For Everything There is a Season

"In order to write about life, first you must live it." ~ Ernest Hemingway

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Comparison is the Thief of Joy

May 27, 2016 / / 0 Comments

“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.

God, Church, and People

April 14, 2016 / / 1 Comment

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?

How Sjögren’s Has Affected Me

April 1, 2016 / / 5 Comments
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….

Where Is God In All Of This?

March 31, 2016 / / 3 Comments

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.
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.

Guest Post: On Being Naked…A Man’s Perspective by Chuck Myers

March 6, 2016 / / 0 Comments

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!

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