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PCD Smiles 

PCD Smiles is a non-profit organization, funded primarily through donations.

Our mission is to bring Smiles to hospitalized PCD patients and or those PCD patients who have recently returned home from a hospitalization through the gift of Cheer Packages no matter their age.

To request a Cheer Package for you or your hospitalized PCDer, please visit our "Request Cheer Package" link and fill out our secure form.

If you would like to donate items to PCD Smiles's Cheer Packages, please visit our "Donations" page.

 

We have several ways that you can donate to PCD Smiles;

Visit Smile E. Turtle's Amazon Wishlist; https://www.amazon.com/hz/wishlist/ls/KNO9BAJR74I4?ref_=wl_share

Or; for more information on how you can donate, please visit our "Donation" page to check out our "Do & Don't” policies at; http://pcdsmiles.com/support-pcdsmiles/donations2

Or; to sponsor a PCD Smiles Cheer-box today!
https://shop.pcdstyle.com/index.php?id_category=14&controller=category

Or; to get your “Official” turtle care ribbon gear today!
https://www.smileecove.com/stores/cove

Thank you for your consideration!

#PCDsmiles #PCDstyle #PCDsmilesCookbook  #PrimaryCiliaryDyskinesia  #SmileEcove 

#PCDawareness to help find a #cure4PCD!

 

 

 

Featured Articles

Daily Journal Prompt 24 October

Today. What did you eat, where did you go and who did you talk to? What did you think about?

Respiratory Mucus 101

 The human body has a natural filter for dust, bacteria, and debris. That filter consists of mucus and cilia, which protect human tissue and makes sure that dust, bacteria, and debris do not reach certain tissues or organs of the human body. The cilia in the respiratory system traps the larger pieces of the dust, bacteria, and debris and moves those pieces out of the respiratory system via cough or sneezing. The smaller pieces of the dust, bacteria, and debris is trapped in the mucus; the cilia then help to transport the debris filled mucus out of the respiratory system via cough or sneezing. Mucus production in the respiratory system is completely normal. Our respiratory system can not function without mucus. Mucus also helps to keep the respiratory tissue moist and in proper working order. Mucus often changes in color, viscosity, and volume due to a number of reasons including bacterial infections, viral infections, types of trapped debris, and even because of inflammation. It is theorized that the human body naturally produces between ten and one hundred milliliters of mucus a day. Mucus that is expelled from the respiratory system is oftentimes referred to as sputum. 

Sputum can give important information about the status of a patient’s health. People do not often notice the everyday natural sputum. It is only when sputum is overproduced or hyper-secreted, when their respiratory system is irritated or inflamed, or when their sputum has changed in color and viscosity that a person is bothered by their mucus. Hyper-secretions happen during the body’s normal immune system process and is a good sign that tells you that your immune system is working. Changes in color and viscosity also give us a clue that the body’s normal immune responses are working. From a viscosity stand point thick mucus can be laden with dust and debris as well as bacteria, so it is not always an indication of a contagious illness in the patient. Whereas thin, slippery mucus is laden with viruses; and is often your most contagious mucus from the respiratory system.

Color changes in mucus are what tend to bother people, not always the patient though, the most about mucus. Mainly due to the myth that green or yellow mucus is always contagious. No one is really sure how the myth got started. But that myth permeates the medical field to this very day, and is constantly passed around; even in medical books that medical students study from. The color of mucus/sputum can range from clear to black. Mucus that is clear, white, grey, frothy, and or any combination of those and that is overly abundant in volume typically happens at the beginning of a viral infection and is the most contagious of the colors of mucus. Red and black mucus, which can be frothy and prevalent or not, indicates the presence of blood. Blood in the mucus can happen at the beginning of a bacterial infection, indicating an infection is brewing. But bloody mucus can also be signs of a serious infection like NTM (nontuberculosis mycobacterium), PA (pseudomonas), TB (tuberculosis), and even cancer. Typically expelling streaks of blood or expelling less than 4 tablespoons of blood in a single day can be handled at your next appointment. Or you can even ring your physician’s office to inform them of the change in your mucus which contains blood. However expelling more than a cup full of blood, in a single day, in your mucus requires immediate medical intervention; so ring 911, don’t wait. Green and yellow mucus are typically bacterial infections and a natural part of the immune system’s inflammation response; the mucus is typically not contagious at this point. This is because of the body’s immune process; the presence of white blood cells, the presence of cell debris, and the very low viral load present in the mucus at this point. Green and yellow mucus is usually not an indication that bacteria have taken over, however it does signal the infection is bacterial and needs antibiotics. A strong indicator that stronger antibiotics maybe necessary to clear a bacterial infection is how dark the green mucus is. 

Mucus secretion and mucus clearance are extremely important in maintaining a healthy respiratory system. In PCD where airway clearance is already hindered by non-working or partially-working cilia the other half of the body’s natural defense against dust, bacteria, and debris, mucus is also compromised. The body’s natural response to clear out stuck mucus is to secret even more mucus. That leads to a constant cycle of hyper-secretion of mucus which becomes stuck, so the body make even more mucus in its attempt to clear the already stuck mucus. This leads to mucus becoming thick and sticky. That stuck mucus hangs out in the respiratory system for extraordinarily long periods of time. That extra time lows trapped dust, bacteria, and debris to become infections. Bacteria and organisms that are usually harmless to people, because their systems can clear those bacteria and organism, can become trapped so long in a PCD patient’s respiratory system that those bacteria and organisms take up residence and cause illness in the PCD patient. These infections can become chronic, lead to overall decline in respiratory function, and eventually lead to respiratory failure.

Be sure to visit us next week for another Topic Thursday!

Join our Facebook group Turtle Talk Café today, click here.

We have several ways that you can donate to PCD Smiles;

- Visit Smile E. Turtle's Amazon Wishlist; https://www.amazon.com/hz/wishlist/ls/KNO9BAJR74I4?ref_=wl_share

- For more information on how you can donate, please visit our "Donation" page to check out our "Do & Don't policies at; https://pcdsmiles.com/support-pcdsmiles/donations2

- To sponsor a PCD Smiles Cheer-box today!

https://store.pcdstyle.com/21-donations

- To shop for your “Official” turtle care ribbon gear today!

www.pcdstyle.com

or

https://www.smileecove.com/stores/cove

Thank you for your consideration!

#PCDsmiles  #PCDstyle  #PCDsmilesCookbook  #PrimaryCiliaryDyskinesia  #SmileEcove  #TurtleTalk  #TurtleTalkCafe  #PCD

#PCDawareness to help find a #cure4PCD

NTM Pulmonary Disease & PCD

***For the purposes of this topic we will be focusing solely on NTM pulmonary disease in regards to the PCD patient. Please keep in mind that many medical conditions can contribute to the acquisition of NTM pulmonary disease and affect it’s disease path. This topic is not meant to be an all encompassing article on NTM, nor does it replace or is it intended to replace medical advice from your physician. If you believe that you may have an NTM pulmonary disease, please seek the advice of a licensed physician or licensed Infectious Disease Specialist.***

NTM pulmonary disease, or Nontuberculosis mycobacterial lung disease, is caused by inhaling naturally occurring mycobacteria which are found in the environment; most notably water and soil. People are exposed to NTMs every single day, everywhere they go, and they do not get sick from it. Those who develop NTM pulmonary disease are people who have other health issues like preexisting or prior lung disease, and or a weakened immune system. NTM is also called atypical TB or atypical tuberculosis, EM or environmental mycobacteria, environmental tuberculosis, MOTT or mycobacteria other than tuberculosis, and MAC or mycobacterium avium complex; MAC is actually just one of the 170, known to date, species of NTM. Typically the species of NTM that cause moderate to severe pulmonary disease in pulmonary patients are mycobacteria avium complex also known as M. avium complex or MAC, MAI also known as M. intracellulare, mycobacteria abscessus also known as M. abscessus, and mycobacteria kansasii also known as M. kansasii. MAC, MAI, and M. kansasii are the most common NTM species to cause pulmonary disease; where as M. abscessus is the least common and the most difficult of the four species of NTM that cause pulmonary disease to treat. Once a person develops a NTM pulmonary disease they are not considered to be contagious even when showing signs of illness, because current research has shown that NTMs can not be passed from person to person. NTMs if caught early are treatable; though treatment is often very expensive, and can last two to three years in length. If left untreated, the pulmonary disease will worsen causing structural damage and worsening lung function. It’s extremely important to note that due to NTM species’ resistance to antibiotics; treatment of a NTM pulmonary disease should only be considered if there is solid scientific evidence that the NTM is causing illness to the patient.

NTMs can be divided into two classes; slow growing NTMs and rapid growing NTMs. Slow growing NTMs require more than fourteen days of incubation for mature growth. The most common slow growing NTMs that cause pulmonary disease are MAC, MAI, and M. kansasii. M. kansasii is the easiest of the three to treat; often being able to be treated with only three antibiotics. Whereas MAC and MAI can be stubborn and require three to five antibiotics, for up to eighteen months, to achieve effective treatment. Pulmonary disease from slow growing NTMs progresses slowly and has a overall better chance of successful treatment; which increases the chance of preventing pulmonary structural defects in the patient. Rapid growing NTMs can mature in just seven days of incubation. The common rapid growing NTM that causes pulmonary disease is M. abscessus. Rapid growing NTMs are often the most difficult and most stubborn of the NTMs to treat, because they can form biofilms and they can interact with protozoans; to protect themselves from antibiotics. M. abscessus usually requires lengthy treatment with three to five antibiotics for two to three years, chemotherapy in patients that can withstand it, tissue resection of the diseased lung tissue, and or any combination of the aforementioned treatments. M. abscessus is notoriously difficult to treat with antibiotic therapy alone. Pulmonary disease from rapid growing NTMs can progress very fast and have a poorer chance of successful treatment; which increases the likelihood of permanent pulmonary structural defects.

Not all persons with NTM pulmonary disease will have symptoms of disease; especially in the early stages of the disease. As the disease progresses, the more likely the person is to exhibit symptoms. Common symptoms seen with NTM pulmonary disease are; chronic fatigue, chronic cough, chest pain, wheezing, malaise, coughing up bloody mucus, night sweats, fever, reoccurring lung infections, shortness of breath, unexplained weight loss, and or unexplained loss of appetite. Unfortunately because there are no typical clinical features of NTM pulmonary disease diagnosis is often delayed, even for years.

Once successful treatment has been achieved the treatment and monitoring of NTM pulmonary disease shifts to preventing reinfection of the NTM species or infection with a different NTM species. A person with a past history of NTM pulmonary disease has about a seventy five percent chance of relapse of their NTM pulmonary disease and or acquiring a new NTM pulmonary disease with a different NTM species. There are steps to help prevent a relapse or reinfection they are as follows; switching to bottled spring water, limiting showering in enclosed spaces or shower stalls, turn up the temperature on home water heaters, avoid public hot tubs and public swimming pools, avoid private hot tubs and private swimming pools that are not properly chemically maintained, avoid home and public sprinklers, and boil all water that is used for cooking or drinking. However boiling water to get rid of NTMs can actually aerosolize the NTMs so use caution when doing so. Indoor air quality can also affect exposure to NTMs.

PCD increases the risk or vulnerability to NTMs, and having PCD with Bronchiectasis considerably increases the chances of contracting a NTM pulmonary disease. NTMs enter the lungs through the environment, and most people can clear the NTMs with the help of the cilia. In PCD where ciliary function is oftentimes limited or nonexistent NTMs can hang out in the lungs for huge amounts of time; which is what puts PCD patients at greater risks from NTMs. Due to the nature and disease progression seen in PCD; NTM pulmonary disease can and is often missed due to Bronchiectasis, pseudomonas, and lung cavitation due to pneumonia or other organisms often seen in PCD patients. According to current research the most common NTM pulmonary disease in PCD is MAC. Only about thirteen percent of PCD patients end up with M. abscessus pulmonary disease. Treatment of NTM in PCD patients is extremely important when considering that end stage PCD, in advanced PCD cases, leads to lung transplantation. If a lung transplant patient has a prior history of NTM lung disease it is important to retreat the patient for NTM pulmonary disease after transplantation. The goal of retreatment is to prevent any NTMs that have colonized in the body or are just hiding out elsewhere in the body from infecting the new lungs. Lung transplant patients with NTM pulmonary disease have a higher mortality rate than lung transplant patients without prior NTM pulmonary disease. Relapse rates for NTM pulmonary disease in PCD patients is as high as eighty percent according to some researchers. One final and interesting note on NTM pulmonary disease, that has specific implications in PCD, is study observations have revealed that women may be more susceptible to NTM pulmonary disease, because of the practice among women to cough quietly and covertly. The suppressing of the clearance of mucus for privacy sake appears to directly correlate to increase risks in NTMs and other organisms.

Be sure to visit us next week for another Topic Thursday!

Join our Facebook group Turtle Talk Café today, click here.

We have several ways that you can donate to PCD Smiles;

- Visit Smile E. Turtle's Amazon Wishlist; https://www.amazon.com/hz/wishlist/ls/KNO9BAJR74I4?ref_=wl_share

- For more information on how you can donate, please visit our "Donation" page to check out our "Do & Don't policies at; https://pcdsmiles.com/support-pcdsmiles/donations2

- To sponsor a PCD Smiles Cheer-box today!

https://store.pcdstyle.com/21-donations

- To shop for your “Official” turtle care ribbon gear today!

www.pcdstyle.com

or

https://www.smileecove.com/stores/cove

Thank you for your consideration!

#PCDsmiles  #PCDstyle  #PCDsmilesCookbook  #PrimaryCiliaryDyskinesia  #SmileEcove  #TurtleTalk  #TurtleTalkCafe  #PCD

#PCDawareness to help find a #cure4PCD!

Ototoxicity; Auditory & Vestibular Injuries

 What is Ototoxicity? Ototoxicity is basically ear poisoning. The damage in ototoxicity occurs to the inner ear specifically the cochlea or auditory nerve, and oftentimes the vestibular system. Ototoxicity is caused by pharmaceutical drug therapy a majority of the time; including the use prescription medications, over the counter medications, and even supplements. Ototoxicity causes hearing loss and balance disorders; which can cause serious social, communication, and educational issues. The risks of developing ototoxicity is dependent on several factors including use of other ototoxic drugs at the same time, which ototoxic drug is being used, how long the ototoxic drug is being used, and several other factors including but not limited to kidney function. Ototoxicity seems to occur more frequently in adults than children, but those numbers are skewed based on unreliable reporting of ototoxicity instances and the inability of some children to accurately describe their situation to their caregivers and their physicians. Some patients are more susceptible to ototoxicity based on prior frequent usage of ototoxic drugs, their unique genetic factors, and their need to use more than one ototoxic drug at a time based on their unique overall health picture. Furthermore; ototoxicity caused by antibiotics can be and more than likely is permanent, whereas ototoxicity caused by drugs other than antibiotics can be and is most likely temporary.

The term cochleotoxicity can be used to describe the damage done to the auditory system by ototoxic drugs. The damage done to the cochlea can cause complete deafness, hearing loss in the high-frequency range, or hearing loss in any of the ranges in between. Inconsistencies in the data reported regarding coch;leotoxicity make it virtually impossible to pinpoint actual frequency of cochleotoxicity associated with specific drugs. However; “the relationship between cochleotoxicity and drug administration parameters such as dosage, duration of treatment, and serum concentration is highly variable (Barza & Lauermann, 1978; Fausti et al., 1992b; Fausti et al., 1993; Schentag, 1980).” Basically, a physician should not rely solely on lab work and dosage scales to predict a particular patient’s risk for ototoxicity. Hearing screenings and assessments remain the only reliable method for detecting cochleotoxicity. Hearing screenings should be conducted prior to the start of an ototoxic drug to establish a patient’s baseline, and continued hearing screenings should be conducted simultaneously during treatment with an ototoxic drug; at least every three months during treatment. Additionally; it should be noted the ototoxic drugs should not be used as ear drops because the ototoxic drug might diffuse into the inner ear when the tympanic membrane of the inner ear is perforated which increases the risk of ototoxicity.

 The term vestibulototoxicity can be used to describe the damage done to the vestibular system by ototoxic drugs. Many physicians do not understand the risk of injuries to the vestibular system from ototoxicity, nor do they seem to appreciate the devastating effects of ototoxicity injuries to the vestibular system. Symptoms of vestibulototoxicity can include disequilibrium, oscillopsia (the perception that viewed stationary objects or surroundings move in harmony with head movement), vertigo, difficulties walking in low light, difficulties walking in darkness, and many other symptoms. Each of these symptoms is related to balance. Simply put; the mind is confused with the direction of motion or lack of motion, and therefore the patient has difficulty seeing and processing images. That is what often leads the patient to describe the feeling of dizziness and wooziness. If the symptoms of vestibulototoxicity appear severe, they will most likely not dimmish over time, but instead will most likely be permanent. The onset of vestibulototoxicity can be sudden or gradual depending on the damage that was done by the ototoxic drug. Additionally, asking the patient to contact their physician at the onset of symptoms is not helpful in monitoring for vestibulototoxicity; as patients do not seem to recognize the exact onset of symptoms with regards to vestibulototoxicity.

 PCD or Primary Ciliary Dyskinesia where prompt treatment of infection reduces the risks of progression of the damage done to the body by PCD, puts the PCD patient at higher risk of instances of ototoxicity. Also the likelihood of a patient with PCD culturing rare or unusual infections in their lungs, ears, or sinuses such as pseudomonas aeruginosa, enterobacter species, and nontuberculosis mycobacterial lung infections also increases the risk of ototoxicity to a patient with PCD. This is due to the fact that these types of infections require the use of an antibiotic from the aminoglycoside family. Antibiotics in the aminoglycoside family include gentamicin, tobramycin, streptomycin, amikacin, netilmicin, neomycin, dihydrostreptomycin, kanamycin, ribostamycin, and vancomycin. “Aminoglycosides are among the most efficacious antibiotics used to treat serious Gram-negative infections (Forge and Schacht, 2000).” Approximately ten percent of people taking aminoglycoside antibiotics experience ototoxicity, although up to thirty-three percent has also been reported in adult patients; again these numbers are most likely skewed due to unreliable reporting of instances involving ototoxicity and aminoglycosides. However; aminoglycosides are well known for their potential to cause permanent hearing loss, tinnitus, temporary increase of hearing followed by gradual decrease in hearing loss, permanent vestibular loss, permanent vestibular sensitivity, and or vision issues. Hearing loss onset due to ototoxic drugs can occur after the very first dose, after a few days or weeks, or even several months after completing aminoglycoside therapy. Aminoglycosides given intravenously (by IV) increases the risk of ototoxicity for any patient, not just PCD patients. Whereas aminoglycosides administered by inhaling them using a nebulizer reduces the risk of ototoxicity for any patient, again, not just PCD patients. Furthermore, recent studies indicate that infections that cause systemic inflammation greatly increases the risks of aminoglycoside induced cochleotoxicity. Researchers hope to include that knowledge in future models that are used to predict comorbidity factors and their risks of predisposing a patient to ototoxic drug induced hearing loss. Unfortunately antibiotics from the aminoglycoside family are a necessary evil in the effort to treat infections in PCD and slow the progression of PCD.

 The signs and symptoms of ototoxicity are often dizziness, uncoordinated movements, oscillating or bouncing vision, tinnitus or ringing in the ears, an unsteady gait, vertigo, and bilateral or unilateral hearing loss. If you notice any of these symptoms call your physician right away, don’t wait! You and your physician may need to discuss discontinuing the ototoxic drug, lowering the dosage of the ototoxic drug, finding an alternative drug, discuss the benefits of continuing treatment with the ototoxic drug, as well as whether the risks of the ototoxic drug outweigh the benefits of the ototoxic drug in your unique health circumstances. It should also be noted here that you should not discontinue the ototoxic drug, at the first sign of symptoms of ototoxicity, without first discussing the situation with your physician.

 The prevention of ototoxicity must be the focal point of managing treatment with an ototoxic drug, as most hearing loss is permanent when the ototoxic drug is an antibiotic. There are no treatments for ototoxicity. Instead efforts and current research projects are aimed at helping the patient cope with the side effects of ototoxicity, and minimizing the risks of potential ototoxicity from offending drugs while maintaining the ototoxic drug’s therapeutic qualities. The American Academy of Audiology recommends ototoxic monitoring to allow for possible prevention and detection of ototoxicity, as well as the rehabilitation of hearing loss through the use of cochlear implants or hearing aids. Physical therapy may help patients regain some balance and walking abilities, or at the very, least help the patient learn to compensate by learning to use adaptive mechanisms.

Be sure to visit us next week for another Topic Thursday!

#PCDsmiles  #PCDstyle #TopicThursday #PCDsmilesCookbook

Be sure to visit us next week for another Topic Thursday!

Join our Facebook group Turtle Talk Café today, click here.

We have several ways that you can donate to PCD Smiles;

- Visit Smile E. Turtle's Amazon Wishlist; https://www.amazon.com/hz/wishlist/ls/KNO9BAJR74I4?ref_=wl_share

- For more information on how you can donate, please visit our "Donation" page to check out our "Do & Don't policies at; https://pcdsmiles.com/support-pcdsmiles/donations2

- To sponsor a PCD Smiles Cheer-box today!

https://store.pcdstyle.com/21-donations

- To shop for your “Official” turtle care ribbon gear today!

www.pcdstyle.com

or

https://www.smileecove.com/stores/cove

Thank you for your consideration!

#PCDsmiles  #PCDstyle  #PCDsmilesCookbook  #PrimaryCiliaryDyskinesia  #SmileEcove  #TurtleTalk  #TurtleTalkCafe  #PCD

#PCDawareness to help find a #cure4PCD!

  

 

Tissue Troubles

  Facial tissue, toilet tissue, handkerchiefs, pocket squares, boogie wipes, kleenexes, whatever you call them! Having a place to blow and wipe your nose is so important when living with PCD! Because of the amount of mucus clogging our noses, blowing and wiping is happening all day and night, and finding the tissue for you is a big decision.

 

I have tried many many tissues in my life, and they are not all created equal. From sleeves and banana leaves to basket balls and my grandmother’s shawl, I think I have tried it all. So go grab your tissues, as I tell you the tales of finding the perfect tissues!

 

Now, there are a few key components to finding the perfect tissue:

1- Availability

2- Texture

3- Residue

4- Strength

 

Now availability is important. You may not always have your own tissues on hand. Especially when you're a kid. There were so many times as a child where I was on a franic hunt for tissues.

In friends’ and family’s houses who, unlike mine, did not keep a box or two in every room of the house or car. I have been offered many whataburger napkins from the trash on the floor, old receipts from the gas station, or worst of all, wet wipes- maybe it's just me, but wet wipes burn the heck out of my nose-. Eventually they would get tired of finding a creative solution for the poor snotty kid in the back seat, and start keeping tissues in their car.

 

At the pool, waterpark, or lake, basically anywhere there is water can become an issue for kids in need of a tissue. Currently, as an adult I now have a little waterproof fanny pack for the few times I am in the water, but this has not always been available! So, what did I do growing up when I needed a tissue in these situations? Well, my mom would get creative.

 

I have a vivid memory of being at a waterpark one day with my mother. We were in a tube going down a long, slow slide. While she usually has her purse with her, stocked with tissues, you are not allowed to take your items with you on the slide. So, when less than half way through, I let out a big frothy sneeze. There were no tissues insite... or so I thought. My mom takes one look around and spots a bunch of bushes and trees next to this slide. She reaches out, and in one long swoop, grabs a banana leaf from a tree, sticks on my face, looks me in the eye, and commands that I blow! While I would NOT recommend random foliage as a tissue choice, it definitely works in a pinch. I’d like to say that this was the only unconventional thing I had to use for a tissue, but then I wouldn’t have the story of when a basketball was the closest thing that could rescue me.

 

Down where I am from, basketball is our football. From a young age we are indoctrinated into the sport. One of the things that they do is, at the high school homecoming game, have the elementary students perform a basketball routine for the halftime show... 30-50 kids all doing basketball tricks and dancing in-sync to that year's most popular song, it was a sight to see. Especially when you notice that the girl with the pigtails covering her runny ears, also has snot running down the sides of her face. At that age, there is no hiding tissues in your braw and the uniforms definitely did not have pockets. So with about five minutes left in our routine I wasn’t sure what to do. Everyone would notice if I left, or if I moved in a way different than those around me. So little Jewelia got creative, and when it was time for all of us to spin with the basketballs in our hands, I took the chance, with my back turned towards the crowd for less than two seconds, I pulled that basketball to my face and wiped it across my nose... I only had one shot, and it was a slam dunk! I have always wondered though, if the kid who had the ball after me noticed that it was not wet with sweat... What can I say?... Kids are gross.

So, while there will not always be tissues everywhere you go, my childhood taught me how important accessibility is! With that in mind, toilet paper has been my savior. Once I realized I could use it for more than just my B-U-T-T, my life got a lot easier.

 

Now for criteria number two... TEXTURE. There are so so soooo many different types of tissues out there: smooth, patterned, wet, dry, ultra soft, moisturized, cooling technology, cotton, recycled. Everyone has their own preference, and for me I need something soft and not smooth. I wipe my nose so often that if I have a rough tissue then it will not take long until my nose is bright red, sore, and possibly even bleeding. So soft to the touch is important, but if it is a perfectly smooth tissue, it is too hard for me to get a solid grip on my nose, some tissues are so soft and smooth, they glide right over my nose before I can get a proper squeeze going! So when picking out my tissues I always look for something with a pattern printed on it. Things like flowers, little dots, or sometimes a brand name is a pretty good indicator that the tissue isn't going to just slide right off my nose! For an average person this isn’t usually a big issue, but with the amount I blow my nose, the skin is buffed as smooth as a wet marble floor, and I need something with some traction.

 

Now a huge one for me is RESIDUE! I put this third instead of first only because it does not affect my ability to properly blow my nose, instead it bothers the ever living hack out of me!

 

To me, nothing beats a box of fresh original tissues, before companies started getting fancy with it. Now everything is “infused” with one thing or another; Lavender, honey, aloe vera, menthol, essential oils, ect. These are great and all, but I do not think they had people with PCD in mind. For the average human who only blows their nose a few times a day, these additives probably feel great on their skin, but for those who blow their nose a few times a minute, this gunk builds up. Have y’all ever heard of the 100 layer challenge? If you haven't, here is the gist of it; You get some make-up, nail-polish, hairspray, etc., and apply it 100 times over the same spot. A couple coats of nail polish is normal, but after applying 100 coats to the same finger you have a few inch tall monstrosity. Now that is what is happening to me with these tissues, I am completing the tissue 200 layer challenge everyday, and I haven't even gone viral!

 

Last but not least is strength. Nothing is worse than going to blow your nose and ending up with a handful of snot, because the tissue broke mid blow. Now, I put strength at the bottom of the list, because you can always stack them. So regardless of the tissue available, if it seems too thin, or brittle, then you can just stack the tissues on top of each other until it's thick enough for what you need. It's an easy fix, but still annoying. It is best to just find the tissue that has the right strength for you.

 

With all this in mind, you now know what you need to look for when picking your tissues. Everyone may not agree with this list, but for me it has been pretty handy. Now, for the moment you’ve been waiting for... What is my “perfect” tissue?... Angel Soft toilet paper!

 

1. It's easy to carry with, and a popular brand in my area.

2. It's got some printed texture on it, and leaves a good grip for my nose while also

being nice and soft.

3. It leaves almost no residue on my nose! It doesn't have any of that fancy stuff in

it, and almost never leaves little white fluffs on my skin,

4. It is strong enough that I can have a powerful sneeze and it wont rip, it's also

easy to stack and make thicker if you need to.

 

P.S. It also is perfect to have in an emergency bathroom situation.

So, what's your perfect tissue, and what criteria do you need it to meet?

 

Be sure to visit us next week for another Topic Thursday!

 

Join our Facebook group Turtle Talk Café today, click here.

 

We have several ways that you can donate to PCD Smiles;

- Visit Smile E. Turtle's Amazon Wishlist; https://www.amazon.com/hz/wishlist/ls/KNO9BAJR74I4?ref_=wl_share

- For more information on how you can donate, please visit our "Donation" page to check out our "Do & Don't policies at; https://pcdsmiles.com/support-pcdsmiles/donations2

- To sponsor a PCD Smiles Cheer-box today!

https://store.pcdstyle.com/21-donations

- To shop for your “Official” turtle care ribbon gear today!

www.pcdstyle.com

or

https://www.smileecove.com/stores/cove

 

Thank you for your consideration!

 

#PCDsmiles  #PCDstyle  #PCDsmilesCookbook  #PrimaryCiliaryDyskinesia  #SmileEcove  #TurtleTalk  #TurtleTalkCafe  #PCD

#PCDawareness to help find a #cure4PCD!