Friday, February 1, 2013

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


13 comments:

  1. I just finished reading this and I can't tell you the emotions. The tears worked their way down my cheeks until I had to stop and get a tissue. You see, someone very close to me is going through what you're going through and for a long time I couldn't understand it. I failed to believe her. I began to research this disease and I was ashamed for not believing her. Like you she gets the injections for pain and is experiencing all of the same things; the weight gain, the clothes not fitting and she has pretty much stopped seeing most people. She tries to diet and gets discouraged when it doesn't work and will call me and cry when she can't hold a toothbrush. She is 31 years old and she is my daughter. It is literally tearing me apart. She is my only child. Petey, I am Roseud from the All Recipes site. I would like to thank you for helping me to understand. I will continue to follow your blogs with great enthusiasm. Bless you and thank you for coming into my life.

    ReplyDelete
  2. It is so thoughtful of you to share with me, Rosebud. I appreciate it so much and thinking it helps anyone makes me really happy. I will pray for your daughter, that she will feel purpose in her life and feel His love and presence as tenderly as I do, either through Himself or those around her who love her. Sometimes it really helps to know we are not alone.

    ReplyDelete
    Replies
    1. Yes, it does help to know we are not alone. I pray for her and for you every evening. I believe in its power. I am so grateful to you for every one of your blogs. I look forward to them and getting to know you more. I enjoy your animals, especially those beautiful white dogs. The antics they get up to make me laugh and smile and for that I truly am grateful. I hope its warm where you are. The temperatures here have been hovering around -43 C. There is lots of snow and high winds. I tend to stay indoors more. However, when I need to do my grocery shopping or go to the post office, well thats when it seems to get colder. Ha, ha, figures eh? Enjoy the evening and take good care of you. -Patricia.

      Delete
  3. Wow, Petie what a wonderful piece. I, like the above reader, was in tears by the time I finished your blog. I feel very blessed that the issues I deal with on a daily basis is a pittance compared to what you deal with struggling with Ra. I think arthritus is bad enough. I will definitely keep you in prayer. Sounds like Randyman is a gem. How dare you begrudge him your cherished piece of pizza the other day. LOL.
    Much love and blessings.
    Carol

    ReplyDelete
    Replies
    1. That is one of the really cool things about Him. We can be thankful for when there are no trials, but when they come (and He promises they will) we can be just as thankful, or more so, because its true what He says in that verse Paul wrote, "My grace is sufficient for you, for my power is made perfect in weakness" 2 Cor 12:9-11

      Delete
  4. Your words are deeply intimate and the comments they inspire are full of courage and encouragement. I once got to sing a song for a graduation that ended, "When I speak to the Lord, I say everything is beautiful, He gives me joy, bids me come to Him. He gives me love." A few years later I understood that not everything was beautiful for the writer. That song took on a whole different meaning. It's the same with this blog entry. I once asked my older brother, what do you say to a Christian who is suffering such pain that the strongest drugs won't take it away, and he said, "Revelation says what to say and you can say it too. He will wipe away every tear, death will exist no longer nor will grief, pain, and crying because the previous things will pass away." It must be hard to wait, but in the long run we all do and in the longer run it will be worth the wait. Keep giving us courage, Petey. Lots of people are touched by your faith. Like Arthur said at the end of that play, "...some drops do sparkle." and you're one of those drops. X

    ReplyDelete
    Replies
    1. Thank you so much for that. You've no idea how much encouragement you have been to me.

      Delete
  5. Dearest Petey, you have me in tears again. (Too easy some days.) And I keep thinking what a beautiful person you are. I hope that God and Randy help you to see that every day. Speaking of your Randy-Man he is a KEEPER. :) Thank you for giving me a glimpse into some friends conditions (they seldom say anything, but often have to cancel plans.) I understand so much more now. Praying that things are better soon, with the arrival of Spring and a non-flair/remission period.
    Big Warm Hugs... CAROL DEE

    ReplyDelete
  6. Thanks Carol Dee. You are sweet :)

    ReplyDelete
  7. no one could say what u said better and X is right about the comments. we've built a kinship with Randy tho we've never met him. he's a pretty lucky guy. xito paints with words and sees with his heart n i feel things but we have the same impression of u. thanks for the comments on the poem and what we say is true of u. God bless u petra-lady. love...daniel

    ReplyDelete
    Replies
    1. Thank you daniel. You guys have so enriched my life.

      Delete
  8. You are beautiful Kim.

    ReplyDelete
  9. All of you, and your comments, really touch my heart. Thank you all, for who you are and for being God's arms.

    ReplyDelete