Robert's visit

My brother Robert came to visit this weekend! He has been talking to Dad about planning a trip down here (he lives in Mississippi with his wife Carla & stepson Decarol). My sister Michel was coming to Jax from SC this weekend- her husband Mark & Chel's son Anthony had a paintball tournament here in town. So, Robert decided this would be the perfect time to visit since everyone would be here.
We all had a great time!! I haven't seen Robert in a few years and I was so happy he was able to come down here. We had a family dinner at Rick & I's house last night- the weather was beautiful, it was almost a cool night & a few of us sat outside to eat. We played some pool & darts in Rick's game room, and just hung out & got caught up.
I can't tell you how happy it made my Dad to spend this week with Robert. He is worn out but they had such a great time.
Check out my photobucket for more pictures!
http://s343.photobucket.com/albums/o464/thekistners/Robert%20n%20Chels%20Visit%209-27-08/

Hematologist appointment

I had my follow-up with the hematologist yesterday; we went over my bloodwork from a few weeks ago. He said I am still anemic, but not nearly as badly as when I was post-pardum. So the anemia was not caused by the pregnancy, just aggravated by it. My iron is still significantly low, as is my hemogloben & some other blood stuff that I can't remember the names of.
He said he could just put me back on the Procrit shots, but since I am only mildly anemic, he doesn't want to resort to that just yet. So, he wants me to start taking an over-the-counter iron supplement 3 times a day, if my stomach can tolerate it. If my tummy finds this disagreeable, I can back it off to 2 times a day or 1 if I really need to, but he would prefer 3. I also have to take a calcium supplement along with the iron pills, because calcium helps the body in absorbing the iron properly. He was going to suggest I drink orange juice, but I can't because it's full of potassium.
He said that once we get my iron levels up, there is a possibility that there will be an increase of the hormone that my kidneys send to my bone marrow to tell it how many blood cells to make. I have to do more bloodwork in 4 weeks, and if my iron levels are still low, he said I will have to probably get iron supplementation via I.V.. Which sounds unpleasant to me, so I'd like to avoid it if possible.

I go back to see him in 5 weeks, so more updates to come.

Cholesterol & Animal messengers

Rick's bloodowork came back- he is not diabetic, which is great. But, his cholesterol was high, which is not so great. So, we are both on the diet bandwagon together. It's tough; we both love Southern style home cooking, but we are trying to stick to the adjustments.

Mayo clinic has sent my cousin Brenda the vials for her to get her blood typed, so we can see if she is a possible match. Everyone please continue to keep our families in your prayers.

Today after we got home, we let the dogs out & then I went back inside. Rick went to go get the mail, and he called me outside to come look at something. A really lovely butterfly had found it's final resting place just beside our driveway. It must have floated down from somewhere right after we went inside. It was nice, we stopped for a few moments to admire it & life slowed down for a minute after a crazy day. It was very fragile; I still don't know how it made it into our yard in one piece. I wondered what message it was trying to bring us?

Not everyone feels that animals have a soul or a spirit but I do. I also think they try & communicate with us, I think they try and be messengers & want us to be part of their life journey too. While I very strongly consider myself a Christian, I still believe the rest of God's creation has a spirit. I have always had a special love for animals, and even though having 5 animals in my small house can get crazy, they remind me every day what life should be like. They love without limit, are the most faithful friends you could ever ask for, and all they ask for in return is our love.

So, tonight I looked up butterflies online. I found it very intriguing:

"Butterfly spends the first part of its life crawling the earth, before metamorphosis leads it to spin a home for stasis (known as a cocoon). After transforming, Butterfly is reborn as various beautiful colored winged creatures of the air.
This insect is extremely sensitive to the Harmony of Earth, and is the first creature to leave a damaged ecology. Butterfly's graceful dancing-like appearance on flowers reminds us to find the joy in nature and make it a part of our life.
Butterfly enters our life as a messenger for change. If it comes to us hurt or ill, Butterfly asks us to stop keeping our joy at bay. It may take some time being alone with ourselves to listen to Butterfly's gentle requests that we allow the natural transformation of things in our lives."

I looked it up online and it is a pipevine swallowtail. Here are some pictures we took. (The last 2 are photos I got off the internet of live butterflies of the same kind)









I also had a visit from a hawk the other day. We have seen him flying around our neighborhood for a number of years and we figured he had a nest in the nearby woods. The other day when I came home, he was actually sitting right on my fence in the front yard. I pulled in the driveway and watched him for a minute- he just stared at me. He didn't fly away until I got out of the car. He was really neat- he had big red eyes. I looked him up too, and I am pretty sure he is a Cooper's hawk. Either that or a sharp-shinned hawk; the two are very similar. Here is a picture from the internet of a Cooper's hawk.



"While many birds are regarded as messengers between the worlds of spirit and matter, Hawk is considered to be more dedicated to this role. It symbolizes clear-sightedness and a long memory. It's also believed that if you hear a hawk cry during a journey, it's wise to be alert to the possibility of situations that need boldness and decisiveness so that you won't be thrown off balance.
Hawk's cry may also be telling us to open our awareness, for in a deeper sense this bird symbolizes the messages that are always available to us, if we pay attention. In this sense Hawk teaches us the lesson of receptivity.
So often we ask for something, either aloud, through repeating or writing affirmations, or through our thoughts. Then we wait and wait, and nothing seems to have happened. Not only haven't we received what we asked for, but we don't even seem to have even received a clue about how to get it.
This is the message of Hawk medicine: The answer is always given. Hawk, while soaring high in the sky, is always alert to the slightest movement on the ground below. When we cultivate that kind of awareness, we are adjusting our vibrations to receive the messages that we want to hear. In this state, we find synchronicity operating. We may be looking for a new place to live and see an article describing the ideal location. We're trying to solve a problem on the job and happen to surf onto a web page that offers a perfect solution.
Not all of our answers come from the outside world. Hawk also stands for inner vision, drawing on our own intuition and psychic awareness. When we trust ourselves, are receptive to answers whatever their source, we soar with Hawk."

An article I want to share

I'm sitting awake right now, my husband sleeping in the next room but as usual sleep isn't happening for me just yet. I wanted to share an internet article about a baby who was born at 21 weeks. Strangely enough, her name is Amillia. Amillia's good fortune though was that the doctors had time to get her out via c-section. The trauma of labor & birth is what killed our Amelia.
But I wanted people to see the pictures of this baby. She is so very tiny, but she is real. And, believe it or not, our Amelia was bigger than this baby- an inch longer and over an ounce heavier.
The baby in the article is an African-American baby, so she looks alot darker & browner, but this is startling close to what our daughter looked like. Tiny and frail, but very much a baby.
I get very frustrated because I feel like many people around me think that, after 6 months, I shouldn't still be grieving like I do. Like I am content to wallow in my grief.
I think alot of people think that unless you lose a 'real' 8-lbs full term baby, it's easier to heal. That a baby you never 'knew' doesn't have the same attachment. But it doesn't matter if your baby died at 5 weeks, 5 months, or full-term. Your child is gone. No one expects a mother who loses an infant to be OK after 6 months. No one expects the mother whose toddler dies to be OK after 6 months.

I can also see how uncomfortable it makes people when I talk about my daughter. Especially people with their own new or soon-to-be babies. Being reminded that babies DO die makes people feel uneasy. But that doesn't mean I should be expected not to talk about her.

I know very well that life must go on, and the world will keep moving around me. But I still feel like it's moving without me. And I think it's OK for me to still feel like that. I'm working through it, but it's a slow process.

Look at these pictures, and if this was your child, if you held her tiny body & felt it go from warm to cold in your hands, would you be back to your normal self in 6 months?

http://funny.zeeblum.com/2007/02/21/baby-born-at-less-than-22-weeks-survives/

Stupid storm...

I think stupid Tropical Storm Fay killed my passiflora caerulea vine..... the storm blew all the beautiful flowers away but I also don't see the leaves anymore. I keep waiting for it to spring back up but nothing yet... keep your fingers crossed. :(

"100 Years" by Five for Fighting

I put the song "100 Years" by Five for Fighting on my playlist; scroll down, it's near the bottom. I just love this song. It's about how even though life changes & complicates as we grow up, we should never lose that wild heart we have when we are young and care-free. It's about making peace with your past & where & who you've been. It's about how we should remember each moment because they are over so quickly. A lifetime seems so long but it really isn't.

http://www.azlyrics.com/lyrics/fiveforfighting/100years.html

Nephrologist appt today

I had my nephrologist follow-up today; I see her every 6 weeks now. I had my bloodowork done on Thursday- my creatanine levels were up a little from 6 weeks ago, which means my kidney function levels were down from 20% to about 18%, so no dialysis yet. I knew they wouldn't be great, because I did not hydrate very well at all the day of & the day before the bloodwork. I actually forgot my water bottle the day of the test. Also I was bad & had a cup of coffee that morning. The dr also said that one of medications, Diovan can produce a slightly higher creatanine reading on my bloodwork. But the Diovan is partly to help my blood pressure, and mostly to help me not spill so much protein in my urine. She said that next month, she might back me off the Diovan a little. My blood pressures have been pretty consistently around 100/65, so I have a little room to go up on that, if it means lowering my creatanine & keeping me off dialysis a little longer.

She really stressed the urgency to find a living donor it at all possible. I am kind of in a critical window- if I can get transplanted before I have dialysis, the success of my surgery will be drastically better. Any remaining function in my own kidneys will take strain off of the transplanted organ. And better surgery success means better chance of us getting pregnant again sooner- possibly after only a year.

My sister will be unable to donate because of some of the medications she is on. So, my awesome Gillooly cousins are next. Brenda, and Chris Frische (Rachel's husband). Gillooly kinfolk- next time you talk to or see either of them, just know how wonderful they are & what they have been willing to do for me! It still is amazing to me.

I am kind of aggravated with Mayo Clinic's living donor department. My sister was really proactive in trying to get the info & paperwork she needed from them, and they really drug their feet. She also had to make multiple phone calls to get someone to call her back. *sigh*

I'm not sure if Rachel reads my blog, but if you do, I promise I will call you soon. If I'm not at work, I am trying to keep my house clean (hah) or making dinner- my poor hubby doesn't get off work till 8:30 so we usually don't get to eat until 8:30-8:45 on a good night. Then there's the five animals and the ensuing messes they create, bless their hearts.
For you Yankees, that's a Southern way of softening an insult or gripe. Somehow it just sounds kinder- "That Billy, he is such a dumb-ass, bless his heart".

When I'm not cleaning or cooking, I'm sleeping. That's the part of this that has physically been the hardest- the fatigue. It sucks, but such is life for now.

Plans for my reading room

We are working on finish our reading/ sitting room. Rick has given me artistic license to make the room as "foofy" as I want. Seeing as I tend to have foofy taste, and I have tried to keep the foof in our house at a minimum thus far, this makes me very happy.

A brief description:
The floor is a medium oak color laminate. Walls are a very pale sage green, with wainscoting in a darker sage. Trim is a creamy antique ivory color.

Only furniture we have in there for sure right now is a beautiful armoir that was give to me by our friends David & Chris. It's the only piece of Ethan Allen furniture I own! It looks pretty much like this (another Ethan Allen piece from the same collection)- except mine is not quite as wide, and the doors have mirrors.


We are moving the bookcase in there, which we are painting to match the armoir. It is about 5' wide, and 4' high.

I already have some ivory lace/ embroidered curtains that we are not using anymore, so in the interest of not spending money, I think I am using them in the reading room.


So now, I am deciding about light fixture, window treatment, rug, some sort of chair.
I would really like to have this chaise lounge but Jesus Lord it's ridiculous expensive ($500). I will mostly likely be getting something similar. That is not $500.


Here's what I am thinking for lamp, table, light fixture, & rug.






I think it will be lovely! As you can see it will definately be a 'no pets allowed' room.

Music!

As you might have already figured out, my/ our blog now plays music! I admit, the pink background for the player was my doing.

I figured this blog needed a little pick-me-up.


I will add & change song(s) from time to time, so enjoy! Browse through the list & see what there is. Let's see if anyone is surprised (or horrified) that I like some of the stuff I do. I might sing it day in & day out, but my listening tastes are not all classical all the time, believe it or not! For instance, I wonder how many of my dear blogites knew of my love of classic country & western, and also bluegrass & old-fashioned Southern gospel...? Or Barbara Streisand...? Your girl is lovely Hubble. *sniff*
Meeeemories, like the corners of my mind.
That is Rick's favorite song.

Parental Advisory: Explicit Lyrics- I have added the song "Bulls On Parade" because it is my Guitar Hero jam. I totally slay when I play that song.

Bloodwork today

Yesterday I went back to the hematologist for another follow-up. He has been treating my anemia. He said on my labs from late July, my hemoglobin looked really good. So it's possible that the anemia was primarily pregnancy-related and not caused by my kidney failure. I went & had more blood work today; I go back to see him again in 2 weeks.

Rick had some blood work done yesterday- they had trouble getting the vein on his arm, so they had to draw from the back of his hand. He was telling me about it and said that it hurt, but then he thought for a minute and said, "No sympathy, huh?"
You got that right! haha

Today I also went for my monthly blood work to check on my kidney function. Last time I was right at 20%. If i get to 15% or below, that's when I have to start dialysis. I see my nephrologist on Monday and we will be going over the blood work results.

I've been pretty stressed out about it. It's pretty overwhelming to go to bed every night knowing there's always a chance that any day, I might be bound to a machine to filter my blood 3-6 hours a day, 3-5 days a week. Every day we have to think about the fact that even with dialysis, there is a real possibility that I won't live long enough to find me a kidney.
A friend of Rick's from high school, her brother was on dialysis and got a staph infection (which is not uncommon) and died this past week. He was only 40.

I read all the time about these amazing strong people who are sick and say they're never scared, they just accept what comes at them, that they just greet every day with a smile and never let it get them down. I just don't know how to be one of those people. Maybe it means I am weak, but I AM scared, and I'm not OK with all the crappy things that have happened to us. I'm not always smiling and it does get me down a lot.

Anyways, I am off to make macadamia-crusted mahi for dinner.