Posts Tagged ‘family’

It’s that time of year when holidays are celebrated including American Thanksgiving and Christmas. It’s my favorite time of year given all the sights, sounds, smells, foods, and time with family and friends. Our house serves as a gathering spot for many college students and other young adults. Because of this, the hustle and bustle of the season takes over for many weeks. I don’t want to be a Scrooge but the symptoms of RA are getting in the way.

We recently had 16 people at our house for Thanksgiving. That required a full day of food and house preparation. I got up early in the morning to smoke a turkey because one in the oven would not be enough. I served as a host all day and even took a nap during the day. By that evening I was fatigued beyond comprehension and every joint was screaming loudly. I went to bed but was up by 2:00 a.m. with a raging migraine that had me vomiting by 6:00 a.m. and taking Vicodin by 10:00 a.m. The rest of the day was a waste as I lay around trying to keep the headache at bay. I definitely paid the price.

By Sunday afternoon I was feeling better and proceeded to go outside on a rare sunny day in Seattle to put up Christmas lights. This has become an annual family event and I was not about to miss it. I got the ladders out and proceeded to climb on the roof to hang lights. Suffice it to say that a person who’s had three ankle surgeries should probably not walk around on ladders or a roof. But I was bound and determined to participate in this annual event. By nightfall the house looked wonderful as I waddled into the house to rest…which meant collapsing in a chair with an ice pack on my hip and not getting up for several hours. By the time I got up to get ready for bed, my ankles, knees, and hips screamed loudly in protest and I could barely get up the stairs. Even after two cortisone shots in the left trochanteric bursa over the past couple of months, the pain and swelling continue to cause so much pain that walking, sleeping, and sitting are difficult. This will be a point of conversation with my rheumatologist next week and we’ll see where that leads.

The bottom line, I refuse to let RA dictate my life. But I have to be ready to pay the price!

Creative Commons Photo Credit: http://commons.wikimedia.org/wiki/File:Christmas_lights_-_1.jpg


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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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It’s been a long year for many reasons including a job change at work with increased responsibilities, constant experimenting with RA medications, four children all in or approaching the teen years, and an extraordinarily rainy winter/spring in Seattle. The good news is that it seems the Humira injections are working at keeping RA symptoms in check. Once the opportunity presented itself, a vacation was in order. Our family usually takes vacations in mid to late August but this year we left as soon as possible.

In the past, family vacations meant lots of physical activities. Damaged joints over the past few years from RA caused me to make changes to my lifestyle. But I was determined that my issues would not impact the rest of the family. So we loaded up the van and headed off to Montana. The Rocky Mountains offer resplendent beauty with snow-capped peaks, large open valleys, and lots of sunshine. With the rugged terrain came multiple opportunities to get outdoors.

Before leaving, a list of possible activities were made and upon arriving the list was whittled down to a manageable set that were within budget. The place we stayed in Big Sky, Montana included a pool and many bike trails. There were many short hikes to waterfalls and other panoramic views including the Upper and Lower Falls of the Yellowstone River. Glimpses of bears, elk, and huge herds of bison were the high points of a jaunt into Yellowstone Park that ended with buffalo burgers for dinner.  All of these were quite exhilarating in their own right and put enough strain on my body to let me know that I needed to slow down.

But the hallmark of the trip in terms of sheer joy and physical intensity was a three-hour white water rafting trip down the Gallatin River. I was determined that RA was not going to stop me from this experience. The first reminder of RA was the medical release form where I had to check off my “medical condition.” With the help of a guide, we navigated level III-IV rapids in freezing cold water. The experience was amazing (see photos)! At the end of the trip, I could barely pull myself out of the raft. Every finger, elbow, knee and ankle let me know that it was swollen and inflamed. But the mental high made all the physical pain and stiffness worth every minute.

It’s important to know the limits RA puts on your body. But I’m determined not to let it limit life’s experiences too much.

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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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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.

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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Pushin’ It

It’s nice to be back at the keyboard after a two week hiatus with two trips…one to San Francisco for a work conference and one to Illinois for a church conference. Since being on Enbrel for almost 3 months now, I’ve felt like I’ve been doing quite well. I’d say about 70% of normal energy and 50% better on joint pain. So, off on two major trips I went.

Travel is always stressful for me. There are the long lines, waiting, shuttling around, flying in cramped quarters, luggage, new foods, time changes, climate differences, and sleeping in unfamiliar beds. I had great times in both places. SF is always beautiful and I stayed right on the waterfront at Enbarcodero. The highlights included a visit to Chinatown (I actually walked there twice…my knee reminded me) and eating the most amazing halibut steak I’ve ever had. I got back home, had a couple days rest, and then headed off to the heat and humidity of Illinois. Given the time and climate changes, this trip was harder but I coasted along because I enjoyed going back to where I used to live, visiting friends, and attending an amazing church conference. I received prayer for RA several times. No changes yet but I’m always hopeful.

Upon getting home, I had a two days to get ready for my summer teaching assignments and a week long visit from my in-laws. Yesterday, everything caught up with me and RA and fatigue raised it’s ugly head. The morning started out fine. I felt rested and everything was in place. But by noon I had lost my appetite and was crashing on the sofa. My visiting family wanted to visit Pike’s Market in Seattle so I got up and served as a tour guide. Upon getting home, I once again hit the couch for a long nap. By 8:00 p.m., I was done. I ate, jumped in the hot tub, and went to bed promptly falling asleep. The previous two weeks finally caught up with me.

I felt guilty that I crashed right at the time of the visit of my in-laws. My wife knew what was going down but they weren’t aware of what RA is doing to me. But I can point to several good things to come out of this series of events. I see that this could be an educational time for my extended family. They know I have RA but probably don’t understand all the symptoms. I’ve learned (once again the hard way) to slow down and not push myself so hard. When my body screams at me for rest, I have to stop, tell everyone no, get some rest, and not feel guilty about it. They all ran off to Mt. Rainer today and I headed into the office for the day. I got good sleep last night and It actually feels good to be sitting quietly and back in a normal routine. Maybe next time I won’t plan so much (probably not…I’m stubborn)!

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Proverbs 27:17 – As iron sharpens iron, so one person sharpens another.

I’ve been thinking about how important it is to have a strong community when dealing with rheumatoid arthritis. What kinds (notice the plural) of community are needed for those with RA? I attempt to outline a few in this post.

Family and Friends. I’ve heard that people who don’t have family or friends tend to be sicker and live fewer years. This applies to everyone but maybe even more so to those with a chronic illness. Those with whom you are closest can love and care for you unconditionally, see you on a regular basis, and can better understand your condition. And remember, RA also affects the lives of those closest to you. They oftentimes are required to pick up the slack.

The medical communityis critical. Medical staff may include physicians (generalists, rheumatologists, orthopedic surgeons, etc), nurses, physical therapists, lab techs, and others. Those with RA who keep regular doctor appointments and have long term treatment tend to do better and live longer. Sometimes it takes a while to establish strong relationships with medical staff. Finding a good doctor is a struggle for some. But persistence and research can pay off.

Social Networks/Support Groups. While family, friends, and medical professionals are important, only those with RA can fully understand the issues from all angles – they live it. I encourage all with RA to find networks of others with RA who can relate and communicate. Those networks may be local and/or virtual. The Arthritis Foundation offers links to local support networks and activities. While face-to-face interaction is important, it may not be possible for everyone considering the geographic location. The internet provides an excellent venue in a virtual environment. There are many social networks devoted to RA. But I’ve learned that you must be careful when choosing a network. Chronic illness can sometimes bring cynicism and negative attitudes in people. I find that many postings about treatments and medicines are from people with negative experiences. The most positive and supportive network I’ve found thus far is MyRACentral.  Whatever kind of network you find, it is critical to stay connected and fully participate.

So, get out there and get connected!

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