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Category: Sjogren’s Syndrome (Page 2 of 23)

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.

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 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!

*********************************************************************************
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.

The Road To Acceptance

February 16, 2016 / / 0 Comments
For those of you who follow my blog fairly regularly, you may remember a post I wrote about two weeks ago called Accepting Chronic Illness. It was a very personal and honest take on my current inability to fully accept having Sjögren’s syndrome and the limitations that come with such a diagnosis. If you are interested, you can read the essay by clicking HERE.

A while back, I also started following a website called The Mighty. It is a website dedicated to real life stories of people living with disabilities, disease, and mental illness. The most recent article that was published caught my attention and even more specifically, a particular quote:

“Accepting the fact that I will never get better is what has allowed me to live my life and continue to work towards my goals without waiting to ‘get better.'” – Joan Elizabeth.

Light bulb moment.
This is what I have been doing…

Waiting to get better.
And working to BE better, no matter what the obstacles are.

It’s no wonder I have fallen into such a dark hole these days. Since my symptoms first started wreaking havoc on my body in 2008, I have been in a constant battle to get better and overcome all the obstacles and challenges that get thrown at me healthwise.

I always thought this was all good stuff. Stay strong. Beat the odds. YOU CAN CONQUER ANYTHING! Sweet baby Jesus, I’m annoying myself even rereading what I just wrote here.

Don’t get me wrong; I am very well aware that there is no cure for Sjögren’s syndrome. Will there be in my lifetime? I highly doubt it. Or maybe I just don’t want to get my hopes up too high about whether there will be a cure or not. However I really did believe that if I found the right doctors, followed the right eating plan, got enough rest, and just TRIED HARD ENOUGH, that I could beat this thing into submission.

If I just prayed enough or had enough faith, maybe it would all go away.
If I didn’t let myself focus so much on my symptoms, they would go away.

I do think that a positive attitude can go a long way. I also think that the medical community is very much lacking in its treatment of autoimmune illnesses, so we do have to be our own advocates. But, just because I have done everything in my power to get better, doesn’t mean I WILL get better or even STAY better.

So the questions that then come up in my mind are: why do I think I am not good enough in my present state? Why do I think that I have to go to work every week in order to prove my worthiness as a human being? Why does the likelihood of being on disability the rest of my life make me feel like I am lesser in some way? Because if any one of you said that to me about yourselves, I would be all over you. I would tell you the truth: that no matter what your present circumstances are and no matter where you are in your medical/health journey, you are so worthy. I would tell you that your existence on this earth is not defined by a paycheck. Or by how well you can keep your house clean. Or by your inability to stay out of bed all day.

Although lately I do feel like this, I am not talking about completely giving up and resigning myself to a life in bed. But what if, I mean seriously, what if, I accepted the fact that I am not going to get completely better? What if I just accepted that there are going to be things in this life that I cannot do, such as working a part or full-time job? Or staying up past 6pm at night on a regular basis?

What if “beating my illness” is less about not having physical symptoms and more about learning to live with those symptoms more gracefully?

I’ve been waiting to get better for eight years now. My life has not stopped during that time, but everything I have accomplished, such as publishing my first book, has felt like temporary successes. You know, the goals that I work on while trying to get permanently better. And for those of you who know me well, you know that in a lot of ways, I AM better. I spend much less time in the hospital than I used to in those early years. And I guess that gave me false hope; that eventually I could make myself all better if I kept pressing on.

As the author of the quote wrote, I do have goals. For example, I have a lifetime goal of going to Ireland; something that has been on my bucket list as long as I’ve known that Ireland has existed. It’s a goal that my husband has encouraged me to pursue and would like to pursue it with me. For years, I have been postponing going, despite the fact that we already had the money set aside. I kept waiting to feel better and feel confident that I will be well when we travel.

Recently the reality hit me that if I keep waiting, I am never going to Ireland. So instead of waiting, we met with a travel agent yesterday and we are planning the trip for in six months, with trip insurance coverage of course. Instead of waiting to be well enough to go, I am trying to come to terms with the fact that despite all the precautions I can put in place for this trip, there will be times during the vacation, maybe even for the whole duration of the vacation, that I am not going to be better. It may make things a little scary for me, but I will be in Ireland, even if some of the days are in bed.

To me, acceptance is different than giving up. Giving up implies that I do not want to try anymore. It means becoming a victim of my circumstances. But acceptance? That’s about being at peace with where you are; even in the midst of the pain, the fatigue, and the uncertain future that so many of us face.

So for today, accepting my illness means that I am spending the day at home, mostly on the couch. It means sitting in a warm and cozy house, with my adorable pooch, and throwing my words out into the world, in the hopes that they will be of use to someone, somewhere. Today, acceptance means embracing what the larger dose of prednisone is doing to my body, both good and bad. It means that there is housework that won’t get done and errands that I will have to try again for tomorrow. It means being content with where I am at, in this day.

That where I am at in THIS day is more than enough.

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