"In order to write about life, first you must live it." ~ Ernest Hemingway

Month: August 2014

Giving From the Heart

This may be a surprise to some, and not a surprise to others.

I never wanted a second wedding.

See, I never planned on marrying again, having been too tainted by nine long years in my first marriage. But you know what they say about best laid plans and all.

I met my current husband early in 2010, became friends with him during that summer, had my first date with him Labor Day weekend 2010, and then we became almost inseparable. And life as I new it changed forever.

When he proposed Christmas Eve 2011, I knew I was going to spend the rest of my life with him and I wanted to be husband and wife. I was, however, not thrilled about the prospect of planning a wedding. I was fine with scheduling a date with our minister, his wife, my stepchildren, my parents, and my brother.

Simple.
Easy.
Stress-free.

I wasn’t opposed to the idea of celebrating with our friends and family, but I was spending a lot of time, and I mean A LOT, dealing with various health complications from Sjögren’s syndrome and I had done the whole wedding thing before. I KNEW how tough it could get and I didn’t have the physical stamina or the desire to go through that again.

My husband had other ideas however and to him, the bigger the better. And I wanted him to have that; I just didn’t want to deal with all the planning that came with it. It took us months of discussion to negotiate this and to date, it is one of the two biggest negotiations that we have had to deal with as a couple, because we were on such different sides of the fence on this issue. We came up with a plan to hold a ceremony on one day and a casual BBQ reception two weeks later, with a honeymoon several months after that. Splitting it all up would be easier for me physically. My husband agreed to take a lot of responsibility for the planning and so I agreed. We were having a wedding.

Our ceremony was being held at out church and we expected about 70+ people to attend that. I was really on the fence about what to do about a dress. My husband really wanted to war a tux and honestly, I really wanted to see him in one so I figured I needed some type of dress. I am not a big fan of dresses. At first I was going to go with something casual, almost like a sundress, but after a few days of looking at different ones, I decided that I wanted something more appropriate for the occasion, especially with my husband being in a formal tux. I was only going to wear the wedding dress for the ceremony, as I would be wearing a casual summer dress for the BBQ reception. That meant that I didn’t want to spend a fortune on it. My bigger problem with the whole dress thing was this:

I couldn’t stand the look of most wedding gowns on the market.

All the dresses just looked so ridiculous to me…too much poof…too many sequins…too much EVERYTHING! I looked around at several bridal shops and scoured magazines and websites looking for something that screamed, “CHRISTINE”. I wanted to look beautiful, both for myself and for my new husband, but I wanted to feel like myself in the dress. I was thinking a vintage look was more my speed, but these dresses were so difficult to find without paying the equivalent of a down payment on a house. Frustration set in and four months before my wedding, I still did not have a dress.

And then all of a sudden, it happened. When I went back to one of the discount bridal stores, I found the dress. I know, so cliche. I saw it just sitting there on the rack amongst all the poof, the sequins, and the ridiculousness. I looked at it up and down, side to side. It was so beautiful and so unique, exactly what i could envision myself wearing with its vintage look. I was a bit concerned about how it would look on. It was an A-line design, which typically looks better on my apple-shaped figure than some other styles, but it also had a halter neckline and I so didn’t see myself going there.

But, I did. And the second it was on, it was like magic. My mom was with me and I could see by the look in her eyes that this dress was the one. The seamstress worked with me in making some alterations so I would not feel so self-conscious in a halter top neckline and then all of a sudden, I looked in a mirror and saw myself the way I wanted my husband to see me on our wedding day.

Photo courtesy of Susan Shea-Bressette

Our wedding day(s) came and went. As it got closer, I knew that having this wedding was the right thing not only for my husband, but for myself as well. He knew that right from the beginning, but I was too afraid in the beginning to see that planning a wedding didn’t HAVE to be stressful; that by planning a joyous occasion together, we could plan a truly happy occasion that didn’t feel like a burden.

It was honestly the best two days of my entire life and I will never forget it as long as I live.

Photo Courtesy of Susan Shea-Bressette
Photo Courtesy of Susan Shea-Bressette

Once we settled into married life, I began to think about my beautiful dress. I had gotten it cleaned and it was hanging in a garment bag on the back of my office door. I thought about how much I loved it, but what a waste it was just sitting there month after month. I don’t now exactly how I originally came upon the non-profit organization Brides Across America. Maybe it was on an online wedding site, or an advertisement. Brides Across America is an organization founded by Heidi Janson in 2008. She was inspired to do something special to express gratitude for the dedicated men and women of the United Sates Armed Forces.


Brides Across America began its work with a small network that donated time and resources to head up the inaugural program.  In that first year, fifty gowns were given away to military brides. They take donated wedding gowns and pass them on to a military bride in need. This can be a woman who is an active military member or is marrying someone who is. It is their mission to thank our military personnel for all that they do and sacrifice for us on a daily basis.

When I first heard about this organization, all I could think of was what a fantastic idea it was, especially at such a volatile a time when so many of our soldiers are fighting in despicable conditions, risking their lives on a daily basis, and their families often struggling just to make ends meet.

I procrastinated though and then a few weeks ago, I realized it had been over a year since we got married and there was the dress, still sitting on the hook behind my office door. A tangible reminder to me of not only a remarkable and beautiful day, but of this once-in-a-lifetime love I have been so blessed to find.

I realized that I needed to get the dress to Brides Across America if I was going to go through with donating my dress. I sent them the information about the dress and they agreed to accept it. I purchased a box at the post office and put it together on the sofa. I went downstairs to my office, unzipped the bag, and took the dress out; carrying it ever so carefully upstairs to the sofa where the box waited. I laid it out and then I cried.

I didn’t think I could do it.

My reaction caught me completely off guard. You see, even though I think of myself as an emotional person, I am also a very practical person and a minimalist at that. I don’t keep much around the house (for myself) that doesn’t have a use, if it takes up a lot of space.  And here I had this dress that I would never wear again, would never pass down to someone else, and yet, I was having a difficult time parting with it.

But then I thought of the fact that it was my parents that bought the dress for me as a special gift and I thought of their generosity. I thought of what it would be like to want a wedding dress and not be able to afford it. Most importantly, I thought of how much sacrifice military families make for me every day…so that I may live free and able to pursue my dreams. It was (barely) a plus sized dress, which can be difficult to find, and a very unique one at that. This dress had something special to offer someone. This felt like something I needed to do, even if it was difficult.

So I gently folded up my dream dress and put it in the box, along with a note to the bride who might wear it and before I could second guess myself, off to the post office I went. By this point, it should be sitting safely in the offices of an organization that does so much for other people.

In the week that has passed since I mailed the gown, I have thought a lot about how difficult it was for me to donate the dress. I am not a stranger to giving. I have donated more items than I can count; items no longer wanted or needed. I have donated my time to various causes. I have donated money, sometimes in periods of my life where I had no business doing so as I was trying to support myself with a disability check and overwhelming medical bills. But in that circumstance, I would always stop and think if where I was donating my money to needed it as much, or more, than I did.

But the dress was different. The dress was about giving away more than a possession. It was about giving away a small piece of my heart and that is what made it more difficult. It is easier to give away things that have no meaning or significance to us; we actually welcome the idea of that. It is easier to volunteer our time when life is less stressful and carefree. It is harder to give our time when we are juggling so many other important aspects of our life. When stopping to listen to someone makes the rest of our day more difficult, but we do it anyways. Those times are what it is like to give from the heart.

The dress has reminded me that the true spirit of giving is giving when we would actually prefer to keep. Giving it to someone who needs it reminds me of the generosity we received from our family and friends when we needed help with wedding plans or when their gifts helped us to experience our dream honeymoon at Disneyworld. It reminds me of the people who helped me in some of my darkest days, when I couldn’t cook or shop for myself. The dress reminds me to be humble and that the greatest giving is when we give from the heart.

Thank you, wedding dress.

Tarsal Tunnel and Plantar Fasciitis

I have to say, I REALLY wish I wasn’t writing this post right now. But, I am, so I am going to suck it up and share my experience with you in the hope that maybe someone can benefit from it, or that you can provide information in the comments section that may be beneficial to myself or another reader.

As I have posted previously, I began running last October. Since then, running, training for races, and improving my physical strength has become a godsend to me in terms of managing stress and in actually improving my Sjögren’s symptoms. Yes, you read that right: running has improved my Sjögren’s symptoms. From some of the research I have read regarding increasing endorphin levels (think low-dose naltrexone), I believe it is the endorphins and other feel good hormones that I get from running which has accomplished this. My chronically arthritic knees have IMPROVED and I no longer experience inflammatory joint pain in my knees, ever. Not even when other joints flare up. I don’t think that is a coincidence and have read about how running, when done correctly, has improved arthritis in some individuals.

Sometime around the end of May, I noticed that I was having pain in both my heels, not so much when I was running, but with walking and standing. I ignored it for a week or two, despite it being a new symptom. However, the pain continued to worsen and I decided to cut back my running and did not sign up for any summer races. This worked out OK for me because running in the summer is too difficult for me with the heat, sun, and Sjögren’s. I was still running about twice a week, usually on the treadmill in the air conditioned gym or early in the morning.

Within a few weeks, I decided to stop running for about four weeks as I was concerned about the worsening pain and despite stretching and ice, it continued to not improve. I talked to my rheumatologist in July as I was concerned about how painful it was to even walk and I was also have some swelling and pain in other joints, specifically my hands and shoulders. I knew my diet had been lousy and i was under a lot of stress at that time, so I wanted to try and got those issues in check before resorting to medication. My rheumatologist wanted me back on a low dose of prednisone. I never started it because again, I wanted to see if I could manage my symptoms with other means. I have already begun to have minor steroid-induced long-term effects and although this was a low dose, I wanted to try and resolve the issues without the prednisone.

And I did. Except for the feet issue. I was on a different combination of herbs, I worked on my stress, and completely cleaned up my diet and my hand and shoulder issues resolved. My fatigue even improved. But the feet kept getting worse. I had told my doctor and her fellow that this was a new symptom for me and I was concerned about it. Something just didn’t feel right. Being told to just go back on prednisone didn’t seem like the right way to find out what the problem was.

I decided to consult with a podiatrist and was very grateful to have several friends recommend a local podiatrist, Dr. Tammie Black. It was going to be a while until my appointment, but I figured I would tough it out until then. I tried not to pay too much attention to the pain. I tried running again, but shorter distances and paid more attention to cross training to reduce the impact on my feet. That lasted a week. I then started experiencing numbness and tingling in both my feet on a daily basis. I called the podiatrist again. She had a cancellation and I got in a month sooner than I was supposed to.

Well, thank god for that!

This doctor was great. She did some xrays (which I had previously asked for from another doctor and never got) and checked me out. I told her all the things I was doing to manage my symptoms. After a full evaluation, she told me I had severe plantar fasciitis and tarsal tunnel. I have had plantar fasciitis once before in one foot and it did not really feel like the symptoms I was having, but after she explained to me how having both can work, I could see that she seemed right on with her diagnosis.

I was already wearing orthotics in my sneakers but the problem was, I only wore my sneakers for exercise and walking distances, like when on vacation. Also, I ALWAYS go barefoot in the house and as much as I can outdoors, which contributes quite a bit to the problem. She instructed me to always wear my sneakers or get a pair of shoes called Vionic, which have arch support built into them. I just ordered a pair today and cannot wait to try them out because I have found in the past several days that wearing my sneakers all the time, while helping initially, seems to be making the nerve pain on the inside of my heel much worse. She also gave me two exercises to start on and I start physical therapy in a few days.

Since I’ve had plantar fasciitis, I was already familiar with it, but not with tarsal tunnel, The doctor explained to me that it is similar to carpel tunnel, but in the feet. It is even more difficult than carpel tunnel to effectively treat. She is hoping that if we get the plantar fasciitis under control, that the tarsal tunnel will improve, but time will tell. I asked her about the prednisone my rheumatologist wanted me to take and she said that prednisone would only mask the issues and that as long as I don’t need it for my other Sjögren’s symtpoms, that it would be better for now to wait on it.

Of course, we don’t know for sure what has caused all of this. I figured the running may have something to do with it, but then I found out that autoimmune illness can as well. Sjögren’s syndrome being one of them. As stated in an article entitled Neurological Manifestations of Sjögren’s Syndrome by Dr. Stephen Mandel which you can read HERE, tarsal tunnel is a mononeuropathy that can occur with this illness. It can also occur in rheumatoid arthritis. But at this point, the bigger issue is not how it happened, but taking care of it now that it has happened.

It’s frustrating that’s for sure. My doctor made it very clear to me that even though she appreciates how much running means to me, if I want to get better (and not worse), running needs to be stopped. So much for the fall races I have planned. But I know she’s right. My husband and I were away for two days after my appointment and I cannot even tell you how difficult it was for me to walk or stand the time we were away. Pain and numbness were my constant companion. At the gym Friday morning, I went on the Arc Trainer and elliptical, as those have both proven invaluable to my exercise regime when my joints act up. But, the pressure on my feet was too much as was the resistance on the bike. So tomorrow I am going to try and do a water aerobics class because if I stop exercising completely, my joints and muscles will all go haywire.

It seems like, and I’m sure anyone who reads this blog regularly would agree, that it seems like it’s always something with me when it comes to my physical health, most of which can be attributed to this unrelenting autoimmune illness. But, like all the challenges I have faced, it is just one more obstacle to overcome and conquer…hopefully!