I want to be a bookseller

Last weekend P and I decided to take a drive.  It was New Year’s weekend and with three days off, he was starting to get bored and I was restless having everyone at home with me.  There were a few books I wanted to pick up so we decided to take a trip to our favorite used book store up in the Ipswich area.  We meandered up and when we pulled into the parking lot we saw the building was EMPTY!  The whole thing!  No used book store and no antiques shop below.  Just a sign saying they would be back after lunch…..no forwarding address, no we moved sign.  NOTHING.  I was (still am!) devastated!!!  We loved that place.  Not to mention finding a used book store that isn’t part of the Salvation Army or in Barnes and Noble is near impossible. 

As we drove away I had the very strong desire to open my own book store.  A quaint little shop here in our town where we would sell some new, old and maybe even rare books.  We could have a small little coffee station in the store and a lounge area to read.  Free wifi of course and I could bake some bread and make some jams to sell.  During the slow hours I could relax and crochet and read.  I wouldn’t have to have the store open 10am to 9pm like retailers; a reduced hour schedule like noon to 7pm would be perfect.  Maybe only a few days a week too.  I go have book club meetings and maybe even work with the library on things. 

I thought of it all.  I got totally wrapped up in it, even telling my mom she could move up here and work it with me. 

But it isn’t possible.  At least not right now. 

But WHY?

Am I just scared and using my health as an excuse?  Or would it really be a bad idea?  I love to read.  I would love to have my own shop.  I have the perfect location in mind.  I could find funding I am sure (grants for women owners seem to be a good place to start). 

But could I do it?  And should I do?  And will I do it?

Maybe…someday….maybe…never…

Amazing Difference in 3 Months from Exercise!!!

This is the story of a Cyster's desire to improve her body and her health.  This is a story with a happy plot line.  This story is not over yet.

Three months ago I joined a new gym.  I had been at my old one for a while but it was boring, I didn't like the atmosphere and I felt like a puny girl.  Then the end of February I found a flyer in the mail-room of our condo.  It was for a women's only gym down the street.  Closer than the other gym!!!  I decided to check it out.  It was a bit more pricey but it had a good vibe and they offered classes for teens which was perfect for my step-daughter.  I was hooked!  I signed up that day and have not looked back since.

With the gym membership (and an annual fee) you can get a fitness consult to see where you are body wise. It was $90 and you get 4 appointments.  I couldn't say no.  March 13, 2013 I had my first consult.  I was nervous.  I felt fat and gross and so out of shape.  I say I FELT that way because while I was out of shape, I was far from fat.  

Here are some stats from that consult:

Weight: 126.2 lbs

BMI: 22.4

Body Fat: 30.8%

Fat Mass: 38.9 lbs

Cardio Fitness: 28.9 (needs improvement - NI)

Grip Strength: 51.6 (Fair)

Push ups (on your knees): 7 (NI)

Sit and Reach: 13.2 (NI)

Plank: 11 (Good)

Vertical Jump: 7.7 (NI)

Fast forward to today.  It has been 3 months, and only 6 personal training sessions.  I exercise 5-6 days a week.  I do cardio for 4 days, strength training one day a week and then I also do Tone It Up.  I am eating better, I am working out, and I am seeing results (and I realize I sound like a dam infomercial!).  

Here are today's stats:

Weight: 121.2 lbs

BMI: 21.5

Body Fat: 28.4% (28% is normal)

Fat Mass: 34.4 lbs

Cardio Fitness: 37.8 (Very Good)

Grip Strength: 52.9 (Fair)

Push ups (on your knees): 25 (Very Good)

Sit and Reach: 22.86 (NI)

Plank: 11 (Good)

Vertical Jump: 12.7 (NI)

Now for the kicker:

I lost 14.25 inches from my body!!!

3/4" from my neck

1.5" from my shoulders

1.5" from my chest

2.5" from my waist

2.5" from my hips

2.0" from each of my thighs

I lost 4.5 lbs of body fat and decreased my Body Fat% by 2.4%.  

My biggest surprise is not the 14" that I lost, but the improvement in my cardio functions!  Granted, today I could not finish the treadmill test (they increase the incline and I insisted that once I hit 90% O2 we stop since my lungs are not fully cooperating), whereas last time I forced myself to finish no matter what.  But my recovery time for my HR was much better this time around.  

I knew I lost weight, I knew I lost inches.  But I had no idea the results were this fabulous.  My trainer asked if I wanted to be on the testimonial board and I said yes!!!  After 6 sessions to see such an improvement, it makes me so happy.  I realize now that the hard work IS paying off.  I may not get back to work, but I know I will be healthier, and if I keep this up, when I get a transplant, hopefully my recovery and chances of survival will increase with the added health on the rest of my body.  

I love this!!!

Reflecting on the past 15 years of my life

Fifteen years ago yesterday I graduated from high school.  So much has changed in those years...

Random highlights:
January 1998 President Clinton's "I did not have sexual relations with that woman, Ms Lewinsky."
April 1998, Animal Kingdom at WDW opened for the first time
May 1998 Frank Sinatra dies
September 1998 Google is founded
November 1998 Elmo's World launches
(source secondary source)

CF Related Highlights since 1998:
1998 Specialized clinical research centers are designated as the Foundation’s Therapeutics Development Network.
2000 Foundation-supported scientists map the entire genetic structure of the most common cause of CF lung infections — the Pseudomonas aeruginosa bacterium. Researchers can identify the function of specific genes and find ways to turn off the bad ones.
2003 CFFT-supported scientists at Structural GenomiX, Inc., determine the three-dimensional structure of a portion of the CFTR protein, opening the door to more drug discovery opportunities.
2004 CFFT-supported studies in Australia and at the University of North Carolina show that hypertonic saline helps clear CF mucus. It is proven to improve lung function and reduce hospital stays, and becomes a therapeutic option.
2006 VX-770, an oral drug in development by Vertex Pharmaceuticals, Inc., with support from the Foundation, enters clinical trials. VX-770 is one of the first compounds to attack the root cause of CF, and works at the cellular level to open chloride channels that do not function correctly in people with the disease.
2007 Vertex selects a second potential drug known as VX-809 for development. Like VX-770, VX-809 addresses the root cause of CF, but it works by helping the defective CF protein move to its proper place in the cell.
2008 The Foundation and Vertex achieve a “proof of concept,” showing that it is possible to treat the root cause of CF. During Phase 2 studies of VX-770, trial participants, all of whom carry the G551D mutation of CF, show unprecedented improvements in key signs of the disease.
2010 The FDA approves a new inhaled antibiotic called Cayston® (aztreonam for inhalation solution) for the treatment of CF. Developed by Gilead Sciences, Inc., Cayston offers a much-needed antibiotic alternative for CF patients who battle recurrent lung infections and develop resistance to existing antibiotics.
2011 The Foundation announces that Phase 3 clinical trials of VX-770 showed profound results. Those receiving the drug demonstrated the highest increase on a lung function test seen in any clinical trial of a CF drug. Vertex submits a New Drug Application to the FDA for VX-770 under the trade name Kalydeco™.
2011  Results from the first part of an ongoing Phase 2 trial testing Kalydeco in combination with VX-809 show promising results in people with the most common CF mutation, Delta F508.
2012 The FDA approves Kalydeco™ for people with the G551D mutation of CF ages 6 and older. The drug is the first to address the underlying cause of CF and opens exciting new doors to research and development that may lead to a cure for all people living with the disease.
2012 Results from a Phase 2 trial of Kalydeco in combination with VX-809 show a significant improvement in lung function in people with two copies of the most common CF mutation, Delta F508.
(source)

For me:

I am not where I had expected I would be 15 years post-graduation.  I thought I would be an interior designer working at some high level company in Philadelphia, married with kids, living in a beautiful home in the suburbs.

I am not where I expected I would be, but I am where I WANT to be. My health may be shit, my ability to work may be gone for now, but I am married to the most amazing man I could ever dream of and I am the step-mother to two kids.  They may not be my own flesh and blood, but they I do everything in my power to make sure they will be contributing members of society, and good ones.

I may not have the biggest house, or hell, even live in Pennsylvania anymore, but I have a great life and I would not trade it for the world!!!

I never thought that 15 years later I would be living in Boston.  I never thought I would have married and honeymooned in WDW.  I never thought I would have my baby making parts removed to reduce the risk of cancer.  I never thought I would ever be referred to a double lung transplant clinic.  I never thought I would ever meet the man of my dreams online, THANKS to CF!  I never thought I would make so many wonderful friends because of this retched disease.  And I never thought I would ever stop working.  Then again, I did always think I would be dead at 26 or by 40...so...

Self Perception

Don't worry this isn't another weight related post.  This one is all about the inside.

With Kalydeco's wonderful results and the start of phase 3 for Vertex 809 (combo med for those with DF508)  with amazing results in phase 2, its a possibility that we could stop CF progression where it is right now in some patients and perhaps even reverse some of the damage.  This is a huge step in the right direction to make CF much more manageable.

But it brings into ones mind some thoughts that wouldn't be there otherwise.  For me these thoughts always played a part deep down in my thinking.  I have often wondered what a "cure" would mean to me.  Disclaimer Kalydeco is NOT a cure.  It restores function to a non working protein in the cell.  CF is still CF, this med just helps the underlying cause and helps to fix it.

I hover around 40-43% FEV1 when I am healthy.  My shortness of breath is daily.  My ability to function normally has decreased drastically over the past 4 years.  Yet this new med could help me gain some of that all back.  I could potentially go back to work before receiving a double lung transplant.  I could stay off that list for many many more years.

However, there is also the negative side to this thinking that we must dive into.  What if I don't last long enough for 809 to be approved and started?  I am not content where I am right now, feeling like my life is on hold until I get a transplant, whether that is 1 year or 10 years from now.  I feel like I have stopped everything and I am not truly living.  I struggle with wanting to take my meds and doing everything by the book because if I don't I would get sicker faster and then transplant could come sooner and I could start my life over.  But we all know that transplant is not a guarantee.  I might not survive the surgery.  Or I might not make it home after waking up and trying to learn to live with new lungs.

But having my original lungs offers more of a guarantee to life than transplant does.  What I need to do is change my perception so that I can become more comfortable with my life as it is now.

I need to look at what I AM doing and focus on the positives there.  I need to step back and realize that I AM living my life right now, in preparation for when I can breathe again and do everything I have always wanted to do again.

I am a stay at home wife/mother who goes to graduate school and takes care of her health on a daily basis.  I am doing what I need to do now so that in 5 years I can do what I want to do then.  My life is not on hold yet.  My life is progressing different than anticipated but it is still progressing.  And I need to focus on THAT and not the what ifs.

Kalydeco could allow me to finish my degree and get a job before I get transplanted.  Or it might do nothing and I will still need the transplant.  But I have to continue on as if I am going to live forever and one day live and breathe with shiny new healthy lungs.

Something to do with Myself

Lately I have been feeling really antsy and bored with my life.  The whole not working thing has finally caught up with me.  Not too shabby that I have been on SSDI for almost 2 years now and just starting to get bored.  Of course last year I did 9 months of work and I have been in school, so that lessened the boredom load.

However, the past few weeks I have just been on edge.  And it isn't a depression type edge where I need my meds again.  Its just a feeling of not doing anything and doing the same things over and over.

I thought not working would be absolutely FABULOUS!  And it was for a while.  I worked on my health, I crochet'd, I read a bunch of books, I went back to school, I started cooking dinner most nights, I got to sleep in every day, I could visit family in PA whenever I felt like it.  But then you watch the same shows over and over again.  You crochet enough that your hands hurt.  You read as many books as you can.  You are broke and can't take those trips to PA as often. And then you have nothing.  Believe me, there are more books for me to read and more crocheting to be done, but I need something else.  I need to be doing something that takes me out of the home.  Having more friends would really help, but I am at a disadvantage there.

So instead, a fellow Cyster hooked me up at a local farm that does lessons for the disabled, on horseback.  How awesome is that?!?! I went today to shadow her so I could get an idea of what goes on.  Especially because the website mentions jogging with the horses for short stints.  I was a bit nervous about that, but after being there today I am confident I can handle it.  It felt great being around the horses again and to be doing something productive!

I have to send my application in and then I can start.  Just once a week I think for now as I don't want to overdo it.  I was there almost 2 hours and that was plenty for me.  Not that I wanted to leave per say, but I could feel myself getting tired.  There are some hills to walk up, nothing steep or long, but they do take their toll on you.  Especially since I am sore from all the exercise I have been doing.  I am really looking forward to starting and can't wait to help make a difference!

Exercise Regime - Days 5-8

I may not have posted about them but I exercised Monday through Thursday again.  30 minutes each day on Wii step aerobics.  Monday I only did 20 minutes because I was feeling under the weather.

Still have not lost any weight.  One day I am down 3lbs, the next day I am back up 2lbs and the day after another half pound.  The test will be the doctors in April!

3 more weeks of this and my hair can get done!!!!!!  Very excited about that!  And if I stick with it through May, I will treat myself to the tattoo I have been wanting to get in Bree's honor :)  I figure if I can exercise till May then I can get the tat on the anniversary of her death in remembrance of her.

Day Two - Exercise Regime

Two days in a row!  That is a first for me!!!

30 minutes of step aerobics today as I watched last week's NCIS-LA.

Off to shower and eat a healthy lunch.

Too bad the little wii guy said I put on 1.3lbs since yesterday....stupid machine lol

Day One - Exercise Regime

Today is day one of my new exercising self.  I NEED to exercise.  Especially with no insurance I need a way to stay healthy so I don't end up sick before my Medicare kicks in June 1st.

I want to log each time I exercise so you all can hold me accountable.  On Facebook a few of us CFers are in an exercising group for CFers (Exercise Accountability) but it hasn't pushed me the way I was hoping it would when we started.  But maybe facing all of you I will be more willing and determined to do it.  Also I have set a goal and reward for myself.

By March 30th I have to have exercised at least 3 times a week each week.  If I reach this goal I am allowed to get my hair dyed by the professionals.  I printed out a calendar so that I chart my results.

So for day one:

20 minutes of step aerobics on the wii fit.

I am OFFICIALLY a Graduate Student!

Congratulations!  You have been admitted to the School of Graduate Studies at Salem State University.  Your acceptance is a tribute to your credentials and potential for success, and we hope you join our dynamic learning community.


Its OFFICIAL!  How awesome is it to receive that on your 31st birthday :)  fabulous present indeed! :)

Lazy or Tired?

How do you determine which is you?

This is something I have been wondering all week as I slept 13+ hours a day.  And even taking naps.  Spending more time asleep during the week than awake can make one wonder WTF is going on.

While I am FINALLY feeling a bit better, more energy, less mucus etc, I still wonder why I slept so much.  And if I was just being lazy, or if my body really did need it. 

This feeling hits me quite a bit.  And not just with sleep.  With other things as well.  Like exercising, taking the sheets off of E's loft bed and washing them, walking the complex etc.  Sometimes I wonder if I use my CF and being tired or lacking in energy as an excuse.  But that I use it deep down inside so I think I have no energy when really all these years of slowly not being able to do things has made me lazy.  For example, I hate steps because they make me cough so I avoid them.  Yet when forced to walk the steps (like last weeks clinic when the garage elevators didn't work and you didn't know till you parked on the top level) you can do it, albiet slowly and painfully. 

I could walk the complex daily, but I don't.  I could drive to the lake and walk parts of it, but I don't.  I really could get back on a horse and ride, but I don't.

But WHY don't I? 

Am I scared of the result?  That I will realize I CAN do these things?  Or that I will realize I really CAN'T do these things?  Which is it? 

The only way to find out is to actually do it.  And this summer, my goal is to walk parts of the lake when its not 100 degrees out.  Maybe I can start there and see where it leads me...

The need to exercise

I posted on CF2Chat a couple days ago about my absolute distaste for exercising. And also asking what others tell their doctors about what they do for exercise, if they are like me.

I'm not a couch potato by any means. Yes some days I don't do much but sit on the sofa watching TV and crocheting, but really I'm making money while doing that lol. I clean at least once sometimes twice a week. Laundry is two days a week. Food shopping at least once a week. This is at least 3 days of exercise, if not in the traditional sense. Then of course there is sex. Might not be the full 25+ minutes of a high heart rate exercise that is recommended, but it certainly gets ya going!

As we were all bouncing stories and ideas around, a good point was made. I need to find something I LOVE to do that is exercise. But what? Well the only exercise based activity I love (besides sex) is horseback riding. However, I haven't done it since I was a junior in high school - 12+ years ago. I was a show jumper. I've got ribbons galore and riding gear that sits lonely in a tote (gave my trunk to a non-profit riding facility for the disabled - love Craigslist!). My lung functions are lower than they were then and so is my tolerance for just about everything. I'm talking 4 hours of sleep sustained me for a day easily back then.

So how to I get myself ready to tackle those jumps again?

First I need to accept (and this is the hardest by far) that I might not be able to get to that point nearly as quickly as I did when I was 16. That I might have to start out walking for the first 5 sessions to build up both my lungs and my leg muscles.

Second I need to start some basic training. I don't mean going to the gym for hours a day, but maybe just a walk around the complex. I walk to the mailbox a couple times a week so maybe I should start taking the long way.

And third I need to find a facility that offers lessons during the day and is fairly close by. And preferably decently priced.

Luckily we are approaching winter. For me, the cold is very harsh on my lungs and unless the facility has a heated indoor ring, I'm out till at least April. But that gives me 4 months to work on my muscle toning and stamina. Someone mentioned the YMCA as a good place to start. Usually programs are cheap and maybe they will even have some day time pool classes I can take.

I need to treat myself like a child...offer a reward for a job well done. Perhaps a new shirt for 2 weeks of exercising. Or a new book. Something that will give me a reason to get there besides just the possibility of riding again one day. Being able to get back on a horse is a post-transplant goal of mine. But why can't I make it a pre-transplant one instead?

Me in Culpepper VA when I was 15

Yesterday I started my new exercise routine. My awesome Cyster Tara sent me to this great site…it’s called couch to 5k. GREAT program! It might take me a bit longer than 2 months to get to 5k but dang nab it I WILL get there!!!

Can I tell you just how AWESOME it feels to JOG on the treadmill?!?!?!? The first week calls for 5 minutes of brisk warm-up walking followed by 60 seconds of jogging and 90 seconds of walking for 20 minutes. I can do 60 seconds of jogging and usually do 2+ minutes of walking to get my heart-rate and O2 sats back. My HR is getting kinda high – maxing so far at 160+ and my O2 has dropped as low as 84% while jogging. Obviously I need supplemental O2 when jogging. I will have to call and ask about that this week. I have my concentrator in my room for sleeping but from there to the treadmill in the garage is more than 300 feet. TOO far to run tubing!

I feel fantastic having it set at 3mph for my walking and then 3.2 for my jog. By the time my 60 seconds are up I need a break. But it is a start!

Today was a little rough compared to yesterday. I went as long as 2.5 minutes in between to catch my breath and get good numbers back. Plus it is so muggy and hot that after one round of jogging I an DRENCHED in sweat! Never done that before from working out lol!! It also doesn’t make me cough while jogging, but as soon as I stop I start up. I keep water with me to hydrate myself and the combo has been helping me move some good goo out!

I love that I am jogging though. It gives me a reason to go out there and DO it. With just walking I find myself making excuses but now I have a WRITTEN GOAL. Not just some “well I need to do this” type of goal. I don’t care if it takes 4 months to get to this goal. It will happen. And when it does you can guarantee that my arse will be celebrating!!!

Last night I went out with ma girls and we were dancing! Yes I was dancing! YAY!!! I didn’t last too long since it was getting towards the end of the night. But I did it. Tonight I am tired! I was out late and up early to do my IVs. It was kinda fun “shooting up” in the bar haha! As soon as my last treatment is done at 12 I am off to lala land for the night…I can’t wait!!!!!!!!!!!!!

One, Two, Three...GOAL!!!!!!!!!!

Well I have decided that this round in the hospital I will come up with some goals and stick to them. I want to stand by them this time. I want to get healthier. I don’t know why I slack off after a few weeks. I guess I just start thinking that it isn’t helping so why bother. But I never keep going to see if it actually WILL help. So from now on I am going to!

Here is what I want to accomplish by the end of 2009:

**Be able to walk on the treadmill at 3.0 mph (I made it up to 2.5 then all of a sudden my O2 dropped to 82 and my HR hit 176 so I stopped and now I do 2.2).
**Be off my anti-depressants (momma needs her sex drive back!)
**Lung function at or around 50% (I just wanna breathe and get out of the dam 30s!)

I seem to slack off and just not care after a bit. I can’t be like that. I can’t just ignore my health. If I take care of myself better I can work longer and be more independent longer. I don’t know why I get into health ruts but I need to stop. So this is my proclamation that I WILL get healthy by the end of 09 so that 2010 starts off with a bang!

Having a bad "baby" day

Ugh I am so bummed out today. I had this amazing dream last night…extremely weird but amazing. I was pregnant, only about 4-5 months and I had a tiny little belly. The weird thing was when the baby would kick I could see the whole foot push out of my tummy (still inside I would only see the imprint through my skin) and it would bend me over cause it was uncomfortable. But I could see that little tiny foot like it was my own. I was very happy to be pregnant in my dream even if I was dreading telling my CF dr about it. It was so real. I remember rubbing my belly and talking to it. Being SO sure that it was a little boy because of how strong he was kicking.

Then today I came into work and my cubby buddy and I were talking about her pregnancy and she was showing me this magazine that has the baby at different months and what they look like. She starts her 6th month next week (I think) so she showed me what little Baby M. will look like. It’s a baby!!!! And adorable!!!! You could see every little feature on its face and see the hands and feet and arms and all. It made my heart hurt....

I know I have accepted the fact that I will never have a baby of my own but I still want one. I still long to know what it’s like to feel your child growing inside of you, to feel the first kick, the first roll over, the first everything. I want to experience all those things. I wish I could know what its like to go through labor and look down on your child for the first time when the DR hands them over. I wish I would know what its like to watch as your child grows and rolls over for the first time, crawls for the first time, walks for the first time and talks for the first time. I can see these things with my friends’ children, but it is so much different when it is your own.

I have never spent so much time with someone pregnant as I do now. Sure I have had friends and family pregnant but I am with my cubby buddy 40+ hours a week. When she feels a kick or something she tells me. I adore when she does, since I won’t get to feel it myself, but it does make me hurt. It’s a reminder just what CF is taking from me. Yet another dream of mine down the drain and out the door. I am super excited for her and I love hearing about everything. I can’t wait until she is really showing and I can see it all (perhaps it will make me glad I’m not having kids LOL). I love that I can experience it second hand and I love that she and I are close enough that she will willing to share it all with me.

I don’t like dwelling on the negative but today I can’t help it. I have 3 pregnant people in my life right now, and one who just had a miscarriage. It’s all around me, everyday. What I long for and what I desire most, and how I will never have it.

Please don’t tell me that I might someday. No, it will never happen. I am too sick to have a baby now and after transplant it is frowned upon and I wouldn’t risk my life and the life of my baby to achieve a dream like that. Today is just one of those days where I can’t put the pain behind me and forget about it. Today it is staring at me full force and I am trying to stare back and win the battle. So far, pain is winning. My heart hurts and my head is yelling at me.

Considering SSDI

I’ve been considering SSDI A LOT lately. Way more than I should be I’m sure. I am just so freaking tired of getting up at 5:15 four days a week and not being able to sleep 8+ hours a night because I can’t fall asleep. However, I am hoping that when I get into my mom’s, things will die down in my head – since most of my sleep issues are self inflicted. I did buy Melatonin like everyone suggested and took that. It worked but I took too much. Now I am afraid to take anymore, even making the dose smaller, because I am exhausted. Though, I am considering taking it tonight so I can be sure to sleep.

I also keep thinking about everything that I could be doing instead of sitting here at work 10+ hours a day. I don’t get to see my friends nearly as much as I would like. I don’t get to see my family nearly as much as I would like. And I don’t get to do the fun hobby things that I want to do. Also, I’m scared to death to go back to school because I’m afraid that I will run myself ragged and make myself sicker. I’m worn out and worn down and so so so bloody tired!!!

If things were different and I could sleep on my days off maybe I would not be so inclined to go out on disability. Unfortunately, if I sleep late on Wednesdays then I can’t fall asleep that night and it turns into a huge snowball effect. Same with the weekends; Saturdays I can sleep in but one day out of 7 is not refreshing.

This boring, never ending project I’m working on has a lot to do with it as well. I’m sick of looking at it and see no end in sight. Every morning I get up and dread coming in to work on it. I can’t do work I don’t like, I’m not made of that material. I need to like it and right now I don’t. I don’t mind it so much; I just don’t want to do it anymore. I like the job itself, just not this aspect of it.

If I can last until the fall I will be ok financially. By then I will have been in my mom’s a few months and she will be back on track. I will be getting money in November from a CD I invested which can help pay for COBRA. I also have the money from my 401k that I am more than willing to use to help make the payments as well. Furthermore, I am hoping that maybe I can go on LTD until SSDI kicks in and then cancel the LTD and do straight SSDI. Getting a part time job that pays a couple hundred more a month would really help too. I wish I could talk to my LTD company without raising any red flags and get all my questions answered.

I just need to make quite a few lists to get me thinking. And figure out what I can afford and can’t afford. What my options are and if this is feasible at all.

A part of me wonders if I am just being lazy and not wanting to work, so I’m using this as an excuse. But thinking about it, is it really that big of an issue? Why should I care if I’m lazy and don’t want to work. I don’t have the next 45 years to work to save for retirement, so why can’t I spend what I do have left, retired? I wasn’t brought up that way, nor do I have that mind frame of working is why. I’m a hard worker; I was taught you don’t get what you want without working hard for it. So how do I change that frame of mind and accept that I might have to stop now, while the going is good. Or that I might not HAVE to but I should WANT to.

This is a huge step for me since I was so hell bent on working until my Jeep was paid off. I still have 2 years left as of this month. I refuse to give it up and would much rather default on my credit card than give back my Jeep. But I also have student loans that need to be paid. Those I am sure I can get the payments down if I am not working and only collecting.

Another issue in my head is being able to get loans for school if I do this. Will they allow me to borrow money knowing I am not working and might not go back after I finish school? I will go back to work as soon as I can after transplant, but who knows how long until that happens. How can I be sure I will be able to afford school? Getting grants would probably be easier than when I am working so perhaps I won’t have too much to worry about.

As you can see I am mighty torn. But I am finally at a place where I am truly considering it and might even be excited about it. I still have a lot of things to work on but the road isn’t quite as bumpy as it once was.

I'm like a french fry...

...burnt to a crisp and covered in salt!

I spent the day at Devon. I go every year, by myself. It's always the weekend of and weekend after Memorial Day. I had completely forgotten about it until yesterday when my co-worker mentioned it. Memorial Day being so early this year through me off!

I adore going here. The smells, the sights, the sounds. Everything is just fabulous! I go alone. I will never go with anyone. I have no desire to. It's something I do alone so I can wander at my pace, sit as long as I want and do whatever I please. I never buy tickets to the grandstand since I enjoy relaxing in the sun taking pictures, right along the rail. Some years I wander around the grounds but mostly I watch the Oval and then walk back to look around the shops. I never go in. it's on the Mainline in PA and it's horse people...very expensive. Maybe someday when I marry that DR or Lawyer haha! One of these days I might actually stay for the whole day. But it is usually from 8am until about 10pm. A long day!

Devon has been a dream of mine since I was little. It's huge! People come from all over the country to show here. My two Aunts that have farms come every year to show with their students. They don't personally show anymore but they are the trainers for some that do. It's so very prestigious and you get to say that YOU rode in Devon. God I want to be able to say that. I guess my sorry ass needs to start riding again huh?

I still get that little tingle in my tummy when I can see that the rider is going to nail the jump, or the pull when it looks to be too short. I count each and every stride between the jumps and nod my head ever so softly as the horse canters along. I find myself biting my lip in anticipation when it comes down to a few seconds. Or feeling let down when a horse hits the rail and knocks it off. It's so invigorating for me. I love it.

Body and soul I miss riding and being a part of it all. I miss showing. I miss walking around in my breeches and boots. I miss buying saddle pads and treats. I miss the feel of the horse beneath you, how the muscles tense when going over a fence, the exhilaration when you nail a fence that you have been having trouble getting. Knowing that you are doing something you love.

Someday.....

Anyway...on the way home I decided to swing by the Battle of the Bulge Memorial. I didn't know it was inside the Valley Forge Military Academy and you can't get in (at least not on the weekends and I didn't feel like driving around to the other entrances) LOL. Oh well. I drove past it anyway and saw the back of it. And I saw some cute cadets. Maybe that's what I need instead of a DR or Lawyer, a military man!!! Mmmmmm yummy..........

Some pictures I took! Enjoy!!!

Devon Horse Show

The Dixon Oval

Leadline...ages under 4 and then 4-5 year olds. So freaking cute!

Lemon Stick....Devon is not complete without one

Someday maybe I will be doing this....

My burnt knees...LOL

Acceptance

The turnpike was backed up on my way from work today so it gave me more time to think…cause we all know how much I need that!

I was thinking about how I am moving back in with my mom soon and how this time last year I was so royally against it because I was afraid it would screw up my dating game. Well I haven’t had a date since this time last year so obviously something else screwed it up LOL. But that’s not the point. The point is that I have accepted being single. I have grasped it by the horns and I am embracing it like no other.

Quite frankly I don’t think I have ever been so happy in my life. I have my “days” here and there like everyone but not like before. I never worry if “he” is gonna call. Or if I will find the “one” anytime soon. I could care less! I ENJOY being single. I enjoy my freedom. I relish the fact that I don’t have to call anyone, see anyone, explain myself to anyone. I can be me, good old fashioned, kooky me.

I think back to when I was “crushing” on all those guys. I still find them all attractive and whatnot but the whole “OMG will I see him anytime soon” feeling is gone. In it’s place is this sense of independence and security that I never knew I had. While I was never the type to date and get a boyfriend just to have one, I always, and I mean ALWAYS, had someone I was pining over. So he always took over my mind and filled me with happiness or sorrow. But now…I am all happiness.

It’s fabulous! The thought of completely letting your emotions be controlled by someone else is just horrific! I don’t want that. I hate when people loose themselves when they date a guy. We all do it to a point, but most of my friends are this way. I guess thinking more into it, most people, when in a relationship, go from a single person mentality to a couple mentality. And no I don’t just mean in the sense that they are dating someone. In other ways too, thoughts, actions, etc. You and that person become one so to speak. For me I don’t know if I want that. That’s not to say I wouldn’t change my mind when Mr. Perfect-for-me walked in the door, but right now, the thought SCARES me.

I know I had so much more to write about and some day I will actually USE my voice notes recorder on my phone so I can get it all down. But for now I will submit to what I CAN remember!!

And on a side note…I registered to take the GRE July 18^th I go. That will give me plenty of time to study and prepare for it! I am so excited!

You know you're obsessed when...

You're laying in bed at 12:30 and you can't sleep so you decide to blog using your blackberry!

Anyway...

I can't sleep as I've stated already. I've been thinking about what Rhi and I chatted about in chat earlier tonight. School, more specifically, grad school and me going. I'm super stoked to apply and enroll. But I admit I'm almost as scared to go as I am excited. It's a big decision. Not one to be taken lightly. It's also a dream of mine. Not one to be taken lightly. As I jokingly said in chat: rock-me-hard place.

I don't want to throw my health away and I need to be honest with myself that I am no longer the same person as I was a few years ago. My energy is next to nothing and I find myself taking days to recover when it used to take hours. That does not make for an easy grad school career.

However, I also know I am stubborn as a boulder and tolerant to things when I least expect to be. In other words, I'll probably survive the first year maybe two with no issues then start to slack off and eventually find myself sick. Really sick.

But do I see it as worth it?

I LOVE my job, I LOVE my co-workers and I really don't want to leave them and it for school. I also don't want to go to the tx surgery table without at least attempting grad school.

Just more for me to ponder. As it rests now I am thinking of trying a semester with one class and full time work, just to see how I do. If it doesn't work I modify. The only problem with it is all me and my need for organization...I NEED a plan! Scratches on paper does not a plan make. I need concrete plans in order to stress less. I need to take some chill pills ay? :)

Well now that I've eased my mind slightly hopefully I can fall asleep and be well rested for clinic and study appointments tomorrow morning.

Sent from my Verizon Wireless BlackBerry

Going back to school

Ok well I was gonna wait a while but then I decided not too.

For some unknown reason I have been really wanting to go back to school to get my master’s degree lately. So much so I have been looking into schools. The hard part is deciding what to get my Master’s in. I have always wanted my MA in American History but then I was thinking what if I did something to advance my current degree, like media design? Then I can be a HUGE asset to my company and almost guarantee me staying there LOL.

I want my master’s. It is one of my goals in life. I have my undergrad and now time for the graduate degree. I also need to decide when to do it. Do I start now taking a class here and there either online or Saturdays or do I wait until I can’t work due to my health then mooch off the gov’t and have them pay for it? The last one is super appealing for obvious reasons (not having to add to my student loan debt), but who knows how long until I hit that mark ya know.

Then I wander about what happens when I can’t work and my student loan debt. We had a convo in chat one night and it seems that any gov’t issued loans will be forgiven when you are out on permanent disability. Of course I would have to check with my lender on this one but hell that is awesome! So then it kind of deters me from wanting to take classes after I can’t work since then I will be doubly screwing the gov’t. Why do I give a dam about the gov’t so much? I dunno but I do.

And of course the schools I am looking into for my MA in History are Temple, University of Penn and Villanova. Temple is the only one moderately priced and the other 2 are expensive. But Penn would be awesome if I could get in there. I would LOVE to go to Yale (always been a dream) but it’s too far away. So the next best Ivy League would be Penn LOL

Maybe I am a total idiot for wanting to do this. Who knows what my health will be like and if I will be able to work once I have the degree. Most likely it will be for a personal benefit of mine and not so much for a professional benefit. Only the media design would be. I did get some info in the mail about that from an online college. But that I am not as into as the MA in History.

Oh well I don’t know. Someday maybe I will be able to take the classes and get my graduate degree. Or maybe the dream will fall to the wayside like that of having babies…only time shall tell.