"Why are you cast down, O my soul? And why are you disquieted within me? ps 42:5 a
I am so glad I have been canning when I am able. Several days this month, we have had to rely on jars from the pantry as I experience painful flares that just won’t let go. I have been fortunate that some afternoons, the pain eases up for a few hours and I am somewhat functional until bedtime. Then the cycle of pain begins again. This has been a really difficult year to date. Most of it has been spent agonizing and feeling crushed under the heel of this disease. Depression has been a frequent visitor and it gets more and more difficult to evict him from my heart and home.
I have always lived an isolated life. I was raised pretty much apart from my siblings as they were so much older, they were out of the house by the time I really needed them. At the same time, my folks divorced and my grandfather, to whom I was very close, moved to a “retirement village”. I never really knew any other life than being somewhat solitary. That has always been all right with me. I love my family and the few friends I have made. My days have nearly always been spent alone, working horses or down cleaning the barn until we moved here to the ranch. I finally had someone to ride with and loved what we were doing, moving cows, covering miles of scenic country everyday, learning the things I had always wanted to learn, but it didn’t last long before I lost the ability to do what I most loved and was once again, alone for most of my waking hours.
I contented myself with a milk cow, goats and sheep and learning new skills, looking forward to the days I'd be strong enough to ride. I committed myself to baking all of our breads and making all of our dairy products, growing most of our vegetables and canning produce and meals. The best and most important part of my day is spent with the animals, as I have never been an inside, ‘domestic’ person and even being a loner, I still need affection and companionship. All my life I have had a need to be outside, doing something. That isn’t possible anymore. I'm relegated to the house more and more. My greatest fear is the day I have to let go of all my animals because I can no longer care for, or interact with them.
I had a serious back injury in 1989 and after surgery, the recovery was long and grueling, but I knew I WOULD recover. I did recover. I fought through the pain and weakness, with sweat and tears and I broke and trained horses for another 15 years and produced some of my best work.
As these autoimmune issues began to manifest themselves, I lost more and more function. I vowed to make another comeback, I fought to get stronger, but mind over matter doesn’t always work out like we hope. Denial has passed and I accept I have a degenerative, incurable disease that is quickly progressing, doing permanent damage and ravaging my body. It’s painful as well as debilitating. I don’t have the incentive of knowing I can beat it, this time. I don’t have the hope that I will ever recover, because I won’t. Not on this side of heaven.
As the barometric pressure has jumped and bounced all this winter I have had the sensation of being beaten, again and again. It becomes very hard to ‘keep my chin up’, as they say.
As the pain and reality become overwhelming, I feel the absence of someone to talk to, someone who could listen, someone to touch. Someone to share the cries of my heart.
I appreciate all of you online who pray for me. It really does help, knowing there are people who stand in the gap.
I apologize as this is not what I consider an ‘edifying’ entry. Sometimes a person just has to pour out how they feel, even if it isn’t pretty.
For those who also suffer, know you are not alone.
For those who know someone suffering, I hope you can understand how much they need your support. Not your suggestions, or the latest ‘miracle cure’. They don't need to be told how they should change their diet, or exercise. We’re doing all we can just to survive. Don’t for one minute assume there isn’t something we haven't tried, or would be doing if we were able. I’ve heard of people being told by friends and family they should stop taking the radical medications prescribed for us, because they are dangerous and don’t seem to do much good. Please understand that the only hope we have in taking these medications is to try and slow down the destruction and hopefully prolong our lives. None of them will cure us. Not taking them will almost surely shorten our life as so many of these diseases, such as this one, attack soft tissue, and organs as well as joints. Sometimes a shortened life seems like a better option, if it wasn’t so much more painful without the medications. Chronic pain is chronic. It's invisible and some days it doesn't wield the power that it can, but it is always ready to rear up and strike us down again. In my experience, every episode is more intensely painful than the last.
Encourage your person. Be there to let them cry. Listen. Love them. Help them. That is all you can do.
Help them hang on until the shadow passes.
"Hope in God, for I shall yet praise Him for the help of his countenance." ps 42:5 b
Kim, my heart goes out to you and you are so in my prayers... I am having a lot of joint pain and it has gotten worse... I have good days and bad days... I can't say I know how your pain is because I don't and I can say that its very painful with just what I have to dill with... I don't have what you have and I do pray that someday that there will be a cure for your disease... I will keep you in my prayers and God bless you... Love ya Kim...Babs...
ReplyDeleteThanks Babs. I am sorry to hear you are having pain too. It will be good to give up these bodies for ones that don't decay. Looking forward to that day.
DeleteSorry to read this, but I understand it. My mom, her sister, and my grandfather all had RA. I have fibro. I hate people who tell you what you should be doing....I have brothers like that and they are free of anything like that.
ReplyDeletestrange how people who should know better, don't. So sorry to hear that you too, deal with painful auto-immune disease, Catherine. I wish you the best!
DeleteKim, I'm so sorry that you are in that dark place of pain and loneliness. I wish I could give you a measure of strength and health. Sometimes it seems that prayers are weak and ineffectual, but I know that isn't true.
ReplyDeleteGod honors them and it's the ENEMY who wants us to feel helpless in our effort to give assistance in the only way many of us are able to. This life is just a smoke and a vapor. I believe you are accomplishing much more than you may ever realize with this blog, and that many who read it will consider God and His truth in a way they might not have without your frank and honest words.
I don't know what you are going through, I can only give it a good guess, but I have never been to that place of knowing there's only more of the same in front of me. I would like to give you a familiar verse, Numbers 6:22 -"The LORD bless you and keep you, the LORD make His face shine upon you and be gracious to you. The LORD lift up His countenance upon you and give you peace."
Praying for the Lords sunshine to be poured on your soul.
Kristi
Thank you so much, Kristi for your words and prayer. Your encouragement goes a long, long way!
DeleteWell, Petie I am not able to relate to what your dealing with and I feel blessed that I am doing as well as I am. I have arthritis in every joint in my body and also have neuropathy in my feet and legs. Every step I take the bottom of my feet feels like I am walking on rocks, now the neuropathy has traveled up into the thighs and I have no feeling in my legs. They are numb. I just had cataract surgery and need new glasses but I am unable to make the 3 block trek into LensCrafters located in the mall to order new glasses. I made it once and they are holding the frame for me until I come back in but I have realized I cant make that trip again. I will have to find another company that handles my insurance, and easier for me to get too. It sucks when one is in constant pain and knows the next day won't be any better than the last. I am on double Vicodin and some days double Tramadol in order to get 50% relief. Even on meds we still hurt. I agree it's hard for one to really realize the extent we suffer when they haven't walked in our shoes. I rather suspect you would rather walk in my shoes any day..and I would rather walk in someone elses shoes who doesn't have neuropathy. I wish you well Petie. I know from your posts things are not getting better. Your always in my prayers. Take care, God bless. I love ya kiddo. Carol I will add your name to our prayer list at church. One can't have to much prayer.
ReplyDeleteCarol, I am so sorry to hear you too are in this shadow. I will do the same and lift you up in my prayers that He will give you relief, rest and purpose in the pain!
DeleteDear Sweet Petey,
ReplyDeleteMy heart aches for you. Please feel my arms around you and my tears with yours. I so wish I could do more. But learned a long time ago the best thing I can do is hold a hand, hug tightly and listen. I can offer no advice and no cures are mine to give. I pray for you and all who suffer to feel God's loving embrace. Curently I have a dear firend whos husband suffered a broken neck that has left him paralized from the chest down. when we meet all she wants is a hug. I have offered to anything ot help out but it is the hug she craves most. Just this week I had a co-worker diagnosed with stomach cancer. I ran into her unexpectantly at the gas station. Neither of us could find any words, just hugs and tears. She said that was what she needed most.
Maybe spring and summer will bring some stable weather and some sunnier days where you can get out and really enjoy your furry kids.
Big Hugs and much love, CAROL DEE
Thanks Carol Dee. Amazing how fragile we are and how it takes so little to make a difference!
DeletePetey, I am so sorry this has been such a difficult season for you. I am very familiar with Auto immune disease as my husband suffered with Lupus for 13 years. He also had Transverse Myelitis and there were times he couldn't get out of bed. 6 years ago he was diagnosed with Cancer and it took his life in a very little time. We had 50 happy years together despite the disease and set backs and I would not trade a day with anyone! I know and you know our God knows our pains and someday we will have new healthy bodies! My love and prayers are covering you today and always! ((((hugs)))))
DeleteGinny
Ohhh, love and hugs to you. It amazes me how much you are somehow able to do with the complications your body has thrown your way. Please know that your posts always brighten my days, and encourage me. My beautiful hubby of 28 years died last summer of cancer, after fighting tooth, fang, and claw for a year against it. Each time I read about your daily life, and your animals, and see your beautiful pictures, I lift my chin up and always feel better. So, thank you for that.
ReplyDelete~~Lori
I'm so sorry to hear of your loss, dirt lover. I am glad that any thing I might say or do could bring something positive to your day, thank you for sharing
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