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

Category: adversity (Page 2 of 4)

Divorcing Sjögren’s

I cannot believe I didn’t blog the entire month of April. I knew it had been a while, but I didn’t think it had been that long. I sat down this morning to do some writing and look over the blog design, as well as my Thoughts and Ramblings Facebook page, and I realized how much I have missed writing. I also realized that last month was the FIVE year anniversary of this blog!

Lots of stuff has been going on. For the past couple of months I have been working vigorously on a few things to help improve my quality of life, physically, mentally, and spiritually. I will be honest, it has been super tough. It usually is when you take an honest look at who you are, where you came from, and where you want to be headed. It has meant being rigorously honest with myself and well, let’s face it, that can really suck sometimes. However, I am now seeing the benefits of all that hard work and I am excited about the future.

It can also be tough heading into uncharted territory in regards to my health. I have had some neuropathy issues going on as well as some possible autonomic neuropathy issues. I am currently on an aggressive alternative medicine course to try and manage those symptoms and if that doesn’t work, I already have a very precise and well thought out traditional medicine plan worked out with my rheumatologist in terms of testing and figuring this all out. My guess is, it will be a combination of both alternative and traditional medicine that will help me deal with this new part of my Sjögren’s journey.

The good news is that I realized yesterday that for the first time since the autoimmune journey began around 2007/2008, this is the most confident I have ever felt with every single one of my medical providers. I have had some great doctors in the past, but at this point I feel like I am being completely heard and I am an active partner with every one of my medical providers. I have ten providers (both alternative and traditional) that I am actively seeing now and I don’t experience the anxiety I used to have. As I have talked about before, I made some difficult decisions last year about switching some of my providers in order to obtain better care and it’s nice to see that those decisions worked out for the best.

Besides the neuropathy pain and dryness issues, I am actually holding my own. My joint pain and fatigue have improved dramatically. I am certain that  the improvement in the fatigue is related to someone FINALLY listening to me and following through about my thyroid and making some medication adjustments, as well as a change in my nutrition. The thyroid is not perfectly regulated, but it is much improved. Everybody kept blaming the fatigue solely on the Sjögren’s when I have also had this longstanding thyroid issue since I had radiation to my neck a million years ago.

Besides working at my nursing job more recently, one of the other reasons I have been off the blog grid is that I have been working hard at changing the way I deal with Sjögren’s and my health. That has been a gradual process for a few years, but I have been looking at it much differently lately. I think I have blogged before that I see a therapist who has experience in dealing with chronic illnesses and we have definitely made progress.

However, things kind of got to the point a few months ago where I was just sick and tired of talking about this illness all the time. I wrote a book about it, I talk about it at appointments all the time, and I was blogging about it a lot. Thoughts and Ramblings, and its associated Facebook page, is not all about Sjögren’s or even autoimmune disease, but that’s the direction it happens to take because so many of my readers have autoimmune illnesses and it is a place to share and exchange good information about the illnesses and their treatments.

And that’s not going to change; but I was at a point where I needed a divorce from Sjögren’s for a while. We all know that it’s more like a separation rather than a divorce, and even the separation can only be partial because this illness invades every aspect of our lives. But I was able to find some separation. I stopped complaining about all my symptoms either on social media or to my family/friends. I stopped doing follow-up appointments with doctors just for the sake of having a follow-up appointment when things had been stable in that particular area. I stopped researching stuff online and lessened my visit frequency to the online Sjögren’s groups. I still took my medications and attended necessary appointments. I was still spending about two hours a day dealing with the illness and its symptoms. But two hours a day was better than four!

I decided that for now, I am not writing another Sjögren’s book.

I felt guilty at first because I know this blog, the Facebook page, and me as an individual have a lot to offer to those suffering from autoimmune illnesses. And, they (and I) will still be here. But my brain cannot be Sjögren’s focused all the time for the rest of my life. I found that when I did do this separation, it was a very good thing. I pushed myself harder, especially at work and other projects, and I found that I can be of use to this world in other ways. I also found that my anxiety lessened significantly, I wasn’t as fearful, and I could cope better with the physical challenges that did come my way.

I have been criticized in the past (even by a person with Sjögren’s), and somewhat recently, for some of the things I say and especially write, in regards to keeping a positive outlook when dealing with a chronic illness. The feedback mentioned that I may not always be realistic in how miserable this illness can be and that not every autoimmune story has a happy ending or a positive lesson to teach. Or I’m told I must have a mild case of Sjögren’s because I am upbeat. I tell them to go read my blog for the past five years and read about my journey. My attitude and disposition is inversely proportional to my physical experiences. I have a positive attitude most days, not because I don’t suffer or struggle, but because I actually get to be alive.

And loved.
And I get to love back.

I know many people may not want to hear this, but I think many times, myself included, we get ourselves so wrapped up in our illness that we don’t see any other possibilities except to be miserable or be a victim. And you know what? I get to do that sometimes. I get to be upset. But the problem is we take on our illness as our identity instead of it letting it be a part of who we are just like being a nurse or a writer is part of who I am. Rather than living my life as a victim, I want to live it as just me. Chris.Those of us with Sjögren’s do not corner the market on pain and suffering. Those of us with autoimmune diseases do not have exclusive rights to the pain and suffering in the world. We all have something, whether it is physical, emotional, or spiritual pain. It has been that realization that has enabled me to recently step out of Sjögren’s and step into helping someone else. It has enabled me to step out of Sjögren’s and step more into the world.

So what can you step into today?

Hearing God

A few weeks ago, I was going through a particularly challenging time with my health issues. I felt like I was caught in the hamster wheel of the medical world yet once again. Of course, I am always caught up in the medical world because of this chronic illness, but some times are worse than others. Usually when I am attending more than two medical appointments every week, that is a sign that the hamster wheel is going too fast. I was on and off antibiotics and larger doses of steroids for three consecutive sinus infections since May, I found out that my immune system wasn’t working properly, I was having issues with my eustachian tubes in my ears, which was causing a lot of pain and some hearing loss, and the list went on and on. I had a vacation coming up and I wasn’t even sure how I was going to pull that off….

During this time, out of the blue, I received an e-mail from the pastor of St. Paul’s Episcopal Church in Suffolk, Virginia, Rev. Keith Emerson. He had been doing an internet search on Matthew 21 from The Bible and the topic of being beaten down in life. This search brought him to a blog pot I wrote on February 26, 2012 called “Beaten Down and Other Musings.” I had been going through a particularly dark time when I had been dealing with some life-threatening medical issues including a run in with Guillain-Barre and some blood clots that were found in my lungs.

So Rev. Emerson wrote me, told me how he came upon my blog, and talked a little about the meaning of Matthew 21 and his words were profound and very timely. His words of encouragement calmed me and him mentioning that previous blog post also reminded me of how much worse things were in the past and of how strong I really am. It comforted me to know that a total stranger, somewhere in this world, took the time to care and reach out to me.

I eventually went and read Matthew 21 later that day and I also went back and read that old blog post. By doing so, I gained some perspective into my current situation.

In that moment of reading that e-mail, and in all the moments that followed, I truly believed that God was speaking to me through this stranger, in a way that was clearer to me than it had ever been before:

Keep going.
Don’t give up.
You are strong.


I did reply to his e-mail and Rev. Emerson sent me the link to his blog, the one which contains the sermon he ended up writing. He informed me about the positive effect it had on a member of his congregation. This was such a prime example of how God uses each of us in order to make a difference and how telling our stories can make an impact on the world.

I have included the sermon below. You can visit Rev. Emerson at his blog by clicking here: Check Out The Sermons

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October 6, 2014
Beaten Down/Raised Up
Rev., Dr. Keith Emerson

The tenants seized the slaves and beat one, killed another, and stoned another.  Again the vineyard owner sent other slaves, more than the first; and they treated them in the same way.” 

Here is one of my all-time favorite stories.  It will give you a chuckle, not a laugh, but it comes back to me again and again.  A man owned a bakery that was famous for two things: fabulous, fresh-baked bread and a talking parakeet. The bird repeated almost everything the baker said.  Well, as you can imagine, the shop was very popular and at different times of the day was jammed with customers.  It was not uncommon for multiple people to shout an order at the same time.  In the face of such an onslaught the baker would insist, “One at a time!  One at a time!”  One day the unthinkable happened: the parakeet escaped out the front door of the shop.  The baker, only a step or two behind, dashed outside and spied the parakeet perched on the branch of a nearby tree where it had already attracted the attention of a huge flock of mean-spirited crows.  Dozens of birds were diving at the parakeet from all directions.  It was then that the baker heard his parakeet squawk, “One at a time! One at a time!”

I suspect each of us knows what it feels like to be that parakeet.  No one gets through life without being challenged, and my experience is that challenges don’t confront us in a nice, orderly fashion. They tend to come in bunches, don’t they?  Doesn’t the old expression ‘kick a person when he is down’ hint that challenges tend to attract more challenges, hardship seems to begat more hardship, affliction has a way of multiplying, and tough times often test us with even tougher times.  At one time or another, everyone one of us has been that parakeet in the tree. Some of us are ducking for cover right now and screaming or pleading or begging with all our might, “One at a time!  One at a time!”

Earlier this week I happened upon a blog post written a few years ago by Christine, a forty-year-old woman who lives in Massachusetts. She has been diagnosed with Sjogren’s syndrome, an autoimmune disease that attacks the glands that secrete tears and saliva.  Some time after she began to deal with this, Christine developed blood clots in her lungs.  Then she was diagnosed with Guillain-Barre syndrome, where the immune system attacks nerves and leads to profound muscle weakness.  More treatment led to head pain, nausea, and increased tremors.  Add to this dealing with health insurance, which is not easy even under the best of conditions, as well as the day to day challenges we all face (her computer crashed) and it is pretty easy to understand why Christine gave her post the title “Beaten Down.”

“My body wants to feel pretty again,” she wrote.  “It feels disfigured from the bruises and the rashes.  From the hair that is starting to fall out, from the steroids and the often pale, makeup-less face that stares back at me in the mirror… the darkened eyes that used to be so much more vibrant.   My body does not understand that it is an effort to get it clean every day right now.  Will I ever be able to do an activity again for more than ten or fifteen minutes without needing to sit or lie down,” she wondered? “Will I ever be able to stoop down again without falling over or needing help to get up?  Will I ever be able to shower and wash my hair again without it being this epic event that exhausts me and makes me shake?”

Some of you have been in that place, others not far from it, and surely the rest of us can sympathize with Christine and her plight.

When Jesus tells a parable he invites us, the listeners, to locate ourselves in the story.  Which person or character are you?  We may see ourselves in multiple characters, or, as our life changes, may recognized that we have shifted from one person to another.  Where do you see yourself in today’s parable of the vineyard owner and the wicked tenants?  If things are going well then you may not identify with the servants and messengers who are treated rudely, disrespected, beaten, and/or killed. But my guess is there have been times in your life when you are they and they are you.  You don’t have to have been victimized by thugs to fill their shoes.  Sometimes life itself is the thug and it hits us with more than we can handle.  As with Christine, it may be health crisis.  It might center on a relationship.  It could involve employment.  Life has lots of ways to beat us down.

When I was younger I had a problem.  I believed that life should never do me wrong.  It wasn’t like I had never been challenged.  My father died when I was twenty.  I had the girlfriend or two who broke my heart.  I had a friend or two that betrayed me.  But I was making the path for my life laying one brick at a time and it seemed that nothing could or should get in my way.  That assumption was challenged mightily after I graduated from seminary and took my first job as an assistant to the rector of a parish.  Nothing in life had prepared me to work with a person as dysfunctional as he was.  He meddled and manipulated and basically made miserable both my professional and my personal life. To make matters worse, I was completely unequipped to deal with such a person and that is a recipe for disaster.  Eventually, I was unemployed and nearly broken by the experience.

Last week I told you about a decision I had to make: keep my word and work for a church whose job offer I had accepted, or break my word and accept a new, second offer.  That dilemma came during this time of unemployment.  I hope you remember the counsel I received from priest who had welcomed me into the Episcopal Church (“What do you want your word to be worth?”) and the letter he wrote to me (“Blessed is he who giveth his word to his brother and dissappointeth him not… even though it be to his own hindrance”). You may recall I said that letter was the most powerful and formative correspondence I have ever received.

What I shared with you last week was the first part.  Today I want to read the second half, which addressed the residue I carried with me after the pain and disappointment of my first calling:

You may feel your experiences in ministry to date warrant cynical and angry responses.  The truth is that negative experience does not exist.  There is simply experience.  The Lord is with us when we use our experience to deepen our love and to strengthen our praise.  The cross was not a “negative” experience.  On the contrary, it is for us the ultimate witness to the power of God to evoke grace in every circumstance.  I pray that you will be entirely free of the fault of resentment which will rob you of all joy and disable you as a man and therefore as a minister.  Let all clamor cease in your heart, and if that is not possible, lay that fault penitently and incessantly before God in prayer.  Resentment and self-pity are the virtuous vestments put on by unregenerate egotism for disguise. No one, of course, is deceived, except oneself. 

Congratulations on your new appointment.  Accepted with humility and offered in love, your ministry will be blessed.

Over the years the truth and wisdom of his words have been born out in my life time and again.  Life, like the ocean, is what it is. Sometimes the tide goes out, sometimes it comes in.  Some days are calm while others are rough and choppy.  There are days when everything is as you would like it to be and other days when a hidden rip current is ready to take you for a ride into the unknown (and unwanted).  More than when I was younger, I now receive moments of grace with thankfulness and humility and I am better at facing adversity with joy, faith, and patient acceptance. To quote again my friend,“The cross was not a ‘negative’ experience.  On the contrary, it is for us the ultimate witness to the power of God to evoke grace in every circumstance” and “the Lord is with us when we use our experience to deepen our love and to strengthen our praise.”   I see and sense that better now than I did years ago.

At the end of Christine’s blog post she writes this:

I was sitting in church this morning and looking around at the various people scattering the pews and wondering how many of them were feeling beaten down right at this moment?  Or wondering how many of them had maybe felt beaten down at a different time in their lives?  A time where some things did not make sense or that they felt they had endured more than their fair share of beatings so to speak.  I don’t have to know all of their stories to know that those stories are there in some form or another.  Tales of survival. Tales of people who became stronger and more compassionate people because of what they had to endure.  Journeys that were easier than mine and definitely journeys that were more difficult than mine.  People who were beaten down but yet rose up.  Again. And again.  And again.  Just like I will.


Her words remind me of the ancient Japanese proverb: “Fall seven times, stand up eight.”  “My strength didn’t come from lifting weights,” another person said.   “My strength came from lifting myself up every time I was knocked down.”

In the parable he told, Jesus is of course the son who is killed, as he himself one day will be crucified. He then quotes a rather obscure psalm that describes how the rejected stone becomes the cornerstone.  The message for us is straightforward: Life’s challenges and trials have a way, through the grace of God and the power of resurrection, to make us stronger, better, and more useful than we were before. We who gather here this morning are stones weathered and hewed by the experiences of life, yet witnesses to God’s grace to use every experience to evoke a working of grace.

2014 Boston’s Run To Remember

I am getting my stuff together for tomorrow morning’s 5K race, and it dawned on me that I never did a race report from our big weekend last week. I kept meaning to, but it was a hectic week as our kitchen is in the process of being remodeled, we are trying to get ready for a graduation party next weekend, and I was feeling lousy and ended up being treated for a sinus infection. Craziness!

So last weekend was something my husband and I had been looking forward to since last year. I found out about the 2014 Boston’s Run To Remember,which is a race held every year in honor of fallen law enforcement officers, when searching for races on the internet. The proceeds from the run go to a charity and this year monies were being given to youth programs in Boston. There were two events, the half-marathon and the 5 miler. We decided to do the 5-miler because at this point, that would be my second longest distance ever run.

Because the event fell the weekend after our anniversary and we live almost two hours away, we decided to reserve a room at the Park Plaza in Boston for the night and go to one of my favorite restaurants, The Barking Crab, for dinner on Saturday, as the race was on Sunday. We left for Boston Saturday morning and stopped at Castle Island in South Boston. It’s a neat place. There is a fort and a walking trail (HarborWalk I think it is called), as well as a park. My favorite thing to do there was stand on the edge of the harbor and watch the planes fly in and out of Logan Airport.

We checked into our hotel and decided to walk the 1.8 miles to the Seaport World Trade Center which is where the race expo was being held. I am not sure how much I mention this on my blog, but I am obsessively in love with Boston; always have been and always will be. My dream is to someday rent/own a condo in Bay Village and live there for at least a year. That is why we walked to the World Trade Center, instead of taking the subway. It was a beautiful day and the walk brought us through several different neighborhoods in Boston.

I had not been to the Seaport district before, despite our many trips to the city and I loved it. Anytime you can stand in a city and smell the ocean, it’s all good by me! This was our first running/fitness expo and I was pretty psyched for it. There were a lot of different products and I was excited to see my favorite headband company, Bondi Bands, selling their stuff. We also left there with some new chia energy bars and a pair of running sunglasses that I have been looking for. I enjoyed the different displays they had up listing the names of all the fallen officers in the entire state of Massachusetts, as that was the real reason we were there. We also picked up our bib numbers, race packet, and t-shirts. I have heard other people say that as far as running expos go, it wasn’t the best, or the biggest, but I have nothing to compare it to, so it was fun for me.

We then made our way next door to the restaurant, Whiskey Priest, and enjoyed a drink on their outside deck, overlooking the harbor. Then we walked back to our hotel. Of course by this point, I realized that my feet hurt from walking about five miles that day, which I said I was NOT going to do and by the time we were ready to leave for dinner at the Barking Crab, I could barely walk. Did I mention that I was supposed to run five miles that next morning?!? So, a cab it was! Dinner was great, as expected, and then back to the hotel we went.

The race was scheduled to start at 7am the next morning. Because of increased security measures and screening due to the Boston Marathon bombing last year, we decided to leave the hotel at 5:30am, which meant a wake-up call for me at 4:30am in order to get all my morning medical stuff done and so I could do some trigger release work on my legs before the race. We took a cab to the World Trade Center because the subway’s red line did not run that early on Sundays and we thought it best not to walk there. We did get there much too early (5:45am) and we breezed right through security. I think for next year, getting there for 6-6:15am will suffice, as that was right before the crowds started rolling in.

This was a big race for us, the biggest crowd we have run with: between 12-13,000 runners for both the half and the 5 miler. It was a younger running crowd  in general and a lot of fit looking and thin runners. I mention this because I am still a bit self-conscious about racing as an overweight runner. I definitely do not have a typical runner’s body, but lately when I start dwelling on this fact, I just keep reminding myself that I used to be 60 lbs. heavier and because of my illness, could barely leave the house most days, or even the couch. That seems to do the trick!

We started at the back of the pack which honestly ticked off my husband a little bit. He wanted to be more in the middle, because he wanted us to fully experience the crowd and he thought it would be a better experience. But I know that I am a slower runner and it is easier for me mentally to be towards the back so that I don’t feel pressured by people constantly passing me. One of my biggest race mistakes has been starting off too fast and then struggling to finish. This had to be my way in order for us to succeed.

Before the gun went off, the National Anthem was sung and Amazing Grace was played on the bagpipes in tribute to those who have died in the line of duty. It was very touching and also amazing because I have never been anywhere with 12,000+ people who have all of a sudden fallen completely silent. It was a moment I won’t forget.

We started off on our way and I have to say, it was utterly amazing. You start off on Seaport Blvd. headed towards downtown. I love the Boston skyline and here I was me, Christine Molloy, RUNNING into the Boston skyline!. So surreal. I made sure we started our pace off slow and did my typical run/walk combination. I had stopped using a timer to do run/walk intervals about a month or two ago and instead, started listening to my body. This seems to be working well for me.

The course then took us through Post Office Square, Faneuil Hall, Government Center, Charles Street, Beacon Hill, Boston Common and the Public Gardens, Chinatown, Financial District, and then back to Seaport Blvd. That was for the 5 miler. The half marathon runners separated from us at about Mile 2.5 and headed towards Storrow Drive.

I thoroughly enjoyed this race course. It helped that the weather was cooler and there was no sun, which for me and my autoimmune stuff, is a really good thing. The course was relatively flat, with about four hills. They were decent hills, but very manageable and most importantly, short! It was the coolest thing for me running through these various neighborhoods, while hearing all the spectators cheering us on. My husband ran with me and to be honest, that did help push me harder when all I wanted to do was collapse. Our goal was to finish the five miles in 1:15:00, so one hour and fifteen minutes. In this race my biggest challenge was not my muscles and joints, but rather my breathing. Allergy season has hit me harder this year than like none before, so that was a bit tough, but persevere we did!

This race was also a very well run and organized one, There were a ton of volunteers and plenty of water/Gatorade stops along the route and I was grateful for that. The course was clearly mapped out along the way and there was a ton of encouragement among the runners and spectators.

I started to really struggle around Mile 4, but I knew we were going to be turning the corner back onto Seaport Blvd. very shortly. The crowds grew bigger and I was determined to make sure I walked less and ran more. I knew we were definitely not last as there were quite a few runners behind us and I pushed harder because I always like to finish strong. By this point I was doing some running with my hands lifted up and locked behind my head because my husband said that it would help me to expand my lungs more, which it did. The great thing about races is that I have found that people cheer MORE for those towards the back, because they know it is probably harder for them.

Thank you to every single spectator that cheered for us. It made such a difference!

Then, I saw it.

A medal.

One of the runners who had already finished was wearing a medal!

And then I saw another. I didn’t realize that they were giving out finisher medal for this race. My husband and I always joke about how it will take forever for me to earn a finisher medal because in New England, they only seem to give them out for half and full marathons, unless you are a winner. And I knew it was going to take me a while, if ever, to run a half marathon.

As we ran the home stretch, I pushed even harder to earn my medal. We approached the finish line clock and I saw the time….

1:14:30.

Oh my God, we were so close to meeting our goal, there was no way we could miss it! So what’s a girl to do? Start sprinting of course…all 190 lbs. of me. Sprinting like it was nobody’s business and like I was a Kenyan runner. So did we make it?!?

Yes! Right before the clock hit 1:15:00.

Except as has happened before, I forgot one thing…

We had started in the back. Which meant that we started approximately five minutes away from the start line and actually had a better time than 1:15:00!

Official time: 1:09:48. It was the first race I have ever run a pace under a 14-15 minute mile. Race pace was 13:58 minute mile. I placed 255/274 in my age group and 175 people finished after us. A great improvement from my first race (5K) on Jan. 1st when we came in last.

After we crossed the finish line, we walked down the chute towards the water, snacks, and medals. I was bawling like a baby…quite unexpectedly actually. I was trying to make myself stop so all the medics staring at me wouldn’t think something was physically wrong, but I just couldn’t help it. The only other time I had cried after a race was when I teared up a bit after my very first race Jan. 1st; but nothing like this. I was just so overwhelmed with emotion from the morning.

I pulled it together, but of course started again when the volunteer put the medal around my neck. Yes, it was a finisher medal and not an award medal, but I didn’t care. I have been training and working so hard on this. The same woman who two years ago, was partially paralyzed from Guillain-Barre, and the same woman who has fought overwhelming physical obstacles to get to this place and this moment in time. That medal signified the overcoming of every ache, pain, and obstacle I have had in the past several years.

It was my tangible representation of perseverence and courage.
It was my “to hell with you Sjögren’s” medal.
Now, it will be my constant visual reminder of exactly what I am capable of.


30 Things You May Not Know About My Invisible Illness!

I follow a blog called Interstitial Cystitis: Catherine’s Journey and she did a blog entry based on a questionnaire she found on an invisible illness website. I read it and thought it was a great way to better inform people about what it is like to live with Sjögren’s syndrome, which is usually an invisible illness. It’s ironic because I just talked about invisible illness in my previous blog entry on scooters and Disney. So here is my questionnaire. Please feel free to copy and paste and to your own. Awareness is critical!
 
 

In honor of National Invisible Chronic Illness Awareness Week (September 9-15, 2013), they asked those of us suffering with chronic, invisible illness to answer the question: “30 Things You May Not Know About My Invisible Illness”.  Here are mine:

  1. The illness(es) I live with are: Sjögren’s syndrome. Also Factor V Leiden, Hypothyroidism, PCOS, Asthma, ?Interstitial Cystitis, Esophageal Motility Disorder
  2. I was diagnosed with it (Sjögren’s) in the year: 2011
  3. But I had symptoms since: 2007-2008
  4. The biggest adjustment I’ve had to make is: Being out of work and on disability; having to take rest periods throughout the day.
  5. Most people assume: A lot. Specifically that I must be feeling well because I “look” fine and that I am taking advantage of the system because I am young and disabled/on Medicare. 
  6. The hardest part about mornings are: Figuring out how I am going to prioritize my day.
  7. My favorite medical TV show isGrey’s Anatomy. 
  8. A gadget I couldn’t live without is: My laptop. It makes writing easier and keeps me connected to the world on days I cannot leave the house.
  9. The hardest part about nights are: Pain. My pain is usually worse at night. And not sleeping.
  10. Each day I take: At least 15 pills/supplements. And that is an improvement.
  11. Regarding alternative treatments: I have been doing this for about 10 months. I am not as convinced that alternative medicine can “cure” autoimmune illnesses but I have had significant improvement with a lot of my issues so I think alternative medicine is a critical aspect of my treatment plan.
  12. If I had to choose between an invisible illness or visible I would choose: Neither. This is a dumb question.
  13. Regarding working and career: I miss it. I miss caring for other people on a daily basis and I miss the intellectual challenge of working in the medical field. I enjoy writing but I have come to find out that I enjoyed “going” to work.
  14. People would be surprised to know: I get sick of hearing people complain sometimes. Not my friends who confide in me about something, even about minor matters. But I get sick of  people complaining on Facebook about the stupidest things. I try to sit back and remember that everyone’s issues are different and important to them. It bothers me when people are always (note that I said always) complaining about their kids. Be grateful you have them.
  15. The hardest thing to accept about my new reality has been: That I will never be cured.
  16. Something I never thought I could do with my illness that I did wasWrite a book which is currently being published!
  17. The commercials about my illnessDon’t exist! 
  18. Something I really miss doing since I was diagnosed is: Being able to just “get up and go” whenever I want; being spontaneous; working. Most of all I miss waking up and physically feeling good.
  19. It was really hard to have to give up: Some of the foods I used to enjoy; my nursing job.
  20. A new hobby I have taken up since my diagnosis is: Writing!
  21. If I could have one day of feeling normal again I would: There are SO many things! But since it is only one day, I would go skydiving.
  22. My illness has taught me: What it is like to truly physically suffer. It has taught me to be grateful and humble. It has taught me the value of true friendships and the necessity of keeping toxic, negative people out of my life. It has taught me who my real friends are. It has taught me to appreciate the everyday events in life.
  23. Want to know a secret? One thing people say that gets under my skin is: Advice on how to handle my illness. This is a fine line. I am OK when somebody mentions something to me once i.e.: a Paleo diet. But it ticks me off when they bring it up over and over again. It also upsets me beyond all reason when someone I know tries to sell me some “miracle cure”. Completely classless. Luckily, it doesn’t happen often. There are a few other things but those are the biggies.
  24. But I love it when people: Call me or check in via e-mail. Spontaneous visits. I love it when people tell me that my writing has made a difference in their life.
  25. My favorite motto, scripture, quote that gets me through tough times is: Way too many to list. If you go to my blog’s Facebook page, you will see what I mean.
  26. When someone is diagnosed I’d like to tell them: Never, ever give up.
  27. Something that has surprised me about living with an illness is: That I am happier now than before I was diagnosed.
  28. The nicest thing someone did for me when I wasn’t feeling well was: There is no one thing because so many people have done so much for me. Things that I appreciate a lot though include: offering to bring me lunch or dinner, offering a ride to an appointment, sending me regular mail (like in the mailbox!), making me laugh, talking to me about anything besides me being sick.
  29. I’m involved with Invisible Awareness Week because: I think it’s important to help raise awareness and educate others about what those of us living with invisible illness(es) are really going through each and every day.
  30. The fact that you read this list makes me feel: Hopeful!

Keep Going

There are very few people who follow my blog or who are even in my life who know the extent of the disaster my life was from about 2001 through 2009. I was in a destructive marriage with a man who was abusive, an alcoholic, had PTSD, and was just a difficult person to live with. A man who decided about two years into our marriage that he did not want children. I had distanced myself from some of my family and many of my friends. I held a job that I loved but yet found very stressful. For some of those years I was seventy-seven pounds heavier than I am now. I had a food addiction and low self-esteem. There were many times when I considered suicide and the threat was real enough that I was hospitalized several times for depression. For a period of time, I was even considered to have bipolar disorder and I was trialed on every class of psychiatric medications that existed. The diagnosis was later retracted by the same psychiatrist who diagnosed me and my mood issues were thought to be the beginning of my autoimmune disorder, coupled with significant environmental stressors. Then the physical symptoms of my autoimmune illness began.

2008-2009 found me very sick with Sjogren’s syndrome. I eventually ran out of sick time and FMLA and lost my job. On the day that my ex-husband threatened me and I thought he was going to be physically violent because he was so drunk, I told him we were done. I got divorced and lost my home. I lost one of my beloved dogs. No job, no home, no kids, no health, no marriage…no nothing.

But wait, I did have something. I had God. I had my family. I had a few friends.

I had myself.

So why am I even bothering to tell you all this six days before I marry my second husband? Because I want people to know. I want to tell anyone reading this who thinks that the only way out is through suicide that there is always a better way out. There is help out there. You can change your situation. The feeling of hopelessness you have now does not mean that things can not get better.

My upcoming marriage has stirred up a lot of emotions recently. Obviously that is due in part to the fact that I am marrying this incredible man who is my best friend and whom I love with all my heart. But the emotions are also there because over the past few weeks, I have stopped to think about where I am and how far I have come. Because at some point I stopped letting myself be a victim. I dealt with my depression and anxiety. I saw a therapist. I developed a positive attitude. An attitude that got me through some pretty dark days. I worked on my relationship with God and with myself. Step by step I made changes in my life that enabled me to be a whole person rather than the empty shell of one that I was during those years.

I still struggle with health issues. I still struggle at times with my self esteem. But at the end of the day I like the face of the person looking back at me in the mirror. Sometimes it is hard for me to think back on the past and even believe that was me. However I have to look back from time to time because those experiences have helped make me the courageous and determined individual I am today.

I am at peace.
I am happy.

So please don’t give up. You are worth more than the sum of your bad experiences. God has put you in this world for a reason. The reason may not be apparent to you now. It may never be apparent to you but I promise you, your presence in this world will make a difference to somebody.

Be strong.
Keep going.

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