Tuesday, May 31, 2016

The Value of Hope

"There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something tomorrow." ~ Orison Swett Marden

I've been thinking a lot lately about the concept of hope.

That can be a bit of a dangerous thing when you live with a chronic illness that has no cure, and very little in the way of successful treatment.

But, I have a trifecta of hope happening in my life right now; a process that started sometime in April. This is ironic actually as Spring is a time of rebirth and renewal....a reawakening, if you will.

My trifecta is a combination of three things that I am doing to try and help alleviate my autoimmune symptoms, caused by Sjögren's syndrome, and therefore increase the quality of my life. I have to be honest, my quality of life was truly beginning to take a nosedive prior to April and after about a year of this happening, it was time for some more drastic measure to be taken, both on my part and the part of my medical team.

The first part of this trifecta was starting a new biologic medication called Orencia (abatacept) on April 6th. It is not a medication for Sjögren's specifically, but rather one often used to treat rheumatoid arthritis. However, there has been some research published and patient reports that Orencia has helped some patients with Sjögren's syndrome, especially the symptoms of joint pain and fatigue.

The second part is that I am in the middle of (literally) an eight week Mindfulness Based Stress Reduction (MBSR) course, a program that was founded at UMASS Medical Center in Worcester, MA and since its induction, has helped thousands of patients with a variety of chronic conditions. This is something I have been considering doing for about a year or so and after the third person suggested it to me, I did my research and decided to go for it.

The third is a dramatic change in my diet, which started May 23rd. I embarked on a twelve day whole food, plant based detox cleanse with the sole purpose of trying to settle down my physical symptoms. That will end in a few days and I don't know exactly where I will go from there, but I imagine that I will continue some version of it since I have already seen benefits.

I did not plan on doing all three of these healing and potentially life-changing things at the same time and to be honest, I would never have planned it this way. I have to travel to Boston for the Orencia infusions, the MBSR class takes three hours on Thursdays, as well as at least an hour a day of "homework" and the diet change? Of Lordy, between the shopping and cooking, that has become VERY time consuming for me. But, I did not control the schedule of when all three happened so I jumped in, trusting that God knew what he is doing.

All three of these things bring a lot of hope to the table for me, something I haven't had a whole heck of a lot of recently. I know for certain that the dietary changes will help me and the MBSR class cannot hurt me, and my guess is I will experience some benefits from that as well. The Orencia is a crap shoot at best, however I have already experienced some positive effects from it. The real question for me is how much will these life changes help my physical symptoms, both individually and collectively? What if the changes help me so much that I am able to gain most, if not all, of my previous functioning back?

I know, that's a tall order and honestly, any improvement would be welcome.

But, I was scared.

I was scared to hope.


Because I have been down that road before. You cannot even imagine (well, some of you can) how difficult it can be to put so much hope into something and not have it work out or have it work out just for a brief time before it is snatched away. And what you are left with is pain, more medical appointments, and disappointment. It can be challenging and heartbreaking all at the same time.

But what is the alternative? Not trying? Not taking advantage of the possibilities that are being offered to you? For me, that is not an option. So onward I went, starting with that first infusion in April.

The problem was, even though I was trying, I kept telling myself over and over that I wasn't going to get my hopes up...not about the Orencia, or the class, or the dietary changes...none of it.

It didn't take long though for me to realize that my self-defeating attitude regarding all of this was not exactly helpful. I then found a journal I kept during my Manifestation Workshop at Kripalu in February. The cover said, "Hope anchors the soul"" and I then saw something I had written. It was so powerful.

"I want to manifest good health and wellness."


For me, part of manifesting good health and wellness HAS to be having hope. Hope drives me. It is hope that pushes me to spend a whole day venturing into Boston for my Orencia treatment. It is the thing that help drive me through the frustration of learning how to meditate with my MBSR class. Hope is the motivation I need, when I am tired and in pain, to spend two hours in the kitchen prepping and cooking wholesome, nutritious meals.

Hope is everything.

Now, I have opened up my heart and allowed myself to hope, for many things: good health, a less disabling future, and a body that can get me through the day. Maybe I will get some of this, none of it, maybe all of it, who knows. What I do know is that throughout this ongoing process of healing, I will not give up the thought that tomorrow will be better.

Friday, May 27, 2016

Comparison is the Thief of Joy

"Comparison is the thief of joy." ~ Theodore Roosevelt

I have a confession to make.

I have Facebook envy.

Not over things like people getting married, having babies, etc. I'm good with all the happy events and I will be the first person commenting on your joys. And, your sorrows. No, this is more about the evil jealousy monster that pops up when Facebook world seems so much easier than my world. "Seems" being the operative word here.

Sometimes it is bad, like when I am having a tough time physically and not able to get out of the house much. I open up that Facebook newsfeed, start scrolling, and my mind is assaulted of image after image of people getting together, having fun, and making memories. Many times, I am fine with it all. But then there are other times when it is just plain hard. It's those times that I have to remember that the grass is not always greener and even if it is, who cares??

To be honest, I am guilty of excessive sharing, of what I am doing, on Facebook; which made me sit down and think about my motives in doing that. Why do I post that I am out having fun with my husband? Why do I feel the need to "check-in"? I cannot speak for anyone else, but for me personally, when I post stuff like that, it's all about sharing my happiness with those who are important to me. I don't collect Facebook friends; people who are on my page are people I genuinely care about, want to stay in touch with, and/or want to truly get to know better. The two people that come to my mind right away are my mother and brother. They see me struggle so much and are always supporting me. I know for a fact that they like to see when I am happy and/or doing well.

I have seen people post on Facebook, myself included, about how one cannot get a true picture of another person's life just from reading a person's Facebook page. I agree with that to a point, but the reality is, many people just post the happy highlights of their life. They don't go deeper and allow us to know the unsavory or tough parts of their lives. Sure, everybody has a right to post what they want, but I try very hard to be as authentic as possible on Facebook.

So why the envy on my part? Well, like I said, some of it is based on the fact that I want to be able to be out in the world and because of my physical limitations, I often cannot do that. And, that can be very hard for me. It's not other people's fault, or even their problem. It's just how it is. One of the solutions to this would probably be to spend less time on Facebook.

Then there is also insecurity and that nagging feeling I keep working on eliminating from my life. You know the one: it says "you are not good enough" or "you're too much work."

In addition to that, I struggle at times with feeling left out. I'm embarrassed to admit that, because it shows a vulnerable side of me that I am not always as comfortable with as I'd like to be. Feeling left out does make me sit back and think about if I have been inclusive when the tables are turned. The answer is always yes, to the best of my ability anyways. So then the question comes up for me, is it me? Is there something I am lacking in my personality? Is it the fact that because of my health, I am not always reliable? I honestly don't know the answer to those questions, but I AM beginning to realize that it doesn't matter. My goal as a human being should not be to worry about what people think of me or whether they like me. My goal should be to just be an authentic person doing the best she can in this world.

The funny part about all this is, when somebody talks to me off of Facebook, either in person, by text, e-mail, etc., about what they have been doing in life and the fun they may be having, I am genuinely happy for them, even on my very worst days. I don't have "in person jealousy". I never have. So what is it about Facebook that elicits that response in me when it is the complete opposite off of Facebook? I will get back to you guys when I figure that one out!

This week, I had a Facebook exchange with a friend of mine about a chronic illness blog entry I posted, not one of mine. A couple of things we both said stood up to me, even twenty-four hours later. I had mentioned to her that oftentimes, people are clueless about what people with chronic illness go through on a day-to-day basis and what our limitations are, especially socially. It wasn't intended as a crass statement, just a fact. I know for me, there are maybe two or three people, who do not have a chronic illness, that get what I go through every day...not because other people don't care (some don't, but most do), but because they are not living my experience. The two or three people who do get it are around me enough to see the struggle and trust me, they know it's real!

That all being said, after the exchange with my friend, it made me realize that it works both ways. Yes, most people don't "get it". But oftentimes, I don't get them either. For example, I have no idea what it is like, as a woman, to work full-time and raise children. I can appreciate the struggle of that, but I can never truly "get it" because I've never lived it. The same holds true for for military spouses. I cannot even begin to imagine what it is like to have my spouse serving overseas and seeing them so infrequently, while keeping the household and rest of the family together. I can listen and support, but I cannot truly understand.

My friend mentioned in our exchange about how, as people with chronic illness, our lives are so different than our friends or family member. She's right. What is important to us may not be important to them. Something that they might struggle with may be totally out of the realm of possibility for us. But I guess that is the point I am trying to make. It doesn't have to be us vs. them. Sometimes people don't want to make the effort to understand a person with a chronic illness. And sometimes we are just too damn tired to make an effort to understand them. But, amazing things can happen when we make an attempt to meet somewhere in the middle. Compassion goes a long way to mutual understanding.

One of the best things a friend ever said to me was this: "I don't understand what you go through day to day, but I'm sure it's hard. I'm here." That's it. That simple. Can you imagine what it would be like if we ALL said that to our friends and family?

Despite all this writing, my message is simple: don't compare yourself to others.

You are on this earth for a reason.
You are a miracle.
Shine bright.

Thursday, April 14, 2016

God, Church, and People

As I've posted about recently, I've been struggling in the God department lately, more specifically, about where God is in all the messes that take place in this world. On a broader scale, I am talking about ISIS, innocent people being blown up, and children going hungry and being abused. On a more personal scale, my thoughts immediately go to good people I care about going through one crisis after another, without getting a break. And of course, my own struggles with constantly having to deal with daily medical issues and never seeming to get a reprieve from all of that.

My spiritual life has been even more challenged lately as I have found myself, along with my husband, in a dilemma about my (our) church life, something that has been an integral part of not only our individual lives, but our marriage as well.

When I first started going to church regularly and consistently as an adult, sometime in 2005, it was church that brought me closer to God. And I became dependent on that. But over time and especially in the last several years, I have come to learn that my relationship with God is not, and should not be, church dependent. Don't get me wrong, I am a BIG church advocate. I think churches can be a beacon of hope, strength, and love in a community. I could spend the next several hours discussing with you all the reasons why, if you believe in God, it would be helpful for you to be a part of a church community.

But here's the other side of it. What happens when church is not going right for you? The reasons can be many, or few. What then becomes of your relationship with God?

The past couple of months have left me with more questions than answers about God, church, and people in general, but this week, I hear God speaking to me. Sometimes I just need to shut up long enough to hear him.

I have been hearing God speak to me through the voices of others and it is starting to shift my perspective about where God is in all of the messes in the world. For example, I see God working through a friend of mine as she makes solid preparations for the future of her and her children for after her husband leaves this world. I see her strength and determination in carrying forward, despite this monumental loss that she is facing.

I hear God in her husband's voice, my friend; a friend who has been with me for almost thirty years. We have have had the best of days together, him and I, and also some tough ones, the toughest ones being most recently. But it was God who created this amazing person in my life; one who has brought me so much laughter and love. I feel God in the authenticity of my conversations with this friend...the conversations which now include how much time he may have left and how him and his wife are handling THAT conversation with their young daughters.

Most recently, I heard God in a different friend's voice as well. Her perspective on where God is in all the messes in her own life was the opposite of where mine has been up until recently. She saw the sequence of difficult events in her life as God supporting her and preparing her for her challenges. I'm making it sound more simple than she probably meant it, but I think you know what I am trying to say. Her message wasn't that God was being punishing or didn't care, but rather he was putting into place what she needed to get through it all and continue forward.

While listening to her speak, I could truly see where she felt God was in all her messes. It lightened me. It also made me wonder why we, as Christians, are not having these conversations more...the conversations about God. Are we too busy? Or are we so busy just trying to survive it all?

And when I say talking about God, I don't mean regurgitating scripture over and over again, tossing words around in attempts to get others to subscribe to our way of believing. Or using God as a weapon to bash whatever group of people we feel are violating some Biblical law that man has misconstrued for his own use.

No. I am talking about conversations where we share with each other, on an intimate level. Share our struggles and our strengths. Our weaknesses and our victories. How we see God working, or even not working, in our lives. What our challenges are in leading a good and faith-filled life. What roll does church play in our spiritual life? How important is it? What makes us spiritually fulfilled? To me, those are some of the most important questions.

What are the important questions for you?

Friday, April 1, 2016

How Sjögren's Has Affected Me

Photo courtesy of the Sjögren's Syndrome Foundation

Today is April 1st, the first day of Sjögren's Syndrome Awareness Month. Despite the fact that Sjögren's is one of the most common autoimmune disorders out there, most people have not heard of it and many doctors do not know how to appropriately treat the illness or its complications.

The Sjögren's Syndrome Foundation put out a blog post today which included an updated human diagram of the different systems that Sjögren's affects. Oftentimes, Sjögren's is looked at as solely an illness that causes dry mouth and dry eyes. To start with, the dryness that accompanies Sjögren's is no small matter. Dry eyes can cause serious ocular complications, including vision loss and dry mouth can cause difficulties with swallowing and rampant tooth decay. In addition to dry eyes and dry mouth, Sjögren's can adversely affect just about every system in the body, as illustrated in the SSF's diagram above.

I have been doing this blog for a while now, so I don't remember if I posted about my specific Sjögren's symptoms, but I seem to think that I never have done so. This blog entry is going to be about that...the Sjögren's related symptoms that I have had to deal with since my journey with this illness began. Please don't panic! It does not mean you will have the same symptoms or even have it as severely as I do. But, it is important to be as informed as possible. Only YOU  are going to be the person driving the bus towards wellness.

* Dry eyes: An eye doctor picked up on this well before I even noticed my eyes were dry. I believe it was probably my very first symptom and it occurred well before the disabling symptoms occurred in 2008. The first eye doctor I had picked up on the dryness during a routine eye exam and I completely blew off his suggestion to start using eye drops regularly. That was, until the dryness became uncomfortable and once that happened, there was no going back. I have experienced mild corneal abrasions from the dryness. The abrasions have not been a problem since I started working with my new eye doctor. He diagnosed me with Meibomian Gland Dysfunction which subsequently changed the treatment I was doing. The dry eyes are still a daily issue for me, but the severity has lessened some.

* Joint and muscle pain: If you've read my story in my book Tales From the Dry Side, you will know that joint pain was the first major symptoms I had that became disabling. Muscle pain followed a few years later. My joint pain often occurs in my finger and toe joints, wrists, elbows, shoulders, ankles, and knees. The muscle pain is widespread The intensity varies dramatically and is oftentimes activity dependent. I have also noticed a trend in stress and diet exacerbating my pain levels. The treatments I have tried are numerous and if you want details, please feel free to e-mail me.

* Respiratory difficulties: This is a tough one for me to describe. It was the second debilitating symptom I had which started in 2008. I call it asthma just for simplicity, but it is not asthma in the traditional sense. My pulmonologist has also called it reactive airway disease. I have had abnormal pulmonary function tests and at times have required inhalers that are typically used for COPD. This particular issues has improved dramatically for me in the past few years, since I started getting allergy shots actually.

* Reflux and esophageal motility disorder: I have had some serious bouts of reflux since getting sick. At one point, in 2012, I was vomiting all of my food and ended up hospitalized. After more tests than I care to recount, I was told that I have an esophageal motility disorder called nutcracker esophagus which means the muscles in my esophagus don't contract and relax the way they should. Medication helped tremendously for a while and I was able to wean off of it. Once in a while, it acts up on a much smaller scale. The reflux is being controlled with alternative medicine supplements.

* Interstitial cystitis (IC): I get angry about this one. I suffered with what felt like UTI pain and symptoms on and off for almost a year before somebody recognized I had IC. I kept getting tested for a UTI and then was told the symptoms were in my head. It took a third doctor (a urology specialist) to diagnose me correctly. I had a procedure done and changed my diet and I have been stable for several years now.

* Fatigue: If I could get rid of one symptom for the rest of my life, this is it; even more so than the pain issues. Because no matter how much rest I get, if I am not on steroids, I am chronically exhausted. I do have a little control over the fatigue in terms of getting a lot of rest and/or watching my stress, but it never really goes away. There are just varying degrees of it. And, it really affects my day-to-day life, my ability to work, and my relationships.

* Dry mouth: I didn't develop this symptoms until I had been sick for a few years. Once I did, my mouth went haywire. The biggest difference in the severity of my dry mouth has been seeing an oral medicine doctor.

* Salivary stones/blockage/infection: Due to the lack of salivary flow and changes in the consistency of my saliva, due to Sjögren's, I have developed salivary stones. I also get swelling. On one occasion, I got a major blockage and infection on one side that required steroids and antibiotics to clear. The oral medicine doctors suctions out the stones every few months, which has helped me significantly.

* Neuropathy: This is something I am currently in the process of being tested for. I would say for me, it is the second worse symptom, after fatigue. Peripheral neuropathy causes nerve pain and itching in my legs and feet, sometimes making walking a huge challenge. I have also been experiencing dizziness from changing positions and from standing more than a few minutes. I have come very close to passing out more times than I can count. I'm also experiencing dramatic temperature swings. This may all be related to something called autonomic neuropathy. The jury is still out on that. But all the evidence is pointing that way.

* Dry nose: This has resulted in painful sores and staph infections in my nose.

* Dry skin: Probably the lest dramatic of my symptoms, but annoying enough to merit a mention!

* Raynauds: This is a lovely disorder that occurs when your hands and/or feet experience severe cold intolerance and this impacts your circulation. The hands/feet undergo color changes and the process can be quite painful.

* Sinus inflammation/infections

* Brain fog/memory loss: I had testing done several years ago that showed I had memory loss. Since then, I have been working hard on my memory issues, but that, as well as the brain fog, is still very much an issue at times.

* Rashes/photosensitivity: The frequent rashes have diminished over the years, but I still have a really bad time in the sun. When my husband and I were in Florida a few years ago, despite using SPF 50 liberally, I got a horrible sun-related rash that took days to get under control.

The above list included the symptoms that are related to Sjögren's. There have also been a few other issues that MAY have been related to Sjögren's, but no definitive relationship can be proven:

* Gallbladder disease: Obviously, many people without Sjögren's have gallbladder disease and I had several risk factors associated with it. However my observation and research has shown me that gallbladder issues are very common in people with Sjögren's.

In addition to that, I have been experiencing a lot of stomach upset and diarrhea over the last few months. I had my gallbladder out in November of last year. I did recover but I don't know if these GI issues are related to the gallbladder surgery or if they are autoimmune related. I will be honest, I have so much going on right now medically, it's on the back burner.

* Guillain-Barre syndrome (GB): This happened to me in 2012 and it was seriously one of the scariest things in the world to go through. I was fortunate enough to have a mild case. There is no correlation between Sjögren's and Guillain-Barre, but GB is also an autoimmune disease.

* Hypothyroidism: My doctor cannot determine if my hypothyroidism is related to radiation treatments I had years and years ago, or if it is autoimmune in nature.

* Vocal Cord Dysfunction: I don't know of a correlation between this and Sjögren's, but I do know many Sjögren's patients who have experienced vocal cord dysfunction.

* Migraines: I never had migraines until I had other Sjögren's symptoms, so why knows!

I would be interested in hearing about what Sjögren's symptoms you or your loved one have experienced. Please feel free to comment below....

Thursday, March 31, 2016

Where Is God In All Of This?

It's the end of March and here in New England, the temperature is supposed to be in the 60's. The sun is already shining brightly and I can feel the gentle breeze coming through my already opened windows.

I woke up sick for my second straight day with a cold; definitely not the worst I have ever had, but the exhaustion is unbelievable. I'm not even sure if the exhaustion is from the cold, the Sjögren's, or both. I just know that between this cold, an exacerbation in my autoimmune symptoms, and a stomach virus a few weeks ago, I am done.

So done.

I've had a lot going on in regards to my health lately, specifically more joint/muscle pain, terrible pain (?nerve related) and itching in my feet and legs at night, dizziness when I stand too long or change positions, nausea, chills, you name it. I could go on and on because honestly, there's not too much NOT acting up in my body right now, but that gets old after a while.  It feels like my entire body is pissed off and launching its own rebellion.

Partly because of all this, I have been doing a lot of thinking about God lately. And church. And faith. I will be honest, I'm kind of ticked off at God lately. And curious. Curious about the eternal question: why bad things happen to good people. More specifically, why these terrible illnesses happen to the best people.

If I sit back and think of all the people I know with autoimmune illnesses, cancer, and other life altering diseases, I would say that 95% of them are the most kind hearted, giving people you will ever meet in your life. These are the people who do volunteer work and constantly want to give of themselves to others. But here is the problem: these people, including myself, cannot do all the good they want to do in this world because they have had so many of their physical abilities taken away. As of late, my volunteer work has come to a halt and I have had to refuse just as many shifts at work as I've accepted; a job which calls me to be of service to others.

So what does God have to do with this?

Well, a lot.

I was told recently, and it certainly wasn't the first time, that I just need to have more faith. God has a purpose for my pain and suffering. God will heal me. Have more faith. Pray more. Do more for others. God will answer your prayers.

I'm calling bullshit.
At least for today.

I know all the devout Christians in the room are probably freaking out right now reading this. And, I do consider myself a Christian, and a pretty strong one at that. But, I no longer believe that God is making me suffer in order to make me into a better person. I'm not even sure God is really responsible for my pain and suffering. Because surely if he was, he would have brought some healing my way by now, no? The response I have gotten to that statement in the past is that everything is on God's time, not mine. I get that. I am not in control and honestly, that's quite a relief. But that doesn't answer the question of: where is God in all of this?

So then I ask God, when is enough, enough? I spent the first six or seven years of my illness thinking that God was using my illness to help others and to make me a better, stronger person. Have those things happened? Definitely. Would they have happened if I didn't struggle so much with my health?

Maybe not.

Maybe I just needed to tell myself that in order to keep pressing forward; in order to not just totally give up on this life of mine that for twenty years, has been riddled with so much sickness, pain, and struggle. I have a lot of respect for those Christians who have complete and total blind faith in God and in what his purpose is for each of us. I think I may even envy those people at times. They are able to not question God or his motives. They completely trust in him to take care of them, no matter what. I have had periods of time like that, but more often than not lately, I doubt all of it.

And you know what? I think that is OK. For me, a faith based on doubt, as well as belief, is a faith of my true self. The questions I ask and the doubts that I have are because I seek answers, rather than blindly ascribing to beliefs that others want me to believe. Because at the end of the day, it's not between me and other people. It's not between me and my church. It's between me and God. For me, sometimes it just comes down to the basics...

Do I believe in God? Yes
Do I believe Jesus died for our sins and rose from the dead? Yes
Do I believe in a loving and non-bigoted God? Absolutely

What I also do know is that I have more questions than answers right now and the heaviness of all that this morning was tremendous. And I was upset. So I decided to go beauty hunting, a concept that was introduced to me by Jennifer Pastiloff, an amazing yoga teacher, writer, and human being. To me, beauty hunting is the same as looking for God because in essence, God is the creator of, and is a part of, all that is beautiful in this world.

I thought that beauty hunting would be a challenge since getting out of bed is a challenge in itself this week. But once I opened my mind up to the process, it just sort of happened. I started by going to the fish tank because my husband told me, when he left for work this morning, that our new starfish was making an appearance in the front of the tank. This is a BIG deal because first off, I am obsessed with starfish and secondly, we just got him. He spends a lot of time hiding in the back of the tank or in between all the rocks. But today, he was out and about for me to enjoy.

While I was at the tank, our little clown fish, Nemo, also came to the glass to look at me. The bonus though was that our Watchman Goby fish came out of HIS hiding spot, which is not only a rare occurrence, but it was the longest I've seen him out and about since we got him a few weeks ago.

Part of the reason I woke up so annoyed was because it is so beautiful out today and I am stuck at home. So, I took my 14 1/2 year old dog, Molly, out in the backyard so she could get some fresh air. Apparently, I needed the fresh air just as much. We found that my second favorite flower, our daffodils, were fully in bloom and looking beautiful and so I decided to sit on the deck with Molly for a bit.

There is something magical about our back yard. Despite the work it needs and the fact that we have college student renters for neighbors all around us, it is so peaceful. There are birds abound and rustling trees that instantly relax you. We recently had a new deck installed and it is just glorious for sitting outside and appreciating nature.

 After a few minutes, I heard our resident woodpecker go into action on a tree. I think they are the coolest. Next thing I know, I decided to lie down on the new deck, in my pajamas, with Molly sitting beside me. We were looking at the perfectly blue sky and all of a sudden it hit me: God was there. All of those things I noticed beauty in this morning? That was him, his creations.

It was almost as if he was telling me ""I'm here. Don't give up. Here is the beauty in this day for you."

And just for today, that was enough.

Sunday, March 6, 2016

Guest Post: On Being Naked...A Man's Perspective by Chuck Myers

Written by Chuck Myers

A year or so ago my wife, Christine, the author of this blog (and Tales From the Dry Side) wrote a piece titled "On Being Naked," which was published on another blog site called The Manifest-Station. It was good. It described her terrible fear about being in locker rooms, and how she's overcome it. At the end, she says that being naked in the locker room didn't cause her to explode (a good thing), and that she finally felt free.

This post came to my memory this week as she recently spent a weekend at a yoga workshop, and when she went to soak her feet in the hot tub, she opened the door to find six or seven women in the tub, in their birthday suits.

She plucked up her courage and soaked her feet anyway, although she did remain clad in her "yoga suit."

I could never do it.

If I were to open a door on six or seven men, naked in a hot tub, I'd run the other way. I would not stop at my room to pick up my belongings, but would head straight for my car, get in it, and ignore each and every speed limit sign on my quest to get as far away from that place as possible, in the shortest span of time I could manage.

I am extremely body conscious, to say the least.

I do NOT mow the lawn with my shirt off, even though our patch of weeds is mainly in the back of the house, and this is not because I am afraid of getting a sunburn.

I hesitate to take my shirt off at the beach, only doing so when I'm going in the water, and covering myself up as soon as I am out.

I used to hate wearing shorts in the summer. It's only been a few years since I've started wearing shorts outside of the gym.

I tend to not wear tight shirts and if left to my own devices, would generally buy everything about a size too large.

I do take showers at the gym, but I go into the shower stall with my sweat-soaked workout clothes, clinging to my body, only getting undressed with the "not-wide-enough curtain pulled closed. When I'm finished, I venture out to my locker with a towel wrapped tightly around my lower body, and I then dress as quickly as possible.

As a result, I'm never cooled off enough by the time I get dressed, and my street clothes need to hit the laundry by the time I get home.

At the gym, in addition to my own phobia about my body, it makes me really uncomfortable when guys are taking showers without the curtain pulled, especially when they call out to me as I'm walking past. "Hey, have a good run?" just isn't something I want to hear from someone as they're soaping their butt.

So where does this come from? I'm not in that bad shape at 6'2" and 230 pounds. I'd love to lose a few of those extra pounds, but I do like to eat. I was raised Catholic, which I'm sure had a huge effect on how I view my body, but I haven't been a practicing Catholic in thirty years or so.

If I had to put my finger on it, I'd guess that time spent in the high school locker room was the biggest contributor to my issues. I was NOT a jock in high school. I played one year of football and only finished that year because I hate to quit something I've begun. It was hard though, to get through that year of smacking each other in the head all the time, and that was in the locker room.

I can't speak about now, but back in the day, high school locker rooms were tough places to be and you couldn't avoid them. Gym classes were of course mandatory, as were the showers afterwards, when class was over. There were no shower stalls, just a line of shower heads in a tiled room. That was tough for me. Not only was I one of those guys that couldn't climb the rope and always flunked the physical fitness challenge, I was also pretty much hairless. Other guys in my class were sporting full beards as I was vainly searching for the beginnings of stubble in the mirror every morning.

It's not that there was a lot of teasing going on about this.
There didn't have to be.
It was unspoken.
The sidelong glances and smirks were enough.

I of course grew body and facial hair eventually; yes, I was still in high school. That made things easier, but I've never overcome my dislike of people seeing my body. It might be different for women, but guys are competitive, and me probably more than many. I can't help but feel that I am being evaluated and ranked when I am in the locker room.

So, I'll go on wearing my sweaty gym clothes into the shower stall, and dress as quickly as possible when I am finished.

As Billy Joel said, "You may be right, I may be crazy," but I'm comfortable with that.

In the meantime, I applaud Christine for having the courage to overcome her own fears.
Maybe someday, I can do the same.

If I do, I promise not to go out to mow the lawn shirtless, belly flopping over my belt, with a beer in the cup holder of my twenty horsepower John Deere!

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.


Tuesday, December 15, 2015

Saying Goodbye To My Gallbladder

This is going to be one of those posts that I wish I had access to during some critical decision making times over this past year. I did more Google searching about this topic than almost anything else I have ever researched in regards to my health and when it came to personal experience stories, there wasn't much to choose from.

So this is my little contribution to the world today in the hopes that it can help someone else who may also travel down this particular path. If you're not interested in a good gallbladder story, no worries, I will get around to writing something different soon.

This story begins in February 2014. I was working at a church function one evening when all of a sudden I began to have sharp pain from the upper middle of my abdomen radiating to my right side. It was a pain I had never experienced before. I ignored the pain as my husband and I had Valentine's Day dinner plans we were looking forward to. About an hour later, we were in the car on our way to dinner and the attack was so bad, I thought I was having a heart attack. I asked him to pull into a fire station because I honestly thought I wasn't going to make it to an emergency room. That resulted in an ambulance ride to the hospital where I was told maybe I had gastritis and to follow-up with my gastroenterologist (GI). My blood work was fine, as was my heart. And nobody bothered to do an ultrasound or any other scan. Within a few hours, the pain subsided. Within 48 hours, the pain was pretty much gone.

I saw the GI doctor who was following me for other autoimmune related GI issues. I had an abdominal ultrasound done a few months before because it was discovered in 2008, during a scan for something else, that I had a cyst on my gallbladder, so I was getting ultrasounds every six months just as a safety precaution to make sure the "cyst" wasn't growing.

All was well until around May 2015. I started to notice that I was getting fuller quicker when I ate and my bra and pants seemed tighter, even though I was losing weight. I also noticed that I would get that mid-upper abdominal pain (also called epigastric pain) once in a while, sometimes after I ate and sometimes randomly. I wasn't overly concerned about it because as an autoimmune patient, there is always something wacky going on in my body. Some things end up a big deal and some just end up going away by themselves. However by June, I decided it was worth a call to my gynecologist. I was forty-four years old and the same exact age as my mom when she was diagnosed with ovarian cancer.

For those of you who don't know, ovarian cancer is known as a silent killer because the initial symptoms are so vague and includes symptoms such as bloating and feeling full quickly while eating. I went in for an exam and had a pelvic ultrasound which showed that everything in that arena looked good. Whew!

By July though, I was feeling worse and experiencing issues with nausea for the first time. I made another appointment with my GI doctor. A few days later I had lunch and got that epigastric pain that was more intense than it had been. It was right after eating a salad with grilled chicken and some salad dressing. My husband and I had plans to meet friends for an evening out so I sucked it up and went.

I was feeling a little better by the time we got to the concert and proceeded to eat a cheeseburger with a side salad and rice. Within fifteen minutes I was in the bathroom vomiting and I honestly don't remember too many times in my life where I've been in that much pain. Same pain, epigastric and radiating to my right side, under my ribs. I STILL stayed at the concert, however after throwing up again, I asked my husband to take me to the emergency room. By the time we drove the ten minutes there, the pain was out of control and extended all the way around my right side into my back.

In the emergency room, where I honestly thought I was going to die from this pain, I was given nausea medicine and several doses of narcotic pain medication, which helped tremendously. The attending doctor thought I was having gallbladder attacks and scheduled me for an abdominal ultrasound the next morning. I was given prescriptions for pain and nausea medicine, told to call my GI doctor for an appointment ASAP, and sent home.

And that's when the fun really began (note sarcastic tone here!)

I just never bounced back. I had the ultrasound, which was negative and saw the doctor. He thought it was either a stomach issue or my gallbladder. To me the gallbladder seemed more like the culprit because 1. I'm a nurse and 2. I had lost a lot of weight, which can precipitate a problem with the gallbladder and 3. I had an autoimmune disease that causes inflammation, and that includes in the gallbladder. Meanwhile, I revamped my diet even more to cut out as much fat as I could in case it was my gallbladder.

So the doctor sent me for a HIDA scan. A HIDA scan is a nuclear medicine study that evaluates how well, or not well, your gallbladder is functioning. I thought for sure that this scan would tell us either way if the problem was gallbladder related or not.


Despite the fact that I felt significantly more pain during the test, which apparently can be an indicator of gallbladder troubles, my scan came back inconclusive. Typically, the ejection fraction of the gallbladder is considered normal it it is 35% or greater. Mine was 32%. Based on that, the doctor decided that the issue was not my gallbladder. He offered me two options: to do an endoscopy which would look at my stomach or see a surgeon to get his opinion on the matter.

Well, if someone tells you that it's not your gallbladder, to me the next logical step would be to check the stomach, especially since some of the pain was in that region. So I checked myself into the hospital, got sedated, and had an upper endoscopy done. The results were normal.

A few days later I was starting to feel better, only to have that abruptly change for me by the following week. I had nausea, pain under my right ribs, pain in my mid-upper back and stomach area, my pants and bra didn't fit, and I felt pretty unwell in general. Eating was becoming more and more of an issue as oftentimes I would feel sicker after eating. I called the doctor back. He told me he didn't know where to go from here. Since people with Sjögren's syndrome can have a stomach motility disorder called gastroparesis, I asked him about that. He didn't think that was likely, but really had nothing else to offer me so I was scheduled for a gastric emptying study.

The results were normal.

He told me this at my follow-up appointment and then, all of a sudden, told me he thought the issue was my gallbladder. Like, out of the blue, despite no new information since the previous appointment where he told me it WASN'T my gallbladder.

OK, so this is where we are going to take a brief pause in the story. At this point, I knew I was in a mess and to be honest, my trust level in my GI doctor had taken a nosedive. While I respect the fact that medicine is not always an exact science, I wasn't confident enough in his diagnosis to put myself under the knife. I was so frustrated and I didn't know where to turn. Also at this time, I was being interviewed for a new part-time job. For a year and a half I had been working as a substitute school nurse, but this was my chance at a part-time school nurse position, which would be the first time I have worked on a regular basis since going out on disability in 2008. Needless to say, it was a big deal.

I decided to go ahead with the interviewing. I also discussed the situation with my super fantastic rheumatologist who also thought it was likely to be a gallbladder problem. She referred me to a GI doctor in Boston and I also set up an appointment with a general surgeon for his opinion. While gallbladder surgery these days has become routine, it would be anything but routine for me. If I had surgery, I would have to stop one of my autoimmune medications (the one that actually helps some) and I would have to consult with a hematologist because of my history of blood clots in my leg and lungs.

I ended up getting the job. The day after I started the new job, the surgeon told me he wanted to remove my gallbladder, like now. I was so upset. I felt like we'd been screwing around (for lack of a better term) all summer with this issue and now that I had this great opportunity, I felt stuck. What do I do? September and October at a new school is the absolute worst time to be out of work. So, I decided to tentatively schedule the surgery for my Thanksgiving break and meanwhile get a third opinion in Boston. I went to Boston and saw the new GI doc. He was great. He understood the dilemma I was in, but felt like because of this mysterious gallbladder cyst and my symptoms, it was worth the risk of doing the surgery. I felt like with all the information I now had, surgery was the next right step.

I never made it to Thanksgiving week.

During my pre-op appointment in October with the surgeon, it was decided that it would be to my great benefit to have the surgery sooner. So I let me boss and co-worker know and I was able to take off two weeks for the surgery and recovery.

Best decision ever.

On November 4th a had a laparoscopic cholecystectomy done. Now, as a nurse who has taken care of KIDS who have had this surgery, I really thought that two weeks off from work was overkill and that I would be up and around within a day or two. However the surgeon advised the two weeks off so that's what I did.

The surgery itself went really well. For those of you not familiar with laparoscopic surgery, it is supposed to be an easier way to remove the gallbladder, as opposed to doing a full open incision. Instead, they make four smaller incision in various spots in your abdomen and use a variety of instruments to fill the abdomen with carbon dioxide (so they can visualize all your organs and such) and disconnect and remove the gallbladder through one of the keyhole incisions.

I woke up from the anesthesia and the first thing I noticed was how much pain I was in. I was forewarned about the shoulder pain and bloating you can have post-op from the carbon dioxide gas they use to inflate your abdomen. They were not kidding! However, I also noticed that for the first time in about six months, I didn't feel like I had a baseball stuck under my ribs. I had felt bad for so long that it felt weird to not have pain in that area. And all my back pain was gone as well.

In the recovery area I really struggled with nausea and pain and despite numerous different pain medications, they just could not get my pain under control. I had great relief from a Dilaudid injection which lasted all of about an hour, but the oxycodone they gave me didn't touch me at all. However I was able to drink and eat a few bites of saltines without vomiting, after they gave me a nausea patch behind my ear.

Then next thing I know the doctor comes by and it's obvious that my pain issues are not significant enough to anyone to keep me overnight. And at that point, I was so miserable, I just wanted to get home and figure out how to manage the pain myself. The doctor told me that they sent my gallbladder to pathology, but that he didn't see any stones. However he said that part of my gallbladder WAS anatomically wrong. It was actually folded in half at the neck (Phrygian cap). He told us that while that usually doesn't cause major issues, it may have been the cause of my issues.

So my husband brought me home. I am going to preface this part of the story by saying that I know a lot of people who have had gallbladder surgery, and most of them recovered quickly. One or two did not. But, don't let my post-op experience freak you out. It was thought that a big part of the reason that my recovery was more difficult was because I waited so long to have the surgery.

My biggest recovery issue was pain. I had a lot of incisional pain at two of the sites, gas pain in the shoulder something fierce, and abdominal muscle pain like you can't even imagine. Nobody warned me about that. It felt like someone had gone into my abdomen and beat the crap out of me. It was difficult for me to even turn in bed and for the first week. I could not sleep lying down. I was slower than most in going back to eating a regular diet. The pain medication I was on was the same one I use for bad arthritis flares and it did very little to help the surgical pain. I was also trying to take as little pain meds as possible so I could restart my autoimmune medication, which cannot be mixed with narcotics.

I also experienced a lot of diarrhea the first two weeks, which is very normal, and common. I was told that some people struggle with that for quite a while, like sometimes forever, but it resolved relatively quickly for me. And, I was just completely physically wiped out from the surgery itself. Then, I ended up experiencing a very bad case of depression during the first two weeks after surgery. Like, scary depression. I wished someone had warned me about that as well. I guess it can be a result of the trauma from surgery.

But you know what? It all got better. Two weeks after surgery, I worked one full day and then a half day and then I was on break again for Thanksgiving. I probably could have used that one week off as well, but I really didn't want to miss another week of work and it was good for me to be back among the living!

Today, I am six weeks post-surgery and things are pretty good. I have had a few twinges of pain below where my gallbladder was. This is normal and I now haven't had that for about two weeks. One of my incisions wasn't healing properly and had to be reopened a little. That sucked, but now it is fully healed. I am eating well, but I have noticed that I seem to have a bit of an aversion to any foods that are fried or high in fat content. It's almost like my body is trying to tell me to reject those foods. I also eat smaller portions, but none of this is bad. The pain  is gone and the nausea, vomiting, bloating and back pain is all gone. In general, I feel more well.

I did have to go on a course of steroids, which I'm on now, to quiet down my autoimmune stuff. I made it through the recovery with no blood clots, pneumonia, etc and I am very grateful for that. I am having an issue with continued right chest/shoulder pain, which I first noticed when waking up from surgery. The surgeon has told me several times that it cannot still be trapped gas and that maybe things just need time to settle down. It has improved some since starting the steroids, so I am going to try and wait it out for now.

I did get my pathology report back during my post-op visit. In addition to the folded gallbladder, that little cyst ended up being a solid tumor which thank god was benign, and I had significant cholecystitis (inflammed and diseased gallbladder). So the end result was that my gallbladder was the cause of all my woes. And now, I never have to deal with it again.

As you can see, this was a very trying journey for me and I think there are a lot of lessons to be learned from my experience. To start with,like I say all the time, you have to advocate for yourself as a patient. I knew something wasn't right with my body and I also knew that it was something beyond my typical day-to-day health issues. And I kept at it until someone listened to me and then figured it out. Tests are not the end all-be all of diagnosing people. The fact that my gallbladder was even showing a 32% working capacity at the time of the HIDA scan is even amazing to me. And yes, I am now officially seeing a new GI doctor.

Just as importantly, everyone heals at a different pace. Keep your expectations to a minimum. Heal on your own timeline and not on the timeline of a friend or family member who may have breezed through the surgery. Make sure you have a good, solid pain control plan in place for after surgery and that you understand that no matter how common a surgery this may be, it is still a major assault on your body. While people say you can live without a gallbladder and that is true, it actually does serve the function of storing bile to break down fats. Once that's gone, your body has to completely change the way it operates. And that takes time. Not forty-eight hours or even a week. We're talking months for a complete recovery.

I would also suggest getting out of bed and walking right away and making sure you do that several times a day, no matter how bad you feel. I firmly believe that is why I didn't have any major post-op complications. The day after surgery my husband took me to a walking trail and I walked for ten minutes. Three days later, my parents drove me to a craft fair for a few minutes and the following day I was at church. Was it super hard and painful? Yes! But also very necessary.

A good heating pad is essential for the gas pain the first week or two and I can't stress enough the importance of using a pillow to splint your abdomen when you move around, cough, etc. Keep your diet light for the first few days. See if you can get someone to stay with you the night you come home from surgery and the entire following day. Most of all, be patient with yourself and know that it will get better, one day at a time.