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 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 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!

Friday, July 11, 2014

BRCA Results

It has taken me longer to write and post this blog entry than I anticipated. I have been having a lot of trouble the past few weeks with joint pain, mostly in my hands and feet, and it has made time on the keyboard more difficult than I would like. My rheumatologist wants me back on prednisone. I think it is the result of an unusual amount of stress, coupled with my diet being less than stellar (I tend to be a terrible eater when I am upset/stressed, depending on the severity of the situation), and the hormone changes from having my Mirena removed less than two weeks ago. I am giving myself a few days to try and get myself straightened out before jumping on the prednisone bandwagon.

Anyways, I got a call this week from my genetic counselor with my BRCA test results and they were negative! Waiting for the results for almost three weeks was even more difficult than I had imagined. Someone asked me this week why I thought that this particular medical issue was more difficult than so many of the other challenges I have faced medically. I really had to think long and hard about that...

I was able to figure out that it freaked me out so much for a variety of reasons. To start with, someone close to me got a very bad medical diagnosis twenty-four hours before I was BRCA tested. Also, I am a cancer survivor and anything cancer related to me has a tendency to freak me out a bit. Lastly, I KNEW that if I was BRCA positive, I would be going for surgery to have my ovaries removed and most likely, a bilateral mastectomy as well. I would not have had the testing done if I had not already thought that through and made those tentative decisions. So the idea of two major surgeries, in addition to my often precarious health status, panicked me. Just the blood clotting disorder itself was going to be a major issue. All very valid reasons to be concerned.

I am over-the-moon thrilled about this negative result, even if it does still leave some unanswered questions. My mother, who has had ovarian and breast cancer, was never BRCA tested (long story). Now if she is BRCA negative, or even if we don't know her status, there is still a possibility that she is carrying a gene that contributed to her cancer that I was not tested for. The problem is, these non-BRCA genes are not as well understood and neither are the implications of them being positive. If my mother WAS BRCA positive, with me now being negative, then the story has ended. We would know that her cancer was caused my the BRCA gene and I no longer need to worry about this issue. Keep in mind that there still remains the possibility of her cancers NOT being genetically linked either.

Confusing as hell, isn't it?
You should hear me trying to explain this to my mother!

I had this discussion with my mom and we decided that, especially now that I am negative, she will consider gene testing. My genetic counselor suggested that she explain everything to her doctor, and consider other gene testing besides BRCA depending on whether it is covered by her insurance and if she wants to do it. Typically, the person with cancer undergoes genetic testing first. We did things a bit backwards, but it is what worked at the time for the both of us. There is a big difference in my mother getting tested now, knowing that there is no way she passed this BRCA gene down to me.

She is going to follow-up with her doctor in the fall when she has another appointment, but for me, I am done with all of this for now. The genetic counselor I met with does not feel that there is a strong possibility for any of these other genes; at least that is the impression that I got and I am not willing to shell out $4000 or so (my $2500 BRCA test was covered by the lab) to find out about these other genes when they are so poorly understood, and when I don't have all the information yet from my mother. I am still planning on following up with the oncologist because it has been pointed out to me that with my mom's history and with my chest radiation history, more should be done with breast surveillance, especially in regards to breast MRIs. I will also discuss with him the value of having ultrasounds and blood tests (CA-125) done for ovarian cancer.

I have learned a lot from this entire process. While I was waiting for my BRCA results, I got connected online with some women who are BRCA positive, and some women who have had the two surgeries. They were a wealth of information and I am in awe of the strength of the human spirit after what all these women are going through and will continue to go through.

For me, I am grateful that even though I am on a difficult medical journey every single day, that this piece will not be a part of that journey. My husband and I had not even made any plans for a few things we wanted to do this year and next, until we knew what the outcome was going to be. I now don't have to worry about not being able to work my new job, once school restarts in the fall. I can breathe a little easier and be more appreciative for this blessing that I have been given.

Wednesday, July 2, 2014

Birth Control, Mirena, and Me

Sometimes a topic comes up that I am somewhat uncomfortable throwing out into the world wide web community, and this is one of them. However, I had to go in for a minor office procedure two days ago and I was extremely nervous about what to expect. A Google search of some other blogs gave me information that helped me quite a bit, and reminded me of the importance of blogging and why I write what I write.

On Monday, the very same day that the Supreme Court of the United States of America granted a for-profit company permission to withhold financial coverage for certain types of birth control from its female employees (including IUDs), I had my IUD removed.

That was a total coincidence.

Here's the thing though. This blog is not about that decision because honestly, I want this blog entry to be more helpful than that. We all have our opinions about the case and trust me, mine is strong. But this blog is about women and the choices they make. The choices that impact their lives, their partner's lives, and the children they may or may not have. So here is my story...

During my college years, I was put on birth control pills after I suffered through a ruptured ovarian cyst. It was not my first cyst and because of the rupture, I lost critical days of clinical experience during nursing school. Once I went on the pill, the cyst situation improved dramatically. I was not sexually active at the time I went on the pill, and never had been at that point. However once I was, I found the birth control pill to be a great piece of mind, as condoms are not exactly known to be foolproof.

I tried different types of birth control pills over the years as I had suffered from the side effects that many women deal with in the name of acting responsible. I stayed on it for years and years until I came off of it during my first marriage for a brief, and I mean VERY brief, attempt at becoming pregnant. I was back on it two months later. That's a story for another day.

In 2004, while in this marriage, I experienced a blood clot in my leg. I underwent testing and was found to have a genetic clotting disorder called Factor V Leiden. At the time I developed the blood clot, I was dealing with a medical issue and was spending a lot of time in bed. The hormones in the pill were thought to be an aggravating factor in the development of the blood clot. The trifecta of the Factor V Leiden, being immobile, and the hormones in the pill almost caused me a death sentence. I was banned from birth control pills for the rest of my life, as well as all hormonal forms of birth control such as DepoProvera, etc.

So condoms it was.
That was fun.

Years went on and in 2008, I left and subsequently divorced my husband. At this time I was also dealing with a raging autoimmune disorder that left me disabled and I felt strongly that I needed to further push the birth control issue as being single, relying on condoms if I were to have a new partner, and having this many health issues was a very bad combination. And frankly, irresponsible as well. The issue was made more complex by the fact that my fertility was in question anyways due to Polycystic Ovarian Syndrome, so who even knows if I needed birth control. But since I hadn't undergone testing fertility testing, I was playing it safe.

I spoke with my hematologist and gynecologist at length and I was presented with the option to have an IUD. I had two choices: a copper Paraguard IUD or a hormonal Mirena IUD. The suggestion was made that the Mirena might be better for me as the ParaGuard was known for causing heavier periods and I already battled that most of my life, but the Mirena can also cause ovarian cysts. I questioned the use of hormone (progestin) in the Mirena due to my clotting disorder. It was explained to me that because of the type of hormone and the location of the hormone in the uterus, rather than in my entire system, that it would not be an issue. The Mirena IUD had become the birth control method recommended to women with Factor V Leiden, as studies had shown that it did not cause an increased incidence of blood clots.

So in August 2009, I had the IUD placed. I was not thrilled about the idea of having something foreign put into my body, by my options were so limited. I was forewarned that insertion can be more difficult for women who have never been pregnant/given birth, but this was something I read online. I figured maybe some women exaggerated how bad the pain was. My (male) gynecologist at the time said it would just be like period cramps.

I no longer see that doctor.

It was bad.
Very bad.

I have never given birth, but I would have to say that the pain was probably comparable, just much shorter in duration. I have been through a lot of medical procedures, many of them unpleasant, and this ranks in the top three of most painful procedures. Then there was a lot of dizziness, I threw up while on the table, and my doctor told me I would be OK to drive home. I got twenty minutes into my drive and had to pull over because I thought I was going to pass out from the pain. I eventually made the last ten minutes of the drive home and loaded up on Percocet that I had left over from an ER visit months before.

The severe pain continued for two straight weeks and that was how long I was on Percocet. It took about two full months for me to get back to normal and then I was fine. I had called the doctor several times during this period because I was concerned that something was wrong with the IUD, but I was told that it just doesn't agree with my body and that it will get better, which it did. I don't want to scare women out of getting an IUD, but let me tell you, knowledge is power, Be prepared and don't take the word of a male physician on how it feels to have a T-shaped object inserted into your uterus when nothing else has ever been placed in your uterus before. Ask for a medication to take beforehand and have someone drive you. My experience may not be typical, but better safe than sorry.

Life after that with the IUD was OK for the most part. I would get paranoid that I couldn't find the strings which indicated if the IUD was in place. I did get a few cysts over the years, which I probably would have gotten anyways. My periods ceased. I never had to buy tampons. And when I entered my first post-divorce relationship, I was relieved to have it. At one point I was taking a very toxic autoimmune medication with a black box warning and was told that I could not risk, under any circumstances, getting pregnant. No problem. IUD in place.

As I mentioned, I was never really comfortable with the idea of having a device in me like that and this became more of an issue for me after a conversation with my acupuncturist when I started seeing him the first time around. The menstrual cycle is a big component in Chinese medicine, especially in relation to blood flow and energy. He never pushed me on the issue, because he is such a good practitioner, but he suggested I consider having it removed so that the work I was doing in acupuncture could be more effective for my autoimmune symptoms. Again, my options were limited, so in place it stayed.

Fast forward to 2013. I begin to have a lot of problems with my cycle.The Mirena has now been in place for almost four years. I originally thought it was stress related due to our wedding, but by the end of the year, the wedding was done and the cycles worsened. I spoke to my nurse practitioner, who I trust implicitly, and she told me since my Mirena was due to come out in August 2014, the symptoms were likely related to the fluctuations of hormones that the Mirena was producing.

I go from never having a period to having several a month. YES, SEVERAL A MONTH! Two words for that: raging bitch. Actually, that would be a bit extreme, but the hormone fluctuations were causing bad mood swings (mostly depression), bloating, cramping, you know, the usual. Plus, this made me concerned about the Mirena's efficacy. If the hormone levels in the Mirena were changing that much to cause these symptoms, was there enough progestin in that sucker to do what it is supposed to do? I am 43 years old and I have several medical issues that would likely make a pregnancy life-threatening for me, not to mention threatening to an unborn child.

So this has left my husband and I with lots to talk about. The plan was to get through my BRCA testing because if that ended up being positive, I knew I would have my ovaries removed and it would be a resolved issue. I have not received those results and birth control is still an open discussion. However we both agreed that for right here, right now, it is not physically OK for me to have this current IUD in place, especially since the more hormone fluctuations I have, the worse my autoimmune symptoms get.

For women, especially women with health complications like me, there are no easy answers. However I am fortunate enough to have a supportive husband and an excellent health care practitioner. Yesterday, after days of major fear and anxiety, I had the IUD removed. This was the Google topic I was referring to at the beginning of this post. I was petrified to have this thing taken out after my harrowing insertion experience. But it went OK. I thought to take some pain medication AND Motrin beforehand. It was painful coming out (they are taking something out of your uterus after all), but it was so quick that I barely had time to react. I did have cramping on the way home and Motrin later on in the evening, but by the next morning, I was out for a run.

The aftermath of the removal has been as expected. My body and hormones have been altered for the past five years so all those periods I didn't get the first four years? Yeah, they were getting saved up for now apparently. It sucks, but I am confident that in a few weeks or months, it will all even out. I'm sure my acupuncturist will be thrilled when I go in tomorrow and I am confident that she can do something to help get me through the next few weeks.

So with all this talk about women's rights, court decisions, and birth control, at the same time that I have gone through this process this week, it has made me think about the Mirena and if I think it is a good form of birth control. If you Google search "Mirena complications", you will be blown away by the lawsuits and issues that women have had with this form of contraception. You will see stories of women who love it. You will even read about how evangelical Christians think that using an IUD is abortion (for the record, based on the evidence, I do not). I will be honest, I LOVE the fact that this foreign piece of material is no longer in my body. I am even psyched that I have to go buy tampons for the first time in God knows how long, because it means that my body is doing what it is supposed to do. Even though I had the IUD placed AFTER I first experienced autoimmune symptoms, I am curious to see if anything with my health improves.

For a period of time, for me, the Mirena was the right choice. Besides never having sex, it was the only choice. I think it is easy for all of us to sit in judgment over each other and the choices we make, but we truly know little about the fine details and the decision making process that a woman must go through in regards to her health.

It is, after all, her body.