The Burden of Chronic Pain

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Did you know that over 100 million Americans suffer from chronic pain daily? Did you know that $600 billion is spent on treatment and lost productivity per year because of chronic pain? That adds up to more than the cost of cancer, diabetes, and heart disease treatment combined!

The statistics mentioned are from http://www.painmatters.com, a website that is for patients with chronic pain and their healthcare providers and were cross-referenced online with webMD and time.com. At this website, you can view the Discovery Channel’s video: Pain Matters, which gives the testimonies of several chronic pain patients. Although this video was produced several years ago in an attempt to bring awareness to the subject of chronic pain, it is still relevant today.

The psychological fall out of experiencing chronic pain is a complex problem in that chronic pain sufferers are twice as likely to made plans for suicide as an attempt to regain “control” over their situations and are more likely to carry out their suicide plan vs. a non-chronic pain person. The downward spiral of chronic pain that leads to loss of profession which is tied to loss of identity magnifies the fact that chronic pain patients are three times more likely than a well person to experience deep depression.

Statistics also show that 4 out of 5 chronic patient patients turn to family members for help. 80% of these persons turning to others for help feel like a burden to their loved ones. Caregiver burnout is high among those caring for loved ones with chronic pain. Invisibleillnessweek.com reports a 75% increase in divorce rates when one partner has chronic illness.!

People with chronic pain need validation. Statistics show that the number one complaint among chronic pain patients was that they did not feel validated by their families, friends, and even their healthcare professionals. Why is it so hard for people to understand pain? Pain is subjective, meaning it can’t be measured so much by outward appearance. Healthcare professionals must listen to what the patient says about the pain which is why a pain scale from 0-10 is often used with 0 being no pain and 10 being the worse imaginal pain possible. However, the pain scale isn’t reliable because patients who feel that they are not validated will often understate their pain to hide it or overstate their pain rating to feel validated. This is why healthcare professionals often ask about sleep cycles, ability to perform certain activities of daily living, and coping methods to try to get a clearer picture of what the pain is like and if their treatment plan is working. Because of these types of communication barriers about pain, 4 in 10 chronic pain sufferers state that their doctors do not customize their pain regimen.

In addition, there is a bias toward women with chronic pain. Studies show that women are more likely to be undertreated for chronic pain than white males by their healthcare professionals. Many women are dismissed as being hormonal, which is quite insulting. A special non-profit organization for women with chronic pain was started by one of the women in the documentary: Pain Matters. This lady suffered with an undiagnosed condition for 14 years! You can learn more about her organization for women with chronic pain at: http://www.forgrace.org. There are many resources at her website, including an online petition asking for equality in pain management for women.

Another area that is a burden of chronic pain are the new laws that effect chronic pain patients in regard to opioid pain management. The Federal Drug Administration (FDA) estimates that 7 million Americans abuse prescription pain medications. Because of this drug abuse, the Drug Enforcement Administration (DEA) has made new rules that doctors must follow in order keep their license to prescribe drugs. As of August 2014, the crackdown on prescription narcotics included hydrocodone, listing it as a Schedule II narcotic. This is a frequently prescribed medication for chronic pain sufferers. This new regulation requires physicians to write prescriptions for these drugs for no more than 30 days at a time, the prescription must be written (no call in to pharmacy, faxed, or sent electronically), and the physician must evaluate the patient for ongoing treatment. The major drawback to these new regulations is that chronic pain sufferers are less likely to get the medication needed as fewer and fewer primary care physicians are wiling to prescribe narcotics and instead are referring their patients to pain management specialists.

Sharing the burden of chronic pain with other chronic pain sufferers is perhaps one of the more proactive things that the chronic pain patient can do. Not only does this provide validation from others in a similar circumstance it also allows the sufferer to be a support to others. This relationship helps lessen the burden on care-givers, lessens the incidence of aloneness that leads to deep depression and ideation of suicide, helps communication with healthcare providers, and can serve as a distraction from pain. Organizations like the American Chronic Pain Association can help with resources such as connecting you a local chronic pain group. You can sign up for their free newsletter and explore their many resources such as ways to communicate with your healthcare provider, learn more about your disease, how to track pain, and other educational materials at their website, http://www.americanchronicpainassociation.org. There are also many online groups in this age of social media, but be sure to check out these groups for a good fit, security, and well roundedness.

The greatest burden of chronic pain is on the chronic pain sufferer. If you suffer from chronic pain (pain lasting more than 3 months) then seek help from your primary care physician. Be ready to speak honestly about your pain and how it has had an impact on your life. Hoping it will go away, ignoring the pain, or being afraid to express how bad it really is only hurts the chronic pain patient more as they are socioeconomically impacted by unrelieved pain. If you know someone who has chronic pain, please reach out to them. Share the video: Pain Matters. Most of all, let them know you care.

Crisis: When You Don’t Know What to Say

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As a chronically ill person who looks normal on the outside, I find that people often don’t know what to say when I’m in a flare or I have to seek emergency medical treatment. I don’t understand how one day I can perfectly fine and the next confined to bed, so how do I expect outsiders looking in to get it? People don’t know what to say. They shuffle uncomfortably in front of you. They wring their hands. They offer to pray. They walk away. I know before my nursing education, I was guilty of some of the same behavior.

What do you say when someone is chronically ill and in pain? What do you do when someone you love is dying from cancer? What do you say when someone files for divorce? When someone dies? When someone lost their job? We humans just are not good at awkward moments. I’m certainly not good at it, but I’m willing to try to do better.

Recently my Sunday School class studied a book, “Fight Back With Joy” by Margaret Fineberg. Margaret is a Christian speaker who recently survived breast cancer. Her book is about her faith and battle with cancer. I felt the advice she gave applied to anyone going through a crisis.

If you have a loved one going through a crisis of some sort and don’t know what to say, these are great tips outlined by Margaret.

5 Things To Say When You Don’t Know What to Say

  1. “Know that you are loved and prayed for today.” This puts the focus on the person in crisis and lets them know you are concerned. The words let the person in crisis know they aren’t alone and that God is with them too.
  2. “My heart aches with you and for you today.” This lets the one in crisis know that you feel their grief but still centers on the person in crisis.
  3. “I have experienced loss, and I am so sorry for what you’re going through.” This opens up the possibility of comforting those in crisis with the comfort you received. Remember to keep the focus on the person in crisis and not your own story.
  4. “If you have a specific prayer request, I’d be honored to pray for you. But in the meantime, know that I’m praying for you and asking God how to pray for you best.” This breaks the silence and lets the person in crisis know that you are committed to pray. Often during a crisis the person doesn’t know ask you to pray about.
  5. “You are so loved! What specific thing can I do and/or provide that would help you right now? Let me know – and if you don’t have any ideas, I have suggestions.” Don’t assume you know what someone needs. This usually results in an abundance of one or two resources and a lack of other needs being met. “The refrigerator fills with casseroles that soon go bad; the closets overflow with blankets while medical bills go unpaid and the lawn isn’t mowed for months.” Offer practical ideas like mowing the lawn, watching the children, cleaning the house, doing a load of laundry but only if you are sincere in helping.

Source: “Fight Back With Joy” by Margaret Fineberg, pg179-182.

For more ways to serve those in crisis check out Margaret’s webpage: http://www.margaretfineberg.com/fightbackwithjoy.

Adhesive Capsulitis aka Frozen Shoulder

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On June 3, 2015 I had a outpatient procedure called “manipulation under anesthesia” (MUA) to the left shoulder for the diagnosis of adhesive capsulitis of the left shoulder. This condition is “frozen shoulder”. The orthopedic surgeon I consulted for this condition told me that this is a common ailment for patients with my disease process: secondary to RA or other inflammatory arthritis and/or diabetes. For the last two years I was unable to raise my left arm sufficiently to get through many of the activities of daily living. The MUA was followed by physical therapy that started the afternoon after the procedure.

I was put to sleep for the MUA because I was told the manipulation of a frozen shoulder is too painful to perform while awake. The orthopedic surgeon forces the arm through range of motion, hoping to break loose the adhesions that have caused it to freeze up. It is considered a minor “surgery” even though there was no cutting involved. I was sore after procedure, but there was no severe pain associated with the procedure.

Therapy started hours after the procedure. I had ten physical therapy treatments with some minor improvement to the mobility of the arm. The orthopedic surgeon was not pleased with my progress in therapy, stating that I’d lost mobility rather than gain due to inflammation. He recommended another procedure called a mini-arthrotomy of the left shoulder.

I had the mini-arthrotomy on June 17, 2015 during which, the surgeon made a small incision about 1/2 inch long to the front of the shoulder. He did not cut into the rotator cuff, but instead manually broke the adhesions away from the rotator cuff. I was sent home that afternoon with a device called a polar ice cube, which held ice water that circulated via an electric pump through a pad attached to my upper arm and shoulder by velcro straps. I had to keep this ice water circulating through the pad for the first 48 hours after surgery to keep inflammation at bay. My arm was also in a sling. I was instructed not to take the arm out of the sling at all for the first 48 hours then only to shower and perform what is called pendulum exercises.

Pendulum exercise is simply bending at the waist and letting the arm dangle downward. Using your feet you rock your body to let the arm swing like a clock pendulum with no forced movement at the shoulder. This exercise is also prescribed to help prevent frozen shoulder. The arm had to remain in the sling for two weeks. I was given Tylenol #3 for discomfort which I took minimally.

I returned to the orthopedic surgeon’s office on June 30, 2015 at which time two sutures were removed and steri-strips were applied to the site. It’s a small wound that had already closed. I was allowed to ditch the sling with instruction to wear it only if my arm was tired or if I felt I needed it in public to protect my arm from being bumped. Rather than return me to physical therapy, the surgeon gave me some simple home exercises to do to increase mobility. His goal has been to do the most minimally invasive treatment and to avoid inflammation.

I’m to return to see the orthopedic surgeon on August 25, 2015 for a re-evaluation. I can say that I have gained mobility in my arm, but I cannot raise it well. I cannot put it in the position that a grade-school kid would in order to get the teacher’s attention but I can style my hair with more ease, turn my palm over to accept change, close my car door, and many other activities of daily living I was unable to perform before. I do not think it has improved to the degree I feel the surgeon will be satisfied; however, I am satisfied.

I lived with this condition for two years where I could not even raise my arm above the level of my left ear because I was told that my shoulder would never be right and surgery would only worsen the condition. That has not been the case. No, my shoulder hasn’t been restored to 100% mobility, but I can use it again and that is worth a lot to me.

Can A Orthopedic Surgeon Help RA?

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My best friend has sero-negative RA which has been a blessing because we tend to push each other for the best quality of life. I prodded her into getting a good primary care physician to steer her medical care to take the stress off herself and she has encouraged and helped me along the way too. For years she has been telling me how her orthopedic surgeon and the orthopedic physician assistant she sees have been such a great help to her in her management of disease symptoms. I’ve always been skeptical. As a nurse, I know the reason surgeons go into surgery is to cut! They love it. They live for it! With this knowledge in mind, I’ve always put my friend off when she suggested I start seeing an orthopedic surgeon to assist in the management of my autoimmune diseases. Not that my friend has a bad ortho because she in fact has a great ortho who has never once not listened to her or insisted on carving her body up like a Thanksgiving turkey. It is just that I know these kinds of surgeons are rare, very rare. I dug my heels in and hedged every time she suggested an ortho for my frozen left shoulder issue.

Well, I couldn’t have been more wrong. Having lived with a frozen left shoulder for two years, crying, walking the floor in pain, or not being able to tolerate rolling over on that shoulder in my sleep without waking up in such pain as if I’d been stabbed by an unknown assailant …. I gave in. The last rheumatologist told me that RA couldn’t have possibly damaged my shoulder and insisted I had to have injured it somehow. There was no injury. He insisted that I’d have to get arthroscopic surgery done on my shoulder and have it biopsied to PROVE to him that RA caused the damage to my shoulder. What an idiot! His stance on this subject ultimately lead to me no longer seeing him.

My left shoulder pain started during my second year of diagnosis back in 2010, but it drastically worsened during 2012. I was assigned physical therapy for the shoulder stiffness, pain, and mobility. I only worsened which led to physical therapy being cancelled. In 2013 – 2014 the shoulder began to freeze up. I can’t raise my hand above my head or reach backward with my hand past my hip, nor can I turn my palm over far enough to accept change from a drive through window. These are just a few of the inconveniences I’ve learned to live with. The dull pain the shoulder is constant and radiates to the shoulder blade, down the arm, and into the collar bone region. For the last year, my primary care physician has had me doing exercises for a frozen shoulder that has keep the shoulder from getting any worse, but has not helped it improve the condition.

The last straw was a few weeks ago when I found myself crying in front of the bathroom mirror trying to raise my hand to my hair to part it off and style it. I just couldn’t do it. I made an appointment and got my chin length hair cut into a boyish pixie style and I also made a new patient appointment to see an orthopedic surgeon. The pain in the shoulder is constant. It wakes me up at night hurting. I just turned 48 years old earlier in the month and I knew I couldn’t endure another 2 years much less 20 more with this shoulder like this. I figured if the ortho didn’t have any other alternatives to offer besides cutting on my shoulder, then he wasn’t the one for me. Symptoms had finally pushed me to the point I was willing to take a risk on another specialist. I did my homework in picking out a orthopedic surgeon and ended up choosing one I had previously worked with as a nurse because he had the best patient reviews and was the chief surgeon of his orthopedic group.

I saw the ortho on Tuesday and without looking at my x-rays or the baseline labs and radiological reports I brought with me to build my case to “prove” I have RA, he looked at my hands and examined my shoulders and proclaimed, “This damage was caused by rheumatoid arthritis. How long have you had it?” I know my face must have registered a look of shock! What doctor have any of us ever seen that makes a proclamation like that? Not even rheumatolgists believe us until we spill blood, tears, and have a hissy fit, right??? He told me I have adhesive capsuilitis that is severe in the left shoulder, that in layman’s terms is a “frozen shoulder”. He told me my right shoulder has moderate adhesive capsulitis and if not corrected would end up like the left. I told him I didn’t have any injury to either shoulder and he kindly explained that the constant inflammation had left scar tissue/adhesions in the shoulders. In his best Texas drawl, he said, “Sweetie, why did you wait so long to come see me? You don’t have to live like this!” and I almost swooned at his feet! He shook his head, aghast that I had endured home exercise for a year, lived with the condition for so long, and told me flatly the rheumatologist was wrong. He said, “I can help you!” and I had to blink back tears because he was so firm in his conviction.

I now have some hope that I can regain use of my left arm fully. I will go in on June 3rd for sedated manipulation of the left shoulder. A anesthesiologist will put me under while the orthopedic surgeon manipulates the left arm to bust loose the adhesions that have formed around the rotator cuff due to chronic inflammation caused by rheumatoid arthritis. He explained that he cannot do this with a local injection to numb the shoulder because it is too painful and he needs the arm fully relaxed to manipulate it. He also said the loud popping sounds of the adhesions breaking is alarming. It will be an outpatient procedure followed with 10 business days of physical therapy. He will also administer a strong steroid injection along with a numbing injection to the left arm shoulder. While I am under anesthesia, he said he will also inject the right arm shoulder with steroids to help prevent it from freezing up.

If you think you might have a frozen shoulder or would like more information on “frozen shoulder” or adhesive capsulitis, please visit this link from the Mayo Clinic.http://www.mayoclinic.org/diseases-conditions/frozen-shoulder/basics/definition/con-20022510

You don’t have to live with this type of limited mobility. I will write a follow up blog to let you all know how I do with this procedure.

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!

Don’t Try To Fix It – Just Listen

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One of the most common statements among autoimmune disease sufferers is that those who haven’t experienced the disease themselves or seen a closed loved one suffer often do not believe the level of pain suffered is as severe as we say it is. Lay persons cannot comprehend in this age of medicine that someone would have to suffer as we do so they think that we are exaggerating our symptoms. It is easy to see how they would believe this when our pain and activity levels are so inconsistent. To the lay person it would seem we use our disease as a crutch. That judgement hurts. The lack of support among friends and family of autoimmune disease sufferers is high.

It would seem that loved ones want to fix us by offering remedies that worked for their grandma’s osteoarthritis, by recommending unconventional treatments that can do permanent damage to our corroded inflamed joints and tendons. They can’t comprehend how a joint disease can damage our internal organs, our eyes, our teeth. They recommend herbs and diets. The list goes on all in an attempt to fix us when what we really need is someone to listen, just to be there.

Having a person in your life that listens and understands without making judgements or recommendations to fix you is a key part of coping with autoimmune disease. My best friend is someone who also suffers from sero-negative rheumatoid arthritis. She and I met through an online support group for RA patients. We share our disease, our faith, and our lives. Knowing that she gets it without me having to launch into a explanation is beneficial for my mental health! We lift each other up. We pray for each other. We listen to one another. We don’t compete with each other as to who is sickest, we don’t launch into a full out whine-fest, we don’t belittle or back stab one another, and we don’t criticize each other. We have a very healthy friendship in which we are an encouragement to one another.It is my prayer that you have at least one person in your life like my best friend with whom you can share the darkness and light of living with autoimmune disease without judgement.

If you feel alone in this disease even among a household of people, would you reach out to God? Although I love my friend with all my heart, it is God who has made the difference in me. On my worse pain day, I have the inner peace that I’m not alone. I know that God understands my pain. Prayer and that connection with Him gives me hope that things won’t always be this way and that there is a purpose in my suffering. Pour your heart out to God. He is listening. Just start talking to Him as you would a person. You don’t have to say a flowery rehearsed prayer. Cry out to Him. In Him you will find more than a friend.

It is human for us to want to fix what is wrong in the lives of our loved ones, but we need to realize that we can’t change always change someone’s circumstances. If you are struggling with not being heard in your life, be open with your loved one that you just need a listening ear rather than a fix. If the person really cares about  you and your health they should be receptive to helping you by listening.

The following suggestions will help you communicate what you need from your close family and friends. In turn, keep these tips in mind when dealing with your family and friends because they need to be heard as well. We can’t fix our autoimmune disease, but we can change the way we cope with it and how we communicate. Consider the following list in helping you be there for someone in need and communicate what you need from others:

  • The best support you can offer is the power of your presence.
  • Listen with an open heart. Don’t try to talk out the problem.
  • Offer tangible help for physical needs without being pushy.
  • If they are crying, share their tears. If they are silent, share their silence.
  • Let them know you are available, ready to help – you will always have time for them.
  • Remind them that human beings can only do so much, but God can do the impossible.
  • Pray for them – and if they will allow you to do so, pray with them.
  • Let God carry the burden rather than taking it on your own shoulders. *

 

*God’s Devotion Book, 2005, pg295

 

 

A New Year with RA – Resolutions?

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Do you make New Year Resolutions or are you like me resolving not to make resolutions? LOL!  Even though I’m not one to make resolutions in January that are forgotten by February I do try to set a goal I want to work toward during the year. In 2013 I worked on praying for people when I said I would rather than it being lip-speak. Being chronic sufferers of pain, we know all too well how catch phrases like, “I’ll pray for you” can be words quickly spoken to end a conversation about our ailments. Because I’ve been left dangling at the end of, “I’ll pray for you,” I wanted to make sure that when moved by compassion to say those words to someone, I wanted to follow through. Prayer is so important in my life and has really got me through some rough spots when my health has failed. It took a little practice to get use to praying right then and there vs. waiting until some later time and forgetting about it (which is what happens to most of the well meaning people in my social circles and probably yours). I find I listen fully with compassion before offering prayer and then I ask permission to pray with them in the moment if they are receptive to it. If not, I pray for them silently immediately after the encounter. Having been on the receiving end of such compassion and heart felt prayer I know what a blessing it can be and the healing peace it can bring to chaos. In turn I’ve been equally blessed by offering the same to others. If you are a praying person, I’d challenge you to try praying for others immediately vs. putting it off to a prayer time or using it as a catch phrase. You’ll be amazed at the peace it can bring to the life of the one you are praying for and for yourself.

In 2014, I wanted to work on loving people. I found that the daily grind of disease and the lack of understanding among laypersons had left me feeling judgmental and bitter towards others. I closed myself off from new people because I was anticipating rejection when people found out about my illnesses. It’s hard to plan social activities on a calender when you have unpredictable flares. In the past people have stopped asking me to engage in social activities after I’ve had to decline and that rejection hurts. I got where I just didn’t talk about my health outside the circle of people who already knew about my illnesses. In fact, I just didn’t let new people in and ended up being more isolated than ever. I pre-judged new people and rejected them before they rejected me. I had to ask God to change my thinking. I made a new friend last year and I do firmly believe God placed her in my life because four months into our friendship, she ended up being diagnosed with an autoimmune disorder. In fact, during the last year, FIVE of my acquaintances have been diagnosed with some form of autoimmune disease. I don’t think it was by chance that they came into my life.

In 2015 I’m going to work on reclaiming my joy. I’ve found that being chronically ill has stolen my joy. My mother told me I was born with a joyful spirit. Over the last six years I’ve allowed disease to crush my joy making me a grumbling curmudgeon. My Sunday School class just started a new study on joy which has inspired me to work in this area. Rather than focus on all the things that illness has taken away from me I am going to try to focus on the positive. Instead of worrying constantly about finances I’m going to focus on what treasures I do have that are not linked to monetary terms. I think that by choosing joy, I can continue to work on praying for others and loving others more effectively.  Nehemiah 8:10 – The joy of the Lord is my strength.

Actemra Use Under Medicare

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It has been a few months since I wrote a blog. During this time, my rheumatologist has added Actemra injections every other week to go with my weekly methotrexate injections. I’ve had some success with this dosing but the doctor has had to adjust, hold, then resume methotrexate because of liver enzyme lab values rising which happens as we all know. The Actemra injections caused my triglyceride readings to soar to 503 which is pretty bad for someone who is nine month post cardiac stent placement. Because of the high triglycerides I’ve had to go on a medication called Trilipix to lower them and am currently awaiting repeat lab tests to see if it is working. If not, the Actemera may have to be discontinued. It does seem that for steps forward I’ve had a few steps backwards too.

I am having more involvement with my larger joints. My left shoulder is is partially frozen. I can’t raise my hand to the top of my head to work with my hair. With some home exercises, I am able to move my arm behind my back which I was previously unable to do. Just this last month, my left hip has decided to act up as well. On physical exam, the rheumatologist said I was going to have to do some physical therapy or I would be facing crippling in this joint as well. Xrays were taken to see what kind of damage may be in my lower back and/or left hip. Results are pending.

Medicare doesn’t cover the full costs of Actemra which is very expensive. As we move forward, into the new year I’m not sure that I’ll be able to move forward with Actemra injections because my copay will be much higher in January as new deductibles must be met and the copay tier resets. In fact, my Rheumatologist says that most of his Medicare patients can not afford these newer injectable drugs due to the cost of the copay. Currently, I am not able to afford a supplement insurance for Medicare Part A or B because I’m not retirement age so changing the injection to an infusion would not be covered by going to inpatient or outpatient infusions.

The drug company that makes Actemra does have a payment assistance program that only costs a commercial insurance patients $5-$30 per refill but the program like many others of its type exclude Medicare patients, which I don’t understand. I pay premiums and copays just like the commercially insured but I’m not eligible for the savings programs because I’m on Medicare. Why are Medicare patients excluded? Often our need is greater and our incomes are fixed.

Medicare has had a rather negative impact on the quality of my healthcare. The most staggering blow was the loss of my insulin pump after using it for 5 years. I simply am not adjusting to multiple injections daily. Now it looks like Medicare may take my option for cutting edge injectables for the treatment for RA off the table. I did better carrying my own commercial insurance policy.