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Showing posts from 2015

Saying Goodbye To My Gallbladder

This is going to be one of those posts that I wish I had access to during some critical decision making times over this past year. I did more Google searching about this topic than almost anything else I have ever researched in regards to my health and when it came to personal experience stories, there wasn't much to choose from.


So this is my little contribution to the world today in the hopes that it can help someone else who may also travel down this particular path. If you're not interested in a good gallbladder story, no worries, I will get around to writing something different soon.


This story begins in February 2014. I was working at a church function one evening when all of a sudden I began to have sharp pain from the upper middle of my abdomen radiating to my right side. It was a pain I had never experienced before. I ignored the pain as my husband and I had Valentine's Day dinner plans we were looking forward to. About an hour later, we were in the car on our way …

Dressing My Outsides

For all kinds of physical and emotional reasons, I was having a really tough morning yesterday before church. And without me saying a word, my husband, who was already up, looked at my face and tucked himself into this sliver of leftover room on my side of the bed. And he held me. And I sobbed while telling him my woes. In my head, the next step was to huddle in my self-made nest for the rest of the day, away from the difficulties of the world and away from the struggles it takes these days for my body to function in the world.


My husband is very good at respecting my space and knows that sometimes I just have to do what I have to do to get by and care for myself. Apparently yesterday was the exception. Or rather, maybe yesterday, he knew better than I did what would work for me and wallowing in bed all day wasn't it. He reminded me how much I would enjoy seeing our friends at church. I thought that some quality God time somewhere other than in my house was probably a good idea.


Work and Chronic Illness

I posted a status update on my personal Facebook page this morning and I realized later on in the morning that I might gain some insight by posting it here as well.


I've been wanting to do some blog posts about work and chronic illness and I've wanted to write a little about my new job, so I guess this is as good a place to start as any.


As I've mentioned previously, I am in the homestretch of a very challenging and difficult month schedule wise. I am really hoping, that things will settle down a little for me once we go into November. I am definitely not getting the recovery time I physically need right now.


That got me to thinking this morning. I typically work two days a week for a total of fourteen hours. I also sometimes work a third day at my substitute school nurse job although lately that is rare. I am working three days this week. I honestly don't understand how people with chronic illnesses like Sjogren's (or any other illness) work full-time. I say that…

Low Dose Naltrexone

This is not going to be a lengthy entry. It's one I wasn't even planning on writing, but I wanted to share something with you all. I get e-mails from time to time from readers asking about how things are going for me with using low-dose naltrexone (LDN). My LDN posts also typically get the most hits.

I think LDN is one of those tricky treatment options where you don't know exactly how much it is helping until you aren't taking it. It is also tricky in regards to managing the side effect related insomnia that comes with it.

Well, it took me the better part of two years or so, but I was able to get around the sleep issue just by titrating my dose up slowly over the course of about eight months.

Then I came off it.
And it's been hell. Friggin' nightmare actually.

Long story short, I had to stop taking it because I need gallbladder surgery. Because I started a new job the exact same week I was told this, I am putting the surgery off. They wanted me to have it in ea…

Grounding My Soul

My life has been caught up in a whirlwind of busyness lately, probably the most I have seen in years. When the month of October descended on me, much quicker than I planned by the way, I realized that I have something going on every single weekday for the entire month, with the exception of one solitary Monday. I would like to point out that I NEVER let that happen, if for no other reason than I physically cannot handle it.


I looked at my October schedule, staring at me as if to taunt me and say "there's no way you can do this" and I made an honest attempt to cut some scheduled things out of it. Except for one problem...


I couldn't.


Those weekdays are packed with either work, a ridiculous amount of medical appointments, school nurse licensing classes, and one charity event that I just cannot miss. On many days, I am double booked and know that I am going to miss some things that I really wanted to attend, like my husband's yearly client event at work. With one e…

Plantar Fasciitis and Extracorporeal Pulse Activation Technology: Part One

I first noticed the pain around May of 2014. I had been running/walking for about six months. Running/walking was new to me and I had fallen heads over heels in love with it. Well, maybe not with the running itself, but more the high I got when I ran. And when I completed a race. I figured that the pain I had in my heels was from overuse so I cut back on my mileage.


I also have a chronic illness called Sjögren's syndrome that can cause inflammation and issues with joints, tendons, and muscles. I had recently weaned off prednisone for the first time in a very long time and I thought my body just needed to adjust to functioning without it. But by July 2014, I was having major difficulties with being on my feet.


I saw a podiatrist in August and was diagnosed with bilateral plantar fasciitis with my right foot pain being worse than my left. I started with conservative treatments such as stretching and ice. If you have ever had plantar fasciitis (PF), you know that it can be a relentl…

"What I Have Learned as a Rape Survivor"

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

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

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


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

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

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

Soul Nurturing

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


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


I miss writing. Many people have asked me if I will ever write another book about Sjögren's, or another book at all. I don't f…

Making Life Work

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


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


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


This is just one of the many accommodations I have had to figure out and accept since I realized that my energy levels are going to be unpredictable.…

Boston, Saliva, and Other Musings

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


I started seeing her because my current rheumatologist thought she could help me with the pervasive, severe dry mouth issues I have been having since I developed Sjögren's syndrome. To be honest, I wasn't sure what she could do for me that I have not already tried. But, that first visit convinced me I was in the right place. I found out that the swollen lumps in my neck, that doctors told me may be enlarged lymph nodes, were actually blocked salivary glands. At that first visit, she used pressure/massage and suction to remove small salivary stones from my glands and gave me instructions for other measures to do at home. Ho…

Perspectives From A Heterosexual, Married Woman

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


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


And with it has already come the haters and the homophobes voicing their opinions on the issue. I have already read one Facebook posting that resulted in me hiding that person from my newsfeed. Not because I don't respect another person's opinion, but because I have no tolerance for bigotry or any type of discussion that uses Jesus …

When They Grow Old...

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


Molly is different now than she used to be and the change happened sometime around the time I got divorced and moved into my own place with her. She used to be the hyper one, not especially affectionate, and always wanted her own way. She still wanting her own way, but the move changed her. At first, it was for the worse. The separation anxiety she experienced was bad enough that she almost hurt/killed herself trying to go through a window when she was home alone, I was renting at the time and my landlords were not appreciate of her const…

Divorcing Sjögren's

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


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


It can also be tough heading into uncharted territory in regards to…

Loving Someone With A Chronic Illness

This post is being prompted by an incident that occurred last night. One that unfortunately, happens more often than I would like. And much more often than my husband would like. As I have talked about previously on this blog and on its Facebook page, I have been struggling with some issues regarding my feet. The issues started last July and after seeing a doctor, I was diagnosed with plantar fasciitis and tarsal tunnel syndrome in both feet.


The short version of the story is that I have been through months of physical therapy, countless doctor's appointments, night splints, trigger point therapy, orthotics in my shoes, the list goes on and on. It is likely that Sjögren's is a contributing factor and possibly the cause of this. Starting in December, I decided, after much consideration, to consent to cortisone injections in both feet. I had one in each foot with some relief, but the relief was only temporary. I then had a second injection in my right foot two weeks ago today a…