Monthly Archives: March 2015

What Does Your Bedside Table Reveal About You?

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What do the items on your bedside table reveal about you? Mine clearly says that an arthritic lives here. I’ve learned that preparedness is a must when sick and there isn’t anyone readily available to help. Other than a lamp and alarm clock, my bedside table is littered with the following:

  • A phone – I spend a lot of time alone and sometimes I can’t get up from bed. Literally. There have been times I’ve had to call a family member to come and stay with me or take me to the Emergency Room. If I didn’t have a phone at bedside I wouldn’t be able to call for help. Calling a friend is sometimes a welcome distraction from what is going on physically.
  • Prescription Medications – I keep extra pain medication and muscle relaxers at bedside. There are no children in my home so I am able to do that. If you live with others, you can keep a small locked box at your bedside to store a few extra doses of medication for those times you can’t get up or getting up would mean increased pain.
  • Water – Every night before I go to bed I put a glass of water on my night stand or I open a bottle of water to break the seal then lightly put the cap back on and put by my bedside. It is important that I remember to open the bottle because I may not have the ability to open it when I need it during the night or the next morning due to stiff, painful joints in my hands/fingers.
  • Topical Medications – I have a prescription liquid topical that I can put on my tendons and joints that helps temporarily dull the pain. I also have a slew of non-prescription topicals that help to some degree. The ones that work best are within reach.
  • TV/DVD remote control – Sometimes watching mindless TV shows is a welcome distraction or the background noise of listening to the nightly news reel lulls me to sleep.
  • Kindle – I have difficulty holding thick books now so I love my Kindle. I can read while in bed which is another great distraction when I’m not feeling well.
  • Bible – Sometimes seeking out the Lord is the only thing that works for me to help me feel less alone when I feel rotten. I should try that first more often!
  • Snack – Crackers, an apple, or a protien bar – Sometimes the medicine we take can cause a queasy stomach. If I can’t get up and walk to the kitchen, having something like this at bedside is smart.
  • Dog Treats – my faithful companion, Gracie, lies in bed with me when I feel awful and such devotion deserves unlimited treats!

So, what does your bedside table say about you? Maybe there are a few things I’ve listed that will help you get through your bad days when you are confined to bed or spark some forethought of your own. I hope that some of the things I keep at bedside caused you to smile. Chronic illness can isolate even those of us who live in a household of people. Having what you need at bedside can help you feel like you are maintaining some degree of independence too!

In addition to having a prepared bedside table I also have the following in the bedroom:

  • Electric blanket on the bed – I prefer to keep an electric blanket on the bed most of the year vs a heating pad. I’ve seen burns on patients who fell asleep lying on a heating pad (even those with an auto-shut off). I only use a heating pad when I am sitting up, alert. Most of us take drugs that suppress our immune system. Because of the suppressed immune response infection is likely and the failure of skin grafts adhering is high.
  • Cane – I have a off-set cane near the bed so when I’m stiff and can’t trust my knees I can get to the restroom more steadily. I try to keep a clear path to the bathroom. Throw rugs are secured with a non-skid backing to prevent falls.

Being confined to bed for even a short time is no fun at all, but it is sometimes necessary when disease flares attack your mobility. Think about what you need during a flare that confines you to bed and put those items within your reach to prepare yourself for a flare situation.

What is a Flare?

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Just what is a “flare”? Medically speaking the term is not recognized as a medical condition because a set of guaranteed symptoms cannot be assigned to the term.  “Flare” is the name that patients refer to as an exacerbation of symptoms that one normally may experience from time to time as a set of symptoms associated with illness, but magnified. To put it simply, flare means to break out or intensify rapidly per the Merriam Webster Dictionary. Because autoimmune disease patients have adopted this terminology many medical doctors recognize the term, “flare” as being a rapid intensifying of symptoms associated with a chronic disease.

There is much debate among patients with autoimmune disease as to what constitutes a “flare” which is why I would encourage you when communicating with your doctor to explain your symptoms during a flare vs. saying, “I am in a flare”. Using myself as an example, I have several autoimmune diseases and they don’t all flare the same. Flares vary in duration. The symptoms experienced during a flare of one disease may be different from another and if more than one disease is flaring at a time well then that gets down right confusing to me much less the physician! I have also noticed when comparing my flare symptoms to other patients with the same disorder there are some similarities but there are also significant differences too.

Remember, when communicating with your doctor about a flare:

  • Be specific about symptoms
  • Describe how you are feeling
  • Tell the doctor when the flare started and how long it lasted
  • Be sure to relay what interventions you tried that failed or helped

Most of the time, a seasoned Rheumatologist will ask you specific questions to collect the information needed about your flare. Please know that the doctor isn’t doing this to be difficult. Even with my nursing background, I remember seeing my Rheumatologist on a flare day and I rolled my eyes with an exasperated sigh of frustration when he asked, “What do you mean you are in a flare?” In my head, as a patient I was thinking, What? You’re the doctor and you don’t know what a flare is? Well of course the doctor knows what a flare is, but he didn’t know what a flare was to me vs the five patients he saw before me! 🙂

What causes flares? There is a lot of speculation about that too. Patients have identified changes in the weather, other illness, hormone shifts, stress, diet, activity level, and sometimes plain old bad luck.  Since researchers have yet to identify the actual cause of many of the autoimmune diseases out there it is no wonder physiciansknow little about what can precipitate a flare other than what patients have told them. Your own body is the best predictor of what may trigger your flare. You might consider keeping a flare journal to share with your doctor and see if a pattern emerges by documenting:

  • Date of onset
  • Does the date of onset correspond with cyclical events (menstrual or ovulation cycles, recurring deadlines, stressors)
  • Activity a few days prior to flare – Active? Inactive?
  • Weather before/during/end of flare
  • Deviation from your normal diet – A friend of mine has IC (interstitial cystitis) which affects the bladder and she can usually trace a flare back to something she ingested out of her norm like something she ate at a gathering that she didn’t prepare, etc.
  • Symptoms – how did they start, what was happening at the worse part of the flare, how did it abate?
  • Duration of the flare
  • Date it ended
  • Interventions that failed
  • Interventions that worked
  • Observations made

In searching for patterns to my flares, it has been my observation as my disease has progressed that I cannot have several days of outings in a row anymore. I’m just coming out of a bad flare that involved three of my autoimmune diseases that lasted 10 days. The flare was precipitated by scheduling back to back trips out of town to see doctors in an attempt to get the visits done. The flare was sealed by two snow/ice events a matter of days apart. I suspected in the past that busts of activity prior to a flare might be one of my culprits, but now I’m certain. Armed with this knowledge, I can make sure that I incorporate a 24 hour rest period between outings. Yes it is inconvenient and people don’t get it, but it is what it is. I won’t go through ten days of hell again if I can prevent it!

My prayer would be that cures could be developed  for autoimmune disease so that no one would ever have to endure the insidious, life-stealing pain of a flare again. This is meant to be a practical advisory for speaking to your doctor about flares and about helping you to identify patterns to your flares. With that said, know that sometimes there just is no rhyme or reason to flares and sometimes our healthcare providers fail to listen to us because they become desensitized after hearing about it over and over again. Sadly no one but the sufferer of a flare really knows what it feels like. I would encourage you not to give up, seek a healthcare provider who will listen, and never self blame.

If you’d like specific information about how to endure a flare, the Arthritis Foundation has an excellent short article with practical advice at this link http://www.arthritistoday.org/about-arthritis/types-of-arthritis/rheumatoid-arthritis/what-to-expect/flares/rheumatoid-arthritis-flare.php.

 

 

Let It Snow? Impact of Cold Weather on Autoimmune Disease

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I live in Southeastern Oklahoma where we traditionally have mild winters; however, February went out with a bang dropping four inches of sleet/snow last week and another inch this week which has tripped off my Autoimmune Disease family: Fibromyalgia, Seronegative Rheumatoid Arthritis, Undifferentiated Lumbar Spondylarthropathy, and Sjogren’s Syndrome. Bleh! I can usually handle one flare up of one of these nasty disease sisters with some grace but when multiples flare it leaves me limping along realizing just how I am at the mercy of Mother Nature.

I know some of you may be reading this with little sympathy, especially if you live in regions where the snow is deeper than the front door to your house. My apologies. I simply could not survive that climate with this disease pattern. 🙂 In fact, I’ve had a running inside joke with my autoimmune disease friends that the USA needs to make one of the islands of Hawaii a colony for AI patients. Wouldn’t that be great? A constant 70-80 degree temperature range? Ahhh, my bones would love it!

I’m not use to the impact of cold weather. I usually suffer the most in our 100 degree humid summers, but these late winter storms have caused me to have a lot of break through pain that I’m having to treat with extra medications. I’m sure I’m not the only one. Fellow suffers have known for a long time that shifting weather fronts and abrupt temperature fluctuations can bring on disease flares. So, short of moving to Hawaii, how can we tolerate snow days?

  • Limit Exposure specifically for Fibromyalgia patients, being out in snow or sleet irritates the nerves in the surface layers of exposed skin in your hands and face which will set off a flare. It’s really important if you have to be out in these weather conditions wear layers and to cover as much skin as possible and limit your exposure. Exposure to the cold sets off the deep joint pain associated with rheumatoid arthritis and spondylarthropathy.
  • Use Eye Wear – Sjogren’s Syndrome patients need to have good eye protection because the cold wind will further dry out the eyes and the glare from snow or ice on the ground can cause damage to already sensitive eyes.
  • Don’t Rely on Your Body  – Science has proven with those who suffer from autoimmune disorders of these types can’t just simply “warm up” relying on their own body mechanisms. These diseases are caused by a haywire autoimmune system which in turn affects the ability of the autonomic nervous system to regulate body temperature effectively. You are not likely to “warm up” on your own. It’s quite common to feel like you are freezing even when indoors.
    • Dress in extra layers even when indoors
    • Use heating pads/electric blankets, hot water bottles
    • Eat or drink something hot to warm yourself from the inside out
    • Take a warm bath/shower to aid warming up your core body temperature

Although I love watching snow fall and I think the trees are beautiful decked in white, I no longer have the tolerance for extreme winter weather as I once did. The days of making snow men, collecting a bowl of fresh fallen snow for snow ice cream, or walking to the mailbox on blustery days are over unless I want to pay for shaking hands with Mother Nature in the form of pain, profound fatigue, bed rest, and extra medications. I’ll be content in watching from my window with a steaming cup of hot cocoa in hand!