FAQ
All the questions the entire world has either asked me in some form or other or WANTED to ask but was too apoplectic to actually articulate because apparently former homemakers aren't ALLOWED to know anything sciency. Or something.¯\_(ツ)_/¯
It significantly impacts all epithelial tissues and mucous membranes, which means it substantially impacts the respiratory system, gut and reproductive tract. People typically die young, usually from antibiotic-resistant infections.
At the other end of the spectrum are people desperate for help who want more than I can give. I really don't want to be dragged into your drama and desperate desire for medical miracles.
I'm MUCH healthier than I used to be. It's taken a LOT of years to make that happen. I cannot wave a magic wand and "save" you from your dire medical issue. SORRY.
Instead, I have corrected the chemical imbalance my defect fosters, I have redressed a lifelong raftload of nutritional deficiencies and killed a large backlog of old infections and made dietary and lifestyle changes to appropriately accommodate my defect.
Rest assured, the genetic defect remains.
And consider getting therapy or at least doing some grief work.
What I am is pro health. It's just a wild and unexpected outcome that actually eating better and "living right" has eliminated my need for the boatloads of medication I used to need to stay alive.
Please, please PLEASE do not DO that. That's a good way to end up in the ER or even DIE.
Please, just READ for now. You clearly need a LOT more education before you are ready to ACT on anything I've said.
This is NOT medical advice. If you need medical advice: See a Doctor.
But if you are interested in managing your health better via diet and lifestyle: Start Here
And, also, there is that one gal who messages me every few months who has classical CF and is still alive even though her number was more or less up when she put in enormous work to track me down because I had left all the CF lists. The rest of y'all are more than welcome to go to hell as far as I'm concerned.
(If you make money off my work, I expect a cut. If it's a free service, I guess you can put in slave labor like I do if you wish for some reason.)
If you want to make a free blogspot site that looks like this one: It is the Soho Neon theme (the BLACK version of the Soho theme) and I changed the picture to one of the pictures blogspot makes available of the ocean.
Why the ocean? Because people with CF who surf do better, healthwise, and this fact led to a non-drug treatment for CF, nebulized hypertonic saline. I used to nap at the beach while homeless when I was in a lot of pain and if you get nothing else from this site, GO TO THE BEACH for your health. You don't even have to go in the water. The air at the beach is heavy with minerals.
Please note this is a living document which means I update stuff as I notice typos or feel I left out info. If you translate it, you should post notice that you cannot be held responsible for differences in the two sites due to me editing things after you translated a post or page.
This site also frequently links to OTHER writing by me elsewhere (such as this long comment by me on a forum) and has many internal cross-links. You will need to come up with some means to accommodate such details. (One possibility: Make a PAGE on blogspot rather than a post for translations of things I link to off-site and include the link to the original and a note.)
Q: What is Atypical Cystic Fibrosis?
A: The above link gives the long version. The short version: It's a genetic defect, a relatively mild form of a very deadly condition with the medically inaccurate name cystic fibrosis, AKA "sixty-five roses", a mispronunciation by a child. Classical CF is also known by the more medically accurate term mucoviscidosis.It significantly impacts all epithelial tissues and mucous membranes, which means it substantially impacts the respiratory system, gut and reproductive tract. People typically die young, usually from antibiotic-resistant infections.
For The Record: I do NOT know my alleles, which is one of the reasons I left all the CF lists years ago. In CF-land, knowing your mutations is essential street cred for being taken seriously as someone who REALLY has CF.So a lot of people in CF-land refuse to believe I even have CF, much less that I am getting better. That's Just Crazeh Talk.
At the other end of the spectrum are people desperate for help who want more than I can give. I really don't want to be dragged into your drama and desperate desire for medical miracles.
I'm MUCH healthier than I used to be. It's taken a LOT of years to make that happen. I cannot wave a magic wand and "save" you from your dire medical issue. SORRY.
Q: Is this blog medical advice?
A. Nope. Absolutely not. You should view it as one of the following three things:- Self help for a knowledgeable adult
- "For Entertainment Purposes ONLY"
- Some woman talking to herself in her little corner of the internet to try to lessen the degree to which she is going stir crazy
Q: Are you a medical professional?
A. Nope. I'm a MOM and former homemaker, which is also a caring profession of sorts, though it comes with no paycheck per se.Q: How did you find The Cure for CF??!!!
A: I didn't. There is currently no cure for CF, which is a genetic defect. So I still have CF. It's just no longer killing me.Q: BUT you SAID you were GETTING WELL! You LIED TO ME!
A: I did not lie to you. I am getting well, just not by fixing my genetic defect.Instead, I have corrected the chemical imbalance my defect fosters, I have redressed a lifelong raftload of nutritional deficiencies and killed a large backlog of old infections and made dietary and lifestyle changes to appropriately accommodate my defect.
Rest assured, the genetic defect remains.
Q: WHY ARE YOU TRIGGERING ME????
A: If you have a history of eating disorder, putting your sick child through hell to keep them alive or some other traumatic backstory and can't deal with reading this without feeling like I am somehow HURTING YOU and without feeling entitled to attack me because of it, let me suggest you just NOT read my blog.And consider getting therapy or at least doing some grief work.
Q: How can you be so ANTI DRUG?? I need my drugs to STAY ALIVE!!!
A: Ummmm. I'm not. Like so very NOT.What I am is pro health. It's just a wild and unexpected outcome that actually eating better and "living right" has eliminated my need for the boatloads of medication I used to need to stay alive.
Q: Oh! Yay! I am so thrilled I found your blog! I can totes promptly go COLD TURKEY off ALL MY DRUGS like RIGHT NOW!!!! Amirite?
A. No, you are not right.Please, please PLEASE do not DO that. That's a good way to end up in the ER or even DIE.
Please, just READ for now. You clearly need a LOT more education before you are ready to ACT on anything I've said.
Q: But..but... you are Giving out FREE medical advice on the internet AND...
A: No, I'm NOT. I'm really, really REALLY so NOT. I'm just talking about ME and MY LIFE and MY Condition and MY experience and my opinions. At best, this is food for thought for random internet strangers interested in upping their game, healthwise.This is NOT medical advice. If you need medical advice: See a Doctor.
But if you are interested in managing your health better via diet and lifestyle: Start Here
Q. Why in the hell do you PERSIST in blogging about your health when everyone CLEARLY HATES YOU and also DOES NOT BELIEVE YOU???
A. My first health site was started because I wrote an email about health stuff to a gifted homeschooling list full of smart people where my parenting advice was seemingly somewhat "popular" (at least with a vocal minority -- perhaps everyone else hated me) and people were emailing me and asking my permission to forward it to friends/relatives with CF or who had a child with CF. So I published it to a website with the idea that then people could share the links without emailing me to ask permission first.And, also, there is that one gal who messages me every few months who has classical CF and is still alive even though her number was more or less up when she put in enormous work to track me down because I had left all the CF lists. The rest of y'all are more than welcome to go to hell as far as I'm concerned.
Q. How can I contact you to discuss health stuff?
A. If you have health-related questions for me or wish to discuss any info here, you can post on one of the following Reddit subs. Do not contact me via ANY other method with health questions.Legal Notice
If you want to make a mirror of this site in another language without monetizing it, please state clearly that it is a TRANSLATION of THIS SITE and link to this site. You can use the hashtag #Eclogiselle to mark it so it is more discoverable.(If you make money off my work, I expect a cut. If it's a free service, I guess you can put in slave labor like I do if you wish for some reason.)
If you want to make a free blogspot site that looks like this one: It is the Soho Neon theme (the BLACK version of the Soho theme) and I changed the picture to one of the pictures blogspot makes available of the ocean.
Why the ocean? Because people with CF who surf do better, healthwise, and this fact led to a non-drug treatment for CF, nebulized hypertonic saline. I used to nap at the beach while homeless when I was in a lot of pain and if you get nothing else from this site, GO TO THE BEACH for your health. You don't even have to go in the water. The air at the beach is heavy with minerals.
Please note this is a living document which means I update stuff as I notice typos or feel I left out info. If you translate it, you should post notice that you cannot be held responsible for differences in the two sites due to me editing things after you translated a post or page.
This site also frequently links to OTHER writing by me elsewhere (such as this long comment by me on a forum) and has many internal cross-links. You will need to come up with some means to accommodate such details. (One possibility: Make a PAGE on blogspot rather than a post for translations of things I link to off-site and include the link to the original and a note.)
