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!

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.

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.

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.