Rheumatoid Disease Awareness Day

February 2nd is Rheumatoid Disease Awareness Day. The RPF: Rheumatoid Patient Foundation, supports this day of awareness for patients, the public, and healthcare providers. This organization was founded by patients for patients.

You can read about the foundation at this link: http://rheum4us.org/about/ and also check out their educational materials. This site provides a lot of good, sound information for the newly diagnosed and shares progress being made in treatment for those who have been living with the disease for a while. You may choose to join the Foundation, but it is not necessary to access their educational materials. I would encourage you to bookmark their internet page for your own reference.

How do you feel about bringing awareness to Rheumatoid Arthritis? I will confess over time, my thoughts have changed about the matter. I went through my stage of research: having to read everything about the disease to educate myself. Then I went through the woe is me stage as I struggled to cope. I became angry because no one knew what the disease was about and did not believe my level of suffering. The public compared my hellish suffering to osteoarthritis. I thought if one more person compares a disease that has leveled my life to rubble to their pinky “killing” them I might just be fitted for a orange jumpsuit with a life sentence. Funny though, living with rheumatoid disease is a life sentence in it’s own right minus the orange jumpsuit. One is imprisoned by their own body. The jailer is the immune system gone haywire. The disease took me down kicking and screaming. One day … over time … and with God’s help I realized I had to let it go. I felt like I was at the end of my coping. I was growing bitter. It wasn’t serving any purpose to focus on the injustice of it all except to keep me ripe for a flare.

Today I can look at awareness for rheumatoid arthritis as just that: awareness. You may in the lifetime you have this disease bring some people to a level of awareness but no one will ever fully get what your situation is like except for another patient with the same disorder. Even then, you may share the same disease, but your symptomology won’t be exactly the same. You will have a shared understanding of what it means to suffer… as they say “misery loves company”.  Still no one knows what it is like for you except for you and your maker.  Finally I realized there are two groups of rheumatoid disease patients: those surviving it with hope or those surviving it with despair. I made the choice to survive in hope.

The awareness I would like to leave with you as this day of rheumatoid disease awareness approaches is that you never have to be alone in despair with this disease again. When no one else understands, Christ does. When your doctor can’t help you, Christ can. When you don’t think you can take another step forward, Christ will carry you. He is there waiting for you to accept Him. No medication, physician, spouse, family can ever provide what He gives freely: salvation.  It is only through my personal relationship with Christ that I am surviving chronic pain and illness with hope. I know this world is not my home. I have hope for an eternal future in heaven with Christ where there will be no more tears, no more pain, no more suffering. I refuse to live my life defeated. Instead I am victorious in Christ because this disease won’t hold me in a grave.  If you don’t know Christ  then I ask you to reach out to Him. My healing may not happen in this world, but it will happen in Heaven and that is my awareness as I enter my 7th year of enlightenment. John 3:16.

Faith During Illness

My faith in God sustains me through many trials including living with incurable illness and pain. I don’t know how I would have made it through some of the darkest days of my life without God. Having faith in God gives me the hope I needed to push through the pain, disability, and socioeconomic aspects of being sick.

My best friend and I shared Romans 8:18 on t-shirts we had made for each other to bring awareness to Rheumatoid Arthritis, which says Yet what we suffer now is nothing compared to the glory He will reveal to us later. (NLT) The hope I cling to in this verse is that one day I will have freedom from this disease, if not in this life, then eternity. I didn’t always understand this. When I was first diagnosed with autoimmune diseases I was angry with God, but you know what? He can handle our anger. I cried out to Him for understanding, healing, and I had to ask Him to forgive me for being bitter about my plight. I had to hold on to my faith and hope that things would be better.

There were days when I felt my faith was tested. I felt that disease was trying to rip me away from God because I felt I had lost so much but it was then that He revealed to me these words from the Apostle, Paul: And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow – not even the powers of hell can separate us from God’s love. No power in the sky above or in the earth below – indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord. (Romans 8:38-39 NTL).

Do you have that same hope? When I have walked the floor crying, lain in bed groaning and begging for God to let me die in my sleep so I don’t hurt anymore, or faced yet another daunting diagnosis I know I do not have to despair because my faith tells me this is not permanent. One day, He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. (Rev 21:4 NLT).

I see others who share my illnesses wail and live their lives as if there is no hope through their postings in support rooms on FaceBook and it breaks my heart. There is HOPE! When family, friends, and people in general let you down because they don’t understand …. Jesus understands. He is ever present and He loves us beyond our comprehension. For God loved the world so much that he gave is one and only Son, so that everyone who believes in him with not perish but have eternal life. (John 3:16 NLT)

A lot of people ask, “how can a compassionate God allow so much pain and suffering especially in those who love Him?” and the answer is not easy.  God didn’t create man to be robots. He created us with our own feelings and a will. He wants us to choose to love and follow him not to be made to do so. Because of sin in the world bad things happen, but God always works it to good. And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them. (Romans 8:28 NLT)  It took me a long time to realize this. I was even mad at God for a while, but that is okay because he still loved me and helped me work through it. How has God worked my pain and suffering to good? The pain and suffering slowed me down, grabbed my attention, and made me see how much I needed God. My grace is sufficient for your for my strength is made perfect in weakness.” (2 Corinthians 12:8b NLT) God  uses my illness to work in the lives of others. I am growing in his love.

I am reminded of Christian author, Janet Oke, who penned an analogy about one of her characters growing petunias in her yard. She explained that putting a box around the flowers to shield them from the wind, bugs, and anything that may harm them would keep them from growing and blooming. In the same way, God does not shield us from certain things in life so that we can grow. I believe that my illness is a way for me to grow and bloom into the person he intended.

My prayer for you is that if you don’t know about faith and the hope that I’m writing about that you will reach out by picking up a Bible and start reading. No doctor, medication, friend, or family member has helped me more than God in getting through the rigors of daily living with chronic illness and pain. I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit. (Romans 15:13 NLT)

NLT: New Living Translation of the Holy Bible

The Burden of Chronic Pain

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.

Butrans Pain Management System for RA

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.

Can there beThanksgiving in Illness?

There was a time during the first few years I learned I had S-RA that I couldn’t see the thanksgiving in having chronic illness. I was on a poor-pitiful-me spiral into depression because I couldn’t escape the physical pain of this disease, I was angry over the loss of my career, and I was scared because medical issues had caused financial ruin. I know some of you have been there. For any of you who may be reading this blog and have days that are colored by the lens of pain to the degree you don’t care if you live or die, I want to shout loudly and clearly, “Don’t give up! There is hope!”

1. Turn it over to God. I felt so alone sometimes. In my grief I’d cry over all my losses. I became resentful of others who seemed to have all I wanted yet took it for granted. My joyful spirit was crushed. Many people don’t understand this disease, but don’t let that stop you from crying out to God. He will put people in your life to help you. He sent a Christian lady to minister to me who also had RA that has become my best friend. One of the biggest complaints I hear from chronic pain patients is the lack of understanding by loved ones and subsequent loneliness and isolation. Even at my lowest point and I felt that no one cared, I knew God did. God did not pluck me out of the hell of this illness, but instead He took my hand and has walked through it with me. He will do the same for you, if you only ask.
2. Get your pain under control. It is my firm belief that until you have a trusted physician treat your pain, that you will never be able to know if a disease modifying drug is helpful to you or not. At some point Rheumatologists are going to have to recognize that the pain component has to be addressed first and then when pain is not blaring in the foreground of every thought, you might be more agreeable to trying these treatments for RA that require months of waiting before any results are seen. Most Rheumatologists won’t prescribe or manage pain prescriptions. Seek out a very good general practitioner, preferably a MD with a Internal Medicine specialty. We are complicated patients and docs use to just treating runny noses (acute illness) sometimes are not our best choice. Having a PCP (primary care physician) who listens to you, is trained well to treat chronic illness, and will help you manage your pain is essential to fight this disease.
3. Be kind to yourself and give yourself time to adjust. Rather than lamenting over all the negatives, try each day to be thankful for something you have in your life. It’s contagious. Once you make a concentrated effort to see beyond the negatives you will begin to see more and more positives. That advice isn’t something I just thew on the page. You choose your behavior. Your emotions do not control you. Once I learned the truth of those facts, I felt empowered.

So, to answer the heading of this blog entry: Can there be thanksgiving in illness? Yes! I believe that with all my heart.