LUPUS & CHEST PAIN

COSTOCON ... WHAT?

Chest pain should always be taken seriously.  Generally speaking, as a symptom, chest pain could point to a wide range of ailments.  But, when it comes to lupus, chest pain usually indicates serositis.  Serositis is among the list of 11 Criteria for the Diagnosis of Systemic Lupus; per the American College of Rheumatology (ACR).

According to the Lupus Foundation of America, serositis is inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis).

When I first experienced chest pain symptoms, it was about 3 years into my lupus diagnosis.  I didn't understand it, was I having a heart attack? The pain was intense and showing no signs of letting up.   After several weeks of this, I realized it wasn't going away and drove myself to the emergency room. In hindsight, probably not the best decision if it had been a heart attack.  But, I was pretty stubborn and didn't want anyone to know what I was going through.  I thought it might in some way cause my co-workers to doubt my abilities or question my performance.  Not what you want when working in law enforcement, your life could depend on whether or not the person next to you has your back.

PERKS OF HAVING CHEST PAIN?

So, the one perk to showing up in the ER complaining of chest pain is you go to the front of the line.  You're seen in about 60 seconds of arrival!  The downside is they're required to run the gauntlet of medical tests and you'll be there for hours.  My diagnosis:  pleurisy and costochondritis related to lupus.  At the time, I didn't know what either of these two words meant or even how to spell them; costocon .... what?

Costochondritis (pronounced kos-toe-khon-dri-tis) is inflammation of the cartilage where the upper ribs attach to the breastbone, or sternum.  Chest pain caused by costochondritis ranges from mild to severe.  Mild cases being the chest feels tender to the touch with some pain when you push on the sternum, or chest cartilage.  Severe cases cause unbearable chest pain which intensifies with your life and doesn't go away on its own.

At least now, I had an answer to the cause of my chest pain and I wasn't having a heart attack.  It's very difficult to describe chest pain to someone who's never experienced it.  Try to imagine an intense heaviness in your chest, a crushing feeling like there's a Bradley Fighting Vehicle (a tank) sitting on your chest; preventing you from taking a deep breath.    

According to the experts, costochondritis usually isn't persistent and goes away on its own.  Mild cases can last a few days/weeks and severe/chronic cases can last up to 1 year.  I kept clinging to the hope mine would dissipate and I could return to my normal activities.  I grew more frustrated and hopeless as the pain continued; my doctor ordered me out of work for weeks at a time on bed rest & I kept hoping it would end the pain cycle. At one point in my desperation, I tried steroid injections for the affected area.  Interpretation:  the doctor stuck needles (six of them) filled with a local anesthetic and steroid medication into the cartilage joints in my chest wall & sternum.  Did I mention my phobia of needles? Ouch!

Fast forward 15 years ..... I'm still living with debilitating chest pain as a chronic condition.  Unfortunately, my case was resistant to the usual treatment plan of non-steroidal anti-inflammatories (NSAIDs); but, I have found a way to manage it. 

My long-term care consists of the following:

• hot/cold therapy
• bed rest  
• physical therapy (gentle stretching for chest cavity, rib cage) 
• pain management
• lifestyle changes (avoid any exercise or activity that aggravates this condition; such as, lifting heavy objects, holding arms up to drive, coughing, lying on your left side, etc.)

(The chest pain associated with costochondritis is a common symptom of fibromyalgia.  Many lupus patients are also diagnosed with fibromyalgia.)   

 

DON'T IGNORE THE SIGNS

If you're having chest pain associated with lupus and/or fibromyalgia, please don't ignore it.  It's best to seek medical care immediately in order to rule out something more serious.  Even though costochondritis isn't life threatening, it can be debilitating and life altering.  The sooner you find the answer to your chest pain, the sooner you'll receive treatment.  

Have you had an experience with chest pain associated with lupus or fibromyalgia?  

             

LUPUS IN THE NEWS

Study Reveals Shockingly High Rates of Incorrect Lupus Diagnosis

In a recent report published by the Lupus Foundation of America (LFA), the American College of Rheumatology (ACR) convened at the American College of Rheumatology (ACR) Annual Scientific Meeting in San Diego, on November 3-8, 2017.  One of the many studies presented involved an LFA study of over 3,000 adults with lupus, which found that 46.5% reported being misdiagnosed with something other than lupus at the start of their search for answers to their symptoms.  In addition, over half (54.1 %) were told that "there was nothing wrong with them or that their symptoms were psychological."

According to the study, nearly 40% of those with lupus waited over 1 year from onset of symptoms to receive an accurate diagnosis.  This is in contrast to a previous study that showed it took almost 6 years from onset of symptoms to obtain an accurate diagnosis.  According to the LFA, these findings highlight the importance of continuing to provide medical education to primary and specialty health care providers about lupus symptoms.  There is an urgent need to shorten the time frame for obtaining an accurate diagnosis so that treatment can begin and reduce damage to vital organs; such as kidneys, heart, lungs and brain.  Damage caused by lupus increases the likelihood of developing long-term health complications, making early diagnosis crucial for people with lupus.

According to R. Paola Daly, Director of Research at the Lupus Foundation of America, "The results of this study will help us understand and in-turn, prevent the specific factors that lead to unacceptable delays in receiving a lupus diagnosis."  Also, as a result of this study, the LFA is seeking to identify the barriers that impede lupus diagnosis and ways to improve its accuracy.

Deja Vu

I don't know about you, but when I read this article I wasn't exactly shocked.  I thought, finally something is going to be done about it.  I recall how long it took for my diagnosis (over 2 years) and how many doctors and specialists I had to go through just to get it.  If I hadn't been persistent in my quest for answers, who knows how long it would've taken, causing untold damage to my organs. 

If you're like many of the lupus patients I've met over the years, at least one or more of the specialists you saw commented that your symptoms were all psychological; followed by, a suggestion you make an appointment with a psychiatrist.  As if just because you're a female complaining about generalized joint pain and unspecified muscle aches you must be making it up. Or because you don't "look sick" or your blood tests "appear within normal ranges" the only possible conclusion is not to believe the patient. 

In my experience, it was August, 2000, I'd just been told by my primary care physician (PCP) that she suspected lupus and or some other undiagnosed rheumatological disorder.  At this point in time, my ANA results were positive, along with the physical symptoms, and she referred me to a rheumatologist for further diagnosis and proper treatment.  My health insurance plan was a HMO at that time and I only had one choice for a rheumatologist.  After waiting over 3 months, I finally got an appointment.  The doctor spent about 15 minutes with me going over my history, blood test results and referral from my PCP.  I recall being very anxious to hear how we were going to proceed with treatment and how it would impact my law enforcement career.  I had a million questions.  Instead, the doctor looked at me with a very contrite smile and proceeded to tell me I didn't have lupus, nor any other disease, and all I needed to do was, "work out more".  I was mortified and shocked into silence, I didn't know what to say.  I was 36 years old, in peak physical condition, worked out 7 days a week, had a very physically demanding job on the FBI's Bank Robbery Squad, and was intelligent enough to know when there was something wrong with my body.

I returned to my PCP to discuss what the hell had just happened.  She proceeded to tell me that as long as I had a HMO plan that I would never receive the proper diagnosis and treatment for lupus.  She encouraged me to change my health care plan to a PPO and provided a few recommendations of rheumatologists in the San Diego area.  She'd continue to treat me and provide whatever support I needed.  I'll never forget thinking what a caring and amazing physician she is, going above and beyond to see that I receive proper treatment.  And what was wrong with the other guy, the rheumatologist that said I needed to "work out more"?  It seemed so transparent to me at the time, the potential cost of treatment was dictating whether or not he gave me a lupus diagnosis. Whatever happened to do no harm?  I was angry, frustrated and a few other expletives on how a medical professional of his training in the rheumatology specialty could allow him to treat a patient with such complete indifference.  His disregard for my health and the corresponding implications of not providing the lupus diagnosis and subsequent treatment plan was beyond my comprehension.

LESSON LEARNED

Ultimately, I found an excellent rheumatologist at Scripps Clinic, in San Diego; where, I received a diagnosis of lupus, fibromyalgia, costochondritis, interstitial cystitis, Raynaud's and Sjogrens.  There were a few other diagnoses added later on that I'll discuss in future blog posts; but, these were the foundation for my ongoing treatment plan. 

If you don't believe you're receiving the proper care from your medical professional team then keep searching for answers until you get them.  Gone are the days when you do whatever the doctor tells you to do; without question.  The responsibility has shifted to our shoulders to take charge of our own health care treatment plan.  I don't mean to imply you ignore the doctors advice, but if you don't feel you're being treated properly or the doctor isn't listening to your concerns, then you should pursue other options.

If I can pass on any advice, it would be to listen to your body and trust your instincts.  I knew something was wrong.  I didn't know what, but knew there was something very wrong.  It's not normal for a healthy, athletic young woman to have wide-spread arthritis in her mid 30's, or to have excruciating hand pain to the point she can't reload her Glock!

   

GETTING ORGANIZED IN 2018

TO KISS OR NOT TO KISS

Happy New Year!!

It's that time again, the new years eve festivities are over and reality sets in.  We make lots of resolutions to ourselves and make promises: to be a better person, exercise more, eat less, lose weight, go to church, etc.  What's your new years resolution?

As I look back over the years (before lupus), I've typically gone for resolving to take a vacation, spend more time with family & friends, exercise more or go on a date.  But, having lupus puts a whole new spin on things.  Living with a chronic illness can cause a lot of stress (actual and perceived stress) and make the simplest tasks seem insurmountable.

For example, last Thursday I woke up with a lot more pain and stiffness than usual.  My physical therapy appointment the previous day was a bit rough and I really just wanted to go back to bed.  I had a lot on my "to do list" and could already foresee it wasn't going to happen.  My hair needed washing (was way past its "sell by" date if you know what I mean), write a blog post and walk Giggles, my dog. On top of that, the cable guy was coming the next day to install new Internet service, which will allow me to blog bigger, better and faster; and the office needed to be decluttered and cleaned.  My current service provider, AT&T, has been so slow and unresponsive that I had to abandon my blog when I initially tried to go public, in 2016.  

From Bad to Worse

My day went from bad to worse when I heard a loud bang come from the laundry room .... uh, oh! That can't be good.  When I walked into the hallway, the laundry room was already filled with smoke, it was pouring out of every seam in the washing machine, there was a putrid electrical burning odor and it sounded as if someone had thrown in a bucket of wrenches and turned on the spin cycle! 

Note to self: don't ever leave the house with appliances running!  A fire could've easily started  and put me and Giggles in danger.

I wasn't wanting to add shop for new washing machine to my to do list; especially, on Dec. 30th!  That's not how I envisioned ringing in the New Year!  So, when life throws you a curve ball how you respond can mean the difference between having an emotional meltdown or maintaining your cool and taking action to resolve the problem.  And in the spirit of full disclosure, I did have to take a 2 hour nap first to avoid any potential emotional meltdown.  Then, my law enforcement training kicked in.  It's commonly known as KISS .... Keep It Simple Stupid!

It means go back to the basics.  Weed out all of the unnecessary "BS" and focus on what's really important.  Ask yourself, what's the mission?  What's your goal?  And all of the extraneous stuff or secondary details will disappear leaving you to focus on what's really important.  If it helps, consider putting it to pen and paper.  This will help you focus on one thing at a time and prioritize. 

We can't always control what happens to us or  prevent accidents from happening, but we can manage how we respond to them. 

Developing lupus and fibromyalgia was beyond my control, but now I have a plan on how to deal with it.  Sometimes, the unknown is stressful in of itself.  Having a plan of attack, or a go-to idea, can instantly relieve the pressure of the situation and make it clear on what to do next.

So, when you feel overwhelmed by your illness or circumstances you're in are out of control .....insert any scenario: doctor appointment, symptoms flaring, meds making you sick, overdue bills, kids need picking up from school, spouse out of town, can't afford your prescriptions, no food in the fridge, out of sick leave, dog needs walking, or when the washing machine catches on fire; just think four little letters.  KISS!
       
Lupus Brain Fog

The KISS concept is also very helpful when dealing with the cognitive symptoms of lupus.  Cognitive impairment, also known as brain fog, affects approximately 20 - 60% of people living with lupus.

Please join me in the next blog post where I talk about coping with the cognitive symptoms of lupus.

Just remember .....  KISS!

HAPPY HOLIDAYS!!!

Holiday Rush = Holiday Stress

Here's wishing everyone a Happy Holiday and Merry Christmas this year!!

Sometimes the best way to handle the holiday madness with all the extra pressure of shopping for gifts, getting together with friends and family, and your everyday obligations and errands; is to just take a break.  We forget how to just take a breather and enjoy the season.  Instead of trying to get everything done and becoming completely frazzled, take some time for yourself.  Whether it's just to close your eyes and put your feet up, go for a walk, meet friends for lunch, date night with your spouse, or have a mani/pedi, etc.; you get the picture.

All of these seasonal demands on top of managing a chronic illness like lupus, can have disastrous consequences.  Trying to do too much can physically wear you down and make you more susceptible to a flare-up of your symptoms.  Not to mention, the more people/crowds you're around the more germs and contagions you're exposed to.  Living with lupus means your immune system is compromised and the medications used to treat it, such as methotrexate, suppress the immune system even more.  When I was working in an office environment and even investigating in the field, all it took was a co-worker coming in with a cold and by the next day I'd developed an upper respiratory infection.  Which inevitably led to a lupus flare, back on a course of prednisone and out of work for weeks on end.  Each time it happened took something out of me that I couldn't bounce back from and ultimately led to disability.  

This month has been pretty chaotic for me with the launch of my new blog!  I've been out of the work arena for a few years and learning a new skill has been both exciting and exhausting at the same time.  Trying to manage the pain, fatigue and cognitive impairment issues has been a challenge; often spending more time than average to complete a task.  Especially, trying to work around nap time!  All the while, I've been going through physical therapy several times a week for the degenerative disc disease in my spine.

So, my point is that I'm going to take my own advice and just give myself a break!!  I wish everyone a safe and happy holiday season .... and Giggles and I are going to curl up on the couch with popcorn and a Christmas movie!!

WINTERIZING YOUR RAYNAUD'S

Patriotic Looking Body Parts?

Depending on what part of the country, or world, you live in can and will directly affect your lupus symptoms.  Extreme temperatures in the winter can exacerbate arthritis and arthralgia symptoms in your hands and feet, causing pain and stiffness.  As if you needed another difficult to pronounce syndrome!  Raynaud's Disease can occur in people living with an overlying disease like lupus.  As I mentioned briefly in my previous post "It's A Hot Chocolate Day", the onset of cold weather can aggravate your Raynaud's symptoms. 

According to the Lupus Foundation of America, about one-third of people living with lupus are also affected by Raynaud's Disease. Raynaud's Disease, or Phenomenon, causes the blood vessels to narrow and the affected body part, typically fingers and toes, will turn blue and white.  Personally speaking, I often will lose some sensation in my fingers and toes, or a slight numbness and they turn ice cold.  As the blood flow returns to my extremities, the fingers and toes turn bright red and will cause throbbing and tingling.  Kind of like a patriotic display of red, white and blue, on my fingers and toes!  It can range from just mild annoyance to being painful especially during the cold winter months.  And yes, it does get pretty cold in Atlanta!    

Here are my top 15 favorite tips for managing Raynaud's symptoms

1. Hold a cup of hot chocolate, soup, tea, coffee, cider, or just a hot mug of water with lemon!
2. Dress in layers for the outdoors - I start with a base layer of moisture wicking clothing, long underwear or tights, coat, gloves/mittens, ear muffs or fuzzy headband, scarf, thick socks, hiking shoe (keep feet warmer for when walking Giggles).
3. For indoors - wear lightweight gloves to do chores that put strain on your fingers; such as, vacuuming, carrying items, opening jars, and grabbing something from the freezer.
4. Soak feet and/or hands in warm water - don't use hot water.
5. Soaking in a warm bath each morning can help jump start your joints for the day.
6. Daily dose of gentle stretches or yoga can keep the blood flowing.
7. Avoid long periods of standing, sitting or any movement which constricts the veins and increases venous pressure.
8. While in the car, adjust heating vents for "upper" use on your hands; as well as, for "lower" use on your feet.
9. Keep an extra supply of socks, gloves, hat/scarf in your car in case of emergency (mechanical breakdown, stuck in the snow, etc.).
10. Don't smoke or expose yourself to a smoking environment.  Smoking narrows the blood vessels.
11. Maintain an optimal body weight and exercise regularly.  Low-impact activities such as walking, biking and swimming can improve circulation.
12. Stock up on hand and foot warmers - found at sporting goods stores.
13. Prior to getting into bed, I toss my pj's and socks in the dryer for 5-10 minutes.
14. It's a good idea to avoid or limit your use of power tools that produce a lot of vibration (electric hand mixer, power drill, etc.).  Personally speaking, my home renovating days are over!  
15. IMAK gloves - love them!  (See photo below)

IMAK gloves

IMAK Gloves

If you haven't discovered these yet, give them a try!  They are compression therapy gloves with the finger-tips removed so you can still use your phone, drive, write, etc.  I use them while driving and even when I'm blogging.  They provide gentle compression, or hug, to my hands and wrists while I'm writing.  There are a few different styles (with/without beaded grips) and come in different sizes.  IMAK gloves can be found at select local drug stores, or online at BrownMed.

They're useful as a liner under my heavier gloves for really, really cold days.  Also, I carry a pair of the beaded grips in my purse and a pair in my doggy go-bag; aka, Giggles go-bag!  

 

IT"S A HOT CHOCOLATE DAY!!

How come my tennis balls don't bounce?

SNOW DAY IN ATLANTA

As the snow began falling yesterday and throughout the night, I knew it was going to be an "indoor" day today.  Mainly because my joints prefer temperatures above 32 degrees.  Having arthritis and Raynaud's Disease, or Phenomenon, can cause a very painful condition to worsen the colder it is outside.  However, as I looked down at Giggles expectant grin I figured a few minutes of romping in the snow was exactly what she wanted.  So, I piled on the long underwear, gloves, sweatshirts, earmuffs, puffy coat, etc., and opened the back door.  She bolted outside and went flying around the yard at Mach 1 speed.  Watching her play and bounce from one snow clump to the next was pure enjoyment!

LUPUS NEWS & RESOURCES

When I'm choosing a topic for a blog post, I'm immediately overwhelmed with an endless number of ideas to write about.  Sometimes it's difficult to narrow it down or focus on just one. I want to share enough to connect with readers but not too much that I put you to sleep!  I try to focus on blogging about personal stories, experiences and adventures to communicate my message.  However, I will leave the medical terminology and research information to the professionals.  And so, frequently I'll provide a link to the websites with the experts or clinical trial/study information.

And sometimes, it's fun just to insert a cute picture of Giggles ..... I call it "stress relief"!  As my blog develops, I will include a section dedicated just for "Lupus News & Resources".  

Here are some of my favorite websites:

The Lupus Foundation of America (www.lupus.org) based in Washington, D.C., is the leading national charitable organization whose mission is providing programs for research, education, support and advocacy to all people affected by lupus.  You can find information on clinical trials, support groups, a physician referral list and current lupus events in your area.

Alliance for Lupus Research (www.lupusresearch.org), based in New York, provides medical information for resources on rheumatologists & mental health, prescription assistance programs, and other programs.

MedlinePlus (www.medlineplus.gov) is an online information service produced by the U.S. National Library of Medicine; medical encyclopedia.

National Institute of Arthritis and Musculoskeletal and Skin Diseases (niams.nih.gov) is part of the National Institutes of Health.

WebMD (WebMD.org)  online publisher of news and information pertaining to health, well-being and drugs.

American College of Rheumatology (rheumatology.org) is an organization of medical professionals dedicated to the study and advancement of rheumatology.


As I stated earlier, it's best to leave certain things to the professionals! 

I hope everyone is staying warm, if you're having a snow day, and my prayers are with those in California, surviving the wildfires.  Please stay safe!



    

Do You Know Where Your Medications Are?

Safeguard Your Medications

On Tuesday, while I was at my doctor's office for a routine visit, the topic of medication security came up.   If you're living with a chronic illness, or are a caregiver, you no doubt have or will develop a mini-pharmacy in your home over the course of your life.  Whether it's your current supply of daily medications, those used only during flares, drugs that caused an allergic reaction or just weren't effective; they all need to be properly stored and safeguarded.  

So, where do you keep your medications?  Right now, take a moment and look around your house or office, what do you see?  Are prescription bottles lining your counter tops or in plain sight for anyone to see who walks in the door?  Are they kept in your bathroom or medicine cabinet?  On the nightstand?  In your purse or pants pocket?  Or, stuck between two cushions on the couch?  Are they in your car?  If they're in your car I want you to stop reading my blog right now, get off the couch and go get them .... go ahead, I'll wait!

Now that you're back, and all kidding aside about the couch cushions (I hope), let's have a serious conversation about where to store your prescription medications and the proper disposal of your expired and unused supply.  Managing a long-term illness can be very expensive.  If you add up the cost of your medications (pills, patches, injections, topical ointments, analgesics, biologics, corticosteroids, NSAIDs, DMARDs, over the counter, etc.) for just the past few months, it can easily rival most mortgage payments.  Prescription medications are a big investment and they should be properly safeguarded.

Safeguarding your medications could prevent an accidental overdose of a young child or poisoning of your pets.  Establishing a ritual and properly storing your medications can reduce chances of you losing/misplacing them and even help avoid a potential theft.  The high cost of your drugs can be exacerbated if you have to replace them due to theft or loss.  In some cases involving pain meds (i.e., narcotics/opioids) you may be refused a replacement prescription without a police report documenting the theft.  So for many reasons, it's absolutely crucial to take this matter seriously.

My Top Ten List

Let's get back to the conversation with my doctor.  When I explained how I handled security of my medications, he just smiled and said "That's your FBI training!" and then we got sidetracked with self-defense training and dog stories! 

Here's my top ten list:

1. Don't leave medications and prescription bottles out on the counter; except for a daily/weekly pill case that can be easily disguised or strategically placed out of the way.  This is especially important when service technicians, contractors, cleaning services, etc., are in your home.  No one wants to assume the worst in a person; but, a casual comment about observing pill bottles on your counter can be shared with unknown parties, making your home a potential theft target.
2. Do use a P.O. Box for receiving medications from mail order pharmacies; especially, if no one is home during the day.  Don't want meds sitting on your doorstep.
3. Don't store medications in the bathroom (humidity can degrade the product).
4. Do lock in a safe (for unfilled prescription orders; not electronically filled).
5. Do consider adding a deadbolt lock to a bedroom closet (or other applicable room) where you can store medications in a portable drawer/shelving unit.  
6. Don't leave filled prescriptions in your shopping cart as you shop (i.e., Walmart).
7. Don't discuss your medications or therapies with people you don't know.  What you think is an innocent conversation could be an attempt by someone to solicit information from you.
8. Don't leave medications in your vehicle, even if it's parked in your driveway.  If you're out running errands, "Oh, I'll just be 5 minutes!"  Put the prescription in your purse or pocket and take it with you.  Thieves are opportunists looking for unlocked cars, items in plain site.  
9. Do keep medications out of reach from children, pets and visiting grand kids.  Now is a good time to consider adding a deadbolt to a bedroom/office closet or storage room.
10. Don't tell people where you keep your medications!  Do not advertise your security measures.

Generally speaking, it's a good idea to always be aware of your surroundings regardless of your health.  But even more so when living with a chronic disease such as lupus or fibromyalgia.  When you hurt all over, thinking about your third doctor appointment of the week, or trying to drum up the energy to buy groceries; you're not focusing on what's going on around you.  Adding to the mix, having mobility issues such as walking with a cane or a wheelchair, you could be putting yourself in a vulnerable position.  Be cautious of where you park.  Is there enough lighting and do you have a clear path to the front door of the business.  If you qualify for a handicap placard, it's a great tool to use.  

How To Properly Dispose of Your Unused Medicines

Finally, it's just as important to properly dispose of your unused medications.   Certain drugs can be thrown in the trash (when mixed with an unappealing substance like coffee grounds or kitty litter) or flushed down the toilet (only if specifically instructed to do so on labeling).  Please visit the DEA website to locate drug disposal sites and drug take back programs.  Some states have drop-off locations at your local police department or pharmacy. 

Also, you can visit the FDA website for information on "Where and How to Dispose of Unused Medicines".

Hope this was helpful and will encourage you to have a conversation with your doctor about the best way to safeguard your medications.  Thanks for tuning in!!!