Friday, July 30, 2010

NIGHTMARE

If I had only one word I could use to sum up the last two days, it would definitely be NIGHTMARE.  What should have been the happiest day (or one of them, at least!) of our life has turned into one living nightmare.  My husband was released from the hospital July 27th after a one month plus hospital stay after having surgery to remove an arterio-venous malformation in his intestine.  As you all know, he ran into many complications, hence the lengthy hospital stay.  Well, on the day of his release, his blood pressure was very low. I'm talking in the toilet low. The nurse had him lay, sit and stand while she took various blood pressures and the good news was there wasn't too much of a change when he changed positions. The bad news remained that his pressure just was too low.  The nurse stated she would hold his Lopressor (a beta-blocker for the heart that lowers pulse and blood pressure) and see what happens.  He was placed on it in the first place because he has chronic atrial fibrillation and was taking Atenolol at home, but they changed it to this Lopressor because his heart rate during hospitalization was in the 130's. Normal is 60-100 for adults.  His blood pressure range was 80's/40's and normal for adults is 130/80.  So you can see where I was very worried over his numbers.  But, the hospital wasn't too concerned and sent him home anyway. I just thought we'd pump him full of liquids, feed him well and hold any kind of blood pressure medication.  I don't care that his discharge instructions said to take them!!

He was OK that night, and slept most of the night.  I couldn't sleep, I was too busy worrying about my husband.  He's such a trooper, I've been taking his blood pressure so much you can see the cuff indentation in his wrist...I have one of those units that fits on your wrist and takes the pressure that way. Very nice unit.  The following day, the 28th, started out with a bang and ended that way, too.  My husband had taken his Gleevec (cancer med) by mistake on an empty stomach so a few hours later, he's in the bathroom praying to the porcelin god!  He threw up so much, I think it was coming clear down from his toes.  He vomited about three separate times and then that stopped in the afternoon.  Whew, we thought, that is over. No more taking the Gleevec on an empty stomach! He just was confused, I think, and fatigued after being in the hospital for so long.  So I'm "helping" him with dispensing his medications for awhile until he gets back to "normal."  He knew better than to take that Gleevec on an empty stomach, he's only been taking it the past 7 years!

We get through the early evening OK and then BAM! He starts shaking and having severe chills. I check his temp and it's 101.4.  He also was draining quite a bit from his JP drain in his abdomen.  The area didn't look infected or feel warm.  This temp had to be coming from somewhere!  And then his BP got really low again.  My mother-in-law and I were up all night with him, stuffing him full of gatorade (which he hates but needed because of the electrolytes), sandwiches, water, milk, soda and anything we could think of to help get his blood pressure up and circulating inside his body.  By 10am this morning, his blood pressure was 71/45 and we had done all we could.  The ibuprofen I gave him for his fever worked and his temp was 97.3.  It was hospital time, though, with that blood pressure.  So I packaged everything up-my blue bag that I had received from the hospital when Frankie was very first admitted because I was his PAL, which is a program where patients can choose one person to act as his liason and stay with him for as long as needed to comfort him. I even received a pin and a discount in the cafe and cafeteria in the hospital.  Anyway, I put my book in there, a few sandwiches and drinks for us as you just never know how long you will be sitting there!  I've been to a lot of ER's where you wait a good four hours to even be seen!  So I came prepared!

We get down to the ER and everyone was so incredibly sweet there. We had only a 10 to 15 minute wait and he was taken back to a room and they started an IV to give him fluids and he also had labs and blood and urine cultures taken.  He also had an X-ray of his stomach and pelvis because last night, he was so dizzy, he fell in our carpeted hallway and got a nasty abrasion to his left arm. No other injuries that we could see outwardly, anyway.  And he didn't hurt his head with the fall. I did tell the doctor about the fall, though, so she could examine my hubby more thoroughly, especially his head.  But lo and behold, all the tests and X-rays came back as normal and they were shipping him home with a prescription for an antibiotic (Augmentin) and with the instructions to get a hold of his surgeon tomorrow.  His BP when we left was a whopping 93/47.  I guess that's the new norm now as I couldn't get anyone else excited about it except for me and my husband!

When we were going to the car, the wind really started to whip up and we were getting some major monsoon activity going on.  I DID pray for rain, but not NOW! I wanted to be at home when the skies opened up and water poured down from the clouds above!  But no, we were pounded with rain all the way to the pharmacy and then to home.  Frankie said he was feeling better and ate a good meal of soup and English muffins  with raisons. Then he went and laid on the bed for awhile until it was his turn to use the computer (we share a desktop).  He was doing OK until just a little bit ago when he came into the bedroom just shaking again. This time he had no high temp, it was 97.8. I gave him some ibuprofen just in case it was trying to creep up.  I wasn't crazy enough to do a BP....I just couldn't bear anymore bad news at this point!!!!

I am just so frazzled and frustrated and aggravated. Why us all the time? Why can't we have a normal life where you go in for surgery and come out the same week with NO complications?  My mom was like this, too. All her surgeries ended in post-op infections that led to further surgeries and extreme pain.  Just once....just once I'd like NO complications after EVERYTHING we do!!!  ARGHHHHHHHHHH!

There, I feel better with getting that off my chest. I feel like crap myself. I'm so exhausted that I'm BEYOND sleep. I feel like I've got my candle lit at both ends that are fast approaching the middle of the candle!!  I find myself being short-tempered and irritable at anything and everybody.  My joints are on fire and my muscles are stretched beyond their limits.  I've had to take more medication than I'd like just to get at least a few hours of sleep. I just don't know what to do anymore and that is such a helpless feeling!!  So I continue praying to God that He will help us all through this rough patch.

Frankie is still sleeping, so I guess that's a good sign. No more shaking, so the ibuprofen must have helped.  I started making all his post-op appointments, August is slowly booking up and we haven't even ended July yet!  Thank God we have a car now. I remember this time LAST year when we had no car and had to shoot across town to our appointments in a taxi paid for by our health insurance.  I'm grateful, of course, they covered that.  But nothing is better than having your own set of wheels and we are so in love with the car we selected. My husband found it off of Craig's list and just at the right time.  It's a 2000 Toyota Camry, but it was taken such good care of that it looks and runs brand new.  It's a comfortable riding car and you don't feel every bump in the road.  I like that, as I don't like cars that you can feel every joint-jabbing bump in the road!!

Okay, I'm gonna end this post and go check on Frankie.  Thank you for letting me rant and rave for awhile.  It did help and I feel a lot better, just getting my feelings out on paper.  I think that's why I love writing so much. I'll end this post with another one of my poems written long ago. Hope you enjoy!  Have a blessed weekend!!

Until next post,
Missy

Along The Road

Floating so freely
With not a care
Across the road and it's gone
Not paying attention to what's fair.
It doesn't matter
It just leaves
Not turning to hear senseless chatter.
It makes not one friend
For it never stays
It had no beginning so how can it have an end?
It moves from place to place,
A drifter-and a proud one
An art done well,
An art done with grace.
Floating so freely, not carrying one load-
It loves life, for it doesn't
Have to live it.
It drifts along,
This leaf hurrying along the road.

Wednesday, July 28, 2010

Frankie Is HOME!!!

Oh, my word....I NEVER thought I'd live to see Frankie come back home!!  I thought he was going to take up permanent residence at John C. Lincoln Hospital, room 415!!  But yesterday was the BEST day of both of our lives when I could wheel the car around to the loading zone and pick up my husband (he was patiently waiting for me in a wheelchair by the door) and take him home.  Well, we stopped by the pharmacy, first.  But I'll get into that later. Let me back up a little since things happened so fast, I didn't get a chance to blog about it before.  He went from pureed food to regular to out the door within a space of a day!!  And I'd got photographic evidence of Frankie with REAL food, too.  Wanna see? Here we go....the first picture is Frankie with his pureed lunch and the second is of Frankie with his regular dinner of spaghetti and meatballs.

 Doesn't he look great without the NG tube hanging out of his nose?  He said he feels like a real person again!  Albeit tired, but real nonetheless.  This ordeal has made ALL of us tired.  But no more having to go to the hospital everyday, circling the parking lot like a shark, waiting for people to leave and me sucking up the spot. Even the handicapped (which is the whole front lot!) would be busy. But I got it down to a science that if I go between 8am to 10am and 12pm-on I had a really good chance of getting a space right up front.  Between 10am and 12pm, FORGET IT!  And I did love those spots up front, especially since I had to wrangle with my walker everyday, getting it out of the trunk and ready to roll.  See, that always was my hubby's job, but I didn't have him there to help. :(  I tried once going in without the walker and I almost fell three times and my legs felt really weak. So I used the walker from then on.  I'll say it again: I HATE FIBRO!!  It sure does put a crimp in things, doesn't it?

Anyway, Frankie sure did enjoy his meal. Now I know he's been in the hospital too long....he loves hospital food!!!  Actually, John C. Lincoln has great food. Trust me, my mother-in-law and I were regulars at the Kettle Hut Cafe on the first floor. I've got their menu memorized at this point!  Frankie tolerated all the food with no problems. So having that hematoma drain in really turned things around. The hematoma itself is what was blocking the intestine, so nothing could go past it.  Leave it to my husband to manufacture this kind of stuff!!   Once the docs heard he was tolerating food OK, that's when things went really fast and they started the process of getting him home. He will need home health care due to still having the abdominal drain (he will have that removed when he sees the surgeon in the office next week) and it requires daily irrigating and emptying. Which I can do myself, but the insurance is paying for home health, so who am I to complain and step on anyone's "turf"?  I am having to empty it more than once a day, though, as it still is draining pretty good.  Probably with all the movement and walking now is what is getting it to drain more than in the hospital.

Frankie didn't get discharged until about 4pm yesterday. I got to the hospital at 8am that morning as I didn't want to miss the doctors and anything else that might happen.  Social services got everything set up the home health, we should be seeing the nurse this morning.  Then they converted the drain over to a Jackson-Pratt drain which is much easier to take care of than the one he had in the hospital!  It looks like a little hand grenade and you squeeze the bulb and close the tab on top and it creates a constant suction. Then when the bulb is full of fluid, you empty it, record it and squeeze it in again to create the constant suction.  Then, we had the teaching part of the drain, he can go home on regular food, and no restrictions of any kind.  We were on our way, then, out the door and to the pharmacy.  That is where we ran into a problem.  The doctor wrote a prescription for his pain medication but forgot to put Frankie's name on it and due to their rules and regulations (I'll tell ya where they can stick those!!!) they couldn't accept it without his name. So we had to go all the way BACK to the hospital and they put one of his name stickers on the prescription and we were on our way BACK to the pharmacy.  This time they filled it and we were on our way home!

It felt really good to have him in bed with me, right by my side. I'd taken that for granted until he was gone for a month and I had the bed alone.  What a downer that was!  So I'll never take that for granted again!!  My fibro is horrible still. It doesn't help that the humidity is around 50%, which is WAY higher than we are used to.  They keep saying rain is in the forcast, so hopefully it will rain away the humidity.  I doubt it...this is Arizona we're talking about...the land of sun 360 days of the year!

I'm taking it really easy, myself. I woke up this morning with a stitch in my side and my legs felt like I'd had surgery on them during the night without any anesetic!  Or like someone was banging on them all night.  I just took my morning pills so hopefully those will kick in soon.  Speaking of pills, I just have to show you one of the cutest pics I got of Jack "helping" me put my medications in my pill container for the week.  He just has to be a part of everything!!

"GOT DRUGS?" Jackie does!!  He's such a good helper, don't you agree?  Whenever I put anything out, he has to lay on it.  He's such a cutie pie, I couldn't resist passing up this photo opportunity!!

Alright, that's it on my end of the world. Now we go to lots of follow-up appointments for Frankie. So the calendar will be filling up fast and we'll be shooting from one end of town to the next.  But I love traveling and we have the BEST car (Toyota Camry), so it's no problem. Just wish it were a tiny bit cooler....but you can't always have everything!!
Hope this post finds you all happy and well.
God bless you all and thank you for all your prayers and support. Frankie is greatly appreciative, too.  We love ya all!!

Until next post,
Missy

Sunday, July 25, 2010

GIMME FOOD!

Howdy, all!

Are you sitting down? Ready for some GREAT news? Frankie can eat again!! On Friday he had his NG tube clamped and they started him on clear liquids. Because he doesn't like fruit (but he'll consume sweet and sour chicken like it's going out of style or have oatmeal with raisins but yet he doesn't like fruit!) the clear liquid diet was NOT made with Frankie in mind.  They sent up cherry Jell-o, mango ice popcicle, apple juice, chicken broth and coffee. The only thing he liked was the chicken broth, but because he hadn't eaten in a month, it was too rich for him. So he had half of that and my mother-in-law made him some iced tea and he gluggled that down like a man just coming in from a 40 day trek out in the desert!

Yesterday (Saturday), they started him on full liquids since he did really well with keeping everything down from Friday. He had a little bit of nausea, but I think some of it is in his head since he hasn't had food in so long and the previous trials at it failed, his brain could be causing the nausea because its so used to feeling it! The brain is very mysterious!  So we got his mind onto other things - his pocket poker game- and he was OK.  He also gets nausea meds with his Morphine now.  We got him off the Dilaudid (Thank God!) and onto the Morphine.  I hope to wean him off of that before he comes home.  He can continue the same meds his pain specialist in Scottsdale has him on at home, they worked just fine!  He still is in significant pain in his legs still, even though he has been off the Gleevec for a month.  Maybe his pain is NOT from the Gleevec. Oh well, that investigation will have to come later. When Frankie gets out of the hospital, we are working on ME next. I want to start the process of getting that lap band so I can start losing weight to feel better and maybe I can work again.  Isn't THAT a novel thought?  I haven't worked in two years and I'll have to take a nursing refresher course if I don't work in five years. So I have three years to get in tip-top shape!!!  So Schranz Boot Camp, here I come!! LOL!!

Back to Frankie...according to the CT scan of Friday night, the hematoma in his abdomen has shrunk some, but not enough to remove the drain yet.  At least he will be getting rid of the NG tube. I'll take my camera and get a picture of this milestone.  I have all the pictures in a folder called "Frankie's Recovery."  I'll even get a picture of him eating dinner tonight; that will be a sight I haven't seen in some time!!!

Well, better get to the hospital to see my man.  I need to keep him motivated. Walk. Sit in the chair. Take a short nap. Repeat process.  No holds barred...we are sooo close to bringing Frankie home that I can taste it!!

Hope you all are happy and well and trying to stay cool.  We had a little reprieve from the heat on Friday when it rained so hard and cooled things down a little. Then the rain stopped and yesterday the heat returned in full force.  Hot and sticky....my favorite combination.....yeah, right! LOL!

Thank you all for your continued support, prayers and kind words.  My fibro is doing the same, I'm no worse for wear.  I still have the horrible leg cramps, but I think they will relax some now that I know Frankie is going to be OK and not require anymore surgery. I was so worried about that.  And maybe I can go back to sleeping better, but that may be when he gets home and is with me in the bed again.  I miss that!!  So keep everything crossed he comes home this coming week.  Wouldn't that be just absolutely fantastic??

Big, gentle hugs for everyone,
Until next post,
Missy

Thursday, July 22, 2010

Wet Stuff

Hello, everyone!!
Guess what?  We actually got the wet stuff today.....RAIN!!!  Yippeee!  I 
think I heard on the radio or TV that we hadn't had rain in 85 days. I believe it, too.  The desert is probably just sucking it down right now as we speak. Of course this rain had to happen as I was leaving the hospital tonight after visiting my husband. The black clouds were starting to roll in this evening, so unfortunately I had to cut my visit short with my husband. I hated to leave, but I hadn't driven in rain too awfully much and didn't want to be caught in a sudden down pour.  Come to find out, I was caught in it anyway on the freeway, but I survived!!!  Poor Flagstaff, though, has had its share of inclement weather recently.  Now they are battling with mudslides and severe storms over that part of the state.  


My hubby is doing about the same, maybe a bit more depressed. Today marks a month in the hospital. I'd be depressed, too!  He's been poked, prodded and stuck with every kind of tube or test imaginable and we still can't find out why his intestines are taking a long hibernation.  He still has more gastric output than we would like and the drain he had placed in his abdomen to drain the hematoma is still draining dark bloody fluid into the collection bag.  Poor guy- for him to take a walk, he has to call the nurse and she comes and unplugs him from the NG suction, then because they only have one size of PJ bottoms (x-large) he has to hold his pants up with one hand and steer the IV pole with the other hand. He makes quite the picture!!  Tonight, though, his dad brought in the PJ bottoms from home and he immediately changed into those and was happier.  


The doctors are thinking about taking the drain out tomorrow or over the weekend and starting him again on clear liquids and see what happens. As they say, it's a "wait and see game."  Well, my husband (and we all) are tired of playing!!!!  That's all the Frankie news.  No talk of going home yet. Of course he still has some major things to work out first before even thinking about home and that is he has to be able to eat AND keep it down. That would be helpful!!!  We'll just see what this weekend brings. Hopefully it will be better than last weekend.  


I'm holding up OK. I've got a horrible rash on my butt from my TENS electrodes.  I sweat a lot and I think the electrodes and my sweat mixed to create a brilliant red, itchy and very irritated rash over where the electrodes were.  So I'm using lotion on that to soothe and heal it up.  I washed the area really good and then used this thick lotion for itchiness and irritation.  I had to place my electrodes up really high on my back and I have mixed feelings if it will work or not. But I can't put it on the rash, so I'll make due until it heals.  What else will happen to me?  Oh, yeah...my feet are so big and puffy, I can't even bend my toes.  So after I put a dot for a period at the last sentence of this post, I'm going to bed.  I'm so exhausted!!


As promised, I picked out a poem that I wrote as a creative writing assignment in high school my senior year.  My creative writing teacher, Mr. Holt, just LOVED it and it was published in the creative writing magazine that the school published once a year, I think.  I hope you like it!
  
Rain Song      

I.I always used to love rain
The steady beating like soft drums on the rooftop
I would look outside and see a spider
Clinging to my ripped screen.
I only saw him on rainy days.

II.I met Alex on a sunny day.
He wore a long-sleeved shirt and bugle boy pants
The black material hanging softly from his bulging muscles
He leaned against the landlord's rusted blue Toyota
And asked me my name.

III.Another sunny day.
Alex invited me back to his house
And we watched TV.
I don't even remember what was on
Some western, or maybe the "Twilight Zone".
The TV went fuzzy and Dave, Alex's friend, tried to fix it.
"Work, you worthless piece of shit!" He yelled,
Throwing the antenna across the room.
It landed behind his box of dirty magazines.

IV.The late afternoon sun sparkled on the waves like gold
Another beautiful day ending as Alex and I
Silently walked on the deserted beach.
We watched the sun drop lower and lower into the lake
Till it was out of sight.
We crossed the railroad tracks and I got the heel
Of my brand new sandals caught.
Alex and I tried to save it                              
But the heel was already broken.

V.First things I noticed when I walked outside
Were the clouds--big, gray and threatening.
Alex was restless that day.
We talked of nothing--just sat in his room
And watched the rain start,
It's pit-pat drumming softly on the roof.

VI.Still raining.
We stayed inside and hovered together for warmth.
Alex was silent
And I asked him what was wrong.
He looked at me with those brown eyes
And for a moment I thought he would tell me.
The moment passed.
"Nothing" he said.

VII.Next day, the rain was the hardest I'd ever seen,
Making mini lakes on the ground.
I stepped over them on my way to Alex's.
I got there and his friend Dave greeted me.
"Alex is gone".
"Where?"
"I don't know".

VIII.The rain blended into a light drizzle after awhile.
I sat in my room and waited.
Waited for what, I don't know.
Little droplets of rain splattered on the window.
I went to bed early.

IX.I hate rain                                          
The steady pounding is like loud drums at a disco.
I looked outside to find the spider clinging to my screen
On this dismal day,
On a day everything was wrong
The spider was gone too.

To Alejandro N. Ramos
1988


Alejandro was the Mexican guy I met in my junior year and I fell hard for him. I wrote a lot of poems about him during my senior year after he left me without even saying good bye.  Big jerk!!!  I'm soooo over him NOW!!  But looking back over these poems brings back a lot of memories for me and makes me think, boy, times were sure simple back then! When all I had to worry about was boys, instead of fibro and making sure I got enough sleep and I take my medications, Frankie's cancer, ect.  I'm sure we all feel like that when we think back to our childhood.  How simple things were way back when.


Have a good weekend, everybody.  I'll keep ya posted on what happens with Frankie.  Wish us luck and perhaps a miracle! We could sure use one about now!!


Big hugs,
Until next post,
Missy

Tuesday, July 20, 2010

A Draining Experience

Hello, friends!

Well, the weekend had its ups and downs with Frankie and his gastric drainage. On Saturday we were really happy that he had a significant drop in the amount only to return on Sunday and see that he had more than made up for it in the night.  The nurse explained that the tube wasn't all the way down into his stomach, so it couldn't get get all the drainage on the bottom of his stomach.  I should have known!  Anyway, he had another abdominal X-ray and CT scan on Monday (he's had enough of them he should be radioactive or glow in the dark by now!) and the nurse told us the preliminary report showed NO obstruction anymore.  He still has the hematoma, though, that showed up on previous X-rays and this is due to his recent surgery.  Frankie told us that he saw the doctor in the elevator on the way back up to his room after his CT scan and the doc said he would be placing a drain in the hematoma to get all the blood out of it and maybe that would also help the gastric drainage go down into his intestines like its supposed to.

I was really bummed out as I wanted to talk with the surgeon to get the full report myself.  I love my husband dearly, but he only gets bits and pieces of the conversation and doesn't ask very many questions.  I went early yesterday morning (Monday) to stake out a doctor from the surgery group and luckily one came in and answered some of my questions.  And she ordered the radiology examinations.  At least this time Frankie didn't have to drink the citrus contrast, as the nurse used a syringe and put it down his NG tube.  He hates ALL fruits (can you believe THAT?) and would just cringe to have to drink that contrast for his every 3 month CT scan!

Today, Tuesday, my mother-in-law and I visited Frankie in the afternoon and he had a wonderful surprise for us!  He actually POOPED!  Unfortunately, it gave him NO warning and he had quite a mess to be cleaned up by the staff, but things are starting to wake up and move right on down like they are supposed to.  Isn't it just sick that we should get so excited over that? Almost like we're potty training him and we would clap after he did "number two."  LOL!  So I think we FINALLY are turning a corner.  They are going to do a NG tube clamping again tomorrow and see how things go.

My aunt and uncle in Texas did something so sweet...they sent a beautiful plant and "Get Well" balloon for Frankie!  He was very pleased by it, as we were too.  Thank you so much, Aunt Penny & Uncle Jeff!!!  :0)

Frankie had the drain placed late this afternoon and when he returned to his room, he was half out of it due to the medications they gave him to relax him for the procedure.  I stayed for a while then decided to head home at dark.  I am just literally asleep on my feet.  And my feet have been giving me lots of problems with numbness, tingling, pins and needles and pain.  It feels so good to come home and get my feet up on my elevating pillow rest.  I have my TENS unit cranked up on high and I try to read my book, but I don't ever get very far and wake up two or three hours later with the light still on and the book on the floor.  So tonight, I'm gonna close this post and just go right to bed.  I'm exhausted!!!

Hope you all are well and happy.  Thank you so much for your continued love and support. I've received so many kind notes of wonderful thoughts, words and prayers.  I really appreciate each and every one of them.  So, from the bottom of my heart, thank you!!!  You all are the BEST!!!

All righty-roo!  Time to get my numb feet off to bed.  You guys and gals all have a blessed rest of the week and I'll be posting again soon.  I'll dig up another one of my poems to include in the post.  I hope you all enjoy that.  If not, please let me know.

Big, gentle hugs to all!
Until next post,
Missy

Saturday, July 17, 2010

Life Sucks!

Howdy, my good friends!

Don't ya just love with how I started this post? Life sucks ONLY when you have things that happen that you didn't plan on happening. Like my husband going in for a "routine" tumor removal three weeks and two days ago and he is STILL in the hospital!  And it doesn't look like he will be getting out any time soon. He still has a lot of gastric contents that his intestines just aren't processing at this time. The doctor today thinks that maybe something got "twisted" or kinked in his intestines during surgery, so that is why nothing is going any further than his stomach. So if he doesn't go down in the amount of gastric fluids he is putting out through the NG tube by Monday, then he will have more surgery to see what the problem is.  He's been putting out about 1800 cc's of gastric fluid a 12 hour shift.  That's too much, WAY too much, to have out this late in the game.  My sweetheart has done everything he can to help things along. He walked so much today that the hallways have tread marks on them....LOL!  We were thinking along the lines of when a horse has a twisted intestine you walk them around. Maybe it works in humans, too. Heck, who knows?  The walking certainly can't hurt.

They are limiting him to ONE cup of ice chips A DAY, so he gets like one or two chips several times in the day to spread them out.  He says his mouth is so dry, he can't stand it.  The poor guy is sucking on a wet wash cloth to keep his mouth and lips wet.  And he's gone through two chap sticks so far because his lips were getting all dry and crusty.  I just feel so badly for him. Nothing has gone as planned, as usual. It just seems like Frankie and I can't ever catch a break. We fix one problem, only to have two more waiting in the wings.  I just am praying really hard that the good Lord above will get us through this one. I'll worry about tomorrow next week! LOL!

It's getting harder and harder to say goodbye to him when I leave for the day. I just want to stuff him in my purse and sneak him out and take him home. Can I do that? No.....I can't take him home how he is now. He can't eat and is living off of IV nutrition through a PICC line. When I stop and think about it, he's been having problems with his bowels (severe constipation) and vomiting even before the surgery. We thought it was due to the narcotics that he takes for his leg pains, but maybe not.  So we need to have him "fixed" and if another surgery will do it, that's what we'll have to do.  But it rips my heart out to see the look in his eyes as I bend down to kiss him good night.  I'll touch his brow and he'll touch my cheek and we'll stay like that for awhile, just looking at each other, not wanting the moment to end. But it does end and I waddle with my walker down four floors and out into the humid, HOT AZ heat to our car alone.  This is where life sucks!

I came home tonight and used every last bit of energy I had to take a shower and write this blog post. My legs feel like cement and they are alternating between numbness and tingling to pins and needles and pain.  The muscles in both calves painfully constrict while I'm driving (of course!) and I even had to pull off the side of the road a few times until the spasm passed.  My fibro is taking this ordeal and running with it. No matter what I do, or use or take, the fibro is one step ahead to make my life even more miserable.  I hate having fibromyalgia. I wish I never heard the term. I wish I could bury my head in the sand and forget about life for awhile.  But I must remain strong for my husband as he needs me the most right now. And I will be there for him no matter how badly I hurt.  I took a little self portrait of myself as I felt I wasn't being fair posting pictures of me taken several years ago when I looked "normal."  Or, BEFORE PREDNISONE!  Since I've had to remain on 20mg a day of Prednisone, I have the distinctive "moon face" or "bowling ball head" as my mom lovingly called her own head. She said all she needed was the "finger holes."  She was on the same amount as me.  So, I guess I'll show you the real me, how I look today.  Due to the graphic nature of said photo, you might want to use parental guidance.....I'm not kidding. It's horrible! But it's me and you can see by the bags under my eyes how I'm handling all this.  So here we go......

Hopefully if I can have that lap-band procedure and lose a lot of weight, my Prednisone face will shrink some. Lord, let's hope so!!  But anyway, this is me.  I gotta accept that.  On to better things....

Jackie got his new summer 'do.  About three times a year I take him to the groomer for his bath and shaving. I have them shave all his fur off and he looks just adorable with a shaved body and the furry face. He looks like a "bobble head" sometimes!  But he stays cooler and his fur is a nightmare to try and keep brushed. For one thing, he HATES the brushing and won't stay still. And then it gets horribly matted because his fur is thick and bushy. So shaving is the way to go.  Here is a pic I took of him after his grooming. He looks a little grumpy because I woke him up out of one of his many naps that day.....

Isn't he just the cutest?  I'm telling ya, if you have a long haired cat and can't deal with his/her fur, then shaving is the way to go!!!  The groomer even gave Jack a flea bath because she said she found ONE flea on him.  How does a completely indoor cat get one flea? I don't know about that, but he did get the royal treatment at the groomers.

Well, that it's for now. I'll give you the full update on what happens with Frankie on Monday as soon as I know myself. I plan on getting down there at 7am and waiting for the surgeon to come in and see what we do next.  I love my husband dearly, but he is horrible at giving me details on what the doctors tell him. So I pop along with and that's what I plan on doing on Monday!!  Hope you all have a great weekend and hopefully that picture of me won't give you nightmares....LOL!!

Until next post,
Big hugs,
Missy

Thursday, July 15, 2010

Quick Sand

Howdy, friends!
The tests that Frankie had a few days ago show that he has a partial small intestinal obstruction.  The doctor yesterday explained that SOME of the stomach contents and contrast he's ingested are getting down into the small intestine, but a lot are still remaining in his stomach.  Too bad we can't get him some industrial strength drain-o or something! (LOL!)  He's had to have the NG tube replaced three times so far because they keep "coming out." The first time was in radiology - and remembering back to my nursing days, I'd send a patient down with a patent IV and they'd return to me with either it being clogged or out altogether!-and the other two times Frankie accidently dislodged it.  Or I THINK it was an accident! Frankie has been "out of it" the past two days due to them giving him Ativan. That really knocked him for a loop.  Who would have thought that he could take a pain med FOUR times the strength of Morphine and not have a problem and then take an anti-anxiety med like Ativan, the smallest dose, and have it affect him like it did!  Luckily the doctor discontinued it yesterday and I just got a call from my husband, the first one in two days, and he finally is starting to sound more like himself and not as foggy.

I feel so bad for the guy. He's depressed. I'm depressed. My mother-in-law is depressed. We all are! It's like we are walking in quick sand and the more we push to get through it, the more it sucks us down within.  I think they should name a wing after Frankie at the hospital.  I've been there so many times, the car could drive itself there now.  With how tired and worn out I've been, I think it HAS taken me there by itself...LOL!  The only "cure" for small intestinal obstruction is to walk, walk, walk and time to resolve itself.  So his mom and I are drill sargeants and when we get there, his feet are poundin' the pavement, so to speak. He needs LOTS of motivation and we have been pushing him all the way.  I think he was using the Ativan as a way to "escape" this world he's been plunged in. Can't say I blame him, but the Ativan made him so drowsy, he couldn't walk. And we can't have that. I want him home...preferably some time in my life time!

My fibro has been absolutely horrible. ALL my trigger points are triggering! There is not ONE part of me that doesn't either ache or throb. I've got this problem with my big toe on my right foot where it just throbs and is kind of red. It rubs against the other toe. I showed it to the doctor yesterday at my appointment (and I had to go alone, no hubby :( ) and she said it wasn't infected, so I'm just leaving my shoes off at the hospital and going around in just my socks.  I have a bundle of nerves on the top of the same foot that when the shoe hits that, it hurts like heck!  I even had to get a larger sized shoe to fit my big feet in due to the swelling that I still have and nobody knows how to get rid of.

I visited my favorite physical therapy store- Active Forever- www.activeforever.com and purchased a pillow for my neck that is absolutely wonderful. It's shaped like a horseshoe and craddles my neck and shoulders. I also got a body wrap that goes over my shoulders and you can have it either hot or cold - I chose cold as that helps when the temps are up to 115 degrees outside- no kidding about that, either, that is our high expected for today!  I don't really want some hot thing draped over my shoulders! But the cold feels sooooo good!  Check out the link above. They have all kinds of stuff for pain and fibromyalgia and all at reasonable prices.  They REALLY should give me commission, don't ya think?  That is also where my TENS machine came from and where I get my electrodes. One stop shopping! Gotta love it!  So now when I go to bed, it's a therapeutic experience- with my wedge pillow that goes under my legs and elevates them, my neck pillow and my ice packs.  When I wake up in the morning, my wedge pillow is usually to the side of me, my neck pillow stays properly in place and my ice packs on the floor!  So I do manage to toss a little bit in the night, which is probably why I wake up very stiff and have a lot of pain in my back and legs. I need to come up with some way to strap my legs to the pillow wedge to keep them from moving!!  LOL!

Alrighty, that is it from my corner of the world. To end this post, I've chosen another poem from my high school years poem archives. Hope you like it.

A Road Called Life

I have prepared forever,
As long as I can remember
For the road that is ahead of me.
I have been experienced
Through past experiences
And I have been
Through enough of life's ups and downs
To be able to handle the real thing.
I wake up today
And it is time.
I am no longer "too young,"
But a mature adult
That must travel down that road.
I stop momentarily before getting up.
Some don't make it down the road,
But I will try.
I smile and get ready
To walk on that road.
I am ready
And I walk to the door that leads out.
My hand on the knob,
I stop.
My feelings all surface now,
Pleading me to stop.
To stay in my safe place
To remain sheltered a little longer.
They are so strong
What if I fail?
What if I lose?
I can't answer these yet
Because experience hasn't taught me
The answers.
With my second wind,
I think again.
I will try my hardest
And if I fail
It won't be because I haven't tried.
With that strength,
I open the door.
Talking a deep breath,
I begin down a road called life
And it's scary as Hell.

Tuesday, July 13, 2010

Around And Around We Go....

Goodbye My Friend 
I watched you come with the beauty & grace,
As a young lion on new territory.
I knew you those early days when you knew not a soul.
I came into your life as you came into mine,
Adding something we both never felt before,
Adding new dimensions, new horizons, new love.
I felt your kiss in those early days
As you felt my embrace those last final hours
   we had together.
I don't know what you think now,
But I hope it is good--I hope you really loved me.
I hope you don't think I'm a thing of the past or
   that I will forget you.
Oh, in time, maybe the pain of losing you will fade,
But I'll never forget you.
When I look back now,
I realize I didn't say all I wanted to.
Maybe it's not really goodbye and maybe you'll be back.
But there's just one thing I must say just in
   case I never see you again.
"Adios, Amigos."  "Te diso, te amo." 

Howdy, friends!
As promised, I've included one of my poems from my collection of all original poems written by yours truly.  The poem above was about one of my very first loves in high school, a Mexican guy that my best friend and I met outside a grocery store in Michigan in August of 1988.  I really struck it off with this guy, which now is HYSTERICAL as I didn't know Spanish and his English wasn't too spiffy.  Makes me wonder what we ever talked about. We did a lot of hand gesturing, almost like he was deaf instead of Spanish speaking. I vowed then and there to learn Spanish, but for one reason or another, I never did. Not even when I was working in Yuma as a nurse did I learn it. And I could have definitely used it then!!!  Anyway, Alejandro was a thing of the past as when my senior year started that year, he and his buddies moved on and left me in the dust without even saying goodbye. I just went to this rented house one day and was greeted by one of his friends saying he went to Texas.  My first official heart break!  I wrote a lot of poems about Alejandro, as he WAS my first love.  I hope you enjoy the little poems I tack on my posts.

Okay, now present life awaits. Frankie is no better, I'm afraid to report.  He still is retaining A LOT of stomach contents, it just isn't going down into his small intestine the way it should. Yesterday he had a whole bunch of x-rays as part of a series called a "small bowel follow-through." They are looking for any kind of blockages by having him drink more yummy contrast and seeing how far it goes down into the small intestine.  We don't know the results of the test yet, but as soon as I do, I'll let everyone know.  His NG tube accidently came out in radiology and he had to have it replaced due to the high amount of stomach contents coming out of it yesterday. I don't know if you ever have had a NG tube inserted, but let me tell you, it is NOT fun. They gave him some Ativan first to help keep him calm during the insertion.  I just feel so badly for him!!!  If I could take any of this on myself for him, I would in a heartbeat.  After all, what's ONE more problem for me?  I just hate seeing him suffer so. There just has to be an end to this!  What turned into a simple tumor removal has evolved into a full-blown nightmare. I feel like we are on a merry-go-round we can never get off of!  I'm just feeling very desperate and depressed, as is Frankie.  He's been such a great patient and gets out walking several times a day now without too much prompting.  He still won't sit in the chair too long as it puts pressure on his abdominal incision, but a least he is walking and still passing gas.  So please pray for him that this whole nightmare will end soon.  I really appreciate it!  

I'm holding up OK. My mother-in-law and I are very tired as we both haven't been sleeping too well at night. My fibro is in flare-up and her RA is in flare-up. No doubt as to the reasons why!  But we keep on going, day after day after day. Frankie sure does appreciate our visits and we enjoy seeing him, since it's the ONLY thing we can do for him at this point.

My fibro is in full-blown flare-up and I've got all the symptoms I just love back: unrestful sleep, fogginess, my muscles spasm and ache and all my tender points are tender! VERY much so.  I waddle up to the hospital with my walker like I'm a hundred years old.  I just want things to be OK and back to normal soon.  Please God, is that too much to ask?

Hope you all are doing OK and please have as pain-free week as you can. I will try and do the same.  

God bless,
Until next post,
Missy

  

Saturday, July 10, 2010

"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

Thursday, July 8, 2010

To Mom

To Mom                   

It seems like just yesterday
Since I last heard your voice,
Yet I know that it's been two years ago.
So much has happened,
Although it seems everything remains the same.
I expect to see you walk through the door-
Your form so familiar, as I have known it all my life.
Your voice so familiar, as I have heard it all my life.
My mind can't release its vision of you from my brain,
My ears can't mute your voice,
My heart cannot say goodbye.
I hope I told you I love you enough,
Gave you enough hugs when you were down,
 as you have so often done to me.
I hope I told you you were my hero - in so many ways
 I cannot begin to describe.
You never let pain get in the way of what you wanted to do;
You comforted those around you, when you needed comfort yourself;
You gave so much  happiness and love to everyone 
 who crossed your path.
If I can take to my grave these things in which you have,
I will feel I have lived my life's purpose to be just like you.
Mom, I love you forever and I will never forget you
 and what you taught me.
You were there for me in so many ways and so many times.
You were there for me the first day of my life - 
 and I was there for you the last day of yours.


You may be gone, but certainly never forgotten.
I hope you found that peace you so desperately needed.


Dedicated to the memory of 
Cynthia Lavern Churchill-Karchunas
July 7, 1948 - July 8, 2008
                                   


















The above is a poem I wrote for my mom, for the anniversary of her death just two years ago today. Yesterday was her birthday.  She would have been 62 years old.  It's so hard to see what I'm writing now, the tears in my eyes are making the screen so blurry and fuzzy!  I never thought I'd get over her death two years ago, as that was the WORST thing to happen in my life to date. But time marches on, and while her life stopped July 8, 2008, mine must go on without her. But she is never far from my thoughts. Never!!!

I used to write a lot of poems when I was younger, in high school. I was very shy and didn't have a lot of friends, so I wrote down what was in my heart.  I've got 200 poems. I'll have to share some more with you guys and gals if you'd like.  I wrote about all kinds of things that were happening in my life at that time.  My mom loved my poems and my creative writer instructor just raved about them and how I'd make a good writer someday. So what do I go into? Nursing!  Go figure!!!  In a few days, I'll pick another poem out and include it in a post.  Hope you like it!!

FRANKIE UPDATE:
He's still in the hospital and will be for quite some time. He's developed a new complication called a "hematoma" which is medical talk for "big bruise." Except in his case, it's inside his abdomen. They are thinking this might be what is blocking things up and why he can't keep anything down and why the bile in his stomach isn't going anywhere the way it should.  They have been checking his blood count every four hours!  Ouch!!  He is going to be evaluated today for a PICC line, which will make his life so much easier as he won't have to be poked every time for blood and his IV nutrition will flow through that line, too.  The doctors want him up and moving around, so that is what we will be focusing on today when "Nurse Ratchett" gets there!  I have a rheumatologist appointment today at 10:45am so I will go to my "home away from home" after the doctor appointment.  I've been running in so many different directions, I barely know what's up anymore!!!  I know one thing, I will NEVER take my husband for granted again for all he does for me. He is the sweetest and most kindest man I've ever met and I cherish him forever.

Hope you all are doing well.  I'm so sorry I haven't been on facebook for awhile or in the support group page. As soon as I get home tonight, I'll try and catch up on my readings and messages and sorting through all the pretty facebook gifts that have come my way.  Thank you, all, so much for your love and support. You all mean the world to me!!!

God bless,
Until next post,
Missy

Monday, July 5, 2010

We've Hit Yet Another Road Block

Howdy, everyone.

I am so very depressed, agitated and frustrated tonight. My husband is STILL trapped in the hospital, he STILL has the nasogastric tube in and yesterday's trial on clear liquids was a total bust. He was vomiting by midnight. So they had to hook the NG tube back to suction again and he's been getting out oodles of drainage that isn't going down into the intestines like it should.  He's doing everything he can and is even passing gas every day and had a little "brown" accident, if you know what I mean!  So his intestines are starting to work, but they think he has a little blockage somewhere that is stopping the drainage from going down. So it goes where it can only go-UP, thus the huge amount of drainage out in his NG tube.

My husband is very discouraged. He can't sleep, he's worried, he's fidgety. He picks at everything-the blankets, the tubes, repeatedly asks the same questions because he can't focus, as he's totally exhausted. He's got bags underneath his eyes so big they could be packed and ready to go to Europe!  He's lost some weight, too, which is to be expected. They have him on IV nutrition right now, so at least he's getting some calories in.  I'm just so worried about where all this drainage is coming from and when it will stop.  Frankie is worried, too, and calls me all the time.  Last night he called me three times during the night.  So, of course, the fibro is completely out of control right now because of everything that has happened.  My legs and back are so bad, I walk like a ninety year old woman with my walker.  My right leg is almost a constant cramp and that's my driving leg!  But I'm managing.....I have to!  I can't leave him up there all alone and not visit, but this back and forth is a killer. I CAN'T WAIT UNTIL HE COMES HOME!!!!  When will that be?  It seems like we take one step forward to make two giant steps back. I feel like we are getting nowhere, and I know Frankie feels the same.  I try to hide my worry and fear from him, but I think he senses it and feels the same way.  Who wouldn't?

And then I had to have some words with one of his nurses, Bob, tonight over him calling the doctor to see if Frankie can have anything to help him sleep. Well, good ole' Bob doesn't believe in that kind of stuff and thinks Frankie has had enough. But because I feel so strongly about it, he says, he will call the doctor and see what happens.  I bet! And even if he did call, he wouldn't be a patient advocate here. He'd probably talk the doctor OUT of prescribing anything for anxiety.  But we'll see what happens.  I'm going to the hospital early tomorrow at 7am and see if I can speak with the doctor(s).  I want to find out what's going on, the game plan and the future. Today Frankie had X-rays of his abdomen to check the "gas patterns" and compare it to the films he had taken a few days ago to see if there's a change.  That's all I know so far, which isn't a whole heck of a lot.

I miss Frankie! I want him home! Is that too much to ask, God? Please help us!!  I just am exhausted, desperate and a maniac right now.  I think I'll finish this post and go to bed.  Maybe I can have a really nice, peaceful dream of me floating on a raft in the clear, blue Pacific, a little drink in my hand-the kind that has the little umbrella on top-the waves calm, back and forth, luring me into a deep slumber....then, knowing MY luck, I'd have a hurricane or sharks on my trail and be swimming for my life back to shore!!

Oh, and I also got a call from my dad this morning, before I went to see my husband.  My uncle John (Dad's younger brother) died this morning of lung cancer that spread all over his body. He was in Hospice at my aunt's house.  I didn't know about the cancer until a few weeks ago, but apparently neither did my Uncle John, either that or he chose to have no treatment for it.  I don't know.  But he died at only 58 years old. He was a heavy smoker and drinker his whole life and I know people say, well, he had it coming...but I don't agree. I don't think ANYONE has cancer coming to them, regardless of what mistakes they've made in their life.  Luckily my Uncle accepted the Lord into his life before he died.

My dad sounds GREAT. Who would have known that the cure for him and his addictions was to give him an apartment?  This first month has gone off very well, except Social Security screwed up his check and they are issuing him a new check within 7-10 days. My other uncle, Joey, is coming down and taking my dad food shopping, which I think is very nice of him.  So the Karchunas's have appeared to turn over a new leaf and actually work as a team, instead of each man/woman for themselves.

Hope you all are OK. I'm sorry to rattle on like this, but as always, I feel much better after blogging.  It IS very therapeutic and I recommend it to anyone and everyone who has lots of issues to talk about.  I like it even more than talking to a counselor.  With the computer, it's just me and I can say whatever I want. And you guys are my "sounding off" board and keep me sane.....boy, now THERE'S a hard job!!!

Take care everyone and thank you for following my blog and listening to me blather on and on. I appreciate each and every one of you!! Have a good and safe week!!!!!

Until next post,
Missy

Sunday, July 4, 2010

He FINALLY Farted!

Whew! I never thought I'd be more happy to have my husband fart!!!  Yesterday he told me he felt some "pressure in his rectum" and it came out in the version of an "air fart."  But hey, in my book, that definitely counts as passing gas!  And then throughout the day yesterday he passed several times. They started him on IV nutrition because it's going on a week and three days since he last ate. And he says he is HUNGRY! So that's a good sign. So finally the colon awakens after a LONG slumber!  Thank God-which I do several times each day for looking after my husband and for saving his life many times over. This GIST tumor is nothing to ignore, I tell you that. When he was diagnosed in 2003, the tumor was basketball sized, just laying on top of several organs and inside the abdominal cavity.  They could only remove portions of it and had to leave a lot of it in because it just was too dangerous to remove it.  So he started the Gleevec and that has been his miracle drug. He's been taking it since Sept. of 2003 and has been in remission.....and STILL is in remission. :0)  Yay!!!  To think this wasn't a tumor at all but just a tangle of arteries and veins in his intestine is phenomenal.  I've never heard of AVM's (arterial-venous malformations) growing in the intestine, but as my husband has proved, they can!

The plan today is to keep up the walking and to sit up more in the chair.  He will have the nasogastric tube clamped and if he has nausea, they will have to un-clamp it and restart the suction.  If he ISN'T nauseated, they will completely remove the tube and start him slowly on liquids.  I hope it goes that way and he can start the liquids.  That is just one more step home! He still is producing more than average stomach fluid through the NG tube, but hopefully now that the colon is waking up, it should lessen.   Another yay!  He says he can't sleep very well as the bed is uncomfortable and he has to lay on his back because of the NG tube. He can sleep for only an hour at a time and then wakes up with a lot of pain.  I feel for the poor guy. I wish I could do more for him!!!  But his colon is slower than the second coming of Christ and was in hibernation for awhile.  I HOPE this is the last GI surgery he needs. I don't think the bowel will tolerate a fifth round!!

My mother-in-law and I will be leaving shortly for another action-packed day at the hospital. We are going to stop on the way there and see if we can find him one of those pocket games that he can play. I know he misses the computer, so hopefully a little game will keep his mind occupied until he comes home.

As for me, I holding in there. I woke up stiff as a board this morning, even more than usual. My thighs feel like someone is jabbing them with knives. But no wonder with all that's been going on!  The fibro is taking full advantage to make me miserable! But I will NOT let it stop me from visiting Frankie. Thank you everyone for asking how I'm doing, too, and for all your well-wishes and prayers. Every last one is precious to me. I feel honored to call each and every one of you my friend.  Joining Facebook was the BEST thing I've ever done as I've found some really great friends AND I could start my very own support group, which is something I've wanted to do for a long time.  So if you haven't already checked it out, please do. Just click on the butterfly image (thank you, Eileen McCarthy-Keddy for the use of her artwork!) above, underneath Jesus and it will take you right to the "FibromyWHAT?" support group.  We have grown so much in such a short time and I've got a fantastic team of lead officers that have helped me out so many ways, I cannot thank them enough. And the members, too.  Let's make "FibromyWHAT?" the BEST support group on Facebook!! 

Happy 4th of July to every one of my American friends. BE SAFE and have a great time watchin' fireworks!!  Here in AZ, so many places have been banned from doing fireworks because of the high fire danger risk, that I don't know if I'll see any fireworks.  So I'll just "light" the ones I have on my farm in "Farmville" tonight. 

God bless ya all,
Until next post,
Missy

Saturday, July 3, 2010

Do I Dare Hope?

Hello, everyone!
GOOD NEWS!!  My husband just called me and said he felt some "pressure" in his rectum and it came out as gas! YIPPEE!  If my darned leg weren't hurting me so badly, I'd be doing a dance around the room right now.  Geez, do I need a life or what?  Dancing because your husband farted?!  But, this is the sign we've been hoping for all last week. Now hopefully they can clamp the nasogastric tube and start him slowly on clear liquids.  I see a light at the end of the very long tunnel. Maybe he can even come home sometime this coming week. Then, with hurting leg or not, I WILL be dancing around the room!!

Nothing much else to report. Just another day of going to the hospital and praying I can find a parking spot within a five mile radius!  And sitting in the recliner chair with my big feet propped up.  I still haven't had a breakthrough yet on my feet swelling. They are as big as ever, despite the water pill I've been taking.  I can't remember having skinny ankles, it's been so long. Or skinny anything, for that matter!  I did do something I haven't done in a long time yesterday, and that was actually do a little bit of shopping by myself.  After I left the hospital, I braved Walmart with my walker.  Of course I chose the hottest day of the year, I think. It got up to 114 yesterday and there I was, huffing and puffing with sweat pouring down my face, carrying three bags full of stuff out to the car. I actually put the bags in my walker basket and on the seat and luckily, I found a parking spot right out in front - it wasn't even a handi-capped spot, either. Imagine that at Walmart!!  It's always crazy there with NO parking spots except those out in la-la land!  When I got home, I was exhausted, my leg was throbbing, my back was killing me, but I did it and I was so proud of myself!  Again, do I need a life, or what?

That pretty much is it. I hope you all have a great 4th of July weekend and be safe.  Love ya all and thank you for your continued support of my blog and support group and all your well-wishes, thoughts and prayers.  My husband and I appreciate all of them. 

Big, gentle hugs,
Until next post,
Missy

Thursday, July 1, 2010

Red Socks

Howdy, dear friends!

Another day down and Frankie is recovering quite nicely. Not as quickly as we'd like, but at least he's making small strides in the right direction. His red blood cell count is remaining stable at 9.6 (which is still low for men, but it definitely is livable!) and I suspect they will put him on iron pills when he comes home to build up his level even more. That is what happened when he had his last surgery. Gastrointestinal surgery is such a pain in the wazoo....it takes so long for the colon to "wake up" after it has been put to sleep and actually physically touched by the surgeons. It "freezes" up and can sometimes take forever to "unfreeze."  My husband's colon was already slow as molasses before the surgery, so now it's even more so.  He was taking 8 stool softeners a day prior to surgery to combat narcotic related constipation!  That should give you an idea how slow his colon works.  If I took that, I'd be sailing the "brown seas" if you know what I mean!!!  All we are doing now is watching TV, talking, taking little walks around the nurse's station and taking little naps.  Today Frankie and I BOTH were nodding off-him in bed, me in his recliner chair. I was trying to read my book but it ended up on the floor more than anything else.  My mother-in-law took shifts today and I was there in the morning until 3pm and then she came and visited until 7pm. I came home early and took a much needed nap. Between going back and forth everyday and the record heat, I'm zapped. It got to 114 degrees today.  Getting into the car was like getting into a hot oven. And then some guy wanted my parking spot, so I'm fumbling around trying to get myself situated (after wrangling with my walker to put it into the trunk!) and get the air on, put my seat belt on (which had some kind of kink in it and wouldn't let me pull it out!) so I just backed out and let the guy take the spot and I pulled over to a side street and fixed the seat belt and got my GPS going. I use that still as I'm very unfamiliar with Phoenix streets still and if I were to get lost, it steers me right back on track. Wonderful inventions!!!

You probably are wondering why I named this post "Red Socks." Well, we've been teasing my husband about his red socks since his surgery. The hospital provided them and he's worn them proudly ever since. Many nurses say he looks like one of Santa's helpers with those socks on! So I snapped a picture so you guys could see his snazzy red socks!  Here it is:

Aren't those "da bomb?"  I told him I'd have to borrow those socks when he gets home as I just love the color red.  So we'll be fighting over those red socks, I can see it now!!!!  As you can see, he still has the nasogastric tube. The surgeon today said that MAYBE tomorrow he can get rid of it, but it still is pulling out a lot of stomach juices. So until his colon starts processing those juices, the tube stays in.  It's so frustrating! You just want to jump up and down on top of his belly and say, "work now!" Nah....my husband wouldn't like that very much!  He still is very sore!!

Here's another photo I took of him after his walk, standing up:
My poor man! He was in so much pain after the walk as he did TWO laps around the station, that he was more than ready for his pain meds.  I promised him I'd only take pics of his FRONT end and not the booty side. That got a smile out of him!!!

And, I've got one last photo I thought you might like. Frankie is on the 4th floor and the view outside his window is pretty. You can see a few palm trees and the North Mountain range in the background.  Also is the parking lot where I circle around like a crazy woman trying to find a handicapped parking spot. Most of them are handicapped in that lot, but at a hospital, there's LOTS of handicapped people!  Here is that picture of the view outside his window:

Isn't that pretty with the mountains in the background? When I very first moved to Arizona, I went a little nuts and took seven rolls of mainly palm trees and mountains. Hey, I was born and raised in Michigan...I didn't see that stuff everyday!!!  My mom loved to tease me about my palm tree pictures.  I did the same with San Diego....I've got every ripple in the ocean waves on film and video, I think.

Thank you so much for all your concern about how I'm feeling during all this. Well, let me tell you, it's been one solid week and I'm really starting to feel run down. The stress of last week, coupled with being Frankie's cheerleader/nurse this week and this damned HEAT have really taken a toll on both me and Frankie's parents. We just can't wait until he comes home. He can't wait until he comes home!!  My fibro is in flare-up mode, which is why we started the "shifts" and I come home earlier and take a much needed nap.  My legs feel like jell-o most of the time and are cramping a lot. I've upped my magnesium in hopes that will help.  I don't think I'll feel good until I have my baby home with me again!!

The fibro support group I started has been going FABULOUSLY great! We are already up to 190 members and I started it just a few days ago. So if you haven't gone to it, please do so. We have lots of discussions going on now and a lot of fantastic people with lots of experience of the daily living with fibro and other chronic pain and/or fatigue diseases.  You can click on the "find us on facebook" badge up near the top of the page by Jesus.  Hope to see you there!!

You all have a great rest of the week and happy July!!
Soft and gentle hugs to all!
Until next post,
Missy

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