5 Things Rheumatoid Disease Patients Wish You Knew

  1. A Rheumatoid Disease diagnosis leads to a double life. Thanks to new treatments, many of us have hours every day when we appear to participate in life just as you do.  There are also private hours spent soaking in Epsom salt baths, taking pain medications, going to doctor’s appointments and physical therapy, meditating, exercising, journaling, supporting one another online, wearing compression gloves and socks, applying cold and hot packs, applying menthol creams and patches, dipping our hands in hot paraffin, napping, taking hot showers, and wearing splints and braces, all to possibly have a few precious hours of normal, or as close to it as we can get.  Sometimes it works, and sometimes the disease rules our day and all we can do is rest and take comfort measures.  This aspect makes traditional employment challenging for Rheumatoid Disease patients, 60% of which are disabled within 10 years of diagnosis.
  1. Different than Osteo-Arthritis, Rheumatoid Disease is an auto-immune disorder that affects people of all ages, even children. Rheumatoid patients around the world advocate for “Rheumatoid Disease” to replace the term “Rheumatoid Arthritis” due to wide-spread misunderstanding.  Rheumatoid disease produces destructive molecules called fibroblasts that attack the protective lining around joints causing inflamed and shredded tendons, cartilage loss, and finally bone erosion.  That is the part you may be familiar with, but Rheumatoid Disease also causes:
    1. Costochondritis (painful swelling in the ribs)
    2. Uveitis (painful eye swelling, may cause vision loss)
    3. Pleurisy or interstitial lung disease
    4. Cervical subluxation and myelopathy (compression of the spinal cord)
    5. Kidney disease
    6. Atherosclerosis (heart disease), the leading cause of death in RD patients.

Educating health professionals about rheumatoid disease manifestations would facilitate early treatment of co-morbidities and delay disability.

  1. Even when symptoms appear controlled, Rheumatoid Disease marches on and adapts to treatment.  RD insidiously erodes cartilage and bone while patients feel perfectly fine, especially during the first 5 years.  Recent MRI studies confirm that even in clinical remission, there is inflammation around the joints, indicating a need for life-long treatment. The first RD medication I took stopped working after 4 years.  Currently, my rheumatoid antibodies are eleven times the norm after 3 years on an expensive biologic injectable.  Our super-immunity develops work-arounds to the medicine.  In the near future I will need to add a low-dose chemotherapy drug to suppress my immune response.  We will have to try other medications that may or may not slow the disease as my immune system keeps adjusting.  There are many RD Warriors who haven’t found a medication that works well enough, or who have run out of options.  One friend of mine injects herself every week for a 20% improvement in Lupus and RD symptoms.
  1. Rheumatoid Arthritis drug commercials exaggerate ability benefits and list a litany of risky side effects in a low monotone.  Actors appear in full remission without Prednisone moon-faces, but more than half of patients never achieve clinical remission for even a short period, and most medications help to a degree if at all.  Don’t get me wrong – I LOVE Enbrel because I can walk, fevers are less frequent, my pain is manageable, and I have little to no bone erosion.  While this miracle drug makes my life worth living, it doesn’t make running on a sandy beach or toting around a toddler on my hip possible.  More importantly, the medication doesn’t make working full-time possible because the disease is still active and unpredictable.  What it does make possible are life-threatening infections, which is why patients whose symptoms are fairly controlled often choose to risk joint erosion.  The risk-benefit ratio is tough to navigate, especially with the booming vitamin/supplement industry promising their own brand of remission.  Just like wrinkle cream promises, none are entirely accurate.
  1. We need you to help us spread the word. Rheumatoid Arthritis is one of the 6 most debilitating diseases in the world, yet the number of rheumatology research projects funded by the National Institutes of Health dropped by 52% from 2010 to 2014, while the number funded by private foundations fell by 29% over that period, according to data published by the Rheumatology Research Foundation (RRF).  A cure is on the horizon with new immuno-therapy breakthroughs, but funding is moving in the wrong direction.
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Vitamin & Herbal Supplements

Here in the 5th decade health gets real.  This is typically the decade when our bodies cry out for more attention and we listen because we want to stay for the whole party.  Vitamin and herbal supplements advertise benefits especially attractive to people seeking good health, better memory, more energy, and heightened immunity.  In 2015, U.S. consumers will spend 21 billion on vitamin and herbal supplements with no proof of positive benefits.  Not that there is shortage of research; there is plenty.  Once manufactured and put on the shelf, the FDA monitors herbal supplements for consistency, quality, and unsafe ingredients.  However, recent investigations of supplements sold by GNC, Target, Walgreens, and Walmart were found to include very little to none of the herbal listed on the bottle.  Each brand of herbal supplement is a unique cocktail, each company with their own recipe of leaves or roots or both.  These manufacturers are like the kid that passed off oregano as marijuana in high school.  Some people swore they got a buzz, and some people experience benefits from supplements that claim to get rid of a virus faster, lift depression, or help memory.  Lemon water, a long walk in the sunshine, and brain teasers may be just as helpful, but not nearly as quick.  Still others experience how ginkgo biloba lowers sugar levels or how ginseng causes anxiety or headaches.  Working with emergency room staff I learned how important it is for physicians to know all the supplements a patient takes due to drug interactions.  Often supplements have unintended effects when they interact with a prescription drug.  If you take a blood thinner, taking ginkgo biloba or vitamin E can make your blood too thin.  I have a hyper immunity which attacks the synovial tissue around my joints and causes inflammation throughout my body including my organs and brain.  Echinacea, Vitamin C, and other supplements that strengthen immunity promote my disease and work against the prescription medicine I take.  I prefer gaining benefits from anti-inflammatory herbs, like turmeric or cayenne, by adding these spices to recipes.  Doctors recommend getting our vitamins and minerals through good dietary habits, which again, is more time-consuming than swallowing a pill or three.  Preparing food is mindful self-care.  Many of us claim organic food is “too expensive”, but if we add the cost of protein supplements to that of herbals and vitamins, Americans spend more on supplements than on organic food.

Recent research indicates no benefits for adults taking multivitamins, citing they may actually shorten our lives.  So why does the mega vitamin and herbal supplement industry thrive?  I think it takes time to accept new information that argues with long-held beliefs.  Cigarettes and cocaine were once thought to be advantageous to our health, in large part due to expert advertising.  In Shape and Men’s Health magazines supplement ads cuddle up to healthy recipes and ab exercise programs.  Seniors taking Centrum Silver multivitamin are fit and ride bikes with their active friends.  Vitamins are the fountain of youth, which may be why we don’t want to let them go.

Two studies published last month in the British Medical Journal found no evidence that calcium supplements improve health or decrease bone fractures.  This is huge news for every woman who believes taking a combination of calcium and vitamin D helps slow bone loss after menopause.  Sadly, increased calcium in our diets does not make any measurable difference in bone density, either.  The National Osteoporosis Foundation recommends exercise for building and maintaining bone density and preventing falls resulting in fractures.  Exercise is also a prescription for better sleep, improved creativity, depression, and anxiety.

Aging healthfully is an evolving science, yet a consistent practice of exercise and good nutrition is guaranteed to keep us at the party as long as possible.

 

 

 

 

Knowing Your Boobs Could Save Your Life

On Tuesday, the American Cancer Society published new Breast Cancer Screening guidelines reducing the recommended frequency of mammograms for women over 54 to every 2 years and increasing the age for a first mammogram to 45 for women with an average risk of breast cancer.  They also kicked the clinical breast exam to the curb.  How much can a physician know about my boobs and my “normal” by feeling them once a year?  Now me, I can touch them every day if I want, and I certainly see them during my daily ritual.   Early diagnosis is key to beating breast cancer and many are triggered by women who notice a change in the look or feel of their boobs.  Our breasts feel differently in each decade.  Natural changes occur, especially as we bear children and get older.  Tiny, swollen, lumpy, I know intimately the phases my boobs passed through to land happily at soft tissue.  I know what my skin looks like, where there are stretch marks from pregnancy, and the color of my areola, however I need to use the mirror more often with arms raised.  Rashes, dimpling, or swelling also occurs in the breast tissue on our sides, and is more likely to go unnoticed.Breast Exam

The American Cancer Society is careful in its language, stating a woman should have the choice at 40 to request a screening mammogram and become educated on mammography limitations.  Women at high risk (20-25% lifetime risk) should begin annual screenings at 30.  They recommend breast MRI in conjunction with mammography for women at high risk because the two detect different types of cancer, so if I found a lump or had other breast cancer symptoms such as skin or nipple changes, my plan is to request both.  False positives are more likely with breast MRI, but despite the American Cancer Society’s concern about causing me ” a lot of worry and anxiety”, I prefer an unnecessary biopsy with a huge slice of peace of mind to later-stage cancer.  And despite a statement that self exams do not show a clear benefit, I trust my judgement on this one and will continue to feel myself up in the mirror on a regular basis because self-love is a beautiful thing and the new guidelines for breast cancer screening are not definitive, but leave the responsibility with me.

 

Leave Joe Biden Alone

U.S. media and the Democratic Party are propelling Joe Biden toward a 2016 presidential bid that he does not want, but why?  Joe cusses when he doesn’t know the microphone is on, calls for wheelchair-bound Senator Chuck Graham to stand up and let the crowd see him, and extends condolences to the Irish Prime Minister on his mum’s death while she is alive and well.   Joe Biden is not smooth; he is genuine.  They will rip him to shreds, every gaffe in Joe’s past revisited by the G.O.P., who mistakenly admitted the Benghazi investigation was a political move to degrade Hilary Clinton’s support.  With Joe’s more than 40 years of public service, they are  likely collecting mud already.  He is a t.v. producer’s dream.

And how will he hold up after all he has endured?  In true Irish fashion, I imagine he will give his honest opinion, as he usually does, however when faced with stupidity he won’t hold back.  Joe’s colorful rhetoric is yet another potential distraction from the very real American concerns about costly education and healthcare, job creation, immigration, justice equality, environmental conservation, and gun-violence.  I voted for Joe in the 2008 presidential primary, eight long years ago.  In September Joe said in a speech that he was unsure if he had the emotional reserves for a campaign and told the Democratic National Committee that his “heart and soul are pretty banged up”.  I believe him.  Beau and Hunter, Joe’s sons, survived a car accident which killed his wife and baby girl in 1972.  While recuperating from broken bones that put him in a body cast, 4-year-old Beau often laid next to his brother Hunter who had a skull fracture and said, “Look at me, Hun.  I love you.”  Beau sat his dad down two months before he died from brain cancer this year and made Joe promise that he would be o.k.  Joe says Hunter, his wife Jill, and loving family and friends are supporting him and he has to get up every day or he would be letting them down; he’d be letting Beau down.  If Joe decides not to run for president, he is not letting America down, he is letting his heart mend, something only time and care can accomplish.

Dismantling Fear

Beyond survival, fear lurks not only in the dark corners, but also in the joyful moments, waiting for an invitation to withdraw serenity and instill anger and sadness.  Fear often wears a disguise of concern,  uses ego as a henchman, and usually surfaces as “what if?”.  What if I express an idea and people reject it/me?  What if I look stupid?  What if I fail or make a mistake (and look stupid)?  What if an accident or an illness takes away someone I love?  What if my health declines?  Thoughts run in gangs and possess a mob mentality.  I desire an upbeat, kind, and intelligent gang of thoughts to hang out with, but how do I control non-essential fear, the bully of my gang?

Fear lives in the amygdala, our base emotional center, where fear conditioning occurs and unconscious evolutionary memories are stored apart from complex reasoning in the cortex and higher learning in the hippocampus, .  The amygdala soaks up sensory input from our experiences and assigns emotional tags.  In similar situations we may feel threatened, fear triggered by a smell, a room, a voice, or an action.  Wired to react quickly to fear, I can easily damage relationships or sabotage my work by overreacting or withdrawing, two perfectly reasonable fear responses.

The amount of fear hiding out in my amygdala is understandable, thousands if not millions of memory bits collected long-ago during  times of abuse and rejection.  Understanding fear is a biological process, evolving with our experience, re-frames unreasonable fear responses as manageable.  Desensitization can minimize or even destroy unreasonable fears using exposure and relaxation exercises.  A rise in blood pressure and cortisol dumps dictate a two-pronged approach with relaxation at the center.  I am not addressing a phobia, but an imaginary fear, so I begin by imagining my worst fear.  Creating a list of fears aids in choosing the biggest, baddest and most destructive fear bully.

I can pick apart my fear of rejection, imagining a rejection letter, a negative blog comment, or an in-person query regarding what I do all day.  I can imagine “what if?” and write the story to its end, even if only in my thoughts.  Imploding from shame does not happen in real life, so I survive to write, live, and love another day.  Using diaphragmatic breathing and a memory of Lake Huron’s waves lapping the shore helps me release anxiety induced by my imaginings.  I also use exercise to reset my brain and confirm I am alive and safe, even if I do look stupid.  I’ll repeat my exposure and relaxation exercises until looking stupid or being rejected is unimportant and what may happen holds no power.

“Don’t give in to your fears. If you do, you won’t be able to talk to your heart.”
Paulo Coelho, The Alchemist

 

 

Conscious Coupling, Because Divorce is Expensive

“Conscious uncoupling”, a descriptive term for a mindful ending where two people try not to rip one another to shreds out of hurt and disappointment. Perhaps “conscious coupling” will prevent the need for untangling ourselves, separating our lives.  It certainly seems worth the effort when I consider the life we built, the love we share, and the amount of money we do not owe.

We are consciously committing to the following habits, because neither of us is going anywhere so we may as well be happy.

  1. Hugging every day for at least 30 seconds.  Hugging bonds us, releases stress, and cultivates trust.  A good long hug wipes other thoughts away and makes us conscious in the moment.
  2. Habitually expressing gratitude prevents us from falling into a habit of taking each other for granted.  Every one likes to feel appreciated and partners contribute to our happiness in dozens of ways.
  3. Doing kind and thoughtful things for one another.  A phone call, a message, flowers, a back rub, a listening ear, a favorite dinner, a bubble bath, lit candles, there are a million ways to say “I love you”.
  4. Holding hands.  It tells the world “we’re together” and strengthens our bond.
  5. Playing board games.  We talk when we play a board game, we compete, we let someone else get ahead for the sake of keeping the game going.  Board games are sexy.
  6. And we cannot forget about sex.  Sex changed as we changed, and is not the star of the show as it was when we first fell in love.  What counts is connection.  If I am in pain or exhausted, that may consist of our feet touching under the covers.  If nurtured, intimacy grows,  eclipses good sex, and expands our comfort zone with that one, and only that one, lover.