RIBS!!! Ugh, I have a pain in my ribs.
Last time I wrote I was contemplating my treatment plan. The clinical trial medication I was taking did not seem to be working as I was still culturing MAC. I had been hacking so intensely that that tears would stream down my face and I would gag and nearly puke. Joy...pure joy! After getting tons of fabulous advice from you, along with a lot of contemplation I decided to stop the clinical trial drug. Since then my coughing spells have decreased, but not completely ceased.
A few days ago I developed really intense pain on the right side of my chest. This was like, "Holy Crap! Why did somebody just stab me with a hot knife!" kind of pain. Apparently, when you have CF and you report this to your Pulmonologist he promptly makes you haul your butt in for a CT scan complete with IV contrast. That happened yesterday. We had to rule out a bunch of scary sounding stuff like pulmonary embolisms, pleural effusion, pleurisy and such. I have had pleurisy (inflammation/infection of the lining that surrounds the lungs) and I was convinced that this is what I was dealing with. However, the CT was clear of any of these major complications, even though my left upper lobe is ugly. Hugh sigh of relief. However, this means I'm dealing with a rib injury. I very likely tore the cartilage between my ribs. I did this about 15 years ago in the same area, so I've probably re injured it. Ouchie!!!
Not much can be done. Pain is pain is pain is pain. I can deal with pain. The most concerning thing is that I can't cough, do my Vest, work out or do any kind of airway clearance until the intensity of the pain dies down. I want to cough. I really do. I need to cough. I just can't cough right now. My impulse to avoid the pain outweighs my impulse to cough.
So this is one of those fun little "extra" things we experience with CF. I know others of you have experienced this type of thing. What have you done for airway clearance when this happens. Has anyone tried a rib belt or binding the ribs? Does it work? Any tips or tricks? Right now it's just 800mg of Motrin 3 times daily and rest.
Confessions of a Cyster
Tuesday, April 9, 2013
Tuesday, March 19, 2013
Quandary
I've been mulling something over all day, so I have decided to ask my blog readers for feedback.
I got a text from my awesome CF doctor today. He told me that my latest culture came back positive MAC. For 5 months I have been on a clinical trial for Arikace, an inhaled antibiotic to treat resistant MAC, in hopes of getting my MAC infection under control. I have appointments, including cultures, monthly to monitor my progress. In December and January my cultures were free of the MAC infection and I was hopeful that I finally found something that worked. Today I found out that even if the Arikace was helping at one time, it is no longer doing the trick. I wasn't surprised, because my lungs have been having a rough time for the past month or two. My doctor said that I can go off of the Arikace if I choose.
He's my quandary... I am 5 months into this 6 month clinical trial. If I withdraw from the trial, none of my information will be able to be used in the final trial results. I have spent many, many hours at appointments and doing the required treatments for this trial at home. The coordinators at my hospital have spent countless hours offering this trial. I am the only one at my center enrolled in this trial. My lung function has been constantly declining for the past few months. I have no idea if this is due to the study drug or just CF in general.
So, with one month left should I withdraw from the trial since it is no longer providing me benefit and MAY actually be making me worse. Or should I stick it out. I am lined up to start the Kalydeco trial in Pittsburgh 30 days after I finish the Arikace trial. If I withdraw a month earlier, I will be able to start Kalydeco a month early.
I'm leaning toward seeing through my commitment with this current trial, just because I think it's important to follow through with commitments. However, I feel like I might feel better physically faster if I quit.
What would you do and why?
I got a text from my awesome CF doctor today. He told me that my latest culture came back positive MAC. For 5 months I have been on a clinical trial for Arikace, an inhaled antibiotic to treat resistant MAC, in hopes of getting my MAC infection under control. I have appointments, including cultures, monthly to monitor my progress. In December and January my cultures were free of the MAC infection and I was hopeful that I finally found something that worked. Today I found out that even if the Arikace was helping at one time, it is no longer doing the trick. I wasn't surprised, because my lungs have been having a rough time for the past month or two. My doctor said that I can go off of the Arikace if I choose.
He's my quandary... I am 5 months into this 6 month clinical trial. If I withdraw from the trial, none of my information will be able to be used in the final trial results. I have spent many, many hours at appointments and doing the required treatments for this trial at home. The coordinators at my hospital have spent countless hours offering this trial. I am the only one at my center enrolled in this trial. My lung function has been constantly declining for the past few months. I have no idea if this is due to the study drug or just CF in general.
So, with one month left should I withdraw from the trial since it is no longer providing me benefit and MAY actually be making me worse. Or should I stick it out. I am lined up to start the Kalydeco trial in Pittsburgh 30 days after I finish the Arikace trial. If I withdraw a month earlier, I will be able to start Kalydeco a month early.
I'm leaning toward seeing through my commitment with this current trial, just because I think it's important to follow through with commitments. However, I feel like I might feel better physically faster if I quit.
What would you do and why?
Wednesday, February 27, 2013
The Good, the Bad and the Exciting!
I had my monthly CF clinical trial visit on Monday. I went in feeling fair and expected to just do my routine 4 hours of testing that I have come accustomed to since beginning this trial. I left with a lung exacerbation that I didn't know I had, two new prescriptions and a head full of confusion.
My PFT's dropped 5% since last month and I had been down about 3% at my previous appointment. I am down roughly 16% since last year at this time. The numbers are definitely going in the wrong direction. The doc put me on Avelox (antibiotic) and Spiriva. Apparently, Avelox will do something that the other 4 antibiotics that I take hasn't been doing. Three hundred dollars later I headed home with these new weapons in my arsenal. What are you gonna do?!?!
At my appointment Dr. D and I discussed Kalydeco, again. He really wants me on it. My gene mutation DF508 & R117H is considered a gating mutation, just like the G551D mutation that Kalydeco is FDA approved to treat. We discussed ways to convince the insurance company, then decided that I would just ignorantly take a prescription for Kalydeco to my pharmacy and see if I could sneak it through. That plan was foiled when we learned that there is a huge paperwork process to apply to get the drug.
Then Dr. D came up with the brilliant idea of seeing if they are still recruiting for the R117H Kalydeco study at another facility. I didn't qualify due to the my lung function being higher last year. This year I would qualify...my decline may be a bit of a positive in this case. We knew that the study is wrapping up, but it was worth a shot. I would need a center that would agree to take me in May, since I need to finish this current clinical trial and allow 30 days for the current drug to flush out of my system. I called the Vertex people and they referred me to www.clinicaltrials.gov for a list of study sites. I called the closest one... Pittsburgh Children's Hospital.
Here's the exciting part!!! They said that the study would be open through May and they would love to have me come be a part of it! I'm keeping my fingers and toes crossed that nothing changes that would disqualify me for the study. This is good stuff! The best part is that if I get in on the study I can stay on the drug off label until it's FDA approved. I won't have to fight with the insurance company. I know I am blessed...but this makes me feel doubly blessed! This feels like an answered prayer :-)
My PFT's dropped 5% since last month and I had been down about 3% at my previous appointment. I am down roughly 16% since last year at this time. The numbers are definitely going in the wrong direction. The doc put me on Avelox (antibiotic) and Spiriva. Apparently, Avelox will do something that the other 4 antibiotics that I take hasn't been doing. Three hundred dollars later I headed home with these new weapons in my arsenal. What are you gonna do?!?!
At my appointment Dr. D and I discussed Kalydeco, again. He really wants me on it. My gene mutation DF508 & R117H is considered a gating mutation, just like the G551D mutation that Kalydeco is FDA approved to treat. We discussed ways to convince the insurance company, then decided that I would just ignorantly take a prescription for Kalydeco to my pharmacy and see if I could sneak it through. That plan was foiled when we learned that there is a huge paperwork process to apply to get the drug.
Then Dr. D came up with the brilliant idea of seeing if they are still recruiting for the R117H Kalydeco study at another facility. I didn't qualify due to the my lung function being higher last year. This year I would qualify...my decline may be a bit of a positive in this case. We knew that the study is wrapping up, but it was worth a shot. I would need a center that would agree to take me in May, since I need to finish this current clinical trial and allow 30 days for the current drug to flush out of my system. I called the Vertex people and they referred me to www.clinicaltrials.gov for a list of study sites. I called the closest one... Pittsburgh Children's Hospital.
Here's the exciting part!!! They said that the study would be open through May and they would love to have me come be a part of it! I'm keeping my fingers and toes crossed that nothing changes that would disqualify me for the study. This is good stuff! The best part is that if I get in on the study I can stay on the drug off label until it's FDA approved. I won't have to fight with the insurance company. I know I am blessed...but this makes me feel doubly blessed! This feels like an answered prayer :-)
Friday, February 22, 2013
The Waiting Game
Hello World! It's been a while and I have no excuse, except for feeling a bit boring lately. A couple of readers have requested an update, so here goes...
My health is no better, but not tremendously worse. No huge complaints! I am a bit disappointed that my lung function is back to where it was before I started all of this ridiculous treatment for my Non-Tuberculosis Mycobacterium two and a half years ago. I'm also frustrated that I'm still culturing MAC, but I guess that's the nature of this beast sometimes. I just wish the LOADS of antibiotics that I have been taking for 2 1/2 years straight would have showed some tangible progress. I want clean cultures, Dammit!
In October, I started a clinical trial for the MAC. The trial involves replacing the inhaled Amikacin that I was taking twice daily for once daily inhaled Arikace. The Arikace is the same drug as Amikacin, but it is attached to a lipid that allows it to absorbed deeper and better that Amikacin. The other benefit is that I inhale the Arikace out of a Trio nebulizer, which makes treatment time about 12 minutes. My inhaled antibiotic treatment time decreased by about 48 minutes! I'm really liking the ease of taking the new drug. Another benefit of the clinical trial drug is that it is not supposed to cause the same hearing damage as the Amikacin. The bad news is that even if it's working and I prefer the new drug, once the trial is over in May I have no option to continue. I have to go off of it and wait for FDA approval (years) before I can access it again.
This is the same frustration I'm feeling about Kalydeco. If you are not part of the CF world you may not know about the exciting new drug that has been discovered that basically corrects the malfunctioning CF genes. It was named as the Most Important New Drug of 2012 by Forbes Magazine. For some patients symptoms and progression of the disease have virtually reversed. Lives have changed! The catch...this drug is only FDA approved for 4% of the CF population. Only people with a certain genetic mutation have access at this point. I'm not included in that small group. The good news is that Kalydeco is being trialed in those with my genetic mutation ~ Delta F508 & R117H ~ and the trials have shown impressive improvements in some of those involved! I want this drug and I want it now (said in my best Veruca Salt voice). Unfortunately, I have to wait until this drug is FDA approved, as well. My doctor said this may be another 2-3 years.
So here's the deal...I am very slowly watching my lung function decline, but still holding my own. All while I'm waiting for clinical trials to progress and the government to give me access to these drugs that could rock my world. I asked my insurance company if I could go on Kalydeco off label, but they were not impressed with the $300,000 yearly price tag. I am going to appeal and fight for access to the drug, so we'll see. I feel like I'm desperately trying to save as much lung function I can before my sliver of hope arrives.
Other news in my world... I retired from my career. Whew! This was an extremely difficult and emotional decision for me to make. Trying to juggle a full-time job, 2 (sometimes 3) children, a husband and Cystic Fibrosis has always been chaotic. For many, many years I thrived on the chaos. It made me feel like I was able to do it all. This became more difficult after the NTM diagnosis 2 1/2 years ago when my treatment plan became much more complex. To be honest, I've been faking it for the past couple years. I have been exhausted to the core, sick and struggling. When something had to give, my health got put on the back burner. I knew that this couldn't continue. After a particularly exhausting business trip that left me with another lung exacerbation I decided to go on Short-Term Disability and explore my options. That was in early August. I never went back to my job. I retired...a bit earlier than I expected I would, but I knew it was time. I had the privilege of being with my company for 13 years. I really felt like I had done everything I wanted to do in my career up to this point. I didn't have aspirations to climb the ladder any higher. After 5 1/2 months of trying to determine if I should go back to work or not, I decided that now was the time to devote everything to my family and my health. I am very happy with my decision now, but, jeez, that was a stressful and difficult decision to make.
I guess I had more going on that I thought! I am going to try to post a bit more often. I've missed my readers...
Here's a little song that's been speaking to me lately.
My health is no better, but not tremendously worse. No huge complaints! I am a bit disappointed that my lung function is back to where it was before I started all of this ridiculous treatment for my Non-Tuberculosis Mycobacterium two and a half years ago. I'm also frustrated that I'm still culturing MAC, but I guess that's the nature of this beast sometimes. I just wish the LOADS of antibiotics that I have been taking for 2 1/2 years straight would have showed some tangible progress. I want clean cultures, Dammit!
In October, I started a clinical trial for the MAC. The trial involves replacing the inhaled Amikacin that I was taking twice daily for once daily inhaled Arikace. The Arikace is the same drug as Amikacin, but it is attached to a lipid that allows it to absorbed deeper and better that Amikacin. The other benefit is that I inhale the Arikace out of a Trio nebulizer, which makes treatment time about 12 minutes. My inhaled antibiotic treatment time decreased by about 48 minutes! I'm really liking the ease of taking the new drug. Another benefit of the clinical trial drug is that it is not supposed to cause the same hearing damage as the Amikacin. The bad news is that even if it's working and I prefer the new drug, once the trial is over in May I have no option to continue. I have to go off of it and wait for FDA approval (years) before I can access it again.
This is the same frustration I'm feeling about Kalydeco. If you are not part of the CF world you may not know about the exciting new drug that has been discovered that basically corrects the malfunctioning CF genes. It was named as the Most Important New Drug of 2012 by Forbes Magazine. For some patients symptoms and progression of the disease have virtually reversed. Lives have changed! The catch...this drug is only FDA approved for 4% of the CF population. Only people with a certain genetic mutation have access at this point. I'm not included in that small group. The good news is that Kalydeco is being trialed in those with my genetic mutation ~ Delta F508 & R117H ~ and the trials have shown impressive improvements in some of those involved! I want this drug and I want it now (said in my best Veruca Salt voice). Unfortunately, I have to wait until this drug is FDA approved, as well. My doctor said this may be another 2-3 years.
So here's the deal...I am very slowly watching my lung function decline, but still holding my own. All while I'm waiting for clinical trials to progress and the government to give me access to these drugs that could rock my world. I asked my insurance company if I could go on Kalydeco off label, but they were not impressed with the $300,000 yearly price tag. I am going to appeal and fight for access to the drug, so we'll see. I feel like I'm desperately trying to save as much lung function I can before my sliver of hope arrives.
Other news in my world... I retired from my career. Whew! This was an extremely difficult and emotional decision for me to make. Trying to juggle a full-time job, 2 (sometimes 3) children, a husband and Cystic Fibrosis has always been chaotic. For many, many years I thrived on the chaos. It made me feel like I was able to do it all. This became more difficult after the NTM diagnosis 2 1/2 years ago when my treatment plan became much more complex. To be honest, I've been faking it for the past couple years. I have been exhausted to the core, sick and struggling. When something had to give, my health got put on the back burner. I knew that this couldn't continue. After a particularly exhausting business trip that left me with another lung exacerbation I decided to go on Short-Term Disability and explore my options. That was in early August. I never went back to my job. I retired...a bit earlier than I expected I would, but I knew it was time. I had the privilege of being with my company for 13 years. I really felt like I had done everything I wanted to do in my career up to this point. I didn't have aspirations to climb the ladder any higher. After 5 1/2 months of trying to determine if I should go back to work or not, I decided that now was the time to devote everything to my family and my health. I am very happy with my decision now, but, jeez, that was a stressful and difficult decision to make.
I guess I had more going on that I thought! I am going to try to post a bit more often. I've missed my readers...
Here's a little song that's been speaking to me lately.
Wednesday, August 1, 2012
Boiling Over
Warning!!! I may complain a little in this post. It's where my head is right now. If you are looking for happy thoughts you can skip ahead to the very last paragragh. Happy reading!
Do you ever feel overwhelmed to the point where you feel like you can't make good decisions? Do you ever feel like your running in place, and getting nowhere? Do you ever feel like you're trying to do everything for everyone, but you end up doing nothing well and ignoring your own needs?
Unfortunately, these feelings have been crowding my my life as of late... My surgery went well in May, but it's now two months post-surgery and my body feels broken. A few weeks ago I got the news that my MAC (Mycobacterium Avium Complex) is back. What sucks is that I never even got to a point where I could take a break from treatment. At this point I'm considered as having refractory MAC. This is such and evil and tricky (and acary) bug. The good news is that there is a new clinical trial (Arikace)starting within a month for people with Refractory MAC. I am first in line at my CF center to start this clinical trial. I'm hoping that this inhaled drug will beat this bug into submission.
(this is one day of antibiotics)
The bad news is that I have been feeling lousy. To say that I have been fatigued is an understatement. I had a clinic visit last week. I got put on another antibiotic. That means that I now take 5 antibiotics a day. For 2 years I have been taking 4 antibiotics a day, yet the infection is still brewing. How is that possible? I am now taking inhaled Amikacin, Azithromycin, Ethambutol, Doxycycline, and Moxifloxacin. I have tried the power of "positive thinking" to no avail. Will this infection ever succumb? Why am I so, so unbeleivably tired? Will my belly ever get used to the insult of all of these medications?
After feeling really, really lousy for several months, I finally decided that I had to take some time off of work to get my health in check. I need to focus on my treatments (all 4 hours a day of them) and this clinical trial. I have pushed and pushed and pushed through...for the past 2 years of this treatment. I have told myself that I can do anything I put my mind to. Lately, my body has decided to revolt. I have finally decided to listen to my body, instead of trying to convince myself that all is well. Growing older with a progressive disease can be really, really hard...
I turn 37 later this month! That's life expectancy for CF, isn't it? I'm looking very forward to blasting past "life expectancy"!
Do you ever feel overwhelmed to the point where you feel like you can't make good decisions? Do you ever feel like your running in place, and getting nowhere? Do you ever feel like you're trying to do everything for everyone, but you end up doing nothing well and ignoring your own needs?
Unfortunately, these feelings have been crowding my my life as of late... My surgery went well in May, but it's now two months post-surgery and my body feels broken. A few weeks ago I got the news that my MAC (Mycobacterium Avium Complex) is back. What sucks is that I never even got to a point where I could take a break from treatment. At this point I'm considered as having refractory MAC. This is such and evil and tricky (and acary) bug. The good news is that there is a new clinical trial (Arikace)starting within a month for people with Refractory MAC. I am first in line at my CF center to start this clinical trial. I'm hoping that this inhaled drug will beat this bug into submission.
The bad news is that I have been feeling lousy. To say that I have been fatigued is an understatement. I had a clinic visit last week. I got put on another antibiotic. That means that I now take 5 antibiotics a day. For 2 years I have been taking 4 antibiotics a day, yet the infection is still brewing. How is that possible? I am now taking inhaled Amikacin, Azithromycin, Ethambutol, Doxycycline, and Moxifloxacin. I have tried the power of "positive thinking" to no avail. Will this infection ever succumb? Why am I so, so unbeleivably tired? Will my belly ever get used to the insult of all of these medications?
After feeling really, really lousy for several months, I finally decided that I had to take some time off of work to get my health in check. I need to focus on my treatments (all 4 hours a day of them) and this clinical trial. I have pushed and pushed and pushed through...for the past 2 years of this treatment. I have told myself that I can do anything I put my mind to. Lately, my body has decided to revolt. I have finally decided to listen to my body, instead of trying to convince myself that all is well. Growing older with a progressive disease can be really, really hard...
I turn 37 later this month! That's life expectancy for CF, isn't it? I'm looking very forward to blasting past "life expectancy"!
Thursday, April 26, 2012
Hollow Inside
Hello out there! Hello? Is anybody out there? It's certainly been a while. I was asked twice today for an update, so I figured it was a fine time to dust off the keyboard and write a little.
Life has been busy. Life is always busy, so this isn't really new. I've been traveling a lot for work, with a fun family vacation to Florida thrown into the mix. We went to the Gulf Coast of Florida again this year. It was a great time!
The week I got back I traveled to Wichita, Kansas for work and got to meet up with Justine K., a recent (1.5 year) double-lung transplant recipient. I adore her!
On the health front my lungs have been pretty stable. I continue to take enough antibiotics to cure a village, but the side effects are manageable. To be honest, I have been dealing with more non-CF health issues lately. I am preparing for surgery in 3 weeks. I am preparing to have my 3rd organ removed. I will soon be saying Good Bye to this:
Out of respect of the one or two boy readers I have, I will spare you the gory details. Half of me is looking forward to being rid of this nuisance of an organ, while part of me is a tiny bit sad...feeling as if I'm losing my womanhood. Another part of me is wondering how many non-essential organs a girl can do without. This would be the 3rd organ I will be ridding myself of. My uterus is preceded in death by my gall bladder and appendix. I'm tempted to ask if they can take my spleen and tonsils while I'm under, if only to avoid future organ removal surgeries. I really hate surgery. The night after laprascopic surgery can be a bitch.
I was starting to feel a bit bummed about these circumstances. I was feeling old...something I typically feel privileged to have achieved. The newly discovered gray hairs that I found last month didn't help the situation. I was feeling like I've gotten to a point in life where normal things are breaking down. Then I was feeling a huge amount of guilt for feeling this way, knowing that every year has been a gift. I was having such a complex mixture of emotions.
My funk didn't last long at all, though. Justine helped tremendously in reversing this attitude. Justine had the procedure I'm about to have one week prior to our meeting. She is 10 years younger than me. About six months ago she had feet of both her small and large intestines removed. A year and a half ago she had both lungs removed and replaced. She has also had her gall bladder out. Justine has definitely got me beat when it comes to organ loss. Just meeting her gave me that dose of perspective I needed. Have I told you yet that I love Justine!
I returned home from Kansas, dyed my hair and changed my attitude. The surgery is not such a big deal in the scheme of things. My uterus has served me well, but it's time that we part ways...and I have now come to terms with it. I'll take all the good juju you can spare! I'll keep you posted...
Life has been busy. Life is always busy, so this isn't really new. I've been traveling a lot for work, with a fun family vacation to Florida thrown into the mix. We went to the Gulf Coast of Florida again this year. It was a great time!
The week I got back I traveled to Wichita, Kansas for work and got to meet up with Justine K., a recent (1.5 year) double-lung transplant recipient. I adore her!
On the health front my lungs have been pretty stable. I continue to take enough antibiotics to cure a village, but the side effects are manageable. To be honest, I have been dealing with more non-CF health issues lately. I am preparing for surgery in 3 weeks. I am preparing to have my 3rd organ removed. I will soon be saying Good Bye to this:
I was starting to feel a bit bummed about these circumstances. I was feeling old...something I typically feel privileged to have achieved. The newly discovered gray hairs that I found last month didn't help the situation. I was feeling like I've gotten to a point in life where normal things are breaking down. Then I was feeling a huge amount of guilt for feeling this way, knowing that every year has been a gift. I was having such a complex mixture of emotions.
My funk didn't last long at all, though. Justine helped tremendously in reversing this attitude. Justine had the procedure I'm about to have one week prior to our meeting. She is 10 years younger than me. About six months ago she had feet of both her small and large intestines removed. A year and a half ago she had both lungs removed and replaced. She has also had her gall bladder out. Justine has definitely got me beat when it comes to organ loss. Just meeting her gave me that dose of perspective I needed. Have I told you yet that I love Justine!
I returned home from Kansas, dyed my hair and changed my attitude. The surgery is not such a big deal in the scheme of things. My uterus has served me well, but it's time that we part ways...and I have now come to terms with it. I'll take all the good juju you can spare! I'll keep you posted...
Friday, February 17, 2012
I Won...I Won!
I was so excited when I learned that my dear friend, Jenny, author of My Life as a Livingston recently chose me for a Liebster Blog Award. She chose ME! I adore Jenny's writing style, her sense of humor and the honesty that pours off of the page with every post. She is absolutely one of my faves, so I felt honored to be selected as one of her faves, too!
Liebster is a German word that literally translates to "favorite", "dearest" or "beloved". By one blogger giving it to another, they are essentially saying, your blog is a favorite of mine.
The rules of the Liebster Blog Award are:
1) Acknowledge the blogger who gave the award by linking back to them
2) Give this award to 5 other bloggers (who have fewer than 200 readers), and let them know through a comment on their blog
3) Post the award on your blog
4) Best of all - bask in the glory, have fun and share the love!
The process of choosing just 5 favorites was very difficult for me. I enjoy all of the blogs I read or I wouldn't be reading them. However, these are 5 blogs that really float my boat.
1) Welcome to Joshland ~ Josh is a great friend, a fabulous guy and a tremendous advocate within the CF community. I have great respect for Josh and his puppet-friend, Moganko. Josh's posts are usually heartwarming, often hilarious and always brutally honest. I like it...I like it a lot!
2) Unknown Cystic ~ Who the hell is this guy? I dunno? Whoever he is...I adore him! Unknown, has decided to keep his identity a secret, which likely allows him to speak his mind and share details about his life that are sometimes jaw-dropping. Unknown's posts make me laugh...ALWAYS...even when talking about the most horrific situations. There's just something about that mystery man!
3) Lizi's Lifeline's ~ Beautiful...it's just beautiful. Lizi's posts read like a poem or an amazing piece of literature. Lizi is a writer and she has CF. She has the ability to put many of the feelings that we share into words that make me never want to stop reading. I devour her posts. Lizi is taking a bit of a blog break, but I will be right here waiting when she returns.
4) Life in the Pickle Jar ~ Kelly is the mother of three children, two of which have CF. Kelly is HILARIOUS! She does not mince words. Kelly lays it all out there...the good, the bad and the ugly. Kelly recently moved her family from Iowa to Cordoba, Spain. I have loved following the adventures of her and her clan!
5) Dollars and Sense Decor ~ Nope, it's not a CF blog. Tracy is the mother of one of my daughter's classmates. She lives nearby and I like to live vicariously through her. She is crafty (which I am not), she is a decorating queen (which I am not) and she's got amazing style (which I do not). Her blog is tons of fun, which I look forward to, since most of the other blogs I read deal with heavy stuff. Tracy rocks!
Check these blogs out! You won't be disappointed!
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