Monday, February 29, 2016

The Manifestation Workshop: On Being Human


"If you knew who walked beside you at all times, on the path that you have chosen, you could never experience fear or doubt again." ~ Wayne Dyer


Photo courtesy of Jennifer Pastiloff


Do you see that photograph above? I didn't take it, which is obvious because I am the one in the purple shirt right in the middle, but it is one of my all-time favorite photos. It was taken during a retreat I went to in February. To me, this photograph screams support and strength. 

It screams empowerment. 
It screams love.

I waited almost a year and a half to attend this retreat. It was a Jennifer Pastiloff Manifestation Workshop called On Being Human. I first heard about Jen through my dear friend, Tina. A while ago, Tina knew I was looking to submit some of my writing and she thought that Jen's literary site, The Manifest-Station, would be a good fit for my writing. You can check out the site HERE. So I submitted an essay, it was published, and I started following Jen's site.

Tina had gone to the On Being Human workshop last year and she couldn't say enough about it. I guess the best way to describe the workshop is that it is a weekend filled with yoga, writing exercises, music, and self-exploration. It's about empowerment and connection. When I was considering attending this year's workshop, I was a little (OK, maybe more than a little) concerned about how I was going to manage the yoga part. However, Jen and Tina both assured me that the yoga is NOT the focus of the workshop. Rather, it is a vehicle Jen uses to help the attendees dig deeper into the self-exploration and writing parts of the workshop.

Even if you stop reading right now, please hear me when I say this: if you can get to one of her workshops, GO!! PLEASE DO NOT LET THE YOGA PART SCARE YOU OFF! I do have some gentle yoga experience, but I know several people in the workshop who had never done yoga, and they were just fine! You can check out Jen's upcoming workshops HERE.

So, I took a huge leap of faith and decided to go for it.

Honestly, one of the best decisions of my entire life.

And one of the best weekends of my entire life.

No exaggeration.

Despite the fact that I have discussed in depth what transpired over my retreat weekend with a few people, it has been a struggle for me to get it all down in writing. Sometimes experiences are so big and significant in our lives, it becomes a challenge to do them justice with the written word. But, I will try to. Not for my benefit really, but for the rest of you who may benefit from my experience.

The retreat was help at Kripalu in Massachusetts. It was also my first time at Kripalu, but I think I am going to save writing about that for a different day. I'm also not going to describe in detail the exact writing and yoga exercises we did. I did not know going into it exactly what was involved and I'm so glad I didn't know. I want the same for you. If you attend a Jen Pastiloff workshop, I would like you to go into it with an open heart and an open mind. I think you will be glad you did.

My experience at the On Being Human weekend retreat also included staying in a large dormitory with approximately twenty other women, almost all of whom were attending the same workshop. This was intentionally planned as a lot of the women knew each other from last year's retreat. This was a VERY difficult decision for me to make. My former insecurities about my health and my body made me self-conscious. Sleep is crucial for me to function. Honestly, I was scared. However in the end, I wanted to share the experience with Tina and financially, it was really the only option as the semi-private and private rooms were MUCH more expensive.

Thank you God I made that decision. Being in the dormitory afforded me the opportunity to socialize and get to know my fellow workshop travelers. We slept in the same room, we ate our meals together and of course, we manifested together in our workshop sessions. All but one were total strangers to me when I got to Kripalu. None are strangers now. As adult women, how often do we get an opportunity like that?

I cannot lie: the workshop experience was intense. Good intense. We had a total of four sessions over the weekend, each lasting between an hour and a half to three hours. I think so anyways. It all went by so fast that I never checked the clock for time. When I was discussing the weekend with my therapist, I told her it was like being in session with her for two and a half straight days, only much more fun. That's not an exact description, but the best I can come up with at the moment.

So what did I experience?

I delved into the very core of my spirit, or maybe soul is a better word. Now I have spent some time in therapy (I think everyone should) and I think of myself as a self-aware person. My writing gives that away every time. But this was different. This was about shredding the layers of insecurity, self-doubt, self-loathing, and fear that I carry around with me every day. And then doing so with complete strangers. It was about tapping into those parts of me that are good....and strong. I learned truths about myself, some of which I already knew, but many of which I did not. Truths that made me so sad; like the lies I tell myself about how I am not smart enough...or pretty enough...or thin enough...

Or just not good enough.

I learned that I do not need to ever apologize for whom I am or the illness I live with every single day. Through this workshop I came to realize that the beliefs and fears I carry with me are all lies. I was aware of some of this through the work I have been doing with a therapist, but the workshop helped me to finally put so many of those pieces together. I didn't even fully realize how much I was berating myself with my own toxic thoughts every day, which is interesting because I have spent the past few years ridding my life of OTHER toxic people. But yet, the MOST toxicity resided in my own head.

I learned that it is not up to other people to recognize my achievements or strengths. Why not? Because I can do that for myself. It doesn't matter whether someone else may think negative thoughts about me or doesn't like me. I didn't realize how much time in my head was spent worrying about that. Time and energy that I can use to do good things in the world and for myself.

So why would this workshop be different than say, therapy? I believe therapy is important. At times, it has saved my life...literally. But this kind of workshop is also about human connection; something that I believe as a society we get further and further away from. During the workshop sessions, you have to share...like in front of all the other people...out loud. When you share some of your deepest fears and insecurities with strangers, they are no longer strangers. They are friends. When you let yourself be THAT vulnerable to other human beings, magical things happen. Seriously magical things.

For me, the self exploration was incredibly helpful, but the sharing and listening to other people's stories and thoughts was epic. People just don't do that in the regular world anymore. And if they do, it is oftentimes stilted. I cried more during this weekend than I have in a long time. Not just for myself, but for others. It was bewildering for me to see and hear how much that we, as women, beat ourselves up, or don't see our own self-worth. I thought I was the only one.

There is something about bearing witness to other's people's pain, struggles, and fears that elicits a response in me ( and in other participants) that I don't typically have on a day to day basis. Empathy maybe? I'm not quite sure. What I do know is that it was such a privilege to bear witness to the struggles of other people. So if you are reading this and you were in the workshop, thank you so much for allowing me to be a part of your journey.

Human connection is probably the most powerful tool we have in our journey through this world. Deep human connection that is. Before last weekend I used to think that many of the thoughts and feelings I had were unique to me, and not in a good way. I thought I was "different." So many times, I have been told that I am "overemotional" or "too sensitive." While I can hold a casual conversation with the best of them, I always crave a deeper connection with people I meet or people already in my life. I am oftentimes disappointed and that led me to believe that I was defective or unusual. At my weekend retreat I realized that not only am I not defective, but I have a gift; that my desire to connect with people on a deeper level, while not for everyone, is not a detriment. I realized that maybe sometimes, it is just a matter of finding the right people to connect with. And letting myself "be seen."

While I know this whole weekend retreat thing sounds like it was serious work, it wasn't at all. I went into the weekend from a not-so-good place. I had previously been struggling physically, I had to resign from a new part-time job in January, and I was depressed in a way that I had not been in a very long time. But the retreat brought a lot of laughter and peace to my heart, as well as a dance party or two. And possibly, some wine. It was like my "joy" switch had been turned back on. Quite a relief for me actually. And even though we are all back home, trying to make our way on our day-to-day lives, we remain connected through our private Facebook group. Thank goodness, because I cannot imagine my world without these beautiful, strong, and courageous women.

I was driving home by myself from the retreat and within ten minutes of my drive home, I knew I was coming home a changed person. Well, maybe changed is not the right word. I was the same person, but a much better version...a more peaceful and confident version. A person who will no longer apologize for who I am and a person who is eliminating the work " should" out of her vocabulary. I truly realized how different I felt when I drove into my driveway and realized that for the entire hour and fifteen minute ride home by myself, I never once turned on the radio. I had no need for the distraction. I was that comfortable being in my own head.

I have now been home for eight days and I have to say, I still have that feel good feeling from my retreat. It doesn't mean that everything goes right all the time. Hell, this blog alone has taken me two days to do because I have been having so many problems with my blog server. But it does mean that I am walking gentler in this world and with more confidence. I don't doubt myself and I put my opinion of myself ahead of all others. It does still take daily work on my part: yoga, meditation, staying connected with my Kripalu sisters, and reinforcing what I have learned, whether that be through reading, mantras and/or writing. It's worth it though. It produces a much more peaceful version of myself.

A happier version.
A version that feels the joy existing in this world.

Thank you Jen Pastiloff and to your assistants, Angela and Melissa, as well. Thank you for finding YOUR path in this world and sharing with us your gifts - a path that brings the rest of us the tools and support we need to do the nitty-gritty work. You are changing this world in a way that not many can do - one person at a time.








Tuesday, February 23, 2016

Guest Post by Christina Griffin: Ehlers-Danlos Syndrome


My story starts many years ago, but I was diagnosed with Primary Sjögren's syndrome at the age of forty-two. I also have Ehlers-Danlos (classical type) as do my daughters. Ehlers-Danos syndrome (EDS) is an inherited connective tissue disorder. Connective tissue is a mixture of proteins and substances that provide strength and elasticity to the structure of your body. When the connective tissue is defective, as in EDS, it becomes difficult to do every day activities.

It all started when I was young. I had a lot of health and pain issues. I had frequent joint pain in elementary school that was brushed off as "growing pains". I remember the knee and massive leg pain. I had kidney reflux, which meant frequent urinary tract infections. At eleven years old, I was diagnosed with scoliosis and close to needing a brace at fourteen years old. I also had a lot of stomach issues which can be related to connective tissue disorders. I also had an injury from when I fell on the ice at age twelve. I'm not sure if that was related to EDS or not. I had to sit on a doughnut for four weeks, had a lot of trouble walking, and it was the start of many back problems.

As a teen, the knee pain got worse. I was wearing soft braces, which did nothing. I also started rolling my ankles frequently, which resulted in swelling and ankle sprains. I was told by doctors that I was just trying to seek attention. Nobody really knew how much pain I was in at the time. At the age of fifteen, I was in gymnastics. I did a front forward handspring and that was the end of my gymnastics days. I had hurt my back to the point of not being able to walk.

In adulthood, I noticed how often I got bruised for no reason. Scars wouldn't heal. I also couldn't hold Novocaine in my tissues when having dental work. Sometimes it would take up to five shots of Novocaine before I would get even a little numb. I never got completely numb though.

When I had my first child, I suffered a fourth degree tear during labor and also tore into my colon. Now, I have pelvic floor dysfunction, which can also happen as a result of EDS. It can cause severe pain, leaking,and prolapse. At age twenty-four, I dislocated a joint in my foot just by walking in my house and catching my foot on a door jam. It was fully dislocated. I started having more pain, but I got used to it. I went to the emergency room and to my doctor, but nobody caught on that something was wrong or that I had some type of underlying issue.

Finally, when I was forty-two and newly diagnosed with Sjögren's syndrome and fibromyalgia, I was diagnosed with EDS. By then, I was walking with a cane. I used to be able to walk over three miles, but I couldn't walk 1/4 of a mile without my cane at that point. When I learned there were others out there and that they were getting results with physical therapy, I wanted to learn more. Frustrated with my situation, I started working with a physical therapist who was very knowledgeable about EDS and  she worked with many clients who had the disorder. Within six months I was walking again, without a cane, for up to two miles. I have super flexibility in my SI joint, back, and hips. I wear an SI belt to assist in my walking as well as an ankle brace, braces for my bottom thumb joint, and braces for my fingers. All of these help my daily mobility. If I do not wear them, the pain gets worse.

My daughters have also been diagnosed with this disabling condition. Just a month ago, my primary doctor diagnosed my oldest daughter (21) wwith EDS, based on her flexibility, dislocations, and pain. What made her get diagnosed? She was having hip pain that significantly affected her mobility. At one point she had arrived home, got out of her car slowly, felt severe hip pain and the next thing she knew, she woke up on the pavement, outside of her car. She had passed out from the pain. Now she is in physical therapy and is showing signs of improvement.

My younger daughter (19) was diagnosed when I was and has had many painful days, but she has strengthened her muscles and now moves better. She is also on pain medication, which does help. This condition can require heavy duty pain medications just to be able to get through the day.

I am just happy they were diagnosed much younger than I was. At least they can both get treatments and hopefully avoid using canes and wheelchairs for most, if not all, of their lives. They are also aware of the condition for the benefit of their own children.

This disorder almost stole my mobility from me. But I am determined to do whatever it takes in order to keep a relatively decent amount of mobility for myself, for as long as I can. I plan on taking hikes this year and I walk four times a week, all braced up. I don't do anything that will be strenuous on my joints (including yoga) and I avoid stress as much as possible. I stay as active as I can, and I give myself a break on bad days. I am aware of the consequences of this disease and I know that I could end up being in a wheelchair, but I no longer let that stop me. My best advice for someone newly diagnosed with EDS is to talk to your doctor now about you can keep the mobility you have now, or even how you can get any back that you may have lost. Take it easy on yourself when the pain gets bad and most of all, don't give up!




*********************************************************************************
Christina Griffin is a student teacher, wife, a mother of four, and a grandmother of three. Her diagnosis of severe and life-threatening food allergies came in 2010 and then snowballed into a diagnosis of Sjögren's syndrome, fibromyalgia, PTSD, anxiety with memory loss, and EDS. Christina spends her free time finding learning activities for her students, studying, watching Gilmore Girls, gardening, walking/hiking, and reading. She also enjoys music (both playing and listening), and writing.

Friday, February 19, 2016

Comfort Zone Escape

"Each of us must confront our own fears, must come face to face with them. How we handle our fears will determine where we go for the rest of our lives. To experience adventure or to be limited by the fears of it." ~ Judy Blume


Today is the day! I leave this afternoon for a weekend retreat at Kripalu with one of my dearest friends. It's called the Manifestation Workshop: On Being Human (led by Jennifer Pastiloff). Doesn't that just sound like the perfect retreat?

I have been looking forward to this experience for almost a year and a half now. I've NEVER done anything like this. Actually, the reason I didn't go last year was because I was too afraid my body couldn't physically handle it; not just the yoga classes, but all that comes with this type of thing.

Does that mean my health is better this year? No, not really. My doctor has me on a course of prednisone, which is helping, but not quite as much as I had hoped. At this point though, I'm going for it and I am going to do the best with where I am at this week.

I will be staying at Kripalu for two nights, in a dormitory, with a bunch of strangers, minus the dear friend of course. We will be attending workshops, doing a lot of yoga, a lot of writing (yay!), and eating together.

So. Outside. My. Comfort. Zone

There is a lot of uncertainty for me regarding this weekend. I may have to climb in and sleep on a top bunk. I don't know yet what access I will have for certain medical things I need to take care of (i.e. using my humidifier), so I am trying to do extra treatments today before I leave to help cover me until I get back home Sunday afternoon. What I need to pack for myself personally is minimal, but so much to think about medically.

Health issues aside, I'm also going out of my comfort zone just by getting into the car and going off into a new environment. I don't know about anybody else, but it brings up so many insecurities for me; insecurities that I wish I didn't still have to face at forty-four years old...

I'll be fatter than everyone else.
I'll be an utter failure during the yoga classes.
I'm not strong enough,
Or flexible enough,
Or witty enough,
Or funny enough.

See my problem?

The good news is, those WERE my fears. I've been working through them and so today, I'm in a much better place about it all. I'm so excited, I cannot even stand it! Excited for the workshop, to spend time with my girlfriend, to be at Kripalu, and last, but not least, to have someone else preparing and cooking all my healthy meals this weekend!

I'm looking forward to meeting new people and connecting with them and more importantly, myself. Life has been bumpy lately, no doubt about it. I spend a lot of time and energy taking care of my physical body, so it will be nice to have time set aside to take care of all the other stuff. And to be in an environment where everyone else is doing the same thing.

So, I'm going to finish packing and then open my heart and mind to this big daring adventure.

Happy weekend!!

Tuesday, February 16, 2016

The Road To Acceptance


For those of you who follow my blog fairly regularly, you may remember a post I wrote about two weeks ago called Accepting Chronic Illness. It was a very personal and honest take on my current inability to fully accept having Sjögren's syndrome and the limitations that come with such a diagnosis. If you are interested, you can read the essay by clicking HERE.

A while back, I also started following a website called The Mighty. It is a website dedicated to real life stories of people living with disabilities, disease, and mental illness. The most recent article that was published caught my attention and even more specifically, a particular quote:


"Accepting the fact that I will never get better is what has allowed me to live my life and continue to work towards my goals without waiting to 'get better.'" - Joan Elizabeth.


Light bulb moment.
This is what I have been doing...

Waiting to get better.
And working to BE better, no matter what the obstacles are.

It's no wonder I have fallen into such a dark hole these days. Since my symptoms first started wreaking havoc on my body in 2008, I have been in a constant battle to get better and overcome all the obstacles and challenges that get thrown at me healthwise.

I always thought this was all good stuff. Stay strong. Beat the odds. YOU CAN CONQUER ANYTHING! Sweet baby Jesus, I'm annoying myself even rereading what I just wrote here.

Don't get me wrong; I am very well aware that there is no cure for Sjögren's syndrome. Will there be in my lifetime? I highly doubt it. Or maybe I just don't want to get my hopes up too high about whether there will be a cure or not. However I really did believe that if I found the right doctors, followed the right eating plan, got enough rest, and just TRIED HARD ENOUGH, that I could beat this thing into submission.

If I just prayed enough or had enough faith, maybe it would all go away.
If I didn't let myself focus so much on my symptoms, they would go away.

I do think that a positive attitude can go a long way. I also think that the medical community is very much lacking in its treatment of autoimmune illnesses, so we do have to be our own advocates. But, just because I have done everything in my power to get better, doesn't mean I WILL get better or even STAY better.

So the questions that then come up in my mind are: why do I think I am not good enough in my present state? Why do I think that I have to go to work every week in order to prove my worthiness as a human being? Why does the likelihood of being on disability the rest of my life make me feel like I am lesser in some way? Because if any one of you said that to me about yourselves, I would be all over you. I would tell you the truth: that no matter what your present circumstances are and no matter where you are in your medical/health journey, you are so worthy. I would tell you that your existence on this earth is not defined by a paycheck. Or by how well you can keep your house clean. Or by your inability to stay out of bed all day.

Although lately I do feel like this, I am not talking about completely giving up and resigning myself to a life in bed. But what if, I mean seriously, what if, I accepted the fact that I am not going to get completely better? What if I just accepted that there are going to be things in this life that I cannot do, such as working a part or full-time job? Or staying up past 6pm at night on a regular basis?

What if "beating my illness" is less about not having physical symptoms and more about learning to live with those symptoms more gracefully?

I've been waiting to get better for eight years now. My life has not stopped during that time, but everything I have accomplished, such as publishing my first book, has felt like temporary successes. You know, the goals that I work on while trying to get permanently better. And for those of you who know me well, you know that in a lot of ways, I AM better. I spend much less time in the hospital than I used to in those early years. And I guess that gave me false hope; that eventually I could make myself all better if I kept pressing on.

As the author of the quote wrote, I do have goals. For example, I have a lifetime goal of going to Ireland; something that has been on my bucket list as long as I've known that Ireland has existed. It's a goal that my husband has encouraged me to pursue and would like to pursue it with me. For years, I have been postponing going, despite the fact that we already had the money set aside. I kept waiting to feel better and feel confident that I will be well when we travel.

Recently the reality hit me that if I keep waiting, I am never going to Ireland. So instead of waiting, we met with a travel agent yesterday and we are planning the trip for in six months, with trip insurance coverage of course. Instead of waiting to be well enough to go, I am trying to come to terms with the fact that despite all the precautions I can put in place for this trip, there will be times during the vacation, maybe even for the whole duration of the vacation, that I am not going to be better. It may make things a little scary for me, but I will be in Ireland, even if some of the days are in bed.

To me, acceptance is different than giving up. Giving up implies that I do not want to try anymore. It means becoming a victim of my circumstances. But acceptance? That's about being at peace with where you are; even in the midst of the pain, the fatigue, and the uncertain future that so many of us face.

So for today, accepting my illness means that I am spending the day at home, mostly on the couch. It means sitting in a warm and cozy house, with my adorable pooch, and throwing my words out into the world, in the hopes that they will be of use to someone, somewhere. Today, acceptance means embracing what the larger dose of prednisone is doing to my body, both good and bad. It means that there is housework that won't get done and errands that I will have to try again for tomorrow. It means being content with where I am at, in this day.

That where I am at in THIS day is more than enough.





Friday, February 5, 2016

New Sjögren's Medication Study

If you have Sjögren's syndrome, or know somebody who does, this is a must read.

I see an oral medicine doctor, Dr. Athena Papas, at Tufts University School of Dental Medicine in Boston. She has been an invaluable part of my medical team in treating and managing the oral complications I have from Sjögren's syndrome, the most important of which has been removing salivary stones from my glands in a non-invasive manner. Since I started seeing her, I have not had one gland infection or permanent blockage.

A while back, she mentioned to me that she is heading up a study to test a potential new Sjögren's medication. At my visit this week, she gave me the eighteen page document she gives to prospective new participants. I am not going to rewrite the entire document, but I am going to try and present to you the highlights of the document because my understanding is the investigating group is still looking for study volunteers. According to Dr. Papas, I do not qualify for the study, but I am publishing this in case any of you may qualify. I will provide the contact information at the end. And yes, I have permission to share this information.

This study is a multi-center, randomized, double-blind, placebo-controlled, parallel group study to assess the safety, tolerability, pharmacokinetics, and preliminary efficacy of a new biologic medication currently called CFZ533 in patients with primary Sjögren's syndrome. The principal investigator is Athena Papas, DMD, PhD. Co-investigators are Britta E. Magnunson, DMD, Arwa M. Farag, BDS, DSSc, and Mabi L. Singh, BDS, MS, DMD. The study site is Tufts University School of Dental Medicine in Boston, Massachusetts. The project is being sponsored by Novartis Institutes for BioMedical Research.

The study is being conducted  to test an experimental drug for primary Sjögren's syndrome (pSS) with the current name of CFZ533. The goal of the study is to see if the medication is well tolerated and if it has a positive effect on Sjogren's syndrome (SS). The study involves taking multiple doses given by intravenous infusion. Thirty subjects will be enrolled. The goal is for a total of forty-two subjects to complete the study across ALL study sites. There are twelve study centers planned in the United Kingdom, Hungary, Switzerland, and in the United States. More study centers may participate in the study later.

This is the first time CFZ533 will be tested in subjects with pSS, but it is not the first time that the drug has been given to humans. As of December 15, 2014, forty-eight healthy volunteers and six patients with rheumatoid arthritis have been given intravenous or subcutaneous injection of CFZ533 in the clinical trial. Overall, there have been no abnormal lab results and the drug was tolerated well.

The following is is a summary of the requirements to participate in this study:

* Must be between the ages of 18-75 with a confirmed diagnosis of PRIMARY Sjögren's syndrome. Must weigh between 110-330 pounds.
* If you are on glucocorticoid treatment (i.e. steroids), the dose may not exceed 10 mg (or equivalent) per day and must be at a stable level for at least two weeks before starting the study and for the duration of the entire study.
* If on Plaquenil, the dose must be stable for at least four weeks before officially starting the study and for the duration of the study.
* If being treated with methotrexate, the dose may not exceed 25 mg per week for at least three months before officially starting the study and for the duration.
* Vaccines must be up-to-date.
* Cannot have a confirmed diagnosis of Seconday Sjögren's syndrome.
* May not be using other investigational drugs or have a history of hypersensitivity to the study drug or to drugs with a similar chemical makeup. Cannot be on medications that are known to cause dry mouth and cannot be a person at risk for thromboembolic events.
* Cannot be pregnant or nursing
* Cannot have donated blood or had significant blood loss in the past eight weeks.
* Cannot participate if you have a pancreatic injury or pancreatitis, have the presence of a medically significant heart condition, have experienced a systemic infection within thirty days of starting the study, have a condition that puts you at a higher risk of infection or have a history of tuberculosis.

If you have received any of the following treatments, you cannot participate in the study:

* Cyclosphosphamide within six months.
* Corticosteroid bolus I.V. >1mg/kg within three months.
* Rituximab within twelve months.
* Belimumab within six months
* Any other biologic within one month or five times the half-life. A biologic is a medication that is created using human genes. They are designed to restrain certain parts of the immune system that cause inflammation. Half-life is the amount of time taken for the concentration of the biologic to decrease in the body by half.
* Any other immunosuppressive such as cyclosporine A or mycophenolate within three months.

Are you still with me here?? Whew, that's a lot of information. I need a lunch break....

OK, I'm back. I took quite a bit of time to explain the study in order to give the reader a better idea if he/she qualifies for the study. I know a lot of this information is technical, so if you are unsure if you would qualify, definitely call the number at the end of this entry and speak to someone.

I am not going to be as detailed about the procedure of the study because it is quite extensive, but I will summarize what I think are the important points.

The study is comprised of fifteen visits. The study takes approximately nine week (thirty-six months) total. It is broken down into three study periods:

1. Placebo-controlled period. Four doses of either the experimental drug or a placebo will be administered in addition to the standard of care therapy for treating pSS. You will not know if you are receiving the actual drug or a placebo. A placebo is a substance that has no therapeutic effect. Placebos are used as a control component to test the effectiveness of the study drug and determine whether the delivery circumstance of the study drug has an effect as well.

2. Open-label period. All study subjects will receive four doses of the experimental drug.

3. Follow-up period. Subjects will be followed up without study drug.

Some other key points for the study:

* The first two visits are for screening and collecting baseline information.
* Your salivary flow and eye dryness will be measured (noninvasive). If you have not yet had a salivary gland biopsy, that will be required (invasive).
* Blood samples will be taken during the study.
* As with any study or medication, there are risks. Examples of this include allergic reaction, increased risk of infection, blood clotting, etc.
* Female participants who are sexually active, and are able to get pregnant, must follow strict guidelines regarding birth control. Details available before starting the study.

There are benefits to being a part of this study. You will receive medical care during the study. There is some scientific evidence showing that blocking CD40 by CFZ533 may have therapeutic efficacy in pSS, however the benefits of CFZ533 are not established and should not be considered fact. Information from this study may help you and/or other people with pSS in the future.

All subject records will use numbers and/or initials and be de-identified. Only study personnel will have access to the locked storage area where these files will be kept. All study personnel will be required to follow HIPAA guidelines.

There is no cost to participate in the study. You will not be charged for the study drug or any of the tests/procedures performed. Expenses, such as transportation, are your responsibility at all times. You will be paid for taking part in the study. This is to compensate the subject for their time. Each study visit has a $200 value assigned to it, so total compensation to complete all fifteen visits will be $3000. This is taxable income and you will be required to complete a W-9 form. Payments will be made after completion of each study visit.

If you are interested in learning more about this important study and/or would like to participate, please contact Elizabeth Tzavaras at (617) 636-3931. I would also encourage you to share this information/blog on any social media sites you are a member of, especially if you know other Sjögren's patients. If you are a blogger, especially if you are a medical blogger, I would encourage you to do the same. We have no cure for Sjögren's and as far as I am concerned, we don't even have decent treatment options. In order to get reliable and viable treatment options, we need research. Research requires study volunteers, so please spread the word!

Monday, February 1, 2016

Accepting Chronic Illness

I am tired.

For those who know me, that is not a surprising statement to hear. After all, I have a chronic autoimmune illness; one where fatigue is one of the most prevalent symptoms. Tiredness is as much a part of my daily life as food and sleep. Most of the time, it's a given.

But lately, my tiredness is more than physical. It's mental, emotional, and spiritual. It's the type of tiredness that makes me want to stop fighting the daily battle of living with Sjögren's, and the host of other medical issues, that have plagued me over the years.

Is it tiredness?
Or is it depression?
Or grief?

The label isn't important to me. Actually right now, there's not much that is important to me because all I want to do is sleep. Or veg out in front of the TV for days at a time. I get fleeting moments where I see a glimmer of my usual self - the self that enjoys the living hell out of life on a daily basis because she knows that life is short. And precious.

There are also moments, hours even, where I can put on a smile and appear to the outside world as my usual self. I reserve my energy for this act when I am with people who really matter to me, because I cannot help but think that those precious people deserve so much better than a morose, down-in-the-dumps shell of a person.

Or at least I did think that. Now I am beginning to wonder, what would be so wrong with being myself all the time and letting people really see me? All of me. Why do so many of us feel this burning desire to pretend? To be who we are not in order to protect our loved ones? When you live with a chronic illness day in and day out,there is only so much energy to go around. Do we really want to waste any of it pretending we are fine when we are not??

Many of you know that last September, I started a new part-time job as a school nurse. It was my first venture working regularly since I went out on disability in 2008. I had been working as a substitute school nurse for about a year and a half and I wanted to push myself to advance to working part-time, fourteen hours a week. Surely that was manageable I thought.

It wasn't.

There were a lot of extenuating circumstances during my new employment. My gallbladder gave out on me and I suffered for months before I finally went in for surgery. I was also working towards my school nurse license, which took a lot of my energy and time. I was experiencing neurological symptoms and then a worsening of my pain and fatigue issues. For a variety of reasons, I found this new place of employment MUCH more stressful than my other job where I sub at. I enjoyed what I was doing at the part-time job, but the price I was paying physically was no longer manageable. Actually, it was never manageable. The only reason I made it all the way to January was because I was so damn determined to succeed.

That's really the root of the problem: my drive to succeed. After going out on disability, I spent YEARS trying to figure out how I could get back to work in some capacity. While out on disability, I started a blog and wrote a book. Some people would call that working but honestly, I do not make a living doing it. And then when I did start working out of the home (as a substitute school nurse), I spent even more energy figuring out how to work part-time on a regular basis. But that wasn't going to be my end point. I had a plan. I was going to gradually build up to being back in the workforce full-time, and nothing was going to stop me.

Especially not Sjögren's!

But it did. Despite a WONDERFUL three week run on prednisone around Christmastime, it all began to unravel for me physically and I made the decision to give my resignation with the caveat that I would still be interested in subbing at this school as well.

I was struggling so much in the weeks leading to my last day that when my last day came, I felt nothing but relief. However, I wasn't prepared for all the realizations that would come with leaving a job that I had worked so hard to get.

Looking back, it's obvious to me now that with my medical needs, this particular job was not the right match for me. But I also realized that no matter how hard I pushed and how badly I wanted to succeed, my illness was not going away. I think that a part of me thought that as long as I TRIED hard, it would all work out. My symptoms would become more manageable. I just needed to stay positive and optimistic. I just needed to do more self-care to make my work days more doable. I needed to have faith in God and then I would succeed.

That's the way I have always managed having Sjögren's syndrome: I stay upbeat and I always continue forward, constantly trying new treatments and working on ways to manage my symptoms. Be courageous. Be brave! Don't give up. Keep your chin up!

No longer.
Or at least, not right now.
Because I am so damn tired.
And oftentimes, chronic illness is just a bitch.

I have been living with Sjögren's for at least eight years now. I do what I'm supposed to do to manage my illness. I do what I NEED to do. So in some ways, I have accepted my illness. But I am now beginning to understand that I have not truly accepted my illness. Not really. I have still been clinging to the hope that I can overcome it and go back to living a life similar to the life I was living before those first symptoms appeared. Leaving my job has helped me to see that it is good to push your limits and to have goals, but there is also something to be said for accepting yourself for exactly where you are at in any given moment.

This brings me to now, this day. A day in which I woke up in the morning and the first thought I had was that I wish I hadn't woken up. Because lately, waking up means facing another day of challenges that drain the living hell out of me. I have to force myself to not snap at people. I cry at the drop of a hat. It's hard for me to be around people because they are not going to say what I need to hear. What do I need to hear? I need to hear that it is OK to be sad. It is OK to want to lie in bed all day and not want to do anything. Maybe not forever, but at least for a little while. I need to hear that it is OK to mourn the person I used to be. Because let's face it, that woman is gone. I don't want to hear that I can do anything I set my mind do because the reality is, I cannot. Maybe, at the end of the day, it's not so much about what I need to hear from other people, but rather, what I need to hear from myself.

Maybe acceptance and living with a chronic illness is less about being brave and more about being authentic. I think for me, true acceptance would mean being OK with where my body and mind are at on any given day, without judgement from that inner critic that says I need to be better. Or stronger. Acceptance would mean valuing what my body can do and not what I wish it could do. It would mean finding a way to live in a state of grace no matter what physical challenges lie in front of me.

Authenticity.
Acceptance.
Grace.