Monday, July 26, 2010

A Few Things

This is a post where I write about a few things.  Goals, recent developments, etc.

First, I have been doing the 365project since around Memorial Day - all the photos are on my phone, but when I updated the software, I lost all the 365 data- like what days the photos went with and what I said about them.  That's frustrating.  So I'm starting again - and trying to reconstruct the last couple months.  This time I am backing it up on 365project.org.  Hopefully this will be good.  Once I get it all set up, I will post  the link to where you can see the lame photos I take with my iPhone :-)

I'm hoping to post some photos from my digital camera too, since it takes much better photos. 

Next, I have some goals:

Clean the house
Finish my quilt
Finish the two scrapbooks

That's about it for now, but that is what I want to do during August - and August is shaping up to be a VERY busy month!!!  I'll have to schedule days where I sleep all day, so I don't know when I'm going to schedule in all the cleaning I need to do!!! 

That's about it for this post.

~Carla

Tuesday, July 13, 2010

THE Post.

This is it.  The post I've been wanting to put up since November.  This is The Mannitol Post.  It's a long story. 

Last summer I decided I would participate in two different clinical trials - one for inhaled powdered Cipro, and the other for inhaled powdered Mannitol.  I did the Cipro study first.  It was a month long and I had to show up for PFTs and check-ups every week, but it was only a month.  No. Big. Deal.  The next study was going to be more challenging and taxing.  Remember, I had agreed to babysit more regularly starting in August, and I was loving the babysitting.  I even did some babysitting where I had to take my afternoon IV dose with me.  That was a rough week.  Actually a rough two weeks.  I did IVs for the first time all by myself - with no help from anyone.  I did the IVs at the end of the Cipro study, so I had to wait to start the Mannitol study. 

The Mannitol Study.  Let me start off by explaining what Mannitol is.  It is FDA approved for other uses.  They use it IV to reduce brain swelling.  Most chewing gum is coated in powdered Mannitol.  It is not illegal to own Mannitol (I found food-grade Mannitol on the internet and they sell it by the pound).  This study is to approve a different use for Mannitol.  In this study, powdered Mannitol is inhaled into the lungs via capsules put into an inhaler.  The study was a year-long commitment.  In the first 6 months you would either have the drug or a placebo.  The second 6 months is what they call "open label," meaning everyone has the drug. 

I didn't think this would be a huge commitment.  Inhale 10 capsules twice a day for a year.  All for the sake of science and my health.  Note the second part of that sentence.  I participate in studies for the selfish reason of benefiting my own health in addition to doing it for science and to help other patients. 

When I got into the study, I realized it was going to be a MUCH bigger commitment than I originally thought.  Mainly because of the JOURNAL.  This was going to be the JOURNAL FROM HELL.  In all honesty, I was going to be lazy about it.  They wanted you to record ALL symptoms - colds, sinus stuff, sprained ankles, etc.  I really wanted to say, "Stubbing my toe at least once a week is in NO WAY related to your study."  But I agreed.  Then I was told to record all doctors visits, all nurse visits (remember I have a daily nurse who does manual chest PT for me), and every time you pick up medication at the pharmacy.  I thought this was ridiculous.  I try to limit my pharmacy trips to once a week - but it's sometimes more.  I honestly thought I was going to spend most of my free time filling out that journal and I would never again blog or write in my personal journal.  I wasn't enthusiastic about the JOURNAL FROM HELL, but I agreed.

For the study, they have you do a tolerance test to see if you can handle the drug.  It involved lots of PFTs and taking the medication.  One half hour after I took the medication my PFTs (lung function tests) had improved more than 10%.  TEN PERCENT.  I hadn't seen numbers that high in years.  It was unbelievable.  So I agreed to do the first 6 months not knowing whether or not I had the drug just so I could get to the second 6 months to have the drug!

A week after the tolerance test I was double-blinded and given my stuff.  Again, PFTs were done with your substance, and then for the 30 minutes after the test I had to collect all the sputum I coughed up.  Both times I did PFTs - with the tolerance test and the first dose of 'Mannitol' - I coughed really hard.  I also coughed up tons of gunk.  The second time I collected all this gunk and it filled a sputum cup half full.  Completely gross.  I wish I had taken photos so I could show you the complete gross-ness of this sputum cup.  I knew I had the drug because of the way I coughed and because my lung functions again went up more than 10% in 30 minutes.  I knew I was holding onto a miracle drug.  I just didn't know how much trouble it would cause me.

I did exactly three doses of Mannitol as I was supposed to - 10 capsules twice a day.  I woke at 6am on Saturday with a cough I couldn't get rid of.  This was the hardest I had ever coughed (saying a lot for a CFer... I pretty much cough for a living!).  My lungs ached and the muscles in my chest and abs were quivering from working so hard.  I tried everything to sooth the cough because I wanted so badly to continue with the study.  Cough drops.  Eating. Drinking water.  Sitting in a steamed bathroom.  Doing all at the same time.  And nothing worked.  After six hours I finally gave in and took cough syrup with codeine in it, which finally soothed my cough.  But I knew I couldn't take the Mannitol the way I had been instructed to.

I couldn't believe the cough.  It's hard for me to put into words how horrible and how strong the coughing was.  My upstairs neighbor came down several times and knocked on my door... and I was coughing too hard to answer.  Finally I checked the door and there was a small blue Post-It that read, "Please turn down your sub woofers. It's shaking our walls."  I had nothing playing because I was trying to calm my cough.  My cough was shaking the walls in a concrete building.  Lovely. 

Since I couldn't tolerate the drug the way I was supposed to take it I had to drop out of the study - which means you need to return the un-used drug.  But I read through the papers I had signed, and no where did it say I was required to return the medication.  I bet they've revised study documents now, but nothing I signed said I had to give it back - so I didn't.  Actually, I waited a month or two to even tell them I was dropping out of the study.  Because I needed this drug.  I needed to make it work for me.  I couldn't give up the lung function percentage that it was giving me.  My lungs will never be completely at full capacity because I have scarring, but I want them to be the best they can be. 

Before I told them I was dropping out of the study I played around with dosing.  First, fewer capsules twice a day.  That was too much - the horrible cough continued.  Then once a day, every other day, once a week, and finally I settled on 6-8 capsules once every two weeks.  That's a big difference from 10 capsules twice a day.  But my lung functions maintained.  And even more importantly - I FELT AWESOME.

I told my study coordinator I was dropping out of the study and I refused to return the medication.  She was furious with me.  We had several long circular conversations where she tried to convince me I needed to return the medication, and I tried to convince her I needed to keep it.  I told her I'm fighting for my health - for my life.  It was time for another hospitalization, and I wasn't even close to needing IVs yet.  At one point she said, "I understand..." and I interrupted with, "No. You. Don't.  When was the last time you had to spend two weeks in the hospital for IV antibiotics that damage your kidneys, liver, and cause hearing loss?  I am fighting for my life - the right to have a more normal life, and if this medication keeps me out of the hospital for even 6 months at a time, I am going to keep doing what I'm doing.  Because 6 months without IVs is better than having to do them every 3 months." 

After that, she stopped calling.  They sent a certified letter, which I refused.  I knew that was all the action they could take against me. 

I knew I was on my own.  I felt black-listed.  I knew my research coordinator was talking about me to other research coordinators (I have a friend who works in the department and overheard these conversations).  At one point she said, "Well, you know, her father is a psychiatrist and she's on a lot of psych meds."  THAT pissed me off.  I understand that I complicated her job and that I was a pain in the ass - but to call me crazy, and to bring my father into it is INSANE.  The fact that my father is a psychiatrist has NOTHING to do with the fact that I have PTSD, Depression and Anxiety.  See my little blogging profile - those aren't related to my CF.  Anyways, that pretty much ended any desire I had to explain myself to her - or to have anything to do with that CF clinic.  I just assume that the doctor who was in charge of the study (who is/was my CF doc in my town), isn't my biggest fan.

So now the months are flying by - I reach 6 months without IVs... 7, 8, 9... and I finally decide I need to see a CF doc and finally see if my lungs are maintaining number-wise.  I was healthy - I AM healthy, but I wanted the numbers to prove it.  So I make an appointment at a clinic 2 hours away, and yes, my numbers are maintaining.

The same week I went to the far away clinic, I went to a CF Adult Group meeting.   There a couple people criticized me.  I was told I could go to jail, I might as well have a ton of pot in my house, that I'm selfish to 'ruin' the study.  And at first I cried.  I even wrote about it here - why I'm scared to write about the Mannitol.  And now none of that matters to me.  The opinion of those CFers can't matter to me - because I am taking care of myself the best I know how.   

I am living my life, I'm loving my life, and I don't care what I had to do to get here.  I had to do what I had to do.  I found something that works for me, and I'll be damned if I'm going to give it up because the FDA says I should. 

It's 11 months since I started my last round of IVs.  And now I feel it's safe to plan my One Year Sans IVs party.  I'm celebrating my life, the people I love, and the amazing drug that helped me beyond my imagination. 

Here's to Mannitol - my wonder drug. 

Monday, July 12, 2010

Closet and Bedroom Photos

This is my clean closet and bedroom!!!




















-- Carla's on the go! Posted from her iPhone.

Sunday, July 11, 2010

Clean Closet

My closet is CLEAN.  C. L. E. A. N.  Can you believe it?  ALL of my clothes (minus the ones that need washing...) have a home.  That's right, there are NO clothes on the floor.  They are all either in a drawer or hanging in my new beautiful closet. 

Okay, yes, the dining room is slightly more cluttered now, but not bad.  I have a bin of shoes and a huge bag of clothes to donate.  I have piles of clothes for my bonus siblings Kyra and Sarah. 

And I was so excited to call my parents and tell them about my new closet and how my clothes finally have a home and I can keep it this way... and my mother says, "Well, we'll see."  Because she has absolutely no faith in me whatsoever.  None. 

Honestly, I'm not making this up - if there's something that needs doing, my mother doesn't believe I can do it - BECAUSE I'M NEVER GOOD ENOUGH for her. 

So to give her the giant finger, I'm doing a million loads of laundry so everything that can be washed will be clean, and then PUT AWAY.  And I babysit this week, so I'm already doing more than my mom does in a week. 

She can bite me.  And accomplishing all this will make me happy.

A big THANK YOU to my bonus brother Chasie - you are the best.  And even though you made fun of my stuff the whole time, you got it all done.  I love you.  My closet is functional.  (Photos to come).

Tuesday, July 6, 2010

Bonus Siblings

The 4th of July weekend was jam-packed for me.  I had such a great time with everyone and doing so much stuff!  It was party, party, party and hanging out with people I hadn't seen in a long time.  It was fabulous!

I have finally come up with a term I really like for the really special people in my life - the people who are like brothers and sisters to me, but who aren't technically blood-related.  From now on they are my Bonus Siblings.  These are people I've grown up with, friends since I was very young, and people I'm so close to we may as well be related. 

I'm so lucky to have these wonderful people in my life.  Here's to my Bonus Siblings - Emily, Margaret, Sarah, Chris, Kyra, and Chase.  I love you guys!!!

Dating, or Lack Of Dating.

Here is a great reason I'm not having success with the online dating thing.  Here is one man's profile.  It's so absurd I just had to post it.  This man is 46 and lives in my state - but 46 is too old for me.  He contacted me, and I pretty much just ignored the email.  Here is why:

Tall, dark and handsome I am told by my kids! REALLY! Find out for yourself. I love to be spontaneous, daring and wild when the time permits. Honesty, truthful, faithfulness & good communication are the core for any relationship would you not agree? Someone that would compliment me as I would to her. My kids live with me full time. This is not the norm out there, yes I know! I would never change it for the world. They are my life! LQQKING for a lady to share my life with. They are getting older now and pretty much take care of them selves unless they need money! LOL! My almost 17 year old has three jobs and gets great grades. He loves his PS3 and Rock Band. Lets get to know each other then? I love the outdoors ie// sailing, roller blading, hiking, jet skiing (wave runner), fine wines, cooking, boating, fireplaces inside and outside, and most of all spending time with my family, kids and friends. We have a dog (St. Benard-Spinilli) & a cat. I simply love my job. I own my own company (two actually) and it allows me the freedom and flexibility to spend the maximum amount of time with my kids. I was born and grew up on the North Shore of Chicago. Yes, I am a flat lander at heart! My parents are both from Eroupe. To a Martini bar where the music is loud enough to hear and soft enough to talk to each other. A walk along the lake shore or out to the lighthouse up in Port Washington. I enjoy attending festivals, live bands, concerts, etc. Lets meet and see. I LOVE to cook Cajun, Thai foods myself as well as many other things. I have been told that I am a good cook! My best critics are my kids and they love my cooking. Not bad hey! I enjoy Boston Legal, CSI, Grey's Anatomy type of shows. I love to get up on Sundays and go to a coffee shop alone or with friends. I enjoy reading the New York Times a lot as well. Shall we meet there? !? !

Now, Bless Your Heart if you read that whole thing.  It's like his brain exploded on the keyboard and that is what came out.   Aaaand he comes with kids!  The youngest being 17!  I am in my early 20s.  Let's say it together "AWKWARD."

Friday, July 2, 2010

Life, or The Post Before THE POST

I'm deciding what I want in life.  I am figuring out what is most important in life.  I am figuring out how to maintain my current good health and trying to decide what to do with it - with all the extra energy and time. 

I know, this could be a big, important post.  Or it could be a short little one with some goals.  I'm leaning towards the 2nd option because I need a nap, but I've got some very important, mind-blowing ideas rattling in my head and I want to get them out there. 

I want to keep babysitting. 
I want to be a better dancer.
I want to enjoy my life and have plenty of time for family and friends.
I want to have time for my mindless TV and crafts.
I want to be out there speaking about cystic fibrosis.  I want to speak at CF Foundation events. 

It's that last goal I want to talk about today.  I am different.  I'm different from many CF patients.  I am compliant to a point - if it's not working for me, I won't do it.  I do what works.  I work hard to find what works and then I stick with it.  I work hard to figure out how to be as healthy as possible with all the added things I have on top of CF, and then I work hard to maintain that health.  If it means not doing everything a doctor or a nurse tells me I should be doing, that's okay with me. 

I know my body best - I've had CF for almost 24 years now.  I know what's going on inside me and what is working.  A doctor who has only known me a few years doesn't know my body as well as I do. Currently I go to clinic and see a CF doc who has known me for a year.  I love my new doc because she listens to me - and that is most important in a doctor.  They need to listen to you and get to know you as a person.  I miss my peds doc who I saw for 17 years.  He knew me - we'd probably fight now because I'm so head-strong, but I miss him.  The point is, after I transitioned to adult CF clinic, I tried doctor after doctor to find one who would listen to me.  I ended up driving more than an hour to a different clinic to find a doctor who fits me and who will work with me.  I found what I needed. 

That makes me different.  It probably makes me someone the CF Foundation wouldn't want speaking at events.  I don't do hours of treatments each day - I do a 1/2 hour.  I take all my pills.  And every other week I do Mannitol (yes, I'm still working on THAT post).  This is what is keeping me healthy - this, and my active lifestyle.  And by active I mean I babysit, I dance occasionally, and I work on my crafts and keep up with my life.   I hang out with friends and I do chores.  Many of these things I couldn't do a year ago.  One year ago I was spending my time waiting to do IVs, doing IVs, and then waiting to do IVs. 

Which brings me to another point. 

Happiness.  I found it. 

I am so happy I barely understand it.  I also have a hard time understanding why all the 'healthy' people aren't as happy as I am.  It's because I never expected to be healthy.  I didn't even dream about one day being this healthy because in my mind it was an impossible.  I knew I was doing round after round after round of IVs, and going to slowly decline until I was at the point where I needed to be evaluated for a lung transplant.  That was the reality I had accepted.  And I was determined to make that reality fun and happy - and I did.  I traveled to Europe, San Fransisco, and New Orleans.  I made sure I saw my friends as often as possible because I knew I wouldn't always have the energy to go somewhere and hang out.  With what little energy I had left I would slowly work on craft projects.  And that made me happy.

So when I found Mannitol (STORY TO COME SOON!), I couldn't believe how healthy I felt.  I didn't think it would last.  And now that it's lasting and looks like it might last a long time, I'm ridiculously happy with everything I do.  Dancing more makes me giggle and when I babysit I can't stop smiling when I chase after the kids.  Even crying kids make me happy because I have the energy to deal with them.  I love reading books to the kids because I have the breath to say long sentences without pausing.  And it makes me laugh. 

I have the energy to be the silly person I am inside.  I am the social person I wanted to be when I was sick.  I can do the laundry - and it makes me so happy I call my mom just so I can cheer and have someone cheer with me. 

And this is why I feel I am a happier person than most people I encounter.  I am living a life I never dreamed of having - and it's better than any dream I've ever had.  Now I'm dreaming about my future and what it might hold - and my dreams aren't just about a short wait for transplant and few complications after.  I used to dream that I would wake up from transplant with almost no complications and be walking the same day - THAT was my ultimate dream.  Now my ultimate dreams include finishing college, having hobbies and a career, and dare I mention it - a family. 

A. FAMILY.  Like, with kids living in my house.  I haven't dreamed about having children since I was little.  Since before I knew how hard a pregnancy could be on a body and before I knew how hard it is for CF women to conceive.  Don't get me wrong - I'm not dreaming of biological children.  I'm dreaming of adopted children and a full-time nanny to help me because I still don't have the energy of a 'normal' person and I need more sleep than average.  So it's a little bit different dream - but it exists in the back of my mind, and that's a little scary.

So right now I'm sticking to dreaming for the next couple months.  I'm dreaming of a completed quilt, an organized house, a fun party to celebrate one year of amazing health, and a successful trip to Seattle in September.  And that's more than I could dream about last summer - which makes me so happy.

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