9 years and still going strong :)

Tuesday was our anniversary. I woke up and Jason wasn't home, but there was a 2 page letter on the counter, I started reading it, but then he came in the door. He said he had some creating to do, while he was doing his stuff, I read the letter which was one of the most heartfelt things he'd ever written about a dream he had and how important I was to him. I don't know really know what to say about it because again, it was so heartfelt and out of the blue. I know what a great husband I have and this was just a great reminder of it. He made me a "9" out of a glazed donut from HyVee, then we went and played tennis at Allendale for a couple hours. That, of course, had it's ups and downs. After that we went home to shower, then went to Baker's Square since we went there often when we were dating. I ordered a grown up grilled cheese, but I forgot that they had tomatoes on it and Jason asked if they could make another one which they had no problem with and they actually only charged us for one and when Jason ordered his pie, she didn't charge us for that either. I had had her take a picture when we got there and I told her it was our anniversary. After lunch, we went home to put the food in the fridge, and I took Daisy on a short walk, then we went walk around by Kwik Trip and stuff, then came back and Jason got ready for softball, then we went to Target and I got some Bugles and Coke, then we went to the softball game. I sat by Kiah and chatted with her, Roxann and Erika and Jim. That was a pretty full day :)

Plasma Exchange and Infusion Therapy

So yesterday I started a new therapy. Originally I was supposed to get a central line, but Dr. Albright preferred them just using my fistula.  At 1:30 everyday I go get plasma exchange. It's like dialysis in a way. They put in 2 needles into my fistula, like at dialysis and hook me up to a really intricate machine that takes out my plasma and they have bottles of man made plasma that they put into me. They did a really good job. I had Jen and Louann on Tuesday and Jen & Jill today. On Tues, I got really cold (which apparently happens) and I had at least 10 blankets on me. But today, they had a blood warmer and they also give me calcium which makes me feel like Ive peed. Today, they were giving me another calcium injection into the machine and I started feeling really sick. They said it's because they are taking off fluid as well and I had had dialysis today so it was kind of a double dose of taking off fluid. It came and went pretty quickly, but it's still not fun. After I'm done with that I go down the hall to the Eisenberg building to get IV IG which is nutrients and that takes about 2 1/2 hours sometimes a little less. The first day, Tuesday, they basically were confused and not knowing how to deal with the fistula because they had never done it before. I would say something to the nurse and she would say that she would get the right person and then that didn't happen. When a person came to take the needles out, she didn't listen to me one bit. I talked to Kim at dialysis about it today and she talked to Theresa Elwood (the nurse supervisor) and they talked to the charge nurse at Eisenberg and they said it would be better today. It was better today. I called Christina and she said she would come and Non called and said she would come by as well. Both of them were there for me today and another nurse supervisor (Jane) came and talked to me about it. I had Mali as a nurse and she did a very good job of listening to me and pulling my needles. I'm just frustrated with all this because I'm letting my guard down and I don't like that. I don't like needing people or breaking down and letting people in. I'm worn down. Period. I just want this to work and just have to have to take pills and live life.

ATF 2013

this past weekend was full of lots of interesting things

• talks with Brock and some talks with Josh Calvert
• Bekah being afraid of the toilet
• Mary snoring and groaning in her sleep
• the heater kicking on and the fridge kicking on
• the mosh pit
• following Heather back to her dorm, pretty sure she was lost
• people throwing snowballs
• jumping on the beds
• Brock, Mike & Jamie never sitting next to anyone else
• Lydia flying a paper airplane into this ladies head...twice!
• break dancing and conga lines
• glow bracelets
• Rapture Ruckus
• Mackenzie being a butt and dragging Lydia with her
• Bekah being very blonde!
• Lydia singing about her boogers and not going to sleep
• lots of farting in our room Lydia"guess what?" Mary"what?" Lydia"I farted!"
• the screeching MC girl, Hannah, "do you want free stuff???"
• dinner in the van, I had ritz crackers and cheetos :)

Irritation

You know sometimes people just irritate me. Tonight people were talking to Rebekah about how she was on a diet and Jamie told her she didn't need to be on one and that she was skinny and I seconded that and she just got up and walked away. I went and found her and talked to her about it and how the insecurities I have and that she is a beautiful girl and it is good to eat right. It was hard because I felt like I wasn't telling her what she needed to hear, but I'm guessing anything I said wasn't going to help. Then earlier I had it out with Joel about him saying I hated something online. I don't like the word hate, it's a very strong word adn shouldn't just be thrown around. But I went up to him later and just called a truce. Then I was texting Brock during the youth group and I went and talked to him later and he's like I just told you to pay attention and I was like I can pay attention to multiple things going on and he was like well I like to focus all on just one thing and he was just being a brat about it, so I said fine I won't tell you you're good anymore. It's just frustrating how people are. Or maybe how I'm perceiving it, I don't know. Tab is coming home this weekend and I'm definitely not thrilled about it, I'll leave it at that.

Health stinks

So fistulagram time again. I just had one in September and just like the last few times, I dreaded it becasue the last few times have been quite painful. And the hospital staff doesn't seem to care much that it's painful. So I started out the day at 6:45 am at Gonda 2. Stop there, it was weird that they were having me at Gonda because I'm always at St. Marys, but like the very first time I had it, it was at Gonda, so anyway, I got called back about 7 am and Jessica was my nurse, very nice girl probably about mid 20s. After I had gotten in my gown and was laying there, they had the curtain partly open and I noticed Lindsey and Beth from dialysis there. They had a guy (Kevin) come in and start the IV which he did right away. He did a great job. Later after all the usual questions, an anesthesiologist came in and I explained about getting better drugs like I did when I had the bone marrow aspiration (Non had written it done for me) and he said it would be no problem. Emmanuel was one of the guys that explained everything about the drugs and said they would give me an additional drug-propofol would help make me more sleepy. A Dr. Sharp came in and had me sign a consent form and explained all the risks and everything. Then after awile Beth came in and said she would be the one administering the drug and that she would take care of me. So Emmanuel comes to take me back to the room and we get just about there and Dr. Sharp stops him and says to take me back to the prep room because "we're working out kinks and we may not do it today." So pretty much everyone was confused, but they took me back to the room and Dr. McPhail came to talk to me about how he looked at the ultrasounds and how my fistulagram is very narrow closer to my heart and how if they did it here (Gonda) and something happened they just don't have the equipment to handle it safely. He mentioned several times about how they couldn't SAFELY do it at Gonda and how he had talked to Dr. Albright. He said that most likely they would have to put in a stint. I got really upset at that and asked why they couldn't just balloon it open and wait. And he said because it wouldn't last very long. I asked if they could still try to do it at St. Marys because I already had the IV in and he said absolutely that he would make some calls and try to get me in today. When he left the room, I started crying even more, almost sobbing because to me a stint is permanent and I thought it would make it worse. Jessica asked if I wanted Dr. Albright to come talk to me or if she could get him on the phone and I said yeah, so she paged him and I talked to him for a little bit and he tried to explain that the stint would help keep it open longer and would be better in the long run, then Dr. McPhail talked to him a little and explained he didn't stay for sure that I would have to have a stint. Then Dr. McPhail told me they could shuttle me over to St. Marys and get me at some point today. He was very nice and explained everything very well to me. Emmanuel came in and said that they would take care of me at St. Marys....boy was he wrong! :(
So I wait for the shuttle and  take it to St. Marys and go up to Joseph 6 and when I check in, it's Renee VanNurden (Joel's mom) and that was the nicest person there. I get checked in and change into my gown and then get taken back to the room and get hooked up. Then the nurse explains that it will probably be about an hour or more because they have to work me in and I'm not assigned to a room yet. So I'm watching TV and fall asleep and get woke up by an anestheologist? and I explained to him about getting the propofol and it seemed like he was ok with it. Then about 15 min later, a nurse came up and said she was looking over my file and that I've had about 20 of these(which isn't true) and that they were going to proceed with the regular RN med push and I said no and explained AGAIN about how painful it's been and about what they told me at Gonda and she kindof argued with me about well did it hurt all the other times and I said yes at least the last 4 times it did and I felt like I just kept repeating myself, so she went away (I think her name was Mazy, something like that) then another lady showed up and said basically the same thing AGAIN about me having 20 procedures (again, not possible) and why I needed it this time and I explained about the pain and the Gonda people again and I said I really feel like I'm not being heard. Her name was Andrea and she was an anestheologist and had me do all the normal stuff so that I could go through with this drug and explained all the possible risks and stuff that it would probably sting. Then some dr. came by and didn't really talk to me was talking to the other people and then went away. Then Andrea came back and took me to the OR. The guy in there said hello and that was it. I mentioned to Andrea that I'm claustrophobic and asked if she could give me some drugs beforehand and she said that she would give them to me as soon as they got me settled in. She asked about putting a oxygen mask on me and I said it was ok and a couple minutes after that I woke up in back in the original room and I had some guy named Terry who had the worst bedside manner. He said he had to take some stitches out and I had to stay for about a half hour for observation. He took the stitches out and asked me if I wanted anything and I said just ice and he brought it and gave me two spoonfuls and then left. After that I started crying because I just wanted to go home because there was no caring from these people. He came in and wiped my face with a paper towel. Andrea came in for a couple minutes because I had broken blood vessels around my right eye. She said to Terry my nose was somewhat bloody and that I was itching my face during the procedure and squirming because I was in pain. (The good thing is I don't remember any of that) When they brought me back I squeezed Andrea's hand and thanked her because she gave me the drugs. After she talked to Terry though, she didn't say anything to me. After Terry wiped my eyes, I said I just wanted to go home and he said ok, took my IV out and took me out to the lockers. I got dressed, then waited for Mrs. B, when she came I broke down crying again. How can you have such nice people at one place and such unkind people at the next??

Relatives and Dad's a pill

So John, Lesa & Garrett came in this weekend, so Friday morning, we went over to their house around 10 am (apparently they'd already been there a couple hours) and they were playing a movie trivia game that Tab & Hannah put together. After awhile we went up and played spoons which was pretty crazy but really fun, breaking a few spoons in the process!(plastic) Then there was a lot of randomness going on here and there and I went down a reprimanded everyone because I was mad they didn't want to play spoons anymore. Then I came down later and started beating people with my shoe, not sure why and Hannah took my shoe away and was trying to get me and that's when Dad came down and and squashed everything. Later on he said we all had to go on a walk and it was freezing!!!! When we came back, Dad's like if there's a bunch of noise, we'll be doing it again. I said haha Dad you're funny (not) Then later Tab & I were downstairs and she asked me (by typing on her phone) if I wanted to go get some candy with her, the dip  n sticks. So we ran out to the car real quick before anyone noticed. We went to the mall and went the candy emporium store then went down to auntie annes but it was too busy and they didn't have any pretzels made, then we went into Hallmark and looked at the ornaments and that's when Lydia called and she was mad because we didn't invite her then on our way home, lesa called and was like why didn't you invite me. I said we're coming home and she's like we're leaving to get some candy! When we turned on our street, they were coming down the street, so I said we should follow them. I called mom when we were behind them and asked where they were going and she said to get some coffee. So we followed them to Target then went in and Lydia and I went off and Tab called and Joe was looking for us then we all went to the entrance because Joe & Lydia wanted to go with them and they started running out the door and I yelled watch for cars and just as Joe ran behind this car, it started backing up so Tab went over to their car and said Mom you need to watch him, he doesn't listen. Then we went back home and I forgot I was supposed to get Jason a pop so I asked if anyone wanted to go and I kept asking Garrett then I finally said you know if you go with me, you can get a Monster!!! Then immediately he was like let's go! Lydia went with too and I got her some whoppers and Mom some pixie sticks. Then we came back home and played some more games and wrestled some more.


Uranus (uterus)---Uncle John
altitude and attitude

A Day with Mom

Day with Mom today. Every 4th weekend she has to work so she gets the following Monday off and during the summer, I would go over to their house, but since the kids are in school now, so she came and picked me up and we went to Jimmy Johns over by their house. We went in and sat down and she said there's a lot of people and I was looking around and thinking, hmm, there's only 2 other people in here~ :) She meant behind the counter, but it was funny! :) Then we went by their house to get stamps, then went to the bank and they bank at WellsFargo now and we went in the drive up and she said theres a person on there. I didn't see it because the teller wasn't talking, but when the teller starts talking the camera shows who you're talking to, again funny, because it was like Mom was hearing/seeing things again! Anyway, then we went to the mall because Mom had a coupon for for Coldwater Creek, which is a very expensive store!!! She ended up getting a scarf and 2 long sleeve shirts and after the $25 coupon it was still $65! Then we walked around and went in Forever 21 and I showed her the stuff that Hannah liked, then we went to Bath and Body Works and I got a couple candles, then we went to Sams Club. There was a lady at Sams with twin boys and another boy. It was funny because the twins were putting each other in a headlock and laughing at each other! :) Then when we got to the checkout, mom noticed the mom had dropped her jacket so she went to pick it up for her, but I didn't realize that, so I'm standing there at the checkout and realize Mom is nowhere to be found!!! She just laughed when she came back. She's like didn't you know, you're paying for it?! :) Then we came back to our place and played a couple games of Zip and a couple games of No Speed Limit. Oh and we had to go to the church to get Dad's computer cord that he left during SS. Then after we played some games, I asked her to change my nose piercing for me. She actually did a great job. I love days with my mom! :)