Saturday, December 31, 2011
Sunday, December 25, 2011
Wednesday, December 21, 2011
Today at clinic I got an X-ray done of my abdomen and am getting tested for C. Diff. The X-ray showed no blockages but a definite fullness. As in stuffed to the gills, need to do something about it fullness. So tomorrow I get to spend all day trying to empty myself out so that I can enjoy Christmas dinner and not want to explode, literally, after my first bite. My fingers are crossed I only need the one day since I have a lot of food shopping to do on Friday to prepare for dinner on Christmas day.
Other than that my PFTs were slightly up (40% vs 37% last time) but I requested a round of IVs prior to starting class on the 19th. I go in for my endoscopic ultrasound on January 12th so we are going to start IVs then as well. There should be no issues with me being out to start on time. If I feel a lot better after my mini clean out tomorrow I might see about just making an appointment for that week and seeing if I really need to get IVs. Who knows, a clean gut might help the lungs out.
That is all my bloggie friends. Hope you all have a very Merry Christmas and Happy New Year!!!
Monday, December 5, 2011
Crochet Cyster's Crafts
Plus it will help us pay for our wedding!!!
Friday, December 2, 2011
Wednesday I had a very busy day in Boston. I started with CF clinic. My weight is up, my lungs sound fairly clear, but my inflammation is wreaking havoc on me still. Last appointment I was 50% FEV1 (fluke but still) and this time I was 37%. Part of that was because I had to avoid any duoneb or symbicort before my PFTs at transplant clinic after CF clinic. Shhh I did about 3 minutes worth of my duoneb at 7am so I could at least function somewhat. My guess is I am about 42-43% based on my SOB and overall feeling healthwise. So we decided to put me on 2 weeks of oral Cipro and I go back the week of Christmas to see if I have improved at all.
After clinic it was off to get a full set of PFTs done and a 6 minute walk test for my transplant evaluation. PFTs were uneventful, just like usual lol. The walk test I started off slow so I could maintain my pace the whole time, but I ended up having to slow down about halfway through. My O2 wasn't too bad at least. I dipped to 88% at one point, but since it was reading my HR at 71, we weren't sure how correct it was. So 90% was written as my lowest sat for the walk. I have no idea how far I walked, as I didn't ask. One thing I found interesting was my BP before the walk was 99 (top number I don't remember the bottom number) and 129 (again only top) after. That's quite the jump!
After that I had a 90 minute reprieve to eat lunch and relax till I had to go get my bone density scan done. Since it has been almost 6 months since my hysterectomy, it was time to get scanned and make sure I haven't started to loose any bone mass. We shall find out in a couple of weeks!
Other than that, nothing exciting to post about. Only things I have left to do for my evaluation are my last shot for the Hep B vaccine, dentist appointment and the 24hour PH probe. That one I am not looking forward to! Tube down my nose in my stomach for 24 hours....yay......
Tuesday, November 15, 2011
I thought having the hysterectomy would have made my reaction to babies and pregnancies much harder to deal with, but I have noticed no change. The only real difference is that I no longer think to myself that maybe it wouldn't hurt to have a baby of my own. Now I know that possibility is gone, so I no longer think it. But it doesn't make it any harder on me, if that makes sense.
I see these women, some girls I went to school with or worked with or knew through other friends, having babies, posting pictures of their families and the smiling kids, and it makes me hurt. I knew these women when they were just kids themselves. It is strange seeing them with families, with adorable babies in their arms, with their proud husbands by their sides. It makes me want that for me and Peter.
I know I will have a step daughter soon, and I know she calls me mom already, but it is NOT the same. I don't have the same love for her that a mother has for her baby when she holds them in her arms for the first time. I don't have that special bond, that connection that makes motherhood so precious. I don't get to have my son/daughter hold my finger for the first time, or smile at me for the first time, or hear momma for the first time. I missed out on all of that, and it makes me hurt. Not sad, hurt.
These feelings don't surface very often, thankfully, and usually don't stay for long......
Monday, November 14, 2011
If you are interested in purchasing on (or more) see her website Here.
Saturday, November 12, 2011
Peter and I have a chance to win $5,000 for our wedding and when you vote you can win a $500 Michael's gift card :)
Please help us make this wedding super special!!!
Tuesday, November 1, 2011
My PCP and I decided to stop the Wellbutrin, restart the Celexa until my stomach settled then try a lower dose of Wellbutrin. So tomorrow I will be trying the Wellbutrin again, but keeping on the Celexa for a week to see if that helps. If neither helps with the nausea then I will have to decide if I want to stay on a reduced dose of Celexa and deal with the side effects, or to try to ween off of them altogether. The latter of course opens me up to crazy mind games and bad moods again. However, I am in a much better place than I was 4 years ago when I started on the meds. So perhaps I will be OK weening away from them. Only time will tell, as the saying goes.
Last week I had my follow up transplant appointment to discuss all the testing I had done. I didn't get a chance to meet with the NP since she had an emergency that morning so I am meeting with her this Friday. But I did get to see nutrition and the social worker. Everything seems great so far. My weight is stable and at a good place. I did mention that the Celexa has played a huge part in my weight stability recently and that I will probably be going off of it. If this happens I will have to work extremely hard once again to keep my weight up. If I get below 17.1 BMI then I would be deemed too thin for transplant. All that I really need to do is get my teeth checked out and start pulmonary rehab. I think I am going to wait until Christmas break to begin that though. It is 3 days a week and right now with my grad class I know I won't be able to handle them both. But if I am already doing the 3 days a week when next semester starts I can work class into it.
That is about it. Health has been stable, I guess. Preparing for winter and the cold season.
Wednesday, October 19, 2011
So far things seem OK with my mood. I seem a bit happier. She did warn me that some people experience manic episodes or anxiety. So I might be experiencing some mania. That's OK.
Unfortunately I am also experiencing some of the not so pleasant side effects, such as sleeplessness and nausea. The nausea is the worst. I can deal with some restless sleeping, but feeling sick to my stomach for a few hours a day is just blah. Yesterday was the first day I really noticed it. Sunday I felt a little nauseous but it passed quickly. Yesterday however, I ended up laying down to try to get it to pass. I had gotten up at 6am (woke up and couldn't get back to sleep) so I thought maybe that was the issue. That didn't work so I had some ritz crackers and plain white rice and I felt much better! Seemed I needed some food in me. Today I am trying that again, but with a bagel and butter. So far its not working. I might have to whip out the white rice again today. I also noticed that it seems to come on at the same time. Yesterday it was around 10am and today it was just a little before that. I might try taking it in the mornings and seeing if that helps any.
Anyway, that is it for me. I have a meeting with the transplant team next Wednesday to go over everything so I will make sure to post what happens!
Saturday, October 15, 2011
Then my mind drifted to how I felt physically. I took a somewhat deep breath (for me anyway) and let it out slowly. I could fill myself up, apparently halfway, according to the PFT machine. Inside I could feel the rumble of some mucus. Totally different than only a few days ago when I was crystal clear of goo. My exhale had a hint of crackles in it. I lasted a whole 4 days off of IVs before the mucus came back. But I don't mind. You see, I got over a week of clear, unobstructed airway inhaling. I didn't hear crackles, I didn't feel crackles, and my doctor said I sounded amazing. That was the best part. I sounded amazing! Me, going through a transplant evaluation sounding amazing! 50% of my airways were working. How awesome is that, and considering I don't think I have ever been above 80% it is REALLY amazing.
However, this 50% and the 50% I was at 3 years ago feel entirely different. How so I bet you are wondering? Well its not just a number. Yes, the number itself is important for many reasons, but it really doesn't paint a great picture of how you feel. The only thing that is similar is my coughing. This type of cough I have had forever. Sometimes it is mucus filled and other times it is entirely inflammation. But either way the cough is there. The differences are a much longer list....
Energy level - now I NEED 10 hours of sleep to function and not be miserable. Then I was sleeping 5 maybe 6 hours a night and functioning like a champ.
Lung pain - it was almost non-existent 3 years ago. Today I am always in some sort of lung pain. It varies from just barely there to OMG where is the Motrin.
Mucus - I used to rarely cough stuff up. It was there sometimes but it was very difficult to get it up. Now (notwithstanding this resent clean-out) I can cough up goo almost daily. Before green scared me. Now it is a color I am used to seeing.
Exercise - though I couldn't run a mile, I could dance all night long, with a few breaks for coughing fits and some rest. Now even the thought of dancing all night makes me want to sleep for a week! Also the need for O2 with exercise is new from this last 50%. Yes I did monitor my O2 and though I don't dip far I still go into the upper 80s, sometimes lower (like class on Tuesday when I walked in my O2 was 84% lol).
Travel - Loved it and it didn't bother me at all. I could travel all the time and I didn't need to rest up like I do now. It takes me a few days to recover from traveling now. Whether its plane, train or car I am exhausted after visiting family and friends. Mainly because of lack of sleep which is in point number 1.
So you see, I might be at 50% lung function right now, but I feel more like my baseline of 40%. I guess on October 26th we will see what I am at by then, as that is my follow up transplant appointment.
Tuesday, October 11, 2011
Saturday we went to the venue and put the deposit down and officially picked our wedding date. It felt great to be able to make such a huge decision! Sunday we went to the Topsfield fair and I saw my afghan on display with a beautiful blue ribbon hanging from it. I won first prize in my crochet division. I was stoked! It totally made my day. Monday was my 31st birthday (yay for another year!), and my soon to be sister in law, niece and step daughter went wedding dress and bridesmaid dress shopping with me. We had a blast! I think I even found THE dress! We had margaritas afterwards to celebrate and they were delicious! That night I got an email from my college saying I had been officially accepted into the graduate program. I was floored and totally NOT expecting that! I was told I would need to take some classes and get more academic referrals in order to be accepted. So to receive that email totally took my breath away!
Then today the shocker! Yes there IS more....I hit 1.47L, or 50% with my FEV1. SAY WHAT?!?!?! Yeah that number is higher than I have had in like 3 whole years. Amazing for me! I feel fabulous and look great. Now I just have to hold on to that wonder number until I walk down the aisle.
Being the realist / pessimist that I am it makes me wonder when the downhill will start. It has to start at some time right? I can't go up and up and up can I?
Don't worry I am not sulking and waiting around for it to happen. I am thrilled with what HAS happened since it seems to me its been a while when so much has gone my way. I plan on finding a way to embrace my new found healthy numbers and live more.
I am very very pleased with this all!!!
Monday, October 10, 2011
Its OFFICIAL! How awesome is it to receive that on your 31st birthday :) fabulous present indeed! :)
Friday, October 7, 2011
Now on to the details. My favorite part. And to celebrate my 31st birthday on Monday I am going dress shopping!!!!! Yay!
Wednesday, October 5, 2011
If any of you know of foundations or organizations that can grant her money I would love to hear about them. Or if anyone has a vest they are no longer using and want to get rid of I am sure she would be willing to pay for the shipping. Please send me a face book message if you have any information that can help.
Thanks in advance!
Thursday, September 29, 2011
Wednesday, September 28, 2011
Monday, September 26, 2011
Then he proceeds to show you your scans and explain things. I was thrilled! I haven't seen my lungs in years! Holy whiteness! A bunch of spiderwebs all over and a big pocket of air in my tummy. He said I probably need a good burp (or a fart ha!). He was also very excited that I am here for the evaluation work up. He told me best of luck and he hopes I get many years out of this (you and me both!!!).
I had my right heart catherization this morning. I was expecting to be sedated at least slightly, but I got nothing. Only some meds to calm my lungs down so I didn't cough. In all honesty the procedure is not that bad, in hindsight of course. They numb your neck, drape it and put your legs up. You feel pressure, much like a picc insertion and I could hear the threading of the monitor. As soon as they stuck me to start, the water works started. I felt no pain but emotionally I must have been holding it in. Its the first time I have really cried since being told about the evaluation. I remember them calling out numbers and then I would have to breathe in, exhale and pause. So I can see why you can't be sedated at all, now. If they had told me that from the get go I would not have been so "ahhh" about it all.
That is the only test I had done today (besides chest x-ray and sinus ct scan), but tomorrow I will get everything else out of the way. I have started my IV meds already and hopefully will be home by Friday so I can get back to my fiance!
Friday, September 16, 2011
Thursday, September 15, 2011
We decided to couple my transplant evaluation on the 26th-27th with the beginning of a clean out. So I will stay a few extra days to start the IVs then come home on them. I was already going to miss my 3rd grad class so I am not too put out by this. And when I show up with IVs in my arm, she won't be able to get mad ;)
So that is about it here. Nothing to really report. I do plan on doing a video from the hospital about the transplant tests and the stay so stay tuned in 2 weeks for some new YouTube postings.
Sunday, September 11, 2011
The answer I can give is:
At work. I was 20 years old and had just graduated from college that June. I was still working at my mail processing job while I waited for something in my field to come along. It was Tuesday which tended to be a slow mail day. I was sitting at the machine with my partner when one of the women came in and said one of the towers had been hit by a plane. My first thought was "wow what a bad pilot!". Then came the words I will never forget "the second tower was just hit". Then I knew it was NOT a bad pilot. Something was happening, something very bad.
We all stopped working and turned the radio on to listen. I don't remember much of the radio announcements or anything like that. I do remember one of the women running home to grab a TV so we could watch it. This was before smart phones and instant news feeds (BTW saying that makes me feel old). When she returned we sat back and watched. We watched as the feeds came in about the pentagon and flight 93 in PA.
Through all this I thought to myself that my brother needed to leave the country. He needed to sneak away to Canada to avoid being drafted because I knew that we would not just let this happen. I knew there would be a war. I am thankful there was no draft. I am thankful my brother stayed. Not that I wouldn't have supported him but as any sister would be, I was afraid he would die serving his country. Though a great honor, its still a loss.
Soon after we were dismissed and sent home. The rest of the day I sat on my sofa watching the news reports come in. As the towers began to fall I was in shock. You could see the people running away. See the dust and debris flowing like a tsunami on the war path. You could hear the screaming, the chaos, the terror in the voices of those reporting. NYC looked like a dust pile on the screen.
The images from that day are seared in my head. I can close my eyes now and see the metal standing up in the rubble. I can see the firemen walking on the debris. I can see President Bush standing there with his hard hat on giving a speech.
Afterwards, I decided to make a scrapbook with all the stuff I could get from papers. I even wrote a few pages out about what happened. Below is one part that to this day still tears me up:
"I will now go on to a much sadder note. Yes there is one. Think of all the children that were orphaned or lost a parent in a matter of one hour. I personally did not know anyone there but C knows a boy who might never see his father again. She told me how at school a boy was called to the principal's office from her class right after the second tower was hit. The boy was a trouble maker so the other kids teased him as he left. When he got to the office he was handed the phone. His father was on the other end. He had called to tell his little boy that he loved him and he didn't know what was happening. The boy returned to class to get his things and was greeted by the kids asking him what kind of trouble he had gotten into. The boy responded by saying his father was dying in the World Trade Center and he didn't know if he would see him again."
Here we are 10 years later, still fighting the war; Bin Laden is dead; Saddam is dead. Life has moved on, but the memories of that day will NEVER BE FORGOTTEN.
Monday, September 5, 2011
Saturday, September 3, 2011
Sunday, August 28, 2011
When I was in 7th grade my mom and her boyfriend at the time got job offers in Atlanta GA, which they decided to take. It was a new experience and we were going to pack up and move down south.
At this point in my life my parents had been divorced a good 10 years or so. Every other weekend my brother and I would go up to my dad's to visit. He would pick us up on Friday night and drop us off Sunday afternoons/evenings. I was a very shy child and since I didn't really grow up with my dad, I was nervous around him. I remember getting flowers on Friday nights from him, trying to bribe me so I wouldn't cry. There was a guy (he is still there too) that sold flowers out of a bucket right next to the train station. We would stop and he would get them for me. I think I loved my dad, but I wasn't really sure about him. I was 3 when my parents split up so I don't have any memories of him living with us. Given this history, what happened when we decided to move 800 miles south was shocking.
I remember it clearly. My dad dropped us off that Sunday night. I think it was to be the last weekend we spent with him until Christmas (when we came up and spent a week with him in Vermont). I remember the house, the green sofa next to the front door and sitting on the arm of it while we said good-bye. Then out of nowhere I started bawling my eyes out and telling him I didn't want to leave him. Much like in the movie the Patriot when Mel Gibson's little girl finally talks to him and starts sobbing for him to stay. That scene always makes me think of that melt down I had with my daddy. I can remember hugging him tight and crying. I was 12 and finally realized how much I did love my daddy. And since that point he has been my daddy through and through. I love him to pieces and can't imagine life without him.
We may not talk all the time, but I know he is there. I know if I needed anything he would be here.
Saturday, August 20, 2011
Wednesday, August 10, 2011
Saturday, August 6, 2011
The shortness of breath is bad. The need for at least 3 treatments a day is strong. And my energy is non-existent. This past Friday I had my 3rd dance lesson and I coughed the whole time. I actually had to explain to my instructor I have a lung disease and that I am not contagious, nor about to keel over (we hope lol). About 30 minutes into the 45 minute session I was done, but I forced myself to complete it and then passed out on P around 7pm for a quick power nap. Literally I was laying on his arm lol.
Today we went car shopping and it completely drained me. And we only visited 2 lots! Happy to say the second lot we purchased a vehicle (Mazda CX-7). So we had to hang around to do all the paperwork. I was just so tired I could have curled up on a bench and slept for hours.
I will be sure to post an update on Wednesday after my appointment!
Wednesday, August 3, 2011
Today was surreal, but not really an emotional day for me.
When we first walked into the clinic and I saw the “Lung Transplant” sign on the wall I got that burning sensation in my eyes that I might cry. But I blinked them back and proceeded to check in. Because I had quite the entourage with me, P and I stayed in the lung transplant waiting room (I was masked up) while my family stayed in the adjoining one.
Right around noon I was told I was going to need to leave the clinic because there was an emergency appointment coming in and we were infectious to each other. She took my number down and we all went to lunch in the café. We were able to return to the clinic around 1pm and were lead into the viewing room to watch a 30 minute video on lung transplants at B&W. It was very informative for my family, and somewhat for me. A lot of the stuff they talk about I am blessed to know already from my extensive online support community. When the video was over we all headed into the waiting room, together since we were the only ones in there at that point. I got a nice surprise then!
The rest of the appointment was just a physical exam followed by a question session. We went over my history and the Lynch Syndrome issue. I have been cleared for a transplant, as far as they are willing to do it. Apparently I have been the talk of the conference room for a few weeks trying to decide if I was too high a risk to be a recipient! This could be a fun yet scary experience, being the first here to have a double lung transplant while also dealing with a high risk probability for cancer. After chatting we decided to proceed with the evaluation process. On September 12th I will be admitted for my overnight stay and get a majority of the testing done. Some of the follow up tests like dental exams will obviously need to be done outside of the hospital. Luckily I don’t need pap smears or pregnancy tests though.
It was nice to get in and get things rolling. They are aware that I don’t feel I am in need of being listed as of right now but that I do want to start the ball so that if I get sick fast I am not struggling. They agree completely with my choice too.
Since I have officially started the transplant evaluation process, be sure to look for more updates and YouTube videos.
Thursday, July 28, 2011
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
Wednesday, July 20, 2011
Tuesday, July 19, 2011
Monday, July 18, 2011
Thursday, July 14, 2011
Saturday, July 9, 2011
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 http://mycfjourney.blogspot.com/2009/11/my-new-cf-tattoo.html
#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 http://mycfjourney.blogspot.com/2010/09/surprise.html
#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 http://mycfjourney.blogspot.com/2009/01/asid.html
#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. http://mycfjourney.blogspot.com/2011/06/no-one-puts-baby-in-corner.html
#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
Tuesday, July 5, 2011
Sunday, July 3, 2011
Thursday, June 23, 2011
Wednesday, June 22, 2011
Thursday, June 16, 2011
Monday, June 13, 2011
Thursday, June 9, 2011
Monday, June 6, 2011
Wednesday, June 1, 2011
Those of us involved with the fund want adults with CF everywhere to know about this opportunity. So if you aren't already a fan, please visit our Facebook page and become one. My soap-making partner and I are giving 20% of our profits to the CDF this month. As part of our final push to gain more facebook fans and exposure for the CDF, we are having a raffle for a bar of soap. If you go to the CDF facebook page, become a fan, and then refer a friend or two, you are eligible to win. (Be sure to click "like" on the thread about this.)
Thank you for your support and for helping to spread the word to cystics in need!
Sunday, May 29, 2011
I met her sister first. I told her who I was and that I was there to show the family our support from all of the online friends Bree made, and who couldn't be there themselves. She asked me where I was from to which I obviously replied Boston, MA. She got this look of pure wonder on her face and started crying. She gave me a huge hug and told me should was so thankful I came this far for them. That of course made me sob lol. I met her parents next. They are so awesome! I see where Bree got her personality from. I stayed for a bit to watch the slide show and to just look around at the people. I flew 401 miles and drove 104 miles to be there, I was going to make my time worth it and not stay only 15 minutes.
I got a few extra memorial cards to send to some people who wanted to be there but couldn't.
After I left I decided to take a trip to Chapters. Bree's favorite place. It was kind of surreal walking around the store that she has frequented so often. I bought two books while there. I know she would appreciate them both.
I drove around a bit and was able to see the University of Guelph. Its a beautiful city! I took a few pictures to document what I saw and so those that wished they could be there can look at these and maybe feel like they were.
That night and again Sunday when I was going home, I felt depressed. Just down and blue. When I returned to my hotel room after the adventure around town, I had an overwhelming desire to go home. I was dreadfully homesick - something that very rarely happens, and only has when I have been in the hospital. And the suckiest part was I could not use my phone because it was on roaming. I connected to WiFi though so I at least could talk to P that way. Luckily when I woke up I felt better for a bit.
I still can't believe she is gone. It still doesn't seem real to me. I miss her so much. I know it time the pain will dull, but that does little to console now. I just want to talk to her one more time. To see her post a sarcastic witty status update. To make a goofy comment on one of my pictures.
I'll see her again some day. This I know is true.
Saturday as I was crossing the bridge into Canada, I had the strangest deja vu. My dream immediately came to my mind and I knew I was supposed to be there. Of course it didn't take me years to cross the bridge, but in a way it did. I became friends with Bree 4 years ago. And it took me till she passed to make the journey to see her. There was no "her" in the physical sense (they are doing an autopsy to see just what happened to her) but she was all around us that day. In the laughter, the tears, the tea, her recipes that the family cooked for everyone, the music and the pictures. She was there. And I am so thankful that I was there too.