Memorial vacation!

I am back from a fantastic vacation! We left on Friday and came back yesterday, Tuesday. We had to first attend Casey's sisters graduation, and party, then we headed out to Murphys.
Saturday was a day out on the lake on the Ranger. WE CAUGHT FISH! Mucho fishies. My mother caught the mother of all fish (hehehe, pun intended). We didn't weigh it, but it was large, I would guess a 5 pounder. The most remarkable thing is that it got IN THE BOAT. My dad helped by tackling it. It was a great exciting thing. I caught a bunch that day, and Casey probably pulled in the most. It was a great day! After we got off the lake at about 730pm we picked up pizza and beer and some figgy sticks. We chowed down and it was fantastic. Figgy sticks are these amazing cinnamon rolls with frosting that are delisious with beer.
The next day we took a day off of the lake and had a Picnic at Indian Rock Winery (on our street). My parents know everyone now, so it is fun to know people...They had live music, tri-tip, potato salad, and free wine. We drank and ate and relaxed in the sun. This whole weekend the weather in Murphys was only about 83-85. It was perfect! We walked over to the indian rock pond, where they have GIGANTIC trout. I realized i had had a bit too much wine, and then we proceeded inside to try out some more. I had to stop and start drinking water since I felt a little tipsy. We hung out over across the streed at the Barn, which is a little store that our friends in Murphys own. It is such a cute place with art and fun stuff... They are having a gopher problem and the new thing is to chew up gumballs and drop them in gopher holes to take care of the problem, so I offered to do the chewing. I can't resist candy! That was fun, but when you chew 20 gumballs your jaw starts to kill. After all this we headed to downtown and did some more wine tasting (Casey drove me). We came back and had BBQ hamburgers for dinner. I did a treatment then passed out. Drinking in the day is very tiring.
Monday we went out on the lake again, and caught more fish. I caught a few, but not as many on Saturday. My dad was the kingfisher that day... he kept pulling them in. The fish I did catch were decent size, so i was happy with that. It is so nice to hang out on the boat all day. It is nice to soak up the rays. We got a good ride in, it took about 20 minutes to get to the fishing spot. Nothing beats going 45 mph on the water... I LOVE IT! We had an amazing encounter with a bald eagle. He sat on a branch, and we trolled around on the water and got to admire him. He was probably 20 feet away. We got some great pictures, which I will put on later... We also saw a snake swimming across the lake, my mom thinks it was a rattler, which freaked me out. Gives me the chills, but it was cool to see. It was a great day!
It was nice to get away from all the loss, and just get a vacation. My lungs did well, and i feel good. usually I feel pretty exhausted after vacation... but i feel good.... i still need to rest, but i am not worried about crashing this time...

Do a little dance

Do a little dance, make a little noise, MOTHERS COOKIES ARE COMING BACK!!!!!!!!!
I can stop wearing black now....... and crying myself to sleep.
http://www.new.facebook.com/ext/share.php?sid=97781431353&h=ssYD_&u=v8X11&ref=nf

Time goes by....

I am sitting here thinking about how amazing time is. Sometimes it flies by, when you are enjoying yourself, or have a million things to do, and can't get them all done in a given amount of time, or it just slowly ticks as if life will never come to an end. I am feeling somewhere in the middle right now. This morning buzzed by, but now it is going slow, as i don't feel so hot. This weekend was supposed to be fun and productive, but it turned out to start out fun fortunately but that didn't last long. We had our friends Kristy and Ben over for dinner (yay) and we ate and watched a comedy DVD, which was great fun. I was really happy by body held out for it. Then right as they left, BOOM. I started to feel like crap. I know the reason i felt like crap, so don't go reporting me to the CDC for Bacon lung... I took my first dose of Actonel, for my bones, which I was hoping would heed better results than the fosamax, which I was severely disappointed, did not come to fruition. I got a fever at about 11pm, it went away by 1pm but came back with avengance at 3:30am, to shakes, chills, nauesa, tachicardia, and oh yes, puking. I think i have thrown up more in the past 2 months than I have my entire life. I need to stop making this such a habit. Well, anyway. I had to deal with that until 530am. I finally fell asleep. Then about 11am i woke up with it again, however not as bad. Anyways, to say the least it wasn't fun. Then on Sunday I had this weird eye pain, so i could only look straight ahead, then last night i developed this weird pain in my foot, inside my bones. Not fun at all. Well, I am just taking it easy now, trying to feel better. My body feels like it was hit by a truck. I am not sick anymore, but I feel like I need to recover from all of it. So that is what i am doing. My wonderful mom offered to pick up my groceries for me today, so i get that help, then i am going to make fresh pesto pasta for dinner and artichokes. YUM. I guess that is all for now. My mother will be here shortly with my delivery... just gonna waste some time now.... i mean rest...

Life after they die

Well, my life feels very strange now a days. I only have one living grandparent, who we rarely see. So i am feeling like my family has shrunk tremendously. It is strange... there are less people in the world now who love me. What a weird concept. My grandmothers were so generous and always wanted to help me and always loved me, and they are not there anymore. I have found myself wanting to call Grammie many times, as I have been going through her stuff. I want to ask questions, where is this from? What do you think of this? Is there anything you want me to have? Where do you want this stuff donated? you know that restaurant that we went to, where was it again, or did it close? The amazing thing is that she left so much of her poetry and journals, which reveal a lot about her, that she never shared, but we always assumed. yesterday I found her writing about her mother, and it gave a description of her, so her grandchildren could know her. How special. she wrote poetry for different grandchildren and different children. Alot of it is sad, and revealed what great depression she suffered through, and never revealed. The others are beautiful and skillfully describe her observations and thoughts of flowers and the outdoors. It is funny because she wrote ALOT, and stuck it in everything. If you open a book, it is bound to have something fall out of it. In her calligraphy stuff, i found a load of writings. She also began to label things for specific people, mainly for my mom. It is like she is able to speak to us from beyond, but at the same time, it is so hard not to discuss this stuff with her. There is a connection with her that is deep and strong, which she didn't allow when she was alive. she hid all of this from us. She didn't want us to know, but she kept the writings so we would know one day. Without the difficulties of being a human, and all of the projections and denial, and fear that we have, we have been able to connect with her spirit. Especially for my mom, who is just soaking up all she can of her mother. I see her experiencing all that she wanted to for her entire life, and she finally can get to know her mom in the way she always wanted. It is a very healing experience for her, and I am so glad she recieved this gift.

My mom is going through the grief process hard right now, and it will continue for a while. I have been able to help my mom keep organized and deal with some of the details of all the stuff that needs to be done after you die. It makes me feel so good to help take care of her. She has done so much for me when I don't have the energy, and not i can finally give back to her.

i wanted to comment on what I said earlier, I do know what my grandmother wanted me to have, she gave it to be before she died. When casey and i had our committment ceremony, she gave me a necklace my grandfather gave her. She knitted me a blanket years back, that i keep on my couch. She bought me my car when i started grad school. she helped pay for my cleaning lady, so i didn't do too much and could take care of myself. She bought my fridge when we moved into our condo. She made my life so much better. She was always so proud that when i cook I wear an apron, because people don't do that anymore... I took her two aprons she had and I have been wearing them while i cook.... She wants me to remember her, and love her forever, that is what she would want.

Goodbye Grammie

I haven't posted for a while because things have been crazy since my grandma broke her hip. She went into surgery to fix it and she went through the surgery just fine, and was faced with starting rehab and physical therapy. In the hospital she was finally able to get under some pain control from morphine, due to the hip, but also eased her chronic pain she has been experiencing. For those of you who don't know she was suffering from severe arthritis, and debilitating headaches, and she hadn't slept much in months. She was never able to take anything for long enough to help because she was so sensitive to meds. Well, this helped her to get relief from a very small amount of morphine, and wednessday night she went to sleep and didn't wake up Thursday - they couldn't arouse her. She just lay in bed snoring away, they did physical therapy on her while she was out of it and everything. It was hard to watch. When she didn't arouse from such interaction they checked her vitals and her Oxygen sats were at 79 on 2 liters of oxygen, (not good, you want at the very least for it to be 90). They were able to get her sats up with a oxygen mask, but she is DNR and we did not want to do any life support measures. So the doc came in and we talked that this was probably her exit. he explained to us that when someone is in such pain for so long they are in a struggle with life, and it engages them to stick around even if they don't want to. Once you get under proper pain control it can release them to let go. Well, she let go alright. After that talk, at about 4pm on Thursday, she left this world at 550pm on Saturday. I was able to be with her for about 7 hours on Thursday, 3 on Friday, and a few minutes before she died on Saturday, then I sat with her, my mom and my sister and my uncle Mike for a few hours, until she was taken away. As strange as it may seem, it was a beautiful experience to be with my grandmother as she left this consciousness. I knew the minute I saw her Thursday that she was leaving. I actually had a dream (i can't for the life of me remember when it was) that my grandma fell while walking to the front door of my parent's house, and i ran out to her, and she died. Well, that is basically what happened. She fell at her front door, and soon after died. Weird how sometimes we psychically know things. I was able to talk to her, and read to her. I read her a passage out of Thic nhat han's book on dying. She loved his writings. I have collected a few of his books from her house for myself. She loved the buddhist teachings, and i felt that she would have loved for me to read to her, as she was a veracious reader. I was able to say goodbye, and she never got to see my new haircut, and i placed her hand on my head and had her pet me, then 5 minutes later she left. At the moment of her death my mom's cell phone rang, it was my uncle, and also in that same moment my aunt walked into the room. So a representative from all of her children were with her when she died. We all had our hands on her, and she just slipped away peacefully. it was quite an amazing experience. It was so refreshing to know she is not in pain. there were a few times when she communicated enough to let my mom and aunt know that she wasn't having pain. I am helping my mom clean out her apartment. It is going to take a while for it all to sink in because it happened so quickly. But we will have a memorial for her on mothers day this year. I am just so glad that she is out of pain and who knows what happens when you die, but my wish for her is that she is with my grandfather. She was never the same after he died. I just hope that she is apart of nature, in the wind, in the birds, and in the flowers....

Our family needs a permenant room in the ER.....

Well, another one of us ended up in the ER. My poor grandmother fell this morning when she was getting her newspaper and she broke her hip. My mom had come to help me with my medicines this morning, since Casey is taking a mini vacation in the snow. She came over and started my IV at 7, then left about 745 i think, (i was sleeping so I don't know exactly, but I assume) She told me that right after she got back, she recieved a call about my grandma and she rushed over there, and she was taken by ambulence to the hospital, where they determined her hip was really broken and they had to do surgery ASAP. So my grammie went into surgery at noon, and survived it very well. Last i heard was that my mom was about to see her in recovery... my poor grandma. She has been having such a hard time lately, this is the last thing she need! I wish her the strength to stay strong and deal with the pain and discomfort. Please keep her in your mind with healing thoughts...
Other than that, i am doing much better. I have a clinic appointment tomorrow morning to assess the situation and see where my PFTs are at. We will decide if i just need to finish up the two weeks of IVs, or continue for 3. Not sure what will be the best yet, but I am thinking probably continue for 3 so I can get all I can from these ivs. I will let you know.
Another good thing was today i went to take care of the Cats, and i felt very productive. I did a lot and learned that Tuesdays would definately be the best day for me to consistently go. They need someone there, as not many people come Tuesday afternoons, unlike fridays when there were like 10 volunteers, which makes it not very interesting to go. So I plan to continue with Tuesdays from 1-3.
I am excited because my Casey comes back tonight! Hopefully when he takes back his skis he will pick up a phillycheesesteak for dinner! YUMMMMM..... there is this place in San Jose, right next to the ski shop that is excellent! So i am excited for that. Well, I should attend to getting another treatment in, even though I feel like I just did one... the work of a hard core cf patient....

Wish me luck with the PFTs tomorrow...and wish my grammie lots of healing....

The Beautiful Sick People

I edited my poem...

The Beautiful Sick people

I am smiling.
My eyes are bright.
You see, I have the fight.
I want out!
I want to live my life.
I look healthy.
Petite, skinny, young: a society’s definition of beauty.
Oh, but look at me
I can eat and eat and eat and never gain weight
Truly the envy of my friends and family.
I come to clinic
I do what is expected of me
I work hard
I am the perfect patient.
Inside I am rotting.
Even on a good day I have crackles, I struggle to cough out mucus
to not loose my breath and need oxygen.
My blood sugar is now a problem
I must take insulin.
I must eat
I must watch what happens
I must always think about what is going on inside my body.
I get on the scale, 119. DAMN.
I lost weight.
All I did was try to eat healthy foods like fruits and veggies,
I just want to be normal.
I take my blood sugar, 60. DAMN.
I have to drink juice so I can stop sweating and shaking.
I blow into my pft machine. 1.13. GREAT!
My numbers are up, but it is not as good as it used to be.
My life is shortening as these get smaller.
I put my finger in my O2 sat meter. 94.
Eh, could be better….
I put on my vest,
Cough, spit, check the color… light in color, GOOD.
Small amounts of blood, DAMN.
I burp, vomit comes up, GROSS. I hate that part.
My bones are thin. Taking medicine for post menopausal women.
I feel like an old lady.
The stomach starts to expand and swell. Are you pregnant?
For just a moment I pretend, a pregnant belly, that won’t be.
No, just constipated.
Must take golytlely. The pain of intaking gallons of fluid to push out stuck poo…
GROSS.
What happened to my dignity?
What happened to my beauty?
It is lost to my CF.
Yup, Just farted. GROSS AGAIN.
When you look at me
I am dressed well
I smile
I strike up a good conversation.
I am a charmer.
I want you to like me. If you knew all this gross stuff would you judge me?
So I make you see the beautiful person on the outside.
I can even fool the doctors, sometimes.
Some wish they could be this skinny.
They wish they looked as young as me.
They value my youth.
I still have a twinkle in my eye, and a joke to tell, BUT
Beauty on the inside?
My bodily struggles are hiding, not visible to you.
But if you listen, you will see that I am a mess.
Rotting on the inside.
Just a day in the life of a BEAUTIFUL SICK PERSON.

Can't complain too much!

I just wanted to add a couple pictures I took while I was in the hospital. Casey brought our new camera, and we had a little bit of time to practice some creativity. A guide to Anna's Stanford garden... The first picture "The florabunda" I have named it this because i felt like there were so many flowers and flowering trees that it was like an explosion, a FLORABUNDA! The Second picture "It's never lupus" This is because I always call Lupin's Lupus.... and because House always says "it's never lupus" so, there you go, "it is never lupus". The Third picture "easter" reminds me of a perfect scene at easter time. To me, and I think my sister said so too, it just looks like easter. There you go, my creativity in a nut shell..... Enjoy!

So glad to be home!

I have been home from the hospital since Monday late afternoon. Yesterday was clean clean clean day since i have been in and out of here for about 1 1/2 weeks. This crazy hospitalization time was enough, i think i will take a break from it for a while ;) That is my plan at least. Anyways, I realized how sedentary I have been the past week since with my belly I could barely move.... And once I was in the hospital starting my IVs, I didn't move a whole lot because I had to be in my room all the time for treatments, infusions, and the many medical visitors i get throughout the day. So yesterday, running around taking stuff to the garage, cleaning the cat box, walking around the house picking stuff up, going to the store, and then going to a humane society meeting was a lot of action for me. I survived though, probably thanks to the prednisone energy. Right now it feels so good to be home, I am sitting here typing with a Milton in my way, He sits infront of the computer everytime. No matter how annoying it gets, it feels good to be home! So now our house is all clean, and dinner is made, and I can relax tonight with my wonderful Casey. I made a pot roast yesterday, with my speacial recipe. YUMMMY.

New subject.....
Yesterday was my first experience at the new humane society. If i haven't mentioned it, they have built this gigantic "green" center, and all the animals are kept in habitats instead of cages. There are only cages where cats need to be kept for hospital stuff (so the pulic doesn't see any of it). It is really amazing. There is a dog park, and a cafe. It is a gigantic beautiful place. There is also a pet store. We move the animals over there in about 2 weeks. Right now the people are back and forth between the animals and the new center.... it is going to be a rough and interesting transition, but it is going to be so great. Their new goal is to go from 6000 adoptions a year to 10,000! The center is in Milpitas, and the drive is almost exactly the same amount of time as the Santa Clara location. There is even a huge volunteer room, with lockers and everything! So exciting. Also, because of the going green thing, they have made it a completely tobacco free place! YAY. We had our meeting in the classroom, a huge lecture room, that is going to be used for educating kids and the public about animals. I even believe there will eventually be doggie yoga. It is going to be a great animal community center for freaks like me!!!!

Anyways... I have issues with my own cat, mr. jack, he has eye boogies.... i gotta either get some stuff from Ellen (the woman who runs bay area cat rescue) or take him to the vet. This will be decided tomorrow i am sure.
I went to the nursery with my Mother dearest, and she bought me a spring present of a few flowers i can plant and put on my patio. I am excited to add color to the patio. The issue is that we have such a shady place, it is hard to get a lot of stuff that works well, but I think we found some great stuff! I am excited to get to that tomrrow. Such a sally homemaker i am! Well, i guess it is time to go and get dinner ready. Thanks for checking in!!!!
Oh yea, just wanted to report that I am being good, and am on track with 3 treatments totalled today thus far, and one more to go for a whopping 4! I am sticking to the regimine, gonna get super better from these IVs.....
wish me luck!

Hospital

So I am here again, my lungs didn't do so well without treatments, and i decided it was best to come in and get my IVs started again. I have been here since Thursday night. I will go home tomorrow, at least that is the plan. The good news is that my stomach appears to be all better. I still need to do some maitenance upkeep with it, but it is all clear again. Things are fine... just doing what i gots to do.... that is all for now, i am going to fall alseep i think....

Woah baby!

well, it has been an interesting few days.....  It all started Thursday night, I felt a tinge of pain in my belly, thought it was gas, and let it go.  It was still there friday, and I just kinda ignored it (probably a bad idea). Then friday night it got way worse.  I barely slept and we ended up going to the ER at 8am.  Casey took me in writhing pain along with a little vomitting.  Once the puking started, i knew we had to get to the hospital.  So we ended up in the ER and they took pictures of my belly, and we tried to get a hold of the CF docs... it was not an easy task.  CF patients often get bowel obstructions because of the thicker mucus and the inablility to digest food as others do.  Well, we were in a room and i got blood work and they started an IV with fluids.  I don't remember a whole lot else, since I was in so much pain and eventually they gave me morphine.  But I did a CT scan and my appendix was large so they came in wanting to possibly take it out.  The surgon came in and checked me out and realized that it was not my appendix, but they wanted to be sure.  FINALLY the CF Nurse practicioner was called at about 4 and I was moved to our CF floor at about 6pm, when I started taking the golytely.  I was in so much pain that putting in another gallon of liquid was horrendous.  I would drink and puke and this lasted for many hours.  I didn't end up going to the bathroom until 6am the next day.  FINALLY I started to move things around.  We thought that the movement meant that it was resolved, and i was allowed to go home after i kept food down and was able to walk the halls.... I came home and continued evacuating the system. This continued through Monday, and it got a whole lot worse on Monday night and I began to become bloated again, we almost went back INTO the hospital, but avoided it because there were no beds and I refused to do the ER again.  SO today I had an appointment to get an xray and be examened, they said i was still full of shit on the right side, and i had to do golytely again, but thankfully i was able to do it at home.  So here i sit, hopefully without any shit left in me, and i just ate some food, and i feel ok.  I am tentative, but i think things might be turning around.  I gotta go back for another xray on Thursday or Friday.  I am hoping I can get a good night sleep tonight.  I have barely slept in days.  the pain and the pooping and the lack of sleep and lack of eating is making me so weak.  So my goal is to sleep sleep sleep tonight.  I think it might be possible.  Wish me luck.  That is my exciting experience.  Sorry for being so graffic.  And also don't worry, during the whole event i found ways to make jokes and make light of the situation, but it was one seriously Mo-fo.  

Free Money

Today I got a free $50! I just emailed a research company, they called me back, we spoke for a couple minutes, and I signed up to be on a research panel, and now I get $50! If I fit into future research criteria they will call me to participate and I can make more free money! How exciting. I referred my mom and i might get another 50 bucks for referring her, and she will get 50 bucks if she fits in the criteria. How cool!!!!! It is for CF people or CF caregivers. If anyone else out there wants in and fits in the criteria, let me know and I can refer you and we can both get more free money!

HAPPY BIRTHDAY EMILY!

I wanted to send a shout out to my LONG time friend, we have been friends now for how many years? 16? That is a long time.... many good memories. also, it is Jon's bday and Ross.... I will never forget that as long as I live. Happy birthday Em! You are a great friend who I love a lot and I wish you the best year, full of hope, peace and love!

Colds are bad

Today was supposed to be a day of celebration and glee.... I was going to make dinner for my friend Emily. But sadly she called in the morning with a stuffy nose, and she said she thought our day was hosed. But despite this bad news, I had an idea we could use. We can still have dinner and we can do skype, it just won't be as big a hype. I proceeded to make dinner and delivered it to her humble abode. I ran back home and jumped on the computer, and we ate together from our own infection control locations. It was quite nice to make light of a situation that went sour. I am not sure why I am writing so wierdly in this post... some rhymes and some doesn't.... strange, but true. It was nice that Emily and I didn't feel blue. We ate salmon, risotto, salad and Leek and potato soup. It was quite a killer meal. Happy birthday Emily! Thank you for loving me enough that you protected me and had to change your plans. I hope you feel better soon! Love you!

Pirate

since I posted the last one, I felt it would be necesary to post this next one of Keifer Sutherland. I just hope that Jack doesn't follow in his namesakes footsteps.... Be careful out there Jack Bauer, Special agent.....click here

Tracy Morgan...

i am watching SNL, Tracy Morgan is the host.... We saw Tracy live once, he came to Santa Clara and then proceeded to drink at the Bar right by campus, and many people had stories of hanging out with him. I couldn't help but remember this youtube clip of an interview with Tracy that I can't help but laugh histerically each time I see it... I had to post it. lets hope this works... Click here

Lasagna

I made my first lasagna tonight, well all day today. It turned out fabulously. I found a recipe on the Internet titled, "worlds best lasagna" how could i go wrong? So I researched and read reviews, because i didn't want to just make any lasagna, I wanted the BEST one. So from 2000 something reviews, I decided this was the recipe. I got fresh ricotta and fresh mozzarella, and grated our fresh parmesean. It was amazing. It was a meat lasagna... and it was fantastic. I think the greatest addition in the sauce was fennel. It was FANTASTIC. I can't wait to eat it again tomorrow! If you want the recipe let me know....

It's a BOY!

Well, after about 3 months we finally have legally (well as legal as it can get) adopted Jack. We decided he couldn't leave our house and that him and Milton have bonded. I received an application for his adoption and I realized that we really were supposed to keep him, rather than give him to another family... so, we are now a happy family of 4.... Funny how far you come, from 5 days to a permanent home.... I would also like everyone to know that it was not by force that Casey agreed. It was a family decision and he was the final word, so I do not want to be accused of animal coercion. Thank you very much...... ;)

I tat I saw a puddy tat

Today was my first day of full on volunteering at the humane society. I had a great time playing with kitties. I checked in, got my keys, and headed to the back room, A kennels. I have heard that this room doesn't get the kind of attention the others do, so my goal was to visit all the kitties in the room. I cleaned all the cat boxes, gave them more food, and gave them love. There was a tripod cat who is declawed (so sad) and a very friendly but easily over stimulated cat. Other than that there was a super cute older kitten who immediately messed up his cage after I cleaned it. One thing I have learned already is that many cats are social eaters, and when you give them affection and pet them, it encourages them to eat, when otherwise they may not touch their food. I felt like it was a good day and I left a lot of happy kitties. When I left, I was completely covered with cat hair. I had to immediately put my clothes in the wash. I need to do that anyways, because you don't want to bring any germs from the shelter back home to your cats. So I gotta protect the Milton and the Jack. Well, I put in a days work, which makes me feel like I am giving back to society instead of just living for myself....so I am satisfied.

The third week

This was the third week taking fosamax. I was basically home free until tonight when I got a horrible visual migrane. I am talking NO vision what so ever. Half of Casey's face was missing.. I think he didn't loose it, and I think it was simply my migrane, but I was worried I had a one eyed husband. Tomorrow I am going to work at the humane society, I am excited because it is my first time one my own, and it is nice to have somethign to do outside of myself. Hopefully things go well with that.

My mom calls me a scheemer....

I have been thinking about posting info about what I do to save money. Sometimes I feel like I want to write a book about all the tricks I have learned from doing research and taking the time to learn different ways to save money. Well, today i had some good successes. I always go through the newspaper on sunday to find coupons. I also have learned that if you look through the safeway circular it has "super coupons" for a couple things every so often. More now I believe because people are financially in trouble and they want to encourage people to shop. I take my grocery shopping very seriously. I always shop on Mondays because the produce is freshly stocked, and very few people shop on Monday, and the sales are still going until tuesdays. So I had already done my shopping this week, but I discovered a coupon in the circular for 10 off if you spend 50 dollars. When you have CF, you eat, so i figured there is someway I can spend the money on things we need... I figured out how! hahaha... Now, i must say, the thing to making a coupon of $10 off is only to buy things you would be if you didn't have a coupon. SO, i had to figure out what to get. Casey is a coffee-a-holic, and Peet's coffee was on sale, so I got 2 of those. I use distilled water to irrigate the sinuses, so i got 2 of those (also on sale) I got 2 yogurts (also on sale) I got 3 waters to keep in the garage (I am buildling an earthquake emergency kit, which were also on sale) They also had the game apples to apples, which I have wanted (on sale 1/2 off for 9.99) I found a roast for almost half off, i got chicken to put in the freezer (the trick here is that you get chicken that needs to be used that day and they put a 30% off coupon on it and you put it in the freezer and use it when you want if you can't use it that day). So i got a lot of stuff... I think I got a few other things.. Oh yea, i got 2 honey mustards that casey likes and for buying 2, I got a coupon for a dollar off my next shopping trip.
Also, there was a super coupon for raisin bran for 99 cents. So i got that too. It was quite a trip. Essentially I saved $44 off the bill, and the way I see it is I got the game Apples to Apples for free! It was a good day!

Updates

Well, i didn't get through Tuesday as well as I had hoped. I developed a fever at about 230pm yesterday and felt like crap for a while. I had to miss my retreat meeting, I am sorry to my fellow committee members to those of you who read this. I am going to give the drug one more try next week, and hopefully I will feel better next week. I can't continue to take a drug that makes me sick for a day, because I have things to do, a life to live. I got kitties to play with at the humane society. Tuesdays are going to be my kitty day, so I need to have some free time not feeling too crappy.
Other than that.... I got my car into the shop to fix the recall out on it, I have been putting this off for too long, and I am very happy to finally have that done. Tomorrow it is going in the OTHER shop for a oil change, tires, and 30,000 mile check up. The car has to go to the doctor too ;)
Also, today is a great day... we finally closed our new refi-mortgage (well Casey did). We were able to take advantage of the drop in rates and luckily we closed at the perfect time and got a rate of 4.85 which is amazing. We were very happy about it. To have it finally close was quite a relief, because now loans are so difficult to get. We applied for the loan on Dec 23rd, and it is now Feb 25th.... how crazy is that. Just glad it is done. So that is my update....

More pictures

Just thought i would post more pictures from the hair experience.....

Follow up

Sorry I didn't post more about the haircut sooner.... I was exhausted and needed to rest. I am still liking my hair, but i must say it isn't as fabulous as when it was done in the salon. My curls are tighter than i would like, but i am working with it. I have worn it down everyday since the cut... so that is an accomplishment for me. It is amazing how i feel more comfortable now than i ever have with my hair. It is good, I am embracing the crazy.
Friday was my last day of training with the cats at the humane society. I did my mentorship and now I am able to go play (and clean) the cats at my own leisure. YAY....
Tomorrow i have to take fosamax again, and I am hoping that i don't have a reaction. Let's cross our fingers for that one... other than that we are just ending a normal lazy weekend.

AFTER!

This is the final result! I love it. i got my hair shaped and highlights. It is also all about the products they used. I am really excited and really tired from the day... I will post more tomorrow...

Before

Well, finally we made it all the way to SF to Madusalon and got our hair cut!!!! I had my appointment with Adrian at 3pm, and we ended at a little after 6pm. It was a great experience, but I am tired tonight and I just wanted to post pictures and I will write about it later.... I figure you all will forgive me, all you want to see is the pics....
Just to explain, you know all of the commercials where they do before and after shots? I wanted to take some drastic before shots... so enjoy and feel free to chuckle. These are both before pictures (one a little more realistic than the other)

Good to go....

Ok, I made it through the night. i didn't want to get too excited about getting my hair done today since Monday night was a dud. So I am feeling good and getting ready to go. Our appointment is at 3pm, so i got to sleep in and have time to do a little before the appointment. Ok..... I am excited... it will be a whole new me! YAY! I will be back when it is all said and done!

Pictures

We got a new camera, I started to play with it today... it takes great pictures... I can't believe Milton actually shows up on camera!

Hallelujah!!!!

Well, my body never ceases to amaze me. After a day of sickness, I am fine, just fine. No fever for more than 24 hours now. I am actually extremely well infact, my pulmonary function tests are up 4% since I started the Aztreonam (about 8 days ago). I am so excited about this news, I could just pee.... Also, i called the pharmacy about getting more Aztreonam (there is a national shortage right now) and the pharmacist was able to nab some from the hospital and is stashing it for me, so I am going to have almost a month on hold, so i can work with getting the meds as they are released. SO NICE of her to do this for me. Anyways, thank the lord, no hospital. ALSO... my mom was able to reschedule our hair appointments for tomorrow... so I will still get my hair cut!!!! YAY!!!!!!! It is turning out to be a really good week. I haven't had a hopeful appointment like this for a LONG TIME. I think it has been at least 2 years since I have had something happen where i wasn't just maintaining my pulmonary function, but actually gaining. My goal is to keep getting listed for transplant as far away as possible, and this is making it more of a possibility. It also will hopefully let me push my time between IVs to be longer. YAY. Thank you all for caring and supporting me.... it gives me strength.

CF rears it's head

Well, today ended up being a dud. What a bummer.... I woke up at 3am last night with a fever and chills... it appeared to be just like my jerish Herximer reactions I get if I am not desensitized to IV antibiotics.... It went through the same course, and today I was going to not let it stop me, but as I was getting ready this morning (after not sleeping much) It started again and i got more fever and extreme chills and shivers. So we had to call to cancel the appointment. BUMMER. Now I have a doc appointment tomorrow at 830am to evaluate what is going on. I was feeling well, and it is hard to believe an exacerbation hit this quickly, but I can't deny that I don't feel too hot today. So of course all my laundry is dirty, I need to clean the cat box, and I might have to go in the hospital. It always happens this way, that I have so many loose ends to tie up before I leave for a few days. I am hoping tomorrow I won't feel so crapy and this was a reaction to Fosamax that I just started yesterday, but I think the clinic thinks it is an exacerbation.
NEW TOPIC.....
Just as i was typing the last line of my blog entry Milton decided to get on the computer and put his paws on my keyboard and his head on my hand. He erased everything! Luckily casey came to the rescue and told me to push Control Z and it brought it all back. Thank the lord! Well, I am going to sign off now... I am guessing Milton needs attention.

Tomorrow tomorrow.....

The sun will come out Tomorrow, so you better hang on till tomorrow...... (those were words from Annie). Tomorrow is the day i am going to take the plunge and get my hair cut. So the words from Annie seemed appropriate (since i am a curly head). I am going to own the curls, and be a curly gurl. My appointment at Madusalon is with Adrian, and my Mom has an appointment with Isabelle. It is a special salon that specializes in curly hair, which is quite a skill. Most people run screaming when they see curly hair, but the people at Madusalon offer a warm place to fall and want to help you bring out the curls instead of hide them away. We are both excited, but honestly a little nervous because it will be a change. I will have to make sure to take a before and after picture.... wish me luck. I will report back!

Becoming a Cat Socializer

Tomorrow morning I am taking my cat socializing training class for the Humane society of silicon valley. I am very excited to complete one of the final steps to working with the cats. The last step after the 4 hour class is to have a 3 hour appointment to go around with a mentor to teach you about the details of the shelter and cat handling safety. I do believe that i am naturally good with cats ( i do have a good track record of taming the most difficult cases at Bay area cat rescue) but this will be a different scene, and I am excited to have formal training with cats. I have always been very involved with animals, and wanted to be a vet when i was a little girl. I appear to be coming full circle in this stage of my life. There is also the potential to become a cat adoption counselor with more experience, and I feel this could be a really good position for me, combining my love of animals and counseling skills (granted it isn't therapy, but working with people). I am excited at the potentials at the humane society, but I can get overly excited, and not be able to fulfill all of my desires because of my illness... but i want to do what i can. so i am off to bed shortly, and will have an informative day tomorrow... hopefully i will survive the earliness... wish me luck. MEOW.....

Aztreonam

Hello everyone.... I have a magic word, Aztreonam! No, i didn't say Alakazam.... Aztreonam is an antibiotic used to treat Psuedomonas, which CF people harbor in their lungs. I have taken Aztreonam through an IV for years, but only today, right now as we speak have I gotten to take in through a nebulizer. I have been trying to get this drug, as it was supposed to be FDA approved late last year, however it didn't get the approval, due to political reasons, is what i have been told. I have pleaded with the docs to find a way for me to get it and now FINALLY i have gotten it. It tastes a bit like paint thinner, grass, and rotten eggs, but the potential benefit that I have heard about is well worth the nasty taste. I am so excited to get to try this drug. My life is obviously boring if drugs is what i am excited for, and not even psychoactive drugs.... There is a national shortage of the drug, but I have enough for 20 days, and hopefully that will last till I can get a little more to complete the 30 day cycle. The plan is that I take this drug for 30 days and switch to another drug called Colistin, which I have taken for years, for the other 30 days. This method helps to keep me on antibiotics with the least risk for resistance to develop. Well, wish me luck in getting this in my lungs... and hope for improved lung function!!!!!!!

Addict

Well, I am an addict... it is official. I am sure I posted earlier that my beloved Mother's cookies was put out of business by the current economic crisis. I have been eating Mother's oatmeal cookies since I was a little girl. They are my security blanket. I stocked up when I hear they would be gone, I had 7 boxes. Well, my stash is dwindling and I had a freak out the other night... and went on an internet search for mothers cookies... well, i found some. i bought them and I will be getting 6 more boxes to help my addiction and grieving process.... I can't wait till they get here! I will have to ration... I know i am ridiculous........

Room-a-day-give-away

I have been entering a contest called the room a day give away.... It is for $25,000 to re-do a room of your choice. I am hoping and praying that I win. I know it is silly, but I have found weird ways to get some money each year. I am running out of interesting ways to find money without working, and I am hoping that this year I will be lucky enough to nail this one. I know it sounds stupid, but if you find it in your heart to send out positive vibes, I would really appriciate it. I know we need world peace and other people are suffering, but this would really bring a lot of joy to a poor little disabled 27 year old (wink). I will let you all know if i win! There already have been a bunch of drawings, and I am hoping that i win this week. Feel free to enter for yourself also, if you google room a day give away, you will find where to enter. Good luck to you if you enter.... I got a good feeling about this...... It is time for a new Kitchen to manifest itself in my house.... new kitchen.... new kitchen.... that is the montra.... new kitchen.........

sinks and hair?

I don't have much direction with this post, but I haven't posted in so long and I have some time right now, so here we go. For a while now, since new years eve to be exact, I have decided that our house needs some major re-organizing. We started on the garage, which took almost a week of solid work, and we have done stuff in the living room, I cleaned out my closet and now I am slowly working on the office. Part of the problem is Casey and I never worked on combining our stuff when we moved in, we just threw it all together. There are duplicates of things, and stuff that hasn't been used in a while, it is all about figuring out what to keep and what to throw out. There is a lot of compromising when it comes to marriage. But it is working out well. It is just a slowly but surely thing. It is hard to have chunks of time where we both are motivated to do big stuff together. I think it was last weekend Casey finally was able to install a new sink fixture in the kitchen. WHAT A WORLD OF DIFFERENCE. it has one of those heads that comes off and you can move it around... FANTASTIC. Well, I just realized I am offically an adult when I get excited about the kitchen sink faucet. I guess that concept goes well with my new wrinkles i have recently found. haha.... I have also decided since I am an adult that I need to have grown-up hair. So, I am going to go to a curly hair specific salon and get a consultation on what to do with the mop on my head. I am hoping they are inspiring and have a lot of good info, I think i am finally secure enough with myself to put the hair out there.... it is one intese thing. so that is what is on my mind right now....

Long time

I have not posted in a long time, I haven't been inspired and I don't think anyone reads this.... But I didn't like that it still said I was in the hospital. I am out and have been for a long while. I am doing pretty well, just busy with life. Maybe I will be inspired to write again.... Just don't know if it is worth the time, as i don't know if anyone even checks it.... so let me know if you do. Thanks!