For Everything There is a Season

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

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Becoming Us

September 2, 2016 / / 2 Comments
Photo Courtesy of Myers Creative Photography

To say I have been going through a dry spell with my writing would be a gross understatement. I just took a peek and saw that my last blog post was over THREE MONTHS ago. I have some suspicions about why that happened but I guess what is most important is that I started writing again while we were away in Ireland on vacation. I actually filled up an entire travel journal about our trip and on the flight home, four of the six hours was spent furiously writing in my journal. The other two hours was dedicated to watching the movie, The Departed. Love that one!

Anyways, I feel like I have my writing mojo back, at least I hope so. The words have been running into my brain faster than I can write or process them and that is always a good thing.

Over the past few days I have been acutely aware that Labor Day Weekend is coming up. Six years ago, Labor Day became my favorite holiday weekend and as the weekend approaches every year, the memories of that weekend always resurface. Many of you will recognize this story, but it’s been a few years since I’ve blogged about it and my perspective on it has shifted some, so bear with me.

In August 2009, I FINALLY moved out of the home I shared with my ex-husband. I moved into an apartment and my only roommate was my pooch, Molly. It was truly one of the best times of my life and over the course of the next year and a half of living there by myself, I personally grew in leaps and bounds. After years and years of living with an emotionally abusive alcoholic, I was on the path of reclaiming myself. I felt so free.

I dated on and off. I wasn’t looking for a serious relationship; I wanted to know what it was like to just date someone…no strings attached. For the most part, that didn’t typically go too well for me. I had also become friends with this man who lived in another state (Ohio) and after almost a year of talking on the phone, we realized we had romantic feelings for each other. We met in person, it went fairly well, but once I returned home, the shit hit the fan. I ended up hospitalized due to my Sjogren’s symptoms, he pretty told me I was too much trouble, and that was the end of that. I wasn’t going down that road again. I knew I deserved better.

That event showed me that I was done with dating. When I was having better days physically, I wanted to use my energy on spending more time with my friends and maybe doing some more volunteer work. I had also come to realize that I really didn’t need to be dating, or have a partner, to feel complete. Once you realize that, the fact that you can be happy all on your own, your life takes on a whole new meaning.

At this time in my life, I was very active in my church. I was there just about every single Sunday and I was active in a lot of volunteer work with the church. I had made a lot of friends there, most of whom also became my friends on Facebook. This is one of the nicer things about Facebook, you get to better know people you already know and see in person every week.

Right after my hospitalization, one of those friends started regularly chatting with me after church. He knew, from Facebook, that I had been in the hospital and wanted to see if I needed anything. He asked me about my writing and even though we didn’t appear, on the surface, to have much in common, we could talk comfortably in a way that made it feel like that fact didn’t matter at all.

As the summer waned on, I began to realize that I REALLY started looking forward to church more than I usually did. It was obvious to me that this man’s presence in my life meant something more to me than my other male friends from church. However, I was determined to stay off the dating scene and be this strong, independent woman who was happy being by herself. Because in all honesty, I WAS happy. And I wasn’t willing to give that up again for someone else. Too much had happened to me. Too much had been lost.

What I didn’t realize at the time was that this man from church was having feelings for me and by the end of the summer, it was obvious that the half hour we spent together talking after church just wasn’t enough. And on the Sunday of Labor Day Weekend 2010, he asked me if I wanted to take Molly and go for a walk with him the next day. I said yes because really, what harm was there in that?

So on Monday, we went for our walk.

And then proceeded to spend the entire day together.

When he dropped me off at home, I knew, with certainty, that my life would never again be the same. I knew that I needed this person in my life every day, without exception.

I make it sound easy, but in many ways, it wasn’t. I was incredibly anxious about the whole situation…about opening up my heart again and about the possibility of losing the independence I had worked so hard to achieve. But I also knew that I could not deny what I felt and while at that point I didn’t know for sure that this man felt the same way, I suspected he might. I decided he was worth the risk.

Our relationship snowballed from there. We went on that walk on Labor Day. On Columbus Day, he told me he loved me. The week later, he asked me to move in with him.

I said no.

Even though I was certain at this point I wanted to be with him forever, I wasn’t ready to leave the safe sanctuary I had built for myself. I needed more time.

I lasted until January.
Hey, what can I say?

As I’m sure you have guessed by now, this gentleman from church is my husband, Chuck.

So why am I telling this story again? Well, it is my favorite story for starters. But, it’s more than that. I’ve been thinking a lot lately about how much things have changed for me over the past six years; for Chuck as well. I’ve been thinking about a lot of the decisions we both had to make in order to be together and make this work. I’ve been thinking about our differences and about how on the surface, we would seem an unlikely match; you know, the 60’s hippie marrying the 80’s girl thing. And that’s pretty much just the tip of the iceberg.

But over the past six years, it has become obvious that our differences actually make us better partners for each other, mostly because when you get down to what really matters in a relationship, we are more similar than different.

I’ve had many people tell me how lucky I am to have Chuck in my life. Do I know how fortunate I am that a man like my husband exists in this world? Absolutely. But the thing is, luck didn’t have much to do with it at all. I do believe that God certainly did play a part in terms of us both being in the same location at the same time, specifically our church. I also believe God worked through our former pastor as he was the one that brought Chuck back to our church after many years of being away. There is no way to deny that God wanted us together.

But the rest of it? Definitely not luck either. It was a series of very conscious choices that we both made in order to be together. It was a choice on my part, as a child of God, to not settle for any man treating me in a way that was less than what I deserved. I am the one who decided what my worth was and refused to settle for anything less than that. That’s hard stuff.

I see postings on social media all the time about how terribly women are treated by their spouses. Or how terrible children are treated by their parents and vice versa.I read about how people settle for friends who view them as disposable. If you don’t hear anything else I say in this entire blog post, please hear this…

I don’t care who you are.
You are NOT disposable.
You deserve love and respect just as much as nobody and don’t EVER let anyone tell you differently.
I really wish someone had told me that when I was married to my first husband.
So I am telling YOU now.

If you have people treating you less than the precious gift God intended you to be, you need new people. Like now.

There were other conscious choices my husband and I made as well. Some of them minor, some of them much more important.

I found out long after we got together that my husband was interested in me long before I thought he was. I thought his romantic interest in me grew from the time I got out of the hospital until that Labor Day Weekend. What I didn’t realize was that he was interested in me for almost the whole time he was back in church. I’m guessing that was at least six months, if not longer. But he saw, from Facebook, that I had gotten involved with the man from Ohio and he waited.

He waited.

That’s the kind of love we all deserve.
Someone who is in it for the long haul.
Someone who thinks you are worth waiting for.

Luck certainly had nothing to do with us being together one week in 2011 when I realized I needed to make a decision about whether I was going to stay or leave Chuck. There was no fight, no argument. We didn’t even really have a disagreement. No raised voices. What we did have was a discussion that made it glaringly clear that there was an insurmountable obstacle between us, a deal breaker so to speak. Nothing that he did wrong, nothing that I did wrong….just two very different wishes for our future. There were a lot of tears that week and a lot of soul searching. There was a difficult decision to be made.

I obviously stayed.
And I’ve never looked back.

So why do I mention all this? Because I think that people look at us, use the term “lucky” in describing our relationship, and sometimes think that a relationship like ours is unattainable. I’m hear to tell you it is not. But, it is a lot of hard work. You don’t see our hard work. Well, maybe a few of you do. Our hard work is the day to day stuff that makes our marriage stronger each and every day. You won’t see it on Facebook. You will actually NEVER see a negative post, sarcastic comment, or passive-aggressive statement from one of us about the other on Facebook, or any other social media site. That is part of our covenant to each other. That is part of our hard work together.

I think that is part of why I love this time of year and looking back at the story of how our marriage came to be. It reminds me to not take the hard work for granted, It reminds me of our beginning and how special it truly was. It reminds me that your past hurts do not have to define who you are or where you go in life. And finally, it reminds me that in life, sometimes you just have to take a risk and  grab onto your happiness when it is right in front of you.

The Value of Hope

May 31, 2016 / / 0 Comments

“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.

Why?

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.”

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.

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….

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