Monday, December 1, 2014

Accepting Sjögren's

I wasn't planning on doing any writing today but to be honest, I need to write. Actually, there are many times that I need to write. I cannot even tell you how many times I come to this blog to write about how I am feeling regarding living with this illness and instead of blogging, I close down my computer and walk away.


Because I feel like I don't have anything positive to say.

And it has come to my attention lately that this is probably not the healthiest way to deal with the psychological impact of having a chronic illness. Of course, I already knew that fact, but I never seemed to think that it applied to me. I thought that the best way for me to get through day after day with this heavy burden that is called Sjögren's syndrome, was to stay upbeat and positive.

Put on a smile.
Be grateful for what you have.
Make the best out of a lousy situation.
Hell, write a book about it even!

And you know what? I DO believe that keeping a positive attitude is a key element to living well with chronic illness, no doubt about that. However, I now realize that in my efforts to keep myself from getting down and out, I have placed this unrealistic expectation on myself that I need to be upbeat and positive all the time when dealing with others, especially in my writing. I try very hard not to complain whether it is online on social media, or with my friends and family. And I think that is a disservice to us all.

The exceptions to this are my husband, my parents, and my brother. They get the real deal, 24/7. Why? Because they are "safe". I don't worry that they will judge me, end a friendship with me, or realize that being in a friendship/relationship with someone like me can be really hard at times. It is not for the weak or for those who cannot handle the unpredictability of what this illness brings. They see me at my worst and love me anyways.

But, living like that is exhausting.
And I cannot keep it up.

I am here to tell you that Sjögren's syndrome sucks. It is this pervasive and debilitating illness that NEVER gives you a day off. Every single morning I wake up knowing that at the age of 43, I am never going to have a day again where I am completely healthy. It will never go away. It will follow me every single moment of every single day until the day I die. And hopefully, that will be because of old age, and not because of Sjögren's complications.

That is not a negative attitude.
That is called acceptance.

Acceptance is what frees you. It is acknowledging the reality of the situation while at the same time, making a plan to live as wholly and completely as you can, despite it all. It is knowing that you can do anything you set your mind to while at the same time knowing that doing some things are not worth the price you will pay in the end.

Acceptance is being your genuine self. Not pretending to be fine when you are not. Knowing the value of letting people see how things really are. How exhausted you are or how much pain you are in. How discouraged you are when you spend half of your work week in doctor's appointments.

Acceptance is having and using the ability to say "no" to people and requests, especially the ones that come from people who don't try to understand, or maybe don't even care about, your limitations or restrictions. Maybe its saying no to a trip that you know will be difficult or a stressful situation that may exacerbate your symptoms.

So I am going to work on acceptance and I will forewarn you, it probably will not be pretty at times. It will involve being more honest and I'm sure, using more swear words because that is just what I do. I am aiming for progress, and not perfection.  Maybe you can too...

Wednesday, November 26, 2014

Low Dose Naltrexone Update

I wish I had time today to do a much longer post on this, but it is the day before Thanksgiving and this is the year I permanently take over the Thanksgiving dinner from my mother. So, my husband and I are hosting tomorrow and it will be our first holiday celebration with some members from both sides of our family here for dinner. Lots of work to do. I am fortunate that my husband is a great cook so he does the turkey, peels the potatoes, and I do the other sides...

I noticed though that my low dose naltrexone (LDN) blog entries are getting a LOT of traffic over the past month or so and it appears that people are looking for information on it, especially in regards to Sjögren's syndrome, so here is my update:

I was on 1mg of LDN for a month. I will be honest, I have been feeling like better word to describe it. I don't think it was related to the LDN, but related to the fact that I am no longer on prednisone or any other autoimmune meds except Plaquenil. I feel that the Plaquenil does nothing for me. I did find out that my TSH levels are the highest they have been in years, which probably also accounts for the overwhelming fatigue. I was also having more joint pain, plantar fasciitis pain, and muscle pain. However we cannot increase my thyroid medicine while I am titrating up on the LDN because as the LDN dose is increased, I will likely require less and less thyroid hormone. My endocrinologist does not want me to swing rapidly the other way.

I increased my LDN dosage about ten days ago to 2 mg and the past few days, I have felt much better. Except for the days I work at my school nurse job, I am getting through many of my days again without a nap or lying down and my energy is better. My joint, muscle, and plantar fasciitis pain has lessened and overall, I feel like I am one again headed in the right direction.

I am struggling some with my sleep, more so than on the 1mg. However it is not as severe as in the past. I wake up several times during the night, but then fall right back asleep. Overall, I feel rested. I am working on experimenting with different dosages of my sleep supplements and I am hoping to find the right combination so that I can continue to increase the LDN.

I will continue to  post updates as things change. Wishing you all a most wonderful Thanksgiving!

Monday, November 10, 2014

Loving Molly

I was at a dinner party with a group of friends last evening and one particular couple and I were discussing the topic of our dogs. After years and years of love and devotion, they recently had to put down their fourteen year old beloved pet this past year and in exchanging stories about pets, I found myself sharing my story about Molly. They had read anecdotes and seen pictures of her on Facebook, but didn't know some of the details of my trials and tribulations with Molly, my thirteen year old basset hound and black lab mix.

I was scrolling through my blog today and I realized that I don't write about Molly much here. I did write about her back in 2010 when we went through a horrible medical experience together. One which resulted in me having to make a decision about whether to put her down, or spend $5,000 on a surgery that looked promising in some aspects, but held no promises for either of us in terms of her quality of life. A story I am happy to say, had a happy ending of a full recovery for Molly.

I was thinking this morning about that difficult time I went through with Molly and realized that I understood why, despite the fact that I talk about her all the time with my family and friends, I never write about her...

Because I don't need to.

Because a lot of the time, writing is therapeutic for me and my connection to this dog is so pure, and so untouched by the unsavory elements that normally affect personal relationships, that there is no need to process my feelings about her. There is no fighting, no misunderstandings, no hurt feelings, no family drama, no unfulfilled expectations.

Just love.

And a mean, pure love.

I never had children of my own. That's a long story in itself for another day. I saw a posting recently on Facebook, not from anyone in my family, or close friend circle luckily, in which several comments were made in response to a woman (without any children) who said that her dogs are like her children. The responses went on and on about how a dog, or any pet, is nothing like having a child and that people need to stop comparing being a pet owner with being a parent. I have read stuff like this before in articles and such, but this particular thread really got to me.

To begin with, Molly is like a child to me. Yes, I am completely sane and as a pediatric nurse, a stepmother to adult children, and a person who has a million friends with children, I do understand it is different. I understand that while my dog fulfills many of the same desires and needs that a child fulfills for a parent, it is not quite the same thing and having Molly as a pet, no matter how much I love and care for her, will never fulfill the loss I feel from not having a child.

I also understand that this dog and I have traveled through life together for ten years together and I would guess that most people in my life could never fully comprehend what we have been through together: losing half of our former family, our home, the nights we have spent alone together on the couch...

The time where I didn't think I could care for her anymore and had the phone number in my hand for a basset hound rescue...

The Christmas Eve I stayed up all night with her when she was in agony...

The nights she stayed up with me when I was in agony...

The blizzard I drove two hours in to get her to an emergency room when she became paralyzed...

The night I stayed up trying to make a decision about whether she would be better off being put down or having a surgery that I could not afford...

The moment I saw her walk towards me several days after that surgery...

These are just a few examples of the journey we have been on in the past ten years. She has taught me the meaning of unconditional love. Isn't unconditional love what being a parent is about? Some of the comments in response to that post I mentioned above stated that until you become a parent, you cannot know what that kind of love is like. I disagree. I think as a person who has never had a child of her own, yes, I do not know what it is like to raise a child. But that does not mean that I do not know how to love unconditionally and without reservation. It concerns me greatly that as a society, we judge each other on how we love. Or that we condemn each other on the love that we do have for all living creatures.

I rescued Molly from a shelter in 2004. She has been rescuing me ever since. At the age of 13, I know our time together is limited and will come to an end much sooner than I would like. She takes medication to manage her thyroid, her stomach, and the resulting arthritis pain from her 2010 surgery. She moves slower at times and is not the spry young thing she once was. However she still has a good quality of life and so we continue on. And the thought of her being gone forever scares me. But for now, I will love her. I will care for her. I will take advantage of every single day that we have left together. I will let her love me. And when the time comes, no matter how difficult it will be, I will be by her side when she is ushered to the other side.

Because that is love.

Friday, November 7, 2014

Revisiting Low-Dose Naltrexone (LDN)

"LDN may well be the most therapeutic breakthrough in over 50 years. It provides a new method of medical treatment by mobilizing the natural defenses of one's own immune system." ~ David Gluck

I have previously posted at least twice about my trials with a little-known medication called low-dose naltrexone, LDN for short. You can read those previous entries HERE and HERE.

However I have decided that it is worthy of another post, because I am about three weeks into my third trial with it and I have recently learned more about the medication.

Naltrexone is a prescription medication that has historically been used in larger doses to treat alcohol dependence and opioid addictions. Since the 1980's, some doctors have discovered that it can be used in smaller doses, hence the name LOW-dose naltrexone, to successfully treat some chronic illnesses, specifically autoimmune diseases, cancer, HIV, fibromyalgia, etc. It accomplishes this by regulating cell growth and slowing down cell proliferation. For autoimmune diseases, this cell regulation results in the immune system being reset.

LDN, at doses of 1.5-4.5mg per day, works by blocking the opioid receptors in your body for approximately four hours. The body is tricked into thinking it is not producing endorphins, specifically those called Opioid Growth Factor (OGF). The body then compensates for this by increasing production of these opioids and their receptors, producing a rebound effect.

LDN was first introduced to me in early 2013 by my integrative medicine practitioner. It has successfully been used to treat Multiple Sclerosis and Crohn's Disease in some individuals. My practitioner thought that it may be of use in Sjögren's syndrome. The problem is not many people have heard of it and there haven't been many studies done on its positive effects; although there were a few studies done with Multiple Sclerosis and Crohn's patients which showed its benefits. LDN is a very inexpensive drug and is already available as a generic preparation, so of course research studies do not get big funding from the pharmaceutical companies and the drug remains underutilized. There are some grass roots groups that have been trying to get the word out there and that is the primary reason why I decided to do another blog entry about it.

So you are probably wondering why I am trying this medication for the third time. I have actually had some good success with it, however the side effect of insomnia has been enough of a problem that it has caused me to go off of it during one of the trials. Also, the last time I was on it, I was admitted into the hospital and put on narcotic pain medication for an issue that had nothing to do with the LDN. You CANNOT take LDN while you are taking narcotic pain medications. The only possible exception to this is Tramadol which I have been able to take, only on occasion, and I try to space it four hours apart from my LDN dose.

LDN is a compounded medication. I get mine compounded by Skip's Pharmacy in Boca Raton, Florida and it is shipped to my house. They also do a vegetarian capsule which is dairy-free. The owner, Skip Lenz, is a pharmacist who is considered an expert on the use of LDN and he is a very valuable resource. This is not a medication that all pharmacies know how to prepare in terms of fillers, etc. so do your homework on this. And do NOT get it in a slow-release form. The total cost, with shipping, runs me somewhere between $22-$28/month. Insurance does not cover it, but that is cheaper than many of my insurance co-pays.

Ideally, you should work with your doctor in regards to using LDN. But, if you want to try LDN and cannot get a doctor to prescribe it for you, you may contact Crystal Nason by email at this address: Put LDN Prescribing Doctor in the subject line and tell her where you live. She has an extensive list of doctors who prescribe LDN and I have heard she is an excellent resource for this.

I am seeing a different integrative medicine practitioner now and we talked about trying the LDN again, but this time, by starting at a much lower dose and slowly increasing it to see if I can tolerate it. The previous two times, I started at 3mg I believe. This time around, I am starting at 1 mg. I am probably going to stick with that dose for another month or so. It has affected my sleep some already, but not to the extent it did before. Oftentimes the insomnia improves over time. Typically, people say that LDN should be taking between 9pm-3am so that it works on the endorphin receptors during their peak time, which is between 2-4am. This is probably the most debated topic regarding LDN...when to take it. Other experts on the topic feel that because of the mechanism of how it works, you can take it at any time of day. Because I have already started with some insomnia (I fall asleep fine, but wake up around 1 am for a while and feel wired), I am trying it in the morning. It's too soon to tell yet if that is helping my sleep as I have had some other issues affecting my sleep this week.

What I have noticed just from being on this small dose is that my typical low level anxiety that I get from time to time is gone and in general, I feel more on an even keel. My energy level has also improved a little during the day. In the past, when on higher doses, I have seen a dramatic improvement in my pain levels and energy. And that is exactly why I am working so hard to get LDN to work for me.

The thing about LDN is this: besides the insomnia and vivid dreams, there is minimal risk and side effects to taking it. OK, you have to deal with the narcotics issue but besides that, it is a relatively convenient medication to take. No life-altering side effects like all the immunosuppressants that get thrown at us; osteoporosis, diabetes, cataracts, cancer, the list goes on and on. If you are being treated for a thyroid disorder, you need to more closely monitor your thyroid levels because as LDN regulates your immune system, your TSH levels can fluctuate  and you may need a thyroid medication adjustment. And finally, as we know, not all medications work successfully for everybody.

Because the research is limited and its not well known as a treatment for autoimmune illness in traditional western medicine, there are a lot of unknowns about the medication at this low dose, the dose timing thing being a perfect example. So if you decide to try it, you are going to have to listen to your body, do your research, and find what dose and timing works best for your body and particular illness. Don't give up on it. There are plenty of non-prescription sleep supplements to help with the insomnia if you should need it and I believe that LDN is well worth the effort. While I don't think it is a miracle cure, I do think it can be an important component of the treatment plan.

Thursday, November 6, 2014

Plaquenil and Retinal Toxicity

I will be honest; I consider myself a very well-informed and educated person in regards to my illness. I have often joked that I know more about Sjögren's syndrome than most primary care doctors, and possibly more than most non-rheumatologists. My very rocky road with this illness, coupled with an innate desire for knowledge, learning and empowerment, is the foundation for being an expert patient.

However this pretty much all went to hell during my last opthalmology appointment. For a variety of reasons, I made the very scary and drastic move of leaving my rheumatologist in CT and started seeing one at Massachusetts General Hospital in Boston. It ended up being a smart move. This new rheumatologist then referred me for for two consults, one of which being to Massachusetts Eye and Ear Infirmary in Boston to see an opthalmologist who specializes in ocular immunology and ocular inflammatory disorders. Basically a fancy way of saying that he deals all the time with people who have Sjögren's syndrome.

Despite the four hours of travel it would take me to get to Mass. Eye and Ear, I was more than OK with going for this consult. I felt like I didn't have the best rapport with my current eye doctor and he was not offering me much in the way of effective treatments. I figured a new perspective would be good.

Again, another smart move. To start with, I immediately felt comfortable talking to him. However I found out some information about my eye condition that despite seeing two different eye doctors over the past six years, I was unaware of.

I have been taking the medication, Plaquenil, since early 2008 for Sjögren's syndrome. It is a medication commonly used by doctors to help treat a variety of autoimmune illnesses, despite the fact it was originally marketed as an antimalarial drug. It modulates the immune system, without all the harmful side effects that can result from immunosuppressants. The one catch is that it can cause something called retinal toxicity, which is a condition which leads to vision loss and can result in blindness.

When I started Plaquenil all those years ago, I was told about the possibility of the retinal toxicity. I was also told that it almost never happens and the risk is somewhere around less than 1%. It seemed to me that the possible benefits far outweighed that tiny risk. However through the years, it didn't seem to me that Plaquenil did a lot for me in regards to my Sjögren's symptoms. It's hard to know though since I have almost always been on it.

So when I saw this new eye doctor, he asked me several questions about my dose, how long I have been on it, etc. Then he told me that once you are on Plaquenil for greater than five years, your risk for retinal toxicity greatly increases, to about 10%.

10% ?!?

Now, that may not seem like a big number to you, but if someone told you you have a 1 in 10 chance of developing a condition that would affect your sight, especially with a medication that you are not sure makes all that much of a difference, trust me, you would look at things differently.

I will be honest, I was really ticked off...not at him. But for never being told about this. I have been making medication decisions without all the facts and therefore, making an uninformed decision. One that could have significant consequences.

He also went on to explain that the risk of retinal toxicity is affected not only by the amount of years on the drug, but by the dose, your weight, and your height. Toxicity is impacted by the cumulative dose of Plaquenil that you have taken in your lifetime. He also went on to explain that the every six month vision field tests I have been undergoing by my previous doctor are not the sole current recommendation for retinal toxicity screening.


While the vision field tests can be helpful and used to be the gold standard of screening for toxicity, it was found that by the time something abnormal showed up on the vision field test, the damage has already been done. And even if you stop taking the Plaquenil that day, the damage can continue to occur even while off the Plaquenil. Also, most patients don't notice symptoms on their own in the early stages of toxicity, which contributes to the problem.

Rather, there is a test called a SD-OCT test. It stands for Spectral-Domain Optical Coherence Tomagraphy and according to my doctor, it is more reliable in detecting early changes in the retina. According to some of the research, the ideal screening is to do SD-OCT testing along with visual field testing. You can read more about the updates 2011 screening guidelines HERE.

My point in writing all this up is not to scare anyone about Plaquenil. I know a lot of people who take it and a lot of people who have had great success with it and never want to live without it because it has helped their symptoms that much. But rather, my point is to inform you so that you are not in the situation I was in of being uninformed and making medical decisions when you do not have all the facts. Read. Learn. And educate yourself!

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.

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.

Saturday, June 21, 2014

BRCA and Genetic Testing

What would you do if you had an opportunity to learn a piece of medical information about yourself that years ago, was not even an option? What if that information told you that in your lifetime, you had a high likelihood, or even a possibility, or having a certain type(s) of cancer? And finally, what if knowing that information required that you make life-altering decisions about what to physically do with your body?

This is the case for many women who are faced with the question of whether or not to undergo BRCA testing. The BRCA 1 and BRCA 2 genes are genes that we are all born with. If there is a mutation in either one of these genes, it indicates a condition called Hereditary Breast and Ovarian Cancer (HBOC) syndrome. This is a condition that is genetic and is acquired through birth, when the mutation is passed down from either parent; it does NOT have to come from the mother. If a person tests positive for this mutation, it substantially increases their risk for breast cancer, ovarian cancer, and in certain families, pancreatic cancer. Males with the mutation are at a higher risk for male breast cancer and prostate cancer.

Now, only about 5-10% of cancers are genetically related, however I have a mother who was diagnosed with Stage 2 ovarian cancer at age 44 and then breast cancer at age 62. She had an aunt who had breast cancer. Genetically related cancers tend to be diagnosed at a younger age, under the age of 50. We know that mammograms and self breast exams are very useful in detecting breast cancer, but ovarian cancer has been called the "silent killer" because it often does not produce symptoms until the disease has progressed. My mother was lucky; she went to her annual exam, was found to have what was thought to be problematic fibroids, and subsequently underwent surgery for those fibroids.

Except, they were not fibroids. They were tumors. She proceeded to have a total hysterectomy at the age of 44. She survived that, with surgery and chemotherapy, and then also survived her breast cancer diagnosis, which was treated with a lumpectomy and radiation.

When I was in my late 20's, my oncologist (I had Hodgkin's Lymphoma when I was 24) suggested genetic testing/counseling for the BRCA gene. I went to the counseling, had the crap scared out of me, and decided not to have the testing at the time. I didn't want to know that kind of information (the statistics for BRCA positive women are staggering), and I knew that if I tested positive, I would not have the recommended surgery because I wanted to have children. The recommended surgery for BRCA positive women is to have the ovaries removed. Total mastectomy for the breasts. The option to surgery is increased surveillance of the breast with mammograms and MRI's every six months. For the ovaries, there is no proven detection method, although sometimes a blood test and ultrasound can help.

Down the road, I was in my late 30's when my mom was diagnosed with breast cancer. I clearly remember her oncologist looking me straight in the eye and telling me I should have the BRCA testing done because of my risk. It still was not the right time.

Now I am 43 years old. And this risk for ovarian cancer thing has been weighing heavy on my mind since last year, probably because I am almost at the age my mom was when she was diagnosed. Actually, it has been on my mind since that first genetic counseling appointment all those years ago. Although I have been getting regular mammograms for quite some time now, due to my chest radiation history because of the Hodgkin's, there is no reliable testing for ovarian cancer, with the CA-125 blood test and transvaginal ultrasounds being hit or miss at best.

So all of this brought me to my regular gynecologist who then referred me to a local oncologist and finally an appointment was set up with a genetic counselor from Massachusetts General Hospital (MGH). My oncologist is located at Cooley Dickinson Hospital in Northampton, MA, which is a small community hospital, and they are affiliated with MGH, which has a comprehensive genetic program. I had to wait months for the appointment and then I got an unexpected call two weeks ago that there was a cancellation last week, which moved my appointment up by a full month. I took it.

My husband went with me to the appointment last Thursday and we met with my genetic counselor, Michelle. She was absolutely fantastic. She took a detailed family history and confirmed that yes, having BRCA testing done was indicated. What I didn't expect her to say was that there were other genes I should probably consider testing for as well, including the p53 gene and the p16 gene. Folks, I will be honest. I am a nurse and I didn't even know there WERE other genes! The p53 gene was because of the history of leukemia/lymphoma in my family. I have already had lymphoma, but I would know if I was then also susceptible to sarcoma, breast cancer, brain tumors, and about six other cancers.

The p16 gene was suggested because my dad has had melanoma and my uncle (his brother) died of pancreatic cancer, both of which can be correlated to this gene mutation. Here's the problem though, if you find out you DO have these other two genes, there's not much you can do about it, except that you are aware of it and your doctors can be more alert to changes with you. Some doctors will suggest routine endoscopic ultrasounds and MRI's for the pancreatic cancer and skin checks by a dermatologist for melanoma, but it's not like you can remove your pancreas or anything. These two tests would be included in  what is called a multi-gene cancer panel, which tests for all the genes known to have a cancer connection.

Cost: $5000
And my insurance, Medicare, does not cover ANY genetic testing for me because it is considered preventative.

Michelle also told us that this gene testing list is constantly changing as new genes are being discovered. She did not seem to feel that the risk for me with all these other genes was high. I did not feel that at this time, it was information I wanted. Yes, I wanted to know my BRCA status, mostly because of the higher risk, but also because I can concretely do something about if it comes back positive. She also told me I didn't have to decide that day; the option would always be there if I changed my mind. On that day, it was too much, both emotionally and financially, and I opted out.

The good news is, there used to only be one lab that ran these BRCA tests, Myriad. Michelle told us that they no longer are the sole owners of the patent, and that other labs are now doing the testing as well. The cost for us, as it would not be covered by my insurance, would be $2500. However because these labs are now in competition with each other and want your business, they will oftentimes run it for free for a person if not covered by insurance, minus $100. That decision will be made probably within the next week. They will start running the test, and if for some reason are not going to cover the cost, they are mandated to call me and ask me if I want them to continue running the test (which we have decided will happen) as a self-pay, or stop the test. If they are NOT going to cover it and do not notify me by phone, they must pay the cost of the test. Michelle felt that most likely, it would be covered, so now we wait to see if the phone rings...

While talking with Michelle, I almost changed my mind even about the BRCA testing. It is quite a complicated thing, this BRCA business. For example, for her own personal reasons, my mother has decided NOT to get tested, so we don't know her status. If I end up being positive, it looks likely that is came from that side of the family because of her cancers, but we don't know for certain. If I come back negative, it doesn't mean our family does not have the BRCA gene, because I could have gotten lucky and been in the 50% that don't inherit it.

Here's the part that almost changed my mind: If I come back positive, it means that we now know BRCA runs in our family. This means that my parents, brother, aunts, uncles, and cousins on the side of the family it came from, ALL have a 50% chance of inheriting this faulty gene.

When this dawned on me, I clarified this with Michelle, looked at Chuck, and we both realized the same thing, at the same moment: my getting BRCA testing with a positive result would mean that all my family members would have this knowledge, whether they wanted it or not.

I have to say, that was one of the worst feelings in the world, ever. And of course, I started to cry.
This is the type of thing that can really mess with your head.

As we talked more with Michelle, I began to realize that this is not my fault. It is not my mother's fault. It is not her parent''s fault. It is NOBODY'S fault! This gene has been around forever, literally. Yes, now we have the technology to know these things and be more proactive which raises up the question of how much knowledge is too much?

I came to the conclusion during this appointment that for me, I need to have this BRCA information, not just on an emotional level, but for the sake of my survival. It is not very common for a woman, like my mother, to get ovarian AND breast cancer in her lifetime, especially at a younger age. The general population has approximately a 1-2% risk of getting ovarian cancer in their lifetime. A person who is BRCA positive has up to a 60% chance of ovarian cancer...a cancer that is typically detected AFTER it is too late. The general population has approximately a 10% chance of breast cancer in their lifetime. My previous radiation history already increases that risk. A woman who is BRCA positive has up to an 87% risk. Those are numbers that I cannot ignore, especially after having already faced cancer once in my lifetime.

The questions that BRCA presents are complicated and messy with no right or wrong answers. The only answers are the ones that are right for the individual, at that particular time in their life. So the best we can do, is get educated, make informed decisions, and pray for the best outcome.