first week of running program

well I completed my first week of the running program. I was able to get in four works out so far since monday. Hopefully Sunday I will get one more in, although I am going to a wedding (on halloween, I am super excited) tonight and staying over night downtown, so I probably won't feel much to working out. I find on the days that I do work out though my face is less puffy (it's puffy from the prednisone). I guess working out distributes the water weight or something. Just one more reason to keep at the exercise. My oxygen levels are doing really well too, 95 and 96 resting. woo. I've noticed so many improvements over the last four months of working out. Now instead of it being a rarity if I did work one day, now a days it's the opposite and it's extremely weird and rare if I DON'T work out on a day.

I was able to up my running from the original 1 minute run at 4.0mph, incline of 2.5, then walk 5 fast at 3.4mph incline of 2.5, repeat 4 times, to running for 1 minute and 15 seconds...I know it may not seem like a huge increase to some, but believe me, when your running on 1/5th of the normal person's lung function, running is a huge deal...and that extra 15 seconds is such a struggle, gasping, but I keep going, and pushing myself. I don't think I'll be able to do 2 minutes by next week, like the program calls for, but hopefully by the end of next week I'll be able to increase it to 1 minute and 30 seconds.
I'm just doing a mask, then I have to pack for the wedding tonight. It's a masquerade themed wedding/dress up in costume if you like. I'm going as a woman from the 1940's/50's. I have a vintage fur stole, vintage dress, and hat, and brown long gloves. It should be so fun. Happy Halloween everyone!

running? me? i'll give it a whirl...

So yesterday I started a simliar running/exercise program to run sick boy run. this was his work out regime three months ago and now he is able to run for 30 minutes and he just started out running 1 minute. incredible.
I don't think I'll be able to do it as fast as him, due to my lung function being much much less then his, but I'm working on it. Yesterday I did the one minute running. I was not able to do that four months ago. Today I will run for one minute increments again with an incline of 2.5. I never do flat surfaces anymore. Hopefully I'll be able to get up to 10 minutes of running in the next few months. We shall see! Wish me luck.

Mon	Tues	Wed	Thurs	Friday	Sat. or Sun.
Week 1	Walk 6 min., run 1 min. Repeat 3 times (total 21 min.)		Repeat Monday's workout		Repeat Monday's workout
Week 2	Walk 5 min., run 2 min. Repeat 4 times (total 28 min.)		Repeat Monday's workout		Repeat Monday's workout
Week 3	Walk 3 min., run 4 min. Repeat 4 times (total 28 min.)		Repeat Monday's workout		Repeat Monday's workout	Repeat Monday's workout
Week 4	Walk 2 min., run 5 min. Repeat 4 times (total 28 min.)		Repeat Monday's workout		Repeat Monday's workout	Repeat Monday's workout
Week 5	Walk 2 min., run 8 min. Repeat 3 times (total 30 min.)		Repeat Monday's workout		Repeat Monday's workout	Repeat Monday's workout
Week 6	Walk 2 min., run 9 min. Repeat 3 times (total 33 min.)		Repeat Monday's workout		Repeat Monday's workout	Repeat Monday's workout
Week 7	Walk 1 min., run 11 min. Repeat 3 times (total 36 min.)		Repeat Monday's workout		Repeat Monday's workout	Repeat Monday's workout
Week 8	Walk 5 min., run 20 min., walk 5 min. (total 30 min.)		Walk 5 min., run 23 min., walk 5 min. (total 33 min.)		Walk 5 min., run 26 min., walk 5 min. (total 36 min.)	Walk 5 min., run 30 min., walk 5 min. (total 40 min.)

no more oxygen nasal prongs. check this out.

sooo is this less obtrusive then nasal prongs??
Will I look like I'm talking on a head set instead? I think I'll use this in New York, and find some sort of way to stick the tubing down...It's easy to pull off when I go into stores or we stop walking. I just really need it for the long walks in NYC. At least I'll still be getting my exercise in when we go! Also I'll be able to use this on the beach in barbados, little less inconspicuous then the nasal prongs?? Juries still out. I still have to test it out on the treadmill and see if it actually works with walking.

Stable. How much do we really know about our food?

I had clinic on Tuesday and I am completely stable. My numbers are still at 0.81 liters. I was able to stop the oral antibiotics. My weight is at 118, the perfect weight I think for a CF'er at just 5'4 feet tall.
They kept my picc line in, but it's just a safety measure, they are going to wait to pull it right before Barbados. That will be a good week, picc line out, sun, sand and surf. I cannot wait.
Also I have decided I'm getting the H1N1 vaccine. My doctor explained it to me...and now I am on board. I think the risks of not getting it, out weight the risks of getting it. It was made just like the normal flu vaccine, and it seems just the media hyping it up. I don't think it will be available to take though till the end of November, So i will have to wait until I get back from Barbados in December to get it. I'm sticking with my exercise routine. It feels wonderful. I really think that is what has helped me these past few months stay so stable week after week. Also I started symbicourt to help combat the asthma. Hopefully that will help with the short of breath, and the asthma morning coughing fits, and the whistling cough!

How much do we really know about our food?
I also saw Food INC last night. Definitly a must see. I am changing my eating habits pronto. I have already found though since I've been working out these past few months, my body has kind of been telling me, don't eat that processed salami or sausages, or fast food. My body seems to only be craving good food, which is fine by me!
Food INC was really good though, all about the food we're eating and how consumers are totally left in the dark. It wasn't gory or anything, like some of the documentry out there. I went away not wanting to become a vegan or anything, but wanting to eat free range and non antibitoic meat. There was one farmer who factory farmed chickens in the documentry and who is now allergic to all antibitoics. ummm no thanks, definitly don't need that. So we're goign to start buying free range meat with as minimal anitbiotic useage as possible.
check out the trailer!


are you on oxygen??

Hey CF bloggers, I have found this new thing to instead of the oxygen nasal prongs to wear out and about town. I have not tried it yet, I just got it on Tuesday and I haven't had time to take a photo of it. I just tried to google it, but cannot seem to find a picture of it. I will post one as soon as I borrow my boyfriends camera, probably tomorrow evening.
Basically though it looks like you are wearing a headset and talking on the phone. It is incredible. I only require oxygen when I work out or walk long long distances. I am goign to NYC in 14 days and wanted to bring my oxygen there so I could keep up with the group, since there is a LOT of walking and I want to save my money on cabs ( I just looked at my mastercard bill this month...yikes!) so I was all set to bring my regular old nasal prongs, but then a respiraologist technician suggested this head gear type deal. It looks like I'm just a business woman talking on the phone...you can just call me holly wood. no big deal. haha

It's interesting how it works, basically you put the "mouth piece" near your mouth and the oxygen is suppose to create like a mushroom type cloud when it comes out of the piece to go over your nose and mouth when you breathe in. It won't work for everyone, but becuase I don't need very much oxygen when I walk long distances, I think it will do the trick for me while I'm in NYC.

Also I was fretting about how I was going to keep up with my exercise program while I'm in Barbados for 12 days, but I totally feel comferable wearing this head set out on the beach for a power hike for my exercise. I'll have to post photos of it, so you can get the full effect of it, and then maybe for all of you guys out there on oxygen can give this a whirl, because sometimes the nasal prongs are sore after awhile!

i LOVE halloween.

i love halloween. it is my favourite time of year. I carved pumpkins with my dearest friend tonight. They are such good ones!Here are the pumpkins we carved! sooo much fun! we also watched little woman while doing it. such a classic. I wish we still were able to dress like that. Those big dresses and bows.
I'm going to make pumpkin people over the weekend too! I'll post pictures of those guys soon.

the perks of having diabetes....also calling all CF'ers

so here is one positive aspect of having cystic fibrosis related diabetes, it allows me to know when I have an infection, even before I have the usual CF symptoms (short of breath, dark mucus, increased cough, feeling lathargic). Diabetes, blood sugars, if they're low and in normal range, allowing me to take less insulin, and waking up fasting at low numbers, also tells me when my infection has cleared, without needing a blood test to know that my white blood cell count is better.
Ladies and gentlemen, my blood sugars are incredibly normal in months! It's great, I'm waking up at 5.1mmol fasting in the morning, AND get this, I don't even need insulin for my breakfast! It is great. I haven't been able to eat breakfast without insulin since...July? One less needle poke! hey I'll take the breaks where I can get them! Small victories are the key. Seems like these orals have really helped....oh also other good news, I was able to squeeze in three works out last week despite being super busy. My oxygen levels have gotten up to 96 resting! (woah huge news, have not been that since February?) pays to keep working out!

Attention fellow CF'ers

now here's the problem, which i'm posing to all other CF'ers out there....I am having the worst time with my asthmatic componant. I have a dry whistly cough. I am sometimes short of breath, which I attribute to the asthma. I have already upped my pulmicort to the maximum (4 puffs morning and night, and 2 in the afternoon) I really want to keep decreasing my prednisone, which is probably why I am having the increased symptoms of asthma since prednisone helps with that...but I was just wondering is there anything that you guys use, any other puffers, or even natural things to help with asthma??? It is sooo annoying now that I have this infection under control, only to have to combat inflammed airways because of asthma. You would think asthma would be cured by now...it seems so silly.

Anyways so if anyone has an suggestions, pllleeease comment on my blog. I am in desperate need, and am going to clinic tomorrow and am writing down a list of possible puffers/drugs to go on for asthma so I can keep decreasing this awful prednisone.

Things I am Thankful for.

First off I am extremly thankful for my family. My cousins, My aunts and Uncles, My brothers, My mom and Dad, My Grandmas and my Boyfriend. They are my heart and soul and are with me through so much (like today doing a photo shoot, thanks soooo much girls, really appreciate it!)

I am incredibly thankful that I am growing up in the 21st century, for it allows me to connect through the world wide web with friends who I never would have gotten a chance to know (Laby j'adore!) It allows me to read other cystas and firbos blogs and learn and share and educate.

I am incredibly grateful that I can still get on the treadmill and FEEL like working out. I am thankful that it has been three and half months of exercising and I have not quit! I want to do more! (Help me think of a six month anniversary thing to do!)

I am thankful that today when I put on my oximeter (a finger machine that reads my oxygen levels, anything above 90 you don't need oxygen, 97-99 is normal for the average person on this machine) and this morning at resting it was bouncing around from 93-95! woo. Normally it bounces around from 92-93.

I am thankful for my hands, for they allow me to create my beautiful jewellery.

I am thankful for pets for my cat Beau brings me so much joy into my life.

I am thankful to be alive, to take each breath (no matter how crackly and full of mucus it may be haha) in the morning!

I am thankful that this thanksgiving was wonderful and I got to spend it at the boyfriends cottage....although I am not thankful that it hailed one day...

I am thankful I get to go back to Barbados in November.

I am thankful for hot chocolate on a cold day.

I am SO thankful, that I live in Canada and have access to free health care and wonderful physicians.

I am thankful for fire places and wool sweatres.

I am thankful for just being.

I hope everyone had a great thanksgiving!

4 x work out this week...made it!

so I snuck in my fourth work out of the week. even though it was only for 30 minutes this morning. I still did it! I didn't think I would get it in, because I'm heading up to my boyfriends cottage this weekend for thanksgiving, then back home on sunday for my family's thanksgiving. It feels soo good to have already worked out today. I love morning work outs because not only are the endorphins flowing through me, but I have the whole day to myself now, no dreading getting on the treadmill in the afternoon or evening!

Oxygen levels are pretty constant, back to normal when I work out. I've been having a little bit more short of breath since wednesday, but hopefully that will clear itself up. The oxygen company came for my three month assessment. I also ordered some oxygen for when I go to NYC (less then a month, woo!) and for when I go to Barbados, (less then two months, woo!) She tested me and my oxygen dropped to 78 (below 90 is when you require oxygen, hence when I need it when I work out) when I was doing my 5 minute warm up without the aid of the oxygen concentrator, YIKES. also sorry for some of the typos, my cat is sunning herself under my lamp and cleaning herself while pushing on my arms trying to get into the most comfortable position on my desk. My cat is....well...she's kind of fat, so there isn't much room for my computer, my business stuff, and her all to fit nicely on the desk....but she's trying to anyways.
I hope you all have a wooonderfullll thanksgiving. I cannot wait to eat some mashed potatoes, and PIE. I have the biggest cravings for pie, since I've been on prednisone! Happy thanksgiving and please keep Natalia, a fellow CF'er waiting for a double lung TX in your thoughts, she really really needs those lungs!

The handshake...a neanderthal idea

In this day and age, you think someone would have invented something other then the handshake when greeting someone. It seems so cave manish. With swin flu, colds, bird flu, chicken pox, e-coli, regular flu, other diseases, etc, etc, etc...why shake someones hand to say hello? and what is with the greetings of kissing people on the lips? Who invented these ridiculous rituals? and why have we held on to them until the 21st century...seriously we need to adapt and change. The rest of our society has, why have our greetings not caught up with the 21st century? Why is the wave not more common? I do the wave. I LOVE the wave. The wave is great. haha I try all the time to do just the wave...or try to have my hands busy when I am being introduced to someone, like a drink in hand, and paper in the other or something of similar effect, but you always get those people who insist you shake their hand, even if your hands are completey full, even if you use this line "oh i just washed my hands, their wet, sorry" you always get the one guy who is like "oh thats okay i don't mind, wet handshake me" or the one guy who holds the paper or glass for you so your right hand is free to shake theirs...sigh. take a hint. It is so Neanderthal like...

Today I was listening to my boyfriends ipod and a song came on by a rapper saying how he'll shake your hand but keeps the purrell close by...come on world get with it. stop with the hand shakes, stop spreading these diseases around to everyone...

Perhaps the worst is healthcare workers shaking my hands. Everytime we meet a new respirologist, nurse, tech, or anyone else, they want to shake my hand. I would expect shaking of the hand from a regular joe but from a health care worker, in a hospital where the place is just filling with germs, where they tell you not to even put your purse on the ground for fear of whats on the floor...and then they have the galls to try to shake my hand! I don't think so ladies and gentlemen...I use the ol "oh i dont' shake hands in hospitals...germs, sorry (insert gianormous smile here, so they don't feel offended)"...you'd think health care workers would know...I guess they missed that memo. well that's my Wednesday rant for you!

Also side note, I am going to Barbados. Good warm, glorious, salty air for 12 whole days, with my grandmama, little brother (not so little, he just had his 19th birthday two days ago, BIRTHDAY shout out to him!) and mom. sigh...I cannot wait. Countdown is on kids. Countdown is on lungs. Few more weeks till your breathin' easy old girls. Lungs please just don't get sick on me in the mean time!

For all you friends and family out there, if your sick at all, please please don't come visit our household! It would really really majorly be a bummer to get sick before this vacation...I need a vacation after this 6 month stint of sickness...did you know I've had my picc in for five months...hoy boy. hopefully that comes out in two weeks! but more importantly this vacation is a vacation for my lungs. these girls do way better in warm salty air! so sick people, please stay away! thank you kindly in advance, sincerely H and her lovely lovable lungs.

Positive vibes and energetic thoughts please for natalia

I want to send out all the positive thoughts and vibes I can muster up to Natalia. She is a fellow CF'er check out her blog by clicking here. She has a few month old baby daughter, a wonderful husband, and she is waiting for a double lung transplant at Toronto General Hospital. Last week she found out she was retaining CO2...which means, when your retaining Carbon Dioxide, it is the hallmark of type II or final respiratory failure...please think of her and send out vibes that she gets her lungs soon. very very very soon.

Sometimes life isn't fair on what it throws at us...someone a few months ago said to me that it was not fair that all the good people seem to have all the bad things happen to them (meaning me having cystic fibrosis)...maybe it's because all the good people are the only ones that can handle the bad things...
If someone who was already rotten were to be handed a chronic illness or progressive terminal disease, I don't think they would fare too well. It takes a strong mind and stronger attitude to get through the cards we have been dealt.

I think perhaps bad things happen to good people because it's meant to teach others something...one of my closest friends passed away when I was 19 from cancer. I think her having cancer was meant to teach everyone around her something...I think me having cystic fibrosis is meant to teach the people I know something...maybe it's just a simple thing, like maybe a boy I once knew in high school now has signed his organ donor card because he knew me, or maybe it's a girlfriend I met in university and maybe she saw how I struggled with the little things in life, like climbing a flight of stairs to my apartment and maybe now she no longer takes for granted that she didn't get an A+ on her paper because she knows now that she CAN climb a flight of stairs and go dancing...maybe it taught someone else that I have encountered not to sweat the small stuff...that life is a gift and it shouldn't be wasted. I like to think that me having this disease has a purpose you know? Like it's meant to teach others, and even myself that Life is too short. So enjoy the things you love, spend it with the people you love, laugh often and live. Don't worry about the future...it'll come, whether you sit and chew your nails about it, or not. Who knows what comes after this life....if this is the only one we got, make the most of it. Live, take a deep breath each morning and be thankful that you can take that breath....after all if life gives you lemons...you just have to make some wildjumbleberry juice.

Breathing Easierrrrr

Yesterday I worked out for 35 minutes, better then Saturday,which was only 30 minutes, and I felt like I was going to throw up half the time from breathing so hard, but today I was able to work out for 40 minutes which was better then yesterday, still had to stop a few times to catch my breath, but my oxygen needs were decreased as well, so all in all better! I'm workin' my way back up, slowly but surely. It seems to take about a week for the decrease in prednisone to wear off, by Thursday I should be tickled pink perfect again.

For my work out regime now I have decided to switch it up, so before I dropped prednisone and starting again today, this is my routine 2.8mph 5 minute warm up at incline of 2.5 oxygen about 3 liters of oxygen. 3.8mph at incline of 2.5 for 10 minutes with oxygen needs 4-6,7 liters. 3.4mph for 5 minutes at incline of 7, oxygen needs 7-8 (on a bad day, last week before prednisone drop i could get away with only 7 liters) then I do 10 more minutes of 3.4 at incline of 2.5 and then a 10 minute cool down all adding up to 40 minutes. I've already done two work outs this week, and it's only Tuesday! I was not going to even work out today...but then I got a text at 10:30 from my cysta saying her lung function and weight was up at clinic (yay) and that motivated me to get my butt on the treadmill at 11! thanks girl for the text!

CF Commerical

I came across this video after my cystic sista went to sleep so I was forced to roam the internet solo msn (she's a bit under the weather though, so i will cut her some slack for heading to bed!) whilst i finished off my night mask ...very powerful video.

No I won't give up...no I won't break down... I will be strong even if it all goes wrong....someone's watching over me.

Newspaper Story

I follow RunSickBoyRun Blog "running because my life depends on it". Ronnie is a huge inspiration and is one of the reasons why I keep motivating myself to get on the treadmill each day, even when I don't want to. He was featured in the Arizona Star, and for those of you who don't read his blog, here is the article for your reading pleasure!

Tucson Region

Living energetically with cystic fibrosis

Disease becomes a motivator

Tucsonan helping others while facing loss of insurance

By Stephanie Innes

ARIZONA DAILY STAR

Tucson, Arizona | Published: 10.04.2009

Ronnie Sharpe stares ahead as he runs, his breaths shallow and his pace slow. He sweats heavily and coughs so hard that ribs protrude from his thick torso. Frequently, he spits out mouthfuls of phlegm.

The 29-year-old Tucson native obsessively looks at the sports watch clocking his 30-minute goal. Singer Gavin DeGraw's "Free" plays on his iPod. Sharpe hates to run; he absolutely loathes it. But he forces himself to do it at least three times a week.

Sharpe, a Catalina High School and University of Arizona graduate, has cystic fibrosis — a genetic disease that affects the lungs and digestive system, and kills half of the people who have it by the age of 37. There's no cure, and Sharpe already has lost several friends to the disease.

He's garnered national attention recently, having won a contest sponsored by a vitamin company. The contest, titled "Fuel Your Greatness," asked entrants for inspiring stories. He wrote about his running.

A 50-day hospital stay earlier this year inspired the running fixation and a blog titled "RunSickBoyRun," which now gets an average 300 unique viewers per day from all around the world.

And a local executive whose child has cystic fibrosis is helping fund Sharpe's latest project, a soon-to-launch Web site that he hopes will be international in scope. CysticLife is designed to be a hub for his "cystas" and "fibros," and their friends, loved ones and the public.

But not everything is going well for Sharpe — he's set to lose his health insurance.

His mother, Christine Hiemstra, works in accounting for the University of Arizona's Campus Agricultural Center, and all his life Sharpe has been on her health policy. He's been allowed to stay on the insurance into adulthood because state coverage has always been extended to employees' dependent adult disabled offspring over the age of 23.

But a bill signed into law by Gov. Jan Brewer last month eliminates coverage for Sharpe and 360 other disabled adult offspring of state employees. Also cut from coverage are domestic partners of state employees and employees' offspring ages 23 and 24 who are full-time students. Altogether, about 2,200 people will be affected, Arizona Department of Administration data show.

Though the law took effect Thursday, those slated to lose their insurance are not expected to be cut from their plans until Nov. 24 at the earliest, state officials say. The legislation is still under legal review.

"I have faith," Hiemstra said. "I just don't believe the state will look at all these disabled adults and kick them to the curb."

Sharpe shares his mother's positive attitude. He credits it with keeping him healthy in the face of an illness that is the most common fatal genetically transmitted disease among North America's white population.

"I kind of signed a lease with God on my life. At some point, I'm going to have to return it to him. But I'm going to go way over on the miles," Sharpe said. "We do have more control over our CF than we hold ourselves accountable for. My lung function has gone up 10 percent since I started my running blog."

When Sharpe was born in 1980, the life expectancy for a cystic fibrosis baby was 20.

Dr. Mark Brown, a professor of clinical pediatrics at the University of Arizona who has been treating cystic fibrosis patients since 1983, said the UA's Cystic Fibrosis Center has a patient who is 69.

While he stressed that's rare, Brown also noted that survival rates have been steadily increasing due to better treatments and improved drugs.

The development of artificial enzymes that help those with cystic fibrosis to digest their food was a huge breakthrough during the 1960s. Before that, many children died of malnutrition, Brown said.

Sharpe takes nine pills containing artificial enzymes before each meal.

Because of digestive troubles, most people with cystic fibrosis are thin. And many, including Sharpe, have raspy voices from coughing and from some of their inhaled medications.

Sharpe is not thin. He stands nearly 5 feet 9 inches and weighs 185 pounds. Growing up, he played football, soccer, basketball and baseball.

His lung function isn't as strong as it was when he was in high school, and he now spends more time in the hospital than in the past. His average now is 90 days per year. He never gave up athletics, but after his illness earlier this year he decided to make a firmer commitment to fitness.

Each morning, he walks and coughs to remove what he calls the "junky stuff" from his lungs.

"If I eat too late or shower too early, I'll throw everything up," he said last week during a walk through his parents' midtown neighborhood with his dog, Jezzabel, and his girlfriend, Mandi Melin, 22. "My food digests really slow. Throughout the night I'll be coughing and swallowing mucus without even knowing."

He follows the walk with a shower, where he coughs more.

"The shower sounds like a war zone," Melin said.

After his shower, he begins the first of his four daily treatments. Each lasts 45 to 75 minutes. He puts on a vest with built-in equipment and that sounds like a washing machine and pounds his chest to help shake mucus from his lungs. He also uses a nebulizer, which delivers medications directly to the lungs. Before Sharpe got the vest, Hiemstra had to pound her son by hand — twice a day for 20 years.

During and between treatments, Sharpe is on his computer. He sends out short messages by Twitter, writes blog entries and works on the launch of CysticLife. Its funding came from local executive Court Gettel, whose son, Walker, has the disease. Gettel and Sharpe met at a fundraising gala last year.

"Ronnie has a lot of passion for life," Gettel said.

Melin said Sharpe is often on the phone with parents of newly diagnosed children, and also with teenagers who often want to speak with someone other than their friends or parents. Sharpe is a frequent presence at Cystic Fibrosis Foundation events in both Tucson and in Phoenix, where Melin lives.

RunSickBoyRun has sparked emotional debate by posters on issues such as whether people with the disease should be working full-time jobs, and what parents should do about having more children if they are both carriers of the cystic fibrosis gene, which means there's a 25 percent chance their baby will be born with the disease.

Melin graduated from Syracuse University in December and now works full time for CysticLife. She also helps with the RunSickBoyRun blog and is a constant by Sharpe's side.

"Mandi is my rock," Sharpe wrote in a recent blog. "I had my mom to lean on for so many years (and still do) that I knew that I would need a strong and confident woman in my life in order to make a relationship work long term. . . . Mandi does the perfect job of kicking me in the butt, but then bringing me ice."

The risks of exercising with cystic fibrosis include low oxygen levels and ruptured blood vessels in the lungs, which is extremely dangerous. That's why while Sharpe runs, Melin runs alongside, constantly checking phlegm he spits out for spots of blood.

Melin also sets Sharpe's running goals. He'd like to run one of the cystic fibrosis organized walks, which are 5 kilometers. But his runs are often difficult. Last week, he said his phlegm felt like Super Glue, and he couldn't speak for several minutes after he was finished.

Brown, the UMC doctor, said exercise is good not only for clearing out the mucus but also because the big breaths required for exercise help keep the lungs open. And exercise, among other things, releases hormones that promote the development of muscle tissue, so the benefits outweigh the risks, Brown said.

While Sharpe and his mother have faith that the insurance problem will sort itself out, Melin is more concerned. One of his recent hospital stays ran up a bill of nearly $400,000. He's had numerous surgeries, and his medications alone are thousands of dollars per month.

Sharpe has applied for the state's form of Medicaid, the Arizona Health Care Cost Containment System, in the past. Though he doesn't have an income, he has too much money in the bank to qualify, he said.

Melin said the solution may be marrying Sharpe and finding a job with good enough benefits to cover them both.

For now, Sharpe and Melin remain hopeful that a legal review of the new legislation will rule in Sharpe's favor. In the meantime, Sharpe is focusing on increasing awareness of a disease he believes will be cured one day.

And he continues to run.

"When you are feeling sick, that's when you want to push harder," he said. "For most chronic illnesses, a lot of it is your mentality. If you sit on a couch all day and do nothing but feeling sorry for yourself, you are going to die."

No Excuses.

Here is what I watch...and then I get my butt on the treadmill, even if it's a bad day, and I've coughed up streaks of blood, and almost thrown up because my prednisone is a lower dose and my breathing sucks as I get bootin' it on the treadmill. Just another reason to "JUST DO IT"...it's really going to make the difference.

Three month anniversary

Today is the big day! I've now officially been working out 3-4 times a week for three months. Improvements I've noticed: stomach is nicer, legs are more trim, feel better, require less oxygen when working out, less congested on days that I work out, was able to kick an infection with oral antibiotics for the first time in YEARS. all in all exercising has probably saved my life...literally.

Today though was really hard. It was the fourth work out of the week, and boy am I feeling the effects of half a measly mg of prednisone. At one point i had to stop as i worked out becuase i thought i was going to throw up from breathing so hard, and I was just doing my regular routine on the treadmill, that i excelled at only two days ago! prednisone is a tricky tricky drug. I also had to increase my oxygen SOO much today because of the decrease in prednisone. I think it will take about a week for my body to get used to it, and then i'll be able to work out normally again. But hey at least i got on the treadmill, even if it was only for 30 minutes instead of my normal 40.
Tomorrow I go look at elipitcal trainers. They're on sale for half price at canadian tire. Tonight I'm going over to a good friends house from university. I have not seen her in forever, so it will be really nice. She also has been on prednisone (for other health reasons, my roomate went on prednisone this summer for an allergic reaction as well, you think the medical world would be able to come up with another steroid other then prednisone, yet it seems to be the universal drug) anyways so she will be able to feel my pain about the prednisone issues!

Breathing Easy

So I dropped from 12 mg of prednisone to 11.5 mg of prednisone, which the doctors have told me is childs play and I shouldn't feel any effects...WRONG. I am more short of breath (three days after dropping the med, the usual amount of time it takes to feel the effects) and I am coughing and a bit more conjested. It is amazing how much my body is addicted to this steriod. I know it's vain but I totally just want my chipmunk puffy face to go down! haha the steroid makes it all puffed up. I mean I've got graduation photos on the 26th that I have to look good for! haha

It usually takes about a week for me to start feeling better after I drop some mg's of prednisone. So I think by Wednesday I should be good again. I still can't believe my body noticed 0.5mg drop. gesh. This drug is heavy duty.

I didn't get on the treadmill today...I know I know. But my feet hurt so tomorrow will be my fourth time this week. And tomorrow for sure I am getting on that treadmill.

I was reading about a young man who passed away from a lung transplant today...very sad. It sucks actually. If you go through the energy, time and years of waiting for some new lungs, and you are blessed and lucky enough to recieve those new lungs, you shouldn't die afterwards. I can see why some people do not want to go through transplant. This young man had to move away from his home to the nearest transplant facility and he waited on the list for two years, away from friends and family and being sick in and out of hospital. He then recieves these glorious new lungs...and then he was taken away. It's not fair. He should not have died.... I mean come on, he did all the hard work...someone should have given him a break...sigh, it's just not fair. Sending out thoughts to his friends and family....breathe easy now.

It just motivated me even more to get back on the treadmill tomorrow. Also tomorrow will be my three month anniversary of working out, so obviously I must work out on that day!

Article from Paper

I was reading another woman's blog today (check out Natalia's CF blog by clicking here) and she posted this article from the Globe and Mail.

The article is about a woman with MS and what it's like to feel tired and be fighting a chronic illness, yet look outwardly healthy. This relates back to CF a lot, since it's hard for people to understand what it's like when us CF'ers get sick or run down with an infection. It's hard for people to grasp it, since on the outside we all seem to look 'healthy'. I was talking last night with a girlfriend about working out at the gym, and how I would now have to bring my oxygen to the gym if I ever wanted to go work out there. I would love to know what people would think if this 'fit' 22 year old girl walked into the gym, strapped on her nose oxygen plugs and started bootin' it on the elliptical or treadmill. I think it'd be funny to peer into their heads and see what they were thinking.

Here is the article about the woman with MS, which pertains I think very well to the way people with cystic fibrosis feel.

"The tiredness is hard to describe. It's not like the fatigue you feel when you have completed your first 10-kilometre race or triathlon. I wouldn't know what that feels like, but I've seen the joy and elation that accompanies the exhaustion runners bring to the finish line and this isn't the same kind of tired. Runners are rewarded with endorphin buzzes and recovery time. In the grip of MS fatigue I am not.

It's also not the kind of tired you get when you've stayed up all night to study for an exam and then aced it. You are still grinning with the accomplishment on the way to giving yourself permission to sleep all day – a worn-out, blissful utopia. I know what that feels like and it's not the same kind of exhaustion. There is no joy or elation, no rewards or accomplishments.

MS fatigue is lonely, depressing and full of guilt. It is being exhausted just thinking about doing dishes, vacuuming or knowing there is another day of work ahead. I have become proficient in the art of negotiating with myself.

When I miss work or a social activity, I obsess over the need to explain myself to people. Other times I play the silent martyr, hoping for compassion and understanding that I am unable to ask for because outwardly I look normal and I'm afraid people will think there's nothing wrong."

Taken from the Globe and Mail Article

Side note....I ate two waffles this morning, gorged in syrup. They were delicious. Goals for the day, de-junk laundry room, get on the treadmill again today, also going to start researching the best kind of elliptical trainers.