Thanksgiving in Hilton Head

We drove to Hilton Head for Thanksgiving, and we had a fantastic time with the family. We didn't do much outside of the condo, which was fine with me! We played some games, relaxed, read, watched football, and ATE! Grams and Papa outdid themselves as always - YUM!

It was so nice to see Tracy even though it was only for a day. Also, we had Susab with us, and it was awesome to get to know her better. Michael, Katie, and Morgan had fun even though they are used to more action in Hilton Head! We saw Harry Potter and Tangled at the movies.

On Saturday, I did my first 18 mile run. Unfortunately, my knee started hurting ,and I stumbled on a tree root and hurt it. I really struggled to make it back the last 5 miles or so. I hope it gets better quickly! Mikie did 12 miles today! Way to go Mike! So proud of you!

We drove home on Sunday and didn't hit too much traffic. It was a fantastic family weekend! Happy Thanksgiving!

OMG Another Birthday

Today, I have my last 30's birthday. I can't believe it. Seems like just yesterday that I had my last 20's birthday. Time flies.

MoMo had her infusion today, so we hung out together at the hospital. She was so sweet and started my birthday out with a cupcake at midnight with a candle. Mike was so sweet and got flowers and a gift card. I am a lucky girl and I am thankful for 39 wonderful years. I hope that the next ones continue to bring joy!

16 Mile Long Run

Today, Travis and I ran our 16 mile long run at Flatwoods. It is amazing how mentally challenging it is to keep running that long. I made Travis tell me the birth stories of all four of his kids to keep my mind off of it. We had a good time, and I felt beter than last week's 15. Good sign. Next week is my 18 mile long run and I will be doing it solo.

Thanks Wachovia

Today, I went to deposit checks in the ATM, and I just love the envelope-free ATMs there. I have blogged about them before, but they are pretty cool machines.

So, today, nothing exciting. Just depositing. Then, at the very end, the ATM tells me Happy Birthday with a little cake and candles. I tried to get a picture, but it disappeared RIGHT as I took it. :(

Nice touch Wachovia.

Healthcare Drama

This was another one of those days that really makes me wonder about our healthcare system. The day started with me needing to get Morgan an appointment with her GI doctor. She was originally seen over an hour from our house. However, the group has an office about 15 minutes from our house. The original office had said we could transfer there with no problem. So, I called. They said that they would have to get her PAPER chart to the office first before they could make an appointment so there would be no way that she could be seen this week. WHAT? Coming from someone who does electronic medical records for a living, this was just frightening. First of all, forget EMR's for a minute. Haven't they ever heard of a FAX machine? Secondly, the part that was the most pitiful to me is that if she was a NEW patient, she could have gotten an appointment. Third, our health care system had better hope that it doesn't change because customer service like this will not work in a consumer-driven market.  I relunctanlty agreed to go for the hour drive just to get her seen. Sigh.

Then, the home health agency finally found a nurse who could come do Morgan's home infusion. She is coming at 3:15, Victory. At 3:05, we receive a call saying that they had contracted the nursing portion out to another agency and they just found out that they aren't licensed in our county. Really? They say they are still working on a new solution and will let us know. At 4:45, they call to say tha the nurse should be heading our way in 2 - 4 hours. Nice. Around 7:30, he shows up. For an HOUR, he tries to stick Morgan. Misses twice. For the third time, he gets an ULTRASOUND machine and brings it in our house. He tries to stick Morgan using that as an aid. He still misses. He injects lidocaine so that she won't feel it. Oh man. He tries for what seemed like forever. Finally, he gave up. He then starts mumbling about a midline and says he is calling "someone more experienced." Oh my. It took every bit of my strength to not grab the needle from his hands to poke him in the eyes. The new nurse showed at a little before 10 (this is PM). She sticks Morgan ONE time and has it in . We hook up her med and away we go. Poor girl. She had a rough day of it. However, this was her 6th day of school in a row (counting Thursday because she would have gone if they had school).

Here's to finding a cure for Dermatomyositis so that she doesn't have to go through this treatment drama. If you would like to sponsor our team who is running and walking for a cure on December 19th, please go to http://www.firstgiving.com/curejmformorgan.

Creaking By

I woke up and felt very stiff. I didn't really feel  too badly, but every time I stretched I knew my joints were there. My left knee is bothering me some. As the day went on, my leg muscles got more sore. They aren't too bad, but I do feel them every time I stand up, sit down, and go up and down the stairs. Man, I love this marathon training thing. I am so very glad I thought of it. :)

15 Miles - DONE!

Thankfully, Travis agreed to run with me. Of course, he showed up late. Carmen went ahead without me because it was her daughter's birthday and she wanted to get home. I knew that I needed company or I wouldn't make the 15 miles. Thankfully, he didn't bail. I wasn't sure he would really come.

About a mile into the run, he tells me that he hasn't run more than 9 miles and that was a couple of weeks ago. UGH...However, this is Travis who works out regularly and runs faster than me. I figure that he will pull through with 15 like he did when we did 11 at this same place. Since I run slowly, I felt like he would hang.

It was a pretty tough run for me. I felt bad much earlier than I did last week. Not sure why...maybe the temp as it was really chilly last week. Not really sure, but I was struggling early. I recovered but then struggled again around 12.5 and the last mile was really tough. I am not sure I really want to know what 26.2 feels like. I guess I will just keep going at this point and see what happens.

When we were between 13 and 14, this bicycling guy tells us that there is a rattlesnake up ahead. Uh....a what??????????? Isn't it winter? Aren't they supposed to be hibernating? Then, I SEE the freaking thing. It is ENORMOUS. It was right on the path. Of course, my bestie Travis just leaves me. Even this nice lady near us leaves me. I am terrified. I do not want to make the snake mad. Travis and lady went to the right of it, but that is the direction it is going. I finally force myself to go to the left of it (thinking surely it would take at least a milisecond longer for it to turn around and attack me) while travis is saying, "just sprint by it Amy." HA HA HA. First of all, there is no sprint in my legs. :) Secondly, aren't you not supposed to sprint when you don't want an animal to attack you? Hmm...anyway...I didn't like it at all. However, the endorphins did help me survive the rest of the run. :)

THANKS TRAVIS! I appreciate your company on the run! Looking forward to next Saturday and 16 - 17!

We went to dinner at Dickey's BBQ. It opened a while ago near us, but we haven't been. It was pretty good. I had a pulled pork sandwich. Been a long time since I had some good ole pulled pork.

Then, we went to see Life As We Know It. It is a story about a couple who dies and leaves custody to their two best friends who are not dating and who don't like each other. It is a very, very funny movie. We really enjoyed it.

TGIF!

Wow, this is just one of those times in life that I am thankful to have made it to Friday. I am going to try to leave work behind for the weekend and to RELAX. I am reading the John Grisham book, The Confession. It is nice to read an easy, suspensful book that is just relaxing.

Happy Veteran's Day!!

The kids were out of school. Liz's brother is home from Afganistan safely!! I am so happy for all Veteran's. We appreciate all that you do for us!!! We will say an extra prayer for you all today.

This is always the day that we laugh about as my "should have been" birthday. :) Since Mike was 9/9 and Mark was 10/10, I had to goof it up and not be 11/11. :) Oh well...the first of many things I screwed up. :) Life would be boring without mistakes to learn from, so I guess I started learning early. :)

Atlanta Again

I left on Monday morning early to go to Atlanta again. This time, I stayed in the Hilton Suites. After my frist quarter boycott of Hilton, I have ended up getting back to gold again this year (no Diamond for sure!). I am also gold at the W (starwood). I guess it is good enough to be gold on both. I am Platinum again on Delta. I have definitely been traveling wayyyy too much! I am hopeful that 2011 brings a less travel.

Robin W was in my meetings. It was SO good to see her and to get to catch up with her. It felt like old times and was awesome. I hope that we continue to work together more in the future.

Good meetings...good socializing...bad diet. :) I did get up and run on Tuesday and Wednesday, but I didn't go as far as I should have.

HOME!!!

I woke up this morning at my very own house! I did get up early to go run with my group. It was SO awesome to run with my rbff (running bff) Carmen!!! It had been SO long!!! She ran the first 9 with me, and then I ran another 3.4 alone. It felt really good. I am very far behind in my training for the marathon. I hope that I can still do it. With my foot injury and then all of these hospital stays, I haven't been able to run like I wanted to run. :(

On a good note, Morgan was in the Tampa Tribune newspaper today! The link is here.  We are up to $4370!!! I am so thankful for all of the research funds and awareness we are raising!!! The Cure JM president and the co founder have both send us bracelets and pamphlets and logos to use. Their support has been great!!!

Dreaded Spinal Tap and 9 day hospital stay!

This morning started out ok. Radiology was a bit behind. We made sure that Morgan didn't have anything to drink except for a sip of water with her prednisone. The radiology nurse was super cool and was really great to Morgan. We had a student nurse go downstairs with us too. The pre-op area was deserted since it was Saturday, and we listened as the radiologist and the anesthesiologist butted heads over who should wait for whom. It was the battle of the egos. The radiologist wouldn't come until the anesthesilogist came. Then the anesthesiologist was mad that the radiologist wasn't there. Man...

Finally, they took Morgan in, and I waited in the surgical waiting room. The radioligist came in and talked to me and told me everything went fine. They didn't have to draw off much fluid and she did great. Then, I wanted for a really long time. She was supposed to be in recovery so I didn't think that much of it. Finally, the nurse came in and said that the radiologist was supposed to tell me to go back to her hospital room. Doh. Morgan was crabby when she got there and I wasn't there. Her back was really hurting her badly. She had to lie flat for 2 hours and then she could move. She got up after 2 hours and she had trouble standing up. She said her back hurt really badly. Weird. She didn't have this type of pain after her last one.

As the day went on, her back was worse and worse. She was taking all kinds of pain meds, but it wasn't getting better. The doc wanted her to stay until around 5 or 6, but it was very apparent that she wasn't going anywhere by 6. I just assumed she was having more pain than she did last time and that it would get better over night. WRONG. By 3 am, she was still not able to stand, was puking every time she went vertical, couldn't move her legs, couldn't stand even with assistance just to get into a wheelchair. It was awful. Around 5am she looked me straight into the eyes and without drama, she said, "do you think I will ever walk again?" It took everything I had to not melt. I tried to reassure her that her muscles were just angry and that it should get better soon. She got some more pain meds and went back to sleep. I was very worried by now and started googling spinal tap complications. In case you are ever in this situation, don't do as I did. It made me panic even worse. I tried to stay calm, but I had to step outside of the room to talk to the doctors when they came in the moring. I was tearing up and I didn't want Morgan to see.

In the afternoon, the pain management specialists came in and said that they wanted to try valium and a higher dosage of Morphine to see if she could get som relief. By 7 that night, she was MUCH better. She still had pain but it was like a 5 or 6 out of 10. I moved my car to the front so that we would be ready to go home. I packed up our stuff. I was ready to get out of there. However, by 10, she had a fever. Hmmm...weird. Her head was also worse. Hmm....

By morning, her head was a "10 million" out of 10. She could walk to the bathroom again with help (whew!!!), but she puked every time she was vertical. She laid almost flat and was miserable every minute. She didn't get on the phone, didn't watch tv, didn't really talk. This went on until Wednesday.  Tuesday, Mike came and took my place. I flew to Philly for a work meeting and flew back on Wednesday night. Of course, while I am gone they decided to do a blood patch (although they apparently don't use blood anymore and instead use contrast dye). She was MUCH better but not great after the patch. Her head was down to a 5/6 again. We were thankful. She showed signs of life and smiled and played on her phone again. Whew.  Mike was FANTASTIC while I was gone. It was SO very hard to leave her in the hospital, and he sent me notes every hour or so. I mean NOTES. These were VERY detailed and descriptive. I almost felt like I was there. Very sweet of him and I will be grateful forever. I did freak a little when he said they were going to do the procedure while i was gone, but Morgan said she was ok with it. Then, my friend Kari at work has a brother who is a radiologist at the hospital (small world). He was going to do the procedure, and I felt SO much better. I don't even know him, but I felt comfort that he would take extra special care.

By Thursday, she was doing better but still 4/5/6 headache. By Friday morning, her head was a TWO out of 10!!!!!!!!!! FINALLY! The doctor wanted to keep her one more night to be sure, but Morgan talked him out of it. :) She actually read a book most of the day. It was great to see her doing something again. We left around 3 in the afternoon. It was SO good to be home. I had gone to the airport on Monday and didn't go back home for 12 days since we were 9 days in the hospital. CRAZY! I am SO thankful to be home!!!!!