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.

Letting Go - an article to read

Letting Go

This is a response I wrote on a thread on CF2Chat.  Please read the article and respond.

"The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when he couldn’t, someone who understood that the damage is greatest if all you do is fight to the bitter end."

Is my favorite quote from the article.  And I can not agree more with it.  You may be deemed a hero for standing up and battling till the last breath, but what is it for?  Especially if deep down inside you knew you would be battling till the death.  Wouldn't you want to enjoy those last deaths?

I have 2 examples I am going to draw from.  One is my step-mom who passed away in July and the other is my pop-pop who passed away 4 years ago next month.  They are opposite stories with Cancer as the leading player.

My Step mom was diagnosed with breast cancer 6 years ago.  They treated it for a year and it went into remission.  A year or two later it returned.  Again they treated it and it went into remission.  Two years ago she was again diagnosed with breast cancer but also in her lymph nodes.  She decided to treat it aggressively again and hoped it would go into remission.  It didn't.  It spread to her bone marrow.  She was on hardcore chemo, trying the IVs, testing the chemo pills.  Anything she could to stop it.  She was still working and exhausted.  When she got home from work she fell asleep and slept till morning. She had stopped living.  But she still went on.  Eventually she decided to stop work and concentrate on beating the cancer.  She continued chemo and radiation, whatever would "help", only to have it spread to her brain this past summer.  At that point it was obvious to most of us that she would not beat the cancer.  For it to spread while getting racked with major treatments, meant it was a doozy of a disease.  But still she fought on with the chemo.  The middle of June she was admitted to the hospital after calling 911 because she couldn't stand up to get out of her car and she was alone.  She never left the hospital.  3 weeks later, as she was laying there totally unconscious, my dad made the choice to stop treatments and let her die peacefully.  I still remember the phone call.  He was devastated but could not watch her suffer anymore.  The following day she passed.

Her last year was horrible.  She slept almost 20 hours a day and had no energy.  She was not the same woman he had married.  She had died already, but her body was still alive, being kept that way with the chemo and drugs.  I do not blame her for her choice to fight.  Personally I would not have tried for so long, but then again I have been facing my mortality from age 5.  She wanted to see her grand children grow up and to live longer, she was only 65.  But at some point don't you have to ask yourself quality over quantity?

Then there is my pop-pop.  My mom-mom had died about 1.5 years before he was diagnosed with lung cancer.  Now this was a man who had a stroke at 35, a massive one, recovered and was NEVER sick another day until he got cancer.  We were upset, especially when he told us he was denying treatment, much like my mom-mom had (she lived 5 days after finding out she had brain, lung, liver, kidney, and bone? cancer).  But we respected his choice.  It was his life.  What we were not prepared for was learning how bad the cancer was.  He had told us it was OK, it wasn't bad.  But as he progressed he made my mom and aunt legally allowed to talk to the doctor.  He told them it was stage 5 and he wouldn't not live much longer.  So we went from thinking he had months and months and months to live, to maybe having only one month.  He had kept it from us so we wouldn't try to pressure him to get chemo etc.  We found out in March about the cancer, and in July or August how bad it really was.  The beginning of October he got really sick and my mom and aunt could not take care of him.  They had moved in and taken leave of absences from work to take care of him full time.  We had him put in a nursing home for a few days so they could fight the infection that had taken over.  I remember visiting him on my way to my birthday dinner.  I told him I loved him.  It was the last time I would see him awake.  He came home a few days later and hospice was sent out.  They were wonderful.  He had stopped eating and drinking and we knew it was a matter of days.  October 20th I went to the movies for the release of the movie Flicka with a friend of mine.  I was planning on getting up early the next morning to go see him again.  But an hour after I got home my mom called and told me he had passed away.  I rushed over to see him and say goodbye.

My pop-pop lived 6 months with no treatment.  Though he may not have been in excellent health (duh) and declined rapidly towards the end, he was able to spend time with his new great grandson, his kids and his grandkids.  My nephew remembers him, through pictures, as a fun happy peaceful man.  Not a sick man.  I still remember my pop-pop sitting in the chair in the driveway on mother's day while my nephew ran around him and slapped him high-five every time he got to him.  I've never seen my pop-pop so happy.  I know moments like that went through his head in his last few hours.  The point is he enjoyed his last moments on earth and did not try to fight them.  He knew cancer would kill him and he had accepted it.  And once we knew his decision we accepted it as well.

I think that any disease can be fought, but, like General Lee, you need to know when to surrender.  You need to know when you are tired of trying and want to just live in anyway you can.  Even if it means stopping treatments, especially if it means you stop treatments.

Playing the Learning Game

We all go through this....learning our limits with CF.

Whether or not we ever pay attention to those limits is another story.  Me, I seem to pay attention on occasion.  However, there are nights like tonight when I bypass all reason and pretend I am a normal, healthy 29 year old woman.

What did I do you ask?  Well....I rearranged the kitchen cabinets....all of them.  At 6pm at night, 8 hours after my last treatment.

It all started when the UPS guy delivered my Altera cleaning kit from CFServices Pharmacy.  It includes a NUK baby bottle sterilizer and some Tupperware.  The sterilizer machine is not exactly small so I needed to find room on our already cluttered, too small kitchen counters for it.  This lead to cleaning out the pots and pans cabinet, which lead to the "pantry closet", which lead to the pasta cabinet, which lead to the canned goods cabinet, which lead to the bread and baking cabinet, which lead to the spices cabinet, which lead to the cabinet above the fridge.  We only have one more cabinet, the dishes and glasses one which I left alone.  I spent over an hour doing this, amidst my boyfriend telling me to slow down and shaking his head.  And no, there is no way he could help me because I would get frustrated and annoyed so its better for me to do it alone, which he knows.

While I might be feeling better from the Cipro, I am far from back to baseline.  To prove just how far away, my lungs decided to play fun games back with me.  Each time I coughed, my sight went narrow and I almost blacked out.  What makes it even more fun is standing on a stool when it happens.  Again, it only took me an hour to do all this so I was able to relax afterwards.  But the repercussions will last all night and most likely into tomorrow as well.  My back hurts ridiculously, my lungs are still throbbing and I am coughing up streaky mucus.  I will be a smart CF woman and go to bed early, and sleep late again tomorrow.

Inviting your CF doctor to your wedding....weird?

Is it weird to want to invite my old CF doctor to my wedding?  A topic came up on CF2chat and my answer included inviting Dr H to my wedding when I get married.  But then it made me wonder if that is strange.  And if he would really come.  And if I would have to invite the NP and one really awesome secretary that was there.

I would love to invite him since I had been seeing him since age 5.  He really is like a second father to me.  But I am unsure of the protocol for things like this ya know.

What do you all think?

And BTW, no I am not engaged or anything, like I said, the topic came up and I wanted to expand on it :)

Clinic Appointment - impressive

I am so glad I ended up going to clinic today.  Originally when I made the appointment I was told I could cancel if I felt better by yesterday.  I felt better but not great so I decided to just go anyway and get my prescription for Cipro.  Well, thankfully I did!  I ended up being much sicker than I thought and if this round of Cipro doesn't do the trick it is back in the hospital for IVs for me.

They did a pre and post pft on me.  Pre was crappy (must interject here and remind everyone that the numbers my new clinic uses are different than my old clinic uses.  So while my numbers might look "ok" here, in my old clinic they are 3-4% worse).  I will post what they would be for both so you know what I mean and can see what I base things on.  Since I am used to my old clinic and how the numbers there correlated with how I felt I use those mainly.

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%

Aug 3rd (Penn)

FVC - 2.39L 70%

FEV1 - 1.45L 49% (46%)

FEV1/FVC - 56%

FEF25-75 - .69L 20%

My weight was also down slightly.  In August I was 120lbs and today I was 118lbs.

As you can see this cold has beat my lungs up quite a bit.  To combat this, I picked up my prescription for 750mgs of Cipro, twice a day, and also started the paperwork to get Cayston!  Yay I am super excited!  I have been wanting to try this new antibiotic and we are finally going to try it.  Hopefully I will be able to tolerate it, unlike Colistin and TOBI.  My culture shows I am sensitive to it, so all that is left is to test it out.  She said to make sure I do my albuterol and symbicort before taking the Cayston.  Fine by me.  I need an inhaled antibiotic.  Ever since I had to stop TOBI, and not being able to take Colistin, I have felt very vulnerable to infections.  Only having orals and IVs to fight off lung infections is no fun.  

One final note, I got my flu shot today so now I am protected for the winter.  Let's just hope the strand of the flu that runs rampant is the strand in the shot I got.

I'll be sure to update again after my appointment on October 5th.   

What would you do....

for a Klondike bar....lol

No, that's not really where I was going with that but it popped in my head when I wrote it so I had to go there.

What I was really going for was,what would you do with new lungs?  What prompted this was a post by fellow blogging Cyster Piper.  It got my wheels a turning and I just had to go with it.  She talks about her amazing life with new lungs.  I will quote one piece of it since it sounded like me in a few years when I am transplanted and breathing again like I should be.  "My friends are sick of me already because I guess they didn't realize that new lungs mean bigger lung capacity (i.e., the ability to talk for hours) and more energy to run around like a madwoman. My dog pretty much refuses to walk with me anymore since I rarely have the patience to stop as often as he would like. Everyone complains that I'm too fast for them to keep up with on the street -- and I revel in every second of it."

Me...I don't even know where to start.

I know I would go dancing.  I would ride a horse.  I would spend a day at the park running around.  I would chase after puppies.  I would laugh until I was blue in the face...and not from lack of O2 like now.  I would climb to the top of Bunker Hill.  I would do a walking tour of all my favorite cities.  I would play volleyball.  I would laugh all day long.  I would sing, even though it would be out of key.  I would go camping in the woods with NO electricity.  I would laugh for hours.  I would run.  I would travel.  I would laugh.

Notice a theme?  Laughing!  Yes that's right.  I can't wait to laugh and laugh and laugh and not turn blue and red from coughing afterwards.

What would YOU do with new lungs?