Day By Day

“Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day.” 2 Cor 4:16-18

January was quite a month. The highlight was visiting most of our family in California and having our friend the chef, visit with us for most of the month. The low point was icy roads preventing shipment of my self administered injections for Ra on time, which threw me into a flare that lasted for weeks.

I was able to visit and talk with my sister in law who has battled this disease for most of her life. It helped a lot to discuss it with someone who knows what I am going through and could sort of give me an idea of what is ahead...to spend time with someone I love and trust, who has already been there. It was good to see everyone and I wish there was a way we could see them all more.

As far as Ra and such things go, one of the great things about Internet is that there are online support groups for just about everything. I find them to be useful tools to see if what I experience are common symptoms or not and what might be expected out of different treatment modalities. I have also learned, particularly from individuals who have very active Ra, that one thing that seems to cause great offense, is public misunderstanding of the disease. Lack of public knowledge about these disorders seem to be at or near the top of the list of complaints for many patients, as those with misconceptions can include not just strangers, but friends, co-workers and family members. It can be difficult for a family member to understand why someone might not be able to get out of bed due to incomprehensible pain, when they look quite normal. 

Ra is short for Rheumatoid Auto-Immune Disorder commonly called Rheumatoid Arthritis. The latter term can be misleading as it isn’t osteo-arthritis, which nearly anyone who lives long enough has, as joints wear out from age and use. Rheumatoid is an inflammatory, incurable, degenerative and progressively painful auto-immune disease. 

Auto immune conditions are when the body’s own defense systems become confused and overactive and turn on the body itself, destroying its own tissues, organs and soft tissue as well as joints and bone. There are hundreds of diseases in this category and generally, I have found they are like potato chips, in that people almost never have just one. There are various combinations that seem to evolve. Ra and  Fibromyalgia, Ra and Lupus, toss in Reynaud’s or any number of diseases with odd names and overlapping symptoms and it can be confusing, discouraging and disconcerting as well as difficult to treat and diagnose.

Ra is an inflammatory condition that affects joints, connective tissue and even internal organs and can result in intense pain and in some cases, even death. It is known to sometimes attack heart and/or lungs. Treatment for Ra is a “darned if you do, darned if you don’t” kind of a thing. To obtain any kind of quality of life you must submit to taking drugs which are known to cause a variety of serious and frightening side effects, not the least of which is lymphoma and other types of cancer. It’s a bit like playing Russian Roulette, but we play because it is the only way to maintain functionality and tolerate the pain. 

There are varying degrees of severity and stages of Ra, from the mildly affected and slow progressing and those in temporary remission, to others who find at initial diagnoses they are already in agony to the point of being totally unable to function. Fortunately, I am between the two. I often need assistance and cannot do most of the things I used to do, but if I set my mind to it, on a good day I can still accomplish quite a bit. I have had to set my goals a lot lower and not be too terribly discouraged if I cannot meet them.

It helps not having telephones and other things to interrupt my day. In fact one of the hardest things for me is to try to answer the phone. I can no longer rise or walk quickly enough to catch it and if I do, it’s even harder for me to hear on it.

Another problem with Ra is that there are so many different things that can trigger a flare. Stress is a huge trigger. Therefore I do everything I can to try to avoid emotional and financial stress. Living where we do and being able to simplify my life plays a big part in that. 

It is almost as hard on a spouse to live with someone that has Ra as it is for the person affected. So much responsibility falls on the family and there has to be acute frustration in not being able to really help someone you love, who is in chronic and constant pain. In some instances, a patient may find themselves misunderstood, or even abandoned because of their illness. This isn’t of course, exclusive to Ra. People with any kind of issues can find themselves suddenly alone at their greatest point of need, in today’s increasingly hedonistic, self serving and disposable culture. 

I am one of the fortunate ones. The man I am married to meant it, when he pledged in ‘sickness or in health’. Without complaining about the extra work load when I am unable to feed my animals or do my regular daily chores, he is there for me. He feeds the critters and pulls the milk wagon through the snow and mud because I cannot. He is always encouraging me  and has never made me feel like a burden or less of a person because of my disease. He is a nearly perfect illustration of Biblical marriage and a conduit of God’s love. He doesn’t do this because I am worthy, or because I can do anything to make it worth his while. As does our Lord who created relationship and modeled it for us, he does it, because he chooses to. He knows that love is not something we feel, it is something we DO. You cannot ‘fall in” or ‘fall out’ of love. You either do it, or you don’t.

Sometimes I cannot stand up by myself. Randy will reach down a hand and pull me up until I am on my feet. It is usually a painful process, as the pressure it applies against my hands, wrists and shoulders sometimes feel as though they are all being dislocated, but it is necessary.

Likewise, the Lord has used pain in my life to lift me up to where I need to be. I would never wish a malady like this on any person or their spouse, but I can say, God has used it in my life to good purpose. I have learned new skills, found new hobbies and gained a new appreciation for life. In addition, it is the only way that I could set aside my pride and accept help, as I have always been fiercely independent and have always had an aversion to ‘imposing’ myself on anyone for any reason. There is nothing more humbling than becoming "un-able". Through this experience, I have learned more about the admirable qualities of my husband and the depth of his love and commitment, than I ever possibly could have, had I remained healthy. One never knows how someone will respond until a situation actually arises. As this disease has progressed in my life, it has ravaged both my body and my emotions. Once exceptionally strong for a woman, I have become embarrassingly weak. Prescription drugs have caused rapid weight gain and thinning hair. My skin has suffered. My clothes don’t fit, hands and feet are often swollen and painful. I am loathe to go anywhere because I don’t want anyone to see me like this. I feel old and ugly and tired and worn.

Then Randy comes home. With a wordless look and a smile, he changes everything. I don’t think he sees me the way I see myself. He acts as though he still sees the woman he married and I feel cherished and blessed. He is ever working toward what is in my best interest.

As Randy appears to see what was, God sees also what will be. Both visions are superior to what is and both are clear illustrations of His passion for us. How can I not be looking forward, no matter what this disease will bring?

“For I know the plans I have for you,” declares the Lord, “ plans to prosper and not to harm you, to give you a hope and a future.”  Jeremiah 29:11