Thursday, July 31, 2008

Engagement rings

This is a fun happy blog!!!!

Here are two pictures of engagement rings that I saw and absoluetly fell in love with!!!!
Both are heart shaped diamonds.



The second one is kind of hard to see but it is a heart diamond with a small oval diamond below it. They are both gorgeous!!!

now to find the man that will but me one....HA!!

Wednesday, July 30, 2008

Just some more thoughts

Well since I am back to work I have all this time to think on the turnpkie in the morning and at night. So of course that is what I do...cause that is what I do best haha!!!

So I have been thinking for a few days about possibly returning to school to get my Master's degree. I wouldn't go back until after I went out on SSDI though. I don't want to run into an early grave just for schoolings sake! I would want to either study English/writing or American History. I am leaning more towards History if I do decide to go back. I have also been looking into a few colleges to see what is out there. If there was a good college that I could take classes online I would do that, but I can't find any that offer my major of choice. So far the only on-campus school that I have found that I like is West Chester University. I visited the campus a few years ago and I love it. It is kind of far away though. Villanova has a History program too that is outstanding but all the classes are night classes. Which is ok, but I would like to take a few during the day too. But we will see. WCU is also a lot cheaper than Villanova. But Villanova is about 30 minutes closer. Also, I will barely be able to make my car and insurance payments, so I am not sure how on earth I would be able to pay for it when I am not working. I already have a boat load of student loans and I really don't want to add more.

SO then I got to thinking about the education that I already have. I have my Bachelor's in Interior Design and I have yet to fully use it. Yes part of me is scared to work for a design firm because I have been out of school for so long that I would have to take a pay cut to work at the beginner level in a firm. So I have stuck with the architectural end of design. Which I still love just not as much as interior design. Also, I have ALWAYS wanted to design casinos and hotels. It is my dream job!!! And there is this firm in Center City that specializes in those fields. They have done alot of work for Disney and in AC. Perfect for me...except that they require more hours than my body can deal with. Which brings me to the point of this little blurb. Transplant....again. Only this time it is a for tx blog.

If I were to go through with the tx and everything went well, within a years time I could get back out in the work force. That means that I could work for the firm I have been eyeing up for 3-4 years now. How cool would that be? Obviously they would have to know about my tx because there would be a huge chunk of time where I was not working and I would need to account for that. But that is ok. They can't deny me the job for the tx, just lack of experience. But I could also deal with working at the beginner level at that point in time because of having so much time off. And in 3 years my jeep will be paid off so that is one less bill to worry about.

So then I started wondering again. What if I continued to work full time up until I was evaluated for a tx? This would give me plenty of money to pay off everything and save up some too. Plus I would be able to keep my health benefits this way. And I could COBRA the benefits after leaving so I could have them pay for my tx. Seems like a good plan...but only if I decide yes for tx.

It is one thing to work your arse off up until evaluation, knowing that you will most likely have a ton of time left afterwards to live. Though it isn't guarenteed I know that. I know full well that I could die during surgery or reject shortly after and die. But let's look at the positive aspects only :) If you assume that you will live 5 years after tx then working up until eval is not that bad. However, if you think you are going to opt for tx and then decide not to, you have worked that long for nothing and now you are crappy feeling and can't live life.

So how do you decide what path to take? That is purely rhetorical mind you. I certainly can't answer that question and I know no-one can answer it for me.

Well I am sure there will be more on this subject to come. I plan on talking to my DR about tx next time I go. not because I need one but because I want to find out what HIS criteria are for recomending it.


Monday, July 28, 2008

My first day back to work

It went great!

ok thats it haha!!!!

Just kidding!

No really though it went really well. Everyone was excited to see me which made me feel really good. Soooo many people were like "we are so glad to have you back". It really does help a person and boost their ego!!!! And the one principle, head architect for those less informed haha, said to me after telling me why my cubbie mate got canned that everyone is excited to have me back because its hard to find good help these days and that it is a complioment :) I was super stoked because this is the one guy I was not to sure if he liked me or not. But apparently he does!!

It was great being back and feeling needed and like I was doing something useful with my time again. I liked being off but at the same time it gets really boring when there isn't much you can do. I like having purpose, having something to look forward to every day even if it is "just" work. That is one of the reasons deciding to do part time is so hard for me. I love being there every day. I may not enjoy the commute and I may get annoyed or bored some days but I am always doing something worthwhile with my time. I am doing something that makes me feel "normal". I am doing something that makes me feel good. I can see what I have done at the end of the day and it makes me feel great. It makes me want to work forever.

Ohhh how I could go on and on about my troubles of having to decide when to stop working full time. But I shall not bore the 3 readers of this blog ;)

Nite all and pleasant dreams!!!!

Sunday, July 27, 2008

Concert last night

OMG we had a flipping blast!!!! Well I know I did! I absolutely LOVE Staind and 3 Doors Down so I was in a state all night watching them and singing along. Just facing forward, singing, letting the music fill you, not knowing or caring what is going on behind you. It's the perfect concert and the reason I love lawn seats. You don't have to worry about being confined to a seat in one spot. You can sit, stand, lay, relax, do whatever you please.

The show itself was awesome. Staind rocked! They are just so good at what they do. I have seen them numerous times and it never gets old! I was really hoping they would play "Zoe Jane" but they didn't. Its ok though. I'm listening to it now haha! Their new album comes out August 19th and you can bet I will be there grabbing it up!!!! Everyone was sitting down through their performance so I stayed seated too. Still can sit-dance to all the music. :)

Of course 3 Doors Down rocked! They were the highlite of the evening. I love them, probably one of my favorite bands. Well not probably, they are haha! Great performance, great lighting affects, great pyro-technics! For these guys everyone stood so I had to stand if I wanted to see! Fine by me I stood up and just rocked with the music. I love just letting it fill you. Ugh its so great! They played a few newbies from their new album, I knew them of course haha! And some oldies like Kryptonite. Then of course I was hoping they would play "Here without you" and they did!!!! God it was awesome! I love that song! Almsot cried too, but thats another story :)

We went for Pat's cheesesteaks afterwards and it was yummy! Then home to bed for me so I can rest for my first day back to work tomorrow!

Friday, July 25, 2008

Some good News

FROM the Cystic Fibrosis Foundation's website:

Genetic Non-Discrimination Act and Newborn Screening LawsPass Congress
May 1, 2008

Basically this article is saying that the new law will make it illegal for employers and insurance companies to deny employment and health insurance based on genetics. The new law, called GINA, will protect people with CF and also those who carry the gene but have no symptoms. President Bush is supposed to sign the bill into law soon.

Five States Step Up Efforts to Screen Newborns for Cystic Fibrosis
More Than 40 States Now Provide Routine Testing for Life-Threatening Disease
July 11, 2008

So far there are 40 states, and now 44 with the addition of West Virginia, Kansas, Maine and Arkansas, that require newborns to be screened for CF. New born screening of CF makes the chances of that child living a more normal and longer life that much more plausible. Utah will also begin screenings in 2009, making the total number of states 45.

New born screenings can save hundreds of thousands of dollars on testing and doctor/specialist appointments when the child is known to have something wrong but the cause is not known. It will also save hours of restlessness and heartache for the parents who don't know what is wrong and don't know how to help. Though a CF diagnosis is not the best thing in the world it is better to know from the get go then to spend years trying to figure out what is wrong. Knowing right away can give the child the best possible care.

PA is NOT on the list yet!!! We can change that by writing our congressmen and asking them to fight for it. So if you are interested do it!!!!!!

If you live in Bucks you want to write to Patrick Murphy:

Or check out your local reps page so you can write him/her!!!!

Thursday, July 24, 2008

Officially Banned

Well it seems I have been banned from

Good riddens!!

I knew it would happen when I posted a blog saying I wanted to let people know about my new blog here and I deleted all my old blogs from there. Whatever!!! I have a new forum to be a part of that isn't all psyched up on commercialism and lets me be me.

So SO LONG!!!!! :P

Wednesday, July 23, 2008

Today's Clinic Appointment

It went fairly well. Pretty much how I expected it to go. My FEV1 is at 40% right now. I checked and it is 1.26L. I was at 45% FEV1 last time but no idea what the L were. So that is a significant drop, but nothing that I can't bring up (hopefully). My weight also went from 113 to 112, which I don't find alarming at all. It is summer and I eat a little less than normal so I expect to loose weight. And as long as I don't drop a whole lot I will be ok. The pain in the right side of my lung is a plug. There is a good chance that my numbers are so low because of the plug. It is hard to get some good air moving when it hurts to take a deep breath. When I was exhaling for the test I could feel my lungs and they felt different. Not like they normally do when I exhale for it, kind of like a balloon deflating where someone is holding the mouth of it almost totally closed so only a little air can get out. Very strange feeling I might add!!!!

He cleared me for starting back to work on Monday the 28th. So I called my boss and told him and I can't wait to start. I may have enjoyed the break and seeing Owen and James all the time but I am ready to get back to work. I feel so bored and useless just sitting around doing nothing all day!!

When we were talking about going back he almost seemed like he wanted to tell me know about full time. He had this hesitant look on his face. I was going to ask but I can't afford to not work full time right now. Once I am in my mom's house it will be different. I won't have to worry about rent so I can drop my hours and pay to COBRA my benefits. It sucks because I have a sneaky suspicion that I will end up back in the hospital before the end of the year. But if that happens then I will definitely start my part time routine.

That's all for now. I am sure I will have a bunch to post come Monday when I get to go back and get bombarded with all the "we missed you" and "how are you feeling" questions! LOL

Tuesday, July 22, 2008

Transplants (TX)

While I am not close to needing a tx I thought I would blog about it anyway. It is something I think about often, mainly so when the time comes I won't have to do as much thinking.

To be honest the whole idea of having my chest cavity opened and the old nasty CF lungs removed and replaced and with semi-new and healthy lungs scares the living crap outta me. The procedure alone is enough to make grown women cry, such as myself. Then I think about the afterwards. All the tubes, all the meds (yeah I should be used to meds I know), all the hours of rehab. It just makes me want to say "no" to a tx.

Then I think of all those things I missed out on in my CF life. Running without coughing, laughing without coughing, sex without coughing, a full day/week/month without coughing. Those things make the bad seem small. They make me want the tx. They make me want to jump up and down and say "God please take these old crappy lungs now and let me have new ones".

It may seem silly to some to constantly think about recieving a transplant, but when you struggle to make it to the top of your steps in your apartment, or you wake up with a coughing fit at 3am it doesn't seem so silly. For instance, right now as I am writing this I am half bent over in pain. Most likely it is a deep down plug in my lung that will come out with some extra poundings and 3% saline inhaled. But I could have this pain for days, or just hours. It's that uncertainty that makes this so hard/easy.

Quite a contradiction I know. But thats the thing. I want the uncertainty of CF to be gone, I want the pain, the coughing, the hours of treatments a day to end. But with that ending comes the uncertainty of transplant. The fear of rejection, the fear of catching a cold and developing an infection.

I know we can't live in fear, that fear keeps us secluded and doesn't let us LIVE. But sometimes it is easier to live in fear. To not worry about all that uncertainty. To not wonder if the pain from the surgery is going to be unbearable. I think that alone is my biggest fear. I worry about the pain. I'm not good with pain. Sure I have tattoos and have piercings but that isn't the same. They aren't deep inside the body, they are just surface pains. I get headaches constantly but that is remedied with Excedrin. The pain from tx can't be dispersed so easily.

Then I worry about paying for it. It is not a small expense. Luckily I have already decided that if I want a tx that I will go to HUP for it. Penn is a great hospital and my CF doctor is part of it and it is only 25 minutes from my home. There will be no relocation expenses. That alone is a huge burden, that luckily I can avoid. Will medicare cover it? Will the state and country help pay for it? Will I have to scrounge around to find hundreds of thousands of dollars to pay for it?

I guess when the time comes I can look into myself and see if I am prepared for more fighting or if I have fought as long as I can. That will be the biggest factor I am sure. If I am ready to hang up the gloves and let CF take me or if I want to keep fighting and hope that I get a few more great years out of it.

Saturday, July 19, 2008

My CF benefit back in May

I am copying this blog from an older blog that I have that I am currently getting rid of. So for many of you this is old information so just bear with me please :)

OMG the benefit was AMAZING! We had a HUGE turnout! By our estimations we had over 250 people there. We raised *drumroll* over $12,000!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Can you believe it?????????? Our goal was $8,000! We still have more money coming in to from friends that did fundraising at work. I am completely shocked and so happy!

We had the entance fee of $25 then we were selling chances for a 32" flat screen which most people bought at 5 for $20 and then we had 50/50s for $10 for an arms length (most people bought 1 or 2 arms lengths), then we had the Chinese auction with 21 baskets with tickets for $1 each. People were buying 20-40 tickets at a time!!! Then we sold jello shots for $1 each. People were buying 5 shots and giving us $10 and saying keep the change. It was so awesome! And we had a massuese (sp) there charging $5 for 5 minutes and $10 for 10 minutes (she kept the money though but it was nice to have her there). And we were also giving out tattoos for free. You will see those on alot of the pics I post hehe.

The day exhausted me and I didn't get out of bed until 1:30pm today haha! I was a nervous wreck for the first hour and a half because I had to give a thank you speech. Here is what I said:

I want to thank everyone for coming out tonight. It means a great deal to me and all the other people affected by CF. Thanks to generous people like you I have been able to do more than I ever dreamed possible. So from the bottom of my heart THANK YOU.

I know short sweet and to the point haha! I was so nervous even though I knew 90% of the people at the benefit! My mouth was so dry I stopped once and said "sorry I am a little nervous".

Well it was awesome to see all my friends and some of my family come out to support me and CF. It was such an amazing feeling! I was so happy to see so many people there. And to also see them reading about Lindsey and Tracy. And picking up donor brochures and taking them home. And reading about the donor myths I put on each table. Even if 3 people sign up to donate their organs I consider that a success.

As I stated before I was a wreck knowing I was going on stage to say thank you to everyone! I made a few people cry (the speech was so short I don't get it!!!). I met a man who stopped in to donate money who has a 5 year old daughter with CF. He was thrilled to meet me and see how well I was doing. He left his name and said next year if we do another to let him know and he will help and get lots of people to come. He said they usually do the Great Strides walk but since it was a Holy Communion weekend around here he couldn't go. Later on in the night I was in the bathroom and a lady came up to me and she said "I am so sorry to ask this but I have no idea what CF is". I told her it wasn't a problem and I gave her a shortened version of what CF entails. I was glad I got to educate someone.

Pretty much all night I was strapped to my IVs but I said it was good because then people see just what I go though and maybe we made more money because of it.

I was glad my brother and SIL came out too. I wasn't sure if she would make it since my nephew's birthday party was the next day but they did and they had a good time. It was hard at first with a lot of people coming up and saying they were sorry but eventually people stopped and they started to enjoy themselves.

We have so much food left over I spent all day today delivering some to people who wanted leftovers. I took some too since I never got a chance to eat any of it that night. I think that is about it. I took $1200 and will be putting it into a CD so that when I go out on SSDI and I am applying I will have some money to hold me over. That was the plan from the beginning. I got to keep the 50/50 and Chinese auction money. Fine by me...makes me feel a little better come the time for me to stop working entirely. Well I think that is it for now.