Rheumatoid Arthritis: Raising Awareness

What is Rheumatoid Arthritis Disease?  Many hear arthritis and think of the joints which is perfectly reasonable since arthritis does affect the joints.  However, rheumatoid arthritis or RA involves more than the joints, although joint pain and degeneration of the joints is a big part of this disease.  While osteoarthritis is from wear and tear on joints, whether from old age,  sports injuries or other things that can cause the breakdown of the cartilage surrounding affected joints, RA is an autoimmune disease.  Autoimmune diseases involve a person’s own immune system attacking healthy cells in their body.  In a healthy body, the immune system protects against disease and infections that seek to invade.  In a person who has an autoimmune disease, the immune system malfunctions; it attacks healthy cells, mistaking them for intruders, basically turning against its own system (National Institute of Arthritis and Musculoskeletal and Skin Diseases). When a person has RA, the bodies immune system mistakenly attacks the joints.  A person’s joints have a membrane called the synovial membrane.  This membrane contains synovial fluid which helps provide a sort of ‘cushion’ for the joints, lubricating them and keeping the cartilage surrounding the joint healthy. Rheumatoid arthritis causes the body to attack this synovial membrane, causing inflammation, which in turn causes the synovial fluid to over produce (physioworks).  This causes the joints affected to swell and the capsule that holds the synovial membrane and also holds the joint together is stretched, resulting in pain (myDr.com.au).  The inflammation can cause long term damage to the joint, cartilage, and bones.  Here is a diagram showing a healthy joint, a joint suffering from osteoarthritis, and a joint suffering from RA (I found this diagram on News-Medical.net). 

I’ve spent some time focusing on how RA affects the joints but, as I previously mentioned, there is much more being affected besides the joints.  With all of that inflammation running rampant in an affected person’s body, it makes sense that it would spread to affect the entire body.  The skin is often affected as the blood vessels are inflamed, often producing rashes and nodules.  Bones throughout the body can be thinned and become brittle from the inflammation.  The inflammation that RA creates can affect the lungs, the heart, the nervous system, and blood complications such as anemia and blood clots (Arthritis Foundation).  Besides being able to cause destruction and damage to other organs, RA also comes with a vast amount of symptoms that are not limited to joints.  Extreme fatigue is ‘normal’ for a person with rheumatoid arthritis which makes sense when one thinks about what the body is enduring.  Because nerves can be affected by the chronic inflammation, numbness and tingling can occur in the hands and feet.  Muscle aches and pain are common, as is malaise, low grade fevers, weakness, loss of appetite, weight loss, and dry, painful eyes and mouth, also known as Sjogren's Syndrome (emedicinehealth).

Okay, now that we’ve discussed how RA affects the body and the common symptoms that it can create, let’s look at how RA feels.  Every case is different, just as every person is different, so RA can present itself in different ways for different people.  Many people say that living with RA causes them to feel like they have a very bad flu every day.  I can attest to this; every day, my entire body aches like I have the flu or a bad cold. Painsomnia (insomnia caused by pain)  is common with any kind of chronic pain so RA is no exception to this.  It can be extremely difficult to get a good night’s rest (something that is important to help ease RA symptoms) when one is in constant pain that keeping them up and/or waking them up all hours of the night. The fatigue that many people with RA have is a deep fatigue no amount of sleep can cure, a fatigue that can cause brain fog and difficulty remembering things.  Because of the inflammation and low grade fevers that RA causes, many people experience hot flashes, feeling overheated, and heavy sweating often.  Some describe RA as feeling like their body is ‘heavy’ and hard to lift/move, a body filled and weighed down by concrete.  Joints swell up, stiffen, and lock up.  Pain can alternate between a deep and dull pain, a sharp, stabbing pain, and anything in between.  

RA is a disease that encompasses the entire body and can affect every aspect of someone’s life.  Most of these symptoms I’ve listed are symptoms I experience on the daily.  I am thankful that my disease has not progressed to a point of joints locking up.  My joints don’t swell up much and the stiffness I experience is a minimum compared to many people battling this disease.  I do however have what I call ‘rice Krispy joints’.  All of my joints - ALL of them - upon being moved, snap, crackle, and pop like a bowl of Rice Krispies that just had milk poured over it. I am quite familiar with 1 A.M. because lately the pain has been so bad that falling asleep is a difficult task.  My poor husband has to put up with me tossing and turning all night long and getting up in the middle of the night to have multiple hot showers which soothes the pain.  Fatigue and brain fog are constant companions making even the easiest tasks seem enormous.  We don’t go out much because I rarely feel up to it.  Between the constant pain and the fatigue, it is difficult for me to be out and about.  The hot flashes...oh, the hot flashes!  I’ve experienced them for years and it’s become a joke between me and my friends because often those around me will be cold and want the heater on and I’ll be sweating profusely and feel like I’m burning up.  Lately, I’ve discovered that putting my ice pack on my head helps cool me down.  

I write all of this not to gain people’s pity but rather to educate and bring awareness to this disease that affects 1.3 million Americans and an estimated 17.6 million people world wide.  It is predicted that this number will double by 2030 (Global RA Network).  I write this to bring awareness to the many autoimmune diseases that affect 50 million Americans (according to the AARDA.  I couldn’t find a number for those affected by autoimmune diseases worldwide).  Awareness and education on RA and autoimmune diseases is important not only because it recognizes the struggles that millions of people experience but also because those who are educated and aware of the facts are better prepared to get an earlier diagnosis and treatment, ultimately saving lives.  I will end this with a quote from AARDA (American Autoimmune Related Diseases Association) discussing the need to raise awareness of autoimmune diseases (March is National Autoimmune Diseases Awareness month, which explains why the quote focuses on March):

During March, AARDA hopes to educate the public on the top five things everyone should know about autoimmune disease: (1) 50 Million Americans have an autoimmune disease, comprising a major U.S. health crisis. (2) There are 100+ autoimmune diseases including Crohn’s disease, celiac disease, rheumatoid arthritis, vasculitis, and Addison’s disease. (3) Autoimmune diseases “cluster” in families; for example, if your grandmother had lupus, you could be at greater risk for developing an autoimmune disease. (4) Fewer than 13% of Americans can name an autoimmune disease. (5) Autoimmune diseases target women 75% more often than men; and combined, autoimmune diseases are one of the top ten killers of women under the age of 65.  

Increased levels of awareness amongst the general public is more important now than ever before according to AARDA’s President and Executive Director Virginia T. Ladd. She says, "Autoimmune diseases such as multiple sclerosis, type 1 diabetes, and celiac disease have all been shown to be on the rise, but answers as to why these increases are occurring are yet unknown. However, it is imperative that the public be more aware of their own risk factors for developing autoimmune diseases so that, as symptoms occur, they can seek a diagnosis and begin a treatment regimen. Early diagnosis and onset of treatment can make a significant difference in someone’s chances of becoming disabled or suffering organ damage.”

Hopeless, Helpless, Inadequate

If there was only one word I could use to describe how this disease feels, I would use the word hopeless. This disease makes you feel hopeless - hopeless and helpless. These two words sum up my feelings on Rheumatoid Arthritis Disease. Now, I am not hopeless, by any means. I have hope in Christ but that is a different kind of hope, a hope that is certainty in my Savior. I am also hopeful that someday I will go in remission, that someday, somehow, I will find relief from this disease. I know I am not hopeless. However, I still feel hopeless. When you are in chronic pain, every moment of every day, it is almost impossible to not feel this way at least some of the time. My disease reminds me of it’s residency inside my body every waking moment of my life. It reminds me by the dull ache in my muscles and the intense pain in my joints, whether I am walking through a store, laying in bed trying to fall asleep, or simply adjusting myself while sitting on the couch. This disease reminds me of its existence by the utter exhaustion that racks both my body and mind, no matter the amount of sleep I get at night and no matter the amount of energy I have exerted or not exerted (as is more likely) that day. I am reminded of this disease by how well it has made itself at home inside of my body.

. I sit here, on my couch, exhausted, in pain, home from work after only two hours….the only two hours I have been able to work this week. My house is a disgusting wreck...the sink is piled high with dirty dishes, clean laundry is strewn across the living room while the bedroom is piled with dirty laundry. I hate it. I despise the mess. It is embarrassing and humiliating. I am angry I cannot keep up with the housework. I am angry I can barely make it to work each week. I am angry at what this disease has taken from me and continues to take from me. And I am filled with a deep, dismal, hopelessness as I sit and examine my surroundings and ponder my current life. Is this the rest of my life? Will it always be like that? The words of David come to mind, how long, Oh Lord? Will you forget me forever? My God, why have you forsaken me? Why are you so far from helping me, from the words of my groaning? ( Ps 13:1; 22:1). I know my God has not forsaken me, nor has He forgotten me. But, sometimes it can feel like that. There is a reason the scriptures hold so many laments...they are real, they involve the many emotions and feelings that humans experience. They are spoken from the heart in times of distress --- times of pain and suffering, the times in life when hope seems nonexistent. That time for me is right now. . I am reminded of before I was diagnosed and my disease was not quite as rampant in my body. I remember one evening, exhausted and in pain, I pondered on whether I would ever get answers, whether I would ever find a diagnosis. I remember taking a bath and simply spending time, talking to the Lord, listening to the Lord, and thinking deeply about me, my undiagnosed illness, and whether or not the Lord would grant answers and relief to me. It hit me then that perhaps a diagnosis would not be made, perhaps answers would never be found, and perhaps this was the life I was given and the journey I must take. God does not promise healing in this life. Anyone who tells you otherwise has been sold a lie and is selling you a lie. All the faith and prayer in the world will not necessarily heal you; cancer patients still die, coma patients remain in their unconscious state, pain and suffering still remains. God is not a vending machine and He will not always do what we ask of Him or what we would like Him to do. God does promise to heal us after life on this earth and He promises eternal life to those who trust in Him. But we are not guaranteed health, wealth, and happiness this side of heaven (in fact, we are to expect the opposite). . I am reminded now, as I was reminded so long ago, that one night, taking a soak in the bathtub, that it is not our strengths but rather our weaknesses that glorify God the most. It is when I am weak that I find strength in the Lord. My weaknesses show the strength of a God who can overcome all of my weaknesses, all of my feelings of hopelessness, all of my pain and suffering. It is in my His strength and power is weaknesses that His power and strength is made perfect (2 Cor. 12). When I am weak, His strength is all the more evident and powerful. . I am now weaker than I was that night when I pondered my weaknesses and the strength and power of my God. The pain is bigger, the fatigue is stronger, and the feelings of hopelessness and helplessness have grown. But, God’s power and strength remains. His grace is still enough. He is still enough. “At first, I….begged God to remove it. Three times I did that, and then he told me, ‘My grace is enough; it’s all you need. My strength comes into its own in your weakness’. Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ’s strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become. (The Message, 1 Cor. 12:7-10). . I still hope for remission. I still pray for relief from this disease that wreaks havoc on my body, my life, and even my relationships. I am still in pain (and this most likely will not change from any amount of prayer or faith). I am still exhausted. But, I find solace, strength, and power in the One who made me, who loves me, who saved me, and who is and has always been faithful to His people. I am not even sure what my point is with all of this, or if I even had a point to begin with. But I hope that perhaps someone may find comfort in my words, find even a small amount of encouragement in my story, and know that they are not alone. 

Finally some answers!

About three weeks ago, I had my rheumatologist appointment where I finally was given a diagnosis after ten years of battling chronic pain and fatigue.  My rheumatologist looked at and felt my joints and sent me off for blood work and some x-rays.  After some miscommunication with my doctor the next few days, I was given the diagnosis of Rheumatoid Arthritis.  To finally have a doctor listen to me and to finally get a diagnosis for what I have been going through for so long was so relieving and almost surreal.  I have been waiting so long to get some answers and now I finally have some.  However, it was also terrifying to be given a diagnosis, especially a diagnosis that is of a degenerative, progressive disease.  I have spent the past three weeks processing this diagnosis, wrapping my brain around the implications, both good and bad, that come with it.  I was put on a new medication right away that is meant to help with my symptoms and also slow down and hopefully prevent further damage within my body caused by this disease.  It has been in the past three days that I have begun to notice a tremendous improvement....something that has brought me to tears, tears of joy flowing from a heart that is so thankful.  I feel like a new person, a new me.  No, not even a new person, rather an old person....an old me....the me from years ago, before this disease began to take over my life and dictate my life, my every thought, my actions.  I have had energy that I have not had in years and the pain has disappeared to a mere whisper.  I woke up this morning and I felt like a person.  It has been such a long time since I have woken up and felt like that. 

This is not to say that I have been cured completely of all my symptoms.  There is still a disease raging a war inside of my body, it is simply more under control now. My pain has not disappeared completely but if we're being honest, it is not likely that it ever will.  It is however, much more manageable, at least so far.  Yesterday was a rather active day for me, as I cleaned for a few hours in the morning before walking around down town with family and friends at a festival of sorts that our town has every year.  The amount of walking and activity took a toll on my body and I ended up needing to use my cane to help me out.  When I finally went to bed last night, all of my joints seemed to be on fire, especially my knees and I had to ice them.  But, even with the activity and the pain and inflammation that the activity induced, I woke up this morning only slightly stiff and sore and with an alertness and energy that has been missing from my life for so long.  Normally the mornings are rough, as my body is stiff and sore, and I usually awaken with a sort of fatigue induced brain fog so it has been such a wonderful experience the past few days. 

I have a lifelong battle ahead of me as I take on this disease but I have an immense amount of hope and optimism as I look towards the future, a hope and optimism that has been dead for so long, overtaken and choked out by extreme pain and a mummifying exhaustion and fatigue.  I have answers and with those answers, I have knowledge.  With that knowledge, I have power, power over this disease, power to fight back and take my life back from the clutches of this disease.  I now look forward, my head held high, possibly my cane in hand, ready to continue this journey called my life, hand in hand with my biggest supporter and fan, my husband.  I am excited, for the first time in a long time, for what the future my hold.  Come what may, I feel better prepared, even if my disease does progress and create more pain.  I am a warrior and I am ready.