Friday, September 12, 2008

Disneyland!

Terry and I decided to take Aaron for a full day to Disneyland and California Adventure before we left for our trip. Our annual passes have been blocked out since our last visit in June. Aaron has been bugging us to take him, so with kids back in school it was a good time to go. Turns out it was a PERFECT day . . . no crowds at all, pleasant weather, and lots of fun. Here's a few photos:

Thursday, September 11, 2008

9-11

Memories of 9-11.

It is forever burned into out minds that we can all state exactly when and where we were the first we heard of this tragedy. And then the disbelief, is this really happening? No way, it's got to be a movie. This is how I felt when I first heard about 9-11 in a land far, far away . . .

We were one week into our one month trip to England, Scotland, Wales, & Paris. We were staying in Edinburgh, Scotland on 9-11, having just arrived the day before. We left our B&B early in the morning, excited to tour the Edinburgh Castle. All day we toured the castle grounds with headsets, listening to the castle history and the stories of it's many famous inhabitants. We were oblivious to the world around us, immersed in the fascinating castle and medievel lifestyle. Little did we know that a horrific history was happening as we walked the cobbled castle streets.

We finished our tour and exited the castle to the Royal mile, a main drag of town 1 mile long between the castle and the Royal Queens palace of Holyrood House. We stood on the street discussing our options of where to go next, we decided to take a bus ride for a while to rest our feet. By this time, it was about 4:00 pm Scotland time, 5 hours ahead of 11:00 am EST.

A woman ran up to us at the bus stop and in her southern accent, asked if we were Americans and we said yes. She said, "Have you heard? Kamikaze planes have crashed into the Twin Towers and knocked them down!!!!" What? You are crazy, what pub did you just come out of, was our first thought. But then the look of terror on her face, told us differently. OMG, how did this happen. She boarded the bus with us and we found out she was from South Carolina, had just heard the news herself, and didn't know much more than what she told us. We thanked her, exited the bus and began to look for a newsstand to find out the truth. And there it was, huge, front page photos already printed of the horrendous event. Photos of people jumping out windows, the towers on fire, ash blackened people running for their lives. We bought the newspaper and hurried back to our B&B to watch the news, surely this was a hoax.

As we arrived, our gracious B&B host family, greeted us with a look of sadness. We excused ourselves to our room to find the TV replaying the horror over and over. Tony Blair spoke to his nation, steadfastly offering the US his support and condolences. We spent the rest of the evening in shock, especially being so far from home.

As the days progressed, we continued with our vacation, numb but resigned knowing we couldn't leave with the flying black out over US skies. We decided to carry on and try to enjoy the rest of our trip, all the while watching the BBC news every evening for updated info. As we entered small towns all over the UK, banners, memorials, flowers, and signs were everywhere supporting the US and those who lost their lives so needlessly. It was comforting knowing we were in a safe environment while traveling.

We ended our trip in Paris in early Oct., where tensions were high. National troops with guns patroled the Eiffel Tower and all tourist sights. Rumors of Europe being next on the terrorists lists, had everyone on edge in the bigger cities. By the time we were ready to fly home, the skies had been re-opened and security at the airport was extremely high as it should be. I was a little nervous to fly.

When we arrived home, we saw American flags flying everywhere. Everyone we knew told us their experience of what it was like here during that horrible time. We will never know what it felt like, we had a totally different spin on the news being in a foreign land. Josh saved all the newspapers for us, so I was able go back and reread the coverage. And on the 5th anniversary, one of the TV stations replayed the whole day as if in real time. I just had to watch, if nothing more than to see what it felt like on that day, here in the USA.

It will be a infamous day in our history that no one will ever forget.

Sunday, September 7, 2008

Why all the older blogs being re-posted?

I have had a blog on my CF forum and support forum board for a couple of years. It recently had a big 'dust-up' as so many forums do. As a result, many longtime members were banned, blogs were erased without notice and many wrong things were done and said, by both sides. I HATE board drama and have slipped away from the site, preferring not to participate.

So, I have been reposting a few, but certainly not all, of my blogs from there in order for them to be preserved. Some of these blogs are old news but yet I feel they have something to contribute to my journey that I think relevent. I'm all caught up now and then I'll continue with new ones when I return from vacation. Speaking of which ~ ~

Only one more week until we are off!
Or keep up with our travels by checking our travel blog.

: )

Awww, she's here!

Originally posted on June, 21, 2008

My beautiful Granddaughter is finally here!

Mom and baby are happy and healthy, Grandee is euphoric and in love.

Here she is:

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My first photo with both my babies.

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Awwwww, big brother's first kiss.

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I've lost 2 CF friends

Originally posted on May 15, 2008
 


I can't begin to tell you how incredibly sad and shocked I am today to learn the news of, not 1 but 2, CF friends of mine passing this past week.

D and W were both friends and long time patients at our, now former, clinic. We all jokingly considered ourselves part of the 'senior set' of clinic W at 61, me at 52 and D at 44.

W and I go all the way back to 1981 when I was first Dx. At the time I was 25, she 34. My docs brought her in to talk to me about living with CF and to have another CF adult to connect with. We became fast friends and we both did very well over the years with not many problems. She was married but never had any children. She moved to Texas for many years and we lost contact. Then a couple years back, I heard she moved back to CA. But we just never reconnected because of cross contamination issues and just busy life. We always asked our nurse about each other in clinic but never got each other's phone or email. I'm sad about that now. I had not even heard she had been struggling lately.

I met D about 10 years ago. We both participated in our clinic's Annual Education Day as adult speakers on a panel of usually 5-6 adult patients. The Ed day is held for all CF patients and their families and health care workers who wish to learn more about CF. The day always includes lunch, many healthcare speakers and a rare social opportunity for us adults to get to know each other better. And of course, using infection control, masks and kept at arms distance. D was easy to talk to, kind, funny and soft spoken, a loving husband, a doting father to his 8 yo daughter M, and a proud stay-at-home Dad.

I last saw and chatted with D in Feb. He seemed fine and actually said everything was great with him, still enjoying and spending time with M. He was toying with the idea of working part time from home. I remember we both 'retired' from our full time jobs around the same time 8 years ago, him to care for his baby full time.

I know how fast CF can rear it's ugly head and take a devastating turn for the worse. Such is the hideousness that is CF.
Both of my friends' untimely deaths were not only quick but also unexpected. They both will be truly missed.

The gut wrenching reality of CF really hits home when you personally know someone who has been so brutally taken away. We all endure constant losses and reminders of what lies ahead for ourselves. I HATE IT!!!

My sincere condolences go out to their families and friends.
I pray for strength and peace in the coming days as they say their final goodbyes.

For W and D . . .
I will forever remember your smiles, your laughs and your joyful insights.
You both had an incredible sense of optimism, sanguinity and strength.

Peace be with you, my friends . . .


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In & out pokey game

Originally posted on April 27, 2008

Arg, I've been locked up for the last 8 days in that place.
But this visit was different, not a lung exacerbation this time.

My pancreas decided to finally take a dump.
Yes, I've gone from Pancreatic Sufficient to Pancreatic Insufficient within about a 3 week time frame. Meaning the enzymes released from my pancreas are insufficient and no longer able to help me digest food.

I was having all kinds of weird GI issues that I've never had before. Every day was a new adventure of what I'd find in the toilet or not, bizarre intense cramping & stomach aches, extreme hunger and blood sugar dives. Two weeks ago the stomach ache from major Hell invaded to the point of shear agony. I told Terry, "Just shoot me now."

Yep, full blown pancreatitus . . . OUCH!

I called clinic and after hearing my symptoms, my nurse Debbie said you need to come right down to the hospital, we're admitting you. I was immediately admitted, had many Gi tests, CT scan, swallowing all kinds of nasty schtuff, hurled my guts out, and I couldn't eat, not that I wanted to. For those who have had kiddos, think non stop labor type pains front and back for 5 freaking, solid days! The pain and anti nausea IV meds kept me sleepy most of the time, so that helped some.

After 5 days, they gradually added a clear liquid diet and then solid foods with my first enzymes. I started to feel better after a couple more days, so now I'm home, sweet, home.

This was actually the second time I've had pancreatitus. The first was 25 years ago, and shortly after I was DX diabetic. That time killed off half my pancreatic function, this time finished it off.

My body sure knows how to announce a big fanfare event of things to come!

So here I am, trying to get my digestion back up to snuff and learning about the joys of being PI. It seems to have really thrown my blood sugar control out the window. Me thinks because I'm absorbing more, so need more insulin? Or my pancreas has quit working all together. Before this bout, I at least had some insulin production supplemented with my injections. I see my new Endo and clinic this Friday to sort things out.

Even though they are gradually subsiding, I just want the stomach pains to completely go away!!

*sigh*

Just one more thing to deal with.
But I do realize, I have been extremely blessed to have been PS all these years, and for that, I am truly thankful.

3-30-2000

Originally posted on March 30, 2008
 
3-30-2000
Just another day, exactly 8 years ago. Seems like a LONG time ago but yet it seems like just yesterday. But a life changing day for me that I am forever grateful.

I remember arriving at the hospital before sunrise. I'm led to the surgical suite prep for my complicated and hopefully, life saving surgery.
I'm nervous yet resigned, never once thinking about a bad outcome or what I would have to endure post surgery. All I knew is that whatever was in store for me had to be better than the state of my health the past year.

Eight months of IVs, 40 lbs of alarming, quick weight loss, fevers, no sleep accompanied by night sweats, hurling everything I ate, and unbearable, non stop hacking my head off.

It all took it's toll on me to the point of being exhausted & numb.
NOTHING was working, I was in a freefall, I knew I was dying.
Pictures of me from that time period don't look like 'me'.
I was an empty shell of someone who resembles me, but completely, emotionally and physically spent. My buddy MAC was in the driver's seat, out of control, causing me to crash & burn.

The last thing I remember is the nurse saying it's time to go.
Terry gave me one last hug, kiss and 'I love you' as the nurse pushed a drug into my line, I was immediately out and in la-la land.

My next foggy, surreal memory was 4 days later, when a nurse yelled into my ear. "We are going to remove the vent tube and you HAVE to breathe on your own. TAKE A BREATH!
I vividly recall thinking, "Oh Lord, please let me breathe, just breathe."
As I drew my first unassisted breath, I was overcome with a feeling of relief and smack-me-in-the-face realization of where I was. I didn't know the day, time or date, nothing mattered . . . I knew I had made it through surgery and I was on my way forward. Two more days in the ICU, then on to a private room that became my home for the next month of recovery.

My surgery was called a 'wedge resection'. MAC had literally eaten away areas of my left lung, leaving large, non functioning pockets filled with bacteria with no way to escape. Since tests revealed that some areas of my lung were still functioning, my thoraxic surgeon decided to perform the resection rather than remove the whole lung. His reasoning was to leave me with as much, viable lung as possible. A straight lobectomy was out of the question because both lobes were affected. He explained that resection recovery would be hard and long, waiting for the incisions and sutures in the lung to heal. I knew it was a last ditch effort . . . so let's do it!

Here's a quicky drawing showing the resection I had, about 2/3 was lopped away.

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My one month stay in the hospital was a challenge. I had 2, 2' long x 1" diameter chest tubes to not only drain excess fluid but to serve as an escape for air leaked from between the stitches of my new shrunken exhaling lung. The tubes were extremely painful, requiring the opiate, narcotic Dilaudid every 3-4 hours. The euphoria I felt as the Dilaudid entered my veins was indescribable. I could feel an incredible, feel-good-warmth spread to every part of my body before the syringe push was finished. My mind was at complete peace without a care in the world. The pain, INSTANTLY gone. Without looking at the clock, I could tell exactly the 3 hour mark since my last fix. The intense chest pain rolled back in a wave of vengence. I would try to wait 4 hours, but by then it was excrutiating. Oh yeah, push that button, call the 24/7 pusher, oops uhhhh, I mean nurse, give me drugs - now!

Ummmm yeah, let's just say, that I now know what a heroin addict experiences when they shoot up.

Not only did the Dilaudid do an excellent job at keeping my pain at bay but I found myself with a new dilemma. When the tubes were finally pulled 5 weeks after surgery, I no long needed the Dilaudid for pain. But mentally and physically, I craved it, and soon found out that I was indeed, addicted.
HUH-ME? Someone who doesn't even drink, A MAINLINER DRUG ADDICT?!?!
Yep, it had a hold on me. Methadone became my 'Dilaudid replacement' to help go through withdrawls that lasted 2 weeks. It was miserable - UGH!

As I continued to recover at home, I rebuilt my endurance with daily walks.
After a month, I felt better than I had in 2 years.
Surgery was a complete success and restored health that I thought was ancient history. The next 2 years were filled with intense, nauseating, oral ABX cocktails to finish eradicating the MAC. It worked! I 've not cultured positive for MAC since. *** knock on wood ***
But I did pick up the dreaded MRSA bug in my lungs from that long hospital stay.

Would I do it all again?
Absolutely, in a heartbeat!

The last 8 years have brought me more happy memories and enjoyment than ever before. I re-prioritized my life and started living "my bucket list", savoring and living every moment. That's not to say I haven't had my struggles since, but nothing compared to what I know it could be. I've learned to take what ever CF crap is thrown my way in stride and do the best I can to beat the current situation. 

My only reminders of that day are the 12" chest scar from front to back and 2 round, quarter sized, hole scars.

They are my battle scars & proof of another war won.

Not in a million years . . .

Originally posted on February 13, 2008
 
Not in a million years . . .
Did I think I would still be here in 2008.

Another year and a another Birthday has come and gone.
Although, the party's been lasting for 3 days now with the many visits, calls, emails, cards, well wishes and celebratory meals out.

My Birthday is always a time for reflection and thankfulness, that yes, I've seen another pass by.
My friends don't share my glee when their Birthdays roll around. They whine and complain that each coming Birthday is a descent into the abyss of old age hell. I'll take 'old age hell'.

I'm truly thankful for each year and smile as I once again defy medical predictions. I'd love to go back to the Internist's office I visited almost 27 years ago and look him in the eye once more, just to tell him how wrong he was.

After a multitude of tests and head scratching, every test came back fine. As a last resort, a sweat test was ordered, just for elimination purposes of course. In the docs thinking, no one is 25 and dx with CF, no one. Me, didn't have a clue they were checking for CF, it was just one more test I had to sit through. I remember thinking as they attached the pad to my arm, WTF - this seems so stupid. How is this little bit of sweat on this little pad going to tell the docs anything?!?

Little did I know, it told plenty, more than I ever bargained for. That day in Oct. 1981, changed my life as I knew it, forever.

I got a call a couple days later that all the test results were in and could I please come down to the office for a consultation. I will never, ever forget sitting in the doc's office, by myself, studying the pictures on his office wall, waiting for him to come through the door. I remember thinking how irritated I was, waiting so long for him when I had a babysitter watching my 2 babies at home. Come on, just give some pills for whatever is wrong and send me on my way. I really don't have time for this. I've sat in way too many doc waiting rooms in my life and literally had no patience for them.

Turn back the clock and here's the conversation from that day.

Looking me in the eye Doc:
Well, we finally know what is wrong with you.
You have an genetic, children's disease called Cystic Fibrosis.

Naive Me:
OK, I've heard the term, so what exactly is it? (Mostly, confused and thinking children's?)

Doc:
It affects the lungs and upper respiratory systems and interrupts digestion.

Light bulb moment Me:
Ah, so that probably explains why I've had so many sinus surgeries, allergies and chronic brochitis my whole life?

Shuffling and looking at his papers, Blunt Doc:
Probably, but CF is more complicated.
It's considered a progressive, fatal disease.
Life expectancy is 14 years, you've far outlived your predicted lifespan and you should have died already.
At best, you probably have about a year to live.

Looooooooong silence.

Deer in the headlights Me:
HUH?!?! I don't understand. How could that be, explain it to me.

Here's the part that gets very fuzzy and I don't remember much.
My hearing and comprehension were not functioning at this point.
Good God, I've just been told I'm going to DIE from an insignificant, friggin sweaty patch.

Speaking in BS medical terms, matter-of-factly, cold doc:
Blah, Blah, Blah, in a nutshell, explaining how CF will kill me.
Right now, there is nothing I can do for you.
I suggest you find a GOOD pulmonologist, MAYBE he can give you more answers.
(He shoves a card toward me).
Call this guy, he's in the building across the street.

Stunned, shocked, upset, alone, VERY ANGRY, crying Me, left his office trying to digest what I have just been told.
I can't be dying.
I'm not that sick.
I have a 6 mo old baby and a 21 mo old toddler.
This is NOT happening.
It's a lie and the doc doesn't know squat.
This is crap.
The doc was an A-hole for lying and upsetting me.
I'm going to see another doc who knows his stuff and tell me that is was all a big mistake and tell me something different.
(Sigh, yeah I know, denial at it's finest.)

I drove home, called my Husband at the time, told him - called my family, told them. Nobody believed the dx. I found out about CF foundation, contacted a recommended clinic for a second opinion, and it was confirmed with 2 more sweat tests. They assured me, that yes, they could help me and I'd be just fine. Their patients included a handful of adults in clinic that were flourishing. A handful eh? Well, I'm ready to be counted into that handful. Let's do it. And just like that, my old life disappeared and my new life began.

I walked into that clinic 27 years ago.
I still go to that same clinic.
Even though the address and the many caring faces have changed over the years, one of my docs from the very beginning is still there.
We grew up and old together.
I owe my life to everyone at clinic for believing in me and carrying through with exactly what they said they would do - keep me alive and flourishing.

I'm off to go flourish some more, indulging in another Birthday lunch!

Thursday, September 4, 2008

My Christmas Gifts 2007

This was originally posted on December 28, 2007, on my other CF blog/forum where I don't post anymore.

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I got 2 new things I hadn't planned on this year.
And what a surprise they were.

On Dec 15th I attended my Grandson's 3rd BD party.

Lo and behold someone showed up to the party sicker than a dawg, spreading their wretched bugs to everyone. Who the H*ll goes to a child's birthday party sick??

Long story short, 2 days later I got really sick, along with about 5 other people that were there that day, including Terry.

I've been teetering precariously on the sickness edge since last admit in Aug. so I knew this was something I couldn't shake off myself. I just knew what was in store for me as I packed my bag for a clinic visit. And I thought in the back of my mind that I was prepared to accept the fact that Christmas dinner at our house probably wouldn't happen this year.

And then, the words I dreaded to hear . . . . you need to go in.

NOOOOOOOOOO! It's the week before Christmas, I'm having my family over for dinner on Christmas Eve - I CAN'T!  I was furious but yet resigned, knowing I have to do what's best for me. I drag my butt from clinic directly across the street to the hospital. ARRRGGG.

So here's my first gift.

Instead of getting a lovely 4th PICC line this year, I agreed to my first port-a-cath. I was done with PICCs and my docs have been after me for a while now to praise the joys of a port. I had already told myself in August, "next admit, I'll do it." Little did I know that it would be a surprise Christmas gift to me.

Port surgery went fine although I didn't like that were only going to give me the lidocaine shots and no loopy drugs. Ask and you shall receive, got me some Versed (?) and made me just a little sleepy. But I ws still able to talk and joke with the team to help relieve my stress through the procedure. I chose to have it placed on my right chest, below the clavical. It was painful the first night but better every day after.

As Christmas Eve morning arrived it looked like I was not going home. My kidneys have been struggling with drugs again, we readjusted doses several times and were waiting for one last blood test to see if my kidneys were finally behaving. At 3:00 the answer was in - YESSSSSSS - kidneys were in normal range again and we could go home IF home health could be arranged for Christmas Eve night delivery of my home IV drugs and equipment.

I placed a flurry of phone calls, that yes I'll be home. My daughter, SIL and son raced over to our house and starting cooking dinner for everyone. I was finally released at 5:00 pm and came home to my waiting family, a home cooked meal, laughter, love and togetherness.

It was the best, blessed, Christmas gift of all.

Wednesday, September 3, 2008

Gray Hair!

This was originally posted on August 8th 2007, on my other CF blog/forum where I don't post anymore.

Singular. I finally found one and only one. Guess where.

I was plucking my eyebrows yesterday.
Thankfully, I don't need to do this wonderful chore very often because my brows are naturally very blond, fine and almost non existent.

So I hold up my 10X mirror.
And there it is, all thick and burly like, pointing straight at me as if to say, "here I am."

After inspecting it for a minute, I determine that it has been there a while, because it was pretty darn long.
I contemplate as to whether to exterminate it or leave it. Hmmmmm.

Then I remembered the old adage, "Pull a gray hair and two grow back."

Nah, leave it.
It doesn't bother me in the least and I've certainly earned it!