Thursday, April 23, 2009

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.

Saturday, April 18, 2009

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....

Tuesday, April 7, 2009

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....

Thursday, April 2, 2009

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.

Wednesday, April 1, 2009

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!