Today...

...I am

Pissed off
Angry
Frustrated
Annoyed

And all at CF.

Right now I am miserable.  I can only blame it on CF because I am uncomfortable.  I am bloated.  I am SOB.  I am hurting.

My gut is filled to the brim.  I have taken Miralax and am slowly waiting for it to work.  Until then I am sporting the 5 month pregnancy look, and feeling dam near close to that as well.

I am SOB because of the bloating.  It is pushing on my diaphragm and making it difficult to get comfortable and breathe.  I've done my second treatment of the day and still no relief.  The albuterol isn't even doing anything for me.  Well a little bit, I can inhale a bit deeper, but overall I feel no difference.  I want to be able to feel the difference.  Like years ago, when I would do a treatment I could tell.  I could get back up and go again.  Now, unless my first treatment makes me feel that way, I am done for the day.  I will truck on of course, because that is my nature, but the day will just result in me grumpy and miserable.  How fun.

As is typical me, on the opposite side of the spectrum I am ready to cry and just lay in bed all day.  I want to be alone.  I want to curl into a ball and escape.  Because that is my escape route.  To hide under the covers and pretend that nothing exists.  I have sleeping pills, I could take them and sleep all day and through the night.  But will I?  No.  I will go about the day in a blur, feeling bloated and annoyed and hope that 11pm comes quickly so I can fall asleep and wake up, hopefully, feeling refreshed.

I have disabled comments on this post because I just wanted to vent.

Female Doctor Appointment

Today I had my first gyno appointment up here in MA.  I LOVE the woman I chose.  She is awesome and the office is great.

Why am I chatting about something so seemingly un-CF related?  Well it has nothing to do with CF but all about my LS (Lynch Syndrome).

I was lucky enough that when I mentioned it she knew what it was.  So she asked about what screenings I have had done.  Just the colonoscopy and endoscopy as of right now, and I am actually a few months late on that and need to get one (but I digress).  She checked me all out, laughed when I gave her my medication list and gave me a clean bill of female health.  Then she came back in and told me she wants me to get an ultrasound done on my ovaries, just to make sure all is well there.  She said she didn't feel anything so not to worry.  So I won't.  But I am sure I still will think about it.

I always forget about what exactly LS affects.  Quite a lot!  But its also nice that there is plenty of screenings out there to help me stay cancer free!

I found it also funny that the depression survey I took at the beginning came back as mildly depressed.  LOL, hence the anti-depressants!

Otherwise all is well.  I will be starting my new birth control with the next period and my CF doctor will be happy!

Dilemma Solved!

It has taken me a while to write but I wanted to make sure I had everything done and lined up before I made an announcement.

I am officially a consultant!

I decided to do it.  I spoke with a friend of mine, who is also a CFer and she gave me some good info.  Apparently with SSDI you have the option to work for 9 months in a 60 month period and earn any amount of money.   How can you go wrong with that?!?!  So I let the guy know at the company and today he sent me all the paperwork to fill out.  And next step is them mailing me a workstation to do the work from home!  I was ecstatic when he told me they can mail it.  Saves me a trip to PA, which has been difficult doing because of the lack of funds.

Once I get my first assignment, I will let my long term disability company know.  I am still waiting to send them the refund for over paying me since June.  I was aware I would have to send all my SSDI money to them when I was approved and I am in the process of that right now.  That is a long story that involves a very annoying old bank account and a great new one and trying to get everything organized.

My crochet business has also been very fruitful.  I have gotten a few orders from friends on facebook and I have been crocheting up a storm.  It's s nice being busy again!  But the busy is at home, at my pace and not a must do busy.  Its stress free.

Hit a Dilemma

What to do, what to do...

Wednesday as I was chatting on the phone with my BFF, I mentioned how I miss working.  I do.  I miss being relied on for help on the professional level.  There is something about actually working that makes me feel good, makes me feel important, makes me feel useful.  

Then Thursday I received an email that could again make me feel useful.  

An old colleague from a previous, though not most recent, job emailed me.  The company I used to work for is looking for outside consultants for some construction drawings.  They are overwhelmed with work, hopefully for the next year, and looking to hire some previous employees to help with the workload.  It is all done at home and they set you up with a computer system so you have access to all the company architectural files to complete the work.  You can complete as many or as little sets as you want and you are paid based on what you do.  So if if takes 4 hours or 30 hours to do the set you get the same amount of money.   

Is it just me or does this sound totally perfect?

But here is the dilemma....

Based on their payment fees, if I were to stop receiving long term disability and only receive SSDI, I could only work on one set a month.  Hardly seems worth it to me.  But if I were to stop LTD and SSDI I could double my current income.  

But is this something I want to do?

I think about the passed 10 months and what all I went through to get approved for SSDI and MassHealth.  It was not easy.  Would I be able to get right back on SSDI if I were to stop right now?  Would I be able to keep my health insurance?  Would I be able to maintain my health, my clean home, and the duties of my "new" stay at home girlfriend job?

What to do, what to do...

The BIG 3-0

Yesterday was my 30th birthday.  Today is my first full day as a 30 year old CFer!

I think as you get older birthdays truly do become just another day.  Peter and I went to dinner and a movie Saturday night and it was great to get out with him.  We rarely ever have time to ourselves.  But yesterday was just another day.  Well another day that included ice cream cake!  Mmmmmm...... No really my birthday was great and I do not feel any older lol.  This was my first birthday away from my family, but my new family made it good for me.

Now to the CF part of the day.  By the end of the day my tonsels were swollen and my throat hurt.  And when I woke up this morning it was the same thing.  Added on is a less mucusy, but rougher cough and some soreness in my lungs.  I'll see how I feel by Friday when I have a full 18 days of Cayston in me, and if I am not any better I'll call the doctor.  Sheesh wasn't I JUST there!

Stenotrophomonas Maltophilia

This is my new friend.  Steno Malt.  Apparently I cultured it when I went in for my cold.  She said that it is sensitive to a lot of medicines, so the Cayston should work on it.  She didn't seem too concerned about it so I am trying not to be as well.

However, it is very hard to keep that mindset when I read up on it.  Steno seems to be classified as gram-negative and found in aquatic environments.  It's similar to B. cepacia in its ability to resist antibiotics.  Again, luckily mine seems to be sensitive to most antibiotics.  Read here to find out more.  Originally it was thought to not have a negative impact on lung function, however, it may not be the case now.  Patients with Steno Malt might actually see a decrease in lung function from it.

So while the articles are not exactly positive, I have hopes that I can get rid of it.

Follow Up Clinic

Today's clinic was much better than 2 weeks ago.  The Cipro and Cayston are doing their thing it seems.  I am still junky and somewhat SOB, but at least I can feel it getting better.  My numbers have all increased, except my weight which is down slightly but no biggie.


These are my numbers from 2 weeks ago:


PRE: (Penn)

FVC - 1.92L 56%
FEV1 - 1.06L 36% (33%)
FEV1/FVC - 55%
FEF25-75 - .43L 12%

POST: (Penn)

FVC - 2.16L 63%

FEV1 - 1.20L 41% (37%)

FEV1/FVC - 56%

FEF25-75 - .51L 15%

And todays:

FVC - 2.23L 65%
FEV1 - 1.31L 44% (41%)
FEV1/FVC - 59%
FEF25-75 - .59L 17%

I still have 3 weeks left of the Cayston so I expect my numbers to go even higher.  Though I am not scheduled to go back until December 7th.

I was also lucky enough to have an exercise study done while there.  I wish I had known about it prior to the appointment since I came in my imitation Ugh(?) boots and a sweater.  However, I "passed" the test and do require O2 with exercise.  We started off slow on the treadmill and I worked my way.  Around 5 minutes she put the O2 on me since I was down to 90%.  She started me off on 1L and worked up based on how my numbers and breathing was.  I ended around 3L and she said that should be good for me but if I am feeling really SOB I can always check and increase it.  I like having it documented now though so that if my insurance were to ever put up a fight they can see proof I need O2.  Now I just need to get that sleep study they keep telling me about...

That is pretty much it for the CF front right now.