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.

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.

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.

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"!

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

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.

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.


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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. www.cff.org/greatstrides go now!