For Everything There is a Season

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

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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!

The Manifestation Workshop: On Being Human

February 29, 2016 / / 3 Comments
“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.

Guest Post by Christina Griffin: Ehlers-Danlos Syndrome

February 23, 2016 / / 3 Comments

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!

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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.

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