A New RA Book – Your Life With Rheumatoid Arthritis by Lene Andersen

Your Life with Rheumatoid Arthritis, by Lene Andersen

In today’s digital age, there is an unending list of resources on health and diseases generally, and rheumatoid arthritis specifically. Upon receiving a diagnosis, it’s difficult to know where to begin. Lene Andersen’s new book, Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects, and Pain, provides a thorough and easy to read treatise which addresses many aspects of living with RA. She attempts to get new patients to face reality while tempering that reality with hope. But this book is not just for the newly diagnosed. Veterans to RA will also gain insight, learn new ideas, and be reinvigorated to press forward in their fight with the RA beast.

When battling a chronic disease like RA, it is easy to become confused and discouraged. Through her book, Lene’s attention to detail and positive outlook is encouraging and full of hope. All topics are well researched and referenced. She provides links and connections to support groups. She deftly deals with touchy subjects like pain control, mood, choosing to take complex medications, side effects, and relationships. The writing style is easy to understand but she provides enough technical information to be helpful.

I could think of no one better to write such a book. Lene has faced a lifetime full of dealing with RA and this experience is infused throughout her writing. She is a well respected leader in the online RA community through her work at the HealthCentral.com RA site, the non-profit organization Show Us Your Hands, and her blog called The Seated View. Upon receiving a diagnosis in early 2009, Lene was one of the first people I met at Health Central and I was drawn to her calm, well reasoned, data driven, referenced, and clear responses within that online community. This book represents an extension of that same approach. I only wish that this book was available at the time of my diagnosis. I look forward to reading the next books in the series!

I asked Lene a series of questions related to the writing of this book. Below are her responses.

1. What initially was the driving force behind the genesis of writing a book about RA?

I meet so many people who’ve had their feet knocked out from under them because of RA and no wonder — it can be a difficult thing to live with. The Your Life with Rheumatologist Arthritis series is a mix of being an RA veteran and my background as a social worker. I’ve had RA (well, juvenile arthritis) since I was four years old, giving me over 40 years of experience in living with the disease and everything that comes with it. I wanted to use that experience to help empower others to take control of their life and make the most out of it. To help people be able to live well with RA.

2. In what areas do you see the biggest need for quality information for patients with RA?

There are so many… I’d love to see more work being done on the systemic impact of RA. If someone gave me a magic wand, though, I’d wave it and create magical funding for much more research on diet and alternative medicine done with scientific rigor. So many people experiment with diet and alternative treatments and we have very little reliable information on the role these can play in managing RA. I believe that both diet and alternative medicine can help at the very least manage symptoms and have used an integrated approach to my care since I was a child. We need reliable scientific evidence to indicate what works and what doesn’t.

3. How has the ever expanding digital world impacted the distribution of information regarding RA including your book?

The Internet and the digital world have had a huge impact on helping people with RA to become educated and empowered. The ready availability of information just a click away is shifting the locus of control from doctors to the person with the disease. This is a very good thing. Technology has also allowed me to publish my book independently, rather than have to persuade a traditional publisher that a book about living well with RA is a good idea. Being an indie author meant that very quickly after the book was finished, we made it available to anyone with an e-reader, smart phone, tablet or computer at a reasonable price.

4. What was the biggest AHA or inspiring moment during the process of writing?

Very early in the writing process, I put together that first paragraph in the foreword where I’m having an imaginary conversation with my RA. In that story, I turned the tables on RA, making it uncomfortable and twitchy while I firmly put it in its place, saying “you may share my life — I will accept that — but you may not control it!” It frames everything that Your Life with Rheumatoid Arthritis stands for.

5. What was the highest hurdle to clear during the process of writing?

The rewrite. I had somehow believed that once I had finished the book, revising it would be a snap. It wasn’t. Somewhere deep in the process, someone told me the general rule seems to be that it’ll take as long to rewrite a book as it took to write it. It made me feel better about how long it was taking. It also made me want to bang my head against a wall.

6. How did you prepare a large manuscript while dealing with physical disabilities that impact your ability to type?

One baby step at a time. Even though I use Dragon NaturallySpeaking (voice recognition software) to write, I still face a limit of how much I can do in a day. That time is shared between my work as Community Leader at HealthCentral.com’s RA site, my personal blog, working with Show Us Your Hands! and managing a chronic illness. It meant I usually dedicated weekends to the book and weekdays for the rest of my commitments. Looking at the book as a whole was too overwhelming, so I parsed it into smaller goals of writing one chapter at a time. Once I was done with one chapter, I moved onto the next without looking at how much I still had to do. There were times where I got derailed into sheer envy when I heard of able-bodied writers hammering out 3000 words a day, but I tried not to focus on that. Instead, I put my head down and took it one (metaphorical) step at a time.

7. What will be the topics for your next books?

For the foreseeable future, I’ll be focusing on writing the next two books in the Your Life with Rheumatoid Arthritis series. Book Two is about adjusting to the many physical changes brought about by an RA diagnosis and Book Three will be about the rest of your life, including working, traveling, family, sex, parenting, etc.

Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain is available from Amazon for the Kindle. If you do not have a Kindle you can download a free app for computer, tablet and smartphone here. It is also available for other ebook readers, including Kobo and Nook. A paperback version will be forthcoming in the Spring.

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Up and Down – Doubling Down

I started Actemra infusions in early December 2012. After trying four biological treatments over the past four years – Enbrel, Cimzia, Humira, and Orencia – I tried not to get too cynical about the potential outcome. At the same time Actemra infusions began, my rheumatologist put me on a different DMARD – azathioprine or Imuran. We started at the lowest possible dose of each – 4mg per kg of body weight of Actemra for monthly infusions and 50mg a day for azathioprine. A dramatic impact began about 3 weeks after the first infusion. The change was almost overnight. Within a 24-48 hour period, my energy levels skyrocketed and joint pain diminished. My wife immediately noticed the change for the better. Sleep was more refreshing, the ability to do work increased, stiffness was almost non-existent, and I wasn’t a slug by dinner time. A real treat was the three times I got on our elliptical to exercise for 20 minutes – it had been almost four years since I last exercised!

But as quickly as the amazing results came on, they began to fade away. By the time of the 3rd infusion, I was almost back to the place where I started. Energy levels and lack of joint pain were tracked on a scale of 1-10 and the graph pictorially depicts the results. At the same time this was occurring, we noticed a dramatic increase in cholesterol levels and blood pressure which coincided with the start of Actemra. According to the Actemra prescribing information, increased cholesterol and hypertension are common side effects.

My rheumatologist is a very knowledgeable and compassionate doctor. Her goal is remission and she will try whatever it takes to get there. While driving to an appointment this morning, I began to wonder if I had seen the last of Actemra. The choices are getting slim – really only Rituxin and the newly approved Xeljanz. But she said that I was on the lowest dose of both Actemra and azathioprine. So, we’re doubling down on both in an effort to recapture those golden moments experienced in January. We’ll try 100mg of azathioprine daily and 8mg per kg of body weight of Actemra infusions monthly. Of course we’ll continue monitoring cholesterol and blood pressure. I’ll keep plotting the results and see the outcome of this latest experiment.

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“You’re Walking Like Frankenstein”

The other day I walked into the kitchen and my wife laughingly said to me, “You’re walking like Frankenstein”. I laughed back because I knew that I was like the “living dead” for many reasons but mostly because of changes in my joints. I have bursitis in both hips which radiates pain down the thigh and in the buttocks (I got two cortisone shots recently and they did nothing – but that’s another story), cartilage damage in both knees, and three surgeries on my ankles. Add to that, I could barely get out of bed and walk around this morning due to sharp pain in the same area of the right ankle that’s had two surgeries. I’ve felt that pain before which was from erosion in the heel bone causing spurs to dig into the Achilles tendon. Yep, I was walking stiffly and probably looked like a monster from a movie.

It’s a natural tendency to make adjustments due to pain or joints that aren’t working as designed. Joint changes from rheumatoid arthritis seem to be inevitable As bone and soft tissues are attacked, damaged, and eroded, the joints can no longer work as they should. Fortunately, disease modifying medications can slow down the damaging biochemical processes. In spite of being on medications, changes are still affecting my movement and activity.

When the term arthritis is mentioned, the first thing that comes to most people’s mind is probably bone damage. With the more common osteoarthritis (OA), there may be damaged cartilage causing bone to rub together. But with rheumatoid arthritis (RA), the immune system attacks the body’s own tissue. The capsule surrounding the joint, called the synovium, becomes enlarged due to an increase of immune cells. Eventually an overproduction of bone eroding cells and enzymes begins to erode bone tissue and soft tissues.[i] The soft tissues that hold the joint together including tendons, ligaments, and cartilage are also damaged.[ii] [iii] When all of these tissues become affected, the entire skeletal structure designed for movement cannot work properly. Add to that stiffness caused by RA, and the result is walking like Frankenstein!

My joints used for walking are changing and the effects are becoming noticeable not just to me, but to those around me. Add to that the fact that any hope for strenuous physical activity is pretty much gone for now. My daughter wants to go snow skiing but the best I could do is drive her there and sit in the lodge drinking cocoa. The hope is that treatments can keep the process at bay long enough so I can avoid more surgeries and using assistive devices just to carry out that common, everyday task we take for granted – walking.

Photo Credit: By Stefan Eggert (User:Berreu) (Own work) [GFDL (http://www.gnu.org/copyleft/fdl.html) or CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0/)], via Wikimedia Commons

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[i] http://www.hopkinsarthritis.org/arthritis-info/rheumatoid-arthritis/ra-pathophysiology-2/

[ii] http://www.ajronline.org/content/189/6/1502.full

[iii] http://rheumatology.oxfordjournals.org/content/48/8/887.full

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It Ain’t Hip to Have RA

It hurts to sit. It hurts to walk. It hurts to lie down. It hurts when awake. It hurts when asleep (or trying to sleep). It hurts even when not moving. The pain radiates down the leg and into the buttocks. Such is my recent experience with the left hip. An inflamed bump on the trochanteric bursa which lies on the outside of the top of the femur bone is quite noticeable by simple observation. I observed the swelling today while comparing it to the right side. My rheumatologist drew attention to it during my last visit in August. She gently pushed on the outer most part of the hip where the bursa lies and a sharp pain immediately became apparent. She mentioned that such inflammation of this bursa is common with RA. According to an article published in the Annals of Rheumatic Diseases,

“Trochanteric bursitis is an underdiagnosed, easily remediable cause of pain in RA. Specific examination for in presence should be a routine in all patients with RA, especially those with hip pain.”[i]

I do wonder about the “easily remediable” part of the quote as nothing related to RA ever seems to be easy or permanent. Over the past few months, the pain has gotten increasingly worse to the point where it’s impacting daily routines. My rheumatologist mentioned that the first line of treatment will likely be a cortisone injection. This will be the first topic of discussion at next week’s appointment. I’ve never had a cortisone injection so this will be a new experience.

Off for my monthly Orencia infusion tomorrow morning…

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[i] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1000992/

Photo Credit Creative Commons public domain image: http://commons.wikimedia.org/wiki/File:Kugelgelenk.jpg

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A Twinge of Pain from RA

 Definition of TWINGE

transitive verb

1 dialect : pluck, tweak

2: to affect with a sharp pain or pang[i]

A typical day with RA includes gentle reminders such as stiff and tender fingers while typing, difficulty getting up out of a chair if sitting more than 30 minutes, a knee that pops loudly while flexing, elbows that ache, and then there’s the ubiquitous fight with fatigue. After three ankle surgeries on torn Achilles tendons, tendon insertion tears, and bone erosion in the heel, these areas are omnipresent reminders of RA. Most days it’s tolerable and doesn’t impact walking – although strenuous exercise is out of the question. But every once in a while when going up or down stairs a sharp pain comes out of nowhere to scream a very loud reminder. This twinge catches me by surprise. Many times the pain is so bad that I must stop on the stairs and change the way I walk. Many have seen me limp away from the stairs. The sharp pain usually lasts for a few hours before subsiding. Once the major pain is gone, I usually forget it and move on. But the little voice in my head always asks if there is more RA-induced damage that will result in another surgical procedure someday. Ignoring that voice is helpful as there’s nothing to do about it now.

Recovery from sinus surgery seems to be going well. It’s been 10 days and the bleeding is almost gone, breathing is better, headaches are less intense, and energy levels are slowly returning yet with peaks and valleys. The best news is that today was the last dose of the antibiotic Cephalexin. This is the last of four antibiotics taken over the past 3 months. These strong antibiotics impact the GI system in very uncomfortable ways which won’t be missed. Arava will be added back to the RA treatment regimen tomorrow. Of course, Arava brings its own set of GI side effects which aren’t too bad at the 10mg per day level. The next Orencia infusion is Tuesday and I’m glad that I didn’t have to miss a dose during this entire sinus situation. Hopefully sinus infections will be a thing of the past.

Early next week I plan to write a post about the role of cell death in rheumatoid arthritis, genetic links, possible treatments, and how this is connected to cancer. Have a good weekend!

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[i] http://www.merriam-webster.com/dictionary/twinge

Creative Commons Photo Credit: http://www.flickr.com/photos/atoach/1919798630/

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RA Pain – Types, Causes, and Treatments

I’m at a loss about how to describe the various types of pain I’ve experienced with RA. As I prepare this post, all of my PIP finger joints (middle joint) are swollen and tender to the touch. The DIP joint (tip) on my left pinky smarts. The MCP joint (base of finger) on my left middle finger lets me know when I grab the steering wheel. Both wrists hurt when I flex them. My right elbow displays a sharp pain right above the joint. Both knees ache and crunch when moved. My calf muscles feel stretchy and stiff. Both Achilles tendons sting…the right one is bad enough that it was difficult to drive home from work today. The sides of my feet hurt when I press on them. While this day may not typical, one thing is certain…some sort of pain is always present with RA.

Sometimes I find it hard to pinpoint the source or cause of the pain. Yet my analytical mind wants to understand the underlying reasons. Perhaps knowledge can lead to pursuit of the right treatment. But it’s probably more curiosity than anything since my stomach can’t handle oral NSAIDs, I try to avoid taking inflammation-reducing prednisone as much as possible, and I tend to shun narcotic pain relievers for their side effects.

Pain is the body’s way to telling you something is wrong. According to one source,

“[Pain is] an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage. While it is unquestionably a sensation in part or parts of the body, it is always unpleasant and, therefore, an emotional experience.”[i]

Pain can be classified as either acute – short term, or chronic – long term.[ii] While some RA induced pain may be acute, it can come and go depending on what joint is being affected, much of it is chronic. Pain sources can be nociceptive – caused from the stimulation of local nerve receptors, or non-nociceptive – caused by problems with the central nervous system.[iii] RA pain is nociceptive since it tends to be localized to various inflamed or damaged tissues. Nociceptive pain can be further divided into somatic – localized to an area resulting from damage to the musculoskeletal system, and visceral – non localized pain.[iv] With somatic pain,

“Patients may describe this as sharp, aching, and/or throbbing pain that is easily localized.” [v]

Pain associated with RA is typically chronic, nociceptive, and somatic. Management for this type of pain is facilitated through the use of analgesics like acetaminophen (Tylenol), non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen, or narcotics.[vi]

Another type of pain caused when the nervous system is damaged, called neuropathic pain, may also be associated with RA. [vii] For example, the tingling sensation associated with carpal tunnel syndrome I’ve experienced lately is caused by pressure on, or damage to the median nerve that enters the hand.

With RA, the first and foremost goal is to treat the cause of the pain – inflammation. In this regard, my thought is, “Humira, do your thing so inflammation and pain is reduced.” If not, I’ll be forced to take more drastic actions such as treating the pain symptoms directly. That’s where my treatment options become less available. I guess I’m left with Tylenol, the hottub, topical Voltaren gel (an NSAID), and rest! If that doesn’t work, perhaps I’ll pull out the prednisone tomorrow. I’d prefer to treat the cause directly and not the pain symptoms. In the meantime, I’ll try “taking” some of those peanut M&Ms my daughter brought home for me from back-to-school shopping!

Photo credit: Creative Commons License http://www.flickr.com/photos/azariusrex/

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[i] American Pain Society. Principles of Analgesic Use in the Treatment of Acute Pain and Cancer Pain. 5th ed. Glenview, IL: American Pain Society; 2003.

[ii] http://www.texmed.org/Template.aspx?id=1462

[iii] http://www.ehow.com/about_5393798_somatic-pain-vs-visceral-pain.html

[iv] http://www.painbalance.org/nociceptive-pain-overview-1956304245

[v] http://endoflife.northwestern.edu/pain_management/part_one.cfm

[vi] http://www.medterms.com/script/main/art.asp?articlekey=10933

[vii] http://www.painbalance.org/neuropathic-pain-overview-2772791

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RA and Type A Personality – Not a Good Mix

Our house was built in 1980. The structure has strong bones and suits our needs just fine. But in 2004 when we bought it, it was clear that the doors and woodwork were tired and needed updating. Besides that, I really hate those hollow doors made of cheap plywood. In 2006 we bought interior solid 4-panel pre-hung doors for the entire house including all rooms and closets. Those got finished and installed within a few months (see photo). The baseboard and casing trim woodwork was the next project. After careful measuring and re-measuring, I ordered over 3,000 linear feet of fir trim which was quickly delivered to my garage. It was about this time that the symptoms of RA began creep in. Before being officially diagnosed, I had surgery on both Achilles tendons. The surgeries, coupled with increasing fatigue put all woodworking work on hold.

The pile of wood in my garage ate at my psyche…I wanted it done and installed. But RA had caused a change in those plans. Finally this spring, one of my sons and I began to tackle to job. Stations were set up and I taught him how to finish the wood which involved numerous steps. Piles of high quality finished wood began to appear (see photos). I was proud of my son for his attention to detail. With a few days off from work planned this week, my other son and I set out to start installing the trim. Yesterday was spent teaching him how to remove the old trim wood. A large pile of old junky wood was created. By evening, I could barely move. My wife warned me to take something for either pain and/or sleep when I went to bed but I promptly ignored her. By 5:00 a.m. I was awake and stiff as a board. With all of the old trim removed, I was determined to start installing the new wood today. My wife gently reminded me to take it slow today or even take the day off. My type A personality got in the way and I again ignored her.

Now I sit here with pain in every arm, hand, fingers, knees, and ankles…stiff as a board and with no energy. Getting out of my chair is downright difficult. Alright, I’m hard headed and refuse to learn. I still think that I’m healthy enough to tackle any project. I never learn my lesson. Sure, I’ll take a day or two away from the project. But I’ll likely “forget” and be right back in the same place tomorrow…the deck needs its annual staining! So much for the recommendation for RAers to “pace yourself”.

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Cimzia Update

A second dose of Cimzia (certolizumab pegol) was injected Wednesday evening. Since Enbrel was no longer working well, my rheumatologist recommended trying a new medication. Cimzia, which was recently approved by the FDA, is designed to stay in the body longer thereby making it more effective. The nurse stated that about 15-20 patients in their office switched to Cimzia after Enbrel and Humira stopped working for them.

Below is a photo showing all the paraphernalia associated with self-administration of the antibody treatment. I do “enjoy” the ergonomically designed syringes!

I noticed less fatigue last month after the first injection although joint pain and inflammation continued. The first clear evidence of finger joint bending was noticable. My knee was bothering me after swimming a little (so much for swimming as a good exercise for RA). The fatigue returned over the past few days. Since swine flu made a visit to our house last week (my son had it), I debated whether I should wait to take the second dose. Cimzia lowers the immune system increasing vulnerability to infections. We were still in the incubation period for the flu. But I realized that the toll of RA on my body trumped anything else and I gave myself the second injection. The day after the 2nd injection brought an obvious increase in energy, less “brain fog”, and less joint stiffness and pain.

My rheumy said to give it a good 3-4 months before making any long-term judgements about the efficacy of Cimzia.  Since the pain was still present and finger bending noticeable, my rheumy suggested that I try Mobic (meloxicam) which is a non-steroidal anti-inflammatory (NSAID). I can’t tolerate ibuprofen so we’ll see how this goes. Thus, another weapon is added to the chemical arsenal designed to fight RA in my body.

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Inflammation – the Good, the Bad, and the Ugly

On a long plane trip from Orlando back home to Seattle, an article in the November 2009 issue of Scientific American grabbed my attention. In the article, called “New Culprits in Chronic Pain”, the author discusses chronic pain that is not alleviated by traditional medications like morphine.[i] The offender appears to be overactive nerve cells called glia that help regulate nerve messenger chemicals. As I flipped to a diagram showing the processes involved, I was surprised to see that familiar enemy of RA patients called tumor necrosis factor (TNFα) listed as an inflammatory cytokine being released by the glia. The first thing that came to mind was that TNF blockers like Enbrel may help. A turn of the page revealed a table listing potential medicines being tested to help fight chronic pain…Etanercept (Enbrel) was listed as being in human trials. Excess inflammation seems to be connected to numerous diseases and medical problems.

Inflammation is normally a good thing. It’s part of an immune response when an infection or invader gets inside the body.[ii] My son recently had the flu (probably swine flu since it’s running rampant around here right now). His body was fighting the virus through inflammation which included fever, chills, fatigue, headaches, loss of appetite, and muscle pain. [iii] My son’s reaction to the flu is an example of acute or short term inflammation. He’s better now and fortunately no one else in the family shows signs of the flu but we’re still in the incubation period for a few more days. (By the way…anyone out there get an H1N1 vaccine yet?)

Chronic or long term inflammation is bad and is linked to all sorts of ugly diseases including RA, inflammatory bowel disease, psoriasis, lupus, scleroderma, polymyositis, vasculitis, rosacea, celiac disease, multiple sclerosis, asthma, and even arthrosclerosis leading to heart attacks and strokes.[iv] [v] [vi] And now chronic pain is associated with inflammation.

http://commons.wikimedia.org/wiki/File:Psoriatic_arthritis_ankle_ar1934-3.gif

As mentioned in an earlier post, inflammation results in messenger proteins called cytokines being released by cells. [vii] In autoimmune diseases like RA, the system is out of whack and too many of these cytokines are released resulting in ongoing inflammation. Most widely used medical treatments for RA are targeted at reducing the inflammatory impact of cytokines.

One of the least publically understood aspects of inflammation is chronic fatigue. This is way beyond just being tired – I refer to this feeling as being run over by a truck. Other than permanent joint damage, for me this is the hardest aspect of dealing with RA. Malaise, lack of interest in social interaction, brain fog, and depression are regularly linked to inflammatory diseases. The causes for this escaped scientists. But now researchers are beginning to unravel possible connections between inflammation and the brain.[viii] Interestingly, this recently discovered connection brings us back to the research about chronic pain – the glia nerve cells are implicated. Perhaps these connections will lead to new treatments that will keep RA sufferers from being “run over by the truck” as a result of chronic inflammation!

In the meantime, the multifaceted fight against inflammation continues (my next blog topic).

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[i] http://www.scientificamerican.com/

 

[ii] http://users.rcn.com/jkimball.ma.ultranet/BiologyPages/I/Inflammation.html

[iii] http://my.clevelandclinic.org/symptoms/Inflammation/hic_Inflammation_What_You_Need_To_Know.aspx

[iv] http://www.crccid.com.au/www/119/1001127/displayarticle/1001196.html

[v] http://www.cibliga.com/en/index.html

[vi] http://www.rosaceatoday.com/RoleofInflammation.asp

[vii] http://nic.sav.sk/logos/books/scientific/node32.html

[viii] http://www.sciencedaily.com/releases/2009/02/090217173034.htm

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Droplets and Deluges of Life Changes

Two workers were busy installing new gutters and gutter covers on my house today. Autumn and Winter in the Pacific Northwest means that more air comes off the ocean bringing with it moisture. Much of that moisture falls to the ground on the Westside of the Cascade Mountains (rain shadow effect). Our home is actually somewhat protected from the Olympic Mountains across Puget Sound, but about 40-45 inches of precipitation falls annually. Only 10 miles east of us, the rainfall increases to 90 or more inches a year as the Olympic Mountain rain shadow is not as much in effect and the air moves up in altitude. The rain usually comes slowly but it is critical that houses have good gutter systems to collect and divert the water away in order to avoid damage. Thus, good gutters are vital.

http://www.flickr.com/photos/elvispayne/

Once Autumn arrives, the sounds of leaf blowers can be heard almost every day. More often than not, those blowers are on a roof being used to clean gutters in order to maintain flow. That was my weekly routine for the past five years. But that practice was interrupted by a visit from rheumatoid arthritis. Don’t get me wrong, I’m thrilled to not have to clean gutters anymore. But hiring a professional gutter installer brings home the point that RA has changed my life. Here’s a partial list of some activities that have changed over the past year since RA decided to kick it up a notch.

• Lawn mowing and gardening
• Snow skiing
• Long walks with the dog
• Visiting the recreation center
• Missing evening events because of fatigue
• Stopping short that awesome Hawaiian snorkel tour
• Learning how to navigate medical systems
• Cutting back on service activities

Sometimes RA brings changes in small increments…droplets. Sometimes the change is more rapid…deluges. RA patients must have good gutter systems to capture the changes and channel it away. Such systems include family, friends, others who are experiencing RA, good doctors, and most importantly, faith and hope in God. My gutter today came in the form of a handwritten card from a family who thanked me for all I had done at church over the past few years. They knew I was in pain and was cutting back on my activities. And the father of this family offered to clean out my gutters a few weeks back. That note, coupled with the offer to crawl on my roof, helped me stay “warm and dry” today.

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