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Today wasn’t a very good day. Just turning over in bed was difficult and painful. Wrap your hands in about 6 layers of gloves, and put splints on your wrists and elbows so they don’t bend well – then try to brush your teeth with a Sonicare electric toothbrush. And fix your hair. I should have asked for help – but I couldn’t bring myself to do that. So some of my teeth were ignored and my hair didn’t get brushed. Just “combed” it with my fingers – kind of – and stuck a barrette in it. By that time I was so exhausted, I couldn’t even get dressed – managed to put on a housecoat, and slide into my Crocs.

Pink Cotton Candy

Pink Cotton Candy

Leaning heavily on my cane, I limped into the living room and deposited myself into my recliner. Himself waited on me hand and foot, despite not feeling well himself. He even made some cotton candy for me. [Did I forget to say Himself bought a cotton candy machine so he could make it for me, fresh? Such a loving, thoughtful man!]

He had also made Raspberry Tart cookies for me for Valentine’s Day. But today, just for a change, I put Black Current Preserves in mine. Delicious.

I read texts from Church and prayed a bit. Now, as bedtime approaches, the pain and fatigue weigh me down. Rheumatoid Disease is a vile disease. Although I try to accept my condition, and to trust in God, I really feel like shaking my fists in the air and screaming, “Give me back my life!”

Then I remember:

“Our Saviour and the God-bearing Fathers teach that  our only concern in this life should be the salvation of our souls. Bishop Ignatius says: ‘Earthly life — this brief period — is given to man by the mercy of the Creator in order that man may use it for his salvation, that is, for the restoration of himself from death to life.’ “

And “we should not dread any human ill, save sin alone; neither poverty, nor disease, nor insult, nor malicious treatment, nor humiliation, nor death” (St. John Chrysostom, On the Statues), for these “ills” are only words; they have no reality for those who are living for the Kingdom of Heaven. The only real “calamity” in this life is offending God. If we have this basic understanding of the purpose of life, then the spiritual meaning of bodily infirmity can be opened for us.

Yet, it is difficult to see how sickness can be a sign of God’s care for us — unless, that is, we understand the relationship that exists between body and soul. Elder Ambrose of Optina Monastery spoke of this in a letter to the mother of a very sick child:
“We should not forget that in our age of ‘sophistication’ even little children are spiritually harmed by what they see and hear. As a result, purification is required, and this is only accomplished through bodily suffering….You must understand that Paradisal bliss is granted to no one without suffering.”

So I work on accepting my suffering as a step toward my spiritual purification. And I am grateful to God for this time I am allowed with my husband. Despite pain, despite feeling really ill, I turn again and put my trust in God.

On one occasion a woman was brought to St. Seraphim of Sarov. She was badly crippled and could not walk because her knees were bent up to her chest. “She told the Elder that she had been  born  in  the  Orthodox  Church  but,  after  marrying  a  dissenter,  had  abandoned  Orthodoxy and, for her infidelity, God had suddenly punished  her….She could not move a hand or foot. St. Seraphim asked the sick woman whether she now believed in her Mother, our Holy Orthodox Church. On receiving a reply in the affirmative, he told her to make the sign of the Cross in the proper way. She said that she could not even lift a hand. But when the Saint prayed and anointed her hands and breast with oil from the icon-lamp, her malady left her instantly.” Behold, thou art made whole; sin no more, lest a worse thing come unto thee!

This connection between body and soul, sin and sickness, is clear: pain tells us that something has gone wrong with the soul, that not only is the body diseased, but the  soul as well. And this  is  precisely  how  the  soul  communicates  its  ills  to  the  body,  awakening  a  man  to  self knowledge and a wish to turn to God. We see this over and over in the lives of the saints, for illness also teaches that our “true self, that which is principally man, is not the visible body but the invisible soul, the ‘inner man’“ (St. Nicodemos of the Holy Mountain, Christian Morality).

Although I did not marry a dissenter, I am aware of many of the reasons I need to repent. Great Lent is near, and the Glorious, Bright, Holy Pascha at the end. Healed or not, this is what I dream of and hope for. The Pascha of our Lord. And the eventual time when Himself and I go to meet our Lord – with no more pain, no more fatigue. This is my focus for Great Lent.

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Various heirloom tomato cultivars

Various heirloom tomato cultivars (Photo credit: Wikipedia)

I started gardening recently – well, started trying 3 years ago. This year, however, I have eleven – 11!! – tomato plants in containers on the deck! Yow! Either I’m “getting it,” or I’m crazy! I have 3 Black Krim tomatoes, 1 Siberia tomato, 1 Red Beefsteak tomato, 2 Big Boy tomato, 1 Super Sauce tomato, 1 Better Boy tomato, and 2 Mortgage Lifter tomatoes. (The first Mortgage Lifter plant I ordered arrived looking sick – all yellow and wilted – so the company sent me a new one – but, surprisingly, even with my negligent care, the sick one survived! I probably should send the company back it’s $5.00!)

I started 1 of the Black Krim from seeds, as I did the Big Boy, Super Sauce, and Better Boy Some are kind of sickly, and others are doing fairly well. I had started a Roma, a Super Beefsteak, a Big Beefsteak and a couple of others, but they did not survive – SIGH! Probably just as well – I don’t think I could have dealt with 18 tomato plants!

The Red Beefsteak is nearly 3 feet high (counting the container, I’m dealing with a plant 4 feet tall)! The Siberia is nearly that tall. The Siberia already had a little bitty green tomato on it. Wow! Both the Siberia and the Red Beefsteak have several more blossoms. I’m trimming off little “suckers” as they form. According to what I have read, this will increase the blossoms and the “sets.”

Now,  how do I manage both my disease (Autoimmune Disease) and my developing garden?? Interestingly, this new hobby is making me a little more energetic! Usually getting out in the sun for any length of time exhausts me, but this time, although I am very tired when I stop, once I have rested I have a little more energy! Maybe all this time the people who talk about Gardening being good for you! Even though I do strain my back as I work, my back doesn’t ache as long as it used to.

This is not a remission. There have been days when I haven’t been able to go out and water the garden at all – the Ol’ Curmudgeon waters it for me on those days. But bending, planting, transplanting, digging in the buckets, moving soil, and containers around have not made me flare! Going into the garden for a few minutes (say 15) gives me much more than it takes from me. So I’ll continue with my gardening. My pain is less, my energy is more – DANG! This is working better than the meds have, so far!

Did I mention that I’m also growing spinach, leaf lettuce, basil, oregano, thyme, onions, strawberries, mint, chives, rosemary, parsley, dill, and a little Nigella Sativa (Black Cumin)? They are in the planter containers Himself built for me so I don’t have to stoop. Hmmm, if he built a platform for the tomatoes … they would end up being too tall for me to handle. Guess I’ll need a potting bench one of these months / years soon!

English: A cherry tomato and a beefsteak tomat...

A cherry tomato and a beefsteak tomato, showing the diversity of size among tomato varieties. (Photo credit: Wikipedia)

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Tracy Rydzy over at Living With Chronic Pain has a GREAT blog post today, and I just have to share it with y’all! What NOT to Say to Someone in Chronic Pain lists 8 things that are not only not helpful, but actually can be harmful to a person living with chronic pain.

Edvard Munch: The Scream

Edvard Munch: The Scream
For many with chronic pain, this painting summarizes the way we feel!

I’ve had people say each of these things. The people were friends, were well-meaning, and intended to offer support and kindness, but to the contrary they ended up making me feel worse about myself, to doubt God, and often to end up in more pain from the tension sparked by the remarks.

So, please, my friends, take a hint from Tracy! Please, stow those comments (and others like them) in your “Do Not Say” file!!

Toni Bernhard at Psychology Today‘s Blog Turning Straw Into Gold listed a bunch of things TO say in her post: What Those With Chronic Pain or Illness DO Want to Hear.

Positive things are so much better than negative things – don’t you think?

Related Articles:

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RA Warrior posted this topic to HER blog, so I decided to post about this topic to MY blog – from my point of view.

What is it like to have RA? In the middle of the night, I wake up in the middle of the night and I have nails being pounded through my toes, my feet, my ankles and/or my hands. I try to be quiet, my husband needs his sleep (heart and lung problems), but eventually he wakes up anyway and “reads my body.” Don’t know how he does it, but he knows exactly where I’m hurting without my telling him. He knows if I’m hurting even when I’m asleep. He gets up and gets a pain pill and a glass of milk for me, then he lightly rubs the areas that are hurting worst, and then holds me while I cry until I go back to sleep.

English: http://rheumatoidarthritis-symptoms.c...

English: http://rheumatoidarthritis-symptoms.com – Rheumatoid Arthritis in the hands (Photo credit: Wikipedia)

What is it like to have RA? I am sitting in my recliner with my feet elevated, dozing a little. Suddenly I feel like a burning poker has been pushed into my shoulder. I didn’t move it or anything, and the sudden onset startles me as well as torturing me. I don’t dare move my shoulder, so I use my other hand to take yet another pain pill with some warm tea. Eventually the pain subsides a little. Oh, yeah – tomorrow is methotrexate day. Maybe this attack is because I’m at the end of that MTX cycle? I don’t know. I never know.

What is it like to have RA? I’ve been looking forward to my Red Hats meeting for 4 weeks. It will be at my favorite barbecue place, and it’s a Luau! What fun! The morning of the event, I get out of bed and nearly fall when a sledgehammer hits my right hip. I put some ice on it, and take a pain pill. As it gets closer to time, I realize I won’t be able to go – again. I make the call they are so used to getting.

What is it like to have RA? My birthday party, planned by my children and grandchildren, which I have looked forward to for 2 months, is that night. I woke up feeling vaguely nauseous, but take all my pills anyway. The nausea increases along with heartburn, and I resort to Tums and things settle down some. I am able to get dressed and enjoy the party – from my wheelchair. Which means I can’t move easily from room to room to get to talk to everyone. What a bummer! But I do get to visit and chat with two friends who stay after everyone else has left. I “hit the hay” 2 hours later than usual, and am so keyed up I can’t get to sleep for 2 more hours. It takes me 5 days to recover.

What is it like to have RA? An hour ago, I dropped my cellphone. My hands are too sore to use the “grabber,” so I have to decide how to manage it – ask my husband (who is “huffy-puffy” with his COPD today), or try to bend over and get it myself. I bend over while sitting in my chair, then can’t get back up. I pretend to be looking for something. Finally, I get my back and hips unlocked, and am able to sit upright again. Hip and back are radiating fiery pain, but I just grit my teeth. Eventually, it subsides to a “dull roar.”

What is it like to have RA? Because my feet are numb (from nerve damage and from Reynaud’s Syndrome), my husband doesn’t want to let me drive – I can’t feel the brake pedal or gas pedal, and could easily have a wreck. My shoulders are chronically painful and restricted in movement – again a driving hazard. He has to take me everywhere I need to go, now. I’ve always driven myself – I’ve driven an old 1963 Land Rover, towed large travel trailers and parked successfully, driven an old truck, a VW beetle, an International SUV (before they were called SUV’s), and various vans and mini-vans. But now, I can’t even drive our Dodge Caravan – with automatic-nearly-everything.

What is it like to have RA? Gradually, and again, not so gradually, my life has come apart at the seams. I’m no longer the competent, employed person I always was – who could be relied upon to run errands on the way home from work, take kids to parties and picnics, who earned a good living, who taught on the university level, who got a PhD at age 53. No, I’m none of those things. Rather, I’m more and more helpless, terrified that my husband will die before I do – because I need so much help to do nearly everything. My husband does most of the cooking. He bakes all our bread. He makes our ice cream. Our meals – prepared by him – in the past several weeks have included: shrimp and mixed rice pilaf, Steak au Poiret, Biftek Haché à la Lyonnaise, tempura, Bagna cauda [look it up – it’s delicious], Boeuf Bourguignon, Beef Stroganoff, fondue (from scratch, not a package), and pork roast with maple-mustard sauce. He made our breakfast sausage from scratch (ground pork, seasonings, and a little maple syrup or honey), he has made eggs benedict for breakfast on weekends, baked incredible brownies, and made some great blueberry muffins. He does all that – because he knows what I like to eat, and knows I can no longer cook regularly. Occasionally he will let me make supper, but breakfast (1 hardboiled egg each, 1 slice toast, and coffee) is usually mine to make.

That’s the way it goes. During the day the pain can be just as bad, but I have other things to divert me from the pain, so I seem to be able to ignore it better, or put myself into a different “place” so I don’t react to the pain.

But there are other times, between flares, when I have almost no pain. Can’t predict when it will occur, either. Rain, shine, snow, sleet – could be bad, could be relatively comfortable.

I think one of the things that bothers me, is that the joints in my hands and feet don’t look bad – not like my mother’s did. Her hands were horribly deformed, as were her feet. Her knees looked like softballs in the middle of her skinny legs. We would bring her to our home for Thanksgiving or Christmas dinner, and she’d only be able to “cope” with the excitement and activity for a short period of time, then I’d have to take her back to the nursing home with a box of goodies that she never got to eat. I learned to prepare that box ahead of time and keep it in the refrigerator. She would eat the things in the box over the next 2 or 3 days.

My joints swell a little, then usually go down, leaving no visible trace of the pain I have. My kids have problems explaining it to their children, but eventually the grandchildren will grow up and, hopefully, understand.

Some mornings I wake up and I’m ready to take on the world like I used to. But it never lasts.

Just DRAT! I HATE this disease! I HATE not knowing what I will and won’t be able to do until the morning or afternoon of the date. I HATE the fatigue, the dragging, down to the bone marrow weariness. Mostly, however I HATE not being the “me” I once was. I HATE being the person I have become.

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Today I’m taking part in a Blog Carnival about Rheumatoid Autoimmune Disease Pain Relief. I am more than fortunate in that regard. Both my rheum doc and my PCP “believe” that RAD hurts – and hurts in many ways that are hard to explain or express. So they are both willing to be “liberal” when it comes to pain relief. I, however, am not. I don’t like taking pain meds. They make me sleepy and groggy. So, often I don’t and then suffer the consequences.

Arthrite rhumatoide Source: http://nihseniorhe...

Image via Wikipedia

Well, the questions posed by RA Warrior for this Blog Carnival are:

  • Do people have sufficient pain relief? Are medications sufficiently prescribed? Do they work?
  • Which doctors prescribe medications for Rheumatoid Autoimmune Disease Pain Relief? Pain management specialists? Rheumatology practices? General practitioners?
  • Which methods for Rheumatoid Autoimmune Disease Pain Relief? Eastern medicine techniques like acupuncture? Spiritual techniques like meditation? Traditional physical methods like heat, ice, or rest?

As people are individual, they respond differently from one another to the same treatments. So any treatment will work well for about 25% of the population and not work at all for another 25%. The middle 50% it will work fairly well, but there might be other treatments that will work better. It’s the usual application of the old “normal-distribution curve” that we see in statistics. So, the answer is, NO. Most people do not have adequate pain relief from RAD. This includes those people whose doctors do try to treat their disease pain. Most of us do not have adequate pain relief – and the word “adequate” differs from person to person, so it’s really hard to say what kinds of treatments work.

A plot of a normal distribution (or bell curve...

Image via Wikipedia

I can only address what works for me. First, I don’t respond well to acupuncture, but meditation does help. I managed my RAD and fibromyalgia with prayer and meditation for years. It eventually got too much for me to deal with that way, so my rheum doc prescribed Lortabs (in high dose and large numbers of pills). That was in 2007. I’m finally down to my last 6 pills from that first prescription of 100 pills! I’ll have to get a new prescription to get it refilled. That should tell you just how fast I use them! My PCP was concerned that I have a high level of “background pain” that wasn’t being addressed, so he recently prescribed Butrans patches. I use one per week. He started with the 5mcg per hour dose, then, the last time he prescribed the 10mcg per hour dose. It doesn’t make me sleepy or groggy, and I was really surprised at that. And I was shocked to realize just how much pain I had been in. Areas of my body suddenly became easier to move, and my wrists moved without pain!  While my feet still hurt, it was more of a tingle than an ache or a sharp pain. At least I know my docs will prescribe sufficient pain meds for me. Yes, pain meds work for me.

Treatment with TENS Unit

TENS Unit

In the future, I’ll probably have to have a nerve block for my back and neck pain, but that hasn’t arrived as yet. But I have to admit, my cat purring in my lap also helps – a lot. As does Himself lightly stroking (not rubbing or massaging) the areas that are painful. I have so many that he can’t stroke them all, but he “hits the high points” as needed. So the “gate-control theory” of pain management works for me. I know there are many people for whom treatments based on this theory don’t work. I find however, that my TENS unit works well for me in certain locations. But you can’t use a TENS unit on your neck, so Himself achieves similar results for me by lightly stroking the skin of my neck.

There are many rheums and internists around who don’t realize that we are in severe pain much of the time, and I really sympathize with those patient who have rheums and internists like that. I recognize that I am most fortunate to have two physicians who recognize my pain, and who are willing to deal with it properly.

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Image taken from http://www.niams.nih.gov/hi/t...

Image via Wikipedia

I was reading somethings on RAWarrior’s blog today. In a reply to a respondent who had experienced a home invasion robbery with violence to her and her children. Their cellphones were stolen. She has RA and was so traumatized she couldn’t drive to the police station to report the robbery for 2 or 3 days. The police were incredulous that she waited so long to report it, and simply did not understand that her RA had flared and kept her from leaving the house.

In response to her reply, I stated, in part, that “I dream of a world in which we don’t have to educate others – in which they know and are able to respond to us appropriately, regardless of circumstances.”

But that throws the issue back in our laps – those of us who have, or whose close relatives have, RA.

RA Warrior has an incredible website full of accurate information. Actually, I think many rheum docs should read her blog. She is providing an important public service, and her blog deserves to be read more widely. She challenges the rest of us to “Do Something” to fight RA – whether it is education to the public, to our docs, raising money through philanthropic activism, or something else.

Me, I’m pushing for RA awareness in every way I can. I talk to people at the grocery store, at Red Hat meetings, on the street, everywhere I go – Emmy is a great icebreaker, and then I can talk about RA to them. It’s slow, but I can go into some details that may not be possible through other venues. I have a trapped audience that is interested. I can judge when their interest starts to wane, and try to get it back.

Rheumatoid Arthritis ain’t fer sissies. The sooner people understand that, the better. We ain’t sissies! The pain is real. The crippling is real, and the disability is real. It’s not in our imagination. It’s a disease we deal with on a daily basis. It affects nearly every system in our bodies – joints, tendons, ligaments, muscles, heart, lungs. We are attacked and laid low by pain, fevers, malaise, stiffness and swelling. We deal with it as best we can – some better than others. We have to take medications that help the disease, but cut down our life expectancy. The trade-off is pretty easy to see – without them life isn’t worth living, and like one of the characters in “Murder She Wrote,” we feel like hanging ourselves.

For me, as an Orthodox Christian, of course, suicide isn’t an option. But when I watched that episode on DVD, recently, I really understood how she could have done it. It made me wonder if the writer had RA or had a relative with it.

THAT is the kind of awareness we need more of – RA is so bad, some people contemplate or even commit suicide.

But even my small contributions toward awareness are better than nothing.

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Went to the doc the other day – the Primary Provider, not my Rheum doc. And I got the usual question:

On a scale of “1-10”, “10” being the worst, whats your pain level today??

I told them it was “5.”

If I had gone the day before, though, it would have “7.” The next day it might have been “3” or “4.” I other words, the pain is continual, and simply goes up or down, but it never goes away. I have not had a day without pain for over 20 years. And at this point, I don’t even know what a pain level of “1” would be like.

As I talk to other RA’ers, I find we all have similar stories. We simply can’t predict what our disease will so on any specific day. So when I go to a doc and my pain level is a 2, 3 or 4, I have to let the doc know what my pain level was the several days before, or even the week before to be sure s/he has the appropriate “take” on how my disease is progressing.

Because of this, it will help you and your docs if you keep a log of your pain, swelling and stiffness. I keep mine on my computer. I have it in Notepad. I put down the day of the week, date, and weather along with a code for Stiffness / Pain / Swelling. I use a 0-10 scale for each, with 0 being none and 10 being the worst possible.  Yesterday looked like this:

Chart of equal barometric pressures in and aro...

Image via Wikipedia

Saturday 3/12/11 Weather partly cloudy Temp Low 34 High 68 – Stiff 5 / Pain 4 / Swell 5

I keep track of how my Rheumatoid Arthritis fluctuates according to the weather, and find there is a relationship – not an exact correlation, but a relationship between the weather and how my stiffness, pain, and swelling are. If my docs know how my disease is fluctuating, they will know whether to recommend new or different treatments for me.

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