2008, a year of reflection

As I sit here on the last day of 2008, I'm truly thankful for yet another year come and gone. Fantastic, horrible, glorious, painful and back to wonderful again. . . the year has run the gamut of good and bad. Highs and lows, makes life interesting albeit challenging.

The most memorable day of 2008 was the day our little Grandbaby Audrey came into our world on June 19th. What a bundle of love and joy she is for me. It is like de je vu for me as well, she looks so much like Jen did as a baby.

We can also count our travels as a high point this past year. We went to Disney World in Feb for 10 days and France, Belgium and Netherlands in Sept-Oct for 3 weeks. We had a fantastic time on each trip, even though they were very different.

Work has been steady and productive for Terry, even though we took 6 weeks vacation. It was a good year until November when the brakes kicked in and work skidded to a halt. We are worried about work coming his way in 2009, as is everyone. 

Anyone need the services of an Architect? There, my shameless plug! LOL!

Let's see, Terry turned 53, me 52. We've been married 16 years, who knew the Pennysaver could produce that?!?!?

And then, there was all my medical schtuff, which I won't recount here, but suffice to say I filled MY quota. Terry was well up until Dec. when by my prodding, he finally went to have the 'mystery weird bump' on his nose checked. Yep, cancer. He goes in January to have it cut and dug out - YIKES! I told him he might not have a nose left, he he.

Aaron had his share of surgery too. Poor little guy had to withstand, not 1 but 2, hydrocele surgeries when both testicles became swollen and enlarged. Of course they happened months apart, Spring and Fall, so it required 2 separate surgeries. But he came through with flying colors, with not much pain or remembrance of either incident.

And then poor Bucky, he is such a good cat. He was at the vet 4 times this year. As a diabetic cat on 2 insulin shots a day, he sometimes has high blood sugar issues that land him in the hospital for a re-evaluation and insulin adjustment. He just HATES going to the hospital. Our bank account does too! ; )

Other than day to day life, that's been our year. I hope I can look back and remember 2008 in the happier lights, to say 'Yep, 2008 was a great year."

Here's to 2009, for a Happy and Healthy New Year!


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A new normal

What is considered normal anywoo??

I do know what my 'normal' feels like, at least in the world of CF.

Since summer, my normal has changed. I'm not sure if my sinus surgery and anesthesia had a hand in triggering the change or not. But I definitely have lost some lung function over the last 5 months. Lately I've been short of breath doing simple things like casually walking, eating or talking. Grrrrrrrr. I don't like it one bit. I don't like feeling like I've just taken a run up the block after eating a bowl of cheerios.

The numbers don't lie. I had a clinic appt today, and yep, my PFTs are down, down from just 12-8-08 release from the hospital. I really didn't need a PFT test to tell me that, I knew. So after having my PFT's stable at around 55%, give or take, the last 8 years, my new baseline PFT is at 50%. A huge difference to lose in just 5 months. A huge difference in the world of breathing.

My doctor went over my chest xrays and CT scans since April. I've had significant progression in my lower left lobe area. This is the same area I had carved up and pieces removed almost 9 years ago. My poor itty bitty left lung has finally given in and up. I virtually have very little lung function left there, trapping secretions in dead spaces. Again no surprise to me. I can feel that area fill up with goo, gurgling and whistling as I breathe. Yes, you can hear it from the outside of me.

I am actually blessed my surgery 9 years ago kept my left lung viable as long as it did. My thoraxic surgeon at the time, said he would be happy with a 5 year success. He said that if the partial removal didn't work, I may be facing a total left lung removal down the road. I'm at the end of that road now.

I discussed this option with my doc today. She said at the time, that may have been the case, but not now. My right lung has also progressed, although not nearly as bad as my left. If we were to remove my left lung, my right lung alone would only be under 40% lung function, which is nearing transplant talk time. So transplant is my only next option.

So I am now to become more 'aggressive' with my treatments to target my left side. Gotta keep the goo-pooling from growing bacteria and bugs that make me sick. Lying on my right side, on a 60 degree slant, head down, and either use my vest and or have Terry beat me, LOL! Good old PD & P - Postural drainage and percussion. This is in addition to the already 2-3 full on treatments I already religiously practice.

Meh, so CF is my whole life . . . it is my full time job.
I always knew this day would come.
This is my new normal.

Our Christmas 2008

Make a Smilebox slideshow

. . . just wanted to say

My prayer is for all my family, friends and families to have a very
Blessed and Merry Christmas!

May the New Year bring health and happiness.

The Cab Ride

My cousin sent this to me, and it virtually left me in tears.
A beautiful, touching story and perfect timing for me to read during the Holiday season.
I was just about to write a post about being a 'Bah Humbug' this year.
I think I like this better.

Thanks Cindy, for sharing a very enlightening story.

The Cab Ride

I walked to the door and knocked. 'Just a minute', answered a frail, 
elderly voice. I could hear something being dragged across the floor. 
 
After a long pause, the door opened. A small woman in her 90's stood 
before me. She was wearing a print dress and a pillbox hat with a veil 
pinned on it, like somebody out of a 1940s movie. 
 
By her side was a small nylon suitcase. The apartment looked as if no 
one had lived in it for years. All the Furniture was covered with sheets. 
 
'Would you carry my bag out to the car?' she said. I took the suitcase 
to the cab, then returned to assist the woman. 
 
She took my arm and we walked slowly toward the curb. 
 
She kept thanking me for my kindness. 'It's nothing', I told her. 

'I just try to treat my passengers the way I would want my mother treated'. 

'Oh, you're such a good boy', she said. When we got in the cab, she gave me an address, and then asked, 'Could you drive through downtown?' 
 
'It's not the shortest way,' I answered quickly. 
 
'Oh, I don't mind,' she said. 'I'm in no hurry. I'm on my way to a 
hospice'. 
 
I looked in the rear-view mirror. Her eyes were glistening. 'I don't 
have any family left,' she continued. The doctor says I don't have very 
long.' I quietly reached over and shut off the meter. 
 
'What route would you like me to take?' I asked. 
 
For the next two hours, we drove through the city. She showed me the 
building where she had once worked as an elevator operator. 
 
We drove through the neighborhood where she and her husband had lived when they were newlyweds. She had me pull up in front of a furniture warehouse that had once been a ballroom where she had gone dancing as a girl. 
 
Sometimes she'd ask me to slow in front of a particular building or 
corner and would sit staring into the darkness, saying nothing. 
 
As the first hint of sun was creasing the horizon, she suddenly said, 
'I'm tired. Let's go now.' 
 
We drove in silence to the address she had given me. It was a low 
building, like a small convalescent home, with driveway that passed 
under a portico. 
 
Two orderlies came out to the cab as soon as we pulled up. They were 
solicitous and intent, watching her every move. They must have been 
expecting her. 
 
I opened the trunk and took the small suitcase to the door. The woman 
was already seated in a wheelchair. 
 
'How much do I owe you?' she asked, reaching into her purse. 
 
'Nothing,' I said. 
 
'You have to make a living,' she answered. 
 
'There are other passengers,' I responded. 
 
Almost without thinking, I bent and gave her a hug. 

She held onto me tightly. 
 
'You gave an old woman a little moment of joy,' she said. 'Thank you.' 
 
I squeezed her hand, and then walked into the dim morning light. 

Behind me, a door shut. It was the sound of the closing of a life. 
 
I didn't pick up any more passengers that shift. I drove aimlessly lost 
in thought. For the rest of that day, I could hardly talk. What if that 
woman had gotten an angry driver, or one who was impatient to end his shift? 
 
What if I had refused to take the run, or had honked once, then driven 
away? 
 
On a quick review, I don't think that I have done anything more 
important in my life. We're conditioned to think that our lives revolve around great moments. But great moments often catch us unaware - beautifully wrapped in what others may consider a small one. 
 
PEOPLE MAY NOT REMEMBER EXACTLY WHAT YOU DID, OR WHAT YOU SAID, BUT THEY WILL ALWAYS REMEMBER HOW YOU MADE THEM FEEL. 

 
Be thankful for all that you have.
May God Bless you and your family this Holiday Season!

HOME!

'nuff said.

Vacation!!!

So soon after the recent, long trip to France, you ask? Yes, this was a last minute trip that I was hoping would happen. Just a short road trip to my final destination.

And just where did I go? Here's a hint:
The skyline of the beautiful (?) city I'm staying.


The 'resort' where I'm staying, is all glass, modern and very sterile white.


I checked into the lobby and got my room number. A kind volunteer helped me with my bags, as we entered the elevator to the 6th floor. I was anxious to see my room for the first time. Ah, Room 622, home away from home.
Here are some of the wonderful ammenities of Room 622.
A 'spacious' private room, decorated in antiseptic white, with a fabulous view of the 'resort'.


My own bathroom, again decorated in chaste white.
I've got my own bed that is even adjustable, cool! And look a few nice touches from home, a nice cuddly, green blanket and even comfy pillows especially for me.


I have several amazing, friendly 'attendants', that wait on me hand and foot, 24/7. A push of a button summons them to my feet, delivering anything I need. They insist on bringing me all kinds of goodie bags, every 6 hours.


I also have 24/7 room service, with respectable food. Like clockwork, my meals are delivered right to my lap . . . talk about service . . . breakfast in bed!!! (and lunch and dinner too.)

My vacation will last at least a week, maybe 2, depending on how long the boss 'lets' me stay. I plan on catching up on reading and cleaning out my computer. Here's me relaxing the day away in my luxurious surroundings.


Hope you enjoyed my vacation photos, you should visit here someday soon!!

Ok, Ok ya got me! 

You want the real story?

I've been feeling pretty rough the last month. As much as I try to hide how bad I feel, apparently everyone close to me can see right through the facade. It is hard to hide shortness of breath, constant coughing, and just plain NO energy.

I made a Doc appointment for Nov. 10th, about a week into the "I don't feel so hot month." My PFT (pulmonary function tests) numbers were down, but not drastically. Lungs sounded junky, but they've been worse. My weight and appetite stable. Doc didn't want to start antibiotics just yet, instead he increased my home breathing treatments to 3 a day to see if that does the trick. Go back on 12-1, re-evaluate, and then decide if it's time for a tune up.

I know my body and symptoms, when it's time for a tune up of IV drugs. I KNOW when I get SOB going up the stairs at home, that is an indicator that something evil is brewing, needing attention. Coughing fits until pass out or throw up is NOT my idea of fun. And feeling like I have severe flu for a solid month, that I know won't go away, is not an option. Oh heck, even Terry knows when I've crossed that imaginary line of no return. The guest bed or the downstairs recliner sofa gets plenty of use from one of us, when I cough uncontrollably all night long, he he.

My 12-1 appt rolls around, and sure enough, I'm feeling more lousy than ever. I leave home prepared, loaded down with packed bags, fully expecting a 2 week stay. My PFTs are down even further, thrusting me into the never-before-visited-40s% lung function. A number that scares the jeebers out of me. I've been in the 50s for 8 years now, slipping into the lower decade of numbers is clearly NOT something I want. Thankfully my doc agreed, he admitted me, and I hussle my butt and bags across the street, tail tucked between my legs. Honestly, when I get to this point of downward spiral, I almost look forward to a round of IVs, just so I can feel better.

I'm now 5 days in and I'm responding well to the IV cocktail of 2 drugs. My cough has all but disappeared. My restlessness makes me feel like a caged animal, pacing the hallways, looking for a hole to escape. Thankfully, USC does let us go outside in between treatments. Terry and I went down to the cafeteria today, ordered lunch to go and ate outside in the glorious sunshine.

The plan is to keep me locked up until Monday 12-8, do more PFTs to see if I've improved. If so, the doc says I can go home the second week and finish up the IVs.

YAY!
My vacation just might be cut short, fine by me.

Sleep here I come.

Elfing Ourselves

I guess it just wouldn't be the kick off of a holiday season without Elfing ourselves.

HA HA!

Send your own ElfYourself eCards

Halloween Carnival 08

Once again we celebrated Halloween at Jen and Brent's church for their annual Halloween carnival. We left home just as the sun began to go down, so we didn't get a chance to see our neighborhood trick-or-treaters.

Like last year, Aaron just had to dress as Buzzlightyear. He has a massive obsession with Buzz, Woody and Jessie, although when it comes to dressing up, Buzz always wins. Makes me wonder when he will finally tire of his hero. Little Audrey looked adorable in her precious, cuddly pink, bear suit. Even Mommy got into the spirit sporting her kitty ears.

The church pulls out all the stops to make a great event for everyone. A huge BBQ area flipped burgers and dogs for those who hadn't eaten dinner yet. The kids had so many fun things to participate in that Aaron couldn't decide what to do first.

They had tons of carnival booth games set up for the kids to win their candy booty, lots of blowup jumping houses and slides, a cakewalk, mini golf, and a little train that circled the church grounds. I just loved seeing all the little kids dressed up and having the time of their lives, without a care in the world.

Everyone had a great time and Aaron filled his pumpkin full of goodies. What a safe and fun alternative to the traditional trick or treating.

We returned home around 9 to a quiet neighborhood. By then, all the little kids were done with their candy rounds and only the too-old-to-trick-or-treat kids were out begging. I left the porch light off . . . we were boo-humbugs!!!

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Denial and Revenge

Ok, it's been a long time since I've posted.
But to be fair, I've been busy trying to finish up the travel blog and France trip. Now that I've relived my trip through the photos and blog, I wonder, "How in the world did I keep going at that pace?"

Our vacation has made me come face to face with my reality once again. Things I don't want to admit, much less blog about. I guess that is the purpose of this blog . . . to dump my thoughts & feelings here, however raw, bitter and nasty they may be.
So be it.

My big realization: I can't travel anymore. At least, not on our long stints overseas.

I felt like $h*t, literally, most of the trip until the last week, having some pretty major digestive issues. I know the 9 hour time change and different foods were responsible, but that goes along with traveling. I had 2 1/2 full weeks of the trots and severe stomach aches, in a country where the toilets and cleanliness leave something to be desired, twas not fun. Terry kept asking if I needed to go home, but my persistent, determined, "I can do this" attitude stood in my way. As usual, I powered on. I could have really caused myself some dire consequences with an intestinal blockage or pancreatitus had it not cleared up that last week. In a France hospital no less.

Outstanding denial, I must say.

My denial of my CF is nothing new. It took me way too many years to come to my place of acceptance with my lungs, meds and diabetes. The last couple years have been another wake up call, that I must be compliant with all my meds and treatments - sometimes consuming 4 hours a day. I used my same headstrong attitude in reverse to be compliant and it has worked. I've definitely seen improvement in my lungs over the last 2 years.

April of this year threw me under the bus. After having a bout of pancreatitus . . . my pancreas is no longer working. No insulin, no enzymes, nada coming from my pancreas. All of a sudden I was faced with new CF challenges.

My diabetes had been very stable. In the last many years, I was in such a routine that I had very little problems. Since April, I'm more or less like a type 1 diabetic now, injecting double amounts of insulin, and very often. I'm trying to relearn all over again how to accommodate my new baseline eating patterns and exercising, and it's been tough. I'm attending sessions with a diabetes educator for help and am considering an insulin pump, sending a constant steady, stream of insulin to my blood.

And now, since my pancreas can no longer digest food, I take enzymes before every time I eat.
20- 25 pills a day added to my ever increasing drug repertoire.

Plus, my sinuses have wound up into full gear the last year, causing all kinds of sleepless, snotty grief and surgery.

All 3 of these new situations added up, chucking me into the all too familiar, overwhelming denial mode - UGH! I'm fighting it constantly in my head. While I'm being compliant about taking everything I should, I still fight the nagging feelings that 'no, you don't need to do this or take this or just plain 'I don't want to'. Psycho, I know.

I know, I'm rambling, but I'm coming full circle.

Once aqain, CF unwittingly or intentionally, wins again, at least this round.

It has 'taken' one more thing from me that I can't do - travel.
Do you know how hard it is to admit you can't do something you LOVE?
My mind flashes back to 2000, when I HAD to quit my job because of this damn malady CF.
This is for you CF . . .


Love note to my Dear CF,

You know me all too well . . . that adamant, bullheaded, jackass, stubborn side of me.
You used it quite effectively, over the years to get your way.
You cast me into your deceitful grips, your insidious power . . . to progress the physical ME, downward.

You've given me enough stretches of healthy, good years to tell me,

"You don't need 'no stinkin' breathing treatments or a vest.
You're chubby, you are digesting just fine.
Hey look, even your CFRD diabetes is under control.
Yes you have me, CF lurking within, but you are a mild case.
Take a look around at your CF buddies, they are different.
No, I take that back, YOU are different.
You ARE NOT like the others, you'll be fine."

BS!

Now the tables are turned my CF traitor.
I WILL use my tenacious, rebellious ways to outwit you.
I WILL use my mind tools in MY favor to figure out how to continue traveling.
I may have to change things up a bit, but I'll make it happen.

You may have tried to win this last battle.
But you won't win this war.
You'll see.

Your afflicted, but revengeful, body host,
Jodi

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:

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.

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:




My first photo with both my babies.




Awwwww, big brother's first kiss.

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 . . .

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.



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!

My Christmas Gifts 2007

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



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.

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!

Old Fart

Old Fart is the name I teasingly and affectionately call my 83 yo Dad, since he turned 70. He's in amazingly good health, completely self sufficient, living independently and kickin' strong. I believe I have some of his good, strong, longevity genes lurking in me that work in my favor along side my not so good CF genes. All my Grandparents lived well into their late 80s and early 90s and my great Aunt lived to be 102!

I've always regarded the term 'Old Fart' to describe old men only.
But lately, I just may have to redefine my thinking.

I don't know when it started . . .
I don't know when it happened . . .
But I feel I've definitely turned that imaginary corner and officially feel I'm a member of the Old Fart Club!



Besides living all the Maxine-isms, here's a list that leads me to believe I've been initiated:

1. I rarely go out at night anymore and I hate to drive in the dark. Something about the headlights in my eyes just doesn't set well with me anymore.

2. Speaking of eyes, I can't see without my glasses. At all. I don't even try. I don't enjoy seeing the world through a blurry mess of color.

3. I belong to AARP and love the discounts they give me on everyday stuff. I read their magazines and web site, scanning for 'exciting' offers. And the other day while shopping in Kohls, the 20 something cashier automatically gave me a senior citizen discount. Do I really look THAT old?

4. I use coupons at the grocery store and use reusable, cloth grocery bags.

5. I recycle, but yet I've always done that. I firmly believe in preserving and restoring Mother Earth.

6. I look forward to the mailman coming everyday. Maybe he'll bring me something good besides bills. Or maybe not. I still look forward to chatting with him.

7. I no longer want a household filled with 'things' I've made a concious effort to clear out every drawer, closet, and cranny of anything I haven't used in the last year. A side benefit I hadn't counted on, it helped clear me mentally as well, knowing I rid my life of crap I don't need or want.

8. I don't care that my gravestone won't read, "Jodi, may she RIP. She had the cleanest house on the block" Pleeease, the dust bunnies will be there tomorrow waiting for me. This wasn't always the case, I'm so much more lax about cleaning now.

9. I don't want gifts, I'd rather make memories.

10. I'm pretty sure I suffer from A.A.A.D.D. - Age Activated Attention Deficit Disorder - I can't seem to stay focused on any one task before i switch gears and start another. Pretty soon I have 20 things going at once, get overwhelmed and ditch them all.

11. My mind has selectively eliminated facts that used to float around my head that I no longer need. See #7 - this applies to my brain too.

12. My one gray eyebrow hair has turned into about 6 in just a couple months. They're breeding.

13. My face is becoming my Mothers, wrinkles, turkey neck and all. And I am so cool with that! (I so terribly miss my MOM )

14. I've s-l-o-w-e-d way down. I know some is CF related, BUT I can gauge by what is happening to Terry too, he's also an Old Fart one year older than me. My mind still thinks I'm 18, but my body knows better.

15. I've got kids pushing 30! Where does the time go!?!

16. Medically, I don't bounce any more. This last year has been a glaring and painful reminder of that fact.

And lastly, these 2 may be a little TMI, but oh well, it's all part of it.

17. Gravity is not kind. My (_!_) has a whole new relationship with the back of my knees. My (.) (.) stare at my belly button all day long now.

18. And lastly, my monthly friend since I was 10 finally said sayanara 2 years ago. See ya, I won't miss you! YEAH!

So there you go!
I'm sure there are many more, my mind just can't think of them right now! I'm done dripping sarcasm.
Anyone else wanna join my Old Fart Club?

Even Steven

We both open our mouths,
And make a noise,
That neither one of us enjoys.

I cough,
You snore,
We're even.

I complain,
You complain,
We're even.

Even Steven.

That is all.

Our Anniversary was August 15th

16 years? Has it really been that long?

We met in 1991, in a most unusual way.

I was 35 and had been a struggling single Mom for almost 5 years, working, raising my 2 kids and finally felt at peace being alone. I was once again having fun, being single, spending time with friends and my kids. He was 36, also single for 5 years and raising his son. I didn't expect it or went out looking for it necessarily.

My single girlfriend and I would read the "Datemaker" personal ads in the throw away Pennysaver. We laughed at their phony and puffed up descriptions of themselves. Surely these desperate people could not possibly be the real deal, they seemed too perfect and beyond.

We thought it would be a hoot to place our own ads just to see what kind of response we would get. We placed and boy did we ever get responses. The calls were made to a safe answering machine mailbox where we could access phone messages and decide for ourselves if we wanted to respond or not. I got over 100 messages in 3 days!!!

Apparently, there was a demand for a 30 something, single mom who liked to camp, snow ski and ride motorcycles. And yeah, some were creepy stinkers - click, hang up. Like one creep who asked me on the message if I would join him at a NUDIST CAMP that weekend! Um, let's see, that would be a BIG NO - click, erase! Others seemed nice enough of the few whose calls I did return. They were decent and fine men, but eh, not for me.

One message, from a nervous, single Dad initially caught my attention. But playing phone tag stalled things. FINALLY, I tried to call again, a real person on the phone. His name was Terry. We talked many times in that week, realizing we had tons in common and finally met one evening in March after my son's baseball game.

We clicked, and away we went. Our kids were 10, 10, and 11 and got along great.
Christmas morning 1991, while the kids watched me unwrap a ring, Terry asked me to marry him!

On August 15, 1992, we stood in front of my living room window, below a balloon arch, our kids standing by our sides and 60 of our closest friends and family in attendance. It was the hottest day of the year. We said our vows, ran upstairs, changed into shorts and swimming suits and proceeded to have a big BBQ swim reception in the backyard. Perfect!

We fell in love and that's all that mattered - nothing else.
Yes, it's been 16 wonderful years, and worth every second.
Thanks Pennysaver and Terry!

Love you, T.

Dr Seuss

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

Awww . . . one of my favorite children's authors, Dr Seuss. The thought of Dr. Seuss books brings a big smile to my face, and comforting thoughts of happiness from my childhood. I've re-experienced all that happiness again as I read these treasured books to my children and now again as I read them to my Grandson.

One of my favorites is One fish, two fish, red fish, blue fish. Oddly though, this particular book reminds me of my feelings of my CF - always feeling like a fish out of water.

I've always been considered 'so called mild' if there is such a thing, until these past 7 years. In the past, I tried to fit in the local support groups, education days and clinic social interactions but I felt out of place. I was usually the oldest and dealt mostly with parents of CF kids. Any other adults I knew got sicker and passed on.

Of course the parents wanted to know what I was 'doing' to stay so healthy. In reality, I had all the same regular medical routines that their kids were doing. I would feel guilty that their children were sick all the time and I was living basically a normal life. It actually made me feel worse to attend functions, seeing the very ill children. As much as the parents saw hope in me because of my age, I knew I was never as sick as their children and that we were in totally different spectrums of CF. I felt disconnected to the CF community, so I quit going to gatherings. Cross contamination continues to keep me away.

On the other hand, I didn't quite fit in the healthy, normal world either!!! A lot of acquaintances don't even know I have CF, which I feel is on a 'need to know' basis of who I tell or not. For those that do know, I continually minimize situations. I rarely talk about what I'm going through. When asked I hedge and hide trying to carry on my past of normal living. I'm certainly not one to whine and complain about my aches and pains. I even hide things from my very supportive husband because I sometimes feel like a basket full of problems.

My point is,  for me it feels very weird and foreign here.
Here meaning this site and this blog.

I have opened the lid of my box just by coming here, spilling for all to see. I feel the need for support and understanding from those in the know. I want to learn the latest and greatest from those who live it. And I believe I've found it.

I'm in the fishbowl, swimming with all the rest of you who call this forum home. Think I'll stay and float awhile.


Favorite Dr. Suess Quote:

"Be who you are and say what you feel because those who mind don't matter and those who matter don't mind."
                                                                                                                 – Dr. Seuss

CF is selfish

This was originally posted on August 7th 2007, on my other CF blog/forum where I don't post anymore.

*Jumping up on my soapbox, talking sternly & loudly and frustrated*

CF is selfish . . . because it thrives on medical routine.
That same routine consumes me from my normal non CF life.
And yet ironically, by faithfully doing same routine, it gives me more life in return.

By 9:00 am this morning I had already given myself 2 shots, 2 different IV's, took a handful of pills, 3 breathing treatments accompanied by Mr. Vest, and 10 minutes of Miss Acapella. Then repeat, repeat, repeat over the course of a day, every day. I switch to auto pilot and breathe, vibrate, dose, and poke. It gets tiresome, it gets old.

There are times I want to be rebellious, chuck it all and live one full day without one single medical device, drug or thought of CF. I would be heaven to have one CF-less day. I do remember having those days many moons ago before dx.

CF is selfish . . . because it takes over every room in my house.
I would love to have my closet space back. Boxes of home health products, drugs, vitamins & supplements, device instruction manuals and boxes. My fridge overflows with meds, waiting to be used. My kitchen cabinets and drawers house diabetes supplies, nebulizers both clean and dirty waiting to be cleaned and sterilized.

My computer desk shares space with my nebulizer, vest, acapella, and various odds and ends I use for treatments.

My bedroom, surprisingly, remains a CF free zone. Other than hearing my coughs every night.

CF is selfish . . . (and greedy) because it drains us financially.
It craves expensive drugs, equipment, doctor appts, procedures, home care, and outrageous costly hospitalizations. I don't even want to think about how much it has cleaned mine, my parents and my insurance pockets in 51 years.

But mostly,
CF is selfish . . . because it steals my time.
Time, precious time, I could be spending with my loved ones.
Time I could be working a real job again being productive and fruitful.
Time my mind dwells on my CF and could be better spent thinking of other things.
Time to physically being active, really active, like running, or skiing again.

Yes, CF is selfish, indeed.
Whew, got that off my chest, again for the umpteenth time.

*Quietly steps back down off my soapbox.*

Fungus balls are not my friends

My sinuses have been a nightmare for a year now. Plugged, dripping and constantly feel like I have a cold. I went to the ENT late last year for a surgery eval, he said they are open, surgery is not necessary, not yet. Well, this spring and summer along with wonderful allergies finally tipped me over the edge.

I knew there was no way I wanted to go on our upcoming trip feeling like this. I was coughing non stop from post nasal drip and blowing all kinds of nastiness from my little nose. I went to clinic for a new ENT referral. Instead I got slapped into the hospital, right then and there. Sinus CT and visual exams revealed I had 'fungus balls' growing in my sinuses. Ewwwwwwww, the visual picture in my mind of what a fungus ball looks like, is not pretty! The only way for them to escape is sinus surgery.



So the plan was to load me up full of ABX to prepare both my lungs and to rid some of the sinus infection, inpatient, with surgery to follow in 5 days. That was quick! It felt weird being hospitalized, just waiting for surgery, but I understood the reasoning.

Surgery was 7-30-08 at 1:00 pm, which went just fine. I was surprised that I only needed pain meds once, that evening. My biggest problems and discomfort followed within the next 3 days.

The surgeon used a gel/glue substance instead of 100 yards of gauze to 'pack' the sinuses after surgery. It supposedly cuts the bleeding and promotes healing. Well, I have to tell you, that as that gel, dissolved and melted, it went right down my throat. It caused me three sleepless nights, I mean NO SLEEP, because it drained in chunks. I couldn't breathe out my nose, because it's packed, and my mouth breathing became unbearable with severe cotton mouth from the gel. It finally cleared enough after 3 days that I could squeak out a little air from my nose, giving me some relief and much needed sleep. The docs also told me not to blow my nose for a week, which was torture.

But now, alittle over 3 weeks out, I'm feeling much better. I can actually feel air going way up into places that have been clogged for years.

I guess I've been very fortunate to have dodged the sinus bullet this long. I had severe allergies as a kid, and 5 sinus surgeries in my teen years pre-CF DX. And then, like magic as I entered my 20s the sinus problems disappeared. Like clockwork, the sinus problems reappeared as I turned 50.

I have my own theories, thinking with me, that hormones play a big part. The first time were the puberty years and now the menopausal years. Hmmmmmm, a connection perhaps? I've mentioned it to my Doc, but hey, there are not very many CF cases like me in their 50s to compare to. So who knows?

I just hope that this sinus surgery will be the last for awhile. I sure wouldn't want it to create a flurry of subsequent surgeries like before.

In the meantime, I'm enjoying just to breathe again.

Where do I begin?

I finally decided to start this journal, rambling about exciting life, boring life, past life experiences, my life with CF and everything else in between.

I consider my life a journey, not knowing when or where it will take me. I enjoy what I can along the way, savouring the good parts and dealing with the not so good to the best of my ability. I take a day at a time but always plan for the future with goals in mind.