT I was getting enough sleep at night, but I would come home, get on the computer and start blogging or researching on the 'net or answering emails and get carried away to the point it would be midnight before going to bed. And then with getting up at 5 am, that only gave me 5 hours of sleep. Funny how the body has a way of letting you know when things are NOT enough!! LOL....

So I came home and filled my pill container for the next day, made some fresh Crystal Light drinks for the next day, had a bowl of cereal for dinner, took my pills and went to bed until 9pm. Then I thought, heck, I'll go on the computer for awhile and catch up.  Well, initially I started out alright, but then my mother-in-law was waking me up at midnight as I had fallen asleep at the computer desk!  So I just now woke up at 6am feeling a lot better!  I'm not so cranky now, so that should make my husband's day!!
Speaking of which, yesterday he looked totally FANTASTIC! I took his picture sitting up in the chair to post on the blog, he said that was OK with him if I do that. So here is my boy.....now keep in mind, he still has the nasogastric tube in as he hasn't passed gas yet. That is ALL we are waiting for. So I guess I have a strange prayer request....for my husband to fart!  Ok, Ok, here is the pic of my brave hubby:

This was taken after his 4 units of blood over the weekend.  Doesn't he look great? I could be a tiny bit prejudiced, but who cares.  I'm just so happy he's sitting up in the chair and out of bed!  He even resumed his walks yesterday.  Today we'll see if he can walk a little farther. It will help to stimulate his colon into working and he can get rid of the nose tube!  Here's another cute picture I took BEFORE his surgery of Jackie and Frankie. They got into this morning routine of snuggling together. I'd wake up to this loud purr and look over and see Jack craddled in Frankie's arm. I couldn't resist a picture. So here is that pic:

Isn't that just precious?  Where do I sign up for Jack's life??????? Thought you might enjoy seeing the two men in my life, as I keep talking about them, it's always nice to have a face to a name.

That pretty much is it so far. Hopefully I have better luck today finding a parking place at the hospital. Yesterday I circled around the lot like a shark about 6 times and couldn't find ONE spot, handicapped or otherwise. Just a few for clergy, and I didn't think I could pull off being a priest or anything, so I resorted to parking on the other side of the hospital near outpatient surgery and hoofing it over to the patient wing of the hospital.  It was quite a walk and by the time I got to my husband's room, I was all red faced and my hair a soggy, sweaty mess.  First thing I told him was, "You have GOT to get OUT of here!!!!"  I may have been a bit crabby.....LOL!

You all have a great day and stay healthy and happy.
Love ya all!
Until next post,
Missy

PS...my new support group is going FANTASTIC!  We are up to 111 members so far and it's only been about 24 hours since I opened it. I have room for everyone, so if you haven't joined yet and want to, just click on the facebook badge underneath Jesus up top of my page and it will take you right to the support group page. Then you can click "join."  That's it!!!

Fibro Fog Ramblings

Good evening, everyone! WOW! I cannot believe that my lil' ole blog has grown to have 31 followers on Netblogs and 6 on Google Friends. Thank you so much for taking an interest in my "ramblings." I try not to get too boring, but one thing I've learned with having fibro is that when you have foggy moments, you never know what you are doing or saying! I hate that feeling, as I'm sure all of you that have fibro feel the same way.  If there were two things I could take away from having fibro it would be this: the fibro fog phenomenon and the shin tender points. I don't know about anyone else, but those shin tender points are the WORST!!  When I went to the cardiologist, he does his examination and looks down at my swollen feet and then presses in on both shins, at the same time, with both his thumbs. I about hit the roof! That is sooo tender! Ah, I wish someone would find a cure already for this blasted disease! My life was sure much more simple without it...and cheaper, too. Although I can't complain too much as the state takes care of my medical needs.  Speaking of which, it's my favorite time of year...filling out applications to renew my state insurance plan! Oh, joy, oh bliss....but at least I can do it online now. No more hunching over page over page and filling out the same stuff I filled out last year.

Hope everyone is having a good Saturday. Mine started out with my TENS machine going on the blink. I think it has a short in it, probably all the times it keeps falling out of my pocket. Anyway, I have to keep pounding it in order for it to work and stay working.  Looks like I'll have to get another machine when my husband gets paid. Unfortunately, my insurance isn't covering that part of my treatment, and of course, it's the part of treatment that REALLY works!  But I have no choice but to wait until he gets paid at the beginning of next month to think about getting another one. Drat!  Why do I always have drama surrounding me????

My dad called me this morning and he sounded good. He has his own apartment now and he called Social Security all on his own without me having to remind him to change his address.  He's so proud of his own place and his own furniture. And to think he set it up all on his own.  Maybe Mom and I shielded him too much from the world and it set him back decades. We never trusted him enough to do things on his own and my mom, God bless her soul, was NOT a patient woman. She wanted to do things her way all the time, so sometimes Dad got left out in the cold. MAYBE, just maybe, now that he is on his own, and doing things for himself, that will raise his self esteem and his drug addiction will be more controllable. I hope so. I truly do. He deserves to have some happiness, too, after such tragedy of having Mom just die and leave us so soon, without warning.  In some ways, the end of her life marked the beginning of ours.  We ALL are learning new things, things that Mom always did for us, but now we must do for ourselves.  And that part is good. So there is good that can come out of bad situations.

Nothing much going on this weekend. Our computer is still holding up after the CD shatter disaster that happened the other night.  My sister-in-law is trying to contact the manufacturer to see if they can send the new drive first so we can put that in and take the old one out, only having to open the computer ONCE instead of two times. I think it makes perfect sense. And luckily my sis-in-law can be very persuasive. So give 'em Hell, Sis!!

My hubby and I have the whole house to ourselves for awhile as his parents are away on a casino holiday in Laughlin and Vegas. Sounds fun, doesn't it? And they deserve it, too.  My hubby and I are having fun, too, having time to ourselves and "playing house." We are taking care of their two cute dogs, who miss them terribly and haven't eaten yet for us.  My mother-in-law said that they love scrambled eggs, so we may have to whip up a batch so the doggies will eat.  Boy, oh boy....would they like sausage or bacon with that?  What a life!

That's it for now. We haven't heard from the surgeon yet about Frankie's upcoming surgery. But it's early and he hadn't looked at the films yet taken at the PET scan.  Once he has a "surgery plan" mapped out, he'll set it up and let us know. It'll be good to get this chapter behind us and move on to the next!

You all have a great rest of the weekend and thank you again for following us on our life trail blog.  One thing about life...ours in general....is usually it's always got something going on!!

Stay happy & healthy!
Until next post,
Missy

In The Midst Of "Fibro Fog"

Hello, everyone!
Whew, this is one day that I am glad is almost over. I am so tired, I can barely keep my eyes open and it's not even 6pm yet! Pretty soon my husband and I will have the same bedtime as the school children, or going to bed as the sun is doing down! Gone are the days of young, where I'd be revving up to live the night life. In my teens and twenties, I LOVED the night life and felt more alive and functional. The mornings would be horrible for me and I couldn't ever get awake before 1pm most afternoons. That is why when I worked, I worked the night shift. Not because it's quieter (anyone who says THAT obviously works days as night shift was NOT quiet at any hospital I ever worked at!) but because I was a lot less stiff and my joints had a long head start to be functional by the time my shift started at 7pm.  And the infamous "fibro fog" would have lifted by that time, too. Not always, but most times.

I don't know if I ever explained the term "fibro fog" to those of you that don't have fibro. It's a condition that renders your brain completely blank at certain times of the day or night. It brings no warning....one minute it's here and you couldn't have a rational thought to save your life and then the next minute it's gone, and you can think again!  It like a heavy blanket over your brain....it just gets "dull" if you know what I mean. That's the best way I know how to explain "fibro fog."  It just makes you feel numb and dumb!!! People ask a question and you just sort of stare back at them, not knowing what on earth they are talking about!!  I guess when you are older, it's called having a "senior moment." Whatever the name, it sucks!!! And I've been in this fog on and off for a matter of a month now! When I need my brain the most, it takes a hike!!!

Anyway, today Frankie had his PET scan that will show his surgeon if he has any "hot" spots inside him of cancerous activity. Cancer cells grow much quicker and use up glucose, so with this test, he is injected with a radioactive dye based on glucose so the cells inside him that "gobble" the glucose up the quickest will light up on the scanner as being "hot" or red spots.  This means that that area of his body has a tumor there that is quickly growing and using glucose. If nothing is seen on the scanner, then he is "cold" as nothing has eaten the glucose injected inside his system. We are hoping that is the case. But, if worse comes to worse, we are catching this at the very earliest stage and treatment options are much better. In Frankie's case, the only options are surgery and that medication called Gleevec or Sutent.  We will know much more after the surgeon gets the results and see what course of treatment he should be started on.

I'd be lying if I said Frankie and I are taking this well. We are both very scared and worried inside. We've dealt with this before and thought our battles were over, but nothing, I"m finding out, is EVER really over with. It just kind of lurks in the background, waiting to pounce.  We both haven't been sleeping well, so naturally my fibro is taking full advantage of this fact and the "fog" is worse than ever. I don't even know what day it is, for Heaven's sake! I didn't learn until late last night it was Tuesday, not Monday like I had thought!  So I missed "Hell's Kitchen" premier because I thought it was Monday night! :(  I swear, I need a keeper!  Frankie and I have so much going on at the same time, our appointment book is just a big mess.  If we didn't have doctors to go to, we'd have no where to go!!!

The swelling in my feet has been horrendous today. My shoes gouged into my feet, leaving deep crevices in them that hurt sooooo bad. After I write this post, I'm going to lay down, prop them up, and call it a night. I waited over 2 hours in the little waiting room at the PET scan place and just sweat my butt off as I don't think they had air on in there.  It got to be 97 degrees today and my hair was just soaked. The receptionist felt for me and said, "I turned the air up more for you!"  (Is it up or down for cooler? See-that fog again!!)  ANYWAY, when the test was over we got back out onto the roads of rush hour Phoenix. My favorite time of day!!  But we finally go home and I took off my damp clothes and got into my nightshirt. My feet are KILLING me....swollen, pain, pins and needles, everything rolled into one.  Tomorrow I gotta go shoe shopping at Walmart and get a larger shoe. Hopefully they can find the cause of my swelling and fix it.  I keep praying for that!!!!

Well, next on the calendar is Frankie's test on Friday where the surgeon takes a camera down his esophagus into his stomach and examines what is down there. Hopefully NOTHING is there. Then he will inspect a little of the small intestine. Maybe take some biopsies if able. Then we see what happens with the biopsies and when he will be scheduled for surgery to have them removed.  So please keep us in your thoughts & prayers. We need 'em and we pray for you, too.

I'm gonna close and give my poor brain a break. The heat is here to stay in Phoenix, we'll be up to 110 by the early part of next week.  Why can't we have these health crises during the winter?????

Hope you all are happy and healthy and thank you for "following" me along with my stories.
Until next post,
Missy

Merry-Go-Round

Good afternoon, everyone! Hope you all had a terrific Memorial Day yesterday. I honored my grandfather for his service in the US Army during WWII as a MP (Military Police.) He was very proud to serve his country and was in the Army for 4 years, 2 of those years overseas in France and Belgium. He didn't talk a lot about his Army days, just that Belgium was the most beautiful place he had ever seen.  I miss my grandpa, he died in June of 1993 of end stage Alzheimer's and stroke.  I am glad he is no longer suffering or scared to be locked inside a brain that doesn't know who the people around you are, or even yourself! Damn Alzheimer's disease! I could go on and on about how horrible Alzheimer's is, but we all know by now what devastating effects it has on the WHOLE family. I know I do - and I never want to go through that again!!!!

I woke up today feeling really crappy. Extremely exhausted (as if I'd been partying all night - I WISH!) and achy from head to toe. I took my morning pills, but they didn't work this time...just add to the exhaustion that I started out with.  There's so much work to be done around the house, and I can't do any of it. My back is so bad, bending down is a nightmare. My legs feel like something is biting them, I feel little "pinches" down on the tops of my swollen feet. When I go to look, of course, nothing is there. And then they start to itch.  When I scratch them, I get that all too familiar "pins and needles" sensation that lasts any where from 5-30 minutes. Then the pain starts back up.  Around and around we go.....I'm on the symptom merry-go-round and where she stops....nobody knows!!!

For me, the most difficult thing about having fibromyalgia is the unknown. You really don't know what will be affected next-your arms, your legs, your whole body. You can't really plan anything, because on the day of whatever it is you want to do, you could wake up with a really bad flare-up and not be able to do anything!  Then when you call to cancel, your friends or family think it's something personal.  No matter how much you explain it's not them and you are NOT antisocial, they just don't seem to get it. There really is no set of words you can use to make them understand. What I figure is, if the person thinks you are important enough to TRY and understand your position and accepts you for who you are, great.  If not, they really aren't good friend material anyway.  And if it turns out to be family, then that's really sad that they can't take the time to investigate about fibro and what you are going through.  In the years since I've been diagnosed, I've run into many types of scenarios.  Especially with friends and my boss at the hospital. I've lost a few friends and many jobs due to the fibro and while it wasn't really my fault, it still hurts like hell that how people in the MEDICAL field could shun me for having to go home sick or not being able to come in for a shift. What the killer was when I did go into work and one of my co-workers would be ill, they would get entirely different reaction to their situation.  "Oh, you should go home! You are sick!" I would get so irritated....why is THEIR illness more important than mine?  Ughhhhhh.....how I remember those days when I was working. Now that I can't work at all and I can't seem to convince Social Security of that fact, I have all the time in the world to remember those old feelings I would get over preferential treatment handed out at my work place. I was never the preferred one!!

Fibro is really something else, I tell ya. Just when you think you have a handle on it, the handle breaks.  I don't remember when I was in remission last from the fibro. The RA we have a good handle on with the Arava that I take for it, and Celebrex. I started on Savella last November and it took 8-9 weeks to totally kick in. It's a medication newly released for the treatment of fibromyalgia. I was so excited! NO medication had been "officially" listed for fibro, so this is a milestone.  It regulates two neurotransmitters in the brain: seritonin and norephinephrine. I began taking it and like most everyone else, you think you should get an immediate response. I continued to take it and felt nothing different. Just right when I was going to stop, my rheumatologist convinced me to continue it for two more weeks. He was so emphatic about it, I wondered if he held stock in it or something! I did what he said and continued it for two more weeks. My insurance wouldn't cover it, so he'd been giving me dozens of free samples.

Finally, at about the 9th week, I felt better. A little more energy. I slept better, deeper. In fact, my husband said I turned into quite the sleep "talker." I'd have whole conversations in my sleep! When I told the rheumy that, he said it was normal. And normal to have the vivid dreams I'd been having. It also raised my blood pressure quite significantly, so my blood pressure meds needed adjusting, but after that, it returned to its baseline.
Because the insurance wouldn't pay for it, the doc wrote a letter to them and within the week, I kid you not, I had the medication all paid for by my insurance! I don't know what he said, but I like it!  So I've been taking both Savella and Paxil for the fibro and some residual depression I have over my mom's death almost two years ago. I haven't had a problem with taking them both and am closely monitored.

I think I started to feel bad again because of many stressors in my life. My dad was acting up in Michigan and had a nervous breakdown and had to be taken to the VA hospital psych ward, but then was released (I think he just walked out as he was there under voluntary status after the initial 72 hour hold).  He told me he was reviewed by a panel of 20 doctors who thought that after 40 years of abusing his medications, he's all better after one week of treatment!  Oh, come on!  And the moon is made of swiss cheese!  I lectured him, told him this was his last option, as his sister can't allow him in her home anymore. Plus, he had punched holes in her wall and grabbed her arm when she wanted to leave.  She was rightfully afraid of him. So was I.  I still am, knowing what he is capable of when he can't get his drugs.  Frankie and I just can't deal with that anymore. We finally have a relationship and I'm no longer pestered by my dad wanting more and more of my pain pills.  I miss him and love him, sure. But that is where the line is drawn.

My dad never did stay in the VA rehab program. He went to a few sessions and now is staying with old family friends. I hear he is looking for an apartment for seniors and actually found one with a rent he can afford. He filed an application and I believe he moves in soon. Of course, he has no furniture, but he can worry about that. I have enough of my plate.

My other worries are of course, my swollen feet. But I'll find out if anything is up with my heart on June 11th. I figure it's nothing too bad or they would see me sooner, right?  I haven't heard a thing about the sleep studies yet.  And then my sweet, dear hubby. Having to go through this cancer crap again. I feel so badly for him. But we will get through this together.  The surgeon has his test planned for this coming Friday to look down into his stomach and see what the "shadow" is that showed on the cat scan he had last week.  He'll get the PET scan tomorrow.  And probably surgery next week or the following.  I'm glad they are moving fast...get rid of it as soon as possible!!!!

Well, my dear friends, my eyes are blurry and weary and the "fibro fog" is setting in fast. I can't remember what I wrote here, so please forgive me if I've repeated myself or gone off into the twilight zone. Just beam me back! I hope and pray for a better day tomorrow.
I hope you all are well.

Until next post,
Missy

Starting Over Again

Thank you so very much to all of you that read my first post and gave me such good feedback. I really appreciate it! I've added an email subscription link to the side box on the blog for those of you that wish to receive email updates of when I post. You can also "follow" my blog with Google Friends-that link is in the side box, also. 

I'm so happy that you didn't think my first entry was boring. :0) I was so afraid that I'd gone on and on with my story and that can get stale after awhile. I promise not to bore you! But let me know if I do!  I LOVE writing, I always have. I have a stuttering problem since I was a young child. It tortured me in high school. I didn't have many friends and the friends I did have weren't very close to me. I mostly stayed to myself and wrote poems at lunch out in the school hallway.  You know how brutal kids can be, I got my fair share of teasing. I wrote over 200 poems during my high school years. My mother gave me a gift for my birthday of my poems, typed by her, placed in a beautiful binder. Her hands were not good, the arthritis really took a toll on her poor body. She had to quit her job as a 911 dispatcher because she couldn't keep up with the typing that was required of her. So her gift to me is even more precious, because I know the pain she must have gone through to do it for me.  I hope I have it still, it probably is in the stuff we had to leave behind in storage in San Antonio. I was in such shock mode after my mom died, I didn't have a clue what I was doing or packing away. I don't even remember packing, to tell you the truth.  When we got to my in-laws in Phoenix, I had all my mom's clothes and only one or two shirts of mine. So I'm wearing her clothes, which in a lot of ways is comforting to me. Almost like having her near me again. I hope that doesn't sound too corny.  To this day, our stuff is still there as we haven't had the money to get a moving truck and have it shipped back here to Phoenix. We pay over $120 dollars a month to keep it in storage. Every time we try to save, disaster strikes. Our van got repossessed shortly after arriving in Phoenix and we had to file for bankruptcy because the phone kept ringing off the hook of all the bill collectors calling and wanting their money right now. We owed so much, the ONLY option we had at that point was to file for bankruptcy. It sure did stop the phone calls, for that I am grateful. I'd had to live to be 150 years old in order to pay off all we owed. My mom and I were also emotional shoppers, too, in addition to emotional eating.

When we finally do get our stuff back from San Antonio, it's going to be so hard going through mom's things. All her mystery books, cookbooks, Precious Moments collectibles, her M&M canister set I got her for Mother's Day, her purses. God, she loved her purses. And her red reclining rocking chair.  I will cherish each and every item.

I don't have to say how much I love my mom. I'm sure it shines through me for all to see at first glance. When she died, it was like my world had been replaced with some alien form that I couldn't and didn't want to accept! She couldn't be gone forever! No! I couldn't get used to the fact that I would never talk with her, laugh with her, hug her again. She was my best friend. People often thought we were sisters....I don't know if that is a good or bad thing! Either she looked young or I looked old! We'll go with the first one.  All though these days, as I loom closer to my 40th birthday in June, I look & feel like I'm 100 years old.  Life has done a number on me & my husband!!

My fibromyalgia was absolutely HORRIBLE that first year(2008-09) after my mom died. We were adapting well to living with my in-laws. Sure, we had our differences, but we worked them out. The real root of the problem was my dad. I love my dad, I truly do. He's a good man when he wants to be. It's just that he hides that and uses his prescription meds to ease his pain. I keep telling him NO amount of anything will ease the pain of losing Mom.  I tried to get him to go to a grief support group and we did go a few times, but he kept falling asleep and snoring that I was too embarrassed to go back!  I wish he would have listened to the group leader, as he was an alcoholic after his son was killed in a motorcycle accident. The leader said it was a difficult road for him to get back on the wagon, so to speak, but he did with the Lord's help. He tried to talk to Dad, but he wasn't receptive at that time.

My father continued to abuse his medications and didn't get along very well with my in-laws. I got so frustrated with him! We would be homeless if it weren't for Frankie's parents! He should be grateful our butts weren't out on some street corner!  He got in the middle of my marriage by always being in the middle of Frankie and I. Dad would be in my bedroom, watching TV all day and sometimes all night. Frankie and I were never alone, it seemed. We couldn't even go out to eat, we'd have to take him or he'd throw a fit. I'm a peace maker, so hate making waves that I did what I could to prevent a problem. I tried so hard I almost put myself into a coma. My dad was expecting me to take Mom's place and I can't. I felt so miserable, I couldn't eat OR sleep. I lost 100 pounds right off the bat (I was REALLY big; I'm so embarrassed to admit!) and my fibro was playing a number on me. I couldn't get out of bed for that whole year for longer than an hour, it seemed. I felt like hell...headaches, body aches, mouth sores, stiffness in my joints...all my diseases ganged up on me and made one big mess.  My mother-in-law was at her wit's end with my dad, the final straw being him going through her purse looking for the car keys so he could go get his drugs. I just knew we'd all get kicked out for sure!  I tried to keep everything together, to have it all fall apart around my ankles. I felt like a failure. One big, whopping failure!

Then my dear dad came up with a plan. He wanted to go live with his sister, Shelly, in Michigan for awhile. Michigan is where I originally came from. Most of my dad's relatives are still there.I knew he would be in good hands there, even though Dad's side of the family are wacko's with a capital W!! I could tell you story after story of their antics, but I really don't think there's enough words to adequately describe them. You'd have to see them to believe it, and even then, you wouldn't believe it!

The day my dad took off for Michigan (May 13, 2009) was almost like a rebirth for me. A huge weight was lifted from my shoulders. I was NO longer responsible for my father's actions. He'd have to grow up and take care of himself!  If I had to, then he had to! Mom spoiled us rotten by doing everything for us (cooking, cleaning, shopping when she could, driving me to work and back, the list goes on and on), but she's gone and now we have to do things ourselves. We are responsible for ONLY our OWN actions. It's taken me until now to finally really believe that. I felt so guilty and bad for abandoning my father, but he was slowly killing me by putting too much pressure on me.  I loved the fact that I can now store my medications in the medicine cabinet instead of a safe that required both a combination and a key.  I love the fact that I don't have him following me around and harassing me for my pain pills. No more temper tantrums or throwing things around my in-laws beautiful house. No more tension in the air so thick, a knife could cut it!  I feel free!

Unfortunately, my fibro didn't bounce back so quickly. I got a huge blood clot the entire length of my leg July 2009. I was in the hospital for five days for that. Then, my lower back gave way and to this day, I am in extreme pain from 3 bulging discs I have in the lower back. They are compressing against my nerve root exiting both legs. I had a MRI in October of 2009 that showed that and also severe sciatica. I have burning pain that radiates and shoots down both legs. I can't stand for more than 5 minutes and I can sit for short periods of time. I can only lay on my back to sleep, if I roll to either side I get severe pain. I'm on 23 medications a day now, counting my 90mg of MS Contin and 30mg MSIR for breakthrough pain, which I have frequently. I'm supposed to have surgery to correct the bulging discs, but can't have it due to I'm a poor surgical risk because of my weight. Here's the funny thing: the neurosurgeon said I should have the stomach by-pass surgery. Wouldn't I be a poor risk for that, too? I asked him that and he didn't have an answer for it.

So, I went to a pain clinic which advised me to have cortisone shots into my back to see if that would help. I was game at this point. Gone was my apprehension over needles (I know, I know...I'm a nurse and afraid of needles. But understand-I don't have a fear giving a shot to ANYONE ELSE but me!! LOL!), the pain was too bad to not try everything I could. So I went in for the shots in February of 2010 and ever since then, my ankles & legs have been swollen. I don't have a clue why, neither does my doctor know why this is happening.  I'm on 40mg of Lasix a day and I still have "elephant legs"!!!!  Soooo, now I'm seeing a cardiologist who has recommended heart tests to see if its a circulation problem. So this Thursday I'm going to have a stress test (the chemical one, thank you very much!), cardiac ultrasound and ultrasound of my legs. He also recommended a sleep study, which I have yet to hear when I'm having that.  And then, as if we didn't have enough on our plate, my husband has a new growth in his small intestine that his oncologist fears is cancer regrowth. He might be out of remission after 7 years! If it is cancer grown again, we are hoping that the surgeon will just take it out and be done with it. If he has multiple areas of new growths, however, he will have to be started on the second line treatment for his GIST (gastro-intestinal stromal tumor) which involves a medication called Sutent. He sees the surgeon on Friday, right after my stress test! I tell you, Frankie and I have sure had our share of rough waters! But we have stood by each other through thick and thin and I'm so happy I have the honor of knowing and loving him. He's been there for me in my darkest hours after the death of my dear mom and now with all my medical issues. And I will be there for him through his medical issues. That is what marriage is all about-being there for each other and knowing what they need even before they ask for it.

I'll save my story about my on-going fight with Social Security for disability for my next post. My hands are growing weary, as is my eyesight. And I'm exhausted. I'm in another fibro flare with my leg muscles cramping every five minutes. I've got real bad fibro "fog"....I hate that as I can't remember anything when I'm in that state! But I'm sure my fibro buddies know what that is all about!!!

I hope you all are happy and well.
Until next post, bon voyage!!! I'm cruisin' right for my bed......LOL.....

FibromyWHAT?

Hello! I'm very new to this blogging thing, so I'm just going to write in it as if it were a journal or diary. I think the concept of blogging is brilliant. It's an excellent way to share your thoughts and feelings with the world, all in one place! I've wanted to blog for a long time, but I didn't know how to...until I found the blogger on my Google homepage. Extremely easy to set up...so I recommend it to all who want to start blogging themselves but don't know how to go about it.

OK...now that I've done my sales pitch for blogging (LOL!), let me start out my first entry by saying this:

I HATE FIBROMYALGIA!!!

There, I feel so much better now getting that off my chest.  I've had the blasted illness for 14 years now. I was diagnosed in December of 1996, just one month after my husband and I were married.  I kept coming down with what I thought at the time was the flu. You know the symptoms...generalized body aches, extreme fatigue, but then I started having other symptoms NOT associated with the flu, such as sensitivity to hot/cold, intermittent diarrhea/constipation and the aches were no longer generalized, but more local to certain areas such as my shins, lower back, chest, shoulder areas and I kept getting headaches, forgetting things and feeling like I was in a "fog", too.  I had such extreme exhaustion that I couldn't work very well as a floor nurse for 12 hours, no less!  I had to keep calling in sick.  That's when my husband made an appointment with his doctor (I had just moved to the Phoenix area and had no doctor there yet) to have a check-up. After canceling the appointment twice, (I had a thing about going to doctors back then...such as I HATED to go to them!) I finally did go and have the examination.  The doctor listened to my story, and then started pressing me in the areas that killed me the most. Then he said, "You have fibromyalgia."  FibromyWHAT? Here I was a nurse and even I didn't know what that is. I had never heard of it.  Oh, how I wish I could have kept it that way!  I did some research, which yielded not too much about this mystery illness. The doctor put me on Elavil and sent me on my merry way.

What I found out in my research was that fibromyalgia is a condition that affects the muscles and sometimes joints. It causes widespread pain (but NO damage is caused to the areas) that alternates its sites around the body. One minute it's in your right leg, then the next it has jumped to the left elbow. Researchers believe it has something to do with an imbalance of chemicals in the brain called norepinephrine and seratonin. They both balance your body by regulating your sleep, for one thing. With fibro, you don't sleep too well (because of the widespread pain!), so your muscles can't regenerate like they should after a long, hard day of use. So you wake up feeling like total crap. And then comes the exhaustion. I'm not talking about being "a little tired." I'm talking about you feel like you've been run over by a truck 3 times and you are so very tired you can't get up. That's the best way I know how to describe it.  Sounds fun, huh?

I took the Elavil religiously for the next four years, even though the side effects were one right after the other. Drowsiness, daytime "hang-over", dry mouth, constipation, weight gain (which I definitely didn't need!), to name a very few.  I wasn't used to taking medications, except the occasional aspirin, and now I had a pill I took at night and the doctor also prescribed Flexeril for the muscle spasms in my lower back. The pain was always worse there for some reason.  Anyway, I was going my merry way (my husband and I at that time moved to Yuma so we could combine expenses with my parents and live together) and then it quit working. I went back to the doctor (my doctor I had when lived in Yuma BEFORE I was married) and he referred me to a rheumatologist, who then stopped the Elavil and put me on Zoloft.  I liked the Zoloft a whole lot more than the Elavil, I had so fewer side effects than when I was taking Elavil. For one thing, the daytime "hangover" resolved itself and I could work a lot better on the Zoloft.  So I thought I was doing pretty good. I could work again, I was sleeping better and the pains were a lot less.  My husband was adapting well to life in Yuma, as he lived in Phoenix with his parents since he was 11 years old.  It was a lot easier for us financially, too, sharing expenses and pooling our checks together with my mom's. My dad wasn't working, hadn't worked since I was 13 years old. I'm not exactly sure why. My mom had been trying to get him to work, but he'd look for a job, they would turn him down and he lost his self esteem, I guess.  My husband found a great job as a mail clerk for the City of Yuma. Yep, life was good back then!!

My mom and I shared rheumatologists since she was going to one at Scripps Clinic in La Jolla, CA. My mom had lupus and rheumatoid arthritis (RA) for years and I really liked her doctor, Dr. Schulman. She was compassionate and didn't berate us about our weight like other doctors did. My mom and I were "hefty" gals, if you get the picture, and the rheumy in Phoenix told me my sed rate was elevated because of my weight. Yeah, right! I get so tired of doctors telling me the obvious: I'm fat and need to lose weight. I KNOW that, but with the pain and fatigue, who can exercise?  I had lost over 100 pounds taking Phentermine a few years back, but then had to stop the drug because of the Phen-Phen scare and I regained all my weight, plus some.  I'm a very emotional eater and so was my mom. When we were together, which was a lot, donuts beware! We could eat a whole dozen in one sitting!!!  I know you are thinking my profile pic I chose for this blog shows me not looking too bad, but I am too embarrassed to put up one how I look NOW.  We had to add prednisone to my medication list due to in 2004, I was diagnosed with rheumatoid arthritis. I was so incredibly stiff, I could barely move. The prednisone, though it was my "miracle" drug and I could move so much easier, didn't come without its own bag of evils.  I developed the "moon face", gained weight, increased appetite, leg swelling...to name just a few. My mom had been on prednisone for over 10 years at that time and had all the effects named previously. She always remarked that her head looked like a bowling ball...only thing missing were the finger holes! I know what she means!!  My mom had such a great, sarcastic sense of humor.  She had such a positive attitude about her illness, this coming from reading in a library book about Lupus saying the life span of those with it is just FIVE years, it boggled my mind to think she could still stay positive.  Well, she beat those five years and lived until one day past her 60th birthday. She died July 8, 2008 from what the doctors believe was Lupus induced kidney failure.  It came on so suddenly. My mom and I were in San Antonio, Texas for me to start working at Northeast Methodist Hospital and then the guys would come when we found an apartment.  Well, we never could get that apartment because my mom fell in the parking lot of a Walmart and dislocated her artificial hip (she had bilateral hip and one knee replacement due to osteoarthritis) and had to have it re-set. She did fine for one more week, then on July 7th, her birthday, she started acting strange. I couldn't keep her awake for more than 5 minutes, she hurt all over and she was having conversations with her father, who had died 15 years ago.  I called an ambulance and they took her, to all places, the same hospital I was going to work at.  They treated her very well and did everything they could, but her potassium was so high it kept stopping her heart and she was on a respirator.  I know she wouldn't have wanted that, so I did the hardest thing I've ever done in my whole life and that was to tell them to stop CPR as she only had 1 percent survival rate. I know my mom well enough that she would come back and haunt me if I let her be a "vegetable" as she called it.  So that was that. My grandma (mom's mom) came from College Station, Texas, to be with me and help me wrap up loose ends.

I rode back to Tucson alone, (we had moved there almost one year earlier for another one of my jobs at Tucson Medical Center) and I used that time to reflect over my mom's life, learn from her life lessons and try to figure the HELL out of what happened and how we were going to survive without her. She was the glue that held our families together.  Without that glue, we all went our own ways. My dad refused to take suggestions from my husband and me, he wouldn't help us pack up the U-Haul for the move to San Antonio (I thought Mom would have wanted us to continue with our plans) and he kept getting high on his prescription medications. My dad has a LONG standing prescription drug problem and now with my mom gone and not able to whip his butt into shape, he went willy nilly on his prescriptions and even took some of mine and my husband's!  My husband is taking Vicodin for his bone/joint pain due to the medication he is taking for his rare GIST tumor in his abdomen. It's inoperable due to its location over vital blood vessels, so this medication (called Gleevec) is saving his life. He is now in remission and has been for the past 7 years.

We "moved" to San Antonio, if you can call it that. We lived at the Super 8 Motel right by the hospital my mom died at.  I continued the orientation there, but when I went up to the unit I'd be working on, I had such a panic attack they sent me home (or back to the motel!).  Fibromyalgia feeds off of stress, so needless to say, I went into the WORST flare-up of my life. My life was falling apart. My mom died, I can't work due to the flare-up and my dad kept taking my pain pills. He didn't respect my husband as a part of our "team." My dad was KING and that was that. I honestly didn't know how we could continue on like this.

We didn't continue on in San Antonio. We were flat broke, I lost my job at Northeast and my husband and I were up to debt to the very tops of our heads. No credit cards, no gas cards, no nothing. Luckily, my husband's parents were very gracious and not only opened their home to us, but also paid for a lot of our gas and motel rooms while we were traveling to Phoenix!  They literally saved our lives, for without them, we would be homeless.  So their home became our home until we get back on our feet.

I'll end my first blog entry on that note. I hope you enjoyed reading this and it wasn't too boring. I just wanted to fill you in a little about who I am and what fibromyalgia is.  Look for my next blog entry soon.  :0)