 |
| I decorated my windows with the few colors I could find and steal back. |
 |
| I put this drawing from one of the students in CA right in front of the toliet. It says I will be healed, and dance, and laugh so hard I have to go to the bathroom. |
I'm obviously writing this at different times and dates....I'm am home, sitting in my chair, took a nap in my bed today, but still do not not feel myself. When you lose a week of your life, everything just feels weird, out of wack, unorganized, like your forgetting something, missing something. I didn't blog much in the hospital because I didn't really know anything new and it was very frustrating. Half of the time it seemed like I was on the toilet, the other half I was the Easter Bunny trying to cheer people up so that I wouldn't think about how I could eat pretty much ANYTHING. I spent a lot of time with staff that I have known for a while now, patients that were there the same Nov 2010, I was there, escaping the hospital to go to the Michael Carlos Muesum, looking at the snapdragons, stuffing easter eggs, and meeting with PT, social workers, the colan team, nurses, techs, NP's, physicians, the boutique lady at Emory,and tellling respirtory 12x's that if do not need a breathing treatment, correcting pharmacy, through my nurse, playing my guitar, trying to understand my lab equation, and what variables are going to change this week, being scared that the hypothesis is "I don't know" since I'm such a weird case.
 |
| These were the ladies that let me join in the craft making. . |
 |
| These are flags that the Buddists make... they are all over the top of Everest. I made some two but made them Christian and brought some home for Jonathan and Evalyn to do. |
 |
| If you don't see you name on here yet... I'm not finished. |
 |
| The square piece of paper is very neat. you put a picture, and fold up while writing prayers in it, then you decorate it with string while you are meditating or praying. |
So we have ruled out two of the four... I guess five because it could have been just a nasty bug.
The C diff and the CMV came back negative. I'm waiting to see about the biopsies, but they said that they didn't see anything. We are also waiting to see what the study drug does at a lower dose Drinking that stuff was not that bad jjust impossible to do in 2 hours. Oh, but they one of the teams leave right before me, that means they can only do one at time. I came down stairs with a mild migraine and then had to set in a room with other people getting prepped and recovering. The 12 different monitors and the florescent light were about to send me through the roof. I finally asked if I could be placed somewhere else that I was very sensitive and getting more anxiety by the second and I was starving!! The nurse remembered me saying I was very sensitive the moment I came in so they put me back in the room where I was going to have the procedure. It was nice, quite, low light, and freezing. Ended up with a gown on, and 4 blankets, one heated. I enjoyed having some pure oxygen for a few min in a way. Weird. The staff was so nice there, but for some reason the Dr. didn't come talk to us after. I asked something about what was saying as I went under and Adam said i was talking about food.
 |
| From I love Lucy " Do you pop out at parties, are you unpoopular? Well all of your answers are in this bittle lottle." "Ummmm, it's tasty too" |
 |
| Told my mom to take a pic of me after the procedure with my ears on. Not too shabby.. of course they were not running anything up my nose. |
They said to stick with clear liquids for a while... ha ha. I got back to the room and downed a smoothie my mom got, 2 fish tacos, and some onion rings. My cuz Andy brought the rest and we had good time playing the guitar singing and talking. I got you Andy.
 |
| Andy changed my guitar strings for me and it sounds great. Thanks Andy!! |
I had a lot of fun being the Easter Bunny. I made a lot of people smile and they enjoyed the verses. I was able to take a walk with my friend Amanda, who also relapsed, and she now has Dr.K! My two cousins, Amanda and Kristy came to see me. Amanda and I had time to go out to eat and it was so good. We put down Easter Eggs and noticed that some them was picked up already on the way back. We also stopped by the museum again so she could see the awesome Mandala's at Michael Carols. It was great to hang out with her. Then Kristy comes and they both help me pack up and leave. Kristy use to work for Dr. Khoury and we got a picture with him and I was able to play him a song. Amanda took me to the amazing huge Dollar Tree, then to my Aunt and Uncle house where we decided to spend the night to be able to see Scott the next day. We had a good nights sleep and I got up to fresh coffee that my uncle John was grinding.....yea yea. Then he made us amazing waffles... yum!!
 |
| Now I'm a beach bunny. |
 |
| Go Amanda!! |
 |
| These snap dragons are to die for. |
 |
| Amanda is such a beautiful person inside and out. I'm so proud of her. She bought me food thinking I was going to have to stay the whole weekend and also bought me 2 dresses that I'm collecting in ever color. Thanks Amanda. |
 |
| Dr. K always wants me well enough to be able to play. |
I left Emory with a new kind of insulin, because I'm too sweet, in addition to my other insulin. So it's still 4 checks a day but 2 of each insulin. Then I started a new pill that is 4 times a day. Just wait till I write all this stuff you will be amazed. I have to make me a check list, so I will share it with you. It might help my friends. My nurse Christina and all my techs were just wonderful this week. I see the bone doctor on Thursday and Dr. Khoury is nice enough to see me on Thursday on his off clinic days just so I don't have to go down twice. Isn't that sweet? I'm hoping they are able to find out exactly what is wrong with my different bone pain and stop it in it's tracks. I'm told there is no way to reverse it, but I believe there is. Oh, I also started physical therapy. I don't know where I'm going to fit that in the schedule. My back has been hurting really bad, so please pray the the osteopendia has not gotten worse and pray for my poor teeth. I can't even get a cleaning and now after radiation and chemo my genetically incline horrible teeth are even worse. They want something like 400 for a new bite guard. Most important please pray I stay healthy and that there are no side effects to the medication, that I don't have any more GVHD, and it was just a stomach bug. I know this sounds kinda selfish, but my mom, sister Jen, and me have a vacation planned in less than 10 days to my favorite place in the world. Ossabaw Island. I really want to go. It's already paid for, and want to send some time with the girls. This week, Fay is going to help me clean up a little and start Evalyn's flower garden around her playhouse. Fay is so talented with container pots too. We are going to lay low for a while, no yoga, no story time, not too much, since I still feel weak and I don't want to get sick. Instead, I'm trying to get some kids over to play that I know are healthy.
Thank you for all you love and support,
Heather
No comments:
Post a Comment