Quickie

Hey everyone! We made it last night safe and sound. I can't do a long update because I have to finish getting my shit together.... Its time to start all my tests.. :-/ eek!

Wish me luck and pray hard!
Ill update when the day is over

Picture Update

So i have been trying to get some pictures up from our trip all day, but this morning the internet wasnt working and then it wouldnt load the damn pictures and now it is FINALLY finished.. so now i can share...
Yesterday when we arrived it was snowing...



It continued to snow until sometime into the night. We enjoyed some time playing Wii fit (though I just watched which was just as entertaining).

Jean practiced her hula hoop

While Gordon was more into trying to box

Then Dan decided he would just run for a while

For a while Jean hung out with Mark and then played with Chip

Maggie decided she liked Chips bed

But that could have been because it was in front of the new wood burning stove...


Today was a beautiful day, so i went out to take some pictures of the snow covered scenery.

And piece of the lake that had frozen over

As the day went on family arrived and some of them tried out the Wii Fit also.




We had a wonderful turkey dinner, but it put some of the men to sleep...




Of course once i sat down and got comfortable I learned that Gordon was asleep in his room also :(
It was almost time for desert but first Jean needed to show her Mom a video clip and Little Daniel was so excited to watch

Finally it to celebrate my birthday :)

But you could choose from multiple deserts. There was Chocolate cake w/ chocolate frosting, spice cake, pumpkin pie and apple pie. (rocky road ice cream [YEAHH!!!] and also french vanilla)

The past two days have been a lot of fun. The snow is beautiful though Chip hates it. Not only did he run into the door last night trying to get into the house but Dan told me that when he took Chip out this morning Chip jumped off the step and sunk into the snow up to his head. Sadly, my camera and I missed that moment.
I hope everyone enjoys my picture update. For all the pictures taken you can go HERE.
Dan and I are thinking of leaving Monday (tomorrow) afternoon due to the weather, but we will check the weather again tomorrow. We don't want to get to the hospital too early because there is not much to do.
Thank you everyone for the prayers. I am looking forward to possible getting an answer in a few days! I can't wait until I feel better and have enough energy to get threw an entire day without needing a nap or going to bed early.

Good Night!!!

And the trip begins...

Hey everyone. Here I am blogging from Momma Jean's kitchen!
We left yesterday about 2:30pm. Dan drove for about an hour before the sun flashing threw the trees exhausted him. He asked me if I could drive. Now i was already exhausted an had really just started dozing. I said yes and drove for about an hour while Dan napped. I was so exhausted that I just couldn't drive anymore. Dan still wasn't ready to drive so we pulled into a parking lot and took a nap. When he woke up and was ready to drive the sun had gone down enough that it wasn't bother some anymore. He then decided that since he wasn't tired he would just continue to drive. He did stop twice to nap for about an hour and a half or two and then would continue to drive. We arrived at Jean and Marks house at 8:30 this morning. (mileage wise it should be about 12 hours.) Around 930 I went to bed and then got up again about 230. I feel so much better that i got some sleep but I am still really tired.
Tomorrow we will be having another Thanksgiving with Jean, Mark, Gordon, Gma and Gpa Nusbaum, Amy, Jim and the kids and Callie and Mark. Should be fun. I am excited because there is pumpkin pie!! YEAH!!!
Chip does not like the snow. It is hilarious! We were on the deck and made him go out into the snow to pee. When we let him onto the porch he tried to run into the house and ran into the sliding glass door. It was HILARIOUS! He is fine and still is.
I will post pictures of the snow later when I have my laptop out and can get the pictures off of the memory card.
Its almost time for cottage cheese patties for dinner. .yummm food!

Urinary Depression

OkeyDokey people... I am allergic to morphine and sadly 95% of narcotics are based on morphine.. Wow does that suck!
When I was at Portsmouth Naval Medical Center last month (where I had my heart catheter)and I was taking the dilaudid every couple of hours I got to a point where I could no urinate. I was able to go at first then it got harder to go and then I wasnt able to go anymore. After about 20 hours of not urinating the docs/nurses finally became concerned and gave into my begging for a urinary catheter. However when I asked if it could be because of the medication they all said no.
This morning when I got up and went to pee like I do every morning I was unable to go with out a lot of effort. Because i had just started the morphine yesterday I figured I should bring it to the doctors attention. Everyone was quite shocked as they had never heard of someone having this problem before. Dr. Browder looked up the effects and say that urinary depression was a side effect and I needed to go off it ASAP. He told me that if I get to a point where I need to urinate and can not go to go to the closest ER and have my bladder catheterized so that it doesn't explode.
Then came the part where he had to decide what he could put me on. There is a pain patch that is fentynal but it takes 24-28 hours to start working and if i had a reaction to it and had to stop it would have taken up to 24 hours to get out of my system. Given that we are leaving tomorrow that would not work. We discussed Vicadin but in the end he decided to put me on methadone. Methadone is best known for weening heroin addicts off of heroin, but is also used for pain. It is a twice a day medication just like the morphine pills were. The only condition I had to agree to with taking it is to wait until I was able to pee normally again to make sure that if I have the same reaction we know it is from the methadone and not lagging from the morphine.

This whole thing has been soo fun and I am almost out of options so lets hope this works!!

So I packed my clothes so that we can leave tomorrow! I am such an over packer but there are things I needed to take and then I took some extra "comfort" clothes. Things that are an emotional comfort to help get me through all of this.
Tomorrow we will leave when Dan gets off work. He told me earlier that Chief was going to try to let him go early. Originally we were going to stop at my dads tomorrow but Dan wanted to drive a little further. Then we learned that Dan's grandma isnt doing well and is in a hospital in Pittsburgh because of a couple mild strokes that she had and her doctors wanting to put stents in her head. Therefore we have decided that we are going to stop in Pittsburhg tomorrow and see Grandma Bigelow saturday morning. From there we will go to Jean and Marks and will stay there until Monday. Monday we will get back on the road for a few hours and then finish the drive on Tuesday. We will be in Rochester Tuesday, Wednesday and Thursday night leaving on Friday morning to drive home (if they send me home). We will definitly be stopping at Jean and Marks as we will be leaving Chip there while we are gone. If Grandma B is still in the hospital we may stop there again on our way home. Our expected arrive home day is..... MY BIRTHDAY!! wahoo!!


That is all for tonight, remember if it doesnt make sense I am drugged up and can't help it!

Thanksgiving Weekend Update

Yeah! I am finally "getting off my butt" and writing!
The past week or so has been...interesting to say the least. I am still working part time which stinks because it takes so much energy that I really don't have to spare but I am almost done!!
Last week Dan and I went to my moms. I was so excited that we got to go because I miss my mom so much. This whole being sick thing with my mom not being around physically has been incredibly difficult. While we were at my moms my chest started to hurt worse. At first I thought it was just all the craziness that was wearing me down. I took a nap every day just so that I could function. The whole weekend was fun, but very overwhelming. Dan and I arrived Wednesday at 12:30 in the morning. Tim, Beth, Kate, Megan, Erin, Tyler, Grandma and Grandpa arrived around 5-5:30 on Thanksgiving day.
See, they drive to North Carolina first to visit with my Aunt Toots and then my grandparents have a thanksgiving lunch with her and then they come to my moms. Lars, Connie and the kids were supposed to come also but Connie was sick so they didn't. It was really scary because when Tim, Beth and everyone else arrived Erin was saying she didn't feel good. Since they had been around Connie, who was sick,I got really nervous. It ended up that she was just having a reaction to a couple bee stings, benadryl and riding in the car and after having laid down for a little while she was much better.
On Friday we all went to see Four Christmases. It was cute but not as funny as most of us were expecting. I was very proud of my grandpa because I think he was actually awake through the whole movie! Of course grandma fell asleep during the previews but she did wake up after a while.
Then we have Saturday...By Saturday I really wasn't feel good. When I ate that morning my heart hurt so bad but it went away fairly quickly. That afternoon my mom, Dan and I were headed off to go see Twilight so my mom could see it since Dan and I had already seen it. We got to about a mile from the theater when I said "I hate to do this, but I think I need to go to the hospital". I had eaten again and my heart was now burning. You have to know that all I ate was some banana bread!! So i should not have been hurting like that. Anyways we went to the hospital and got treated by some really sucky people. They gave me some pain killers and some anti nausea medicine..and then left. My blood pressure dropped and the machines kept beeping and no one came in!! Once when my mom went to get a nurse she was shoe shopping online! Another nurse was just getting rude it stunk! But after about 5 hours in the hospital they sent me home and while i still felt bad i did feel a little better.
On sunday we drove home. Dan drove most of it because I was way to out of it to drive. I did drive for a while but sitting up was very difficult, it made it very hard to breath and was very uncomfortable.
Monday I spent all day trying to get a hold of doctors but didn't get any of them to call me back until Tuesday. After talking with them it was decided that i have built a tolerance to the pain killers I am on and that is why I was having pain even when I was taking them.
This morning I ate a cookie and started having that burning and nauseousness again. I had to get Dan to come pick me up at work and take me to the hospital to get my new pills... So now here I am finishing this blog, I just took the pill and now it is time for a nap!

Hope everyone has a great day!!!!

(LESS THEN A WEEK!!!)

Oh yea, before i forget. One of the doctors from Mayo called on Monday, they want me to be part of a research study they are working on. I guess 1/3 of HOCM patients experience cardiac symptoms when they eat (which I have been dealing with for a long time). So when I go to the doctor next week they are going to do a couple extra echocardiograms. One echo will be with me fasting for I think he said 4 hours, then I will do my clinical echo across the hall.. then they will feed me and do another research echo. They will be measuring how food effects me.. Sounds like fun!!!
Now I am done. NAP TIME