Monthly Archives: January 2014

Would You Like Some WHINE with that Cheese?

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How do you perceive “whining”? Never in my life have I coveted pity from others. I can’t stand for people to feel sorry for me! It makes me cringe … literally. I have been a strong woman in my faith, values, morals and work ethic. I’m proud to be a strong woman, but even strong women have their breaking point and RA was mine.  In the past, you could present a problem to me and I was action oriented looking for a solution to get it fixed and out of the way so I could move on to the next task at hand. You can’t fix RA which lends to frustration. Frustration vented sounds like whining. That is when I realized that is how the chronically ill get labeled as whiners. Unfortunately that label can start right in your own home, the doctor’s office, in your church, or place of employment.

Why do people whine? Bottom line: because they are not being heard and/or their needs are not being met. Unfortunately, that combo is prevalent with those suffering from rheumatoid arthritis. Why?

  • Lack of general knowledge about the disease among the public, your first contact medical team, friends and family. Grass root efforts to promote a name change from rheumatoid arthritis (RA) to rheumatoid disease (RD) or rheumatoid autoimmune disease (RAD) have been slow in coming. By continuing to have the word, “arthritis” in the name of the disease folks don’t realize that arthritis is a symptom of a bigger disease and limit its effects on the body. In fact others tend to think of RA as a version of arthritis due to aging (osteoarthritis).
  • Inadequate management of the symptom most bothersome to the patient: pain. Pain is what drives the rheumatoid patient to the doctor, but it’s not the primary focus of the rheumatologist who has been taught that if you prescribe the correct drug cocktail to halt to progression of disease the patient’s pain will improve and the patient has a chance of remission. I’ve not once heard of a patient seeking a rheumatologist because her finger is growing crooked! No, it’s because it hurts like HELL! Until rheumatologists change their focus on first getting the pain controlled, then looking at these long term treatment plans which are a shot in the dark (I’m going on 5 years with unchecked disease) then the patient/physician relationship will be compromised and synergistic solutions will be lacking.
  • Presumptions of others: you don’t look sick therefore you must not be sick.
  • Financial burden. When a biological agent costs in the thousands of dollars per month this puts a hardship on socioeconomic status, a burden on the family, and a preconceived burden on the public as one falls into disability.

If you know someone who has RA or is chronically ill, please try to look beyond the ” whine factor”  if indeed someone is whining because underneath is a person who is hurting both physically and mentally, just wants to be heard and accepted not necessarily fixed, and who needs others to at least try to understand. A little compassion goes a long way. Consider how you’d feel if life as you know it was yanked away from you because you became sick and try to approach your chronically ill loved one with that type of empathy.

If you are the one doing the whining, then I say:

  • Try to pick one or two people in your life to truly confide in and with whom to share your struggles. Getting your need to be accepted and heard met is key to decreasing the whine factor.
  • Be open-minded. It’s easy to develop a callous toward solutions when you’ve been told that XYZ cream, diet, exercise program fixed so-in-so. As a nurse and a patient, I can’t turn off 16  years of nursing education and practice. I try to give my fellow RA’ers a hand up by sharing my medical training when asked or I hear a whine. A whine is a need. Not all respond favorably. If someone goes to the trouble to help you when you’ve presented a need, please don’t cut them off at the knees. Instead see it as a blessing that at least that person cares enough to try to help.
  • Communicate your needs to your medical team and take control of your medical care. You are paying them for a service and if your needs for this service are not being met, then consider hiring another team.
  • Don’t allow your emotions to control you. Refrain from punching someone in the face when they ask literally or figuratively, “would you like some whine with that cheese?” and instead use it as an opportunity to reach out to someone by expressing yourself: “I’m sorry you feel as though I was whining. I’m going through a rough time right now and I could use some help,” then don’t be afraid to name the type of help you need: a hug, prayer, time together, back rub, comfort, a ride to the doctor’s office, etc… People become deaf toward whining, but are quick to respond to meet a need if they know what that particular need is, especially if they care about us. We only have to ask.
  • Be wary of bitterness. Slight after slight from others begins to become a brick wall where you start to close yourself off and categorize everyone as the enemy.  There is a difference between what is perceived as whining and what is pure venom.
  • Smile more. Try to find some joy in the simplest things by counting what blessings you do have instead of focusing on your have nots. For a while I fell into a slump of counting have nots and it was harmful to my attitude and outlook on life. Feeling sorry for yourself just doesn’t help a thing. Each person can find at least one thing per day to be thankful for even if it’s as simple as the sunshine on your face.
  • Know that you are not alone. There are support groups for RA patients online and demographically.
  • Trust in God. Even if there isn’t a single soul in your life that cares, God cares. Pour your heart out to him. He is always with you and he always listens. I’ve prayed for a cure for 5 years, but I’m not discouraged because I know if I’m not cured in this life I will be in heaven. My faith gives me a peace and hope in my heart.

Note: If you are newly diagnosed it’s perfectly fine to whine and carry on, scream, cry, beat the pillows but after a while you need to begin to educate yourself, take charge of your medical treatment and be a participant in your care. Do not allow yourself to wallow in your emotions. Try not to strike out against those closest to you in anger. You might find a blog I wrote about the grief associated with RA last year a helpful start.

Would I like some whine with that cheese? Why, yes please! A little compassion for a start. 😛

Butrans Pain Management System for RA

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I wanted to write a specific post about the Butrans pain patch for control of chronic pain that is moderate to severe because it has changed my life, but I’ve found in talking to other RA patients and them in turn asking their physicians about it, that there is some confusion with this newer pain medication system and the pain patches used by cancer patients. Because of lack of knowledge about this patch, patients are having to educate their physicians. So, I wanted to give you the scoop because I find it senseless for RA patients to suffer the way we do day in and day out with pain eroding our hopes and dreams.

Butrans is a patch worn on the skin for 7 days at a time that contains buprenorphine, an opioid pain medication, which is a narcotic. The Butrans skin patch is used to treat moderate to severe chronic pain around the clock so it is not ordered for those with bursts of intermittent pain or for those needing pain control for a short time. It comes in several different strengths: 5mcg, 10mcg, 15mcg, and 20mcg. I am on the 10mcg patch. Because Butrans was made for the chronic pain sufferer, it makes it perfect for those of us with moderate to severe forms of autoimmune disease experiencing chronic pain. The patch is small, about 2 1/2″ wide and 2″ tall, and is flesh colored and easy to wear. It looks like a large band-aid. The material on the patch is breathable, but waterproof so you can shower with it on without fear of it coming off. You do have to be careful with the storage and disposal of this medication, especially if you have children who can get into your medications as the patch could be fatal to a child. As a nurse, I recommend any patient taking narcotics keep their medications in a lock box with a combination lock for the safety of others and for safe keeping.

Butrans has kept my pain levels controlled to “background noise” when my body is at rest.  Prior to Butrans I was on a low dose oral pain pill but it was not enough to adequately control my pain. In adding the Butrans pain patch to my regimen, my pain has been significantly better. Disclaimer: Butrans is not a cure all! I’ve had S-RA and other autoimmune disease for 5 years that has gone unchecked by biological agents so I have permanent damage and active disease. I still have pain every day, hour, and minute but the pain no longer makes me want to stop breathing to escape it. I continue to have flares because I have active disease, but the pain isn’t so severe I walk the floor crying or have to go to the ER to determine if I’m having a heart attack or just  a nasty round of costochondritis. When this happens now, I am able to take a low dose pain pill (the one I was on pre-patch) and a low dose muscle relaxer.  When the pain breaks through the control of the patch this is called breakthrough pain and it will require treatment plan because it is inevitable. This is why I warn that you can’t just get on this patch and expect to have no pain and it does not treat fatigue, inflammation, or other symptoms of RA. I want to be clear about that as not to mislead anyone.

For the last year I’ve heard many stories like mine from moderate to severe chronic pain sufferers, but few have known about Butrans. There was such a huge gap in adequate pain medication coverage when Darvocet was removed from the market. Many people, like me, are allergic to the first line choice of most doctors which is Lortab. Finding a oral pain medication that worked was difficult and I struggled through needless months and years of pain because there was nothing for me. I either took the lower dose medication that was inadequate or I was facing skipping over the level of coverage that Darvocet provided and going on up the narcotic ladder to morphine or stronger. I did not want to do that. I’m very cautious about taking pain medications. When I learned about Butrans through a brochure given to me by my doctor, it seemed like the answer that was appropriate for me.

What have found in trying to educate others about this new patch, is that a lot of doctors don’t know about it and when their patients ask for it, they make the wrong assumption that they are asking for the pain patch known as Duragesic (fentanyl in generic form) that is worn by cancer patients 3 days at a time, that comes in different mcg doses,and is clear in color. Docs are afraid to prescribe this very strong narcotic for fear of non-cancer patients dying in their sleep from the overdose! So, when the patient asks for a “pain patch” because they can’t remember the name “Butrans” the doctor either freaks thinking you are drug seeking for this stronger patch or they simply haven’t heard of the Butrans patch because it is a newer drug and assume you are talking about the stronger patches worn by cancer patients.

If you decide you would like to know more about the Butrans patch this link has the best comprehensive information in laymen’s terms that I’ve found: http://www.drugs.com/butrans.html. You may also wish to visit the drug website at  http://www.butrans.com to print prescribing information for your physician if you are interested in trying this form of pain management. I do strongly recommend that you print the information and take it to your primary care physician so they can learn about Butrans and together, you can see if it is right for you. Most likely your rheumatologist will not prescribe this medication for you as they rarely treat pain. I’m providing this information as another alternative to those who suffer with debilitating pain who have not responded well to low dose prescription pain medication.