Saturday, February 11, 2017

Chronic Illness and Fear

Photo Courtesy of Myers Creative Photography

I had this huge revelation the other day and I am sharing it with you because I would bet money that some of you have experienced very similar feelings.

The back story is as follows:

For about a month, I haven't been feeling right and in a way that feels different than "just Sjögren's." As I blogged about earlier this week, my main debilitating symptom has been fatigue. Now fatigue has been a Sjögren's symptom for me since day one, but this has been even more over the top than usual.

I recently increased one of my thyroid medications (I have hypothyroidism from radiation treatments I received for cancer in 1996.) and was wondering if my levels were totally out of whack. I had them tested earlier this week but I have not received the results because this is the one specialist I have left that just cannot get their act together enough to get me results in a prompt manner; last time it took almost four week...ridiculous!

In addition to the fatigue and thyroid checking, I was working a little more than usual and I work in a school. Every single germ known to mankind was circulating through each of the three schools I work in and next thing I know, I was down for the count about two weeks ago and instead of getting better, I got much worse with a respiratory infection, fever, the list goes on and on. And I just couldn't bounce back. I finished a round of antibiotics and now am on day four of a higher dose of prednisone for my lungs (I have autoimmune related respiratory issues). Yesterday was the first day I was able to leave the house on my own and actually participate in the world.

For a few years now I have been seeing a therapist to help me deal with having a severe chronic illness. My main reason for starting to see her was to help me find more balance between my illness life and the rest of my life, especially in my relationships. She has done that and so much more. However I had not seen her for about a month and I finally got back in to see her a few days ago. I was a bit of a mess. I was totally overwhelmed with not only my Sjögren's symptoms and issues, but the current respiratory/flu/cold junk I had as well. I was especially worried about the fact that I could barely move my body from the bed to the bathroom. It took me hours that day just to drag myself to the car to get to her office.

I was freaking out about how sick I was, more so than I thought was appropriate at the time. I mean seriously, EVERYBODY in all of western Massachusetts has been sick, I was no exception. Granted yes, I have underlying issues that can make things like a cold or flu much worse for me, but still. I was getting really nervous that I couldn't just bounce back.

So my very rational therapist pointed out to me that yes, there's a lot of illness going around but also that it takes time to recover from these colds, flus, respiratory infections, etc. And that maybe, I have been feeling so poorly over the past month because like everyone else, I have been hit hard and need whatever time it takes to heal and recover.

Now this seems like common sense and it is,and that is when I had my revelation.

I was scared.

Because I was sick for a more prolonged period of time than usual, I was scared that it wasn't just a typical "you will get over it" type of winter illness.

No, I was afraid that THIS would be my new normal.

Why would I be so panicked about such a seemingly irrational thought? Tons of people get sick in the winter.

Because in 2008, this IS what happened to me.

In 2008, I went from a fully functioning 30-something to a disabled, out-of-work 30-something in about a month. Because nobody knew what was wrong with me at the time, I truly thought I was dying. Life as I knew it completely changed in every single aspect: my job, my home, my finances, my marriage, my sense of identity, and especially how I perceived myself. I went from working as a full-time nurse to working as a full-time patient. Almost everything was taken away from me.

I realized that all this current business was all about FEAR.

I was basing my current thoughts about how I physically felt on my previous experiences, rather than on the reality of the current situation.

I don't know about the rest of you, but fear has been a common theme interwoven with having a chronic illness like Sjögren's, and the numerous other health issues that plague me as well. And I have to tell you, fear is a bitch. I have been working hard to get through those fears over the past year or two: fear of getting sicker, fear of losing my disability or health insurance, fear of becoming totally incapacitated, fear of traveling...what if something happens while we are away?? Fear of losing more friends...fear of never being able to support myself again...I could go on and on. But this realization that I was now afraid of a typical winter respiratory illness and the symptoms associated with it being my "new normal" threw me off a bit because until that moment in the therapist's office, it never dawned on me that was why I was so upset.

Here's the thing though and I wholeheartedly believe this. Once you realize your fears AND acknowledge them, you are halfway to defeating them. By recognizing them and facing them head on, we can slowly begin to master them. For me, in addition to therapy, meditation and yoga has been helpful. Meditation because it allows me to clear my head, as much as possible, of the constant stream of racing thoughts and worries I often have. Yoga because it helps me gain some control of my body, breathing, and thoughts. Yoga, shows me what my body is capable of and therefore lessens the fear of my own body.

I would be interested in hearing about what fears you may have associated with living with a chronic illness and how you deal with them, if at all.

 Feel free to comment below...

Tuesday, February 7, 2017

My Sjögren's World

Photo Courtesy of Myers Creative Photography

It's been a while since I've done a Sjögren's blog update. That is both a good thing and a bad thing. Good because it means I have been somewhat successful in putting some mental distance between me and this life altering illness, but it is also bad because I am a firm believer in connecting with other Sjögren's patients and sharing our insights into how to live as well as possible with Sjögren's.

Recently, I was asked by the Sjögren's Syndrome Foundation to be part of a group of Sjögren's patients piloting a new patient website message board. I have checked out other patient message boards, Facebook groups, etc., but I have only really found myself connected to one other particular Facebook group called Sjögren's Sisters (if you need help finding it, send me an e-mail or message me on Facebook). So, I was really curious about this new project.

I enjoy doing volunteer type stuff for the SSF, but oftentimes I run into problems with committing physically to projects. Kind of ironic, isn't it? You want to help the non-profit that does good for your illness, but your illness holds you back. But this project is time limited and I never have to leave my couch or bed to help with it. That's a win for me!

The project has linked me up with eleven or so other Sjögren's patients and we exchange information regarding living with our illness and the various challenges that come with that. It's such a great resource. We are still in the trial phase and once we go live, I will definitely share the information on this blog, so stay tuned.

The project couldn't have come at a better time for me. Sjögren's has been overwhelming me lately. My body has been overwhelming me lately. And by lately, I mean for about six months. I am experiencing so many symptoms lately and I don't even know for sure which are autoimmune related and which are not, although my guess is, most of them are related somehow, some way. Because of all the symptoms, I have had to cancel out on commitments a lot more than usual and while I can be a homebody as much as any introvert, I am spending way more time at home and in bed than I would like. Isolation can be a killer for sure.

So this is what has been going on lately in my Sjögren's world:

Last April my rheumatologist and I decided to try a medication called Orencia. For those of you who don't already know this, Sjögren's syndrome does not have a cure. It doesn't even have any treatment designed to treat it. Instead we have to depend on medications used for other autoimmune illnesses and then pray and hope that we will be lucky enough to have one of them help us.

Orencia (abatacept) is a biologic medication often used to treat RA (rheumatoid arthritis). RA and Sjögren's have several symptoms in common. For me, the symptoms I needed the most help with at the time were joint/muscle pain and fatigue. I had to get an insurance prior authorization to do the injections at home, but then we found out that my "copay" was going to be $1500/month. $1500!! We then decided that I would drive the four hour round trip to Boston every month to receive an IV infusion of Orencia instead. Cost to me: $30 for gas, tolls, parking, and water. After the first few months of doing this, my local pulmonologist agreed to oversee the infusions at my local, community hospital so thankfully, my commute has gone from four hours round trip to one hour.

I am very medication sensitive. Right after the end of my first infusion, I did have a minor reaction but since then I have had no adverse effects. This is highly unusual for me so I was determined to give this medication a fair shot.

I did notice some improvement about three or four months after starting the infusions. However in the past few months, I have been on and off the fence about how well it works for me. When I saw my rheumatologist right after Christmas, she thought it was helping because my joint swelling was pretty much gone, but I had also just finished three weeks of prednisone so it is hard to say for sure. I do think on most days, Orencia has helped with some of my joint pain, especially in my fingers, wrists, elbows, knees, and toes.

It has not helped my fatigue though and that is where I am really struggling right now. Fatigue has always been a struggle for me with this disease, but I cannot believe how bad it has gotten recently. At the moment, I do think some of it can be attributed to a respiratory infection/cold that I am trying to recover from, but it is definitely more than that. I am not exaggerating when I say that I have to mentally talk myself through even the most basic of tasks because my body just doesn't want to move. Showering, cooking, even getting from the bedroom to the bathroom to brush my teeth before bed. It's not than I am necessarily tired and want to sleep all the time. It's more like my body is stuck in quicksand or I am constantly trying to swim upstream...the entire day that I am awake. Every task and movement is me mentally rallying myself to just get up and do it; convincing myself that nothing can keep me down. But the reality is, I am down. There ARE times where I just can't do it.

The biggest problem with this?

The less I am out in the world and the less I can do, the more I struggle with my mood. It's a known fact that people with chronic illnesses have higher rates of depression and so while I am fighting every minute of the day to work through the fatigue, I am also fighting to keep myself upbeat and optimistic.

Muscle pain, dry eyes, dry mouth, nose sores, headaches, and peripheral neuropathy-like symptoms (foot pain) are a daily occurrence lately. The esophageal motility disorder that showed up a few years ago, and then went away, is showing signs that it might become an unmanageable problem again, but I can't bear the thought of making yet another doctor's appointment in Boston. So instead, I try to eat foods that are easier to swallow. This week I go to Boston to get my salivary and parotid glands expressed and a few weeks after that, ultrasound of my shoulders because for some reason, they have been getting more and more painful.

I haven't been able to sit without being in a lot of pain since August and since December, that pain has progressed to my rectum and you can only imagine what kind of havoc that has wreaked on some of my bodily functions. Originally it was thought that it was an orthopedic issue...nope. Then a gastroenterology issue...nope. Well, at least that is what I have been told. I'm not 100% convinced of either. So now it has been brought up that maybe it IS a Sjögren's related issue after all, specifically a sacral neuropathy. As I write this, I am awaiting a call back from a neurologist in Boston who specializes in these things. I don't know if he is going to have any answers. Meanwhile, I keep upping my meditation practice to try and deal with the pain and the anxiety over the fact that the tailbone issues may NEVER go away. By the way, if any of you have experience with that, I would appreciate hearing about your experiences and what helped you, if anything.

So what's a girl to do? It's like any adverse situation: you fight or you give up. I'd like to say that giving up is not an option, but we all know it is. Luckily for me, right now, it is not. And honestly, oftentimes the only reason that it is not an option is because I know how much I am loved. And I know that I still have work to do in this world; work that is important. In terms of giving up on dealing with my illness and symptoms, that is not an option either. I know that Sjögren's can be progressive and I am only 45...that's a lot of years left for things to get worse. So I need to be as on top of things as I can. I will be honest, lately I have thought about what it would be like to just stop all my medications, all the painful procedures, and all the appointments, but like I said, I am loved and I have important work to do.

For my physical body, I employ as many complementary treatments as I can afford and which work. Yoga, massage, exercise, diet, and meditation are the biggies that I can think of. Even if I sometimes feel that these treatments don't help me physically, they always help me mentally. There is always the option for me to start up yet another course of prednisone, but I am trying to avoid that as long as possible.

My answer right now is to do the best I can. I work as a substitute school nurse and when they call, I try to go into work as much as I can because at the end of the day, I am more than a patient, I am also a nurse and a pretty good one at that. Yes, it's usually hell getting through the day and yes, I feel like death after work, oftentimes for days, but I know that for me, work is a necessary part of trying to normalize my life, even if it is only for a few hours or days a month.

I try to put myself in situations where I am helping other people. I volunteer for the American Cancer Society, the Sjögren's Syndrome Foundation, and my church. Sometimes that means going for months without being able to do anything to help at all, but doing whatever little good we can do in this world is so much better than doing nothing at all.

I work very hard at trying to appreciate what I do have and what is going right in my life. It may not look how I envisioned it to look in some aspects, but in many other aspects, life has turned out so much better than I thought. So I am going to keep trudging along and no matter what, always keep the hope.

Monday, January 23, 2017

Marches, Presidents, and Women

Warning: Contains profanity.

In the seven years I have been writing this blog, I don't think I have ever written a political post, or even written one that contains a whiff of politics. But, the times are changing; Donald Trump was just elected as 45th president of this great country and boy, are people mad about that. My intention for this post is to share my opinion and viewpoint, not to change yours.

This post isn't about President Trump though. It is more about the recent Women's March that took place on January 20, 2017, the day after Trump's inauguration, in major cities all over the United States and Canada. It's also about being a woman in this country. Most importantly though, it is about standing up for your beliefs, even when you are criticized for them.

I am going to preface this by saying I did not attend the Women's March. All of my information is from people who did attend as well as both printed and online media sources. I mention this because I want the reader to know that if you are going to comment on this post or argue facts, you need to know that I did a LOT of fact checking for this post. However the reality is, media sources are not always accurate. The other reality is that if you did attend the march and something I said wasn't true in your experience, it doesn't mean what I said was necessarily false. It just means that may not have been your experience.

I consciously chose not to attend the Women's March. It wasn't because I was too busy or dealing with illness issues. There was a march held about two hours from my home. I had every opportunity to attend one.

So why didn't I?

I didn't believe in it.
It was that simple.

Now you have to know a few things about me before I delve further into my reasons for not attending the march. I am 45 years old. I am considered middle-class. The children in my immediate family (my husband's children) consist of three women and a man. The women range in age from 20-34 I believe. I have a boatload of women friends. I have a mother, aunts, goddaughters and female cousins. I am a school nurse who only works a minimal amount of hours most months due to a life-changing physical disability. I am a practicing Christian who worships at a liberal church, a United Church of Christ. I live in Massachusetts, one of the bluest states in the country. I believe in legalized marijuana, gay marriage, and that every American citizen should have the right to defend their person and property and if that involves a gun, so be it. I am anti-death penalty and pro-life. People have told me because of my beliefs, I am a walking contradiction of sorts. My reply is always, "I am just me, take it or leave it."

I personally know at least twenty people (women and men) that attended one of the marches on January 20th. And I feel the need to make it clear that I don't just know these people. Most of them are an intimate part of my life, people whom I love, cherish, and respect. If I had to classify them as liberal or conservative, I would tell you that all of my friends who attended the march, without exception, are very liberal. If you turned around and asked me the same question about myself, I would tell you that I used to call myself liberal and now, I just don't classify myself at all.

Despite the fact that I disagreed with the march, I felt no anger or animosity to those friends of mine who did attend. I viewed their photos and status updates about the march on social media. I will be honest with you, that was a bit of a struggle for me at times but I finally came to the conclusion that I was happy that people I love were participating in something they felt passionate about. I know my friends and I know where they come from; they come from a place of love.

And while I also come from a place of love, I absolutely disagree with the Women's March. However on social media, I wasn't reading about many other women disagreeing with the march. Well, not at first anyways. It took a post from a friend of a friend to make me fully realize just how very liberal my Facebook friend list is. And among the friends that are conservative, not many of them were saying too much on the topic. Ultimately, that is what drove me to write this post today. This is my attempt to let those women know that they are not alone. You may feel that the extreme left is drowning you out, but there are many of us out there who are either conservative or who tend to walk the middle of the road.

To me, the term "Women's March" is a misnomer and frankly, a bunch of crap. It was the first thing that drove me away from even considering a trip to D.C. or Boston. If I was asked to name the march, it would have had a title like, "Anti-Trump Rally" or "The Liberal March." It drives me crazy when people and/or groups pretend to be something they are not. If you want to organize a protest against Trump, go for it, but don't use the term "Women's March" to try and justify  that this march is for the good of all women. It certainly is not for the good of THIS woman.

I wonder if all the women in America understood that this Women's March had partners such as Planned Parenthood and NARAL Pro-Choice America sponsoring the event? Maybe they did know and it didn't matter to them because they are pro-choice? Originally, there were also pro-life movement partners for the march, such as New Wave Feminists and Students for Life, listed as sponsors. However right before the march, the organization, New Wave Feminists, was removed from the list of partners with the following explanation: "The women's march is pro-choice and that has been our stance since day one. We want to assure all of our partners, as well as participants, that we are pro-choice." Apparently the pro-life group was removed after it went public that they were a partner of the march. The backlash from the pro-choice movement was enough to revoke the partnership of pro-life movements.

Outside of the abortion factor, I'm not against Planned Parenthood or any other organization that acts on behalf of women, but how can you have a Women's March and exclude a large percentage of women? According to a Gallup Poll done in 2016, 46% of women in this country are pro-life. Just because someone is pro-life does not mean they agree with the comments made by president Trump during his election campaign. However, I, in good conscience, could never attend an event where a specific agenda like pro-choice is promoted when I cannot then assert my opinion about being pro-life, without being hassled. And if you go do your own Google search about what happened to pro-lifers at this march, you will see that they were indeed hassled.

And it worked out that it was the best choice for me. I think if I had gone and had to be surrounded by women wearing their "pussy hats", I would have lost my shit. Before the march, I honestly did not get the whole hat thing. I asked my husband and he had no idea. I googled it and saw article after article about these "pussy hats" being a slap in the face to President Trump.


And yes, I know about the whole drama surrounding the Trump and Billy Bush conversation. I've known about it since the news ran it ad nauseum for months. It was an incredibly stupid thing for Trump to say and I agree that it is absolutely a slap in the face to women in this country; especially when you also factor in the numerous other inappropriate comments he has made against women.

But, I still didn't get it.

So I then asked one of my girlfriends and she echoed the sentiment of many of my other girlfriends on social media the day of the march: the wearing of the "pussy hat" was a symbolic gesture to reclaim the word pussy from a misogynistic man who feels that he can get whatever he wants from a woman, whether it be because he is a man or because he is THE Donald J. Trump.

Listen, I don't know about the rest of you, but where I grew up and even now with the friends and social circle that I keep, the word pussy is NOT a word that is used in general conversation. It is a derogatory term, similar to the way "dick" is used, as a term of offense. It is a term of nastiness and degradation. Who the heck would want to reclaim a word like that? To me, the whole "pussy hat' situation didn't raise women up, it degraded them. It brought us down that much closer to Donald J. Trump.

I truly believe that we, as women, can be a mighty force to be reckoned with in the right circumstances. To me, the right circumstances are ones in which we try to understand women who think differently than us, who live differently than us, and who vote differently than us. I recently received an inbox message on Facebook from an acquaintance who verbalized to me that she was surprised that I voted for Trump in this last election. I asked her what she was talking about. She then proceeded to tell me that she saw a Facebook post of mine in which it seemed obvious that I was against the Women's March. I told her that first off, I was against the march and secondly, I did not vote for Trump. She was surprised. She was even more surprised when I told her that it was really none of her business if I had voted for him.

Why do we, as women, struggle so much to accept each other's differences? Why do we always look at each other in black and white terms when more often, we are all working in a shade of gray?

I have a dear friend, who differs from me on many political views and opinions, who posted recently on Facebook about the fact that she learns a lot from reading about, and listening to, opinions different than her own. She feels that while she is strong in her convictions, that doesn't mean that she is too above anybody else to hear them out, even if she knows she will not agree with them. That, I think, is the type of woman that I will strive to be more like...the type of woman that maybe we should all strive to be like.

Sunday, January 1, 2017

Happy 2017!!

Below is the Facebook status update I wrote this morning. It pretty much sums up my thought about embarking on a new year...

I've been thinking a lot the past few days about 2016. Believe it or not, I am not one to do that or get all hyped up about a New Year, maybe because for me, every day is a fresh start.

I've been reading a lot on FB about how horrible 2016 was and how people couldn't wait to start a new year. For me, 2016 was pretty lousy, but there were two wonderful event highlights that stood out: our Ireland trip and my Kripalu yoga retreat. When going through our wonderful moments jar last night, I got to remember that there were other great moments too. I think a lot of those memories got lost and overshadowed by all the bad.

But, there was a ton of sadness and pain, both physical and emotional. When I think about that lately though, I realize that having a year like 2016 is just a part of life. Nobody ever promised me that life would be easy or filled with solely happy moments and days. We always expect it will be though, don't we?

I got a lot out of 2016. I learned a ton about who I am and I am definitely not the same person I was on this day last year. After spending my entire life believing the statement that, "you can choose your friends, but you can't choose your family". I have learned that is no longer true for me: you CAN choose your family. I chose this past year to sever ties with a family member who brought me more stress, drama, and negativity than what was healthy for me. On the opposite end of the spectrum, I lost somebody dear to me who was not blood related, but family nonetheless. Essentially, I lost two brothers in one month. And, a sister.

I learned to say "no" and that I get to choose what is brought to my door and what/who I am willing to sacrifice my time and health for....that list got much shorter in 2016.

I learned who will be there for me when the shit hits the fan and when the days are dark and long. I had more darker days than I care to remember, especially this past fall...but those days reminded me of how strong I am. I learned what it really means for ME to be a friend and the value of what it means to truly connect with a person on all levels. I learned the importance of not taking my life for granted.

My relationship with God and my church changed. My relationship with my husband changed. My relationship with myself changed. Pretty big stuff.

I pray that each and every one of you have a 2017 that brings you nothing but happiness, peace, love, and good health. And for the times that it doesn't, I pray that it brings you the strength to get through the bad times and people by your side to help carry your through it.
Happy New Year!! <

Monday, December 12, 2016

Life's Challenges

I promised myself I would not go through another day without blogging. I noticed this past weekend that it has been almost three months since I posted anything. I have done some writing since my last blog post, but it was writing done just for me. That is one of my biggest challenges with having a blog; being an authentic writer while still not doing damage to other people in my life.

A LOT has happened since August. It's funny because I kept telling myself, "Oh this would make a great blog post" or "I should write about this." But sometimes I get like that: I just want to experience life without feeling obligated to write about it all the time.

In August, my husband and I took a dream trip to Ireland. It was a trip we had been talking about since we started dating over six years ago. We had the money saved but I kept stalling on planning it due to my health issues and my fears about being in another country with said health issues. I finally got over that and we had this amazing eleven day adventure (with prednisone on board to get me through the adventure) of Northern Ireland, Co. Donegal, Co. Mayo, Co. Galway, Co. Offaly and one of the Aran Islands. That is a topic I will still probably blog about at some point in the future!

About a week after we got home, we got SLAMMED with one crisis after another, some major, some annoying. We had some large, unexpected expenses, an unwell family member, a major family relationship conflict, and then our fifteen year old dog, Molly, ended up in the E.R. and was diagnosed with congestive heart failure. We had to make a decision and we decided to go ahead and bring her to a cardiologist for treatment. She is doing better in regards to her heart, but the side effects of the medications have made life much more challenging for my husband and I. And if you've ever had an elderly dog, you know the expense that comes with keeping them comfortable.

Molly has also had some challenges just in terms of getting old. It would appear that she has very little, if any, hearing and this past weekend we noticed that maybe her eyesight is becoming an issue. We did decide that we will likely not go any further in pursuing treatment when the next medical crisis for her comes along. We were hoping for her to get through this Christmas and with less than two weeks to go, that possibility looks very likely.

That was all in September. In October, we got news that one of my closest friends, Steve, who had been living with Stage 4 colon cancer for over two years, was getting sicker. We are an hour and a half away from him and his family, so a lot of October was spent traveling back and forth and spending as much time with him as possible.

On November 5th, my friend lost his brave battle.

That experience with him was life changing for me and it was one that requires and deserves so much more than what I am going to write here today.

A story for another time.

Then on November 24th (Thanksgiving Day), my sister-in-law, Stacie, passed away very unexpectedly. This was made more difficult by the fact that we live fourteen hours away from where she lived. She was the first person my husband ever told me about when we started dating. I knew her death was going to be earth shattering for him.

I just realized this afternoon that I still have not fully processed her death.

As I am writing this, I think it is hitting me that I have been in survival mode since August, even with the vacation. One day at a time.

Get things done.
Be present.
Just get through the next hour.
You can do it.
You can survive this.

And I did. Of course the stress contributed to a major autoimmune flare for which I am currently on a three week run of prednisone of my tougher prednisone runs, that is for sure. And, I have been having some issues with anxiety which has not been a major issue for years. But, I have people helping me with that and more importantly, I know how to help myself through that.

My attitude right now is to go into Christmas taking care of myself as much as possible. This has meant making some changes to our routine and traditions this year. It has meant a lot of tolerance and understanding from my husband towards me and from me towards my husband. The past few months have reminded me of how important it is to choose well when it comes to a life partner.  It has also reminded me of how very important it is to choose well when it comes to the people we surround ourselves with.

Isn't that mostly what life is about though? Going through life with people? In the past few months I have learned so much about myself, my husband, and who is going to be there at times when the phone rings at 8am and your friend of thirty years tells you he has about two weeks to live and you are in the car headed out of town less than an hour later, not sure of when you will be back and what your life will look like when you do get back home.

Those are the moments that define you.
And the people who loved me through it are the ones that remind me of how rich my life is.

Go love your people.
Tell them.
Show them
Put your phones away and be with them.

Wednesday, September 21, 2016

The Jumbled Mess That We Call Life

I signed a DNR  (do not resuscitate) order for my dog, Molly, yesterday...

Life has gotten so messy and complicated so quick, it's a bit staggering. One minute we're having the time of our lives in Ireland and Northern Ireland and the next, the shit is hitting the fan. It's almost like the world is playing a cruel joke on us by saying, 'Here, go have the time of your lives, but be prepared because I am going to chew you up and spit you out when you get home!"

The reality is though, the world (or God) isn't playing a cruel joke on us, that's just life: highs, lows, and everything in between, all mixed up into this jumbled mess that one minute has you laughing and the next, has you crying.

As previously mentioned, shortly after we returned home, we got some disturbing news about a member of our family. And then we got hit with some unexpected financial expenses. Can someone please tell me why dental work and car tires cost SO much?? But, my husband and I still had our heads above water.

For me, my head started rapidly dropping below water when I went to my orthopedic appointment yesterday morning and I was told there are no other options to treat a severe problem (an osteochondral defect...if you have experience with this, e-mail me!) with my left ankle, except for surgery...a surgery that has a recovery period of up to six months-three months before I can even work or do anything resembling normal day-to-day physical activity.

I signed a DNR order for my dog, Molly, yesterday...

Surgery is a nightmare for me. I had my gallbladder out last year and I cannot believe I even have to consider the thought of going through that again. To start with, I will have to come off the low-dose naltrexone I take for my Sjögren's symptoms because it cannot be mixed with narcotics. And we all know I am definitely going to need narcotics, at least short term. Secondly, there is my previous history of blood clots. I am guessing that a pending surgery will require discussion with my hematologist, especially since I will be in a cast post-op and my blood clot risk will be high. And that means blood thinners, frequent blood work, and a lot of worry for me.

So I am doing what every patient who is trying to avoid surgery is doing: postponing scheduling the surgery until I can get a second opinion. Hopefully that will come soon since walking is quite difficult at the moment.

I signed a DNR order for my dog, Molly, yesterday...

This morning's doctor appointment had me subsequently going to the hospital for multiple x-rays of my back. Right after we arrived in Ireland, I started getting episodes of numbness on one side of my upper back. That was in addition to the pain I've been getting in my tailbone and sacrum for months now. Pain that the doctor keeps telling me will eventually go away. We went back and forth about cortisone shots this morning. She wants me to get more shots, this time under fluoroscopy, so we can get deeper into the small areas around my tailbone. I want an MRI to see if we can find out if something scary is going on in there. She says no. But, she does agree to x-ray the part of my back having numbness and sends me off to physical therapy to try and straighten my crooked sacrum out.

I don't have the energy right now for physical therapy.
But, I'll go because I think it might help.

So many decisions to make.
So many complicated conversations to have.

Does anybody appreciate how hard it is to stay focused in these long medical conversations when one is feeling overwhelmed? I know some of you certainly can.

But see, I can typically handle all this medical drama. And I can handle it pretty well, with a lot of grace. I am warrioresque like that.

I'm out of grace this week.


Because I had to sign a DNR order for my dog, Molly, yesterday...

Two nights ago I was sitting on the couch with my husband watching TV. Molly came over, put her head on the couch, and looked at me in a way I haven't seen before. A look that said, "something is wrong with me."

She's fifteen years old. I was told about five years ago that she has a leaky heart valve, tricuspid valve I think it is. My husband and I both knew that she hasn't been feeling so hot recently. She gets more fatigued on her walks and the heat/humidity we have had lately here in New England has been tough on her. She was panting more than usual. But overall, she looked content and I had made a promise to her, and myself, that I would not go to extraordinary measures to keep her alive at this point.

But what exactly does "extraordinary" even mean??

Yesterday morning I woke up and noticed my husband and Molly weren't in the bedroom. I got up and my husband, Chuck, came upstairs with Molly. He had taken her down to our spare bedroom during the night to sleep because she was breathing too heavily and he was up most of the night with her. However it was one of those things where it came and went.

Because I had that doctor's appointment about my ankle I could not miss and he had to go to work, he took her to work with him. She initially looked better, but then every time he took her outside, she would be short of breath and excessively panting again.

I met him at his work after my appointment and called the vet. She was in surgery all day and I was told to bring her in the next morning or if I thought she couldn't wait, to take her to the E.R.

And that was where I spent the rest of my day.

It was hard, really hard.

They took her right in and checked her out. I got to fill out forms while I waited. I took my forms, sat down, and saw the form where I have to decide if needed, if I wanted her to have CPR. But at least they respectfully put the price of the CPR in parentheses next to the word "resuscitate." There are different prices depending on how much life support you want them to perform.

You have to be kidding me.

And then the tears came. I knew we were going to face this eventually, but no matter how much I have tried to mentally and emotionally prepare myself, my heart started to slowly shatter into little pieces. A kind looking woman handed me tissues. Her gentle act of kindness was enough to help me pull myself together long enough to check the box for DNR.

Breath, Chris, breathe.

You promised you wouldn't let her suffer or keep her alive just for your own sake.

Have I mentioned Molly has been my constant companion for twelve years and one of the two loves of my life?

About an hour later I got an update. The doctor thought her breathing was stable. She didn't see the breathing distress that my husband and I had witnessed. I told her it comes and goes. She tells me her oxygen levels and vital signs are good. Can she have my permission to start an IV, just in case? I give it to her. She also asks for permission to do a chest x-ray and some blood work. I give her that as well.

How much is too much?

When do we decide enough is enough?

I sit there and decide we need to know what is going on and what we are facing. Maybe this is simply a case of pneumonia that can be adequately treated with antibiotics. Yes, let's do the chest x-ray and labs...see what happens. Maybe even a cardiologist to further figure out what exactly is wrong so we can make her as comfortable as possible with medications. But it's OK I tell myself, it won't come to that. The doctor said her physical exam was unremarkable.

It comes to that.

Three hours later, I am brought back in. I am shown the x-rays. Her heart is enlarged, very enlarged. Possible congestive heart failure is mentioned. There are shady areas on her lungs, not tumors, but possibly pulmonary hypertension. I'm a nurse. I know what terms are bad and which ones still contain a shred of hope. To add insult to injury, the doctor took a quick peek at her heart valves. They don't look none too good either, but I am told that they only way to know for sure is to see a cardiologist and have an echocardiogram done.

How much is too much?

This doctor is amazing. She explains everything in a way that I think should be a model for every doctor and vet in this country. She is not overwhelmed with my questions. She is patient. And she is kind. She asks me about starting Molly on two different medications for her heart and I agree. That was pretty much the point of me bringing her in, to make her comfortable.

I run through my checklist in my head. I developed this checklist sometime last year when I saw how much Molly was slowing down. It's a guide of sorts to help me (us) determine when we are at the endpoint...

* Is she in pain or distress? No to the pain and the heart meds should help with the breathing distress.
* Is she eating? Yes, very well.
* Can she walk well? Yes.
* Does she enjoy something in her life that she's always done? Yes, playing with her babies, going for car rides and to the park, spending time with us, cuddling.
* Can we afford her vet bills? Yes, despite the fact they are a killer and we will have to re-prioritize some things.

So, a plan is developed and we are homeward bound, both of us much more fragile than when we arrived. As I am driving home I think about one of the owners and his dog who were in the waiting room with me. I am pretty good at reading people and the read on this man was that this dog was everything, and everyone, to him. You could see it in the way he handled him. There are infants that I haven't seen handled so gently and talked to so lovingly. If I couldn't see and was in another environment, I would have thought it was a baby he was talking to.

I overheard the man talking to another woman. I couldn't believe the amount of serious diagnoses the poor dog had. He sees NINE different specialists. Then I looked over at the dog and I actually had to watch for his breathing because otherwise you couldn't tell he was alive. He was so listless and it appeared to me, he was barely existing.

Certainly not my place to judge, but it made me realize that was not the condition I wanted Molly to live in. She sees a cardiologist Friday and I am hoping she does the echocardiogram the same day so we can get a handle on knowing what is going on and so we can have conversation and make some decisions what how far we want to take her and at what point we will say enough is enough.

That is life, one big jumbled mess. You never know what the next day, or even hour, is going to bring you. It may bring you to the most beautiful mountains and valleys of Ireland. It may bring you to the heart wrenching decision of checking off that DNR box. Sometimes, you just have to hang on tight and pray your way through the day. Or, stay present in the moment you are in and remember to do the next right thing.

Life can hit us in a way that requires us to weave through it one important decision at a moment at a time.

As I finish this up, I realize that after  a ten hour day, I am done for today. There is nothing else so urgent that it cannot be looked at tomorrow. So I am doing my next right thing for myself and curling up on the makeshift dog bed in the living room with Molly. And, I am going to hang on tight.

Saturday, September 17, 2016

Leaving the "Me" Out of Facebook.

Photo Courtesy of Myers Creative Photography

It's a BEAUTIFUL day here in New England. We woke up to chilly weather in the 40's and 50's (love it!) and the high today is supposed to be 70 degrees, with lots of sunshine. Of course today is the day that my body has hit the wall, especially my already messed up ankle. I can't complain really; I have definitely been active and enjoying my share of nice weather lately. But the second I got up and tried to put weight on my ankle this morning, I knew I was in trouble and would have to stay off it as much as possible today.

Luckily, we have a recently redone, large deck in our backyard. I improvised one of the Adirondack chairs to accommodate the back problems I have been having and I have to say, it is so peaceful and beautiful out here, I don't even mind anymore that I am restricted on my activities this weekend.

My husband and I have been on the go a lot lately since we got back from vacation on August 26th. Some of it has been fun stuff we've had planned for a while and then of course, there is work for my husband, some volunteer work for me. While my Sjögren's symptoms have been relatively quiet, I have a couple of somewhat significant medical issues going on that I have been trying to push to the background of my life until my specialist appointments, which start this week. I am more than a bit concerned about two of these issues, but it would appear that I have finally gotten a good handle on my health-related anxiety and while the issues remind me every day they are present, I have been able to carry on with my day-to-day life without that sense of impending doom.

In addition, we received some upsetting news within our family about a week after we returned from Ireland. You know, the kind of news that you never see coming until it is actually here. Possibly life changing news, but it is still unfolding, so we deal with it as each day comes. Because it is not my news to share, I will leave it at that, but I would appreciate it if you keep our family in your thoughts and prayers.

Because of all this, I have been looking for some encouragement online, mostly through social media outlets like Facebook. I follow a LOT of  Facebook groups whose mission it is to inspire optimism and all things good and encouraging, which is very necessary for me because lately, there is so much negativity on Facebook regarding politics, athletes protesting during the national anthem, racism, etc. My brain can only process so much of that stuff and it seems like since we got back from Ireland, my tolerance for the negativity, arguing, and bullshit on social media has dropped significantly. I do think these issues are important, VERY important actually, but I just don't see much good coming from all these posts, even the ones that I put out there in the world. I guess I am more of a believer in action rather than reaction and to me, action is best done out in the real world, rather than on social media.

However, over the past few days, as I have been looking for some inspiration and encouragement, it dawned on me that I am finding the most inspiration from many of my Facebook friends and some of the updates they have been posting. You guys, I am surrounded by some very strong people-some I have known my whole life, some of whom are newer in my life, and some I only know through the online world. There are all these little, and sometimes big, acts of heroism going on each and every day.

Then I got to thinking, what if I changed the way I use my personal Facebook page for a while? Personal meaning my own private account, and not my blog one. What if instead of taking about myself and MY life, I talk about all these amazing, strong people that exist around me and talk about some of the awesome things they do in THEIR lives...the things that they do and write that inspire me?

So that is what I have decided to do. I have decided that for a while, instead of talking about myself, I am going to focus on other people. The only exception will be the two photo albums I have left of Ireland to post.

Each day, my status update will be about somebody who inspires, motivates, or touches my life in some way. I won't be able to do this for everybody that positively affects my life because not all of them are on Facebook and just as importantly, some of them are very private with their personal lives and don't want to be discussed on Facebook. So, I will try to honor and respect that. I plan on only sharing details that people themselves share on Facebook. And sometimes, I probably won't share any details at all. I also have intentionally decided not to do this on my Thoughts and Ramblings blog page because that page is public, whereas my personal one is more private.

I am curious to see how this little experiment goes and if it changes anything for me personally. If it does, I will report back to you. Because let's face it,social media can definitely become an "all about me" kind of place for all of us. It's important to take care of ourselves,work on becoming a better person, and all of that stuff, but what would happen if we all spent some more time on other people? It could just make the world a better, more loving, place.

Thursday, September 8, 2016

Graveyard Adventures

Photos Courtesy of Myers Creative Photography

About fifteen or sixteen years ago, I started doing genealogy research on my dad's side of the family, surnames Molloy and Menkalis. I was mostly interested in the Molloy genealogy because I had this borderline obsession over all things Irish and wanted more than anything in the world to someday go to Ireland.

I really got into the whole genealogy research thing for a few months there. I never researched my mom's French-Canadian roots because well, my very meticulous grandmother had already done that. I had a whole packet of genealogy lines tracing all the way back to 1651 in France. I appreciated my grandmother's efforts and all the information that was passed down to to my generation, but for me, the fun part of genealogy was the process of discovering all these ancestors and relevant facts about them. I wanted to be part of that process.

After a while, I got stuck in my genealogy research. I found some information, but I couldn't get any further back. However on a website called, I had actually located a woman living in California (I live in Massachusetts) whom I was related to. Her grandmother and my grandfather (Molloys) were siblings. It was pretty exciting at the time! We were able to exchange information, but as time went on, we lost touch.

Fast forward to this past summer. I was getting ready to finally make my dream trip to Ireland and I pulled out all those genealogy notes from fifteen years ago. I did a little poking here and there online. I knew that the Molloy surname originated in County Offaly, Ireland. When we went to Ireland, we did go to Co. Offaly and visited the genealogy research center there. I was able to purchase two books that mention the Molloy surname and I got some information on how to follow up with a researcher there who may be able to help me more in my genealogy quest.

A few days ago, I came across some information on the free version of and I decided that it would be worth my while to purchase a membership on However, life has been a little hectic since we came home and I decided to wait a little longer so that I could maximize my investment for when I had more hours to spend on the website.

During that evening of searching, I was getting confused about my great-grandfather Molloy. I had some legal documents about him I had gotten back in 2001, but I realized that maybe it was for the wrong Joseph Molloy. It dawned on me that some of the documents I had may be for his son, my great uncle. The clue that tipped me off was that there was a different wife's name than the gravestone I had gone to see in Millbury, MA in 2001.

So I decided that it was worth a trip back to Millbury to check out the stone again. Maybe I had written down the wrong date or maybe there would be other information on the stone that would help me. Maybe the document place had sent me the wrong information. When I went to Google search the address for the cemetery, I came across a website called "Find A Grave". In my search for the Molloy name, I came across my grandmother's (Menkalis) grave information. I have visited her grave many times, so I know where it is, the dates on it, etc., but the important part is that HER father's name, Julian Menkalis, was listed with a link. I clicked on the link and it brought me to HIS grave page. I read it and was astounded...

My great grandfather, Julian Menkalis, was buried in a cemetery ONE TOWN OVER! Literally, about ten miles from my home. Now I had known that my grandmother was born and raised in this next town over, but I had never pursued it beyond that. Life got busy and my health needed tending to. I didn't have much time for genealogy research.

But now that I had this newfound information, I just had to get myself to this cemetery. While there was a number assigned to his grave on the website, I had no clue where it was. But let me tell you, I was certainly determined to find it.

I unexpectedly had a few extra, unplanned hours this afternoon so I drove the ten or so miles to the town next door. It was pretty much an impulsive move. I had very little water with me and I was in heavy capri jeans because the temperature had been much cooler this morning. It was cloudy and overcast when I got there, so I figured I would be good to go.

The size of the cemetery was a bit daunting. I needed a plan. At first I thought I could scan the front of the gravestones four to five rows at a time. Shortly thereafter, I realized that there were a lot of grave markers that were cement plates in the ground. It became obvious to me that I would have to go row by row, grave by grave.

When I say that there were roughly a thousand grave sites, I am not even kidding. There were probably even more than that.

About ten minutes into my search, I panicked because there were a few older stones that were unmarked. And then I noticed that there were some that were so old, I could not read them. Since I had my phone with me, I went back to that grave website and checked the birth and death dates of Julian Menkalis. Then I checked the dates on some of the headstones. Nope, my great grandfather wouldn't have a stone so old that I couldn't read it. However since he died in his thirties, leaving a wife and three young kids, he might be in an unmarked grave.

Those unmarked graves made me sad. Just a little block of cement resting on a patch of grass. No name, no dates, nothing to mark the fact that someone, who once upon a time meant something to someone else, was actually buried there.

I didn't let this stop me though. I continued on, grave by grave, at almost race walking speed, slowed down only by the rolling hills that seemed to characterize this particular cemetery.

Then the sun came out. I checked the temperature and it was now 85 degrees. And humid. I knew I was walking on thin ice. Because I have Sjogren's syndrome, extreme heat and sun can make me sick  much faster than the average person. I went back to my car, mopped my head, drank the water I had left, and let the air conditioning of the car work its magic. I did consider going home and coming back another day. I also considered possibly calling the church to find out where exactly the grave was located.

So why didn't I?

Well, that would have ruined the discovering process for me.

There's no adventure in getting the information over the phone.

I decided I would press on, with the stipulation that I had to go back to my car every twenty minutes for some air conditioning time and I would drive from one section to the next as much as possible.

I continued my search for about an hour and a half. I was so determined to find this grave! I could feel the anticipation building up in me as I passed each grave marking that was not my Lithuanian great-grandfather. What a great feeling it was going to be when I finally come across the grave marking that read, "Menkalis."

This is the part in the story where you guys are expecting me to wrap up my little adventure story with a tidy ending. Yay, she found the grave!

I did not find the grave.

As I walked by the last several headstones and ground plates, I could hardly believe it. I never expected to NOT find my great grandfather's resting place. I thought I surely would, if for no other reason than because I had put so much effort into my search.

I drove home with heavy disappointment, but realized that the search was not over yet. I could still call the church. They must have the plot information for where he is buried and maybe they could point me in the right direction. I also could possibly find out more information once I registered on The important part as that I TRIED to do it myself and in the process, got a heck of a lot of exercise; never a bad thing for me!

A little while after I got home, my mom called and I told her of my afternoon adventure. I could hear her talking to my dad in the background, telling him how I spent all that time trying to find his grandfather's grave. I had talked to my dad the other night on the phone about his Molloy relatives and my dad had told me that he didn't know a lot of information about his extended family. Part of that was because my grandparents were a lot older than the norm when he was born and a lot of his relatives passed on when he was young. He also told me that they just didn't really mingle much with his extended family.

So after my mom relayed today's adventure to my dad, she also asked him some questions about his grandfather's grave. Apparently, surprising to me, my dad HAD gone to that cemetery to visit his grandfather and also his grandmother, who was buried right next to Julian Menkalis. He said he wouldn't remember now how to find it, but he DID remember that they had an unmarked grave in the very literal sense: no blank stone, no nothing. They had no money and were literally buried underneath the grass with no marking. My dad also said that it was the church who had directed them where to go to find the gravesite all those years ago.

So the good news is, I probably walked right over my grandparents. The bad news is, I spent a lot of time today looking for something I wasn't going to find on my own.

I don't feel that it was a waste though. It was still a small adventure for me and I have to be honest, minus the sun and heat, I find cemeteries very relaxing and peaceful; I always have. Now I know that my next step needs to be contacting the church and hopefully, I will find the graves of my great-grandmother and grandfather. But this time, I am going to bring something along with me. I'm not sure what yet.

But something.

Some type of item that marks the spots where their remains lie.

Something that states that somebody important lies beneath those spots.

Something that says, "these are my people"

My immigrant Polish and Lithuanian ancestors.

Friday, September 2, 2016

Becoming Us

Photo Courtesy of Myers Creative Photography

To say I have been going through a dry spell with my writing would be a gross understatement. I just took a peek and saw that my last blog post was over THREE MONTHS ago. I have some suspicions about why that happened but I guess what is most important is that I started writing again while we were away in Ireland on vacation. I actually filled up an entire travel journal about our trip and on the flight home, four of the six hours was spent furiously writing in my journal. The other two hours was dedicated to watching the movie, The Departed. Love that one!

Anyways, I feel like I have my writing mojo back, at least I hope so. The words have been running into my brain faster than I can write or process them and that is always a good thing.

Over the past few days I have been acutely aware that Labor Day Weekend is coming up. Six years ago, Labor Day became my favorite holiday weekend and as the weekend approaches every year, the memories of that weekend always resurface. Many of you will recognize this story, but it's been a few years since I've blogged about it and my perspective on it has shifted some, so bear with me.

In August 2009, I FINALLY moved out of the home I shared with my ex-husband. I moved into an apartment and my only roommate was my pooch, Molly. It was truly one of the best times of my life and over the course of the next year and a half of living there by myself, I personally grew in leaps and bounds. After years and years of living with an emotionally abusive alcoholic, I was on the path of reclaiming myself. I felt so free.

I dated on and off. I wasn't looking for a serious relationship; I wanted to know what it was like to just date strings attached. For the most part, that didn't typically go too well for me. I had also become friends with this man who lived in another state (Ohio) and after almost a year of talking on the phone, we realized we had romantic feelings for each other. We met in person, it went fairly well, but once I returned home, the shit hit the fan. I ended up hospitalized due to my Sjogren's symptoms, he pretty told me I was too much trouble, and that was the end of that. I wasn't going down that road again. I knew I deserved better.

That event showed me that I was done with dating. When I was having better days physically, I wanted to use my energy on spending more time with my friends and maybe doing some more volunteer work. I had also come to realize that I really didn't need to be dating, or have a partner, to feel complete. Once you realize that, the fact that you can be happy all on your own, your life takes on a whole new meaning.

At this time in my life, I was very active in my church. I was there just about every single Sunday and I was active in a lot of volunteer work with the church. I had made a lot of friends there, most of whom also became my friends on Facebook. This is one of the nicer things about Facebook, you get to better know people you already know and see in person every week.

Right after my hospitalization, one of those friends started regularly chatting with me after church. He knew, from Facebook, that I had been in the hospital and wanted to see if I needed anything. He asked me about my writing and even though we didn't appear, on the surface, to have much in common, we could talk comfortably in a way that made it feel like that fact didn't matter at all.

As the summer waned on, I began to realize that I REALLY started looking forward to church more than I usually did. It was obvious to me that this man's presence in my life meant something more to me than my other male friends from church. However, I was determined to stay off the dating scene and be this strong, independent woman who was happy being by herself. Because in all honesty, I WAS happy. And I wasn't willing to give that up again for someone else. Too much had happened to me. Too much had been lost.

What I didn't realize at the time was that this man from church was having feelings for me and by the end of the summer, it was obvious that the half hour we spent together talking after church just wasn't enough. And on the Sunday of Labor Day Weekend 2010, he asked me if I wanted to take Molly and go for a walk with him the next day. I said yes because really, what harm was there in that?

So on Monday, we went for our walk.

And then proceeded to spend the entire day together.

When he dropped me off at home, I knew, with certainty, that my life would never again be the same. I knew that I needed this person in my life every day, without exception.

I make it sound easy, but in many ways, it wasn't. I was incredibly anxious about the whole situation...about opening up my heart again and about the possibility of losing the independence I had worked so hard to achieve. But I also knew that I could not deny what I felt and while at that point I didn't know for sure that this man felt the same way, I suspected he might. I decided he was worth the risk.

Our relationship snowballed from there. We went on that walk on Labor Day. On Columbus Day, he told me he loved me. The week later, he asked me to move in with him.

I said no.

Even though I was certain at this point I wanted to be with him forever, I wasn't ready to leave the safe sanctuary I had built for myself. I needed more time.

I lasted until January.
Hey, what can I say?

As I'm sure you have guessed by now, this gentleman from church is my husband, Chuck.

So why am I telling this story again? Well, it is my favorite story for starters. But, it's more than that. I've been thinking a lot lately about how much things have changed for me over the past six years; for Chuck as well. I've been thinking about a lot of the decisions we both had to make in order to be together and make this work. I've been thinking about our differences and about how on the surface, we would seem an unlikely match; you know, the 60's hippie marrying the 80's girl thing. And that's pretty much just the tip of the iceberg.

But over the past six years, it has become obvious that our differences actually make us better partners for each other, mostly because when you get down to what really matters in a relationship, we are more similar than different.

I've had many people tell me how lucky I am to have Chuck in my life. Do I know how fortunate I am that a man like my husband exists in this world? Absolutely. But the thing is, luck didn't have much to do with it at all. I do believe that God certainly did play a part in terms of us both being in the same location at the same time, specifically our church. I also believe God worked through our former pastor as he was the one that brought Chuck back to our church after many years of being away. There is no way to deny that God wanted us together.

But the rest of it? Definitely not luck either. It was a series of very conscious choices that we both made in order to be together. It was a choice on my part, as a child of God, to not settle for any man treating me in a way that was less than what I deserved. I am the one who decided what my worth was and refused to settle for anything less than that. That's hard stuff.

I see postings on social media all the time about how terribly women are treated by their spouses. Or how terrible children are treated by their parents and vice versa.I read about how people settle for friends who view them as disposable. If you don't hear anything else I say in this entire blog post, please hear this...

I don't care who you are.
You are NOT disposable.
You deserve love and respect just as much as nobody and don't EVER let anyone tell you differently.
I really wish someone had told me that when I was married to my first husband.
So I am telling YOU now.

If you have people treating you less than the precious gift God intended you to be, you need new people. Like now.

There were other conscious choices my husband and I made as well. Some of them minor, some of them much more important.

I found out long after we got together that my husband was interested in me long before I thought he was. I thought his romantic interest in me grew from the time I got out of the hospital until that Labor Day Weekend. What I didn't realize was that he was interested in me for almost the whole time he was back in church. I'm guessing that was at least six months, if not longer. But he saw, from Facebook, that I had gotten involved with the man from Ohio and he waited.

He waited.

That's the kind of love we all deserve.
Someone who is in it for the long haul.
Someone who thinks you are worth waiting for.

Luck certainly had nothing to do with us being together one week in 2011 when I realized I needed to make a decision about whether I was going to stay or leave Chuck. There was no fight, no argument. We didn't even really have a disagreement. No raised voices. What we did have was a discussion that made it glaringly clear that there was an insurmountable obstacle between us, a deal breaker so to speak. Nothing that he did wrong, nothing that I did wrong....just two very different wishes for our future. There were a lot of tears that week and a lot of soul searching. There was a difficult decision to be made.

I obviously stayed.
And I've never looked back.

So why do I mention all this? Because I think that people look at us, use the term "lucky" in describing our relationship, and sometimes think that a relationship like ours is unattainable. I'm hear to tell you it is not. But, it is a lot of hard work. You don't see our hard work. Well, maybe a few of you do. Our hard work is the day to day stuff that makes our marriage stronger each and every day. You won't see it on Facebook. You will actually NEVER see a negative post, sarcastic comment, or passive-aggressive statement from one of us about the other on Facebook, or any other social media site. That is part of our covenant to each other. That is part of our hard work together.

I think that is part of why I love this time of year and looking back at the story of how our marriage came to be. It reminds me to not take the hard work for granted, It reminds me of our beginning and how special it truly was. It reminds me that your past hurts do not have to define who you are or where you go in life. And finally, it reminds me that in life, sometimes you just have to take a risk and  grab onto your happiness when it is right in front of you.

Tuesday, May 31, 2016

The Value of Hope

"There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something tomorrow." ~ Orison Swett Marden

I've been thinking a lot lately about the concept of hope.

That can be a bit of a dangerous thing when you live with a chronic illness that has no cure, and very little in the way of successful treatment.

But, I have a trifecta of hope happening in my life right now; a process that started sometime in April. This is ironic actually as Spring is a time of rebirth and renewal....a reawakening, if you will.

My trifecta is a combination of three things that I am doing to try and help alleviate my autoimmune symptoms, caused by Sjögren's syndrome, and therefore increase the quality of my life. I have to be honest, my quality of life was truly beginning to take a nosedive prior to April and after about a year of this happening, it was time for some more drastic measure to be taken, both on my part and the part of my medical team.

The first part of this trifecta was starting a new biologic medication called Orencia (abatacept) on April 6th. It is not a medication for Sjögren's specifically, but rather one often used to treat rheumatoid arthritis. However, there has been some research published and patient reports that Orencia has helped some patients with Sjögren's syndrome, especially the symptoms of joint pain and fatigue.

The second part is that I am in the middle of (literally) an eight week Mindfulness Based Stress Reduction (MBSR) course, a program that was founded at UMASS Medical Center in Worcester, MA and since its induction, has helped thousands of patients with a variety of chronic conditions. This is something I have been considering doing for about a year or so and after the third person suggested it to me, I did my research and decided to go for it.

The third is a dramatic change in my diet, which started May 23rd. I embarked on a twelve day whole food, plant based detox cleanse with the sole purpose of trying to settle down my physical symptoms. That will end in a few days and I don't know exactly where I will go from there, but I imagine that I will continue some version of it since I have already seen benefits.

I did not plan on doing all three of these healing and potentially life-changing things at the same time and to be honest, I would never have planned it this way. I have to travel to Boston for the Orencia infusions, the MBSR class takes three hours on Thursdays, as well as at least an hour a day of "homework" and the diet change? Of Lordy, between the shopping and cooking, that has become VERY time consuming for me. But, I did not control the schedule of when all three happened so I jumped in, trusting that God knew what he is doing.

All three of these things bring a lot of hope to the table for me, something I haven't had a whole heck of a lot of recently. I know for certain that the dietary changes will help me and the MBSR class cannot hurt me, and my guess is I will experience some benefits from that as well. The Orencia is a crap shoot at best, however I have already experienced some positive effects from it. The real question for me is how much will these life changes help my physical symptoms, both individually and collectively? What if the changes help me so much that I am able to gain most, if not all, of my previous functioning back?

I know, that's a tall order and honestly, any improvement would be welcome.

But, I was scared.

I was scared to hope.


Because I have been down that road before. You cannot even imagine (well, some of you can) how difficult it can be to put so much hope into something and not have it work out or have it work out just for a brief time before it is snatched away. And what you are left with is pain, more medical appointments, and disappointment. It can be challenging and heartbreaking all at the same time.

But what is the alternative? Not trying? Not taking advantage of the possibilities that are being offered to you? For me, that is not an option. So onward I went, starting with that first infusion in April.

The problem was, even though I was trying, I kept telling myself over and over that I wasn't going to get my hopes up...not about the Orencia, or the class, or the dietary changes...none of it.

It didn't take long though for me to realize that my self-defeating attitude regarding all of this was not exactly helpful. I then found a journal I kept during my Manifestation Workshop at Kripalu in February. The cover said, "Hope anchors the soul"" and I then saw something I had written. It was so powerful.

"I want to manifest good health and wellness."


For me, part of manifesting good health and wellness HAS to be having hope. Hope drives me. It is hope that pushes me to spend a whole day venturing into Boston for my Orencia treatment. It is the thing that help drive me through the frustration of learning how to meditate with my MBSR class. Hope is the motivation I need, when I am tired and in pain, to spend two hours in the kitchen prepping and cooking wholesome, nutritious meals.

Hope is everything.

Now, I have opened up my heart and allowed myself to hope, for many things: good health, a less disabling future, and a body that can get me through the day. Maybe I will get some of this, none of it, maybe all of it, who knows. What I do know is that throughout this ongoing process of healing, I will not give up the thought that tomorrow will be better.

Friday, May 27, 2016

Comparison is the Thief of Joy

"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.

Thursday, April 14, 2016

God, Church, and People

As I've posted about recently, I've been struggling in the God department lately, more specifically, about where God is in all the messes that take place in this world. On a broader scale, I am talking about ISIS, innocent people being blown up, and children going hungry and being abused. On a more personal scale, my thoughts immediately go to good people I care about going through one crisis after another, without getting a break. And of course, my own struggles with constantly having to deal with daily medical issues and never seeming to get a reprieve from all of that.

My spiritual life has been even more challenged lately as I have found myself, along with my husband, in a dilemma about my (our) church life, something that has been an integral part of not only our individual lives, but our marriage as well.

When I first started going to church regularly and consistently as an adult, sometime in 2005, it was church that brought me closer to God. And I became dependent on that. But over time and especially in the last several years, I have come to learn that my relationship with God is not, and should not be, church dependent. Don't get me wrong, I am a BIG church advocate. I think churches can be a beacon of hope, strength, and love in a community. I could spend the next several hours discussing with you all the reasons why, if you believe in God, it would be helpful for you to be a part of a church community.

But here's the other side of it. What happens when church is not going right for you? The reasons can be many, or few. What then becomes of your relationship with God?

The past couple of months have left me with more questions than answers about God, church, and people in general, but this week, I hear God speaking to me. Sometimes I just need to shut up long enough to hear him.

I have been hearing God speak to me through the voices of others and it is starting to shift my perspective about where God is in all of the messes in the world. For example, I see God working through a friend of mine as she makes solid preparations for the future of her and her children for after her husband leaves this world. I see her strength and determination in carrying forward, despite this monumental loss that she is facing.

I hear God in her husband's voice, my friend; a friend who has been with me for almost thirty years. We have have had the best of days together, him and I, and also some tough ones, the toughest ones being most recently. But it was God who created this amazing person in my life; one who has brought me so much laughter and love. I feel God in the authenticity of my conversations with this friend...the conversations which now include how much time he may have left and how him and his wife are handling THAT conversation with their young daughters.

Most recently, I heard God in a different friend's voice as well. Her perspective on where God is in all the messes in her own life was the opposite of where mine has been up until recently. She saw the sequence of difficult events in her life as God supporting her and preparing her for her challenges. I'm making it sound more simple than she probably meant it, but I think you know what I am trying to say. Her message wasn't that God was being punishing or didn't care, but rather he was putting into place what she needed to get through it all and continue forward.

While listening to her speak, I could truly see where she felt God was in all her messes. It lightened me. It also made me wonder why we, as Christians, are not having these conversations more...the conversations about God. Are we too busy? Or are we so busy just trying to survive it all?

And when I say talking about God, I don't mean regurgitating scripture over and over again, tossing words around in attempts to get others to subscribe to our way of believing. Or using God as a weapon to bash whatever group of people we feel are violating some Biblical law that man has misconstrued for his own use.

No. I am talking about conversations where we share with each other, on an intimate level. Share our struggles and our strengths. Our weaknesses and our victories. How we see God working, or even not working, in our lives. What our challenges are in leading a good and faith-filled life. What roll does church play in our spiritual life? How important is it? What makes us spiritually fulfilled? To me, those are some of the most important questions.

What are the important questions for you?

Friday, April 1, 2016

How Sjögren's Has Affected Me

Photo courtesy of the Sjögren's Syndrome Foundation

Today is April 1st, the first day of Sjögren's Syndrome Awareness Month. Despite the fact that Sjögren's is one of the most common autoimmune disorders out there, most people have not heard of it and many doctors do not know how to appropriately treat the illness or its complications.

The Sjögren's Syndrome Foundation put out a blog post today which included an updated human diagram of the different systems that Sjögren's affects. Oftentimes, Sjögren's is looked at as solely an illness that causes dry mouth and dry eyes. To start with, the dryness that accompanies Sjögren's is no small matter. Dry eyes can cause serious ocular complications, including vision loss and dry mouth can cause difficulties with swallowing and rampant tooth decay. In addition to dry eyes and dry mouth, Sjögren's can adversely affect just about every system in the body, as illustrated in the SSF's diagram above.

I have been doing this blog for a while now, so I don't remember if I posted about my specific Sjögren's symptoms, but I seem to think that I never have done so. This blog entry is going to be about that...the Sjögren's related symptoms that I have had to deal with since my journey with this illness began. Please don't panic! It does not mean you will have the same symptoms or even have it as severely as I do. But, it is important to be as informed as possible. Only YOU  are going to be the person driving the bus towards wellness.

* Dry eyes: An eye doctor picked up on this well before I even noticed my eyes were dry. I believe it was probably my very first symptom and it occurred well before the disabling symptoms occurred in 2008. The first eye doctor I had picked up on the dryness during a routine eye exam and I completely blew off his suggestion to start using eye drops regularly. That was, until the dryness became uncomfortable and once that happened, there was no going back. I have experienced mild corneal abrasions from the dryness. The abrasions have not been a problem since I started working with my new eye doctor. He diagnosed me with Meibomian Gland Dysfunction which subsequently changed the treatment I was doing. The dry eyes are still a daily issue for me, but the severity has lessened some.

* Joint and muscle pain: If you've read my story in my book Tales From the Dry Side, you will know that joint pain was the first major symptoms I had that became disabling. Muscle pain followed a few years later. My joint pain often occurs in my finger and toe joints, wrists, elbows, shoulders, ankles, and knees. The muscle pain is widespread The intensity varies dramatically and is oftentimes activity dependent. I have also noticed a trend in stress and diet exacerbating my pain levels. The treatments I have tried are numerous and if you want details, please feel free to e-mail me.

* Respiratory difficulties: This is a tough one for me to describe. It was the second debilitating symptom I had which started in 2008. I call it asthma just for simplicity, but it is not asthma in the traditional sense. My pulmonologist has also called it reactive airway disease. I have had abnormal pulmonary function tests and at times have required inhalers that are typically used for COPD. This particular issues has improved dramatically for me in the past few years, since I started getting allergy shots actually.

* Reflux and esophageal motility disorder: I have had some serious bouts of reflux since getting sick. At one point, in 2012, I was vomiting all of my food and ended up hospitalized. After more tests than I care to recount, I was told that I have an esophageal motility disorder called nutcracker esophagus which means the muscles in my esophagus don't contract and relax the way they should. Medication helped tremendously for a while and I was able to wean off of it. Once in a while, it acts up on a much smaller scale. The reflux is being controlled with alternative medicine supplements.

* Interstitial cystitis (IC): I get angry about this one. I suffered with what felt like UTI pain and symptoms on and off for almost a year before somebody recognized I had IC. I kept getting tested for a UTI and then was told the symptoms were in my head. It took a third doctor (a urology specialist) to diagnose me correctly. I had a procedure done and changed my diet and I have been stable for several years now.

* Fatigue: If I could get rid of one symptom for the rest of my life, this is it; even more so than the pain issues. Because no matter how much rest I get, if I am not on steroids, I am chronically exhausted. I do have a little control over the fatigue in terms of getting a lot of rest and/or watching my stress, but it never really goes away. There are just varying degrees of it. And, it really affects my day-to-day life, my ability to work, and my relationships.

* Dry mouth: I didn't develop this symptoms until I had been sick for a few years. Once I did, my mouth went haywire. The biggest difference in the severity of my dry mouth has been seeing an oral medicine doctor.

* Salivary stones/blockage/infection: Due to the lack of salivary flow and changes in the consistency of my saliva, due to Sjögren's, I have developed salivary stones. I also get swelling. On one occasion, I got a major blockage and infection on one side that required steroids and antibiotics to clear. The oral medicine doctors suctions out the stones every few months, which has helped me significantly.

* Neuropathy: This is something I am currently in the process of being tested for. I would say for me, it is the second worse symptom, after fatigue. Peripheral neuropathy causes nerve pain and itching in my legs and feet, sometimes making walking a huge challenge. I have also been experiencing dizziness from changing positions and from standing more than a few minutes. I have come very close to passing out more times than I can count. I'm also experiencing dramatic temperature swings. This may all be related to something called autonomic neuropathy. The jury is still out on that. But all the evidence is pointing that way.

* Dry nose: This has resulted in painful sores and staph infections in my nose.

* Dry skin: Probably the lest dramatic of my symptoms, but annoying enough to merit a mention!

* Raynauds: This is a lovely disorder that occurs when your hands and/or feet experience severe cold intolerance and this impacts your circulation. The hands/feet undergo color changes and the process can be quite painful.

* Sinus inflammation/infections

* Brain fog/memory loss: I had testing done several years ago that showed I had memory loss. Since then, I have been working hard on my memory issues, but that, as well as the brain fog, is still very much an issue at times.

* Rashes/photosensitivity: The frequent rashes have diminished over the years, but I still have a really bad time in the sun. When my husband and I were in Florida a few years ago, despite using SPF 50 liberally, I got a horrible sun-related rash that took days to get under control.

The above list included the symptoms that are related to Sjögren's. There have also been a few other issues that MAY have been related to Sjögren's, but no definitive relationship can be proven:

* Gallbladder disease: Obviously, many people without Sjögren's have gallbladder disease and I had several risk factors associated with it. However my observation and research has shown me that gallbladder issues are very common in people with Sjögren's.

In addition to that, I have been experiencing a lot of stomach upset and diarrhea over the last few months. I had my gallbladder out in November of last year. I did recover but I don't know if these GI issues are related to the gallbladder surgery or if they are autoimmune related. I will be honest, I have so much going on right now medically, it's on the back burner.

* Guillain-Barre syndrome (GB): This happened to me in 2012 and it was seriously one of the scariest things in the world to go through. I was fortunate enough to have a mild case. There is no correlation between Sjögren's and Guillain-Barre, but GB is also an autoimmune disease.

* Hypothyroidism: My doctor cannot determine if my hypothyroidism is related to radiation treatments I had years and years ago, or if it is autoimmune in nature.

* Vocal Cord Dysfunction: I don't know of a correlation between this and Sjögren's, but I do know many Sjögren's patients who have experienced vocal cord dysfunction.

* Migraines: I never had migraines until I had other Sjögren's symptoms, so why knows!

I would be interested in hearing about what Sjögren's symptoms you or your loved one have experienced. Please feel free to comment below....