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We have organized these stories into two categories: Your Stories -- stories sent to us at the Spondylitis Association of America -- and selections from The Faces of Ankylosing Spondylitis project.
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By Maya Klauber
Thursday, March 20, 2014
John and Maya's paths first crossed near Rochester, New York at Sunshine Camp—an amazing, week-long escape for children living with muscular dystrophy. They met in the summer of 2003 when they were both volunteer counselors; John was 17 and Maya was 16. The pair remained friends for many years, seeing each other for only one week at camp every year. It wasn't until 2008 that they reconnected, realizing what a deep bond they shared. Maya and John now live together in New York City with their sweet beagle Penny. They were married on October 12, 2013 in Skytop, Pennsylvania.
Readers may remember Maya from the Winter 2006/2007 issue of Spondylitis Plus where we wrote about Maya's semester abroad in Melbourne, Australia when she was still in college, and also about her experience volunteering at a certain summer camp in New York for children with muscular dystrophy… You can revisit that original story online in our Spondylitis Plus archives. Our congratulations to Maya and John!
When two people decide to walk through life together, it calls for celebration. For some couples, this might mean a large, traditional wedding, while others may gravitate toward an intimate ceremony for two. If you are living with chronic illness, you know a key element in maintaining your health is limiting stress. Before embarking on the wedding planning process, consider what type of celebration is right for you. Don't venture too far out of your comfort zone. Whatever you choose, there are ways to ensure that you remain healthy and able to enjoy this exciting new chapter.
Marriage is about two people; partners who vow to support each other through good times and bad. However, no relationship is an island. Like it or not, marriage affects those around you and, if you're anything like me, those loved ones also have an effect on you. The night my husband John proposed, people already asked if we had set a date. If there is one thing I have learned from living with illness, it is the importance of pausing to experience the joy at hand. You may sense external pressure, but it is important to move only at your own pace. Make your health and happiness a priority. Take time to revel in your engagement.
I am able to offer this advice after making many mistakes of my own. I plunged head first into wedding planning, partly because of my own excitement and partly because I felt it was expected. I was soon inundated with tasks—setting dates, selecting color palettes, and booking vendors. Meanwhile, John and I were both graduate students, and my health was wavering. We rushed to set a date, which was the one weekend between our graduations and the start of John's medical residency. There was barely time to breathe.
I quickly felt like I was in over my head. Living with ankylosing spondylitis and fibromyalgia, two conditions that cause extreme pain and fatigue, means living with uncertainty. How could I plan a wedding when I had trouble planning for tomorrow? What if I could barely get out of bed on my wedding day? Before long, our limited time together was dominated by “wedding talk”, and the joy of our engagement was overshadowed by stress. This wasn't what we had envisioned for ourselves. We wanted to take our time and actually enjoy the process. Eventually we decided to postpone our wedding until the timing was right for us - one of the best decisions we've ever made.
Before jumping back into wedding planning, we needed to consider if a wedding was truly right for us. We communicated openly about my fears, and discussed other ways to celebrate. Ultimately we decided it was important to us that we share our marriage with friends and family. We knew it would take some creativity, but were determined to make a wedding work for us. We also took comfort in our incredible support network; loved ones who insisted we lean on them.
This time around, we chose our wedding date carefully. My pain levels have always been affected by extreme weather. We chose October not only for its beautiful foliage, but because it gave me the greatest chance of feeling well. Remember that nothing is more important than your health. While it's easy to get wrapped up in wedding details, make wellness your number one priority. Listen to your body and know its limitations. After all, feeling healthy on your wedding day will ensure you can enjoy it to the fullest.
I quickly recognized the need for order in the wedding planning process. I kept a detailed binder full of photos, ideas, checklists, etc. I also made sure to assemble a strong support network of friends and relatives. Because countless people offered their help and contributed their talents, our day was made even more special. If funds allow, consider hiring a wedding coordinator whose services can range from orchestrating your entire event, to stepping in shortly before the wedding as a “day of” planner. Don't hesitate to ask for help from the people in your life. Prior to your wedding create a detailed schedule of the day, listing where everyone needs to be and when. Distribute copies to family and close friends, and consider assigning people to specific jobs. For example, if you are taking family portraits, ask someone to start gathering your relatives ahead of time. This will not only help to ensure that precious time isn't wasted, but it will help you relax and focus on your wellbeing.
When planning the logistics of your wedding day, always consider your physical needs. For instance, if your ceremony is long, place a chair nearby in case you have difficulty standing. Include only traditions that work for you and your partner, and let go of ones that don't. John and I had taken dance classes and planned to perform a choreographed waltz for our first dance. However, three weeks before the wedding, these practices were wearing me down. Then I read this quotation: "A wedding is a party, not a performance. If at the end of the day, you are married to the one you love, then everything went perfectly.” We cut the dance, realizing this was one stress we could easily eliminate.
Since social situations have historically increased my pain, the thought of everyone we loved in one room was both wonderful and daunting. I worried about being in the spotlight, particularly if I felt unwell. Then a good friend offered an important reminder: this was our day, and I needed to allow myself to enjoy it. When making our seating plan, John and I opted to have a “sweetheart table”. This provided us with an important resting spot during our wedding; a place to reconnect, breathe, and take it all in. It also enabled me to spend less time on my feet. Instead of walking around during dinner to greet everyone, we stayed seated while our guests approached us.
The fashion you choose for your wedding day can also dramatically impact your ability to enjoy it. Every bride wants to look beautiful, but women coping with chronic illness should value their comfort above all. Look for a wedding gown that is lightweight and does not restrict your body. Similarly, allow yourself ample time to find the right footwear. Nothing can put a damper on your day quite like foot pain. Remember bridal shoes don't need to be five inches high—there are styles that are both special and practical.
Throughout the planning process, be sure to reserve time for yourself and for your relationship. Do things you enjoy as a couple unrelated to wedding planning. Dream about the future. If you are able to take a honeymoon, consider how you may feel after your wedding. Our bodies can still be negatively impacted by “happy stress”, so it is likely you may feel worn down. John and I fantasized about exploring rainforests or going on safari during our honeymoon, but we also needed to consider my health. In the end, we chose a relaxing destination that provided me with ample space and time to recover. We made time for adventure, but I was very grateful to have the option of doing nothing.
In preparation for your wedding, it is more important than ever to maintain healthy habits. Make sure you are eating properly, drinking enough water, and getting adequate sleep. If your goal is weight loss, implement a healthy plan well in advance. Too many brides resort to crash dieting or excessive exercise, placing greater value on their appearance than their health. For a bride with chronic illness, this can be particularly harmful. Above all, treat yourself with kindness. No matter how busy you get, keep up with your medical appointments. Explore alternative treatments, such as massage or acupuncture (your insurance may even cover these).
On the day of your wedding it is particularly important to keep your routine as normal as possible. Start your morning with a healthy breakfast, and remember to hydrate yourself. Ask a friend to hold onto medications you may need and check in with you throughout the day. These things can all help lower stress levels, alleviate your symptoms, and help you better enjoy your wedding.
Like many people, I grew up envisioning my wedding day—the perfect husband, the beautiful gown, and the happily ever after. Living with chronic illness doesn't mean you can't have your dream—it just means you need to thoughtfully plan ahead. For the sake of your health and happiness, cherish all of it. Things may not go entirely as planned but it can still be perfect. Feel the supportive warmth of family and friends as you take this remarkable step together. Bask in the joy of the present and the excitement of tomorrow. Above all, remember you are here because of love.
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