For Everything There is a Season

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

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My Sjögren’s World

February 7, 2017 / / 11 Comments

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.

Life’s Challenges

December 12, 2016 / / 4 Comments

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 for…one 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.

The Jumbled Mess That We Call Life

September 21, 2016 / / 2 Comments

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.

Why?

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 time….one 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.

Leaving the “Me” Out of Facebook.

September 17, 2016 / / 0 Comments

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.

Graveyard Adventures

September 8, 2016 / / 0 Comments
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 Ancestry.com, 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 Ancestry.com and I decided that it would be worth my while to purchase a membership on Ancestry.com. 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 Ancestry.com. 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.

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