Invisible Illness

*Baron & Budd Law Firm published this blog here:

As I was scrolling through my Facebook news feed, I came across a post from my friend Cheri:

“I was just told I need to take down my Facebook profile picture because I don't look sick and people might not think I'm actually sick.”

It is a sad fact that when you suffer from an invisible illness, people make judgments about your appearance and capabilities based on how you look. In their minds, if you don't look sick, you're not sick. That is a damaging assumption to make.

When you “don't look sick”, it's hard to explain invisible illness and Fluoroquinolone Toxicity to someone. Even when you explain it, you're still viewed with skepticism or a blank stare. The lack of understanding can lead to feeling isolated. Not only do you deal with an invisible illness, you start to feel invisible too because those around you can't- or won't- understand.

My friend Cheri Haddon, 26, from Conyers, Georgia took Cipro in 2011 for a urinary tract infection. She suffered immediate adverse reactions to it and has been disabled since then. When holidays come around, she cannot enjoy being with her family because she is so food and chemically sensitive. She can't eat the food that her healthy relatives can eat. She becomes sick for months just smelling someone's perfume or shampoo. She has endured insensitive comments from people around her because on the outside, Cheri “looks fine”, while inside, her body is screaming in pain and rebelling against her environment.

I took Levaquin in 2006 for a suspected sinus infection. Since then I have ruptured 9 tendons, had spinal surgery, developed peripheral neuropathy, tinnitus, vision changes, seizures, gastric problems, a neurodegenerative disorder, muscle wasting, arrhythmia,  brain fog, cognitive dysfunction, tremors, and I was diagnosed with another life threatening disease in November.

Looking at Cheri's photos, as well as mine, you'll see us smiling, being social with friends and family. But those photos don't tell the complete story. Hidden behind the smiles is body-wide pain, brain fog, nausea, dizziness, neuropathy, flaring tendons, fluctuating heart rate, and much more that you can't see. For the one second it took to take the picture, we manage to paint a smile on our face, masking what is really going on behind those smiles. A photo cannot possibly open a window into what we are feeling like on the inside, and what you don't see afterward is that it could take us days, weeks, or longer to recover from whatever was going on in that photo.

There is a photo of me on Facebook and in it my husband and I are having lunch with 3 other friends.

What you see:

• I am smiling.
• My hair is done.
• I am wearing makeup.
• I am wearing a nice sweater.
• I'm just another diner in a restaurant out with her friends, cracking jokes, listening to what her friends have been up to.

What you don't see:

• I am wearing enough concealer under my eyes that would rival Tammy Faye Baker to cover the dark circles under my eyes because insomnia has kept me up for 3 consecutive nights.
• The tremors in my hands made me drop my fork 6 times since I arrived.
• All of my joints are screaming in pain and the morphine I took before I left the house isn't touching the pain.
• My left foot is numb and my right foot feels like I stepped on hot thumbtacks.
• My cognitive function is poor and when I ordered my lunch, I switched words and the waitress didn't understand what I was trying to say.
• I am taking slow deep breaths in an attempt to calm my heart rate from arrhythmia.
• I am in panic mode because I couldn't remember if I took my seizure medicine that morning.
• Our table is near the table of the elderly gentleman who made a snide comment to me as I walked up the ramp to the restaurant because I can't do steps and he could.
• I would be bed-ridden to close to a week after the photo was taken.

There is a photo of Cheri on Facebook with her mom and her dog on her mother's birthday.

What you see:

• She is smiling.
• She is wearing a pretty sweater.
• She looks happy.

What you don't see:

• She is in pain.
• She is nauseous.
• She took her sunglasses off in the house long enough to take the photo and her eyes hurt because she is sensitive to light.
• She is having brain fog.
• This was the first time she was able to wear “real clothes” in 3 weeks because daily activities can be difficult for her.
• She was bed-ridden after the photo was taken.

Cheri's post about someone telling her to take down her profile picture because people won't believe that she is sick sums up what we face, even from people in our close circles. It shouldn't take a photo of us looking like we are on our death bed to convince people that we are, in fact, suffering from a terrible illness.

They say that a picture speaks a thousand words. I think it depends on who is reading it.

To someone who isn't chronically ill, Cheri's picture tells the story of a healthy-looking young woman bonding with her mother. A healthy person might say “Cheri, you look great, I'm glad you're all better”.

When I look at it, I can see the hallmark squint in her eyes which speak of pain from light sensitivity. I see that she is swallowing her pain. I see that it took a lot for her to get dressed and smile and participate so her mother could have a nice birthday. I see that she feels alone because she can't eat the same foods that her family can, and I see that she can't be in an environment that non-sick people can be in because she is so sensitive to chemicals, new furniture smells, perfume, etc. I see in the one second it took to take that photo that she is silently suffering. I see it because my smile in my own photos tell the same story of being chronically ill with an invisible illness.

In the one second it took to take the photographs of us, we got to look just like normal people, with normal lives, who are not sick with an invisible illness.

That's the difficult part of invisible illness. By outward appearances, you can't tell how much someone is suffering. Asking someone to take down a photo because it makes it look like you're not sick negates what we are going through. It implies that we should be posting pictures of ourselves crying, screaming, vomiting, gasping for breath, in the throes of a seizure, or limping so people believe that we have an illness and that we are struggling.

You can't see air, yet we believe you are breathing. You can't see pain, yet we believe you are hurting. So why is it so hard to believe that we are chronically ill with an invisible illness and we are just trying to survive the only way we know how?

The conversation about chronic and invisible illness needs to change. With invisible illness, not everything is as it appears.

Rachel Brummert

President/Executive Director

Quinolone Vigilance Foundation

www.SaferPills.org

Rachel@saferpills.org

Antibiotic Resistant Infections

Antibiotics are meant to help us feel better. We know the dangers of fluoroquinolone antibiotics such as Levaquin, Cipro, and Avelox but the over- prescribing of these drugs involve another danger: antibiotic resistant infections. These drugs have been used so widely and for so long that the infectious organisms the antibiotics are designed to kill have adapted to them, making the drugs less effective.

Each year in the United States, at least 2 million people become infected with bacteria that are resistant to antibiotics and at least 23,000 people die each year as a direct result of these infections. That is 23,000 too many.

Inappropriate use of antibiotics is a global problem that limits the effectiveness of antibiotics in treating bacterial infections. Bacterial infections that are resistant to the effects of antibiotics are serious and potentially life threatening.

A few antibiotic resistant infections are:

• MRSA (methicillin-resistant Staphylococcus aureus).

According to the National Institutes of Health (NIH), approximately one in 50 people carries a strain of staph resistant to common antibiotics. MRSA infections generally strike elderly hospital inpatients or nursing home residents. But according to the NIH, the number of MRSA cases out in the community is on the rise. It can spread between people working out at the gym through contaminated towels or equipment, and has even been passed between children at day care facilities.

• C. diff (Clostridium difficile)

C. diff is commonly found in hospitals, nursing homes, nurseries, and more. Spores can be found in bedpans, toilets, linens, phones, fingernails, floors, jewelry, remotes, central lines, and medical implants. Antibiotic resistance can put patients at risk for a C. diff infection, deadly diarrhea that causes at least 250,000 infections and 14,000 deaths each year in hospitalized patients. Decreasing the use of antibiotics that most often lead to C. diff infection by 30% could lead to 26% fewer of these deadly infections. These antibiotics include fluoroquinolones, β-lactams with β−lactamase inhibitors, and extended-spectrum cephalosporins. Patients getting powerful antibiotics that treat a broad range of infections are up to 3 times more likely to get another infection from an even more resistant germ. For more information about C. diff, please visit The Peggy Lillis Memorial Foundation at www.peggyfoundation.org.

• E.coli (Escheririchia Coli) and Salmonella

The bacteria behind food poisoning are becoming drug resistant, in part because farm animals are fed antibiotics to promote growth. In 2012, the Centers for Disease Control and Prevention (CDC) found that antibiotic resistant E. coli in have been linked to urinary tract infections can be traced back to antibiotics fed to farm chickens. E. Coli is the most common culprit in urinary tract infections. Once easily treated, urinary tract infections are becoming antibiotic resistant at an alarming rate. Europe has banned the use of antibiotics in animals. Sadly, the United States is way behind and this has become the subject of hot debates.

Sobering Statistics:

• More than half of all hospital patients receive an antibiotic. 
   
• The most common types of infections for which hospital clinicians wrote antibiotic prescriptions were lung infections (22%), urinary tract infections (14%), and suspected infections caused by drug-resistant Staphylococcus bacteria, such as MRSA (17%).
  

• About 1 out of 3 times, prescribing practices to treat urinary tract infections included a potential error – given without proper testing or evaluation, or given for too long.

• Doctors in some hospitals prescribed up to 3 times as many antibiotics as doctors in similar areas of other hospitals. This difference suggests the need to improve prescribing practices.
  

There is no doubt that antibiotics can save lives, but errors in prescribing decisions contribute to antibiotic resistance, making these drugs less likely to work in the future. Antibiotic resistance is an unavoidable, unwanted side effect of antibiotic use. To minimize the chances of antibiotic resistance developing, only use antibiotics when they are really needed. Bacteria have antibiotic resistance when they cannot be killed by an antibiotic. Remember it is the bacteria that are resistant, not you. Even very healthy people who have never taken antibiotics can become infected with antibiotic resistant bacteria from other sources.

Using antibiotics when they are not needed is an unnecessary risk. After taking an antibiotic you can carry resistant bacteria in your body for a long time. The resistant bacteria may not be making you sick, but can pass resistance to infection-causing bacteria later on. These infections are difficult to treat and may require hospitalization.

Infections cannot always be avoided but there are steps that can be taken for instances when it can be:

• Viruses are more contagious than bacteria. If more than one person in your family has the same illness, odds are it is a viral infection, and antibiotics would not be appropriate and will be ineffective.

• A doctor cannot tell, just by looking, whether a sore throat is due to a virus or to Streptococcus bacteria (Strep throat). A throat swab is the only way to know if antibiotics might help. Always insist on a culture before accepting an antibiotic. If one must be prescribed, always say NO to a fluoroquinolone.

• Fifty percent of children who have ear infections will still have fluid behind the eardrum after one month. This is not a reason to give antibiotics. Because of the risks associated with antibiotic resistance, children should not receive antibiotics to prevent ear infections. Prescribing an antibiotic as a preventative measure is inappropriate and risky, especially in the cases of fluoroquinolone antibiotics. More than 75% of children with ear infections will get better without antibiotics. Wash your hands frequently and teach your children to wash their hands because most ear infections occur after a cold.

• Select plain cleaning products, not antibacterial products. Antibacterial soap attacks all bacteria, both good and bad, and can cause bacteria to become resistant to antibiotics. Plain soap effectively removes bad germs from the skin without leading to antibiotic resistance.

• Disinfectants will kill 99.9% of germs on hard, smooth surfaces. They must be used at the right concentration and for the right amount of time to be effective. Disinfectants are not intended for use on the skin.

• Antiseptics are products that kill germs on the skin. Hand sanitizers are actually antiseptics. Be sure to use a hand sanitizer that contains at least 60% alcohol as the only active ingredient.

• Approximately half of the antibiotics prescribed for respiratory tract infections are inappropriate because most of these infections are caused by viruses. Antibiotics are useless against viruses. You can carry resistant bacteria in your body for up to two years. Do not use antibiotics for colds and flu and for most cases of bronchitis. Viral infections can make you just as sick as infections caused by bacteria.

• Sinusitis is caused by viruses up to 200 times more often than bacteria. A yellow or green drainage from the nose 2-3 days following onset does not mean you have a bacterial infection.

• If you have influenza (flu), stay home until you are feeling better and avoid going out except to seek medical attention. You put others at risk by not staying home. Fluids, rest and acetaminophen are the best way to treat colds and the flu. Although you will usually feel better in 4 – 5 days, it may take as long as three weeks to completely recover. Decongestants and cough syrup often contain acetaminophen. Always check labels or ask your pharmacist for help to avoid overdosing.

Hospital acquired infections are caused by a wide variety of common or unusual bacteria, fungi, and viruses. These infections can have devastating emotional, financial, and medical effects. Worst of all, they can be deadly.

They are not limited to hospitals. They can happen wherever patients receive medical care – outpatient clinics, dialysis centers, and long-term care facilities. As our ability to prevent hospital acquired infection grows, these infections are increasingly unacceptable.
Fortunately, the solution is clear. To prevent hospital acquired infections, everyone – you, your healthcare providers, and your visitors – should follow the infection prevention procedures described below:

• Speak up. Talk to your doctor about any worries you have about your safety and ask them what they are doing to protect you.
  
  
• Keep hands clean. If you do not see your healthcare providers clean their hands, please ask them to do so. Also remind your loved ones and visitors. Washing hands can prevent the spread of germs.
  
  
• Ask if you still need a catheter or central line. Leaving a catheter in place too long increases the chances of getting an infection. Let your doctor or nurse know if the area around the central line becomes sore or red, or if the bandage falls off or looks wet or dirty.
  
  
• Ask your healthcare provider if there be a new needle, new syringe, and a new vial for a procedure or injection. Healthcare providers should never reuse a needle or syringe on more than one patient.
  
  
• Prepare for surgery. There are things you can do to reduce your risk of getting a surgical site infection. Talk to your doctor to learn what you should do to prepare for surgery. Let your doctor know about other medical problems you have.
  
  
• Watch out for C. diff. Tell your doctor if you have severe diarrhea, especially if you are also taking an antibiotic.
  
  
• Know the signs and symptoms of infection. Some skin infections, such as MRSA, appear as redness, pain, or drainage at an IV catheter site or surgical incision site. Often these symptoms come with a fever. Tell your doctor if you have these symptoms.
  

You can help make healthcare safer and help prevent infections. They are not only a problem for individual healthcare facilities – they represent a public health issue that requires many people and organizations to work together in a comprehensive effort to attack these largely preventable infections.

Always be careful about taking an antibiotic. If you don't need it, don't allow one to be prescribed. Antibiotics, of course, have their place. Be vigilant about having your infection cultured to make sure there is a bacterial infection present. And as always, unless you are in a life threatening situation, ALWAYS say no to:

Oral fluoroquinolones:

• Avelox (moxifloxacin)
  

• Cipro (ciprofloxacin)
• Factive (gemifloxacin)
• Floxin (ofloxacin)
• Levaquin (levafloxacin)
• Noroxin (norfloxacin)
• Maxaquin (lomefloxacin)
• Penetrex (enoxacin)
  

Fluoroquinolone Eye Drops

• Besivance (besifloxacin)
• Cetraxal, Ciloxan (ciprofloxacin)
• Iquix, Quixin (levofloxacin)
• Ocuflox (ofloxacin)
• Vigamox (moxifloxacin)
• Zymar (gatifloxacin)
• Moxeza (moxifloxacin)
  

Fluoroquinolone Ear Drops

• Cetraxal, Ciprodex (ciprofloxacin)
• Floxin (ofloxacin)
• Xtoro (finafloxacin)
  

For more information about fluoroquinolone antibiotics, visit us at www.SaferPills.org.



Rachel Brummert
President/Executive Director
Quinolone Vigilance Foundation
Rachel@saferpills.org
609-575-9839

QVF Directors interviewed by Health Cosmos

Executive Director Rachel Brummert and Assistant Director Donna Schutz were interviewed by Health Cosmos. Please join QVF's Health Cosmos community to keep up to date on what we are working on.