Posts Tagged ‘snow skiing’

450px-Walking_ManThe 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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Father’s Day is upon us once again and having four children ages 12-19 makes this day one of celebration. All four are successful in their own ways resulting in much pride and joy. But the past few years dealing with a chronic illness like rheumatoid arthritis brought about adjustments in our family and in my role as a father.

Approximately 70% of rheumatoid arthritis patients are women for reasons unknown. Take a gander around RA discussion boards, online communities, and blogs and this fact will be evident. But there are a fair number of men with RA and many of us are also fathers. This combination of fatherhood and RA brings with it a unique set of challenges.

Prior to being officially diagnosed with RA, I went through several years dealing with two ankle surgeries, joint pain and fatigue. Nobody, including family members, put the pieces together until my primary care doctor referred me to a rheumatologist. When the diagnosis of RA came, education about this auto-immune disease was necessary for everyone. The broad use of the term arthritis is unfortunate for RA sufferers as many, including my children, believe that it is something only old people get. Children in particular harbor simplistic views about the world. This is exaggerated when they have less familiarity with chronic illnesses. It took many months for me to explain and demonstrate that there is a difference between osteoarthritis and rheumatoid arthritis. They experienced me dealing with RA symptoms over time which reinforced in their minds that this was a serious condition and was not going away. Watching me inject expensive, biological medications that are shipped to our home once a month on ice always results in wide eyes and curiosity. It’s less of a battle these days getting my children to help with tasks that I simply cannot do anymore – such as mowing the grass (I’m still working on getting them to run the leaf blower!). This education is an ongoing process as just the other day one my children made a comment about me being an “old man with arthritis.”

Rheumatoid arthritis makes one slow down resulting in considerable changes to levels of involvement in all areas of life. It’s not uncommon to have zero energy by early evening. I feel like a guilty blob at times when I can’t help with evening activities. Taking naps is a way of life now and my children know what’s going on when I disappear upstairs for an hour or so during the day. Sometimes the fatigue takes a toll on my ability to pay attention to things and I have to force myself to focus. In spite of these roadblocks, I love my children and want to do everything possible to be there for them. Pushing through the RA symptoms requires determination.

Engaging with my children in physical activities was always a source of simple pleasure and bonding. From wrestling on the floor, to banging it out in street roller hockey, to coaching little league baseball, to teaching them to snow ski or snowboard, I’ve always been involved. In addition to developmental changes in my children as they grow up, my involvement also changed as a result of the RA. No longer can I get in and “get dirty” as I used to. In the past couple of years, snow ski trips were altered or even eliminated due to RA symptoms. I foresee the days when I become the driver and ski lodge cocoa drinker while my children cut new paths in fresh powder.

I’m the primary breadwinner in our family. My wife and I planned for this many years ago so she could stay at home with our children when they were young. In this context, rheumatoid arthritis brought added pressure and questions like “What would happen if I become disabled?” and “Can I keep up with the pace of work?” I know that my wife thinks about these issues from time to time. Our former neighbor years ago had severe RA before the implementation of disease modifying drugs. No longer being able to work, he took disability and we saw firsthand the impact it had on him and his family. We are thankful that both of us are blessed with a fine education, jobs, and benefits. Thus far I’ve been able to remain actively employed. We’ve learned that to concentrate on questions about the future is counterproductive and that life must be approached one day at a time. We’ve made it thus far and have every reason to believe this will be the case in the future.

Rheumatoid arthritis combined with fatherhood presents a unique set of challenges. It requires adjustments in activities and perspectives about life. I’ve come to accept this as part of the journey. Come what may, I still love my children more than anything else and am so thankful for their love in return.

Photo credit: http://www.flickr.com/photos/62337512@N00/

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Now that Cimzia appears to be working fairly well against my RA symptoms, I’d say I’m 60-70% of “normal”, various corners are being turned. TNF blockers like Cimzia don’t work for everyone or even over the long term for those who initially find relief from them (Enbrel stopped working for me). If I’ve learned anything from RA, it’s that change is inevitable. But for the time, I’m content with progress and I can say that Cimzia has given me a semblance of normalcy.

About a 1 ½ years ago, I started taking the lowest therapeutic dose of Celexa (20mg) (citalopram) for seasonal affect disorder. This is fairly common in Seattle given the 8 months of clouds/rain and the fact that the farther north you go, the less daylight there is in the winter (the converse is true in the summer…sun up at 5:00 a.m. and twilight lingers until 10:30 p.m.). Within four months of starting Celexa, I was diagnosed with RA. It seemed wise to stay on the Celexa during that stressful time. I also learned later that an increase of cytokines in the body from RA contributes to mental changes including brain fog and depression (see earlier post). For me, it seems that Cimzia is keeping RA cytokines in a state of check allowing for a decrease in both physical and mental RA-related symptoms.

The long term plans were always to get off Celexa within a year or so. Now that RA symptoms seem stabilized due to Cimzia, my doctor and I agreed that it was time to drop it. I’ve also made it a priority to drop as many medicines as possible…RAers are notorious for their long lists of medications and I hate being a walking pharmacy.

Unlike many other medicines, selective serotonin reuptake inhibitors (SSRIs) like Celexa, Prozac, Paxil, etc. can’t just be stopped immediately because they are believed to impact neurotransmitter chemicals in the brain. Thus, a slow tapering down is necessary. It took about a month to get off it completely. But the battle wasn’t over until my body made final readjustments. Once it started clearing from my body, the week from hell ensued and included insomnia, brain fog, nausea, migraine headaches that lasted for days, brain zaps, and constant dizziness. I knew this might come as there are studies documenting these discontinuation symptoms.[i] But, like the experts stated[ii], things got better after a week or so and it is great to be free of one more medicine. Another corner turned in the battle against RA.

Another series of many small turns were made this President’s Day. I took the kids snow skiing. This was only the second time I’ve attempted to ski since the RA diagnosis (see earlier post). The skies were blue, the snow fluffy, and a blast was had by all. By mid afternoon, my right knee was making it clear that it had enough turning for the day. An MRI several months ago revealed torn cartilage on the interior side and the outside part of the joint is also now hurting. I suspect that a knee replacement will be in store someday (as does my orthopedic surgeon). But I’m not going to let that slow me down now. And I’m hoping that an artificial knee will be even stronger on the slopes!

Who knows what other turns life will bring? Whatever they are, it will be an adventure.

[i] http://www.ncbi.nlm.nih.gov/pubmed/10827885

[ii] http://www.aafp.org/afp/2006/0801/p449.html

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Ever since I first experienced it as an 11 year old, snow skiing represents the ultimate in outdoor activities. The exhilaration, freedom, natural beauty, and crisp air of the experience are unparalleled by any other activity. Six months ago it was questionable if I would ever snow ski again. Shifting expectations are part of living with rheumatoid arthritis (see earlier post).

On Friday, ski gear was gathered and loaded. Lunches were packed. All during the drive to the slopes, doubts crept in about whether or not I could even make it down the hill. After two ankle surgeries and now damaged knee cartilage, the ole legs aren’t what they used to be. On top of that, joint pain and damage in the fingers, wrists, and elbows set in over the past year. And exercise? Yea right! But monthly Cimzia injections seem to be helping. Energy levels are near normal and joint pain is much diminished.

We hit the slopes by mid morning starting with a warm up run on a beginner slope. I could do it! After warming up, we actually headed over to the intermediate runs. While the intermediate runs were possible, the torque put on the knees caused some discomfort.  This experience represents a huge victory in the battle against rheumatoid arthritis. And the right knee with the torn cartilage doesn’t feel too bad the day after!

Riding the lift

If the skiing adventure wasn’t enough, I couldn’t help myself from hitting the dance floor at a friend’s wedding tonight. It’s now 10:00 p.m. on Saturday evening and it’s clear that bedtime is near after two full days. Who knows if skiing or dancing will be possible again, but a satisfaction not felt in months – a victory savored – will help put the mind at ease as the body lays down for much needed rest.

Postscript on 12-14-09. There was a price paid for all this fun. I had no physical energy and was very stiff Sunday and went to bed by 8:00 p.m. But it was well worth it!

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“My health may fail, and my spirit may grow weak, but God remains the strength of my heart: he is mine forever.” Psalm 73:26

I hope that everyone had a wonderful Thanksgiving holiday. My oldest came home from college and we were joined by a few friends from church. Other than the 18 hours of cooking over two days, it was a pretty relaxing affair. The highlights are the pumpkin, pecan, and sweet potato pies. But for some reason, everyone but me takes a special liking to the pumpkin torte that my wife makes.

I’m taking a break from the RA Weapons series to discuss how RA causes adjustments in expectations.

On Friday after Thanksgiving, the Christmas lights were installed on the house. It’s a fairly straightforward task being that the design hasn’t changed in five years and three children joined in to help. After the lights were up, the snowboards and skis were pulled down from storage for adjustments, tuning, and waxing. The kids learned to wax their own equipment. It’s fun to watch the kids embrace this lifelong sport. There are numerous mountains within an hour or so that have wonderful ski runs.

After the few hours on these responsibilities, the body made it clear that it had enough. The next couple of days resulted in much rest and joint pain. And of course, the ski/snowboard work got me thinking about how realistic (or unrealistic) my expectations are for future activities. Of all physical activities, snow skiing ranks the highest for me. My skis were waxed the other day but I have no idea if/when skiing will be a reality. But the time will come very soon when we’ll load up the equipment and head to the slopes. I’ll try to ski but my expectations are quite low at the time given the fact that a simple job of hanging Christmas lights kicked me pretty hard. Fellow RA bloggers Terry and Kelly recently spoke about how RA caused them to adjust their expectations for life activities.

This leads to a broader reflection on changes in expectations as RA takes a toll and medication changes are tried. In October, my doctor switched me from Enbrel to Cimzia. The last monthly dose of Cimzia was injected on November 4th. The next injection is scheduled for this Wednesday. This will be the 3rd injection since switching over from Enbrel.

Fellow bloggers Terry, Kelly, and I are in the process of trying new medications and we all seem to be attempting to come to grips about what to expect in terms of effectiveness. All three of us can point to a time when we were completely off major medications and can attest to the fact that symptoms were worse during those periods than we were on the “ineffective” previously used meds. But what can we expect with the new medications? In order help track impact and attempt to answer this question, I decided to keep a daily journal of RA symptoms starting in early November. This journal will be taken to my upcoming rheumatologist appointment.

In addition to listing specific symptoms, I created a scale of 1-10 for both energy level and overall joint health. Overall joint health included pain, stiffness, and swelling. A high number is positive and a low number is negative. I also tracked the number of days with headaches since I suspect Cimzia was causing these regularly. A simple spreadsheet was used to track the daily scores. A graph (see below) was produced to display a pattern over time.

The first thing I noticed was that everyday seems to be different. The second pattern is that energy and joint health appears to be related. And finally, there is a slight downward trend over the month since taking the Cimzia injection. This is not surprising since the effects wear off over time. The expectation is that the upcoming injection will bring some relief (and maybe more headaches). Relief is my hope.

I’m considering creating some sort of tracking tool based on this process so that RA patients can easily track changes over time. Feedback from readers would be appreciated. You can contact me via email or leave a comment on the blog.

Will Cimzia work long term? Will snow skiing be in store? These are questions that can’t be answered right now and expectations must be tempered.

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