Pain Is Not Permanent

“...whatever things are true, whatever things are noble, whatever things are just, whatever things are pure, whatever things are lovely, whatever things are of good report, if there is any virtue and it there is anything praiseworthy, think on these things...”

Phillipians 4:8

I woke up in the morning wracked with pain. Every joint, every muscle in agony as I went from the chair I’ve had to sleep in, to the bathroom. Heading back out, I knew I couldn’t manage the trip back to the living room. I painfully climbed into bed, but was unable to pull the blankets over me, as my hands were unusable. Randy, seeing my plight, tossed them over me on his way out in the morning.

An hour or so later I ventured to get up again. Only slightly stronger, I shuffled to the kitchen for coffee unable to cope with the painful sensation of my feet rising and falling on the floor. As snowflakes fall silently outside the window I sip my coffee and appreciate the heat radiating from my cup to my aching hands. This is not the life I bargained for.

If I look in the mirror, I won’t recognize the woman looking back at me. The puffy, overweight, lumbering mess isn’t the quick moving, athletic over achiever I have always been. These aren’t my hands, puffy, swollen, stiff with papery skin. Those aren’t my clothes in the closet, they are made for someone larger. I don’t want to see anyone, and I don’t want to be seen. I drown in misery, tears falling freely. 

Agitated, I pick up my Bible and start to read. I’m graciously reminded that I didn’t ‘bargain’ for anything. My life is a gift, both the the triumphs on the mountain peaks and the darkest places in the valleys. The journey I have been on is my own, but I am not alone. There are many who take it with me, some competing against me, others cheering me on, and yet others who just share the joys and pains of this place on the path, this space in my life. But there is also One who has walked alongside me the entire way. He’s been this way before and knows the pitfalls and dangers I will face, someone who has been to far more painful depths and knows also the ultimate heights of joy. He doesn’t always carry me, but usually lets me choose my own way, sometimes stumbling, sometimes running freely. When I fall headlong and sputter and spit dirt of failure out of my mouth, sometimes I am overcome with rage, or with sorrow. But soon I push past it and cry out for help, or simply raise my eyes and always, I find He is there, a Holy hand stretched out, ready to help me up again. This has been such a day.

One of the Maremmas pushes his head up under my elbow and gently rests his head on my leg. Often the hands and feet and heart of Jesus come to me wrapped in fur. With eyes full of concern and compassion he looks at me and touches his cold wet nose to my tear dampened cheek. I hug him and it feels better, even hurting. 

I push through the pain and this morning I am rewarded by it. The world awaits outside and there are new baby lambs, baby goats to marvel at. The miracle of life unfolds before me even as mine seems to fade. This day will get better, even if tomorrow does not. Each step of this journey brings me to a new and renewed life, one that will not be full of pain. I will see lost loved ones and best of all I will see HIM face to face. I can do this. I’m not the first, but I am also not the weakest. I can do this. I can keep walking until I too, reach Home.

There is much I can do. Milk to process, cheese to make. It will take some effort but it will be worth it. I have to keep trying and pushing forward.

The sun is breaking through the clouds even now and I can see my way and I am strengthened. I know who I am, because I know who He is. For now, that is enough.

“My grace is sufficient for you, for my power is made perfect in weakness”. -2 Cor 12:9

Joy in the Little Things

“Blessed are the poor in spirit, for theirs is the kingdom of heaven” Matt 5:3

Lately it seems turmeric tabs have really been helping me. I still had a little flare when the last storm hit but nothing like I usually experience and certainly nothing close to what I went through in December and January. I tried backing off of carbs and gluten but not only did it not help the inflammation, I started feeling really lousy. I’m sure it helps some people, but clearly, it isn’t the answer for everybody and definitely not for me. So back to regular eating and staying on the turmeric. Just as well. I hated watching everyone else eat my cinnamon rolls while I had an apple at breakfast.

As I had mentioned in an earlier post, there are several things that can trigger a flare. Stress and emotional conflict are usually right at the forefront, outside of barometric changes for me. As many of you know, my father recently passed away. It was devastating to our family. I was closer to dad than I was to my brothers and sisters due to a gap in ages, so I am still trying to adjust to the idea he is not going to be there anymore. I still haven’t gotten used to Mom being gone. Being an orphan sucks, I don’t care how old you are.

The weather has been improving. It’s been above freezing by day but still down in the 20’s at night so it has made for some very icy conditions to walk in. As rough as mornings can be, the rest of the day I have been feeling pretty good and taking full advantage of the fact, multi tasking away and trying to be as constructive as possible.

I have found that on a decent day, there is much I can do. Making cheese is one of those as it takes very little in the way of muscle power to do. It just requires a LOT of sitting and waiting, which is perfect for someone with Ra type limitations. I’ve done a little better than decent lately, so I have also been able to make butter, ghee and today I’ll be making soap and bread...which is another thing I can sometimes even do during a flare, if I can just walk. My stand mixer does most of the kneading for me so pitching ingredients into the bowl is about the height of effort. 

On really good days, I try to cook and can meals so on the days I am in too much pain, we can just grab a jar off the shelf and perhaps a loaf out of the freezer and still have a good, home cooked meal.

Some of those meals would be venison, lamb and beef stews, chili, multiple homemade soups, shredded chicken, pulled pork, beef dip and shredded taco meat. The meats are great in sandwiches and salads and very easy to can up.

I also pre-measure soap and lye water on good days, so I don’t have to worry about those days when I have ‘cognitive’ issues and wander around in a ‘fog’. It guarantees everything will be consistent that way.

Small things tend to bring great joy. The soap and cheese-making, and even the bread baking take up a lot of the space in a very small kitchen. There is a water hookup in the utility room where the freezers are and Randyman found a freestanding sink in the barn so I can do all the soap and cheese making in there, leaving the kitchen free for meals, plus I can safely stop in the middle of something if I need to, without starving everyone until it’s complete. Between the sink and finding 4 more tons of hay we can buy to get the critters through until spring, has made me a happy, happy camper. 

Good days and bad, I find myself leaning harder and harder on Him to get me through things and He has yet to let me down. Here's to grace and better days ahead.

“I will not leave you as orphans; I will come to you” John 14:18

Undone

Trust in the Lord and do good; dwell in the land and feed on His faithfulness. Delight yourself also in the Lord, and He shall give you the desires of your heart. -Psalm 37:3

Randyman’s family is coming to visit this weekend. The house has been an unmitigated disaster, due to my over a month-long flare and what seems an endless  struggle against pain and fatigue. What I do accomplish in a day’s time is done between frequent breaks and bouts of rest as my back begins to spasm or exhaustion threatens to overwhelm me. There isn’t a lot of ‘staying power’ connected with this disease. I often feel like there is a dark cloud over my life because of it.

My niece has long urged me to try taking turmeric. It’s a spice, yellow in color, middle eastern in origin. It has anti inflammatory properties and of course, prior to modern medicine, it was always natural substances that were used to cure and to treat,so although I know it isn’t a cure, I finally remembered to order some gel caps online, as I cannot stand the taste of it in liquid and needed to get enough down each day to see if it helped.

It’s helping a LOT. Although each morning, my hands and feet have been quite swollen and painful to use, it goes away quickly once I push myself and the better part of the day I am fairly pain free and alert. I broke up the house chores I wanted to get done into 7 days. We had a new freezer come in so it added a LOT to the work load, driving the 4 wheeler back and forth from the boss’ folks house where the meat was, organizing it and finding a home for the things that used to be in THAT space...which of course meant EVERYTHING in the house got moved. We live in a house of no cupboards or closets so storage is always a problem.Everything in it is pretty much in plain view (and dusty) which poses a huge challenge for me, having never been the domestic nor artistic type. Not so much that I don’t want to be, I just never was before. A lot of prayer went into this week, because before it ever started, I was over come and overwhelmed with just how I was going to get it all accomplished. Cleaning the house was not the ONLY thing that had to be done. There was a large chunk of suet, and 3 huge leaves of lard that had to be rendered right away as they were not going to fit in a freezer and the outside temps are warming up during the day now, so it would all spoil. So add rendering tallow and big, greasy pots to the equation each day, on top of cleaning, milking, processing milk, and cooking and there is a pretty hefty day’s work for anyone.

So far so good. It is already Thursday and I only have the bathrooms, our bedroom and a bit left in the living room to finish. I think it is actually doable.

During my breaks, I ponder the above referenced verse, about God giving us the desires of our heart. I discovered this truth several years ago and found that like many things to do with the Lord, it was not as we might think. (His thoughts really ARE higher than our thoughts) To the unacquainted human heart, these words would seem to suggest that merely for the gift of your affections, God would become a cosmic Santa and grant you all the things you might want.

Even in our most flawed and reprobate state, we know that would not be a good thing. Just as allowing children to gorge themselves on a diet of straight soda and candy would be foolish and unloving, so would God be amiss to grant our every wish, greedy and undiscerning as we tend to be.

Nevertheless, the verse is true. We put the emphasis on the “give” but he put the emphasis on the “desires”.  While He does not grant us every wish, He does give us the DESIRE for the things He wants to give us. A huge difference in theory but in practice it works perfectly. Even more than perfectly. Better than perfect, even. 

Realize that whatever you have a passion for, whatever things draw your heart, those are the things that inspire you. Inspire, literally means “God breathed”. So, God breathed those desires into your heart and He will lead you to them if you are willing to follow.

Whereby I wanted to ride forever, have big horse barns, nice trailers and trucks, breed and raise expensive horses and all that goes with it. I’d already had a pretty successful run of training and teaching and competing for a couple of decades. I enjoyed it, but it wasn’t totally satisfying me and it was stressful a lot of the time, dealing with colts and the public.

His desire was to bring us here, to this ranch, among this ranch family who treats us as their own, provide a ‘backyard’ that is hundreds of square miles, a milk cow, chickens, goats and sheep and my incredible Maremma dogs. While I have been ‘indisposed’ by this disease, I have learned to make all my own dairy products, provide all our food from scratch ingredients, garden, sew, crochet...He gave me an endless number of things to do that I love doing and the means by which to learn  and practice it. If I had a choice now, between what I wanted and what He wanted to give me, there is no doubt, I am excited about His choice. He knows better than I do what I want as well as what I really need. We don’t always agree, but He is always right. 

For the better part of this past week I was able to be insanely busy and get a lot done. Today, there is another snow storm coming in and the barometer change has caused the pain to return. It’s in my hands, feet and back, which are what I have used so much this week. It’s not as deep and widespread as it can get, so I feel fortunate that there is still improvement in the amount of inflammation I usually have. 

Instead of finishing, as I had planned, I will submit and enjoy the affection freely given by my big ‘polar bears’, (Our Maremma Livestock Guardian dogs). 

Cletus oozes (yes, oozes not eases...he is so fluid and slithery when he sneaks up onto the couch) his 120 lb frame up next to me and tenderly presses his head against my chest. He can tell I am a little down today. As I bury my fingers in his thick fur I can feel myself relax and a smile finally comes, in spite of the pain, as I think about how wonderful it is, to have the love of a small child, or a dog. They love without condition or forethought. It always makes me feel better when they are around. 

I won’t be able to complete the list of things I really wanted to get finished before our family comes, but there is still one more day. He may yet help me do it...and if not, the world is still turning and no one in heaven is wringing their hands over it and this storm too, shall pass. If it’s something I really need to get done, He’ll help me.

“Our greatest fear should not be of failure but of succeeding at things in life that don't really matter.” -Francis Chan

Are there things on your want-to-do list that you have had to just let go? How did you feel about it?

Commit your way to the Lord, trust also in Him and He shall bring it to pass. Psalm 37:5

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

To The Mountaintop

"Rejoice with those who rejoice, weep with those who weep." (Romans 12:15)

Having spent most of my life as sort of an athlete, who put in 10-12+ hours a day at a job I loved, starting colts and training show horses, I understand the difficulties of accepting limitations put on us by disabling disease. It’s hard sometimes, to understand why I can no longer do the things I previously did without effort or thought. I have ranted, raved and shed tears, like most of us who suffer from similar maladies. There comes a time when I feel rage and bitterness fill me, often followed by hopelessness, but because I  have a relationship with my Savior, I find myself always moving back to acceptance and even joy. He always brings light to the darkest places, even when that  place is my heart.

This blog is different from the others I publish. This is about my journey with pain and disappointment and hopefully, the impact faith has on it. I shall be brutally honest with my feelings as this is as much a therapy for me as anything else it may accomplish. I hope that others who are walking this same path will join up with me that we might walk it together, as it's always nice to have someone who can understand your trials.

Saturday, January 26, 2013

So far, to date, I have been diagnosed with Rheumatoid Autoimmune Disease, Psoriatic Arthritis and Fibromyalgia. I never saw this coming. It seems like one day I was on top of the world, all my horses were winning,  my barn was always full and I had energy to spare so I could enjoy my family, my friends, my garden and my home, which was my dream home. The next thing I knew, everything had pretty much turned around. I was in pain, weak, suffering from balance challenges, and life as a whole got ugly. There was a rift in the family that still leaves me feeling as if part of me was amputated, and we lost our home. I have gone from riding 10 hours a day to maybe riding 10 days a year. But God...those two words define my life. But. God. As in " -But. God.-meant it for good." (Gen 50:20)

"But. God." brought us to this ranch. When I can ride, it is a million times more enjoyable than any riding I ever did before. We are in a new season of life, just me and Randyman and got the opportunity to learn more about one another, since when we married we were an instant family with 4 children and things did not all go smoothly. The disease has limited my past activities and encouraged me to learn new skills, so now, instead of cleaning stalls and saddling horses, I am growing our food, making everything from scratch, making soap, learning to sew and taking the opportunities presented to me as I choose. The disease, though devastating, has also freed me to live a fuller life. I would love to do without it, but unfortunately, it is the only thing that would have brought me to this point. I have never known God to take away, without giving back something valuable in its place. I wish the rift in the family would heal, but even that I have to trust to His good judgement. Sometimes growth is painful.

Our friend Afif leaves today. I am saddened by this as he is a good friend and fun to have around. He has also been an enormous help and encouragement this past month, doing most of the cooking and making sure Randy has breakfast in the morning. I have been in one of the worst flares yet, all of January. I think the fact that icy roads prevented the delivery of my injection until a week late, triggered it. 

Today the sun is shining, but I awoke with terrible pain in my back from an altercation with EmmaLouMoo last night while milking, and my feet are terribly swollen and painful, like they used to be 2 years ago before the Simpone injections. I feel the pain moving into my wrists, even now and the fatigue is once again taking over. It comes over me like a cloud covering the sun, suddenly and completely. It’s all I can do to sit up. I will have to return to this later.

I used to accomplish so very much with every day. I could never sit still. Now, I have no choice. I spend the greater portion of every day sitting, on the computer, because I don’t have the strength to do the things I really want to. I miss riding everyday. I miss training colts. I miss following the boss’ kids out across the range and following cattle all day. Being confined to the house is torture. But I have my horses still, so when I am able, I will ride. Even if its just a little ways. I have my sheeple and chickens, and my milk cow. And of course the Polarbears and Cider. I could not do without them.  Today, somehow, I will find the strength to sterilize jars and make new mother cultures for the buttermilk, yogurt and clabber. I made a gallon of each this week so I should be good to go.

I hope I can also make some bread for the freezer (for those times I am not well enough) and render some lard. God willing.

As soon as the fatigue passes, I will try to focus on the Lord. All that I am still able to do, is His gift to me. He did not afflict me with this disease. I don’t know His purposes in allowing me to have it, but I will trust Him with it.     

Even in pain and disappointment, I have so much to be grateful for. I have also learned that gratitude and discouragement cannot inhabit the same space. Reaching for the gratitude and joy that only Christ can give me will evaporate the dark clouds in my heart, anytime I am willing to let Him. Sometimes I refuse, and exercise my right to be childish and 'fish-wifey' and ungrateful, but He always woos me back.

I managed to get my cultures made for my milk products. Buttermilk, yogurt and clabber. This will allow me to make a lot of things, like cream cheese, sour cream, hard and soft cheeses and more. It always makes me happy. Having real food, fresh from the source is not only better for me because of my autoimmune problems, but it makes me feel that my life is special because few people are able to enjoy such things.

The pain comes and goes. Sometimes it totally envelopes me, but I honestly find that refocusing on Him helps me to see that mountain top, where the light is always shining and the darkness of the valley will be far behind me. A dear friend once told me that the darkness we sometimes find ourselves in, is just the shadow of His wings. My experience is that she was right. He's always been right with me. I need only to whisper His name.