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!!!

TAKE THE PLUNGE!!!

Learning to Love The Pool Again 

Over the past several years, as I've contemplated starting a lupus blog, I collected ideas in a journal.  I was enthusiastic about this adventure and eager to write about a subject I'm so passionate about.  That journal is now spilling over with little scraps of paper, mangled post-it notes and articles I thought were insightful.  As I sort through it, one topic keeps jumping out at me .... aquatic therapy!

Growing up, I looked forward to the swimming pool in the summer or a family vacation at the beach.  I enjoyed splashing around with friends or a game of Marco Polo.  As a teenager and adulthood, my athletic interests veered towards land-based sports: soccer, tennis, softball, hiking, etc.  Aside from the water survival training I received in the FBI, I didn't consider myself a swimmer in the traditional sense.  But, when lupus entered my life and caused severe photosensitivity I was pretty devastated and couldn't imagine a life without sports and sunshine. 

Lupus photosensitivity affects many lupus patients and is exacerbated by the sun, fluorescent lighting and even computer screens.  Often causing a skin rash to develop or worsen with exposure and even fevers over 100 degrees.  Avoiding the sun during the heat of the day (10 am - 4 pm) for prolonged periods and wearing sunscreen (30+ SPF), hats and sun protective clothing, are a must if you do venture outside.  Photosensitivity can vary depending on what climate you live in and your  particular disease activity.

Aquatic Therapy

In 2005, when my rheumatologist first recommended aquatic therapy, I thought he was crazy.  An outdoor swimming pool was the last place I could go.  So, he explained it's physical therapy done in an indoor pool.  Of course living in San Diego you don't find too many indoor pools, so he wrote a prescription for physical therapy.  There was a medical center with a pool less than 10 minutes from my house.  This was a particularly rough time for me.  My disease activity was at its highest; walking to the mailbox had become as a chore, driving a car was excruciating (especially a manual transmission) and lifting anything heavier than a tea mug was out of the question.  I'd just been medically retired from the FBI and was feeling pretty low about life in general.  But, once I started the warm water exercising my joints started to respond; it was so soothing physically and mentally.

Since then, aside from a few setbacks due to lupus flares, I've been able to continue with aquatic therapy on my own and thoroughly love it!  I'd start in the shallow end of the pool and walk for 5 - 10 minutes then move into the deep end using a buoyancy belt.  The buoyancy belt, or flotation belt, suspends the body vertically in the water at shoulder level for a low-impact workout.  More importantly, your hair stays dry!

AquaJogger

A physical therapist introduced me to AquaJogger, a flotation belt for water jogging.  Some pools will have flotation belts on hand to borrow or you can buy them on-line at AquaJogger.  There are different types of flotation belts depending on your body type and activity level.  Most of them come with a water workout guide and DVD.  

Water walking, or water jogging, has become very popular over the past 10 years.  It's especially beneficial for anyone with joint & muscle pain or mobility issues, and beneficial for injury prevention and rehabilitative exercise.  And, you don't have to be a champion swimmer to get a water workout or have to pay for expensive gym membership dues.  I recommend seeking out your local city or county recreation facilities, such as a YMCA type organization, for indoor pools.  Depending on what part of the country you live in, maybe even your local high school pool will offer access or even select hotels.

I now live in Atlanta, Georgia, and go to a county recreational facility that has 2 indoor pools (lap pool & leisure pool for kids).  The rates are discounted for county residents and seniors (50+ years old) can purchase a seasonal pass for under $60 with unlimited use Monday - Friday.

Just getting in the pool even once or twice a week, can provide enormous relief.  Moving in the water, as opposed to on land, relieves some of the pressure.  Water walking has enabled me to stay active in light of the spinal issues I live with; including spondylitis and degenerative disk disease. It's an excellent option for any pain management plan.

Another added bonus, after water exercise my spirits are lifted, I feel a sense of calm and have a really good nights sleep!

Even Giggles enjoys the pool!

Please remember to check with your doctor before starting an exercise program you aren't familiar with and/or need assistance!







 

Happy Turkey Day!

Managing Turkey Day With Lupus

We all know having a chronic illness like lupus is a daily struggle, but when you add in the holiday season it can be overwhelming!

Taking a few moments for yourself to collect your thoughts and prepare a list of what you "need" to do and what you "want" to do can make your day a little less stressful.  It sounds simple, but I ask myself.  Does this chore have to be accomplished today? Or could the chore be completed on another day when I have more energy?  Everyday I start with the things I want to accomplish and then I prioritize (rank) them according to importance.  For instance, any medical appointments, groceries, walking the dog are priorities.  Of course, walking the dog serves two purposes as I get daily exercise along with my dog, Giggles!  And she always makes me smile!

Please pace yourself during this time of year and don't forget to schedule in a nap or just some quiet time to do a few gentle yoga stretches!

If you're the one preparing the feast today please remember to ask for help from friends and family.  If you're fortunate to have family nearby who will be preparing the meal (like me) you can be forever grateful, enjoy it and send a really nice thank you note!

I wish everyone a happy and safe Thanksgiving Day!

Lisa & Giggles

Happy Thanksgiving!

Lupus and Giggles!

Life Before Lupus

It was 1999, and once again I found myself draped in a white paper gown sitting on an exam table waiting for the doctor.  I was a young single woman in her mid 30's, living in San Diego, and in excellent health (up to this point, anyway).  Lately, I'd been experiencing a series of bizarre symptoms; unexplained face rash, sleep disturbances, severe joint pain, chronic sinus & respiratory infections, fevers, migraines and debilitating lower back pain. 

I didn't have time for this. After all, I lived in paradise (a.k.a., San Diego), had an amazing career as a Special Agent with the FBI, worked out 7 days a week, enjoyed hiking, boxing aerobics and competed regularly in tennis tournaments.  So, when my doctor uttered the word "lupus" I had a million questions.  What is that and how do you spell it?  How did I get it?  How is it treated?  How will this affect my livelihood?  This did not fit into my life plan.

As a newly diagnosed lupus patient, there's a lot of uncertainty, anxiety and fear.  In 1999-2000, there weren't a lot of websites about lupus; except the basic clinical definitions and how the average patients' life expectancy dwindled 5 years after diagnosis.  Oh, great!  That's what I needed to hear!  There were no bloggers or local lupus chapters for guidance and trying to find a support group was a serious challenge.  Fast forward to 2017, I've now been living with lupus for 17+ years and hope my blog will provide insight, support and understanding, or just some comic relief ... a place to go that I wish had existed when I was diagnosed.

For more information, please visit The Lupus Foundation of America.  

Blogs and Bank Robbers

"Arresting Lupus" is a blog about my journey with lupus; understanding how to live with, manage and even thrive.  As an FBI Agent, assigned to a bank robbery squad, the goal of an investigation was to identify the subject and ultimately arrest him/her.  If lupus was a bank robber, I'd hunt it down, slap on the cuffs and send it to federal prison for life (without the possibility of parole).  However, it's never that simple.  All investigations have twists/turns, unexpected outcomes and can take on a life of their own; much like lupus.  The key is to manage the expectations with the outcome. It's a life long learning process.

You won't see me making any medical recommendations on this blog, as I'm not a doctor.  However, I will say the best therapy I ever paid for was when I adopted my dog, Giggles!  She provides never ending amounts of love, companionship and comic relief .... laughter truly is the best medicine.  

Giggles