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Rheumatoid Arthritis Guy had a fabulous post back in June. Thought I’d give it a pingback!
http://www.rheumatoidarthritisguy.com/2011/06/you-know-you-have-rheumatoid-arthritis-when/

My additions:
. . . you define your entire week based on which day you take your methotrexate (MTX);
. . . you go into mourning when your “favorite” pen runs out of ink and you can’t get a refill until next week;
. . . you have an incredible collection of DVDs, recorded off cable TV, and you can’t get up the energy to look through them and decide what to watch;
. . . you are working from home and your clients always preface assignments with – “Are you up to reviewing this many records by {date 2 weeks in the future}” and you reply – “It will depend on what happens between now and then – weather, sudden flare, sudden malaise, brain fog, etc.” and they say – “Shall I mail the information, then?” What do they NOT know about RA (and fibro) despite my attempts at education . . .
. . . Your extremely long-suffering husband finally has “had it” with the frustration of your sudden drops in energy level and snaps at you, resulting in your having mild hysterics. {But making up is so marvelous!}

Related articles

• Combination Therapy for Rheumatoid Arthritis (webmd.com)
• A Day Late: How Rheumatoid Arthritis Affects My Life – In Honor of World Arthritis Day (livinglifewithraandfms.wordpress.com)

Total Knee Replacement

Well, it’s been 8 wks, 4 days since my right total knee replacement (TKR). Do I still have pain p Oh YES! But it’s less frequently, less consistent, and less intense – MOST of the time!

According to numerous PTs and Docs, TKRs are more painful and harder to recover from than total hip replacements (THRs). So I’m not doing badly. Flexion is 121 degrees and extension is 0 degree. Need to work more on extension.

Still taking hydrocodone semi-regularly – every 2-3 days, usually pill cut in 1/2. Today my knee  is a lot more painful than last several days, so took full dose – don’t even notice any sleepiness, so pain was significant. And yet, it is lessening more rapidly than usual.

Let me give y’all some tips and suggestions:

1. Take pain meds whenever you even THINK you might need them.
2. Take pain meds 30-45 min before doing your exercises
3. Put a generously sized ice pack on your knee for 10 minutes immediately after completing exercises or any intense activity of the affected joint (recipe below)
4. keep your leg elevated when sitting or lying down – that means affected joint ABOVE level of heart.
5. Did I mention taking pain meds?
6. Push yourself. Do your assigned exercises exactly as prescribed – even if it hurts (that’s why you take your pain meds before doing them).
1. Read #6 again.
2. Read #6 again.
3. Walk around some every day. Take your grandchildren for a walk. (You can walk slowly – they like to look at ants and caterpillars, and leaves and stuff, so you have an excuse to walk slowly.) If you don’t have grandchildren, borrow someone else’s.
4. Take your dog for a walk. If you don’t have a dog, borrow a friend’s. Or take a cat for a walk – on a leash – much more interesting! <snicker>
5. Ice pack after your walk – each time.
6. Take pain meds if they are due (whether you think you need them or not) after your walk.
7. Re-read #s 9&10 again.
8. Re-read #s 9&10 again.

Recipe for ice pack:

• 1 cup rubbing alcohol
• 3 cups water

Pour both into a 1 qt ziplock freezer bag. Seal, expressing extra air. Put that bag into a 1 gal ziplock freezer bag and seal, expressing extra air. Put the packet into the freezer and leave for 4 hours. When it’s frozen, remove it and flex several times. Wrap in a small towel (hand towel or kitchen towel size). Place on knee and press to shape it as far around the knee as you can. Allow it to sit on knee for 10 min. Replace packet into freezer. Recycle as needed.

I’m still doing the list of things. Will be for a while. Still hurts – but not as badly.

Related articles

• Take care with pain meds (medicalxpress.com)
• What To Consider Before Joint Replacement Surgery (earlsview.com)
• Could Low Expectations By Rheumatoid Arthritis Patients Be Holding Them Back After Knee Replacement Surgery? (medicalnewstoday.com)

Pain Pathways (Aristotle)

You know, we frequently ask on the various blogs about Rheumatoid Arthritis why it is that we RAers don’t speak up about our pain and disability.

My reason is because my husband hurts for me. He’s frustrated because he can’t “fix” all of my problems. He hurts for and with me, and he lives every day knowing that there is NOTHING he can do for me. There’s no point in telling him I hurt. Or that I feel sick, or weak. He knows. I can see the knowledge and the hurt in his eyes. I don’t tell him that I am afraid – he knows that, too. We’ve talked about it, in-depth. No sense going over it again.

He is afraid to make love with me because he is afraid he will hurt me, but we work it out. He does the cooking. He helps me bathe. He takes me to doctors, he takes me to PT, he takes me to the grocery with him. We are going into our old age together – and each fears the other will die first.

I don’t talk about my pain and disability to my children and grandchildren because I want them to have their lives. Lives with as little as possible of the Spectre of Mom’s RA looming over them. Oh, they know I have RA. They know my mother died from it. They know I am getting more and more crippled, and I know they suspect the degree of my pain. They each have special stresses and worries with their families. I remember being at that point with my mother. She didn’t want to worry me with her problems, her disability or her pain. When she died, I was numb, as we usually are when someone near and dear dies from a crippling, debilitating, painful illness. I was relieved she was no longer in pain. And I have missed her every single day since she died – all 12,310 (and counting) of them.

My husband says he knew before we married that I probably would develop RA like my mother did. He married me anyway, and has taken care of me the way he knows I had wanted to take care of my mother but couldn’t (she was in a nursing home). He says it was worth it to him to be married to me – regardless of my health. I’d just like to be what passes for “normal” in our society and in our family. I want to be able host Thanksgiving, again. But I can barely “make it” through Thanksgiving as hosted by one of the children. If none of them are “doing” it, we just have a chicken – cooked by my husband.

I’m looking at the negatives – we who have this disease have to consciously focus on the positives in our lives. When I focus on the negatives, I could make myself look negative to my family – and that is not what I want. My attitude shapes me and in turn shapes those around me. So I smile a lot more than I sometimes feel like. And it seems to make a difference – in me, if not in others.

And that, too, is why I (and probably many others) try to not complain and try to look and act upbeat as much of the time as I can. It makes my family feel better – my family who know and understand me. And who love me more than I can tell, and more than I deserve.

Related articles

• My Heart’s Cry (chronicillnesspaindevotionals.wordpress.com)

I got a referral from my rheum doc, and set up an appointment. The orthopedic surgeon (Doc X) was nice, seemed competent, and had NO discernible personality. I explained my problems, and he had X-Rays taken. He said they didn’t look bad, but I definitely had arthritis. My rationale was this: 1) I have rheumatoid arthritis; 2) RA doesn’t get better, it only gets worse, or, with luck, goes into remission; 3) Medicare benefits may not continue into the next year or year after that; 4) if I’m going to be able to have a joint replacement, I have to do it now. Reluctantly, he agreed. What is it with MDs and rheumatoid arthritis???

Two weeks before I was scheduled for surgery, I got a phone call. My surgeon had to take a sabbatical for personal reasons. Would I be willing to have one of the other partners (Doc Y) do my surgery? Yes, of course, but can I meet him first? We had the appointment. He was a very nice guy. I had done my research into his background, and he is uber-competent. He said my X-Rays weren’t very bad – maybe I should consider not having a TKR at this time. I prevailed. Two weeks later we showed up for my admission at 9AM. By 11:00, I was in the OR. Because of prior problems with anesthesia, the anesthesiologist used a different technique for me. I went out like a light, and only vaguely remember even being taken to the OR!

A while later, I awoke and was taken to my room. There was no pain at that point – just total numbness of the entire area of the joint. At some time later – don’t ask me times – Doc Y came by. Said all had gone well. Then he said, “You know, your knee was a lot worse than the X-Ray indicated. You did the right thing.” At least he admitted it! I’m hoping that next time (if there is a next time) I can convince the ortho docs to order an MRI of my left knee and my hips rather than plain X-Rays.

Hospital course was uncomplicated. But I ended up being re-admitted 4 days later with a seroma (serum collection all along the sides of the incision and under it). Because it was very hot to touch, they assumed there was infection – maybe – so I got to have 3 days of IV antibiotics.

Back home again, I had Home Health and in-home physical therapy for 3 weeks, then started outpatient physical therapy. I’m in my 2nd week of PT. What is it about physical therapists and RA? None of them want me to use Emmy to assist me with my activities of daily living! They are amazed at what she can do, but want me to do more for myself. Dillwads! If I could, I would! They don’t consider that when I try to do more for myself, I end up with 1-3 days in my chair, unable to function as well as I normally do.

Now, 5 weeks out, I’m doing very well. I can bend my knee to 115 degrees (115-120 is the target), and I can flatten my knee to -1 degrees (minus 2-3 degrees is the target). So I’m doing well.

Yesterday, I saw my rheum doc. He’s pleased. But he said wait a while before scheduling another joint replacement. Apparently replacing the worst one may make it unnecessary to replace others! I can only hope!

Related articles

• RA Accommodations at Work (webmd.com)

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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.

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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.

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.

Related articles

• Warm Water – Not Hot – For Rheumatoid Arthritis Relief (everydayhealth.com)
• Don’t Lose Hope! ” Rheumatoid Arthritis Guy (dancemajorwitharthritis.wordpress.com)
• Autoimmune Diseases and Acupuncture (acupuncturekid.wordpress.com)
• spoonie envy, or why my disease is worse than yours (cupsquietlybeingfilled.wordpress.com)

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Today I was supposed to go to my rheum doc, but when I got up I was too stiff and tired and “grogged out” to drive. So I had to reschedule.

This is a major irritation, as I need a medication adjustment. I recently had to cut one drug dose in half because of side effects – which led to a major shift in my disease – the RAD started progressing faster. Most of us with rheumatoid autoimmune disease (formerly known as rheumatoid arthritis) have experienced something like this. The side effects of a drug become toxic, the dose is cut (or the drug is cut out) and the disease flares. Can’t win for losing, sometimes.

This is one of the reasons a push for a cure is needed. At any one time there are between 30 and 50% of patients who are not having good response to their medications, or who struggle with side effects of the drugs. Lets see, do I want my joints to hurt less and have less swelling while my hair falls out and my mouth is full of sores? Do I want the swelling to go down while having back pain; diarrhea; dizziness; hair loss; headache; indigestion; muscle aches; nausea; runny nose; and weakness? How about blisters on the inside of the eyes, nose, or mouth; chest pain; fast or irregular heartbeat; feelings of numbness or tingling; muscle cramps, red, swollen, blistered, or peeling skin; severe or persistent vomiting; symptomatic high blood pressure; liver problems, easy bruising, easy bleeding or unusual tiredness? [What is "unusual" tiredness? You mean MORE tired than I am just with the disease?]

Sound like the treatment is worse than the disease? In some ways, but the complications of untreated RAD are even worse! Rheumatoid nodules can form on affected joints and along bony areas that are stimulated – like along the outer bone of the forearm (the ulna), the ribs where a women’s bra may be too tight, or on the “seat bones” (the inferior ilia). They can also form in the lungs and in the lining of the chest cavity. Cardiac complications include sudden death from heart attack – not necessarily related to coronary artery disease – that’s a pretty serious complication!

So, back to being tired. Fatigue has been the ongoing bane of my existence for the past 25 or 30 years. Fatigue is a major component of fibromyalgia (one of my diagnoses) AND of any autoimmune disease. While I don’t have the fevers some patients do, the fatigue gets much worse just as I flare, and seems to improve as I begin to come out of the flare. But it NEVER goes away.

Related articles

• Painful Rheumatoid Nodules – What Can Be Done About Them? (everydayhealth.com)
• Tired of Feeling Tired (everydayhealth.com)
• Rheumatoid Arthritis Drugs – Pros and Cons (everydayhealth.com)
• Do I Have Asthma or Rheumatoid Arthritis in My Lungs? (everydayhealth.com)
• Rheumatoid Arthritis from A to Z (everydayhealth.com)

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You regular readers of this blog know I have RA. I have made a number of adaptations in my life to help me keep as active as possible. One of those things is Emmy, my Black Lab mobility service dog. Without her, I don’t know what I would do.

Other adaptations include having a tiny table and two task chairs in the kitchen. We can sit in there and eat, or I can sit in there and talk to Himself while he makes dinner (breakfast and lunch are usually mine to make). It is very friendly. But when I’m making breakfast or lunch, the chairs are there for me to sit on while I “do things” at the counter. Saves my hips, knees and back a lot of pain and stress.

But, no matter how hard I work at not over-stressing my knees and hips, eventually the disease gets to them. The time has come. I went to an orthopedic surgeon the other day for an evaluation. He took pics of my knees and hips (some of those positions for the radiographs hurt!) and agreed that my right knee in particular was a candidate for a total knee replacement (TKR in doctor-speak).

I haven’t scheduled it as yet. I’ve been working out a calendar of when my kiddoes will not be available this summer. My husband will need some support, as will I. So it looks like early to mid September is the soonest I can schedule it. By the time all of this is over and my back has been worked on, I’ll be like the bionic woman! “They” say the new implants don’t light up the airport scanners, anymore. I’ll believe THAT when I see it!

I’m also considering all the changes I’ll have to make in the house. I’ll have to use my “lifter seat” in my favorite chair, or I won’t be able to get out of it for the first 3 or 4 weeks home. Either that or rent another chair for that period of time. Also, the first few weeks, I’ll have to get Himself to get me out of our big, high water bed in the mornings and help get me back in at night. Himself said he will build an 8″ riser for me to have beside the bed so I can step up – making it easier for me to get in and out without hurting my knee.

According to the literature the doc’s office gave me, I’ll need a raised toilet seat (that adds some other adjustments, too, but not that I’ll discuss here), a walker (I have one), a cane (I already use one, and I have several), a reacher for picking stuff up from the floor (mostly, that’s what Emmy is for! But I have 3 of those). I’ll need to worry about getting around the house – the cat tends to be a major impediment to my walking around, as does the clutter. Himself is concerned about my clutter getting in the way of mobility with the walker. I don’t anticipate using the walker very long, though. When I get a hip done, then I’ll have to use the walker for an extended period of time.

Therapy will have to come to me until I can ride in my stair-lift more easily. Since it’s the right knee, I won’t be driving anywhere for the first 2 months or so, or until the knee is less tender and bends more reliably. No long trips for the first 2-3 months, so I’ll have to work out rescheduling Emmy’s recertification until November or December.

Have to work out a swimming schedule. Even if the water is chilly and makes my muscles cramp, the activity will do me good. Mornings either 6-8 (T&Th) or 9-11 (MWF). Get exercycle back from the kids, start practicing on the treadmill now.

Whew! Just thinking of all the planning and prep that we need to do for this makes me really tired!

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YES! A month for us RAer’s! Here’s a great place to learn about RA: RAWarrior!

And another place HERE.

I’ve started a MeetUp Group around RA and other Autoimmune Arthritis conditions such as Psoriatic Arthritis. This is my meagre contribution toward publicizing and awareness.

Now to get that Meetup group off the ground!

RAWarrior has some PSA videos she made on her YouTube channel.

So check out all these links! They are great reading, good solid info

If you want to share this post with others (recommended!), use the following link:

http://wp.me/p5MqZ-4B

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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.

I encourage you to visit her YouTube site to see some of her other great Public Service Announcements and videos. You might want to share the Public Service Announcement vids with other blogs and websites you frequent.