Monthly Archives: December 2015

Meds Take Role In Faking Wellness

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As I filled up two extra large medication planners this morning, one for morning and one for night to hold the 20 routine medications I take daily, I was cranky. I don’t like taking them. Some are expensive. Many of them stick in my throat due dryness associated with Sjogren’s Syndrome. Some of them hurt my stomach. Some of them make me feel dizzy and nauseated. Sometimes they don’t work!  I think to myself, “I’m not going to take them anymore!” Then the nurse rises up in me and says, “You will take your medication as ordered. You know better!” and the patient side of me who wants to throw the pills in the trash and run caves in to my more sensible nurse side.

Have you ever felt like stopping medication as a chronically ill person dependent upon your own personal pharmacy? I think you probably have. It’s normal. We don’t want to admit we have to rely on our medication regimens to get barely get by in life. Yet, throw a rebel fit and stop taking them for a day or two and suffer the consequences ten fold, right? Those 20 routine pills control a whole slew of chronic illnesses. Without these meds I quickly regress into a sloth that moans in pain without being poked, unable to get of bed.

I told a lady at church yesterday that I am a master at faking being well. I felt comfortable confiding that because she spoke the same language because she is finally coming into a autoimmune diagnosis of her own. The look in her eyes echoed mine. As I thought about that statement, it rang with resounding truth. How many of us are masters at faking being well? I suspect a large number of us are excellent actors!

I think we can attribute our academy award winning performances to our medication regimens. My medication does not control my symptoms as well as I would like, but for a few hours in the day I can fake being well to fit in socially. People like us, with autoimmune disease, understand the unwritten motto of the disease: You play, you pay (spoon theory).  The cost of faking being well is time spent resting. Going to morning and evening church services on Sunday wipes me out. I will spend all day Monday loafing between the bed and recliner too fatigued to do anything else. Throw a flare in there because I tipped the balance of play/pay (used too many spoons) and it’s ground zero. Can you relate?

In addition to the routine meds are the weekly and bi-weekly injections to slow the progression of rheumatoid arthritis, insulin injections, pain meds, muscle relaxers, ointments, balms, creams, gels, along with heating pads, hot packs, and cold packs. My bedside table and chairside tables are littered with prescriptions of all sorts. I have enough arthritic topicals to treat nursing home population twice! Try to take them away and I’ll tear your arm off! These medications promote my acting ability.

My name is Mischelle, and I am a faker at being well. Are you too?

 

 

 

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More Than A Sinus Infection

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Fall is always the worse time for my seasonal allergies. I snuffle, sneeze, wipe watery eyes, and tilt my head to clear my ears. Maybe you do too? I’d been snuffling for a month to clear the post-nasal drip and ended up with sinusitis, aka a “sinus infection”, but it was no ordinary sinus infection because of underlying disease.

Because I have multiple autoimmune diseases, I take both Methotrexate and Actemra injections to slow the progression of the disease. I am also a diabetic. Diabetes is a disease that often masks infection.  During the time of having the snuffles, I continued to take the aforementioned drugs which lowered my immunity considerably. By the time I realized my seasonal allergies had become a full blown sinus infection, it was too late.

I say that it wasn’t an ordinary sinus infection because I am not well. Most healthy adults can manage a sinus infection with minimal impact to their lives. In my case, the month of snuffling had caused congestion in the sinuses when coupled with the decreased immunity, turned into a infection. Not to be overly graphic, but the affected sinus cavities were packed with congealed mucus that contained pus and was too thick to drain effectively.  Sinus infections are not contagious. They often occur as a result of prolonged seasonal allergies. Sinus infections can either be bacterial or fungal. The bacterial type is the most prevalent among suffers of this illness which is why doctors typically prescribe antibiotics; however, if you are immunocompromised and have completed a round of antibiotics and still are symptomatic, you should consider that you have the fungal type of infection. If you have had multiple sinus infections, more than 3 in a season, then you have developed a “chronic” sinus infection which more than likely is fungal in nature.

It is very important to have a good relationship with your primary care physician (PCP). A PCP educated about autoimmune diseases like Rheumatoid Arthritis, will understand that a sinus infection in a immunocompromised patient needs prompt, aggressive action. Should that infection be prolonged, beyond the initial course of antibiotics the doctor should suspect that the infection could be fungal verses bacterial, requiring a different type of medication.

Do not leave your rheumatologist out of the communication loop. All drugs that impact immunity will need to be halted during treatment of an infection. Your rheumatologist or the physician prescribing your disease modifying drugs will give you a schedule to stop and resume your medications. Your rheumatologist can also work with your PCP to treat the infection.

In my case, my PCP recognized that I needed a strong antibiotic and decongestant to treat the sinus infection. I was given a course of Augmentin twice daily for 10 days and a liquid decongestant to promote drainage. All disease modifying drugs were stopped for the autoimmune diseases. My blood sugar readings soared out of range of the glucometer while my body tried to fend off this infection requiring  insulin injections in addition to the oral diabetic medications I take.  I had a fever of 102, hard chills, a sore throat, and difficulty breathing lying down ….. and then I flared. The infection triggered a monster flare that put in bed for three days. This domino effect of one illness causing other illnesses to skew is commonly the case with people with autoimmune diseases.

It’s not “just a sinus infection” that can quickly be recovered from while you continue with work, parenting, or daily activities when you have compromised immunity. Friends, family, and co-workers may not fully comprehend why you are so sick with because a sinus infection may be a routine illness to them that is a inconvenience for a few days. This can be hurtful. Be prepared not to have the severity of your symptoms acknowledged or understood by others.

It is exhausting to have to explain and re-explain your chronic autoimmune illness, but if you live alone, as I do, you need to make it a priority to have contact with at least one person who understands your illnesses or that you can educate about the severity of the situation so that someone is looking in on you when you do experience an acute infection. Any infection in an immunocompromised patient can quickly advance into something more serious requiring emergency medical treatment.

Skeptical? Sinus infections can advance to meningitis, infection of the bony structures of the sinuses requiring surgical intervention, and can even result in death. Consider this from medicinenet.com: “While serious complications do not occur frequently, it is possible for sinus infection to cause a direct extension of infection into the brain through a sinus wall, creating a life-threatening emergency (for example, meningitis or brain abscess). In addition, other adjacent structures can become infected and develop problems, such as osteomyelitis of bones in the skull and infection around the eye (orbital cellulitis). Rarely, these infections (mainly bacterial and fungal organisms) may cause death. The most susceptible individuals to complications are patients with suppressed immune systems, diabetes, and relatively rarely from multiple trauma injuries that may occur in natural disasters.”

The very nature of the disease modifying drugs we take can lower our immunity to the degree that a sinus infection can be a serious illness. Don’t ignore your symptoms. Seek early treatment.