Sunday, March 28, 2010

Eva got her wings


Eva passed away yesterday morning.  Breathe Easy Cyster...

Friday, March 26, 2010

Just a small update

As you can see I have a new layout.  I am tres happy with it!!!  The colors are nice and springy and the 3 column layout is perfecto!

I am heading back down to my hometown tonight so that my family and friends can meet Peter.  I am so excited and a wee bit nervous.  I know they will love him!  He is amazing!  I just hope he doesn't think they are all a bunch of nut-cases and run for the door.  OK, I know he will think they are nut-cases because, well, they are haha!  Hell I am friends with them so they must be :)  Just so long as he still loves me afterwards...which I can't imagine him not.

In other news I have started the SSDI process.  I contacted Beth Sufian's office in Texas and found out what all I need.  I am having my records sent to me from Penn and they should be here next week.  Once I make a copy of them, for my records, I will send them down to their office and let the headaches begin.  Luckily having the law office behind me I should have an easier time of getting approved.  However, right now so many people are applying because of the economic crisis that it is still taking a long time.  I meet all 3 criteria so really there shouldn't be any issues whatsoever.  And my doctor is all on board with me applying.  I will use Dr. H as my primary and then Dr. D at Children's for any follow up.  It makes much more sense to have Dr. H helping me since he has been seeing me since October 9, 1986.

Yep I was 5, and ironically it was the day before my 6th birthday.  I was in first grade when I began seeing him.  I assume I was also in first grade when we found out I had CF.  I know I was 5 and I believe it was only a few weeks before my appointment with him when we got the results of my sweat test.

I am off to pack for my wonderful excitement packed weekend.  Hopefully I can sleep all day Monday to recover since I know sleeping will be hard this weekend!!!  So much planned and look for pictures and an update next week!

Much love!

Wednesday, March 17, 2010

Last appointment at Penn

As the title says, today was pretty much my last appointment with Dr H. I'll be back to visit from time to time but my care is now in the hands of Dr D at Children's in Boston.

It was a great appointment in my opinion. He did tell me to get on SSDI ASAP because of the waiting period. So that will be my first order of business when I return home. Of course today I showed just how healthy I can be. I blew a 45%!!!! Holy cow I haven't seen that since I got out of the hospital in October, and maybe even before that. And I feel pretty good too. My broncho spasms start again at night but they aren't as bad when I'm good and do 3 treatments a day. So if I start doing that daily who knows just how good I can get my numbers to.

I love feeling like this but it makes me nervous that I'll have trouble getting on SSDI. I'm hoping they won't deny me because of feeling healthy. Its that fine line of wanting to feel great but not too great because then I won't get approved. But not wanting to feel crappy and definitely get approved because then I feel crappy and can't do anything. I'm going to work up an email to Beth Suffian when I get back to my mom's later too. I have more questions for her about everything.

I hate to admit this but I almost feel guilty for feeling so good. I have so many friends that feel shitty and are being listed that it makes me feel bad. And I know that's stupid of me! I should celebrate feeling great! If staying out of the hospital and being able to enjoy life is a result of not working and exercising then I should take advantage of it right? Not feel guilty. Alas, such is my mind.

Well I leave you all as I am off to my office to finalize my not returning and meet some co-workers for a yummy lunch. I miss my boyfriend and can't wait till tomorrow to see him again! But I shall enjoy St Patty's Day like the good little Irish lady I am :)
Sent from my Verizon Wireless BlackBerry

Monday, March 15, 2010

Poll results

Thank you to all that participated in my poll.

It seems that the majority of my readers would prefer me to write short stories.  :)

Now to figure out WHAT to write ABOUT haha!!!!!

Off to the drawing board...errrr...typewriter...maybe!

Friday, March 12, 2010

Exercise Train

Once again I have started exercising.  Though I must admit I am NO where near where I was before I got sick in July and slacked off.  I am doing Pilates every other day (MWF) and I was going to do the exercise ball TTh. However, yesterday I attempted the ball and stopped after 5 minutes because all that rolling and bouncing made me nauseous.  Me and my weak stomach do not enjoy anything that involves motion.  I am wicked prone to motion sickness, so much so that I can't even look down when in a car if I am not driving, nor sit in any other seat except the front.

But I digress...

So Wednesday I started my Pilates and was able to make it through a good portion of it.  Anything that allowed you to lay down and not stretch so much your eyes want to pop out, I was able to do.  I will have to work my way up to the whole 25 minutes.  What made me simultaneously smile and want to strangle the video instructor was she kept saying "make sure you are breathing,  Muscles need oxygen to work" and "fill those lungs all the way".  Yeah OK lady.

Next time I will wear my oxygen...which coincidently is today!

Once spring time is here and the warmer weather starts I can walk outside for as long as I want to.  And there is a lake right down the street from our house so Peter said he, Emily and I can wander that on the weekends.  It's 3 miles and HUGE, but with O2, stamina and breaks I will conquer.  I need to loose an inch or two from my waist so I am more comfortable this summer in a bikini.  I know I know, how often do you hear about a CFer wanting to loose inches.  But this CF bloated belly needs to disappear!  I'm more concerned that when I feel bloated and uncomfortable I have a much harder time breathing.

I am thinking that this is part of why I have been SOB lately.  By about 1pm I am bloated and my SOB starts and my back begins to hurt.  And no, adding in extra treatments does not help me.  I'm hoping that next week when I see Dr H he will have an idea about the back pain.  It has just started in the past 2 months on a more consistent basis.  Before it was once or twice a week and nothing I thought to mention.  But now, daily, it's time.  So maybe once we figure out the pain, we can figure out the SOB and get me back to feeling good!

And as a side note, thank you for voting on my poll to the right.  I really want to get something written but I am not sure what to write nor where to start.  So I thought maybe you wonderful bloggy readers could help a Cysta out (loving the double meaning).  So thanks again for participating!

Tuesday, March 9, 2010

Day of Firsts! - edited with Pictures!!

Well today was the BIG day for me!  My first ever clinic appointment at my new CF clinic.  I decided to go with Children's Hospital since I would like to have my transplant at Brigham and Women's.  Now my current doctor, Dr. H, down in Philly suggested Mass General, but I was not comfortable with going to one hospital for clinic and then switching for transplant.  I like having them all together.

Today was doubly great because I also got to meet a fellow blogging Cyster!  She is currently in B&W so after my appointment I trekked across the bridge connecting the hospitals and made my first ever visit to a CF patient while in house!  Beth is adorable and so what I expected!  She has a fabulous personality that comes through on her Cystic Gal blog.  She was even cuter in person!  So tiny (we even chatted about the size of us being "normal" and not overly small) and she looks great.  If it wasn't for the O2 you wouldn't even know she needs a transplant!!!!  We chatted for a bit and then we got some pics.  She took them on her phone so once she uploads them I will add them to my post.  I am so glad I finally got to meet her and look forward to meeting her again once she is out!  And everyone say some prayers she gets her new lungs soon too!  She has been waiting a little over 4 months for the call!!!

Now for the clinic appointment update...

It was WAY different than what I am used to at Penn Presby but in a good kind of way.  There is no waiting room; they put you right into an exam room and everyone comes to see you.  I had PFT's, weight, height, BP etc all done in my room.  And everyone gowns and gloves up when they come in.  The check in staff were super nice too.  I love nice people they make the visit so much more enjoyable ya know?!

My weight is up to 120 lbs!  Sheesh I need a diet, or to start eating healthier and exercising.  My lungs are the same as always at 1.24L or 42%.  But my small airways improved slightly!  Up to 18% from 14%!  Awesome yes!!!  And my FVC is at 63% which is down from 65%.  Overall it was a great visit from that standpoint.

The part I wasn't so happy about was the doctor I saw  She was nice enough but she was kind of cold.  She harped on me for not being on birth control of any kind, even after I told her the 4 different types I have tried with the same outcome in the end.  She said that is a big concern of hers with me.  I guess I look like I am gonna get preggers soon?  Beats me.  But I am an adult, who MADE the choice to not be on anything as of right now.  If I were to get pregnant fine, but the chances are pretty slim - yes I KNOW I can please don't preach about this thanks :).  So she told me I need to see a gyno asap to figure out what to do.  We will see.

She also questioned a lot of the things my current doctor does and it made me feel very defensive.  It was in the manner she spoke to me about the things - like what he had done was ridiculous!  I take Zithromax everyday, just a smaller dose, which is not the norm.  Most people take it M-W-F.  She was quite thrown off by this and said she will probably change it now that I am more compliant about taking my meds (the reason for the daily is I would never remember to take it only 3 days a week).  And there were other things, but I am not going to get into it all.  Now I am giving her the benefit of the doubt since it was my first visit, and I have never seen another doctor besides Dr. H.  So a lot of what I think I was experiencing could be all me!

She was very thorough with the questions and answered all of the ones I had prepared before I even had a chance to ask them!  That was a plus.

So my game plan is to find a local PCP and GYNO before my next appointment (April 27th).  And to see what Dr H has o say next Wednesday!

Beth and I!!

Monday, March 1, 2010

Home O2...again

Anyone else noticing the lack of happy blog posts on here lately?  I know and I am very sorry.  I promise that sometime soon I will write a super happy blog!  Don't know when, but soon :)

So now for the O2 post.

I got my home O2 set up delivered today.  I emailed the new coordinator at Children's hospital to see if I could get a home concentrator set up before my appointment on March 9th.  I have almost 500 hours on my portable EverGo that I got right before Christmas.  While I love it, I don't want to wear it out when I will eventually need it all the time for going out etc.  She emailed me back this afternoon to let me know Apria was going to call me about delivering it today.  I was thrilled!!!!!  Talk about fast service!  The woman at Apria called me and within 90 minutes the guy was knocking on my door.  She had gotten everything approved through my insurance and there is no deductible or copay for me (which I was not expecting one because I have the same insurance as I was using in PA).

The delivery guys rolls up and knocks on my door with a concentrator, HUGE O2 tank and 3 small tanks.  And tells me that the respiratory technician will be calling this week to set up delivery of MORE smaller portable tanks.  Even though I told him that I don't need any of the tanks for back up because I have one that runs on batteries.  Luckily Peter is going to put the large tank in the basement so I don't have to look at it.  Yeah I flat out told him I don't want to see it at all.

After signing the paperwork and filling out forms, the guy finally left.  I shut the door then sat down at the kitchen table and cried.  I cried because I felt sick.  Seeing that large tank in the bedroom depressed me and made me see myself as sick.  Needing O2, using O2 and having the concentrator is one thing.  Even the small backup one I had wasn't bad.  But having that monster stare at me just made me sad.  I put a box over the top so I can't see it, but it is still there.

It just reminds me that so much has changed.  The guy asked me how long I had been using O2 and I said a year and half.  Can you believe it has been that long since I started it?  That scares me to that I have also upped my liters at night (I now use 3L and 4 with exercise) and with exercise.  It's the progression.  I just hope that I have a good clinic appointment so I can spiral out of this mood and start to feel better about myself.

And yes, adding a second, or better anti-depressant is on my to-do task list for clinic.