IV's, O2, and Teeth?

Today was a day. I woke up to chest x-ray transport. Did that. Went to see the oral surgeon for that "spot" they found on the x-ray. Turns out the tooth and 2 year old infection that were the gray spot needed to come out now, like in 45 minutes... So we did that. He had to scrape the infection from the bone and remove a cyst--All in a days work and 5 stitches later I am in pain.  My kidney numbers are high so my vanco can only come Q24 and my fortaz is steady. I saw the GI today and go for another endoscopy Monday and ultrasound tomorrow. He thinks I have peptic ulcer disease and a possible stone in my bile duct left over from when I got my gallbladder out-- if so they'll remove it wednesday.

This is simply ridiculous. My pft's are about 27%-32% below my baseline still so we're going to treat until they improve.

Marrow tests will be back on Thursday of next week giving us further direction and I also learned that I don't make antibodies... right... no fighters in there.
I'm sorry this is so rambley, but I am ultimately very rambley right now.

ENOUGH OF THE FEELING SORRY FOR MYSELF, on to other things:

While admittedly I did not get up at 4 am to watch the royals marry, I did get up at 4 am to use the restroom and heard a number of other patients hooting and hollering... so I was kind of up because of the royals, but really not for them.
I was able to not watch royalty marry but feel like I did because Jen V and Sara T pretty much kept us all up to speed--- which was entirely the smiling point of my day-- that and when a friend surprised me with coffee and nitza came to play words with friends for a few hours.

So tomorrow is the big ultra sound and hoping the kitchen might finally have gotten the food I don't eat order out right.

All That I Know Is I'm Breathing

"The storm is coming but i don't mind. 
People are dying, i close my blinds. 

All that i know is i'm breathing now. 

I want to change the world...instead i sleep. 
I want to believe in more than you and me. 

But all that i know is i'm breathing. 
All i can do is keep breathing. 
All we can do is keep breathing now."
--- By Ingrid Michaelson


Sometimes ending up with an unexpected stay on your local CF ward is, well, a blessing in disguise I guess. This struggle of all of the few health things going on is just kind of getting too much for me...Reinforcements were needed- and reinforcements we have.


I have been walking through a few days now with my eyes have shut pleading for wakefulness... I guess every plea cannot go answered, or perhaps my state of wakefulness what an answer to something that may have been much sleepier...


So we'll tackle the lungs, the blood, the mouth, the stomach and see where that takes us... In a medical breakthrough today I learned that my body is not creating antibodies.  Of he 14 things the doctor tested I had 0 for all 14. So that's really not good... but at least we can address that one and take care of these isues a little bit at a time.
I'm fried, tired, jumpy, and nearing delirium.. so I'll write more tomorrow.


Love Love Love (expression borrowed from Sarah Jones  )


Until another time.
-Tara

The straw

I'm so frustrated and fluctuating between tears and more tears. I've been having a pretty decent amount if pain for about 10 days from a gastritis flare up-- it's like a catch 20--- I have Cf so I need iv anti biotics and steroids often, they reek havoc on my stomach so much that it feels like a power sander in there-- I don't drink, smoke, do illegal drugs etc. I take carafate, omeprazole etc for my stomach but the pain feels line I'm going to die st times-- I can't focus, and I'm lacking motivation so I get down on myself and spin into a nasty cycle--/


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Settling dust

Yesterday was a day full of busy-ness and family, church and reflection, too much candy and a whole lot of love, running around searching for Easter eggs and squealing with laughter. Yesterday was a whole big full day.

Alejandro and Mommy before church

Ale getting his Easter basket at my mom's house

Ale looking at all his goodies

The littlest easter bunny

Mom watching Ale opening his basket

Nitza and Grandma Gert chatting

Ale and my mom playing Angry Birds

Being silly with the iPhone

Super cuteness

The annual Easter Egg Hunt. Tara racing Ale for Eggs

The hunt in full swing

Hunting

ALe with his bag of eggs

Ale and Tara searching for eggs

The cutest most dignified ever egg find

Nitza in red

Ale running for more eggs

Grandma Gert with Her Eggs

More running

Nitza pulling up the rear

The lone Nitza still searching

Tara will eggs

Mom, Ale, Tara

Ale eating dinner

Ale and Mommy

Cuteness of Ale

Ale and Grandma Gert

Nitza and Step Tom drinking something

Ale blowing bubbles

Aunt Erin and ALe

The little bunny Ale

It was amazingly beautiful.

Today the dust settles. I am so tired. Ale is at school and Nitza is at work and I want to be productive, but every bone in me hurts. Tomorrow morning I go for an upper endoscopy to see what the story is with the stomach, Wednesday I go see the endontist for a gray spot on an x-ray and then to the oral surgeon... and today I realize that yesterday I just let reality go and I mustered up all of my energy so I don't' have any left today. There are a number of irrational and very real things that are causing me anxiety. It's rainy and gloomy.  I will sleep and see if that restores any energy.  Maybe I need to use it more sparingly. I don't know.  I am tired of medicine and the medical field. I need a break.

Until tomorrow
Tara

Adventures with Alejandro

I am blessed beyond belief every day that I am alive...I feel that in my being.

Thursday night ale started to sound like a frog. His voice was crackly and his nose was extremely runny and he had a tiny fever... He had a tough night coughing son we kept him home from school on Friday, which I felt good about anyway because it was good Friday and we've used Easter as a time to really talk about god and Jesus with him. He understands that Jesus was crucified and died for us to live. He is also a very logically thinking boy so he's asked a lot of questions and requested a timeline of holy week. He's got the basics down. Jesus died on Friday, went to heaven on Saturday and rose again on Sunday...so... We went to target and I got meds and a new chapstick as well as some groceries and target was busier than Christmas -- we were in the checkout line for a while discussing now it was earth day and the things we do to contribute tomthe earths well being etc when ale looked a little stoic and announced in Avery well articulated voice that YES it was earth day but much more importantly it was the day that Jesus died and thAt was much more important than earth day... Well said little man... So naturally everyone turned and gave that " this child knows too much" look at me and I smiled proudly for my boy...

We've had a great few days together....on Friday night we took him to his first ever movie in a theatre tom see rio. He frightens easily and we were a little bit concerned but he handled the whole scene very well, only pointing out the "bad" words I.e shut up and stupid. He also picked up a few funny lines so it was all worth it.

Today nitza got her hair cut etc and nails done so it was a long day for ale and I at the mall. He and I went and got him his Easter outfit and we were checking out when he professed that he needed to ask me a question. He asks a LOT of questions, but he always prefaces it with, "I have to ask you a question." So anyway, he says, "Tari, is swear a bad word?" and I paused, thinking that it was an impressive question and wondering what really goes on in his head... So I said,"No Ale. The word swear is a word to describe a bad word." That sustained him for 3 seconds.

I found myself very grateful for our ongoing conversation that starts when he wakes up and breaks only when he talks to Nitza and continues when he talks to me.

The funniest Ale-ism of the day was in the car when we were all leaving the mall. He asked if God made earth first before trees. Nitza said that God had to have made earth first before trees because if trees came first and there was no earth, where would the trees grow.  He was pacified by that and asked how long it took God to create the Earth (Ale has been obsessed with God for the last few months) I started to tell him the story of creation... One the first day.... and he asked if all people knew that God created the Earth and I told him that there were many schools of thought.. that scientists believed one thing and christians believed another... he paused and asked if he could go to that school when he was bigger...

So now the boy sleeps excited to go to church in the morning and then head north to my mom's and have an easter egg hunt and get his easter basket from the easter bunny-- we decided to have that be a special grandma's house kind of thing and keep the easter bunny stuff at bay around here...
My life is amazing.. my heart is full and that little boy just makes me smile and think and pause in moments when i need it most...

I hope never to forget that one ALWAYS can run faster in a new pair of sneakers... that even when someone who is 5 promises to carry his juice, I will end up carrying it... that when I say I will give him a kiss when he's asleep and I am off to bed I'd better not forget, because I will be asked about it first thing in the morning... that 5 is not too young to handle big truths... that streudel is a breakfast food because it does have fruit in it... and that there are never too many legos.

Happy Easter to you all.. I will post pictures of our day on Monday and I have a week coming up full of medical procedures for a change < insert SARCASM here> so I'll write as I can.

Be well
Tara

Thankful Thursday

Yesterday I went for the bone marrow biopsy and it wasn't painful. Today it's sore but the procedure went fine. I have an appointment to see him on May 4, 2011 for the results. It takes two weeks. Nitza stayed in the room with me while the did it and that was a huge comfort. Last night Ale insisted that I wear this bandaid:

And THAT made it all better.
Thank you so much to all the folks who have sent me good wishes.... I truly appreciate that.

I cannot exercise until tomorrow so I'm a little stir crazy.

I'm really looking forward to this weekend. I am excited to go up to my mom's house with Nitza and Ale. It's always so fun!!

I feel so truly thankful today for Nitza and her willingness to do anything so I feel relief and comfort. I feel thankful for Alejandro who always puts life right back into perspective seemingly just when I need it. I am thankful for my mom and Tom who answer the phone every time I call and who call me just to chat. I'm thankful for my treadmill and my beautiful home.

Worries and Worries and Worries, Oh My

Tomorrow morning I am going for my bone marrow biopsy and lymphatic tissue removal for testing. I am scared. I don't like to be scared... but I am. I have a highly recommended hematologist/oncologist and it will yield answers to questions we've asked ourselves over and over for the last number of months. I will definitely update tomorrow... Yesterday at a routine dental visit they found a spot on an x-ray that I have to go see an endontist about and then an oral surgeon... seriously... this stuff is kind of becoming comical if it didn't give me such a stomach ache. I've always been told that God doesn't give you more than you can handle, and I'm not certain that that's true, but I know that I have a solid network of friends and family that can help me handle whatever it is that gets thrown my way... that I know for sure. Nitza will be with me and that gives me such a warm sense of security... I feel safe when she is near.

I am supposed to have a PFT this week to see how the lungs are rolling. I have a cold, I know you are all surprised... and they just want to be sure nothing is growing...

I am looking forward to this weekend. Our trio is going to see my family for their annual easter egg hunt and it will be great for the little cousins to play and to see my sisters... I love my family!!

It's so nice to have a life with things to look forward to... waking each morning. There are some circumstances workwise in my life right now that are difficult to swallow, but I'm grateful... for what I have in my heart and for the person I am.

Until tomorrow...
Tara

Always Something it seems

I have had gastritis for a long time. It flares up awful every 6 months or so and I admit I drink coffee. I could subsist on coffee. I love coffee.... anndddd I'm really not supposed to drink coffee... at all, ever. So I'm not a great patient in that I understand fully the consequences of drinking coffee and normally I can maintain the delicate balance, but I'm at home on STD for a bit until my PFT's stabilize and the bone marrow stuff gets worked out so I've been drinking perhaps a little bit too much coffee... at any rate the pain started 2 nights ago... and Ale worries so I tough it out as best I can...after I brought him to school yesterday I came home and sat for a while and realized this was not a tough it out situation. I called the doc and went to the ER and got treated... good ole pain meds, Zofran, 4 liters of fuid and a bag of Nexium. After 9 hours.. good to go... I do feel a TON better.  I will have to have another endoscopy. I have them every 6 months or so it seems just to make sure that the acidic spots on my stomach lining haven't started bleeding.. so far so good... and here I sit drinking coffee.. I did put more milk in it this morning thinking that the milk might be helpful (my poor attempt at justification...)

It just seems there is always something sometimes... but we roll with it... 

While in the ED after explaining my immune system problem, which they already have in the computer and CF, they put me in a room with a guy. This guy admittedly smokes 2 packs a day (kind of like me drinking coffee I guess) and he has full blown pneumonia. The doctor told his wife, "you know its contagious right."

WHAT?!?!?!? So I pressed the call bell and the nurse came in and I explained as quietly as I could on pain meds my concerns for the contagion factor... she said, they curtain prevents droplets... WHAT!?!??!?! and she walked away... so.. all that being said, we'll see how it goes in the next week. I am prone to catching anything, but the disregard was frightening. I know they were busy and I hate ED's but the doc thought the best thing would be to get in there and get the treatment in an attempt to control it until I could get into his office... argh...

So its Saturday morning and Nitza is home and I love that and I'm so grateful for beauty... it surrounds me.

Thankful Thursday and Little Boy Haircuts

After I picked Ale up from school yesterday we went to pick up some prescriptions for me (a common occurrence... Ale and the pharmacist George, are great pals) at Target. Going to Target, as most people who know me know well, is bliss. I can never go for one thing. I have to do a full Target "walkaround" in the same order each time. So, all that being said, we got my meds and headed over to the new grocery section (which I now love but didn't at first because it was change and I really like routine --No Change). Ale and I debated the pros and cons of Welch's fruit chewies vs the Target brand... He won, as I had no solid defense for the Target brand (which I usually buy) and Alejandro is a boy that loves facts. We went to books so he could look at a lego book and a Chuggington book. I folded (I usually do) and we bought a Chuggington video. It's our first. We own every Thomas video (and engine for that matter) so Ale wanted to try Chuggington. We went by clothing and then digressed and went and bought a clipper set for his hair. The boy's hair is like velcro and for the sake of his preference I decided I would give him a cut.

We popped Chuggington into my Mac and I cut his hair. 

This is the after picture which I took today:

Pretty adorable. (I'm very biased)

These are the curls before:

We had fun and tomorrow is picture day. 

I'm feeling grateful for my family.. my Nitza and Alejandro, my mom and Tom, Kelly, Nate and Oscar, Erin, Mike and Gram...

My life is full of abundance and looking into the eyes of this boy remind me of that every day...

Bone Marrow Biopsy

I saw my hematologist today, who is working with my immunologist and the decision was made to proceed with a bone marrow biopsy and aspiration of lymphatic tissues. It is scheduled for 4/20/2011 at 10:15am.  I'm scared, but believe that we'll finally get answers to some abnormalities that have surfaced over the last bit of time.  I've been sleeping 15 hours of 24 for the last few days. I'm just so tired. It's only gotten worse.

As promised yesterday, here are some photos:

 Nitza and I 

Nitza and I

 On the left the Caribbean Sea on the Right the Atlantic Ocean

 beauty

 Nitza

 The adorable sun hat

 Grenada

 Happy Girl

 Tobago

 Tobago

Me asleep

Gratitude is Everywhere

I'm not in the hospital. I have had the good fortune of having a doctor who encouraged me to not be reachable for a week. Digitally check out. Enjoy a beach. Find my breath. We did just that.  Pictures will follow (tomorrow maybe)--
It was beautiful to be with Nitza for a week sans her blackberry, our iphones and any real connection to stress. I took all oral and inhaled steroids, did treatments and still struggled to breathe at times but laughed, relaxed and just loved being together.

We were on a very very poor island on Thursday enjoying a spectacular view from a private beach. Nitza asked me to get her a sarong at the local beach shop.  I did so happily. I was the only person in the shop with the short haired shop owner. She offered her island expertise and I chose a red flowered sarong. She asked me if I needed instructions for putting it on. I explained that it was for someone else and that by the time the instructions reached her they would be long lost, so it was best to leave life as is and just pay for the sarong.

As I handed her our agreed upon cost, she froze, staring at me. She said, "You have port." I nodded. She still did not move so I explained that I had a lung disease and was often on IV antibiotics. Her eyes saddened. She reached up with her left hand and pulled just slightly down the right portion of her shirt. She revealed a portacath, severely infected with a hole the width of a wire clothing hanger on the side of it.  She explained that it was infected... I nodded. She told me she had cancer and was receiving chemotherapy through her port. The infection haunts me.

I asked her about the process whereby she receives her chemo and she explained that she got it in a walk-in medical clinic on her island of about 35,000 people.  I feared that the infection would take her life.

Her eyes had begun welling up with tears. I reached out with my left and and held hers. We stood in silence for many moments, 2 women, ill, who live thousands of miles apart hand in hand. Another patron walked into the shop and we quickly dropped hands. Our eyes stayed in sync. I told her that I would pray for her. I told her she would be well. She told me I was beautiful and that I would live to be one hundred and ten.

I am grateful.

Flying dog ale

I don't try to be snobby about beer, I just am. I just popped 4 steroids and de died to have a beer-- the roid rage is killing me and none of my pants fit so I'm sitting with black sweats waiting for nitza.

I decided to have a flying dog ale brew called raging bitch because really-- it's where its at--

Breathing sucked today and it's making me panicky so then it sucks more-( I just realized how incredibly positive i sound)-- I'm scared and expressing that fear isn't really what comes the most naturally

So here i sit.

I'll be off the map for a while. I'll let you all know when i return

Pray for my friend Corey

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