Thursday, July 28, 2011

Blogger Challenge!!

A great bloggy friend posted a challenge for us fighting chronic illnesses. So here is my challenge response:

I think that our generation - the 20+ year olds - with CF have it much different than the "newbies" being born today. Our parents weren't aware of as much, there wasn't as much known, the medications were different, the treatments were different, things were just plain different. However, we are still here, living, getting older, having babies and transplants. So somewhere along the lines our care transitioned over to the "new" care, but did it happen in time?

When I was younger I was beat on by my mom. I know I was supposed to do Albuterol with .09% saline as my nebulized treatment. I ran around like any normal kid did, only I coughed and hacked the whole time. And I ate like a pig. But my lung function was never high. Looking over my chart I have never been above 80% and really I don't even know if I made it that high. As far back as I can remember, being in the upper 50s was my thing. Maybe I would have been higher if I had been more compliant as a teen. But as my friend mentioned in her post, when you don't notice a difference its hard to continue on.

My medications didn't make me feel better. If anything they made me feel worse. I got shaky and coughed - which at the time I despised! I wanted that "normal" teenage life. I got better as I got older, especially after my first hospitalization at age 18. But I didn't truly become compliant until my mid-twenties. Then I discovered how hard life was without my medications. Compliance wasn't so much about helping my lungs live longer, it became helping me to breathe and live my life.

I sometimes wonder if I had taken all my medications the way I was supposed to from diagnosis on, would I be facing a transplant evaluation? Or would I still be working full time and pushing myself just as hard? I will never know, but I do know I don't regret one thing I did, or did not do. I lived those years of my life as I wanted. I complied with myself. If that sends the doctors to say no you can't be transplanted then I will deal with that. But I doubt it would. I am compliant now. I do my nebs, I take my pills, I do my vest and I exercise when I have the energy. I cough up the goo when I need to. I go on IVs when I need them. I listen and I am proactive. I have changed. People can change.

Diseases are very unpredictable. They can change at the drop of a hat. They make their own rules and they don't listen when they are screamed it. If someone does what they are supposed to do 24/7 they are still going to face the "true" disease. Maybe it will be pushed back a few years or maybe it won't. But no one knows that at the start. No one knows what their life is going to be - terminal illness or not. Should you be compliant? YES. But you need to figure out what compliance means to YOU. Do you allow yourself to miss a treatment here and there because of life? That's fine. Do you skip treatments daily and probably only do a few during the week? That's not fine - that's not compliance. Compliance is doing the best you can.

Now I pass the challenge torch on to my bloggy friends. Here are the "rules":

1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.

2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.

3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.

4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.

5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.

Thursday, July 21, 2011

My Pathology Report

I am so glad I am not a doctor because the language used is mind boggling!

My incisions are healing up nicely. They don't look bad and they are so tiny you will barely be able to see them when I am all healed!

There were only 4 issues found out of the 6 organs removed. Really not too bad and 2 were nothing to be concerned about.

On my cervix was some metaplasia which I have had before. It can lead to dysplasia which are pre-cancerous changes. I have gone through all those procedures when I was found to have dysplasia about 5-6 years ago. Again nothing to worry about, but I am thankful my cervix is gone.

On my right Fallopian tube they found a few peritubal adhesions. Basically little polyps on the outside of the tubes. They were found to be benign thankfully. Reading up on those adhesions I found they can lead to infertility so I wonder if I would have been able to have babies without CF and LS forcing me to make the decision to remove the baby making parts.

On my right ovary again they found cysts, which have not gone away from my ultrasound in December. That's 7 months of hiding out and again I am thankful it was removed. The cysts were benign as well.

Then on to the uterus where it showed I had endometriosis. Apparently it has never given me issues.

Seems that taking out my baby making parts was a good idea. Who knows if any of these polyps would have turned cancerous...or if given what was found, if I ever would have gotten pregnant...

My second video on YouTube all about Lynch Syndrome and my choice to have this done:

I spoke with a friend of mine tonight who is a nurse and she went over the report with me thoroughly. The doc just pointed out the issues they found. Turns out those lower back cramps I had with every cycle, was the endometriosis! I had adhesions on the back of my uterus that were pulled during my cycle and caused the cramping. She asked if I had lower back pain and showed me where and it was like I was pointing to my own back! So I did have issues but never thought much of them. She also said that I was raked with scar tissue on my insides. Basically it seems like my organs where all over the place and stuck with scar tissue, like a huge cobweb! And that one ovary was connected to my bowel. I'm kind of intrigued and would have loved to see what I looked like. Gross and disgusting yes, but pretty nifty too!!!

Wednesday, July 20, 2011

I Get So Emotional Baby....

What do you get when you take a woman's reproductive organs out?

A crying, antsy, moody, unstable Amy.

I think I have my period....I mean I think my body thinks I have my period. Stupid shit has made me cry all day today. I have been moody and craving the things that I normally crave around my time of the month....and I can't stop crying.

Tomorrow is my first follow up appointment and you know I will be blogging about it. Hopefully we can chat about some hormone therapy to wean me down to menopause.

Till then I must avoid baby pictures, animal pictures, and anything that is remotely happy (like a friend blogging about dancing at her cousin's wedding - yes you know who you are; or another friend blogging about meeting said other friend - again yeah you know who).

Tuesday, July 19, 2011

My First Video Blog!

Here is my very first video. I apologize for saying "um" so many times. Drives me crazy when I do it so hopefully next time I get better. I have uploaded it to YouTube as well.


Monday, July 18, 2011


My new YouTube Channel

I haven't uploaded any videos yet but I plan on doing a few over the next few months. I want to get ideas of what to talk about. So I am opening up the "blog lines" to my readers to ask what YOU want to see me talking about.

It can be anything from a Q&A session about CF, to how to start a crochet scarf. You let me know and I will post my first video sometime next week!

Thursday, July 14, 2011


Not gonna lie...recovering has been a bit rough. Easy compared to some I am sure, but considering this is my first real surgery, its taken its toll on me.

Pain has not been a big issue around the surgical site. Pain in my right shoulder has been abysmal! Sunday I woke up thinking I slept on my arm funny then was reminded that shoulder pain is to be expected from being pumped full of CO2 for surgery. By Sunday night I was in tears and Peter had to run to the store to get me a heating pad. It was horrific! I was taking pain meds solely for the purpose of helping my shoulder. Monday I called the doctor and asked if there was anything I could do and they told me time. The CO2 has to be reabsorbed back into your body, through muscle mass (of which I am lacking). So they said it could take a few days. Well here it is 5 days later and though I can move my arm, it is not without help from the left arm. From the elbow up my arm is practically dead. I can move with some pain but only if I push it around with the other arm. Otherwise is just sits there. Almost like it lost the connection, very strange.

Now that a week has passed and I have gotten my uvula to shrink (well I didn't but mother nature decided to give me a break) I am able to cough without fear of throwing up. Only now I cough incessantly! Quite annoying I tell you. I will pop up from full sleep to a major coughing fit that lasts for 15 minutes or more. These fits are happening at least 6-7 times a day. They never result in anything coming up (mucus or food lol) but leave me totally winded and exhausted. And the coughing is killing my arm as well. I am a mess! On top of that for the first time in my life I CAN NOT sleep in my regular sleeping position. Usually I have 2 pillows and it elevates me enough. Now I have a big pillow from the sofa propping me up so I am elevated from the lower back up. Its comfortable for a bit, like a recliner, but after 8 days I just want to sleep on my side again!

Other than those issues I seem to be healing well. I am exhausted, and frustrated that I can't do much thanks to my arm. Though even with the arm working, there really isn't much I can do. Laundry is too much stretching, food shopping is heavy, I can't drive yet because of still being on pain pills, cooking is fine but I need to be creative with what we have because I can't get to the store. Luckily we are going shopping this weekend and I can stock up for the next couple of weeks.

I see the surgeon the end of next week and she will let me know if they found anything funky in my discarded organs. I wonder when the reality of what I did will sink in? It hasn't hit me that I TRULY CAN NEVER have babies of my own, EVER. Even after I was asked how far along I was (yes someone thought I was pregnant thanks to a slight bloat and asked me how far along I was in my pregnancy), it didn't really phase me much. Maybe in a few months, once my body realizes it can't produce children anymore...

Saturday, July 9, 2011

101 Things to do in 1001 Days

These are the ones I have not yet completed:

1. Pay off credit card debt

2. See a show on Broadway

7. Take a cooking class

8. Start riding horses again

10. Have the short story published

14. Take my jeep “muddin”

15. Take a Caribbean vacation

17. Get a professional massage

19. Have dinner with my dad and step mom once a month or every 6 weeks

23. Do volunteer work

26. Make homemade Christmas presents one year for everyone

27. Paint a picture

28. Do saline rinses religiously

30. Go to the movies once a month

32. Spend a night under the stars

36. Win a Halloween costume contest

37. Make candles from scratch

38. Buy a mountain bike and actually USE it

40. Go on a super romantic dinner

41. Display my Lenox crystal animals in something other than a moving box

42. Visit all 50 states (37/50)

43. Spend a day at the spa and not worry about price!

44. Go tubing down the Delaware

47. Make chicken noodle soup from scratch

49. Take an Italian class

50. Take a writing class

51. Visit Williamsburg VA and Gettysburg PA

54. Wish on a shooting star

59. Pick my own strawberries

60. Visit Times Square for Christmas

61. Go to Vegas

65. Eat more organic foods

67. Take NCIDQ exam...and pass!

70. Make a will

71. Do a scavenger hunt

72. Throw a surprise party for a family member or friend

73. Spend an entire weekend in bed/on the sofa (not sick)

75. Go ice skating

76. Go roller skating

77. Play volleyball

79. Spend more time with friends’ kiddies

80. Go to First Friday in Philly

81. Take a flying lesson

83. Finish Christmas shopping before December 1st

88. Buy more organic products

89. Throw a Halloween party

91. Get teeth whitened

94. Have a yard sale

95. Work on self esteem

96. Watch entire Disney animated movies collection

97. Curse less

98. Plant a tree

101. Celebrate completing 101 things in 1001 days!


#3. Make friends with people I wouldn’t normally be friends with. Sounds kind of mean but I am very picky about my friends. I changed that. With facebook it is much easier to be friends with people. I am not quite the social butterfly I was 10 years ago so having the computer makes it easier for me.

#4. Create a scrapbook. I made two this past year. One for a friend who lost her husband and another for my dad for a Christmas present.

#5. Print out all my pictures I have on my computer (that are worthy of printing). Done! 834 pictures later I got them all delivered.

#6 – Get computer working again so it reads CDs. This one was pretty easy. I only needed a new cd drive which I installed myself. Thanks to Kevin, I didn’t have to call anyone to get it set up for me and try to figure this all out.

#9 – Write a short story. I had begun writing a story when I was in school and I took a few extra days to finish it and make some changes. It is not entirely done and not ready to be sent to anyone yet, but it is done, it just needs tweaking.

#11 – Finish at least one book a month (33/33). I have read way more than this. I adore reading.

#12 – Take another history class. Finished my World History class with an A and starting Grad school in September hopefully!

#13 – Get a sleep study done for O2. Had the sleep study done, but "failed" it since I had just finished IVs. So we did it again while inpatient and I passed LOL.

#16 – Do the tourist thing in Philly. A friend of mine and I went to see the Liberty Bell and the Constitution when we were in Philly for the Princess Diana exhibit. It was great to FINALLY see the bell!

#18 – See my nephew more often. Though I don’t live nearby anymore, I make a point to spend as much time as I can with my nephew and now niece as I can when I am down visiting the family.

#20 – Donate all my old books to the library. This one was a help to me too! When I was packing to move I just put the books I didn’t want into a different box. Julie, my old roommate took them to the library by her work. She had some old books she wanted to take too.

#21 – Get all my pants hemmed. I am short, this is a known fact. And short people have a hard time buying pants that fit. Even with my 3 inch heels I was still walking on my pant legs. I finally gave in and dropped them off at the cleaners. A week and $80 later I now have pants for work that actually fit me!!!

#22 – Get a CF tattoo

#24 – Get rid of old junk. Did a whole lot of this when I moved and again when I have been up here. I enjoying throwing away old crap and decreasing the clutter.

#25 – Start exercising more. I may not be a runner now but I have at least started some exercising and I am working on getting into a better routine.

#29 – Delete old files off my computer. This one only got done because I was without the internet for 3 weeks!! I deleted all my old files and programs that I never use. I have a lot more space now!!

#31 – Smile at a stranger at least once a day. I try to do this when I go out. I don’t go out every day so obviously I can’t do this daily, but it is very rare that I go out and don’t smile at someone.

#33 – Go camping. We are going in August so I do miss the cut off but we are going so I am counting it.

#34 – Learn to knit/crochet. I can crochet like a fool! The knitting I need to learn at some point and I will. Right now I really enjoy the crocheting and I have so many projects that I am doing so it is hard to start a whole new way to do things.

#35 – Go to Disney World. Well I kind of cheated on this one haha! I wrote it in knowing I was going to go. Shhhh don’t tell!!

#39 – Back up all my blogs. Did it! Took a while to get them all copied but it is done! And now I write my blog in the file and then copy it to my BlogSpot. See worked well!!!

#45 – Learn to drive a wave runner. Peter and I rented a jet ski while on vacation and he let me drive for a bit! It was so much fun and by the end I finally figured out how to turn without slowing down so much lol.

#46 – Get a colonoscopy. I have had 2 now so I think I make it. Luckily I have had them done considering I have had polyps removed both times.

#48 – Make an edible beef stew. I nailed this one!

#52 – Learn to cook things other than chicken and rice. Peter will say I have got this down pat.

#53 – Start going back to church. We go on holidays, does that count?

#55 – Stay off of lung transplant list (active list). So far so good.

#56 – Celebrate 30th birthday with HUGE party

#57 – Send Holiday cards to family and friends. I do this every year now and I love it!

#58 – Update address book. All done!

#62 – Start doing Pilates/Yoga again. Tried Yoga and do not like it. Did Pilates a few times and it just doesn’t work for me. I get nauseous with all the bending and stretching. Not exactly productive exercise.

#63 – Date more and not be so darn picky about dates. Ironically a year after I wrote this I found my match. I dated a few times prior but I was never really one to date a bunch.

#64 – Keep a private, paper journal. I have one. I might not use it all that often but I do have it. I tend to use my blog for most of my thoughts, unless they are super emotional then I use my paper journal.

#66 – Visit grandparents’ graves. I have. Now it’s a bit hard since I am 300 miles away. But I have done it since I wrote this list.

#68 – Become a member of ASID

#69 – Save money. I got me a savings account with some dough in it.

#74 – Recruit more people to be organ donors. 2 people that I know of have changed their minds and signed up to be donors. It’s a start!

#78 – Stop working so much. Pretty sure going on SSDI counts for this one.

#84 – Go on a picnic. After the parade on the 4th we went to the park and had a BBQ with friends while we waited for the fireworks. It may not be a picnic basket and checkered blanket but it’s a picnic!

#85 – Learn to ballroom dance.

#86 – Bake homemade banana bread. The bread didn’t turn out too great but it was still good. Very heavy. I must find a lighter recipe….if one exists.

#87 – Recycle more. I even have Peter and his daughter recycling now. Go Me!

#82 – Actually go Christmas shopping on Black Friday. Yes I braved the stores and went shopping on Friday. I was going to go at 5am, but I was still too tired. Now I am glad I didn’t since I heard of a few deaths caused by trampling!!! OMG WTF?!?! I almost had #83 (finish shopping before December 1st) but I have a few more people to get and I know that won’t happen tomorrow. Next Year!!!! That was 2009 and I braved the stores AGAIN in 2010 while on IVs! That’s bravery lol.

#90 – Start birth control. Had a hysterectomy on July 6th so I am pretty sure that counts.

#92 – Meet more online friends in person. I may just have more online friends here in Boston than I do “RL” friends! We meet up quite often for doc appointments at the Brig.

#93 – Be more feminine (i.e. more necklaces and earrings) for work. Well while I was working I was able to dress all snazzy, now that I don’t work I just lounge in sweats a lot. But I do dress up when we go out on the town!

#99 – Do a random act of kindness. I can’t think of any off the top of my head, but its been 2.5 years and if I didn’t do this then my sorry ass is headed to hell in a hand basket!

#100 – Meet the man of my dreams. You all know I mastered this one ;)

Thursday, July 7, 2011

Made it!

Surgery is over! I have 3 tiny holes in my abdomen and a bunch of needle marks in my arms lol. All went well though. I am learning to cough without feeling like I am going to open things up. I tried holding a pillow there and it hurt more than helped. Right now I am coughing up dark greenish/grey cement. But that will slowly go away as I clear it all out. Its hard to cough up stuff without gagging since my uvula is swollen and when I cough stuff up it gets stuck on it (OMFG EWWWW). I had the nurses give me 1000 cc's of saline over night because of how thick the mucus was. It is slightly thinner now and again will diminish as I drink more and get more up. Overall I don't hurt that much. The bloated belly from the gas hurts more in my opinion, and the incision areas itch like crazy. It feels like I have a horrible case of PMS cramps.

My biggest obstacle is passing gas. I have a few times but I have to keep on it. Things are all moved around and out of sorts in that area so its all a re-learning game to me.

I have to monitor my oxygen and temperature and call if anything gets too low or too high.

That's about it! I am on pain meds and they make me sleepy so I am trying to only take them at night and stick with the 600mgs of Motrin when I am awake. Though I am sleeping a bunch especially after walking a bit.

I shall check back in a few days and let you all know how I am feeling!

Tuesday, July 5, 2011

Surgery Time!

My surgery is scheduled tomorrow for 9:30am. I will update my blog when I get back home :)

I admit I am nervous and scared. This will be the first time I am vented and under general anesthesia. It is also the first time I will need pain medication. Again I am nervous about that too.

Prayers and good vibes would be appreciated tomorrow!!! Thanks :)

Sunday, July 3, 2011

A Week in Wildwood NJ

My family and I (P and E included) had an absolutely amazing time down the shore in Wildwood. They have a huge boardwalk with 3 piers full of rides and games, a ginormous beach with a rubber walkway halfway down to the ocean so you can walk better, and we were 2 houses down from the boardwalk so getting there and to the beach was a breeze! The best part was spending 5 days with my niece and nephew. When I went to bed they were there and when I woke up they were there. I couldn't have asked for anything better.

We spent Monday at the beach. E, J and my mom had gotten new boogie boards that morning so they all brought them down. P and I decided to take a swim (ok he convinced me as I haven't been in the ocean in years past my lower calves). HOLY SMOKES! The ocean can wear you out faster than anything else! I made it out a little ways and had to go back in I was exhausted. We were out to our lower bellies (on me) before I got tired from jumping the waves. So I went back and laid down to read for like an hour. After that we did it again. We got much farther out and rode some waves. Then P had to lug me back in as I was totally done. Even kicking wasn't going to happen. My mom and aunt said when I walked out of the ocean I looked like I was going to drop dead. There was no color in my face at all and I was staggering. Scary to think what the waves can do to someone at this stage of CF. After that I again laid down and read some more till we all went back to the house.

Monday night was our big trip to the boardwalk. Everyone was riding rides and playing games. I stayed down with my niece when everyone would go on the roller coasters. J and E did a bunch of the kiddie rides when E wasn't on the adult roller coasters! My mom's boyfriend went to find a bar as he isn't a huge rides fan, and then a bit later P decided to catch up with him for a drink then meet us back on the pier. Well we eventually left and my mom called her BF to tell to him to tell P to meet us on the 2nd pier. P wasn't with him. So I went back to the pier to look for him. I must have missed him on the tram car (they have a tram that goes up and down the mile long boardwalk and P said he had hopped on so I must have missed him walking past it) because he was no where to be found. I headed back to the 2nd pier and as I did so I saw an ambulance and fire truck with their lights on. It made my head think and I started to get all teary eyed. By the time I found the rest of them I was full on crying and couldn't stop. I did this for the next hour. I was having fun and taking pictures but I couldn't stop crying. Eventually we went back to the house and P was there. Oh also he and I had left our phones at the house so we couldn't call each other). I was so worried I lost him lol. At least I know just how much I love him and got a glimpse of what would happen if I ever really lost him.

The rest of the week was great too. Wednesday P and I went para sailing and jet skiing!!! We were 375 feet above the water! I held on for dear life! I get motion sick and we were the last couple to go up so by the time we did, I was green and ready to hurl all over the place. Luckily I was able to keep it down but for the rest of the day I was a bit nauseous.

After that we met up with my sister in law and the kids at the water park. It was my first time at one and we had a blast! I actually climbed the steps up to slide down! 94 steps holy moley! I did it 5 times over 3 hours lol. There are different levels so I would stop at each one and take a few breathers for a minute or two. And I walked very slow up the steps, letting people pass me. The lines were super tiny so I wasn't worried about that part. Though a long line might have been better on the lungs!

We definitely had a great time and I am so glad we got to go. I am looking forward to our family camping adventure the end of August.