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Nov 5, 2011

Extremely grateful

If you have read my mom's thankful status today then you know what I am thankful for. 


Today, Nov 5, I am thankful for the Gracie Family. While they were facing an awful tragedy they decided to donate their daughters organs and saved my life. Meeting them this past August was like magic. We became and instant family and I couldn't be more grateful that they are my donor family. 


Today would have been my donor Sherry's 32nd birthday. It is also her mom's, Sherry, birthday. Happy Birthday to them both. much love to them! I can not wait to see them in 11 days



Nov 4, 2011

Through thick and thin I am thankful

I am thankful for the few friends that have stuck with me through thick and thin. Some of you i have known for a long time and some for a short time but i love you all!

Nov 3, 2011

3rd day of giving Thanks

 I am thankful for my puppy. He helps keep me company and loves me unconditionally.



Nov 2, 2011

Day 2

 I am thankful for doctors (obviously) even though they don't always have good news, they are always (well most of them) trying to help.



Nov 1, 2011

Day 1 of the Month of giving Thanks

As we all know November is the month in which Thanksgiving takes place. Therefore I plan on saying something I am thankful for every day of the month.




1. I am thankful for my family and their support.



Aug 25, 2011

Depression

Sometimes things in live become overwhelming and you can't put into words whats going on or how it makes you feel which ends up making you feel even more overwhelmed. What are you supposed to do? Who do you talk to? Sometimes the person you would normally talk to, you can't. Sometimes the person you need to talk to, you can't.

I think that is a huge part of why i get depressed, even though I am on an antidepressant. Not because my life sucks or because bad things are happening to me but because I can't always express how I feel about something or explain what is bothering me.

I was seeing someone before we moved but that ended up being more about me dealing with my transplant and how i was doing. But that was never a problem for my depression. And the things I wanted to talk about even to this day I am still not really all that comfortable talking about. But I feel that if I don't talk about it then it will never get better. How do you force yourself to talk about something that makes you uncomfortable?

Stuff like this has been running through my head lately. I have a therapy appointment Sept 13th, I hope that i won't completely fall apart before then and that I will have the strength to talk about what is really tearing me up.



Aug 22, 2011

Meeting My Donor's Family

When it comes to writing this blog I wish I had my laptop with me on my trip last week to meet my donor family. I had so much to say and to share but now I have lost so much of what I wanted to say (details).

They are an amazing family! 
Sherry Jr- my donor
Sherry Sr- mom
George- dad
Cory- brother
Zach- brother

I am so lucky to have gotten their family members heart. Upon first meeting it was almost like we had known each other for years. There were no tears, just lots of great conversation. The first night my mom and I went to dinner at their house. We showed up just after 6pm (damn traffic!) and didnt leave until 1am. We had completely lost track of time. 
Thursday was my appointment and Sherry (the mom) came with and met my nurses and doctor. It was so awesome being able to share this moment with people who were physically there watching how bad it was before my surgery.
Friday, my mom and I went to DC for the day. It was my first time being able to go because before I never had enough energy or stamina to make it through all walking and stuff. That night we ended up joining the Gracie's for Zach's last first football scrimmage. There ended up being lightening so the scrimmage got canceled about half way through. They have to wait 30 minutes after the last strike of lightening but the lightening wasn't going to stop. After that we went to dinner and then back to their house. They offered to let my mom and me use their computer & printer to check in for our flights the next day.

My mom and I had a wonderful time and I am sad that it all went so fast. I am however glad to be home and get back to my normal days of spending time with my pup and doing things around the house. The husband should be home soon and hopefully it will be a nice peaceful afternoon to my busy morning. 


Zach, Sherry, Cory
Kim (my mom), Me, George


Sherry, Dr Russell, Me


My donor's family is big into vlogging. Here are their vlogs from the days I was there.


Wednesday

Thursday

Friday

Aug 16, 2011

The last few days have been pretty quiet and simple.
Sunday, Dan and I did a double session at the gym since we didn't go on Saturday. We did some of the weight machines and then some cardio. I had to be careful with some of the weights and actually had to skip a few because of my sternum and muscles in my upper chest.
Yesterday (Monday) I ran a couple errands with the pup. We went to Home Depot to get light bulbs to replace the ones that had gone out on Sunday. After that we went over to PetsMart to get Chip food so I wont have to worry about it when I get home from Baltimore.


Speaking of Baltimore, I leave tomorrow. I am so overwhelmed. I leave early tomorrow morning and will meet my mom in Charlotte, NC. We will then fly together to Baltimore, go to the hotel and clean up and then head to my donor family's house for dinner. I am so excited and nervous. Right now I am waiting for the laundry to finish drying so I can finish packing though I am pretty much done. Can it be tomorrow yet??

Aug 13, 2011

Lazy Day, but what a day it has been!

There is a song by Bruno Mars called "The Lazy Song". It totally fits my mood most days though I don't live up to it every day all day. However today it pretty much fit my day, at least this part of it.

Today I don't feel like doing anything
I just wanna lay in my bed
Don't feel like picking up my phone
So leave a message at the tone
'Cause today I swear I'm not doing anything

I'm gonna kick my feet up
Then stare at the fan
Turn the TV on, throw my hand in my pants
Nobody's gonna tell me I can't

I'll be lounging on the couch,
Just chillin' in my snuggie
Click to MTV, so they can teach me how to dougie
'Cause in my castle I'm the freaking man
Oh, oh

Yes I said it
I said it
I said it 'cause I can

Today I don’t feel like doing anything
I just wanna lay in my bed
Don’t feel like picking up my phone
So leave a message at the tone
'Cause today I swear I'm not doing anything
Nothing at all


My day pretty much has consisted of laying in bed and reading a little, and sitting on the couch playing on my computer and watching tv. I wanted to go out and do something but nothing seemed to be callin' my name. So instead I decided i would make dinner on the early/normal side for us so we could go to the gym and I would not have a full belly since Dan likes to go in the evening after dinner. Sadly, and unknowing to me, the gym closes at 6 on the weekends. TOTAL BUMMER! I can't believed I am bummed about this but I am. We went last night which made 4 days in a row and I felt motivated to continue my "streak". I still feel motivated to go and I hope that lasts, even though I will be out of town this week and I am sure if the hotel has a gym and where it is if they do.

Speaking of going out of town. I am going to Baltimore for my 18 month post op. My appointment is Thursday and I am pretty excited because I am doing so well. I am ready to start lowering dosages of my meds some more. This appointment is going to be more exciting then others though. When I fly to Baltimore this week I am not just flying in for my appointment. I am flying in to meet my heart donors family. My mom will also be going with me to meet them and to help me get through it all. We are both so excited. I have been talking to my donors mom off and on this summer on facebook and I know they are excited to meet my mom and me. We will be having dinner together at their house on wednesday night. Then on Thursday my donors mom will be joining my mom and me for my appointment. 

My excitement is through the roof, but I am also very nervous! 
Pray for us all as its going to be crazy emotional!

Aug 12, 2011

Keeping active

Again I am proud of myself. Dan asked last night if i wanted to go to the gym and with out a thought I said yes. I walked for 40 minutes did just over 2 miles. I played with the speed and incline a little bit more and didn't have any problems. It makes me feel more comfortable with having to do a stress test in February.

With all the stuff I did yesterday (except when I went to the gym) I wore my sketcher tone up flip flops and then I wore them again today when I took another one of dans uniforms over to the dry cleaners. Now if I could just get off this prednisone maybe the weight will start to drop off more easily.

A girl can only hope, right?


 <~~ the tone ups :)

Aug 11, 2011

No gym but Busy day!

I must confess. I did not go to the gym today. I did however get a lot done.


  • I went to get some paper work done for the car so when we have the last thing (dan has to make a call to get it) everything will be ready to register our car here in Mo. I was given the wrong information about the location where I needed to go so I drove to the office I was told to go to and found out that the place I needed to be was down the street from home. Because I was already driving I drove to the correct place and then walked from where I was able to park the car (about a block away). 
  • After getting that paper work I figured I was driving so I would go ahead and pick up the dry cleaning as I knew it would be more difficult to carry it all home now that it was clean in plastic and not folded up.
  • I also got 2 loads of laundry done and the one from yesterday put away. Today was sheets so I used those clean sheets to make the bed but haven't put the rest of the sheets away yet. That's the plan for after dinner.
  • After the hubs got home I went at got a mattress topper and a new mattress pad that would fit on our bed w/ the topper on it. 
  • When I got home I opened my new purchases and let the mattress topper expand.
  • I then made dinner -- stuffed peppers (which is still in the oven)
  • As soon as I got those in the oven I went and made the bed. A new mattress topper, a new mattress pad, freshly dry cleaned comforter, and freshly laundered sheets and blanket. I am now REALLY anxious for bed time as the bed looks sooo comfortable.
Now I am waiting for dinner to be done so I can eat. All I have left to do is for the other sheets and put it all away. 

Is it bed time yet?

Aug 10, 2011

A Step in the Right Direction

I am so proud of myself. I have gone to the gym 2 days in a row! One of those times (today) I actually went on my own.

Yesterday I walked for 45 minutes and did 2.06 miles burned just under 200 calories.
Today I walked again for 45 minutes and did 2.25 miles again burning just about 200 calories.

I wish it was more calories so I could eat super yummy food and not think about it. However I will probably still eat super yummy food and not think about it :)

I am really am proud of myself. I am going to start "practicing" the stress test routine so I wont freak when it comes time to "preform" for the doctors next February.


Aug 7, 2011


this was written in 2008 i think.



So I am finally going to quit being lazy (for a few minutes at least) and give everyone a little update.

Since I got out of the hospital I have been doing a lot of doctors appointments. I have seen my primacy care and my cardiologist, my physical therapist, a mental therapist and an eye doctor. I will be seeing a dentist on Thursday and my appointment with the Social Security office for my disability paper work is the 20th. I have had to speak with my cardiologist a few times about my medications but have been able to go with out seeing one until yesterday.
On Sunday, I got home from a day out and took off my shoes and my feet were very puffy (I had cankles). It was terrifying because that can be a symptom of Congestive Heart Failure. LUCKILY!!! It was just a reaction to the super dose of verapamil I am on. The FDA has approved/studied verapamil for up to 480mg, but HOCM (my disease) studies show that it can be helpful if you take 600mg. Therefore, I am taking the 600mg, but one of the side effects is swollen feet. I told the doctor that as long as it wasn't CHF then I am okay with it. It may not be the most comfortable thing in the world but it was nothing compared to the pain that my heart is in when I am on no medication. I do think that the verapamil is working but I do not know if it is working enough to stop taking the pain killers. When I finally get all my pain management stuff together I will hopefully be able to stop taking the methadone and try something a little less addicting.
I have also seen a case manager who has been slightly helpful but also a bit of a headache. I am glad that the doctors warned me about it but I think its ridiculous to have people that are supposed to help that just don't get it. I had a referral in for cardiac rehab and somehow when I called the central appointment line to make other appointments they made me an echo when I asked about cardiac rehab, it made absolutely no sense. When I went in for the appointment (i didn't know it was an echo until I showed up) they explained that my referral was in there but didn't looked like it had been sent to the network. The "network" is doctors in the area that accept Tri-care, referrals get sent to the network when the military hospital can't see you themselves. I wasn't exactly sure how to fix this so I figured I would try my case manager. She did not get the problem at all and instead of looking up my referral she just told me to get a new referral. I was so pissed! So instead I decided I would call referral management. The lady I ended up speaking to knew my name from helping my case manager with my pain management referral. She was very helpful and got everything straightened out. However in the end we found out that a referral wasn't needed for cardiac rehab, just a written prescription. Then I called my primary care asking for the prescription he never called me back, so when I went to the cardiologist for my feet yesterday I asked about it and was told that with my disease and my heart the way it is, the rehab was a bad idea. So all in all, it was pointless but I did learn that even with a case manager you really have to do things by yourself.
As for the issues with my pain management, Tri-care referred me to a doctor that is not actually taking patients for anything except injections. I called my case manager and she spoke with referral management and got a list of doctors that I could go to. However, to get an authorization code the doctor has to approve to accept me. Because of this we had to send my records out to multiple places in the area and are still waiting for a response.

On another note, the past few days have been pretty good...until today. On Saturday, Dan, Jeremy and I went to the Home and Garden show. We got tons of information and entered a lot of drawings. The only bad thing is that because I put my real number so that if we won they could call, they are calling me CONSTANTLY!! to make appointments to show us their products. They call two or three times in a row then call again later, it is very annoying especially when I can't answer the phone.
On Sunday, I went to church with my friend Krystyn. Krystyn and I have known each other for a long time as we both grew up going to the same church in California. Her church was very different from what we are used to. First Baptist was(is) a very traditional church. The church she goes to now is much more contemporary. We then went back to Krystyn's for lunch with some friends that she wanted me to meet.
OK, so i didnt put the 2 layouts together but instead just adjusted this one enough to be close to what i wanted. Now I just need to start posting more often!

change

trying to change my blogger stuff... i like different parts of 2 layouts and am trying to figure out how to put them into one layout.. its a headache.. ugh! so dont worry about my page looking different a lot :)

Mar 21, 2011

BTW,
its been 10 years this month since I had my first hit of Ventricular Tachycardia.


Had it on my spring break trip.. 

Its been a while since I wrote anything on here..
 I am doing alright. Having issues with some of the medicine still which right now is bothering my stomach. However because I was rejecting a little bit at my 1 yr appointment I have another appointment this week, so meds will be looked at and changed. Just wish my stomach wasnt so yucky. I also wish that my kidney function will get better with a different medication.
I am a little nervous about this weeks appointment but I know that with whatever results I get it could be worse... i could have my original heart..or be dead.. so that helps w/ my anxiety/nervousness.

Just wish it was saturday so I can have my results and not stress about it.