In Training for my Life

It's been a while, I know.  Sorry.  It has been a hectic few months.

My pancreatic surgery is scheduled for July 28th.  So that means July 7th I will go inpatient to start IV antibiotics to get my lungs in tip top shape.  The surgeon told me I will be in 7-10 days after surgery, possibly longer, depending on how I heal.  It could be 7 days or it could be 40.  No one knows.  But the first few days out of surgery I won't even be awake or aware, which I like...means I won't feel pain yet lol.

As far as specifics go: they will remove my gall bladder, bile duct, part of my intestinal tract, and the head of my pancreas.  More of the pancreas if the pathologist in the room determines I need more removed.  He said I will most likely need insulin when I am done, and I will definitely need pancreatic enzymes (got that covered already!!!).   My whole mid section will be entirely rearranged.  They will be quite surprised when they go in there to begin with and see I am all moved around already.  HA!  Have fun docs! (they know about my hysterectomy no worries).  I'm not too thrilled about the scar that will be across my stomach from this, but I am hoping it won't be too large.  Not like I wear skimpy bikinis anyway, but I am still not looking forward to that.

I'm extremely nervous and hoping that my immune system allows me to heal quickly and that I don't get any infections.  I am worried about that part more than the surgery and coming off the vent.  I have faith my lungs will pull me through it.  One thing I am going to try, which I remember from my hysterectomy, is to put on as much weight as I can before surgery so that the CO2 they pump me full of during surgery can be reabsorbed into all my fat.  I remember the awful pain I had in my upper right shoulder from it last time.  Maybe the more fat I have, the less it will hurt.  *fingers crossed*

In other news:

May 15th I GRADUATED!!!  Finally, 16 years after graduating from high school I finally have my Master of Arts degree!!!  So exciting.  It feels fabulous to be done and I have already started a to-do list for myself of things I want and need to do to fill my now empty time slots.  I'm afraid to get too lazy because then I will do nothing but sleep, and I need to keep busy to keep healthy.

Speaking of which, I have been going to the gym once a week to do strength training on my own.  Tried for twice a week but I was so busy that it wasn't working out.  Now that things have calmed down for the next month or so I am shooting for twice a week. As my transplant nurse said, I am in training for surgery.  Pretend that this surgery is something I need to train for and prepare.  So that is my goal.  Minus the whole CF thing, I am in fairly good shape.  I can't run, but its hard with 37% lung function lol.  But I can exercise like a champ and lift weights, and I have stamina for cleaning etc.  Now if these stupid lungs would work I would be set!!!

Vorrei fare un viaggio a Italia

Just a quick update on me since I don't have any more CF related questions to answer.  May is about over as well and I hope we were able to spread awareness to the world.

My energy level and health have been going south for the past couple of weeks.  Well really since the flu.  But the past week or so its been very noticeable.  I am up to 4 treatments a day (vs 3 normally) and I would do 5 if there was enough time in the day.  Today at the gym I had to lower my walking speed because my O2 did not want to go above 90%.  Craptastic.  I have clinic next Wednesday so it will probably be IV time.  

I started classes again last week.  Loving it so far.  Its on the Renaissance!!!  Takes me back to my trip to Florence and Rome and really makes me want to go back!  Someday...It is also making me want to learn Italian.  Again, someday...

In sad news, a friend of mine passed away yesterday from CF complications.  She had been in the hospital for weeks and I was following the updates though I was never fully sure of what was going on.  But I saw the news this morning that she is gone and breathing easy now.  Sad....Please say prayers, send good vibes etc to her family, her husband, her daughter that they may find peace at this time.

Sorry for the Slacking

I just realized that its been almost 2 weeks since I posted!!!  I am slacking and I apologize for that.  Life has been hectic around here.

Last Monday, as most of you know, the Boston Marathon was bombed, killing 3 and wounding over 200 people.  Friday one suspect was killed and the other was taken into custody at a Boston hospital where he remains.  Living in the suburbs of Boston this was a scary event.  When they shut Watertown down (I have a friend that lives there) I was nervous for her and nervous that the guy got out.  Friday was filled with ups and downs as the country watched the events unfold.  We were thrilled when the guy was captured.  Now we can rest easier in this great city.

Besides the tragic events that unfolded last week, I have been swamped with school work.  I have two papers due May 2nd, one of which is written, just needs to be proofread.  The other I have started to write, but I also have another paper due this Thursday I am concentrating on.  Plus my assistanship work needs to be finished by May 1st.  I don't think I went to bed before 2am all last week.  And up again early to get going on the work.  I have not slacked on exercising which is usually the first thing I cut out.  I have forced myself to go every day no matter what.  I read on the treadmill so the readings for class at least get done.

I have also been stressing a bit too.  Next Thursday, the day both final papers are due, I am also presenting at my school's Graduate Research Day seminar.  I have to get up in front of students and teachers and read my paper from last semester, then answer questions people may have.  I am SCARED SHITLESS.  Luckily I have an Ativan left over from my MRI a few weeks ago.  I plan on taking that bad boy shortly before I get up there.  My professor said to plan for 20 minutes in front of them.  Fabulous....Family and friends are welcome so P is going to see about coming with E.  I am honored and I refuse to turn away such a great opportunity.  This will look amazing on my academic resume as well as just my work one.  My paper is on Queen Elizabeth I and her involvement with the Puritans during her reign.  Who knew that working my ass off last semester while trying to plan a wedding, get married, have an extended honeymoon, and lose 2 friends would make me write a dam good paper.  I knew it was good, I loved it when I wrote it and re-read it.  But I had no idea it was THAT good lol.  I should really take more credit for the hard work I put in to school huh?

I have transplant clinic on Thursday.  We shall see how that goes...

Curve Balls

Sometimes life throws us on a course that we aren't expecting but that we need.

For 2 weeks I was up early to take E to camp (read 7am) and then off to the gym to exercise.  No time to nap though as she needed to be picked up at 12:30.  I did have a couple of days where I did get a break but they were towards the beginning which really does nothing for me.

Last week E and I were in PA visiting my family.  Again I was not getting much sleep with 3 kids who are early risers.  I napped one day out of the 8 there.  Plus we were in the sun most of the day or I was out partying it up (bridal shower and bachelorette party - pictures will be posted at some point).  So I am totally and completely worn out.

Then there is today, followed by the rest of the week.  Up at 6:30 to be in class by 8:30.  Today we were in the classroom for 8 hours.  The next 3 days we will be walking around archives in Boston and Salem.  O.M.G.  The walking is going to kill me.  I digress though.  By 2pm I was shivering and feeling completely achy.  I could tell I had a fever.  When I got home I took my temp....It is running between 99.3 and 100.1.  Nothing horrible but ugh!!!  One day.  I lasted one day before I got "sick".  I say "sick" because I know it is lack of sleep.

Besides completely running myself ragged the past 3 weeks I finally got my O2 study results back.  Drum-roll please.....I need O2 with sleep, even when "healthy".  And of course I haven't been wearing it so I keep forgetting to put it on when I go to bed.  Tonight I won't.  Tonight I plan on going to bed, oh, well, in about an hour and sleeping all night, with my O2.

What does this all mean?  Well it means it is a good thing I did not interview and get a new job.  I lasted 3 weeks on less sleep than usual.  3 weeks before I began running fevers.  3 weeks before I know I am too exhausted to do anything.

Thank you lungs for being shitty and making a wonderful few weeks so awful.

Everything Happens for a Reason?

Perhaps!

Tonight in class I found out that I was awarded a research fellowship!  It is with my current professor for the fall and spring terms of this upcoming school year.  I can't tell you how absolutely STOKED I am about this! My professor told me about it in class tonight.  I have not gotten any official correspondence yet, but the names are sent to the professor for approval so he showed me the email and it is ME!  If I had decided to apply for that job AND gotten it then I would be screwed.  So everything works out in the end.

Here is the description:

Graduate Research Assistantships are designed to link a graduate student with a faculty member on a meaningful research project.  During the assistantship period, the graduate research assistant will work directly with a faculty member on a project, which may lead to a presentation at a conference, a joint publication, or other significant professional activity.  The assistantships are awarded to students who are fully admitted into a master’s degree program.  They are intended to encourage and assist superior students in pursuing their course of graduate study; to provide students with professional development opportunities, and to provide support for faculty research, scholarship, and creative activities.  The assistantships are competitive and are based on the requirements listed below.  The assistantship includes 10 hours of work per week at $12 an hour in the fall and spring semesters when classes are in session.  Assistants receive full tuition remission for fall and spring semesters when classes are in session, except for consortia, directed studies and theses courses.  The student is responsible for all associated course fees.

Big Decision to Make

Today I decided to check out the design job scene online.  And I found a job I think I would love.  And they are hiring.  And I could finish my NCIDQ paperwork and actually get licensed!  (now to actually FIND the paperwork I started when I still lived in PA)

But what should I do? 

You all have seen me complain and whine about how much I miss working on here numerous times.  I would LOVE to go back to work!  I know I couldn't do it for years but maybe 12-24 months?  Just enough to get some money saved up to keep us from drowning when I get transplanted.  

I spoke with a friend who went from SSDI to working while on Medicare and I wouldn't lose my Medicare, just my SSDI which I could obviously live without if I was working again.  And I would be able to get back on it fairly easy since I wouldn't be taking more than 36 months off from payments.

But what do I do about life?  And school?  And volunteering?  And Major (our dog)?  And my health?

I remember that when I worked I had no life.  I couldn't see friends on weekends because I was so tired from working all week.  But I don't have many friends up here anyway and we stay home a lot on the weekends as it is. 

School I could put on hold if I wanted to.  Or just take one class at a time. I think I could handle it.  I have 6 years to complete the masters program and I know I won't be working for 5 years so I could complete it after stopping work again.  Am I OK with that?  I think so.

Volunteering would obviously have to come to an end.  I could deal with that.  I could always start up again when I stopped working again.

Major we could put in doggy day camp.  It wouldn't be too bad and he loves it there anyway.

Health....hmmmmm....that is a tough one.  I would still need to get IVs every few months just like now, but it would be more difficult to do when I am working 40+ hours a week.  I was getting sick all the time when I worked and was down to 4 days a week.  I doubt a new company is going to hire me for only 4 days a week.  Even if I did put the full 40 hours in.  

There is just so much to think about.  Should I send in my resume and just see if I even get a call back?  But if I do get a phone call, do I tell them I am unsure of what I want to do?  So so so so so much to think about!  

Home Again

I got home around 8:30 last night.  The hospital stay was pretty uneventful.

I had the PICC placed on Tuesday, and Wednesday they had to pull it out 4cm.  Apparently the home health company has a requirement and though the PICC team was OK with the placement, the home health would not see me unless it was pulled out a bit.  I was honestly expecting way more than what it was with the pull out.  I never had them do it before.  She basically did a dressing change and just pulled it out some.  How ironic that THAT is my biggest fear with dressing changes.  Them pulling it out haha!  At least I know I won't die or have a heart attack from it now.  The thing I don't like is now it sits out really far from the insertion site.  That makes me nervous with cleaning it and all.  I might have to ask if they can tape it, just for my own sanity, when they change the stat-lock.

Health wise I feel the same.  My cough is less but as far as the lungs go....still hurt....still SOB....still tight.  IVs don't combat that though.  Last night I had a coughing fit and I turned the same color as my bright red tank top.  P said "hmmm you sound great babe, sure you were in the hospital?"  Pretty much sums it up.  It's only been 5 days of IVs though so I am expecting me to feel much better by the end of the 3 weeks.  Also, they have me on a different IV this time.  Usually I am on Tobra and Ceftaz.  This time it is Tobra and Zoysn.  I haven't had any real side effects from the Zoysn except alternating liquid poo with no poo!

Also while I was in I had an overnight O2 study done.  Wait what?  Didn't I just have one like 2 weeks ago?  Yes that is right. I DID have one done.  But guess who has NO record whatsoever of having it done?  Apria.  Yeah bastards.  Not too big of a deal getting it redone but still.  How can you have NO RECORD of it AT ALL?  Anyway, I de-satted below 88% a bunch of times so I had O2 delivered last night.  Its a smaller concentrator than I had last time and now I have funky green tubing!  No tripping over it in the middle of the night now!  I am back to using 1L with sleep and still none with exercise unless I decide to start the couch to 5k plan again.  Running, jogging, and inclines make my O2 plummet.

Sometime overnight while having the sleep study done, I must have slept wrong and pulled a muscle in my back.  The lower back, right around where the back indents just slightly about the butt, it hurts.  And I mean HURTS.  I didn't even have this much pain with my hysterectomy!  I could hardly move Thursday and Friday.  Tylenol does diddly for me.  I took 4 Motrin when I got home last night and I felt much better.  But I woke up around 7am (to do my IV) and again could barely move.  So I think I might be taking Motrin 3-4 times a day to keep this pain away until it works out on its own.  And hopefully that is soon!

That is my update for now.  I have a clinic appointment this upcoming Wednesday to see if the IVs have started to work at all.  AND I am done school for the semester!  Classes start again the 21st, but I have 2 weeks of blissfully nothing to do!  YAY!

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! :)

Starting School!

I am so excited!!!!  I started the grad school process (I think I blogged about it but I could be wrong) right before the new year, but found out shortly after I needed a few more history undergrad classes.  So I signed up today for my first history class at NSCC!  I will be taking History of World Civilizations 1.  Classes start this Monday.

It feels great to be on my way to my goal....an MA in History.

Do you still love me?

I know I know!

I am a horrible blogger!!!

With the holidays approaching I have been super busy shopping, crocheting and preparing for my first family Christmas dinner at our house.

Nothing to report which can be a good thing.  I have started the admissions process for grad school!  I hope to start this upcoming summer.  If I can find my GRE scores all will be OK with the world.

Well I hope everyone has a very Merry Christmas and a Happy New Year.  And to those who don't celebrate, I hope you have a happy Holidays :)

Peace on earth...good will towards men...and be an organ donor!

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.

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

I did it

I did it!!!!!!

I sent for information about the Graduate program at West Chester University. I chose this school because they have this awesome assistantship where if you work full time (20 hours) they will pay your tuition and give you a $5000 stipend for the semester. Or part time (10 hours) and they will pay half and give you $2500! So yeah made it easy :) Plus its a state school and it's cheap to begin with. And to be honest, I LOVE their courses! They have the most classes that I am interested in!

I thought A LOT about it today and I wanna do this. Part of the reason I decided to go ahead was I looked more into the NCIDQ exam which I was planning on taking in October and it will cost me $1200-$1500 to take it! HELL NO! It will get me no where with my job and I can take it any time I please. I have all the info I need. So maybe in a few years.

Instead I am going to look into taking Grad school classes...I am BUTS haha! But whatever! Hell if I get the full time assistantship then I can work part time like 20 hours at my job and just COBRA my benefits and I will be fine.

Of course this will all depend on how I do on my GRE and if I get accepted to the MA program...wish me luck!

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.