Monday, October 5, 2015

"What I Have Learned as a Rape Survivor"

I have a new blog post ready to go up and two more turning over and over in my mind, waiting for me to furiously type them out.

All three of them are going to wait.
I came across something this morning online that I would like to share with all of you.

Two years ago this week, two young women I know were raped. Two women who have never met, both between the ages of 18-23 at the time of the incidents. Both live in separate parts of the country. Their only connection is that in the thread of social connections we all have, I know both of them.

The details of their ordeals are not for me to know and/or discuss.But here's what I can tell you:

1. 1 out of every 6 women has been the victim of an attempted or completed rape in her lifetime.
2. In 2003, 9 out of 10 rape victims were women.
3. 80% of victims are under the age of 30.
4. 44% are under 18.
5. 29% are age 12-17.

This makes me stop and pause. I have not been the victim of a sexual assault. But how many people do I know have been?

I can think of 10 just off the top of my head. And that's only people I know personally. It doesn't count all the children and adults I have cared for as a professional nurse. That number is off the charts. It also doesn't include the people in my life who have been victims and I don't know about.

More stats:

1. Approximately 4 out of 5 assaults are committed by someone known to the victim.
2. 47% of rapists are a friend or acquaintance.

Rape is not just a stranger attacking you in a dark alley type of violent crime. It is happening everywhere: in our own homes, in college dorms, in the back seats of cars, in bars, at college parties,in churches,  Women and girls (and men/boys) are being raped by not only strangers, but by their husbands, their fathers, their brothers, boyfriends, girlfriends, uncles, and priests.A woman is raped the moment she says "no" or does not give her consent.

**Statistics taken from the Rape, Abuse, and Incest National Network**

Those are the statistics, but my real reason for writing this today is to share, with her permission, a blog post written by one of the survivors I mentioned above. A woman who has taken the worst moments of her life and transformed them into an essay depicting courage, strength, and hope. The essay speaks for itself. It's only by bringing our hurt and pain from out of the shadows that we can then be a beacon for others who feel so alone. You can find Callie's post by clicking on the link for her blog here:

What I Have Learned as a Rape Survivor

Tuesday, September 15, 2015

Soul Nurturing

I'm having a soul nurturing day today. What is that you ask? Something I made up at 8am this morning when I realized that I needed some good self care today. In the past I have called them rest days. Rest days for me are days in which I promise myself that I will stay home and read or watch TV/movies. No work, housework,exercise, etc. Rest days are what enable me to get through my life living with Sjögren's.

However soul nurturing days are rest days in which I also do a few things that feed my soul. Things that I haven't been doing lately or not doing enough of. Coloring, reading, sitting outside, etc. are some examples of things that nurture my soul. For today, I decided that my priority would be that no matter how I felt physically, I would write something. Anything. It doesn't have to be good or even make sense. I just have to do it.

I miss writing. Many people have asked me if I will ever write another book about Sjögren's, or another book at all. I don't foresee that happening right now, and while I don't think I will write another book about Sjögren's, I may do something different. Who knows. What I do know is that I miss writing, especially for this blog. Going back to work on a regular basis has definitely shifted a lot of things for me, but I have to make more of an effort to get some words down on paper, or computer. Life isn't the same unless I do.

I started my soul nurturing day today by looking at my 14 year old dog, Molly, who looked all eager and happy that I was home today. It's finally cool enough to have the air conditioner off and at 8am this morning, I realized it was a beautiful morning. Typically it is my husband that walks her on the weekends, but I was overcome this morning by the feeling that it would be good for Molly and I to venture outside. I made a silent promise to myself in my head that it would be a short walk and I wouldn't overdo it; especially since I worked yesterday and still have two more days of work to get through this week.

Molly does this thing with my husband on weekend mornings. She KNOWS by his routine that he is not going to work and that she may be going outside for a walk. When my husband goes to his dresser and starts rummaging through for clothes to put on, she starts spinning herself in circles and barks. It's quite cute actually. Then when he goes to put his sneakers on, she really starts to lose it and starts running around the house. This is the same dog that oftentimes struggles to get up from a lying position because of her age and arthritis.

So this morning, I did the same routine my husband does on the weekend and sure enough, Molly started flipping out with excitement. We headed off to the rail trail and the weather was as beautiful as I expected it to be. The rail trail we go to has a lot of wildlife and vegetation and can be a very peaceful place on a weekday morning. Molly set off at her usual pace and honestly, I was struggling to keep up. It's amazing how well she can do when she is excited about her walks. Similar to how I am with my autoimmune symptoms when I am excited about something. I get a little temporary relief.

The air was crisp and cool. I watched Molly explore the various scents on the trail and my soul sang a little. I got to thinking about how it's been her and me for so long now; keeping each other company on days when the rest of the world is at work or raising children. I've been thinking about that a lot lately as she continues to show signs of aging: more grey hair, her recent loss of hearing and as of last week, urinary incontinence. I know her days are numbered and I have to say, I certainly appreciate the time I spend with her nowadays; even more so than I used to. There is something special about ushering a dog into their later years. The bond deepens. Or maybe it's just that I appreciate the bond even more.

I think that soul nurturing is something that we don't take enough time for in our fast-paced and hectic lives. We are so busy doing and going from one place to the next, that we don't often stop to think about what it is that feeds our soul or nourishes our spirit. For me, feeding or nourishing my soul often involves quiet or solitary activities, especially because I can also physically rest at the same time. But that is not always the case for me or for others. A perfect example is this Saturday. I am signed up to spend quite a bit of time on Saturday working a taco salad stand at my church for our town fair. It's something my husband and I commit to every year. It's also the only commitment I made during the month of September besides work and medical appointments because I am giving myself time to adjust to being back at work on a regular basis.

Working the taco salad stand is probably not in my best interest physically, but it certainly is a big soul nourishing activity for me. Besides volunteering where I am much needed, it gives me a chance to spend time with my community and friends in a place that has become a second home for me. To me, a soul nurturing activity is anything that reminds me of my purpose in this world and/or calms my spirit. Sometimes it is something that feeds other people's souls.

I almost always wrap up the end of my blog entries in a neat little package, but not today. My goal was to write and nurture my soul and that is what I have done. Hopefully, you also get to do a little soul nurturing this week also!

Tuesday, August 11, 2015

Making Life Work

So it's about 4pm on a weeknight and I just finished cooking part of tonight's dinner. And, that's late for me. I'm usually done earlier than 4pm, depending on how much I am cooking.

I know, it's weird.
And I am finally OK with that.

We don't eat supper that early. Usually we eat anytime between 5-6:30pm. For me, the earlier the better, but my husband does have a regular full-time job and well, he works until 5pm, at least. So it is pretty common for me to pre-cook dinner and then just nuke it when we are ready to sit down and eat. Because the reality is, if it doesn't get cooked early, there may be no supper. Except maybe cereal. Or take-out. And well, a healthy eating plan doesn't involve much of either of those. I don't know what people with chronic illnesses did before the invention of the microwave!

This is just one of the many accommodations I have had to figure out and accept since I realized that my energy levels are going to be, for the rest of my life. Pre-Sjögren's, I would have the typical mid-afternoon energy slump like everyone else, and then would bounce right back. But autoimmune disease redefines the meaning of the word fatigue. We are talking mind-numbing, body stopping, I can't take another step or blink my eye kind of exhaustion. There is oftentimes no warning and when it hits, look out. For some of us, it's a constant, pervasive kind of tiredness.

In the past, I would ignore the warning signals my body was attempting to give me. I was too busy trying to function as a person without an illness, in a busy world where chronic illness is usually not accepted or understood. In a world where the motto is "go, go, go", no matter what the price to our bodies may be. Just keep caffeinating. Just keep doing. And then I would get frustrated that my body couldn't keep up.

As the years go by, the fatigue issues has become more of an issue for me during the day. I started to notice that in the mornings, when many people with autoimmune illness are at their worst, I would be at my best. Maybe not always pain-wise, but definitely energy wise. I noticed a trend when I started working that there is a very specific time in the afternoon when I start to go downhill. When I sub (as a school nurse) at the high school, I have the most energy. Those hours are from 7:25am to 2pm. The elementary school is the most difficult for me and those hours are 8:30am to 3:15pm. I notice that I can predict a significant increase in my fatigue beginning around 2pm.

That is the first shift in energy levels. The second starts sometime after 5pm. It's all downhill from there and by 6pm, I render myself pretty useless. I am typically in my pajamas by suppertime. Nighttime activities have become harder and harder. I recently dropped out of a twelve week choir class because the 7-9pm weekly class was killing me. Evening church activities, conference calls, and meetings, for various things, have become something that I have had to rethink in terms of priorities. Up until very recently, I continued to do these things, despite the obvious detriment to my overall health.

There are some occasions where I can push past the fatigue to get myself to an evening event and even enjoy myself. I have come to realize that this is usually during an event I am really excited about such as a friend's party, concert I've really wanting to see, etc. After a little research on that, I found out that the chemical hormones that are released when someone is excited about doing something actually have a positive influence on a person's physical well being. Honestly, I think that is the only reason I can get myself to an 8pm concert! However the ramifications of those evening events are high, sometimes too high.

I have recently decided that for now, I am going to start scheduling my appointments, friend dates, etc.around what my body is telling me, as often as possible Nowadays, I wake up and am ready to roll between 6:30-7am and by 2-3pm, I'm done. Instead of pushing past those limits every single day, I've started to respect them. The problem is, the rest of the world doesn't always respect them or understand. Let's face it, in this country anyways, most social functions take place after 5pm and on weekends.

My husband and I go to a lot of concerts together and honestly, sometimes it is incredibly difficult. It will say that the concert start time is 7 or 8pm when in reality, the main act doesn't get rolling until 9pm. We recently went to an afternoon concert that started at 2pm and it was truly one of the best times I have had with him and some other friends of ours. I was alert and able to concentrate. I wasn't so focused on how exhausted I was and my pain levels was manageable. I had a lot of fun. Same thing for a recent afternoon Red Sox game, which started in the afternoon instead of the evening. A few hours difference can make or break a day for me and just as importantly, make or break the rest of the week.The running joke between my husband and I is that whenever there is an evening social event, no matter what time it starts, we have to be out of the house by 4pm so I can keep some momentum going!

Another example is from this morning. I had a close friend over for a visit. She's an early riser as well and we were eating breakfast together and chatting at my house at 9am. I can actually remember everything she said to me because that mind numbing fatigue hadn't set in yet.

I know there are going to be exceptions and I will occasionally have to make concessions. And,I don't expect the world to completely function according to my illness needs. But that being said, I have recently realized that I also have the choice to say no. Last week, I think I used the word "no" more often than in the previous six months combined. But, that's a topic for another post! The point is, I get to choose what is best for me. If it sometimes, or often, means missing out on things I would normally want to attend, then so be it. The right people will understand.

I recently said something to my husband about this. It was a Saturday night and we were home together watching TV. It was about 7pm and I couldn't hold my head up any longer. So I asked him if he would go to bed early with me. I'm not usually sleeping at 7pm, but I am resting in bed. I felt bad because it was a Saturday night and that had been happening a lot lately. And I told him that...that I felt bad he doesn't stay up late like he used to before we started dating, because he wants to spend time with me. His response was profound and basically he said that altering his lifestyle/routine to accommodate me was better than not being with me. Again, the right people will understand.

Since I've started listening to my body more and making adjustments, I have noticed that I am much more productive during that 6:30am-2pm time frame. Because I am rested. It's not a lot of time to work with and once school starts in September, it will be even much less so. But, the house has been cleaner, I'm getting more errands done, and I am spending more time at the gym. I am more tuned in to people and I am remembering more of my conversations with other people.

Is this the way I would have chosen to live my life? No. I'd rather not have Sjögren's at all. I'd rather live a life like I used to: sleeping eight hours a day and then being able to function throughout the remaining sixteen hours, without exception. But rather than being a victim, I'm working on figuring out what DOES work for me. You can do a lot of living in just seven hours a day. And honestly, many days, it's even less than that. My days may not have a lot of quantity, but they most certainly have a lot of quality.

Thursday, July 9, 2015

Boston, Saliva, and Other Musings

I woke up early this morning and did not start the day off on the best note. I was scheduled for a doctor's appointment in Boston at 10am with a new oral medicine doctor at Tufts that I saw for the first time three months ago. And as soon as I woke up, I was dreading the drive (1 1/2-2 hours each way) and the pain that was going to come with seeing her.

I started seeing her because my current rheumatologist thought she could help me with the pervasive, severe dry mouth issues I have been having since I developed Sjögren's syndrome. To be honest, I wasn't sure what she could do for me that I have not already tried. But, that first visit convinced me I was in the right place. I found out that the swollen lumps in my neck, that doctors told me may be enlarged lymph nodes, were actually blocked salivary glands. At that first visit, she used pressure/massage and suction to remove small salivary stones from my glands and gave me instructions for other measures to do at home. Honestly, it was really not a pleasant experience and very painful, but in the end, worth it, as I have noticed an increase in saliva production the past few months.What many people don't know is that these stones can get so large that the gland has to be removed and once that happens, it's all downhill from there. If you take the gland that produces saliva, much less saliva. And, much more discomfort and complications.

So I got up this morning and got ready for another trip to Tufts, knowing more discomfort would come, but realizing the importance of the appointment. In addition, it was injection day and for some reason, today's was much more painful than usual. And it got me to thinking, especially as I was getting ready to leave and throughout the drive, about how much I go through with this illness. This of course brings up the typical questions that usually arise when I am feeling a little sorry for myself such as, "Why me?" and "Why do I have to suffer so much just to get through the day?" Then I realized something huge. Huge, and sad....

I don't really remember what it was like to feel "normal."

I have been symptomatic with Sjögren's since about 2007-2008 and I don't remember what it feels like to exist in my body without pain, fatigue, dryness, or organ complications.

Kind of like when someone close to you dies. For a while you remember their scent or what it felt like to hold them or hear their voice. Then, as the years go on, some of those tactile memoires fades.

The way I move about in the world has changed dramatically because of Sjögren's. The memory of an able body that moves without effort or hesitation has left the recesses of my mind. I don't have the right words to adequately describe  the sorrow that comes with that knowledge.


My plan for today was to drive to Boston for my appointment and drive right back home. For some reason, I was under the impression that is was going to be like ninety degrees today. I got to Boston, with relative ease, which was a nice change, and it was in the high 60's. Now anyone who knows me well, knows how in love I am with the City of Boston.

Like, head over heels obsessed.

This obsession started when I began dating my husband, who is a Boston native. He can drive the streets of Boston like the maniac local he used to be. No fear and always knows how to get somewhere, eventually that is. As a native of the western part of the state, before he and I met,I enjoyed going to Boston on rare occasions, but it always felt inaccessible to me.

It was my husband who gave me the gift of Boston.

He showed, and still shows me, the points of interest, the back streets of the neighborhoods, and the places where I can soak my mind in history and culture. It was he who helped me find the courage to take the T (train) around by myself. It was he who helped me find the courage to roam the streets of the city without a map.

I keep thinking with every trip I take to Boston, and there are many, that the excitement will eventually wear off. That the city will become ordinary to me and my wanderlust of the streets and neighborhoods will fade with time.

But, it never does.


I got to my appointment and as I got out of the car, I realized how cool it was outside. And, how much it would help my mental state if I spent some time walking my favorite city. I had casual clothes on and my best sneakers, orthotics and all.It was like God was saying to me, "Here is an opportunity to feel better....take it." I called the dog sitter, who said she would be happy to go pick up my dog, so I didn't have to rush home.

I had my salivary glands suctioned out and while it was not pleasant, it was easier than last time. My guess is probably because it was done before, three months ago, On top of that, the saliva tests that were run showed that I was actually producing more saliva. She talked to me about some promising treatments coming down the line including a clinical trial she will be doing with a new biologic medication and the use of BCP, a vaccine for tuberculosis, for autoimmune disease.

The doctor was happy. I was happy.

But here is what REALLY made me happy: how I was treated at this appointment. She had a new assistant doing my salivary tests and getting me ready for the appointment. She talked to me like a person, and not as a blood pressure or a temperature to take. We talked about our summer plans.

The doctor came in. I have seen her once for an appointment and met her twice, briefly, during SSF events. Yet, she remembers important facts about me that a previous doctor I had for four years, wouldn't be able to recall if her life depended on it. Like the fact that I am a lymphoma survivor. And, that I wrote a book. And I like the fact that she can joke around with me and make me laugh. Or randomly ask one of her students why she is wearing such uncomfortable shoes.

Things that make me feel human.

Those of us with chronic illness need simple things...

We want to be taken seriously.
We want to be treated as more than an illness: as a human being.
We want things explained to us.
We want to be heard.

So I left my appointment feeling better than when I went in. After checking out some possible venue sites nearby for an upcoming SSF Sip For Sjögren's event, I went back to my car and dumped my purse, my samples from the doctor's office, and everything else except for my phone, my driver's license, a credit card, and forty dollars.

And off I went into the city I love.

I walked through Chinatown and ended up at Boston Common. I somehow found my way to my favorite gluten-free restaurant and enjoyed lunch by myself in a comfortable booth outside on Charles Street. Prime people watching spot! I meandered to the Public Garden where I sat on a bench and did more people watching.

It's a rare thing for me to walk around Boston during the summer. It's usually much too hot and sunny for my autoimmune ridden body. Not today though. It was perfect. And because it is summer, school is out, and people are on vacation, the city was bustling. The swan boats were in full swing and every corner you turned, there were street performers.

I made my way through Downtown Crossing and to Faneuil Hall and Quincy Market. It was like a party there...a dance troupe and musicians everywhere you turned.  I window shopped. I passed two large tour buses that certainly looked like they belonged to someone famous, evidenced by the increased police and security presence. The energy was high, and so was I. High from having my soul and my spirit filled by a city I have come to regard as a second home.

I guess my point in all this is to emphasize how important it is for those of us with a chronic illness to care for our spirits and our souls as much as we have to take care of our bodies. Boston is my refuge. It's probably not yours. A city may be the last place you find solace when you are feeling overwhelmed from the enormity of it all. But find something. Something that reminds you that you are more than your illness and that there is life outside of the daily drudgery of medical appointments, medications, and tests.

Something that reminds you of the beauty that comes with being alive.

Friday, June 26, 2015

Perspectives From A Heterosexual, Married Woman

It's been about six weeks since I have written and published anything and apparently it has taken a landmark change in the United States of America law to prompt me to do so.

You might be living under a rock if you haven't yet heard about today's Supreme Court decision ruling that same-sex couples may now legally be married in the United States of America. Whether you agree or disagree with the decision, the fact remains that the ruling is historic and will completely change the way this country operates from this day forward. Tax exemptions, child adoption, the list goes on and on as to how this ruling will impact our American culture.

And with it has already come the haters and the homophobes voicing their opinions on the issue. I have already read one Facebook posting that resulted in me hiding that person from my newsfeed. Not because I don't respect another person's opinion, but because I have no tolerance for bigotry or any type of discussion that uses Jesus Christ and/or religion as a weapon against love. People have a right to their freedom of speech, and I have a right to the freedom of not listening to it, whether it be family, friends, or acquaintances.

When did the right to marry who you love become important to me? I honestly cannot pinpoint an exact moment. I was raised in a very heterosexual, white, middle-class community with no exposure to anyone different than me except my friend Jeanine in elementary school. She was black. That was my first introduction to the fact that not everyone is equal. Jeanine faced obstacles that I have never dealt with and will never have to face.

I went to college at the University of Massachusetts at Amherst and all I have to say about that is, thank goodness. It was there where I learned that not every woman is attracted to or loves a man. It was there that I learned that the color of your skin does not make you less than a person, or better than anyone else for that matter. I learned that there are people who genuinely feel like they were born the wrong gender. I also learned through these people that the world is a mean,cruel place at times; much more so than I ever imagined.

Life continued on and I was fortunate enough, in my first nursing job out of college, to meet more people who were different from me, at least in their appearance and sexual orientation. But really, not that different at all. I became good friends with a woman who identified as gay. She invited me into her personal life when we became friends.I met her girlfriend. I still harbored some ignorance as to what it meant to live a lifestyle that was different than the culture I grew up in. I was ignorant as to the struggle of what it meant to fight just to be treated like a human being. I was ignorant to the struggle of discrimination based on the fact that you loved in a way that was not deemed completely acceptable by society.

Fast forward about ten years. This Catholic born and raised woman was looking for a new church home. A home where I could grow spiritually. And, I found it. On my second Sunday morning of trying to find a church home, I walked into a United Church of Christ in my town. I noticed two things: how friendly the person was who greeted me at the door and the petition that sat on a table. The petition was one to support gay marriage.

I thought to myself one thing: I was home. It didn't matter that I was a heterosexual woman. It mattered that I was in a house of God that preached love. That was the kind of church community I wanted to be a part of: one that embraced the teachings of Jesus Christ and the message that he preached. The message of love.

I have, on occasion, had Bible passages thrown at me (especially Leviticus) that supposedly condemn homosexuality. These have been from supposedly well-meaning people who want to save me from myself or from hell. Bible passages that are cited out of context and interpreted literally. The same Bible that condemns disrespectful children (who should be stoned to death), that says eating shrimp is a sin, and so on and so forth. Typically these Bible passages are quoted to me from people living in opposition to scripture passages like Mark 7:20-23 and Galatians 5:19-21. People who claim to be saving us from the sins of the world while justifying using the Bible to commit other sins (remember Westboro Baptist Church??) I have been accused of interpreting the Bible to suit my needs. Well, yes I do! My needs are that of a spiritual life based on acceptance and love:

"Owe no one anything, except to love each other, for the one who loves another has fulfilled the law." ~Romans 13:8

"With all humility and gentleness, with patience, bearing with one another in love." ~ Ephesians 4:2

I could go on and on, but I don't need to. Because in my faith, God does not promote discrimination, hatred, or bigotry. He promotes love, tolerance, and kindness. The same love and kindness I witness everyday from my heterosexual and homosexual friends, many of whom are married.

I celebrate today. I celebrate that on this day, people that I love and cherish have been granted their right to legally marry whomever they want. Many of those friends live in Massachusetts; a state that got their act together and legalized gay marriage before this law was passed. But some do not. I think of those friends today because they now have the same rights that I get to live with every single day. Their love and union can now be recognized in the eyes of the law, no matter what state they live in.

Just like it has already been recognized by God.

Author note: I am turning off the commenting feature on this post because I do not want my blog to be a forum for hate and discrimination; or be hurtful to those I care about. If you want to comment, you can start your own blog.

Thursday, May 14, 2015

When They Grow Old...

As many of you know, I have this amazing dog named Molly. She is a 13 year old (14 in two months!) basset hound/black lab mix who I adopted from a local shelter with my ex-husband back in 2003. She and I have been through it all together: serious illness, a divorce, a job loss, loss of another pet for me and serious illness, severe separation anxiety, a divorce, and the loss of a dog brother for her. Through it all, we have been constant companions.

Molly is different now than she used to be and the change happened sometime around the time I got divorced and moved into my own place with her. She used to be the hyper one, not especially affectionate, and always wanted her own way. She still wanting her own way, but the move changed her. At first, it was for the worse. The separation anxiety she experienced was bad enough that she almost hurt/killed herself trying to go through a window when she was home alone, I was renting at the time and my landlords were not appreciate of her constant howling and barking every single time I left the house. It was a hard time for me as well, because I was disabled and even getting to doctor's appointments was a struggle, because I didn't know what I would come home to.

It took a long time, but we worked it out. A year of behavior modification and psychiatric medications, as well as visits to a dog shrink at Tufts University, got us through the bad parts. Not to mention several kind and compassionate friends and family who would watch her for me during the rockiest of times.

I will be honest. I almost gave up on her during this period of time. My own physical needs were so extensive at the time that I didn't know how I was going to mange the severe separation anxiety because I obviously had to leave the house. I remember one afternoon, I came home to find her panting and in so much distress. The apartment was torn apart. I sat on the floor with her and cried. Then I google searched basset hound rescues and found the one I was going to call.

I never made the call.

And from that point on, that is when the change happened. She was completely and utterly devoted to me. It's almost like she knew...

A year later, Molly, who was about 8 years old, started to have multiple medical problems. The vet bills mounted up and the care she needed increased. The most notable incident was the day I came home from a friend's funeral to find that she couldn't get up and down the stairs and cried every time she tried to move. I still vividly remember the pain in my heart upon hearing her cry like that. It sounded like she was being tortured and I had never seen her react to pain at all, never mind as if someone was beating her.

Several days of hell ensued. Multiple vet/E.R. appointments got us nowhere. Then the day after Christmas, I realized she was almost completely paralyzed. I was able to get a hold of a supervisor in the E.R.who said she read what happened when Molly was brought in and I was to put her in a car immediately and rush her to the MSPCA Angell  Boston Animal Hospital, two hours away. Because of my own limitations at the time, I had to call a friend to get her in my car for me. We drove to Boston, during a major winter storm. I honestly thought we might not make it there in one piece. I also knew that I had to try and get her there.

She received the best possible medical care there. After a lot of tests, I was told that she had a ruptured lumbar disk in her back and that was why she was paralyzed and couldn't go to the bathroom correctly. I was told that a $5000 surgery was needed and it was thought that the surgery would help her walk again and get rid of her pain, but there were no guarantees. Even if the surgery accomplished all this, she would most likely be incontinent of urine and stool the rest of her life. I could do the surgery, or have her put to sleep. The decision was mine.

I don't know if words can adequately express the agony in making that decision. The only financial resources I had at the time was some money from the sale of my house during my first marriage. But, I was also on disability and that was the only money I had in the world to fall back on. Taking $5000 out of it could have serious consequences for me in the future. I also wanted to do what was best for Molly. I didn't want to prolong her life if it meant a life of  pain and suffering. Would I even be able to care for her long-term? The aftercare from the surgery alone would be incredibly difficult.

I remember my boyfriend at the time (my now husband) just holding me and letting me cry. I prayed a lot. I decided to go ahead with the surgery.

Molly came home several days later. She was never incontinent after the surgery and made a full recovery. The doctors were astounded. I know we were lucky. We trudged through the following few weeks of her recovery together.

The years since that day I made that difficult decision have been a blessing. I got married. Molly took really well to my new husband and once we moved into his home, she rarely ever had separation anxiety issues. She remained my constant companion. She continued to be by my side during several medical crises. She kept me company during those long days and weeks when I couldn't get out of bed and my husband was at work all day. She was my emotional healer.

It has been an interesting experience watching her age, and a precious one at that. I've never been responsible for a senior dog before and I will say, I treat it as a privilege. I watch her get grayer with each passing week. I see how drastically she has slowed down in the past year or two. No more one hour walks romping through the park. No more play dates at the dog park because it is just too much for her. We have to be vigilant about keeping on top of her pain medications and some other health issues, especially as the arthritis continues to progress from her back surgery all those years ago. I have made a commitment to her that when she is ready to go, I will not prolong her life.

I will not let her suffer.

Mother's Day passed by recently and I was so appreciate of the dog mom friends I have on Facebook who were so happy to claim themselves as dog moms with all the different memes. I never had children of my own and Molly has helped fill the maternal need that I have. I have taken some crap about that and heard all the jokes, but really, it is serious business. She instinctively knows when I am suffering, either physically or emotionally. She acts in ways that make my husband and I laugh so hard, we can make a whole evening of it. She gives and gives and gives to us every day, expecting nothing in return. Sometimes society, and the people in it, judge how we love. They say there is no love like the love between a mother and a child. Or you have not truly loved unconditionally unless you have a partner or a spouse,

No, love is love. We each get to define it for what it is and for how we feel it.

I had an opportunity this week to talk to someone about Molly. A person who doesn't know her. I explained to her that it is a love like I have never known. It's not better or worse than the love I have for my husband or say, my parents, but it is very different. It is the fierce, protective love that is demonstrated by putting her needs before my own and trust me, it has happened many times. It is a quiet, unconditional love that has no rules; no boundaries, no expectations.

It is a love of true acceptance.

Up until recently, I was sometimes afraid to love Molly over the past two years. I knew she was getting towards the end of her days and I thought the pain of the loss would be more than I could bear. A few things happened to change that. I started leaving situations out of my control in God's hands. I realized that I could make more out of the time we do have left. I would also see profiles on dog rescue sites of elderly dogs abandoned by their owners, because they could no longer care for them. Dogs who have multiple health issues. Elderly dogs who get treated in many ways similar to elderly people in this country-like they are disposable.

I made the very difficult decision this week to have Molly put under anesthesia to get her teeth cleaned. It was a difficult decision because of her age, a heart murmur and a new found problem with one of her liver tests.There was some concern though that two of her teeth were very bad and maybe causing her pain, Some of those in my life disagreed with my decision, but I was OK with that. I made my decision based on my promise to her: that I would not let her suffer, no matter what. If it was God's will to take her during the procedure, then she would go peacefully, with no more pain.

The procedure ended up being twice as long and twice as difficult as anticipated. Seven teeth had to be extracted, as well as some root work that included a bone graft. A biopsy also needed to be performed. She is now recovering well and while I am grateful, I am not really surprised. She's a fighter that one. And now, she will live whatever time she has left without pain.

And we will love her just as much as ever.

Friday, May 1, 2015

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?