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Showing posts from 2014

Christmas Break

Every once in a while I give myself a self-imposed blog break, and that time has come around once again. I love writing and I love this blog, but it is like a job sometimes and it does require effort (especially editing), thought, and energy. The holidays are almost here, my husband and I are going away this weekend, and I have some issues I am trying to deal with which make it necessary to slow down and not put so much pressure on myself.


Granted, my writing frequency is not every day, but when things get hectic like this, it is one more thing on my plate. I also will have a break from my school nurse job for almost two weeks, with minimal medical appointments, and I am going to use that time to get some things in order in my life and just spend some time taking care of myself and enjoying friends and family.


So, I wish you all a wonderful holiday season. I hope that this season brings you some joy, love, and laughter. I may be back after Christmas, or maybe even after New Year's…

Accepting Sjögren's

I wasn't planning on doing any writing today but to be honest, I need to write. Actually, there are many times that I need to write. I cannot even tell you how many times I come to this blog to write about how I am feeling regarding living with this illness and instead of blogging, I close down my computer and walk away.


Why?

Because I feel like I don't have anything positive to say.


And it has come to my attention lately that this is probably not the healthiest way to deal with the psychological impact of having a chronic illness. Of course, I already knew that fact, but I never seemed to think that it applied to me. I thought that the best way for me to get through day after day with this heavy burden that is called Sjögren's syndrome, was to stay upbeat and positive.


Put on a smile.
Be grateful for what you have.
Make the best out of a lousy situation.
Hell, write a book about it even!


And you know what? I DO believe that keeping a positive attitude is a key element to…

Low Dose Naltrexone Update

I wish I had time today to do a much longer post on this, but it is the day before Thanksgiving and this is the year I permanently take over the Thanksgiving dinner from my mother. So, my husband and I are hosting tomorrow and it will be our first holiday celebration with some members from both sides of our family here for dinner. Lots of work to do. I am fortunate that my husband is a great cook so he does the turkey, peels the potatoes, and I do the other sides...


I noticed though that my low dose naltrexone (LDN) blog entries are getting a LOT of traffic over the past month or so and it appears that people are looking for information on it, especially in regards to Sjögren's syndrome, so here is my update:


I was on 1mg of LDN for a month. I will be honest, I have been feeling like crap...no better word to describe it. I don't think it was related to the LDN, but related to the fact that I am no longer on prednisone or any other autoimmune meds except Plaquenil. I feel that…

24 Hour Challenge Update

I wrote a post yesterday morning about how I was going to try and go 24 hours without complaining. You know, jack up that whole self-awareness thing and all because I honestly think that its all those little negative things that add up throughout the day that eat away at our outlook on life and on ourselves. You can read it HERE.


So how did I do? Well, I think overall, I did OK. Not perfect, but OK. I was sailing along just nicely until my husband called after lunch. He asked how I was doing and then I complained about how I dropped a ton of rice on the living room rug at lunch and the dog was too much of a snob to go eat it up from the rug. Of course, if it was hamburger, she would have eaten it before it even hit the floor! Anyways, this meant I had to lug out the vacuum, which was going to be quite a task since I had done yoga that morning for the first time in months.


Then it happened.


My husband called me out on my complaining! He had actually read my blog post from yesterday mo…

24 Hour Challenge

This is going to be short and sweet.


Starting from when I woke up this morning, I am challenging myself to go 24 hours without complaining about anything, and I mean ANYTHING! I am not typically a negative person, but I often find myself just pissing and moaning about the most ridiculous things. Granted, I have had a lot of good reasons to piss and moan this week, but that makes it the perfect time to take this challenge.


I will let you know how it goes...


By the way, what do you think of the updated blog design?

Loving Molly

I was at a dinner party with a group of friends last evening and one particular couple and I were discussing the topic of our dogs. After years and years of love and devotion, they recently had to put down their fourteen year old beloved pet this past year and in exchanging stories about pets, I found myself sharing my story about Molly. They had read anecdotes and seen pictures of her on Facebook, but didn't know some of the details of my trials and tribulations with Molly, my thirteen year old basset hound and black lab mix.


I was scrolling through my blog today and I realized that I don't write about Molly much here. I did write about her back in 2010 when we went through a horrible medical experience together. One which resulted in me having to make a decision about whether to put her down, or spend $5,000 on a surgery that looked promising in some aspects, but held no promises for either of us in terms of her quality of life. A story I am happy to say, had a happy ending…

Revisiting Low-Dose Naltrexone (LDN)

"LDN may well be the most therapeutic breakthrough in over 50 years. It provides a new method of medical treatment by mobilizing the natural defenses of one's own immune system." ~ David Gluck




I have previously posted at least twice about my trials with a little-known medication called low-dose naltrexone, LDN for short. You can read those previous entries HERE and HERE.


However I have decided that it is worthy of another post, because I am about three weeks into my third trial with it and I have recently learned more about the medication.


Naltrexone is a prescription medication that has historically been used in larger doses to treat alcohol dependence and opioid addictions. Since the 1980's, some doctors have discovered that it can be used in smaller doses, hence the name LOW-dose naltrexone, to successfully treat some chronic illnesses, specifically autoimmune diseases, cancer, HIV, fibromyalgia, etc. It accomplishes this by regulating cell growth and slowing dow…

Plaquenil and Retinal Toxicity

I will be honest; I consider myself a very well-informed and educated person in regards to my illness. I have often joked that I know more about Sjögren's syndrome than most primary care doctors, and possibly more than most non-rheumatologists. My very rocky road with this illness, coupled with an innate desire for knowledge, learning and empowerment, is the foundation for being an expert patient.


However this pretty much all went to hell during my last opthalmology appointment. For a variety of reasons, I made the very scary and drastic move of leaving my rheumatologist in CT and started seeing one at Massachusetts General Hospital in Boston. It ended up being a smart move. This new rheumatologist then referred me for for two consults, one of which being to Massachusetts Eye and Ear Infirmary in Boston to see an opthalmologist who specializes in ocular immunology and ocular inflammatory disorders. Basically a fancy way of saying that he deals all the time with people who have Sj…

Hearing God

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


During this time, out of the blue, I received an e-mail from the pastor of St. Paul's Episcopal Church in Suffolk, Virginia, Rev. Keith Emerson. He had been do…

Type 1 Diabetes and Walk To Cure Diabetes

Type 1 diabetes, also known as insulin-dependent diabetes or juvenile diabetes, affects as many as three million Americans every year. Approximately 85% of those affected are adults and 15% are children. For those of you not familiar with diabetes (also called diabetes mellitus), it is a chronic illness in which the body has difficulty regulating blood glucose levels in the body. There are two types: Type 1 diabetes, which is a disorder of the body's autoimmune system. There is a lack of insulin due to the breakdown of islet cells in the pancreas. In contrast, Type 2 diabetes, also known as non-insulin dependent diabetes, is a metabolic disorder in which there is insulin resistance.


In Type 1 diabetes, the affected individual must take insulin to stay alive. This means that they frequently monitor their blood sugars throughout the day and give themselves regular doses of insulin, either via an injection with a syringe or via an insulin pump. They must carefully balance their food…

Boston Sip For Sjögren's

On November 16, 2014, the Sjögren's Syndrome Foundation (SSF) will be holding their first Boston Sip for Sjögren's event in Cambridge, Massachusetts. Sip for Sjögren's is a fine water tasting event which includes a reception and silent auction. Guests will have the opportunity to sample some of the finest bottled waters from around the world. Those waters fall into five different carbonation levels which include still, effervescent, light, classic, and bold. Two bottles from each level are provided on round tables throughout the room. Each water has a tasting card that provides various details about the type of water and background on its origin, etc. A short program will accompany the event. All proceeds will benefit the SSF, the only national non-profit dedicated to increasing research, awareness, and education for Sjögren's.

This is very exciting news as this is the first time that a Sip for Sjögren's event will be held in Massachusetts. I think it may even be …

Being Visible With An Invisible Illness

This week is National Invisible Awareness Week and I figure it is as good a time as any to get back to writing since apparently, my last post was a month ago. I have no good excuses. Life has been busy, and I have been enjoying living it.


I won't get into all the details about why I have been busy; some of it has been simply having fun and some of it has been being there for other people or personal obligations. Whatever the reason, the past week or two has been more of a struggle physically than I am comfortable with. That's the thing about an invisible awareness: I struggle every single day, almost no exceptions. I have done a pretty good job at working those struggles into my life and accepting them, but the problem with that is, I appear completely fine most of the time on the outside. When in actuality, my body is falling apart bit by bit on the inside.


It's a double-edged sword for most of living with an invisible illness. For example, I do not want to be known as o…

Giving From the Heart

This may be a surprise to some, and not a surprise to others.

I never wanted a second wedding.

See, I never planned on marrying again, having been too tainted by nine long years in my first marriage. But you know what they say about best laid plans and all.


I met my current husband early in 2010, became friends with him during that summer, had my first date with him Labor Day weekend 2010, and then we became almost inseparable. And life as I new it changed forever.


When he proposed Christmas Eve 2011, I knew I was going to spend the rest of my life with him and I wanted to be husband and wife. I was, however, not thrilled about the prospect of planning a wedding. I was fine with scheduling a date with our minister, his wife, my stepchildren, my parents, and my brother.


Simple.
Easy.
Stress-free.


I wasn't opposed to the idea of celebrating with our friends and family, but I was spending a lot of time, and I mean A LOT, dealing with various health complications from Sjögren's s…

Tarsal Tunnel and Plantar Fasciitis

I have to say, I REALLY wish I wasn't writing this post right now. But, I am, so I am going to suck it up and share my experience with you in the hope that maybe someone can benefit from it, or that you can provide information in the comments section that may be beneficial to myself or another reader.


As I have posted previously, I began running last October. Since then, running, training for races, and improving my physical strength has become a godsend to me in terms of managing stress and in actually improving my Sjögren's symptoms. Yes, you read that right: running has improved my Sjögren's symptoms. From some of the research I have read regarding increasing endorphin levels (think low-dose naltrexone), I believe it is the endorphins and other feel good hormones that I get from running which has accomplished this. My chronically arthritic knees have IMPROVED and I no longer experience inflammatory joint pain in my knees, ever. Not even when other joints flare up. I do…

Community Supported Agriculture

Today is Wednesday, my favorite weekday during the summer now. Why, you ask? Because it's the day I go to a local farm and pick up my crop share from a local Community Supported Agriculture (CSA). I had toyed around with the idea last year of getting involved with a CSA, but was a bit uncertain about the whole thing. Then this past winter, a friend of mine asked if my husband and I would like to split a share as a whole share was too much food for her two-person family. With it just being my husband and I at home, I figured it would be a good way to try it out.



There are different options for how you want to pay and you can either pay the whole amount up front or pay in installments. The total price of our share, for the two of us, was $795. This included an additional fruit share which cost us over $100 for the season. This seems like a lot of money, but for two households, for twenty-four weeks, it is not. The breakdown for each of us is $16 per week. I will tell you right now …

BRCA Results

It has taken me longer to write and post this blog entry than I anticipated. I have been having a lot of trouble the past few weeks with joint pain, mostly in my hands and feet, and it has made time on the keyboard more difficult than I would like. My rheumatologist wants me back on prednisone. I think it is the result of an unusual amount of stress, coupled with my diet being less than stellar (I tend to be a terrible eater when I am upset/stressed, depending on the severity of the situation), and the hormone changes from having my Mirena removed less than two weeks ago. I am giving myself a few days to try and get myself straightened out before jumping on the prednisone bandwagon.


Anyways, I got a call this week from my genetic counselor with my BRCA test results and they were negative! Waiting for the results for almost three weeks was even more difficult than I had imagined. Someone asked me this week why I thought that this particular medical issue was more difficult than so man…

Birth Control, Mirena, and Me

Sometimes a topic comes up that I am somewhat uncomfortable throwing out into the world wide web community, and this is one of them. However, I had to go in for a minor office procedure two days ago and I was extremely nervous about what to expect. A Google search of some other blogs gave me information that helped me quite a bit, and reminded me of the importance of blogging and why I write what I write.


On Monday, the very same day that the Supreme Court of the United States of America granted a for-profit company permission to withhold financial coverage for certain types of birth control from its female employees (including IUDs), I had my IUD removed.


That was a total coincidence.


Here's the thing though. This blog is not about that decision because honestly, I want this blog entry to be more helpful than that. We all have our opinions about the case and trust me, mine is strong. But this blog is about women and the choices they make. The choices that impact their lives, the…