Tuesday, October 14, 2014

Hearing God

A few weeks ago, I was going through a particularly challenging time with my health issues. I felt like I was caught in the hamster wheel of the medical world yet once again. Of course, I am always caught up in the medical world because of this chronic illness, but some times are worse than others. Usually when I am attending more than two medical appointments every week, that is a sign that the hamster wheel is going too fast. I was on and off antibiotics and larger doses of steroids for three consecutive sinus infections since May, I found out that my immune system wasn't working properly, I was having issues with my eustachian tubes in my ears, which was causing a lot of pain and some hearing loss, and the list went on and on. I had a vacation coming up and I wasn't even sure how I was going to pull that off....

During this time, out of the blue, I received an e-mail from the pastor of St. Paul's Episcopal Church in Suffolk, Virginia, Rev. Keith Emerson. He had been doing an internet search on Matthew 21 from The Bible and the topic of being beaten down in life. This search brought him to a blog pot I wrote on February 26, 2012 called "Beaten Down and Other Musings." I had been going through a particularly dark time when I had been dealing with some life-threatening medical issues including a run in with Guillain-Barre and some blood clots that were found in my lungs.

So Rev. Emerson wrote me, told me how he came upon my blog, and talked a little about the meaning of Matthew 21 and his words were profound and very timely. His words of encouragement calmed me and him mentioning that previous blog post also reminded me of how much worse things were in the past and of how strong I really am. It comforted me to know that a total stranger, somewhere in this world, took the time to care and reach out to me.

I eventually went and read Matthew 21 later that day and I also went back and read that old blog post. By doing so, I gained some perspective into my current situation.

In that moment of reading that e-mail, and in all the moments that followed, I truly believed that God was speaking to me through this stranger, in a way that was clearer to me than it had ever been before:

Keep going.
Don't give up.
You are strong.

I did reply to his e-mail and Rev. Emerson sent me the link to his blog, the one which contains the sermon he ended up writing. He informed me about the positive effect it had on a member of his congregation. This was such a prime example of how God uses each of us in order to make a difference and how telling our stories can make an impact on the world.

I have included the sermon below. You can visit Rev. Emerson at his blog by clicking here: Check Out The Sermons


October 6, 2014
Beaten Down/Raised Up
Rev., Dr. Keith Emerson

The tenants seized the slaves and beat one, killed another, and stoned another.  Again the vineyard owner sent other slaves, more than the first; and they treated them in the same way.” 

Here is one of my all-time favorite stories.  It will give you a chuckle, not a laugh, but it comes back to me again and again.  A man owned a bakery that was famous for two things: fabulous, fresh-baked bread and a talking parakeet. The bird repeated almost everything the baker said.  Well, as you can imagine, the shop was very popular and at different times of the day was jammed with customers.  It was not uncommon for multiple people to shout an order at the same time.  In the face of such an onslaught the baker would insist, “One at a time!  One at a time!”  One day the unthinkable happened: the parakeet escaped out the front door of the shop.  The baker, only a step or two behind, dashed outside and spied the parakeet perched on the branch of a nearby tree where it had already attracted the attention of a huge flock of mean-spirited crows.  Dozens of birds were diving at the parakeet from all directions.  It was then that the baker heard his parakeet squawk, “One at a time! One at a time!”

I suspect each of us knows what it feels like to be that parakeet.  No one gets through life without being challenged, and my experience is that challenges don’t confront us in a nice, orderly fashion. They tend to come in bunches, don’t they?  Doesn’t the old expression ‘kick a person when he is down’ hint that challenges tend to attract more challenges, hardship seems to begat more hardship, affliction has a way of multiplying, and tough times often test us with even tougher times.  At one time or another, everyone one of us has been that parakeet in the tree. Some of us are ducking for cover right now and screaming or pleading or begging with all our might, “One at a time!  One at a time!”

Earlier this week I happened upon a blog post written a few years ago by Christine, a forty-year-old woman who lives in Massachusetts. She has been diagnosed with Sjogren’s syndrome, an autoimmune disease that attacks the glands that secrete tears and saliva.  Some time after she began to deal with this, Christine developed blood clots in her lungs.  Then she was diagnosed with Guillain-Barre syndrome, where the immune system attacks nerves and leads to profound muscle weakness.  More treatment led to head pain, nausea, and increased tremors.  Add to this dealing with health insurance, which is not easy even under the best of conditions, as well as the day to day challenges we all face (her computer crashed) and it is pretty easy to understand why Christine gave her post the title “Beaten Down.”

“My body wants to feel pretty again,” she wrote.  “It feels disfigured from the bruises and the rashes.  From the hair that is starting to fall out, from the steroids and the often pale, makeup-less face that stares back at me in the mirror... the darkened eyes that used to be so much more vibrant.   My body does not understand that it is an effort to get it clean every day right now.  Will I ever be able to do an activity again for more than ten or fifteen minutes without needing to sit or lie down,” she wondered? “Will I ever be able to stoop down again without falling over or needing help to get up?  Will I ever be able to shower and wash my hair again without it being this epic event that exhausts me and makes me shake?”

Some of you have been in that place, others not far from it, and surely the rest of us can sympathize with Christine and her plight.

When Jesus tells a parable he invites us, the listeners, to locate ourselves in the story.  Which person or character are you?  We may see ourselves in multiple characters, or, as our life changes, may recognized that we have shifted from one person to another.  Where do you see yourself in today’s parable of the vineyard owner and the wicked tenants?  If things are going well then you may not identify with the servants and messengers who are treated rudely, disrespected, beaten, and/or killed. But my guess is there have been times in your life when you are they and they are you.  You don’t have to have been victimized by thugs to fill their shoes.  Sometimes life itself is the thug and it hits us with more than we can handle.  As with Christine, it may be health crisis.  It might center on a relationship.  It could involve employment.  Life has lots of ways to beat us down.

When I was younger I had a problem.  I believed that life should never do me wrong.  It wasn’t like I had never been challenged.  My father died when I was twenty.  I had the girlfriend or two who broke my heart.  I had a friend or two that betrayed me.  But I was making the path for my life laying one brick at a time and it seemed that nothing could or should get in my way.  That assumption was challenged mightily after I graduated from seminary and took my first job as an assistant to the rector of a parish.  Nothing in life had prepared me to work with a person as dysfunctional as he was.  He meddled and manipulated and basically made miserable both my professional and my personal life. To make matters worse, I was completely unequipped to deal with such a person and that is a recipe for disaster.  Eventually, I was unemployed and nearly broken by the experience.

Last week I told you about a decision I had to make: keep my word and work for a church whose job offer I had accepted, or break my word and accept a new, second offer.  That dilemma came during this time of unemployment.  I hope you remember the counsel I received from priest who had welcomed me into the Episcopal Church (“What do you want your word to be worth?”) and the letter he wrote to me (“Blessed is he who giveth his word to his brother and dissappointeth him not… even though it be to his own hindrance”). You may recall I said that letter was the most powerful and formative correspondence I have ever received.

What I shared with you last week was the first part.  Today I want to read the second half, which addressed the residue I carried with me after the pain and disappointment of my first calling:

You may feel your experiences in ministry to date warrant cynical and angry responses.  The truth is that negative experience does not exist.  There is simply experience.  The Lord is with us when we use our experience to deepen our love and to strengthen our praise.  The cross was not a “negative” experience.  On the contrary, it is for us the ultimate witness to the power of God to evoke grace in every circumstance.  I pray that you will be entirely free of the fault of resentment which will rob you of all joy and disable you as a man and therefore as a minister.  Let all clamor cease in your heart, and if that is not possible, lay that fault penitently and incessantly before God in prayer.  Resentment and self-pity are the virtuous vestments put on by unregenerate egotism for disguise. No one, of course, is deceived, except oneself. 

Congratulations on your new appointment.  Accepted with humility and offered in love, your ministry will be blessed.

Over the years the truth and wisdom of his words have been born out in my life time and again.  Life, like the ocean, is what it is. Sometimes the tide goes out, sometimes it comes in.  Some days are calm while others are rough and choppy.  There are days when everything is as you would like it to be and other days when a hidden rip current is ready to take you for a ride into the unknown (and unwanted).  More than when I was younger, I now receive moments of grace with thankfulness and humility and I am better at facing adversity with joy, faith, and patient acceptance. To quote again my friend,“The cross was not a ‘negative’ experience.  On the contrary, it is for us the ultimate witness to the power of God to evoke grace in every circumstance” and “the Lord is with us when we use our experience to deepen our love and to strengthen our praise.”   I see and sense that better now than I did years ago.

At the end of Christine’s blog post she writes this:

I was sitting in church this morning and looking around at the various people scattering the pews and wondering how many of them were feeling beaten down right at this moment?  Or wondering how many of them had maybe felt beaten down at a different time in their lives?  A time where some things did not make sense or that they felt they had endured more than their fair share of beatings so to speak.  I don’t have to know all of their stories to know that those stories are there in some form or another.  Tales of survival. Tales of people who became stronger and more compassionate people because of what they had to endure.  Journeys that were easier than mine and definitely journeys that were more difficult than mine.  People who were beaten down but yet rose up.  Again. And again.  And again.  Just like I will.

Her words remind me of the ancient Japanese proverb: “Fall seven times, stand up eight.”  “My strength didn’t come from lifting weights,” another person said.   “My strength came from lifting myself up every time I was knocked down.”

In the parable he told, Jesus is of course the son who is killed, as he himself one day will be crucified. He then quotes a rather obscure psalm that describes how the rejected stone becomes the cornerstone.  The message for us is straightforward: Life’s challenges and trials have a way, through the grace of God and the power of resurrection, to make us stronger, better, and more useful than we were before. We who gather here this morning are stones weathered and hewed by the experiences of life, yet witnesses to God’s grace to use every experience to evoke a working of grace.

Monday, October 13, 2014

Type 1 Diabetes and Walk To Cure Diabetes

Type 1 diabetes, also known as insulin-dependent diabetes or juvenile diabetes, affects as many as three million Americans every year. Approximately 85% of those affected are adults and 15% are children. For those of you not familiar with diabetes (also called diabetes mellitus), it is a chronic illness in which the body has difficulty regulating blood glucose levels in the body. There are two types: Type 1 diabetes, which is a disorder of the body's autoimmune system. There is a lack of insulin due to the breakdown of islet cells in the pancreas. In contrast, Type 2 diabetes, also known as non-insulin dependent diabetes, is a metabolic disorder in which there is insulin resistance.

In Type 1 diabetes, the affected individual must take insulin to stay alive. This means that they frequently monitor their blood sugars throughout the day and give themselves regular doses of insulin, either via an injection with a syringe or via an insulin pump. They must carefully balance their food intake and exercise to regulate their blood sugar levels so that their level does not fall too high (hyperglycemia) or too low (hypoglycemia). The consequences of going to either extreme can be severe and life threatening. The long-term complications of the illness can follow a person throughout their lifespan.

I do not have diabetes, but my experience in working as a nurse with diabetics has been extensive throughout my nursing career. My previous job was as a pediatric nurse on an acute inpatient unit and we frequently had children with Type 1 (and even Type 2) diabetes on our unit. They were either newly diagnosed or had encountered a complication with their diabetes that required hospitalization and stabilization.

However, it wasn't until I started working as a school nurse this past Spring that I even began to comprehend the impact of Type 1 diabetes on the daily life of a child. In the school system that I work in, there are five children with diabetes ranging from elementary age to high school age. One of them does self injections and the other four wear insulin pumps to help regulate their blood sugars. As nurse who worked previously in an acute care setting, we only saw a brief snapshot of what it was like to be these kids every day. We got them better and sent them home. However in a school setting, you have an opportunity to see the complexity of managing a child's blood sugars, diet, and activities. It's a fine balancing act between keeping them healthy, while still allowing them to be a child.

The slightest event can throw off a child's blood sugars and precipitate a bigger issue. A larger than usual portion of a particular food at lunch, more playing at recess, the beginning of cold symptoms, the list goes on and on. That's why these kids check their blood sugar a MINIMUM of six times a day...and that does not include the insulin doses that must be given. Can you imagine being a child and having to deal with that kind of medical regime??

But, they do. And I will tell you, most of them do it very well. Children are remarkable and I will admit that I am in awe of how my elementary and middle-school age kids deal with their illness. They could teach the adults in this world a thing or two about acceptance, not complaining, and enjoying life, despite the obstacles that are placed in front of them.

With every child that has Type 1 diabetes comes parents, siblings, relatives and friends that also are affected by diabetes. This is not an individual illness, but rather one that the whole family must learn to adapt to and live successfully with.

It came to my attention recently that one of my students with Type I diabetes, Gabbie, is participating with her family in the JDRF's Walk to Cure Diabetes. Gabbie is a bright, beautiful, and spunky third-grader who is fighting, along with her family, to held end Type 1 diabetes. She is a daughter, a sister, a friend, and from what I hear, a budding gymnast. She does not let her illness get her in the way of living her life to the fullest.

The JDRF (Juvenile Diabetes Research Foundation) is the leading global organization funding Type 1 diabetes research. At this point in time, there is no cure for Type 1 diabetes. The JDRF Walk to Cure Diabetes is their flagship fundraising event. There are 200 walks held nationwide and similar to other non-profit events of this nature, you can raise money and then walk either an an individual or as a team. Gabbie and her family will be walking Sunday, October 19, 2014 at the JDRF event being held at Six Flags New England in Agawam, Massachusetts. Registration begins at 8:30 am and the walk begins at 10:00am. The walk distance is 1.5 miles and you can get more information about the event by contacting Joseph DiMaggio at the Greater Connecticut/Western Mass. Chapter at (203) 248-1880.

To date, Team Gabrielle has achieved 84% of their fundraising goal, which is $3,000.00. You can donate to Team Gabrielle bu clicking this link: Team Gabrielle. No amount is too small and every dollar donated makes a difference. Please consider helping Gabbie and her family make a difference in the lives of so many affected by this illness.

Thursday, September 11, 2014

Boston Sip For Sjögren's

On November 16, 2014, the Sjögren's Syndrome Foundation (SSF) will be holding their first Boston Sip for Sjögren's event in Cambridge, Massachusetts. Sip for Sjögren's is a fine water tasting event which includes a reception and silent auction. Guests will have the opportunity to sample some of the finest bottled waters from around the world. Those waters fall into five different carbonation levels which include still, effervescent, light, classic, and bold. Two bottles from each level are provided on round tables throughout the room. Each water has a tasting card that provides various details about the type of water and background on its origin, etc. A short program will accompany the event. All proceeds will benefit the SSF, the only national non-profit dedicated to increasing research, awareness, and education for Sjögren's.

This is very exciting news as this is the first time that a Sip for Sjögren's event will be held in Massachusetts. I think it may even be the first one to take place on New England, but don't quote me on that! I was asked to be a committee volunteer and that is what I am going to talk about here. My biggest responsibility is to secure corporate/individual sponsorship for the event, as well as obtain silent auction donations. I will describe both below:

Sponsorship Opportunities for Companies and/or Individuals:

Presenting Sponsor - $5,000

  • Logo/name to appear in association with event.
  • Opportunity to address participants at event
  • Logo/name most prominently displayed on event invitation, event program, event signage, and foundation website
  • Recognition in all event media exposure/outreach and press releases
  • Acknowledgement from the podium
  • Ten (10) complimentary tickets to event
  • Recognition in The Moisture Seekers newsletter
  • Additional opportunities discussed with SSF

Platinum Sponsor - $2,500

  • Logo/name displayed on invitation, in event program, and on event signage
  • Recognition from the podium
  • Eight (8) complimentary event tickets
  • Recognition in The Moisture Seekers

Gold Sponsor - $1,500

  • Logo displayed in event program and on event signage
  • Recognition from the podium
  • Six (6) complimentary tickets to event

Silver Sponsor - $500

  • Complimentary name displayed in event program and on event signage
  • Four (4) complimentary tickets to event.

Bronze Sponsor - $250

  • Company name displayed in event program
  • Two (2) complimentary tickets to event

To receive full benefits, presenting and platinum sponsors must confirm by September 29, 2014. All other sponsor levels must be confirmed by November 3, 2014

Silent Auction Item Ideas:

Sporting events
Gift certificates
Gift baskets
Lessons (cooking, music, etc.)
Concert/museum/movie/zoo tickets
Professional services such as catering, photography, massage, florist, personal trainer, etc.

Really, the sky is the limit!!

If you are interested in becoming an event sponsor or if you have a silent auction item you would like to donate, please e-mail me at cmolloy435@charter.net and I will e-mail you the necessary forms and instructions.

Stay tuned for more information on ticket purchases if you would like to attend this event on November 16th!

If you follow this blog and are a blogger yourself, please share this post with your readers. Also, I would appreciate readers sharing this blog post on your Facebook, Twitter, and other social media sites.

Thank you!!

Wednesday, September 10, 2014

Being Visible With An Invisible Illness

This week is National Invisible Awareness Week and I figure it is as good a time as any to get back to writing since apparently, my last post was a month ago. I have no good excuses. Life has been busy, and I have been enjoying living it.

I won't get into all the details about why I have been busy; some of it has been simply having fun and some of it has been being there for other people or personal obligations. Whatever the reason, the past week or two has been more of a struggle physically than I am comfortable with. That's the thing about an invisible awareness: I struggle every single day, almost no exceptions. I have done a pretty good job at working those struggles into my life and accepting them, but the problem with that is, I appear completely fine most of the time on the outside. When in actuality, my body is falling apart bit by bit on the inside.

It's a double-edged sword for most of living with an invisible illness. For example, I do not want to be known as or come across as a "sick person". I try to take care not to complain too much on social media and I make a very noble effort to not cancel out on plans when I am not feeling well. However the problem with this is that people forget that I do have limitations. Because I am trying so hard to make the life I do have count for something and to not waste too many of my days, I even forget that I have limitations.

As I have written about previously, I went back to work last Spring in an attempt to get back into the nursing profession. I work in a school as a substitute school nurse and had the summer off. Once I am back to work, I absolutely have to back off on all non-work activities and watch my stress in order to avoid a flare-up in my symptoms. My experience with working thus far is that for every day I work, I need at least two days to recover. Between the joint pain, muscle pain, eye issues, fatigue, and brain fog, sometimes one day of work feels like three or four days. And to be honest, it is worth it. I enjoy being back to work that much.

That is a huge reason why I have been so busy lately; because I knew I would likely be getting called soon to go into work and I wanted to do some quality living before that happened. Not that I don't enjoy myself the rest of the year but like I said, it needs to more limited and thought out.

So this past weekend, I knew I wasn't doing all that great; the fatigue was overwhelming, to the point where I would cry in the car on the way home. And the fatigue felt much worse than what I'm used to and I knew something wasn't right. But, I followed through with my commitments, had some fun along the way, and sure enough, all hell broke loose: migraines, sinus pain, ear pain, joint pain, and chills. I forced myself to go to my water aerobics class Monday morning and almost passed out. I started treating myself with decongestants, acupuncture and a neti-pot, with some relief, until my asthma acted up the worst it has in years, on Tuesday night. Two times using my rescue inhaler and I knew I was doctor bound first thing this morning.

What is wrong with me in itself is not a big deal. I have something viral (if I am not better by Friday, I go on antibiotics) that is affecting my sinuses and subsequently, my lungs, which were not moving as much air as they should be. Any type of infection always flares up my autoimmune symptoms, especially the fatigue, and it gets more complicated for me than for many other people. A steroid nasal spray and a steroid inhaler should hopefully fix me up quick. I am really hoping to stay off oral steroids as I just passed the six month mark of being off them and let me tell you, that is a rare occasion indeed. Granted, my life might be easier on them, but since I have already started to develop some minor long-term complications from them, they are a last resort.

To be honest, I wasn't being as careful as I should have been. Not just because of my schedule, but because this time of year is ragweed season and I have a severe allergy. Despite my symptoms, I was depending on one allergy supplement (which apparently wasn't managing things) and allergy shots, and hence the sinus/lung issues emerged. But isn't that almost a good thing in a way? Instead of spending every day thinking, worrying, and dealing with every little physical symptom that crossed my path, me and my invisible illness were taking advantage of opportunities in a very visible world.

There is something very important I have learned from all this. Nope, it's not about balancing your life with a chronic illness. Believe it or not, I already learned that lesson a while ago, even if I don't get it right some of the time. I have learned that since I have to live with this illness the rest of my life, and most likely will not see a cure in my lifetime, that I have to make sure to do this one thing:

I have to live my life.

I have to take advantage of all the days where I can get out of bed more easily. I have to stop worrying about when the next big autoimmune crisis will come. I have to stop worrying about how clean my house is, especially when there is some better way to spend my precious energy. While I cannot ignore my illness, it is important for me to sometimes act "as if"...act as if I am not sick...act as if I can do anything. Because honestly, sometimes I think having this illness is more mental than physical. I see that in myself and I see it with others who battle this illness every day.

So if you are reading this and you do have some type of chronic illness, try to be more visible, Do something, anything. Educate people around you about your illness. Sit in a library and read a book rather than by yourself at home. Talk to people while you are waiting in line at the Social Security office. Take a risk and go away from home overnight without ruminating over all the "what ifs" that can happen.

If you are reading this and you do not have some type of chronic illness or health issue, I will admit, I am a bit jealous. I get especially jealous of people who are healthy physically and mentally and then don't take advantage of their good fortune. Stop wasting time over the drama around you. Get outside. Volunteer to help those less fortunate.


Sunday, August 10, 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.


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.

Sunday, August 3, 2014

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!

Saturday, July 26, 2014

Community Supported Agriculture

Today is Wednesday, my favorite weekday during the summer now. Why, you ask? Because it's the day I go to a local farm and pick up my crop share from a local Community Supported Agriculture (CSA). I had toyed around with the idea last year of getting involved with a CSA, but was a bit uncertain about the whole thing. Then this past winter, a friend of mine asked if my husband and I would like to split a share as a whole share was too much food for her two-person family. With it just being my husband and I at home, I figured it would be a good way to try it out.

There are different options for how you want to pay and you can either pay the whole amount up front or pay in installments. The total price of our share, for the two of us, was $795. This included an additional fruit share which cost us over $100 for the season. This seems like a lot of money, but for two households, for twenty-four weeks, it is not. The breakdown for each of us is $16 per week. I will tell you right now with the amount of food we get, it is a bargain. The farm we chose is organic and organic produce is a lot costlier. Last week's share for me and my husband would have cost us around $35 in the supermarket, instead of $16. And that doesn't even include what we got from pick-your-own. I don't know what other farms do, but our farm has a sliding scale system for payment so there is some flexibility for those who have income issues.

So each every Wednesday, we go to the farm to get our produce. There is a list of what is available for that week and as you go around the farm stand, there are labels for how much you can take of each item. For example, last week, we were allowed two zucchinis, 1/3 pound of fresh basil, etc. This way, there is enough of each item for all CSA members. Heather and I usually split every item in half, but not always. Sometimes you only get one of something that cannot be split and in that case, we compensate by the other person taking something more of another item or taking one of a different item. Sometimes there is something that one of us doesn't like and then it does not go to waste because the other person will take it. Heather gets all the cilantro for example because I HATE cilantro and won't cook with it so my husband doesn't get it either!

Because the produce is picked right off the farm, it is super fresh. I have had heads of lettuce, properly stored, last me over two weeks. I didn't realize how much freshness is lost on produce when you are buying from a supermarket that is not purchasing local, or when it is sitting in the supermarket for days and days. You can also freeze a lot of your produce for use during the colder months.

Another perk of a CSA is that you get to pick-your-own with items in season. I never thought I would enjoy this as much as I have. I do have a tough time in the sun in the summer, even with sunblock, so I tend to go early in the morning. I check the map, see what is available, how much I can pick, and get to work. There is something very therapeutic for me about going into the fields and picking the food you are going to eat for dinner that night, or sometime during the next few weeks. I have picked my own strawberries, green/yellow beans, and sugar snap peas. Sure, it's more work because you pick them, bring them home to wash and store them versus just picking a package off the shelf, but the quality and taste is so worth the effort.

Probably one of my favorite features if the unlimited supply of pick-your-own herbs. This was a totally new venture for me. I had no idea what to do with herbs, what foods certain ones are good with, etc. However, I had been experimenting more with bottled herbs since I started eating Paleo/Whole 30 and I figured that fresh herbs would make our meals all that much better. So I did some research and started drying herbs. I have enjoyed seeing how the different herbs actually grow in the fields and on any given day, you will see rows of herbs drying from our kitchen baker's rack. I have dried basil, rosemary, dill, thyme, sage, oregano, chive, savory, and parsley. I'm sure I'm forgetting some! Again, this takes a bit of effort, more so than picking your own vegetables, but the dishes I have made with these herbs have been outstanding; no comparison!

There have been quite a few benefits for my husband and I with using a CSA, besides the money saving aspect. I have made a commitment to not waste any of the food that we get from the CSA. Mostly because any unused food from the farm goes to feed the staff and homeless people and I would feel terrible if I wasted something that someone else could have used. This means that oftentimes, I force myself to try a new food and I cook with more vegetables than I normally would have prior to this season. As my family well knows, I grew up hating most vegetables and it has been a huge process to get past that and actually TRY them all. I have come to find that there are very few I absolutely won't eat (i.e. tomatoes). For the most part, the ones I don't eat, I shouldn't anyways because they can be bad for people with autoimmune issues (tomatoes and eggplant). I think my body kind of knows it shouldn't eat them

Anyways, being involved with the CSA has gotten me to try new things, in order not to waste the produce and to try and get different nutrients into my system.  Before this summer, I rarely ate cabbage and never had zucchini, beets, garlic scapes (that is a MUST try!), etc. These are foods that are seriously healthy for you and help to prevent disease, including inflammation processes. Because we are eating more whole foods, the both of us are eating far fewer processed foods. It has only been about five weeks and I think that within time, my husband and I are both going to see a difference in how we feel and look. We are eating healthier meals, cooking more, eating out less, and I am enjoying the creativity that comes from creating new dishes.

If you are trying to eat healthier, I would encourage you to consider joining a CSA in the future. I am very happy that we decided to undergo this adventure and I honestly cannot ever envision a year where we will not do this. Thank you Red Fire Farm and Heather!