Saturday, December 31, 2011

In with the New Year.

As always our year had it's ups and downs. But you can't appreciate the good without the bad, I mean how would you know it was good if you had nothing bad to compare it too.

Overall 2011 was a great year many things to be thankful for and feel blessed to have another year under my belt! I had the worst health year in my entire life, 4 hospitalizations. That has definitely been the hardest part of our year, hardest on Colton. They started in April with what seemed like a normal CF flare up, I seemed to recover. But apparently not because I ended up back in through the ER in May with lung pain and shortness of breath. After another 3 weeks of IV's I felt better again. The doctor's thought maybe I had some bugs that were not showing up in a regular sputum culture, so they scheduled me to have a bronc-scope. So in July 20th I went in for the Bronc, came home after in A LOT of pain and ended up back in the ER that night. It was by far the scariest CF flare up I have had to deal with. I recovered again after 3 weeks of IV's again and felt great for the rest of the summer. Then in November I got a sinus infection, me and the rest of the country that is! But mine landed me back in the hospital, I really wasn't feeling horrible like in the past few hospital visits, but I wanted to get in and get better before all the holidays, and winter time. I have felt great since being done with that round the day after Thanksgiving. The only other thing I can think of that was that bad was Colton being bit by a friends dog and had to have 8 stitches in his cheek.

We had many blessings in 2011. We had a great sledding day at a ski resort north of us with my cousin in March. Colton also turned 7 in March, love celebrating his birthday's as much as mine! He got a trampoline which he had been wanting for a while. I had been fighting to get social security for about 7 years, and finally got my hearing in May, and the final decision came in June that I had finally won! Which took a huge burden off from us. We also finally won a fight we had been fighting with our local township about our house taxes. Had a great family vacation in northern Michigan with Colton. Took our annual trip to Michigan's adventure (an amusement park). Brad and I took our vacation together to the Drag Racing Nationals in Indianapolis. I spent some time working on my Hot Rod and running in on the track a couple times. It was truly a great year and we are happy to have had it.

What I look forward to in 2012. Spending more time with my family of course! But to be more specific, DISNEY! We are surprising Colton with a trip to Walt Disney World in Florida in March (so if you read this and see Colton don't say anything)! Another successful Great Strides for Cystic Fibrosis. Brad getting a vacation and bear hunt with his Dad. And most of all I have hope for a healthier New Year. As far as New Years resolutions I don't have one, I never follow through with them. So to all of you and yours HAPPY NEW YEAR!

Tuesday, December 13, 2011

Wish I may wish I might first star I see tonight.....

Coming home from a family Christmas party Sunday, this is the conversation between me and Colton.

Colton- Mom I see the first star! What's the song to make a wish?

Me- Star light, star bright, The first star I see tonight; I wish I may, I wish I might, have the wish I wish tonight.

Colton- Star light, star bright, The first star I see tonight; I wish I may, I wish I might, have the wish I wish tonight, I wish they could find a cure for Cystic Fibrosis.

Me- You know you should wish for something for yourself sometimes.

Colton- Nope I will always wish for a cure.

Me- That's really nice buddy, thank you.

Colton- Your welcome, I love you Mom.

I love you too buddy!

Monday, December 5, 2011

Why I Fight...Blogger Challenge

Why I Fight for a Cure for Cystic Fibrosis...

To live for Colton, my 7 year old son. That is the very first thing that comes to my mind when people ask. And then there are the other reasons that come to mind immediately after that. My husband, no one signs on to be a widower. My Mom and Dad no parent can imagine outliving their child. My Brother, he's one of my best friend's. My Grandma's, they once thought that they would outlive their grand daughter. For everyone in my family immediate, distant, and friends whether they are my best closest friends or the friends I have on facebook that I've never meet. You could say that I fight because I almost think it's expected of me, I mean what else do you do when faced with adversity. This is my life, I know no different, I have no idea what it's like to NOT fight for my life. And to be completely honest I wouldn't have it any other way, true I would love a cure and be "normal" or "healthy" for obvious reasons. But I almost guarantee I have a better appreciation for life then the average person, and appreciate the little things with more gusto. To me this is easy, when I think of the awful things in life me fighting CF is not one of them (most the time). The awful things is my Grandma losing her Son and Husband within 2 months of each other, a friend I went to school with and her 3 year old son dying in a horrific car crash leaving her 5 year old daughter motherless, and Scot and Mindy Christenson losing and having to bury their baby boy at just days old. Those things are awful, if this is the only burden I carry compared to some other awful things in life I can more then handle it. Then there is for all the other CF'ers out there, that my life has in some how helped with fund raising and research enough that soon a baby born with CF will be nothing, and those of us living with it will have our progression stopped in it's tracks so we can live our lives out long beyond what was expected for us. Which for those who don't know, my parents were told I would not live past elementary school, I have a diploma, I would never be old enough to marry, I have been married for 8 years, I could never have children, my son is the light of my life! And it comes full circle to why I fight.

Please take a look at this video that was put together by Emily's family and friends.

Emily's Entourage Video

Then take the challenge below!

Here are your official rules for participation:
1) View Emily's amazing video here, then consider making a donation of your own or "liking" her page on FB (neither is required, but both are encouraged!).

2) Create your own blog post, FB status update, or other form of social networking tool (letter, email, whatever). In the body of the message, place a small paragraph of why YOU fight for a cure for cystic fibrosis and why this cause matters to YOU. This can be your CF story, your wish for the holidays, your version of community -- whatever.

3) Link to Emily's Entourage Website and encourage your own readers to take up the challenge.

4) Comment on Piper's blog (it won't link for me for some reason) with a link to your blog a message about how you shared this vision for an automatic entry into a drawing for a very special CF/transplant-awareness prize package, including gifts from, apparel, and other fun goodies!

5) Re-post these rules on your own page.

Monday, November 14, 2011

A day in my life with CF!

So my cousin's girlfriend has an assignment to do for her photography class. She asked me if she could document with photo's a day with me and everything I do with CF. I of course said absolutely! So I have been being photographed from the beginning of this morning from when I started my vest this morning, doing my morning IV med, sterilizing nebulizers, making and drinking my high calorie shake, laying all the pills out I take in a day, which is 47 all together including all my enzymes. We also got to document when my nurse came and changed my dressing. It was a good day to document CF. I was really excited for her to do this and honored for her to chose me and my story. She already showed me the ones she took while she was here and it was really neat to see myself from that perspective doing all my treatments and stuff, seeing what others see. I can't wait to have it put in a video slide show to use as a fundraising/awareness raising tool. I will share it when I get it!

Monday, October 10, 2011

A blog NOT about CF!

Me and my "baby"!

I blog a lot about my CF, it's just usually what's going in my life, and when it's not I'm too busy enjoying the good parts of my life! Well since I was in and cleaned out in July I have been feeling great and living and enjoying life.

My cousin and I lining up

One of the great joys in my life is of course Colton and I do everything with this kid and he does everything with me! But one of the other great joys in my life is my '69 Chevelle, it's like a second child to me! I have been working on it on and off during the summer slowly getting the parts that I needed for it. And although I do a lot of the mechanical work on it myself, I usual need help from my brother and my Dad, and they have been busy all summer, and my Dad works out of state and only home on weekends, so I really don't like taking all his time on his weekends. But he managed to work on it for a couple weekends in a row and got it all read for me to take to the track for open test and tune. I took it to the drag strip for the first time since I put my new motor in it (I had taken it the first year I bought it with the old motor). My best time for that day was 13.3 seconds in a 1/4 mile going 101mph, that is pretty good! I had a blast I LOVE drag racing! I love doing it now and I have always loved watching it. So we had plans for changing some stuff up and coming back in 2 weeks, that's kinda the point, and why it's called test and tune, you test the car out see what it's doing and tune it and change what you need to. We changed the fuel lines, carburetor, and fuel pump. I was having a problem of getting fuel to my engine and then it would die out losing my speed and better time. So after all the changes my Dad figured when I went back I could do at least 12.5. I never got 12.5 but I did get 12.7 at 107mph! My cousin has a race car so I invited him to come to test and tune with us and just run for fun, and my brothers girlfriend, Sarah, has a 2010 Camaro, and I also invited her to run her's for fun, she loves cars and drag racing too, I really more less demanded she come and run, because I knew how much she would love it after she got over the nerves and did the first time, and she did! Now she want's a "real" race car! I love my car and I love racing it! She's going in the body shop this winter, I'm so excited, she's gonna be as pretty as she sounds! I have only tested and tuned her, but next year I hope to enter an actual race!

Sarah and I lining up

One of my other loves has always been horse's I have loved horse's since I can remember. I had a Palomino Quarter-horse I showed in 4H when I was a young girl, he died when I was 17, I was devastated, but I was a teenager and had better things to do. I got another horse a Buckskin when I was 19 or 20, he was not trained well so I really didn't get to ride him much, and then I got pregnant and married and had little time to work with him. I had him for 3 years I believe, then when my son was about 1 we had to move and I had to sell him because we didn't have a place for him at our new home. At our old place we lived next to some great couple that had a horse farm and I would ride with the wife every once in a while. Well I rode with her the week before we moved, that was over 6 years ago, she told me to come and ride but I just never have. I miss my horse's and riding very much, and especially in the spring and fall because that's when I did a lot of riding. Well my husband works with and car pools with a very sweet lady, Judy, that has horse's, she's been telling him for a long time for me to come ride with her. Finally yesterday I had a very intense urge to go riding, for the past week it's been between 70's and 80's here in Michigan which is really crazy! So being so warm and beautiful I told Brad to call her I wanted to go riding! So he did, and she said send her over! So for the first time in over 6 years I got to go horseback riding, oh how I had missed the view between a horse's ears! It was amazing I got to ride a mare named Storie and she was a dream to ride, she knew what she was doing, I rode with Judy and her step daughter Maria. Storie was a leader because she has a faster walk and trot then the other 2 horse's. Horse's are a lot of work and although I long to have them again I can no longer handle the work they come with and I can't justifie making Brad do that work, because he has his own passions he enjoys, that he would rather spend his time on. I do not in tend on waiting another 6 years! I hope to make this happen a little more often. Although it's gonna be getting cold I'm confident I can get a couple more rides in this year.

Friday, July 29, 2011

Compliance, Judgement & Progression

I'm taking this challenge that was presented through a fellow CF blogger Confessions of a Cyster The challenge is as follows.
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.

This is so relative to me right now as I have been struggling to "manage" or "control" my CF. When the truth is I can't manage it or control it. I wish I could. I believe CF is maintained sometimes by how compliant we are, but I also believe that in some cases it doesn't matter how well you have taken care of your self this disease will take over for periods of time. My parents made me very compliant with my treatments, but they also let me skip treatments sometimes to live my life, because was the fight worth fighting for me to just be alive? No I was a child, I needed to live and enjoy the things kids enjoy like sleep overs, and camping. So as I grew into a teenager I stayed relatively compliant and have through my adulthood. Having become completely compliant in the past year, trying to re-gain some lost health.

I was recently criticized on facebook for supposedly being in denial about my disease progression, because I don't believe that what I have been going through for the past few months is, I truly believe there is an underlying reason. And I found myself defending MY illness to a fellow CFer. In his eyes I was in denial and needed to except the fact that my disease was progressing, because he had been through it and that's how it happen to him. Being in that position was weird, I was feeling like how do you judge MY CF story and MY progression based on your experience when we all know everyone with CF is so different. I hate the judging in some of the CF community! The your sick because you don't take care of yourself, or your CF isn't bad and that's why your healthy. I love to hear EVERYONE'S story's, whether they are in end stages or as healthy as a "regular" person. We all have our own story's, our own health stories, our own ways of dealing with OUR disease.

Disease progression is scary. I get scared every time I get admitted to the hospital, but I also don't let it run my life or overrun my thoughts. I do what I need to do to get past it and get home and get healthy. Do I cry when my son gets sad because he misses mommy, yes. That's why when I am home and healthy or feeling well I make every moment I can remembered and special for us. My worst fear when he was a baby was that I wouldn't live long enough for him to remember me. Did I believe I was dying anytime soon, no, but I still had those thoughts, I think because growing up I was told I wouldn't live as long as I have. As he's gotten older I know he will remember, and what I want him to remember is the times I was home and healthy, and our family vacations, and all the good stuff. Not the nights he cry's because I'm in the hospital. Living my life to the best of my ability is all I can do for him and for me. And if I miss a treatment every once in a while because we are out having fun well then so be it, I'd rather him remember that moment we were having then remember that we had to stop for a treatment. Some would argue that missing a treatment could take me away sooner, and would defeat the purpose of enjoying my days with him. To them I say, being alive isn't always living.

Not sure if I followed the "rules" but I went where my heart felt.

Sunday, July 24, 2011

CF Sucks!

For those of you who are my friends on facebook the first 2 updates are from there and you probably already know this information. But the last part is new.

After my bronc-scope yesterday I went home and was having pain all around my chest and back, I figured it was from coughing so much after the scope. They gave me ibuprofen before I left, I went home and went to bed. I woke up and all the pain had went away except in my chest on the left side. It was excruciating pain, I couldn't breath in good because it hurt so bad, so I had to take small shallow breaths, which made my O2 levels drop. By the time I got to the ER my temp was 103.1, my heart rate was 150 (normal range 60-100), and I don't know what my blood pressure was but that was high too, my O2 level was 88, my normal is around 95 and my white blood count was 30,000 twice the normal range. The speculation was that maybe my left lung had collapsed, fortunately it was not. Ultimately it was a combination of the bronc-scope irritating my lungs and already being on the verge of infection. So they have put me on 2 IV antibiotics and one inhaled anti-biotic. I am going to be here until they get the final results back from my scope, which could be a couples weeks at least. Today I feel better then last night, but I'm still having pain, that's mostly being controlled right now. My breathing and O2 levels are back to normal, as well as my blood pressure and heart rate. They did the echo cardiogram this morning to check for pulmonary hypertension, the results from that will be in later this afternoon. I'm also having a port placed either later today or tomorrow, which is a semi- permanent central line for IV meds, it takes the place of having PICC lines placed every time I come in. The veins in my arms are no longer able to handle PICC lines.

I was hoping I would have got my PORT placed today, but because my blood count is still high they won't place one because of risk of infection. They also have to have negative blood cultures for 48 hours, I had them done Wed night so they won't be done until tonight and they can't do the PORT until Monday morning. Last night my normal IV went bad, it was the second one I had went through. And after 3 different people tried in 3 different places, they could not get a new one started, so I missed my IV antibiotics last night and this morning, only getting the inhaled one, which today the doctor took me off of one of the IV antibiotics anyways. So I'm on 1 IV med and 1 inhaled for now until they get my final cultures back from the Bronc. So because I can't go until Monday without my meds, they had to place (or try to) a PICC line. It was the worst experience I have had with getting a PICC placed! It ended up only being a mid-line, which only goes up to my shoulder. But it hurt so bad, I don't think the doctor gave me enough lidocaine at the site because I could feel most of the poking and prodding he was doing. I was in tears by the end and my arm hurt so bad I couldn't move it and is still is sore, 2 hours later. So the plan now is for my PORT to be placed Monday morning as long as my blood cultures come back clean.

I am feeling much better then I did on Wednesday, Thursday, or Friday. I have no pain in my chest anymore, and all of my vitals are back to normal. Other then I'm still on O2 most the time, only off for short period of times. Normal O2 saturation's should be between 90 and 100, 90 is on the low side and when I'm off the O2 mine stay right at about 90 or 91, my normal is between 94-96. I'm scheduled to get my PORT in the morning so can't have any thing to eat or drink after midnight tonight. The plan is still for me to stay here until the results come back from my washes the doctor took during my bronc, not sure how long that will be yet.

Thursday, July 7, 2011

Update on Clinic

I went to clinic last Wednesday, just haven't had a chance to post about it until now. The results were nothing good. My PFT's were down again from 35% to 32%, which is not a lot but I have been steadily declining since April. We have 3 CF doctors in our office, 2 of which I have been seeing since I transitioned to this clinic back in '08, but the other one just came on a few months ago. This was my first visit with her, I like them all very much! I had some extensive cultures sent in when I was there in May, those so far are coming back normal, and by normal I mean only growing the bugs I normally grow. Although they test and grow these for 3 months, so the final report won't be until August. So still no clear reason as to my decline. Dr. Lehman wasn't comfortable doing nothing about the decline and fevers being back, but she didn't think it warranted an admission either. So the plan is oral anti-biotic (Leviquen)for 2 weeks, and return for repeat appointment. She wanted to give a few things a chance to work, 1 being the anti-biotic, 2 my recent increase in exercise and she asked me to add more to it making it 5 days a week, and 3 the recent fix in the house. So I go back next Wednesday, if my numbers are the same I think she will admit me and then they want to do a bronc-scope, where they put a camera down in my lungs and take sample's from deep down in. This is pretty much the last test that could give me any sort of answer as to why the decline, if it shows nothing unusual then I think I will be at a place where I have to accept it as disease progression. It's a hard pill to swallow, and I am not willing to accept that is true until all options are exhausted. I have always and always will do everything in my power to fight this.

Tuesday, June 28, 2011

Is my house making me sick?

There was some question as to whether my recent illness's were do to an environmental factor. Mainly my house. Everyone's first speculation is my dog's, this is not the cause I can pretty much be certain of that. I developed a reaction to cats when I was about 8, it was very sudden and it was clear that was the cause. That's how I know it's not my dog's, and to be honest I get irritated when someone suggest that it is, silly maybe, but my dog's are a part of my family and it feels as if they were accusing a family member of wrong doing. Wow, that sounds ridiculous when I typed it out, but that's how I feel so whatever, I guess I sound ridiculous! My first thought was there could be mold in my house causing me to be sick. In our master bathroom there was water damage in front of the shower from a leaky shower door, the floor was rotted and Brad had put his foot through it so there was a hole with rotted floor and not to mention the bathroom had carpet. Where you have rotted wood and moisture, you most likely have some sort of mold and mildew. It's been like that for a long time and should have been fixed. I don't primarily use that bathroom only at night to tinkle, Brad uses it, and I share the other bathroom with Colton. Well when I was clinic last month we had talked about all the factors and just trying to pin point a reason for my recent worsening in health. Environment was one question, and I brought the bathroom situation up to the doctor (BTW he agrees with me about the dog's very slim possibility). I never thought it was a cause, because it's been like that and I've lived here for 6 years. Then we went on vacation for 4 days and stayed in a hotel, I felt great the whole time. We came home and by that night my chest felt tight, and I started having lung pain. That's when I said okay maybe it is something in my house. I called my insurance company to get a recommendation for someone to inspect and fix it, it was not covered under my policy so they weren't able to cover any of the cost. I called the guy and he came out and said that there was not the toxic mold everyone thinks and hears about, but there was some mold, it wouldn't probably bother the average person but very well could irritate someone with allergies or lung issues. So we hired him to get rid of the mold and fix the floor, we were originally gonna just have him fix it and then Brad was going to put the new laminate wood floor down. But then Brad decided he didn't really want to do it because you have to take the toilet out and he'd never done that before. And this gentlemen is a jack of trades kind of guy, so we hired him to finish the floor too. I painted the walls last night so it would be done before the new floor went in. The color is called smoky blue, it's a darker blue, and I really like the way it turned out. He's finishing the floor now and it already looks really good. So I guess if it was causing me any health problems it won't anymore.

Saturday, June 25, 2011

Great Vacations = Great Memories Part 4 the final one!

So waking up Friday morning on June 10th, ready for our final day in the great Northern Michigan. Now I'm thinking how I'm going to go about getting ready doing my therapy and packing up, deciding whether I would do my therapy first pack that up, and then get ready or get myself all ready go eat breakfast and do my therapy and head out. Well I have to admit in the midst of all this packing and deciding, I forgot to tell Brad Happy Birthday. Now I did not forget it was his Birthday, it was the last thing on my mind before I went to bed and the first thing when I got up, but then my brain started working overtime on the days events and it slipped my mind. His phone kept going off and it was bugging me, and I said "Who keeps texting you?" and he said "It's my facebook, you know for my birthday, did you forget!?" And then I felt horrible and got slack for it the rest of the day from him and Colton, I deserved it I guess. We got ready, ate breakfast, and I did my therapy last. Packed up, checked out, and headed out to the first thing on our list to do before we headed home.

The Mackinac Ice Breaker Museum. She was the great Ice breaker of her century. Measuring 290 feet long the Mackinac was built in Toledo, Ohio and commissioned in December, 1944 and decommissioned June 10, 2006. We just happen to be there on June 10th, 2011, 5 years after it was decommissioned, I thought that was neat. It is a really cool tour they give you with a retired Coast guard member giving you all the neat info about the ship and her history. Very well done, kid friendly, not boring at all.

We next headed to Old Mackinaw Point Light House. There is also a fog station right next to the lighthouse. The fog station was actually built first in 1890, then the lighthouse was funded and built in 1892. The lighthouse was used for 65 years, but was deactivated after the completion of the Mackinac Bridge in 1957. There was no use for the light anymore because the bridge has lights on it at night. It's all a museum now, the fog house is a gift shop and entry for the light house tours, the barn/garage has a map and a short video about shipwrecks in the straits of Mackinac and the keepers house and light house tour are set up with the things and furniture they would have with fascinating information everywhere! You also can climb 62 steps up into the lighthouse to see from the top where the light lens would be (it's on display in the keepers house now). We climbed up it, but I forgot my camera so I have no pictures from there or the inside of the house.

I needed to do some more souvenir shopping so we headed down to Mackinaw Crossings Mall, which is basically a huge stripe mall with lots of interesting stores. I only ended up getting some fudge for my Dad, and some popcorn from the popcorn factory. But we decided to get lunch at one of the Pizza Parlor's before heading home. Lunch was good and we were all ready to take the long drive home, thoroughly exhausted, but also thoroughly pleased with our fun family vacation! Colton was so exhausted, he fell asleep almost before we even got out of town and slept all the way home, 3 plus hours with 2 stops. He woke up just before we turned onto our road.

Tuesday, June 21, 2011

Great Vacations = Great Memories Part 3

Here's a link to part 1&2

I never intended to have a 4 part blog about my vacation, but I guess it just sort of happen that way.

On day 3 the weather forecast was cloudy and chilly in the 50's. So we set off for our day on Mackinac Island. Mackinac Island is only accessible by boat, in fact there is no motorized vehicles allowed on the Island with the exception of 2 cop cars, 2 ambulances, a fire truck, and golf carts that are only allowed on the golf course. The only way to see and travel the Island is on foot, bicycle, and horse. So when I purchased our fairy tickets I bought a package deal that got us to and from the Island, a horse carriage tour of the historic city, and state park, and tickets to get inside Fort Mackinac. One of the main attractions on the Island and in Mackinaw city is FUDGE! There is 12 fudge shops you can visit on the Island and sample all the fudge, YUMMY, but it is almost guaranteed to give you a belly ache!

So we set out on the 2 horse carriage ride through the historic part of the city, up through town past the fort, the Grand Hotel, and up to the carriage house museum. They let you off the carriage to spend as much time as you want in the museum that has all sorts of old carriages and even the hearse carriage they use for Island residents funerals. *FYI-To be buried on the Island you have to have been born there, and lived there for 15 years.* There is also shops, and a butterfly house there. You then get on a 3 horse carriage that hauls 35 people and was specially made in Indiana for Mackinac Island, to your journey through the state park. *FYI- If you pick any flowers or anything in the state park it is against the law and even a dandelion can cost you a $50.00 fine!* You journey on up through and around the park past skull cave, and the cemetery's of the Island, on up to Arch Rock. You get to get out again at Arch Rock for about 10 minutes for pictures and to enjoy the view.

After Arch Rock you go back down to the Fort, and those that want to get out and enjoy Fort Mackinac, after you done you can either catch a carriage ride down or walk to the city, it's all down hill, and only about 1/2 mile. After we toured the Fort (I can't even start telling about all of it or this would be even longer) that's full of great history and done so well even kids enjoy it! We chose to walk back to the city, it was cool the whole day and had warmed up in the 60's by the time we headed to the city for yet another LATE lunch. Finished up some souvenir shopping and headed to our boat launch to catch our 6pm fairy ride. I forgot to mention the ride to the Island was horrible! The stone fly's were really bad up there, the fairy has an upper deck that's outside and lower deck that is inside with windows all around. Well the fly's were everywhere all over the boat, the seats, and on you and if you try to get them off of you they end up squashed with bug guts on you! Not to mention it was COLD! So we got there early to make sure we got on the lower deck! And that was a great ride back, unlike the ride there! It ended up being a wonderful day. We went to the hotel relaxed a bit and then went out for Ice Cream, it was homemade and it was AMAZING! Went to bed exhausted, for the next day we were to head home, and it was Brad's birthday the next day too!

Part 4, the final one, I promise! Coming soon.

Sunday, June 19, 2011

Great Vacations= Great Memories Part 2

Read part one here.

So we had a relaxing night in our hotel the first night. After doing some research on the weather we changed our plans a bit for the next day. We had planned to go to the Island on day 2, and Tahquamenon Falls on day 3. Well the Falls are about an hour and a half from Mackinaw City. The weather was gonna be stormy in Mackinaw, but beautiful up at the falls, so we switched the days. We headed out from Mackinaw City for the drive to the Falls. When we got to the falls it was beautiful as the weather had said it would be, it got up to about 80 degrees. Tahquamenon falls sits back in the woods, and it's a little hike to get back to the river and then you take 94 steps down to get level with the falls. You get right next to the amazingly beautiful falls, so close you can feel the mist coming off of them. You can also go down into what they call the gouge, it's down the river away from the falls, you take about twice as many stairs down so your at river level and can see the falls straight in front of you. We did not go down in the gouge, it's just not worth all the steps for a view that's not that great.

Instead we took the nature trail back to the parking lot, the normal trail is paved and about a 1/2 mile. The nature trail is a beaten path through the woods that's about 1 1/2 miles. It was really quite nice on the nature trail with lots of wild flowers and interesting looking trees. Next on the agenda was Oswald's Bear Ranch, it was about 20 miles down the road. Well here comes the next hiccup. The bridge to the main road was out. If you know anything about Northern Michigan you know that there are main roads and the back roads or side roads are basically 2 tracks. We ended up taking an hour and a half detour down the county roads, which are not 2 tracks, but they are dirt and go every which way but in a straight line! So 20 more miles out of our way and an 1 hour and 1/2 later we made it to the Bear Ranch. We went inside paid to go see the Bears, get out there and no more then 5 minutes later it starts down pouring on us! We had umbrella's so we did get to see the Baby's that were about 4 months old and they were so cute! We also seen the yearlings, and one adult male. They were all beautiful animals. And of course once we got in the car and left it stopped raining! O, the fun of vacations :) We headed back to the hotel, stopping and eating a VERY late lunch. Relaxing the rest of the night in the hotel again with our game plan ready for day 3.

Again this is long so I will add a part 3.

Friday, June 17, 2011

Great Vacations = Great Memories

The Mighty Mac!

So when I posted my last blog I had intended to post about our wonderful vacation, and then that happen with Colton so I had to write about it. So here's my intended blog.

We live in mid Michigan, right near the center of the mite. Northern Michigan has always been a great place to get away, that's where Brad's and my parents took us on vacations as children(separate of course, we never knew each other until we were 20). So I wanted to take Colton on one of those vacations I remember as a child. Much like I have taken him to so many other places I loved as a kid. Now I only went to Mackinac Island once as a girl scout in 4th or 5th grade, never with the family. But we had many trips up north across the Mighty Mackinac Bridge, to many different places in the Upper Peninsula. We had intended on getting an early start around 8 am Tuesday morning, well we did not get out of bed until 8 am! Mind you we had little to nothing packed to go! We took our time getting around after that, I figured it's a vacation take your time don't stress out, everything is still gonna be there when you do get there. So we didn't end up leaving until around 2pm, and had to make a couple stops. Our destination was Mackinaw City which is on the south side of the Mackinac Bridge.

Now for a little history lesson, Mackinaw city chose to use the "aw" in the name of their city to define them as separate from Mackinac Island which along with the Bridge has the "ac" ending. But either way it is spelled it's still pronounced "aw". They say the Mackinac Bridge is 5 miles, but actually it's 20 feet short of 5 miles, most don't know that little fact. It's construction began in 1954 and took 42 months to complete, opening on November 1st, 1957. Total cost was upwards of $100 million, originally only estimated to cost around 70 million.

We arrived at our hotel around 6pm. Now it's about a 3 hour trip from our house, we had a few stops before even hitting the highway. And then for the first hiccup in our trip, we were about a mile from a rest area and I told Brad to stop there well he kicked it in high gear to get around a motorcycle and low and behold a cop was sitting at the bottom of the hill right before the rest area...BUSTED! He knew he was hit so he pulled over immediately, before he even turned on his lights! Told the officer what had happen, told the cop how fast he thought he was going, ended up being 90 MPH in a 70 zone! Brad has a clean record, and the cop was nice enough to only write him for 5 over that way he would keep his clean record, but ended up costing $105.00! Nice added expense to the trip..NOT! I could think of at least 10 things better we could have done with that $$! I still had to pee! So we went to the rest area took a break and stretched the legs, we were about 40 miles from Mackinaw City. We didn't do much the first night, relaxed in our room, went out for supper and took a swim in the pool and hot tub. Oh that was another thing when we checked in the clerk said well your room is actually booked right in a bus group full of kids! So we can upgrade you to a suite for $20 extra a night? Sure why not it's our vacation right?! So once we got to the room it was really nice. Now I want you to remember how many bags I need just for me..4! That's right I have to haul 3 bags plus a travel O2 concentrator. So he tells us after we are all booked and checked in... you go to the elevator take it to the 3rd floor, your on the 4th and the elevator doesn't go up there so you have to take 2 flights of stairs to your room! Seriously? That's exactly what came out of my mouth! But I didn't want to mess around, and Brad's a big guy I figured we only got to haul it up once and down once 4 days later, we could deal. Not realizing the stair way and halls past the 3rd floor were not air conditioned, it was 80 degrees that day! We were pretty sweaty once we got there, and the room was hot at first but the air worked good and cooled it pretty fast. But it was a really nice room! 2 room suite with a jacuzzi in the bathroom, and a nice balcony. The hotel over all was really great, had a wonderful full bar breakfast, pool, hot tub, gym, and private beach.

Oops, too many bubbles in the Jacuzzi!

This is longer then I intended so I think I'll stop here and do a part 2 over the weekend sometime :) Tune back in for the other 3 days of our vacation with more "hiccups"!

Monday, June 13, 2011

Seven year old's shouldn't have to worry..

To say Colton is a special kid is an understatement. And I'm not just saying that because he's my son. Other people recognize this in him as well, always being referred to as a little man, smart and wise beyond his years. I have always believed God created Colton tailor made for me, he is a great sleeper always has been, this is a child who never climbed out of his crib let alone on top of things, and to be completely honest he still cannot climb that great! He's just the right pace for me, he went through stages as a toddler where I struggled to keep up, but other then that he is a great kid for me. He is so slow paced in fact it gets him in trouble sometimes at school, and with us. Known nick names for Colton include pokey, slow poke, turtle, and Eeyore. Colton's a sit back and watch kinda kid, let's see what happens then maybe I will join in. Most kids his age enjoy super hero's, baseball and car's, Colton on the other hand enjoys antiques, vacuums, watches, marbles, and radio's. Colton has always been aware of my disease, I have never kept it from him, always been completely honest in an age appropriate way. And every hospital stay has been hard on him, but I think the fact that they were mostly around a year apart he has recovered from them and been able to not worry and get back to being a kid with no worries, except whether or not I'd let him have oreo's for breakfast (some morning's I do). Well it has become painfully obvious my recent continued illness's is taking it's toll on him. I have noticed he has been more clingy to me, not wanting to stay nights away, while I was napping at Mom's she said he was checking up on me. He tells me he loves and hugs me at least 20 times a day. And our usual bedtime routine includes more I love you's, hugs and kisses. Tonight was a usual night until I hugged him. I gave him the usual hug, kiss and said good night. I turned around to leave and he said "Can I have another hug, because I could really use one" I of course said yes and went back to hug him and when I did he squeezed me really tight and said "I love you so much" and started to cry. I said "I love you too buddy, why are you crying?" Through his tears and sobs he said "It's hard to explain" I said "You just love me so much" him "yes, I just worry about you sometimes" And chocking back tears myself, I did my best to reassure him I will be fine and he shouldn't worry about me, that it was my job to worry about him, and put him to bed for the night. Then I came to the living room and cried like a baby. Seven year old's shouldn't have to worry....

Colton and I at Tahquamenon Falls, Newberry MI on our vacation

Sunday, May 29, 2011

Update and Great Strides 2011!

Well after having a relapse in the hospital, I got out on Friday the 13th with plans to do 2 more weeks until I went to clinic and then they would decide if I needed it longer or not. Had some issues with my PICC leaking at the entry site, I think due to the fact that they could only make it a mid-line, and the hole where they put it was huge due to messing with it so much to try and get it all the way up my arm to my heart. It's still leaked on and off, but still works so I'm keeping it to finish my meds, which is Tuesday. When I went to clinic my numbers were not good, 38% FEV1, my baseline is 47% and I was almost to that when I was released from the hospital on April 18th. Not really sure why I had a sudden onset of illness so soon after feeling so good only 2 weeks before. The doctor is going to do more extensive testing on my culture's, told me to get rid of feathered pillows I have on my couch, and consider leaving my home for a while to see if it's something environmental, I don't think it is since nothing has changed in my environment. If my cultures come back normal then he wants a bronchial scope, I have had 2 of these in the past so I know what it's like. We also decided that the next time I need anti-biotics (hopefully not for a LONG time) I will have another Port put in, you can read about my last port here. I go back to clinic June 29th, he said all my cultures, will be back then, and we'll go from there. Hopefully at that time my numbers will be up I will feel great and there will be no need for any more test at all!

Moving on! We had our local Great Strides walk that I coordinate and run on May 22nd! This is our 3rd year doing the walk in my town. We live in a very small town rural area. So I was pleasantly surprised when we raised $10,000.00!! This is a great amount considering the size and the economic hit on our town. It was a beautiful day! We had a silent auction that almost didn't happen, but my amazing friend Kallie put it together for me within days of the walk! I had also organized tables for purple nail polish (our awareness color), temporary tattoo's, face painting and blue and yellow helium balloons all for 0.50 donations! We did a balloon release right before we started our walk in honor and in memory of those with CF or who have lost their battle. It was overall a great turn out with about 150 people! We had hotdogs and chips afterward. I love doing this walk every year and the fact that it is so successful makes me very proud. I am working on planning a Motorcycle/Hot Rod poker run for September, so if anyone can help with that or has some good idea's let me know.

Wednesday, May 11, 2011

This is why I FIGHT so hard, and WORK so hard to raise money for a cure!

I wanted to take this opportunity to talk about how fast CF can change in a person and how fast we with CF can get sick and sometimes things go bad fast. I'm not trying to scare people, I just want everyone to know that this disease is unpredictable and deadly.

As most of you know who will read this, I was just in the hospital in April, in fact I have only been off IV's for 2 weeks. And before that I was just in 4 months before in December. That is very uncommon for me, I usually go about a year between hospitalizations. In December I never felt like I got to my "base line" of feeling better. But In April I did, I felt great when I finished my meds. All that changed on Mothers day, I felt tired all day and just didn't feel that great. With my CF some day's I just don't feel good, there's no particular thing that don't feel good or symptom the only way to describe it is I just don't feel good, sometimes it's hard for "healthy" people to understand that, they seem to want to know what's wrong and what don't feel good, and I just can't explain it. So that's how I felt Mother's day and thought after my therapy's and a good night's sleep I would feel better. I had Brad get up with Colton Monday so I could sleep in, and I did I slept great the whole night didn't get up until around 11:30, probably sleeping close to 12 hours. Monday I just still didn't feel good, I seemed to still be tired, and was in and out on the couch most the day. Only really awake to do my therapy and eat when I was hungry ( which wasn't much). And then around 4:00pm I had a coughing fit, it caused me to have severe chest pain and I couldn't control my breathing. Now if you have seen me have a coughing fit, it's quite scary for other people, they think I am chocking and can't breathe and really have no idea what to do. I am normally fine after these fit's and once they are over I catch my breath and go on with my life, and assure anyone's that is freaked that I'm fine. Well after that fit Monday afternoon I couldn't get my breathing normal, so I did my rescue inhaler, that helped some and because Colton was home and I didn't want to freak him out I stayed calm and managed after a while to get my breathing under control, but I was still struggling and my chest still hurt really bad. I did not want to go in, it sounds stupid, but this has happened to me before, I have all these bad symptoms go in to ER they do blood, x-ray, all that jazz and nothing is abnormal and send me home, after a wasted 8 hour trip to ER. The only reason I did was because last time I went to clinic and he put me in I had not had such a great weekend and he was upset I didn't go in and told me please just go in next time. So I did. By the time I went in my breathing was better, until I would start coughing, which is a lot. And my chest still hurt. I still honestly thought they'd do the usual, and send me home with pain meds for my chest. Well they did the usual and it did show sickness, high blood count, my chest x-ray according to the one they had prior was worse so they thought I had pneumonia. The ER doctor said he wanted to admit me there, well I don't do anything of that sort without talking to my pulmonary doctor or at least the one that is on call, so I gave him the number and they said to transfer me down here to GR, I normally go to Butterworth but they were full so I am at Blogett, I was worried about coming some place new but they have been great here and am very happy with my care. Right now I am back on the anti-biotics I was on a couple weeks ago, and don't really know when I will be going home. I feel better then Sunday or Monday and Tuesday I was just exhausted from the night at ER and not getting transferred until around 3am.

I want to clarify my point, things happen so fast and could have been much worse. I could have collapsed my lung, or had a lung bleed from coughing, I know of these things and more that have happened to fellow CF'ers. These things are serious and can cause death. So many time's people with CF have died and people will say "I just seen them and I thought they were doing well". That's how fast this disease can change and take peoples life's. Every time I go in the hospital I am thinking about this, and thinking about everything I need to do to try and prevent that from happening. And don't think that it can be prevented because it can't, we do these thing's IV's, chest therapy, exercise, and rest to try and heal and not let the infection's take over, but for some sometimes these things are not enough and their lungs fail. Like I said I don't mean to scare but it's important to me people understand.
This is why we need a cure and to find a cure we need money for research! That's why I do my Great Strides walk every year and work so hard to raise money for CF, I don't do it for myself but for all the people with CF around the country and world. For the children that are still being diagnosed everyday with this disease, for those that are losing their life right now to this disease. For little Aleeya Chaney who's spirit is amazing, so she can live above and beyond what is predicted for her. I don't do it just for me, there's a whole world and community of CF'ers that need it too. So do something to help, raise money, join a walk team anywhere they are all over the country and states! Give up that pack of cigarettes or that $5.00 latte and give that money to CF! Every little bit helps and that's the truth. go now!

Sunday, April 17, 2011

Most Days

Most day's I'm ok, I'm strong and independent and for moments at a time even forget I have CF. Today is not one of those days, nor have I had one of those in the past week. I feel sad, lost, home sick, lonely and mad, because I do have CF. I hate days like today. This hospital stay has been one of the hardest, I missed things that were important to me, more then any other stay. Colton's spring break, my best friend having her first baby, and an Easter Egg hunt with Colton. And I think what has made it even harder is I was just here in December, 4 months ago, I have never been back in the hospital in just 4 months. It makes me feel like some sort of failure. If I had just not missed that treatment, or just added one more to my day, it's only 30 minutes or if I would just start exercising like I say every time I'm going to do. I know it's just the way CF works that I probably could have done everything right and I would still be here, but today I don't feel that way. Today I feel sorry for myself, a feeling I hate. And I feel bad because when I talked to my Mom on the phone and told her how I was feeling, trying to make myself feel better, I made her sad too. I'm sorry Mom, I love you, don't feel bad or sad. I'll be better tomorrow I'm sure.

Thursday, April 7, 2011

Miscommunication can be dangerous

I have restless leg syndrome, I've been taking meds for it for probably 4 or 5 years. I started taking requip for it and it quit working recently and I switched to mirapex. Well when I came in the hospital they still had requip in the computer on my list of meds. I told them I had recently switched but was unsure of the dose, so I called Brad and I thought he told me 2.5mg. I told them and just to be sure the pharmacist on the floor came and asked me for my local pharmacy's number so she could double check the prescription dose. So when my nurse came in last night with my meds she had the Mirapex and said I took 2.5, but because it didn't come in that dose in 1 pill, I had to take 10. I thought this was strange but because they looked different then the ones I have at home, and I was sure the pharmacist called to double check, I took them.

I woke up around 3am really hot, nauseous, and had to pee. I got up unplugged my IV poll and stood up to go to the bathroom, I immediately felt lite headed and dizzy, so I sat on the couch that's next to my bed. The next thing I remember I was lying on the floor, and my knee hurt. I had passed out and fell on the floor hitting my knee somehow. As soon as I woke up, I started throwing up, luckily there was a trash can right there and I made it in there. I managed to find my nurse button and called the nurse, she asked me questions to make sure I didn't hit my head, and I thankfully didn't. She helped me go pee and I got back in bed, I was still really dizzy, light headed, and nauseous. They took my vitals and hooked up a blood pressure cuff for the rest of the night to monitor it.

So after talking to Brad this morning I apparently heard him wrong, and it was suppose to be 0.25mg, I took 10 times the amount I needed! But how did they not catch it when they called the pharmacy? Well apparently they did, and the doctor wrote it wrong on the notes in my chart, so the nurse read that dose as well. I normally know my meds really well and the doses but I had just started this one and wasn't sure. It was from a huge mis-communication.

Today I feel like I got wasted last night! I feel sick to my stomach, can't eat much, and want to sleep all day. They said there wouldn't be any adverse effects once it was out of my system, because that dose is giving to some people, I was just not tapered up to that much, like someone who would need that much. Hopefully tomorrow I will be back to normal.

Wednesday, April 6, 2011

CF Defeats me........not quite!

I seem to only blog when stuff happens with my health. I don't know why this is other than when I'm in the hospital I have time on my hands. I use to keep a journal on a pretty regular basis, not so much anymore. So my blog is kinda like my journal now. And just like my journal I tend to write more about my health.

I went in to clinic last Wednesday, had PFT's and seen the doctor, my PFT's were 13% decreased from the beginning of February, from 47% to 34%. So the doctor says I need to go in the hospital. I told him I would like to wait until after the weekend, because my best friend Chasta's baby shower was on Sunday. So he agreed and put me on an oral anti-biotic, until I could get in Monday.

Sunday despite nasty Michigan weather, Chasta's shower was a success. Chasta had been "leaking" what she thought was tinkling of pee. But because she wasn't sure it was pee and could have been amniotic fluid, we told her she should get it checked just in case. So she had an appointment at 1 and I was waiting to hear if I had a hospital bed and if my best friend was going to have her baby, 4 weeks early.

Chasta called and said that her water had broke and she was going to have her baby girl. I was frantic and desperate to find a way to stay home one more day, just one more day was all I wanted. I talked to the nurse at my clinic and she said that, the oral med I was on from Wednesday until then my bugs were not even sensitive to and it was important that I get in and get the IV's my body needed before more damage was done. I was devastated to say the least.

Let me clarify the meaning of mine and Chasta's friendship. It's more then that, we are more like sisters. We spend probably at least 2 days a week together, we shop, we bowl on a league together, we see movies, go to dinner, and our husbands are best friends/brothers too. She supports me in so many ways! We complain about our husbands to each other. When I found out I had to come in on Wednesday I wanted to cry, and she found the right thing to say to make me feel better, I would say I'm the emotional one and she's the logical one, I'm the assertive one and she's passive. We complement each other in so many ways.

So have been anxiously waiting for her and Ben to have kids, and when she got pregnant I couldn't have been more excited! When she found out she was having a girl I was so happy for her but jealous too because I always wanted a daughter, but my joy definitely out weighed my jealousy. We have been shopping and preparing for her shower together, eagerly waiting for her arrival. Never guessing this would happen.

I cried the whole day almost. Awaited updates as I was settling in my own hospital room. I was inconsolable, I was worried about Chasta because being the planner and control freak she is, I knew she was completely freaking out and worried about having her early. I got a text at around 5:30 Tuesday morning, Izabella June Langworthy had arrived at 4:14, 6lbs 2oz, and 19 1/2 inches long. She was completely healthy and Chasta was doing great as well. I was so happy for her and Ben. And then I cried the rest of the morning because I was not going to be able to see her or hold her for at least 2 weeks. But we have skype and so I got to see her via skype around 6:30 that morning. She's absolutely perfect as you can see in the picture!

I am most generally a very happy positive person and don't let much get me down. But this has been really hard for me. I despise CF at times like this. Not that I particular like it at anytime, but most the time I can deal with what it throws my way. This time I feel like it defeated me.....for a few days anyways. I will fight like always, and getting better and healthy to get home to see Colton and my Izzy girl will be my drive.