I am Terminal

I had a conversation with a concerned mother about the word "Terminal". CF is in fact a chronic, terminal disease Something most of us do not want to hear. In the actual scheme of things we are all terminal, as no one gets out alive. Nonetheless, having a terminal disease, becomes hard to relate yourself with such a thing.

★I wasn't roughly 24 before I started accepting I had a terminal disease. I would say I had a "lung and digestive disorder", that it was a "lung illness", or that it was a "life threatening", or a "life altering disorder". I refused to say the word disease and never said terminal. I guess I was trying to deny the inevitable. Using other words, to comfort myself a little from the reality that Cystic Fibrosis is a chronic terminal disease.

A terminal disease is a medical term popularized in the 20th century to describe a disease that cannot be cured or adequately treated and that is reasonably expected to result in the death of the patient within a short period of time. This term is more commonly used for progressive diseases such as Cystic Fibrosis. In popular studies, it indicates a disease that eventually ends the life of the CF.

By definition, there is no cure or adequate treatment for CF. However, some types of medical treatments may be appropriate anyway, such as medications, nebulizers,  treatment to reduce pain or ease breathing.

Saying "I am terminal" is a mountain for anyone to climb, because the reality of it all is rather scary. No one wants to think they are terminal, especially if it is your child. It is very hard to grasp and see for yourself.

★The one beneficial thing, although we are still terminal, we are beating the odds with living longer, having better medications, treatments and living out our dreams. Keeping us here longer than we should have been.

However you want to look at the disease may it be a "condition", "illness", or "disorder" never brainwash yourself into thinking that you are not actually terminally ill. Don't push meds off to be "normal" or hide somewhere to take your meds so you don't stand out.

Educate everyone on your disease. Make sure you know everything that is going on. The good, bad, and reality of your disease. 

Just because CF is a terminal disease does not mean you have a death sentence. The doctors have no idea on how long we will be here. Only educated guesses that they are normally wrong with. So live! Do not act like CF is the death sentence that it once used to be. Prove everyone wrong and have the time of your life with everything you do!!

★Each one of us is different and we handle our CF differently. If you do not want to say that CF is a terminal disease, there is nothing wrong with it. One day you will need to open your heart and realize the underlying disease.

No matter the language or terminology used, remember one simple thing, one word doesn't change anything about who we are or how we live our lives.

I am terminal and awesome!
   Sandi

For more information, tips, or my adventures with CF like me on Facebook

Never give up!

What we do in life reflects us mentally as well as physically. For a CFer the more we do the healthier we are. The more we keep moving and always having something to keep you busy the better you will feel.

★ When my lung functions were in the high 80's I was a very active child throughout elementary and high school. I was a cheerleader, held several jobs, maintained being active in school clubs, and volunteered at nurseries, elderly facilities, the soup kitchen, homeless shelters and other ways to give back.

★ When my lung functions dropped drastically into the 60's I was in college. I was still a get up and go kind of girl! I worked at Applebees, American Eagle, and River City Grille as a bartender. All while being a full time college student, and active sorority sister. I was living on my own and paying my own bills and managing my diet, meds, and medical needs every day. I will admit it was HARD but I did it.

★ Then I dropped to the 40's in California. I was modeling at this time along with working. I was getting up daily at 7 in the morning. I would be modeling during the day, and yes I was paid. Then at 4pm I needed to be at work, a small military bar. I managed to get things ready to go for military get togethers, the going away parties I held and threw for fellow Marines leaving the Corps. Along with volunteering in my spare time.

★ Moving back home was a drastic change for me. Switching from the married military life to slow and steady small town life. My lung functions dropped down to the 30% and that is where I am today. I have my own nonprofit organization that has nothing to do with CF. We focus on ALL forgotten diseases, spread awareness, and I volunteer for any and everything I can. I am planning a wedding, in the midst of writing a book. Keeping up the blogs and FB posts for all of you in hopes to help at least one person a day when it comes to CF. Being an AMAZING writer and talent scout for the magazines I work for. Being a dedicated soon to be wife to my man. Making him the first priority after CF. Still managing to volunteer every chance I can while attempting the modeling thing again.

With all of that said I am a little jealous and worried about some CFers. I do not understand those who have higher lung functions can complain and just sit around and wait to be sick. All of that complaining and waiting is simply going to let your life pass you by.

★ Every Cystic is different and not all of them are as "upbeat" as I am and I know how hard it can be living day to day having CF. We really need to overcome some of the downfalls of CF and try to have something better, something people will remember you for. Strive to be great and greatness will be upon you!

I understand each Cystic reacts to things differently. My 60% may not be your 60%. However, please get out there. I have seen it so many times where people just stop living when they get to a lower lung function and that's not the case. Just because you will need to work your body a little harder, shouldn't be a reason to crawl into a turtle shell and never come back out.

Don't say you want to do something, do it!
   Sandi

For more tips, help, or information please like me on Facebook!

Tattoos & CF

Tattoos are becoming more and more mainstream by the minute. By the time I am old and gray most of the elderly will be sleeved out. What used to be a staple behind saliors, gangs, and prisons have become an addiction for soccer moms, preacher's wife, and muscle bound men! Even so, does that mean that they are medically cleared? 

Has your doctor tried to turn you away from tattoos? Being that Cystic Fibrosis is a genetic disease that makes our immune system very susceptible to infection is there a method behind your doctors madness?

First, you would automatically think blood mixing with the ink seems to be a bad idea. Could it interfere with your blood work or even X-rays? When the ink is properly put into the skin, it should never be deep enough to affect your blood system. 

★This is where common sense comes into play. Being that you are diagnosed with CF or any other medical disease that can compromise your health you need to take precaution with everything you do not just tattoos.

Make certain you are healthy before scheduling a tattoo! If you already are under the weather you are risking an infection in fact asking for one. If you start feeling a flair coming on, which we can all tell, let your tattoo artist know and reschedule! They would rather you be safe than sick, as long as you reschedule. Don't be an ass and schedule and then never go in, that is just wrong and unprofessional. Tattooing is a highly respectable profession these days and it takes a good deal of time to prepare for your tattoo. 

★Make sure to scout your tattoo artist and shop! If they are NOT legal or are kitchen magicians use your brain and DO NOT GET INKED!

Every shop in the US must be certified, inspected, and up to code when it comes to tattooing regulations and laws required by your states health department. Google, Bing, Facebook stalk, do everything in your power to make sure your artist has a good reputation before getting a tattoo. You can even go directly to the health department and see complaints, health scores, and standings. The shop should have an autoclave which is a device for sterilizing equipment. Make sure the artist uses a new, sterile needle with every tattoo. Along with putting on a new pair of gloves when you sit down and changes them after every break!

★PICC lines, ports, IVs, or blood draws will not mess up your tattoo. This is a question I have seen often. If for some reason your scar tissue grows over the insertion site, almost every tattoo artist has a policy for lifelong touch ups. A small touch up will not hurt you or your tattoo and normally requires a whole ten minutes to do. If you admire your ink and the tiny white scar bothers you it is worth a quick fix!

If your doctor tells you that because you have CF, post transplant, or are listed on the transplant list that you can not get a tattoo, they are full of it and simply do not like the idea of tattoos in general. This should not stop you from getting what you want. Remember, it is your body and your skin to decorate.

★Is there risk of infection? Yes! Is there a risk of the ink rejecting? Yes! This is true for anyone seeking a tattoo CF or "healthy" there is always a risk when doing anything foreign to your body.

The important things is knowing what to look for, how to take care of your tattoo, and making certain to pay attention to any and all changes in your skin, body, and temperature.

★Risk of post transplant infections with tattooing is possible, but not likely if you go to a legit tattoo artist and take proper care of yourself and your tattoo. Keep in mind all of us are different.

One thing people with lower immune systems seem to do is over wash the tattoo. The more you wash it the more you expose your tattoo to the elements outside of your body. This actually works against you although it seems it should be the other way around.

Taking care of your skin immediately after getting a tattoo can both prevent infection and help keep it looking great. While specific instructions vary from shop to shop, here are the basics.

★After getting your tattoo, take off the bandage as soon as you can get it home and in a clean atmosphere.

★Remember to wash your hands with antibacterial soap and warm water each time before touching your fresh tattoo. 

★Wash the tattooed area with a non scented antibacterial soap. Pat the tattoo dry with a clean cloth or paper towel. Never rub, scratch, or be rough with a new tattoo.

★Let the area dry for 5 to 10 minutes. Then apply a very thin layer of Bacitracin, Aquaphor, or other TATTOO related ointment. A little goes a long way.

★Repeat the washing, drying, and moisturizing process no more than three times a day for four days. After the fourth day you can switch to a moisturizer. Keep your tattoo as moist as possible for the next five to six weeks. 

Having CF and lacking the proper amount of sodium we dry out quickly so keep moisturizing at all times to make sure healing is done correctly.

★Call your doctor, not the tattoo artist if you notice redness or swelling after a few days, if you have a fever, or you discover a rash on or around the tattoo. Being a Cystic you want to make sure to get to your doctor just to be safe!

Keep in mind that yes, tattoos are painful, all the same, if you can handle a PICC line, central line, PORT, or blood draws every night in the hospital, you can handle a tattoo. Tattoos are something you want IVs are not so the pain is entirely different.

Do not get a tattoo if you truly do not desire one. It is up to you and only you as to how and what you do with your body! Not a doctor, parent (if you are older than 18), or friend can tell you what you can and cannot do. They can only advise you not to do things. 

Please remember to think before you ink it is forever. Be responsible, smart, and use common sense!

★Remember, each Cystic is different we all respond differently to everything even pain. One person's story may not be the same as any other. Tattoos may not be your cup of tea and there is nothing wrong with that! 

It's forever,
  Sandi

For more information about CF, hints, tips, or me being goofy like me on Facebook!

Sleep & CF

I've always had dark circles under my eyes and have just thought it was lack of vitamins or I wasn't getting enough sleep. Then I came acrossed a FB sign that made me research more. Because we all know, everything you see on the internet is true.

★Did you know our sleep patterns actually are affected by Cystic Fibrosis?

According to my research the reason is actually simple. With our lungs needing to work harder than the average person we are actually getting less sleep. Patients may be predisposed to poor sleep quality due to upper and lower airway complications.

Resulting in fatigue, loss of REM sleep, lack of memory, reduced lung functioning, learning disability, language dysfunction, mood swings, and sometimes even lower intelligence. Due to lack of oxygen being transported to your brain properly.

★I am the first to admit I have chunks of my life I simply do not remember, when I don't sleep well, I will bite your head off if I feel the need to, and my learning curve lets just say is not at the highest.

The more severe your CF the greater the impact with sleep can be. Making oxygen levels drop during sleep without you noticing right away. Which can be scary yet nothing to worry about right away and is fixable.

— Adding oxygen can help with your O2 levels and helping with sleep amung CFers.

People with CF breathe a lot harder during sleep. This could be one reason why we have trouble gaining weight. For tips on weight gain please read Weight Gain and CF

★Something I would have never put together.

— Appetite is regulated by the interaction between metabolic and hormonal signals and neural mechanisms. In layman's terms these chemical reactions change if you are having trouble sleeping. These changes will effect if we are hungry or not. Making it difficult to want to eat the high calories we need to maintain weight.

★Ways to help with sleep patterns

— First, recognize that sleep is essential to good health and daytime functioning for anyone "healthy" or not.

— Maintain a sleep routine that maximizes the chance to sleep roughly 9-10 hours a night. With these complications we need extra sleep to keep up with everything our bodies go through daily.

— Make a regular bedtime and wake time, avoid caffeine, TV, computers, and other distractions at bed time.

★In other words, do not stay up at all hours of the night writing CF blogs. Guilty!

— Address changes of sleep or lack of sleep with your CF team.

★Lack of sleep in Cystics can also cause,

◦ Headaches after waking up.

◦ Excessive daytime sleepiness.

◦ High hemoglobin or heart problems.

★Not to mention the side effects of medications we take daily having an impact on our sleeping habits. For medication for a Cystic please read CF Meds & Nebs.

Important to remember sleep loss can have a significant impact on the quality of life, appetite and even possibly glucose control of a CFer.

Learning Everyday,
  Sandi

For more information on CF or my crazy life, please like me on Facebook.