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!!!