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....