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10 Tips to Feel In Control With RA

In honor of Rheumatoid Awareness Day on Feb. 2, we asked our friend and RA blogger Annette McKinnon to share how she took control of her life despite RA.

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It’s easier to cope with chronic illness if you feel that you have some control over your life and your health.  When everything seems to be spinning away from you, life is harder to manage.

I read a scientific paper called Dispositional optimism and coping with Pain that discusses how your conviction about having control helps you to to deal with stressful experiences. It says:

“When analyzing the course of psychological processes of coping with pain, attention should be drawn to the factors which may support an individual in their efforts to reduce sensations or get control over stressful experiences. One of such factors is an individual’s conviction about having control over what happens in life or about the ability to influence and change the course of events.”

With chronic illness you are forced to be your own health manager so it is up to you to gather information to help you make better decisions. You need to learn skills for this complex task as you go along, because the days of good health and no worries are behind you. Yes, there is always the hope of having them return but in the meantime try to find the management style you are most comfortable with.

Here are my first and best ideas to help with this.  More suggestions are welcome –  please leave your ideas in the comments.

1. Gather a support community. The first suggestion I would make is to join an online group or community.  They can be a great source of information and encouragement.  It’s harder to find a physical real-time group than one that is online. It is also easier to spare the time for online efforts. (Check out myRAteam.com, the social network and online support group for people living with RA.)

2. Educate yourself.  Start small and learn the vocabulary of your specific problem. Then start learning more details. It makes a lot of difference if you know what the options are likely to be before you are faced with them. That helps you to stay in the front seat, even when you are not the driver.

3. Know your treatment options before you need them. Start collecting tips about good doctors, clinics, possible treatments and other types of health care professionals who may be able to help you. When you need them, it’s much easier to figure out if you keep track as you go along.

4. Try to build up a small surplus of your most essential medications. Every time you forget to take a medication, put it in your “extra” vial.  You never know what can happen – hurricane, earthquake, pharmacy fire.  You don’t want to be desperate because you are running out of medication. It’s another way to have  control.

5. Write a journal or blog. Get your thoughts out of you head and put them in front of you. Talk back to them. 🙂 There’s a post about that here about what it can do for you.

6. Plan ahead. It’s good to feel that you always have a possible “move” that you can still make.  Whether I’m waiting to see how a new treatment works before going on to the next, or knowing a pain treatment possibility that I don’t always use or need, I feel much more in control if I have a strategy that may help if things get worse.

7. Be open to new ideas. There is little I rule out completely except things with no proof at all. In my case, though I feel that medication in general is working for me, I would consider trying massage, acupuncture, change of diet, specific exercise and so on.  I’ve learned it’s a bad sign when people on social media try too hard to get you to use their remedy.

8. Improve at something.  There are many free brain exercises, like Beat the Chimp.  Tackling sudoku or crossword puzzles every day is another example of control, as is any creative and fulfilling experience you engage in, including crafts and puzzles. Engage your brain.

9. Find a way to be happy. Take a leaf out of Neil Pasricha‘s book and start your own Book of Awesome.  There are many things in life that can lead to small moments of joy. Make a folder on your desktop and find a happy picture every day to put in it, for example.

 10. Spend time with animals. Pets can keep you going when nothing else helps.

 

(Right: Annette’s dog Dolly.)

 

 


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annetteandbrianoutside3Annette McKinnon has lived with rheumatoid arthritis for 30 years. She spent the last 20 working full time in market research and now is involved in health advocacy and chronic illness awareness. This post originally appeared here and is reposted with permission.

 

 

Spreading Awareness & Educating Clueless People About Rheumatoid Arthritis

In honor of Rheumatoid Awareness Day on Feb. 2, we asked our friend and RA blogger Leslie Rott to share how she responds to comments from people who don’t understand.

 

For many of us with rheumatoid arthritis, educating people happens throughout the year, not just during awareness days or months.  This is because much of the general public is completely clueless about what RA actually is and how it is treated.  What follows are some typical things that often well-meaning but otherwise clueless people think about RA and what the truth about them actually is.

 

My grandmother has arthritis.  

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You’re too young to have arthritis.

The truth: Yes, well, RA is not your grandmother’s arthritis.  RA, unlike osteoarthritis, is not age-dependent.  Anyone, at any time, can be diagnosed with RA.  

 

It’s just a little arthritis, what’s the big deal?

The truth: RA isn’t just arthritis.  It’s not just an ache or pain here or there that may only be isolated to one joint.  RA is a systemic illness that impacts not just the joints, but the organs, as well.  This means that severe fatigue and a general feeling of being unwell are also paramount to RA, in addition to joint pain and damage.     

 

But you don’t look sick.

The truth: RA, like many other autoimmune diseases, is often an invisible illness.  While some people do have visible damage and deformity of their joints, others do not.  Just because you can’t see it doesn’t mean it’s not there.  Often those of us with RA mask our pain and tell people we are “fine,” even when we aren’t.  

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My friend cured her own arthritis.  If you just try this diet or workout regimen, you will be cured, too.

The truth: If there was a single diet or exercise plan that worked to cure RA, we would all be doing it.  While some people do find some relief from their symptoms via diet and exercise, many people do not and are reliant on available prescription medications to function.  While remission is possible, there is currently no cure for RA.  

 

Losing weight will cure your arthritis.

The truth: While managing one’s weight can take pressure off the joints, losing weight in and of itself will not get rid of RA.  Losing weight can be difficult for RA patients to do because one of the first line treatments of RA is steroids, which are known to cause significant weight gain.

 

If you’re a woman, just get pregnant, and your RA will be cured.

The truth: While pregnancy can mitigate the effects of RA, not all pregnant women see improvement in their disease while pregnant.  In fact, for some women, their disease gets worse.  Some women have massive flares post-pregnancy.  Additionally, those with RA should discuss pregnancy with their doctors as some medications used to treat RA are not safe during pregnancy.  Some medications even have a washout period where the medication has to be out of your system for a certain amount of time before getting pregnant is even an option.  So while pregnancy can sometimes improve RA symptoms, everyone is different, and it’s important to talk to your doctor about your specific situation.  

 

Move to a hot, dry climate and you will be cured.

The truth: While many people with RA say that their disease activity is impacted by the weather, there is little scientific evidence to suggest that one climate is better than another for living with RA.  I mean, we can’t all live in Southern California where it is 75 degrees and sunny all the time.  

 

Taking Tylenol or Aleve will take away your pain.

The truth: Again, RA isn’t just your everyday garden variety of arthritis.  Most over-the-counter pain medications do little to nothing to help relieve joint pain from RA.  

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Cracking your knuckles gave you arthritis.

The truth: That’s a total myth.  Cracking your knuckles does not cause arthritis.  And for that matter, there is nothing that a person with RA does to get RA.  There is no single cause of RA.     

 

You can’t die from arthritis.

The truth: Sadly, you can die from RA.  Because RA is a systemic illness that impacts the organs, as well as the joints, those with RA are at a higher risk for premature death.  There are many reasons for this, including heart disease, lung issues, and suppressed immune system which can cause infections like pneumonia or the flu to be fatal for someone with RA.  While medications used to treat RA can suppress the immune system further, for most people, the benefits of medications outweigh the risks, as untreated RA can lead to irreversible joint damage.     

 

Please share and spread awareness about rheumatoid arthritis!

 

 


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Leslie Rott was diagnosed with rheumatoid arthritis and lupus in 2008 at the age of 22. She fights hard and since her diagnosis, she has completed two Master’s degrees and a PhD! She blogs about her journey on her blog, Getting Closer To Myself.  You can find Leslie on myRAteam here.


 

 

 

 

On Living with Acute Chronic Pain: Please Don’t Treat Me Like a Drug Addict!

 A Note on Living with Acute Chronic Pain - Kate the (Almost) Great

This is a look into the chronic pain and sadness of RA told by blogger and author Kate Mitchell.


It’s 9:41 on a Wednesday and I have been trying to sleep for almost 2 hours. My body has been sluggish and weak all day – well, more than normal, at least – and I need lots of sleep. Preferably 10-13 hours. But once I try to actually go to sleep, I can’t.

I’m not dealing with sleep issues, I’m dealing with pain. I only have one more narcotic pain pill left because the prescription I tried to fill earlier in the week had expired. And that’s because we had a mix up at the doctor’s office and they gave me an old script that I never filled. So tomorrow I’ll trek back across the city to get my script, go back to my local CVS, and hope that the new pharmacy interns don’t treat me like a drug addict.

woman-medicine-pill2That’s nothing against that, really. My local pharmacy has 2 full-time pharmacists (they have their pharm. docs), some full-time techs, and the rest are pharmacy students interning. The interns recently changed over for the summer semester and they don’t know me yet. The rest know me. They know that I take 25 pills a day and fill a legal (and needed ) opioid prescription every month.

The interns are trying to combine what they’ve learned in their classes, what the law tells them, what they’ve heard about people filling narcotics, and their brand new practical experience. They don’t know yet that I’m not a drug addict – I’m a patient with a highly active and severe case of seronegative rheumatoid arthritis who is waiting for the trimester’s chemotherapy to kick in.

I have arthritis in 58 joints and it’s currently running wild while I wait for last week’s chemo to kick in. It won’t for another 2-3 weeks, so in the meantime, I’m just trying to get by every day as much as I can. I still haven’t completely recovered from my chemo yet – my appetite hasn’t returned and I’ve been overly exhausted for 6 days. Today was my first day back for work. The absolute last thing I want while dealing with all of this is to be treated like a drug addict looking for their next high.


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Fenway ParkThis post originally appeared here and is reposted with permission.

Kate Mitchell is 23 year-old and lives with rheumatoid arthritis. She taught 9th grade English for a year and is working on her second book. She is an author, arthritis patient advocate, and Boston Red Sox fan. Follow her on Twitter: @kmitchellauthor.

Admitting The Inevitable: When Medications No Longer Work

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Guest post by Leslie Rott.

During the #ChronicLife experiment, in which I live tweeted for 48 hours, I announced that my current medication regimen, the one I’ve been on the longest ever, is no longer working.

I got a ton and love and support about it, but supporters seemed more upset about it that I am. I think I’ve been in denial about it for so long that when I finally admitted it to myself, I had already made peace with it.

For me, if I can go a year without either plateauing, or getting liver or kidney toxicity from a medication, that’s a success in my book.

Despite some dosing changes, I have been on my current regimen – albeit with dose changes – for around two years now. So it was inevitable that one day, it would stop working or I would have to go off of it.

And I know I am far from alone in this game of cycling through medications.

How do I know that the medication is no longer working? First of all, my fatigue is awful. Most days I come home from work/school, eat dinner, and end up falling asleep by 9 o’clock. My boyfriend will wake me up at 11:30 or so, tell me to brush my teeth and take my meds, and then I go back to bed.

Second, I’ve been having significant stiffness to a degree that I haven’t experienced in a long time, if ever. I can walk down stairs okay, but I can barely walk up ten stairs without my body stiffening to the point of not being able to move.

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Again, this was inevitable. It was bound to happen sometime. It wasn’t an if, but a when. So I finally saw my rheum. I laid everything out for her. The fatigue, the stiffness. The fact that my right hip and foot are in almost constant pain. In fact, the nodule on my right foot has gotten so bad that she could clearly see it through my sock.

I admitted to her that I am somewhat frustrated with my quality of life at the moment. If I do anything during the week, I come home completely exhausted and I end up going go to bed super early. On the weekends, I can stay up later, but all I do is homework, often not getting out of my pajamas.

And my rheum agreed. She said that my degree of fatigue really concerns her, and given that and my stiffness, believes I am flaring. Why does that always surprise me? Why don’t I realize on my own that I’m flaring? I guess when I think of a flare, I think of widespread pain and not being able to get out of bed. But it makes sense.

So I am going off of Tacrolimus and starting on Imuran. I’m not starting it until the weekend, just to be safe. My rheum said that if I have GI issues I won’t be able to stay on it. She also suggested a cortisone shot for the bursitis in my hip. I’ve had issues with my right hip since I got sick, but it has progressively gotten worse, and I’ve never done anything to treat it directly.

I was really hesitant to do the injection. It was one of those things I convinced myself I wouldn’t do. I’ve heard really mixed things, with some people saying it’s nothing, and other people saying that it’s the most painful thing they’ve ever experienced.

breathe-paintingI was pleasantly surprised. It wasn’t too bad. My rheum was really good about telling me what she was doing every step of the way. I felt the needle go in, and I felt the cortisone go in, but it wasn’t particularly painful. Now my hip feels a bit achy and weird, but nothing I can’t handle.

That’s really what made me go through with it. It couldn’t hurt more than the pain my hip is already in. And it really didn’t.

It frustrates me that the threshold of what I will do in the name of my health is always changing. I said I would never self-inject, and eventually, I did. I said I would never get a cortisone shot, and now I have. I think in wanting to gain some measure of control over these illnesses, I create boundaries, but those boundaries become cloudier the longer I live with these illnesses.

I told my rheum that I really hope the day comes when I can walk into her office and tell her that I feel awesome and don’t know why I’m there, instead of coming in with a laundry list of problems. She said she would like that, too.

And we had a few laughs along the way, which I think is a good sign. If you can laugh with the person who pokes and prods you, who touches your painful parts just to make sure they’re painful, then you’re doing pretty good.


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Leslie Rott has been living with RA since 2008. She writes about chronic pain, RA, and lupus. Her blog has been a Healthline top blog for two years. Follow her on Twitter: @leslierott. See Leslie’s profile on MyRAteam.
This post originally appeared here and is reposted with permission.

Getting Started on myRAteam

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Part 1

Get the most out of myRAteam, by sharing a little bit about yourself. This two-part series is to help you get to know great people on myRAteam. When making valuable connections and friendships, it’s always valuable to start with oneself.

Begin With You

Getting started:

Consider the value of customizing your own profile on myRAteam. Whenever we hear something kind or insightful from someone, we have a natural tendency to want to know the person who said it. At a glance, a photo of yourself adds more personality, and builds trust in the community since your profile photo can be a large part of your identity on the site.
read more…