Tuesday, January 20, 2015
I happened to notice that my posts on low dose naltrexone (LDN) get a ton of traffic, maybe even the most traffic out of any other topic. I am relatively certain that the reason for this is because more and more patients and medical providers are learning about all the potential benefits of this under recognized medication.
I have written about LDN a few times in the past and lately, I have also been getting some e-mails asking where I am at with it. So I figured an update, even a brief one, was in order.
I am currently taking 2 mg of LDN every morning. If you have followed by other LDN posts, you will know that this is my third and final attempt at making LDN work for me. I have definitely had benefits from it in the past, but the insomnia issue negated any positive effects I was getting from it in terms of fatigue and pain.
I got up to 2 mg over the past several months and I think that is a critical reason why I am doing so well with it this time around. I am taking it in the morning. There are so many different opinions amongst the "experts" as to whether morning dosing is therapeutic at all. And honestly, I don't feel the need to get into that debate. What I do know is that it has helped my pain and fatigue and that is good enough for me. If insomnia is a big issue for you with LDN, I encourage you to try morning dosing.
That being said, my goal is to try and switch it to evening dosing to see if it makes any difference in my symptoms. Since my sleep has been great lately, I will probably do that soon. I am also planning on increasing the dosage to 3 mg at some point. I am waiting on that because I want my body to take its time adjusting to the 2 mg and I want to try switching it to the evening. I also just got more thyroid better regulated and I know that a dose change will likely mess with that. Sometimes its good to just go with the flow.
I don't have ANY side effects at this point with this current dose. While it has improved some of my symptoms, I still have a long way to go and I will see what happens with the changes mentioned above.
If this is the first you are hearing of LDN, I encourage you to do some research and talk to your doctor. Most medical providers have not heard of it and they require some information. This medication has very low risk of side effects associated with it and I think it is worth your while to investigate it further as a possible treatment for yourself.
Monday, January 12, 2015
After careful consideration and a lot of research, I made a decision after the holidays to embark on a cleanse/detox. I will start by saying that I have never done anything like this before, mostly because I don't believe in fad diets, or any diet for that matter, and also because I'm not sure, with all my health issues, how good it would be for my body.
However, I had been having some new digestive issues and some of my other autoimmune symptoms were acting up sporadically here and there. I also really overdid it and made some consistently bad food choices over the holidays and I was trying to get my food cravings under control. The digestive issues were not anything severe that impaired my daily living, but I am slightly paranoid about my family history of ovarian cancer and I am at the age my mom was when she was diagnosed. The most overlooked and under recognized symptoms of ovarian cancer are the digestive issues I was having such as bloating, gas, and constipation. Since I have never had any issues with these symptoms before and was suspicious about my diet being the culprit, I figured I could eliminate the ovarian cancer concern, and therefore another doctor trip, if I tried something like a detox or cleanse.
I did a lot of online research and decided to do the 10 Day Green Smoothie Cleanse by J.J. Smith. I thought this plan would be best because Ms. Smith is a nutritionist and I already have a lot of green smoothie experience. I also felt that it was a safe approach because it incorporated all the essential nutrients and foods groups (vegetable, fruit, protein, and carbohydrates) that I thought were important. I also liked that the plan included healthy snacks in between the green smoothie meals. I bought the Kindle version, which got amazing reviews on Amazon, and you can find the book HERE. In my opinion, its worth every penny!
I started the 10 days on January 1st; not because it was a new year but because it would be easier to keep track of what day I was on when I was making the recipes. I also knew that in terms of my work and medical appointment schedules, my load was lighter for that period of time.
I am not going to go into every single detail of the plan because I feel that its not fair to the author to put all that information here and therefore risk affecting book sales. But the basic outline of the program is that for 10 days, you drink a green smoothie for breakfast, lunch, and dinner. Each day she gives you a different recipe and you can either make your whole batch for the day or divide it in two like I did. If you have a regular blender, you will need to divide it in two as it will not all fit. I was in the market for a new, really good blender anyways after seeing a nutritionist.I found a Blendtec on Amazon at a steep discount and it was also worth every single penny. This thing is amazing! Anyways, you DO NOT need a fancy blender for this plan or to make green smoothies at all.
Each recipe is specifically formulated to maximize results. This was designed as a weight loss program and even though that was not my primary objective, I was curious to see how the results would be. The book claims that if you adhere to the exact program, you will lose between 10-15 pounds.
In between your meals, you can have snacks and she actually encourages this in order to maximize your metabolism. The snacks are limited to hard boiled eggs (I don't do eggs at all!), small amounts of unsalted nuts and nut butters, apples, and raw vegetables. That's pretty much it. Only water to drink except for the recommended detox tea which you can find in any grocery store. There is an option to add a plant based protein powder which I did. I use Vega protein powder. The plan also encourages the use of a supplement to help you go to the bathroom if you are having trouble, but I never needed to use it.
Overall, I was compliant with the program. When I started with detox symptoms, I did add more protein powder than suggested and I was OK with that as I felt my body needed it. I also stopped the detox tea after the first few days as I realized it was causing a severe migraine, separate from the detox headaches I was getting. I felt that it really wasn't worth it. If I ever do the program again, I would search for a different detox tea. I also had a few extra bananas during the 10 days as there were a few times my blood sugar dropped more than I was comfortable with and I felt like I was already getting enough apples in my diet at that point.
So for me, it was a good program. It was also incredibly difficult, especially days 2-6. I had joined the Facebook page with the same title for some support and I saw that detox issues were not unusual. I had a mild-moderate headache days 2-5, stomach pains days 2-6 (to the point where I took Prilosec every day, which helped), and severe muscle pains around days 3-4. I would read on Facebook that by day 6, everyone would start feeling fantastic but for me, that really didn't come until day 9, although days 7 and 8 were much better and day 10 was the best day for me. You're probably wondering why I even stuck with it when I was having all these issues. Well since I had been consuming so much junk, especially dairy, gluten, sugar, etc., I knew that this was part of the process. Also even though I initially felt lousy, I saw those original digestive issues begin to ease up and that motivated me to keep going.
During the 10 days, I also knew that I didn't have a lot of social obligations and that made it easier to resist temptations. My husband was incredibly supportive of the plan. I told him I wasn't cooking for the 10 days and he made a huge effort to not bring temptations around me. I did end up cooking on two nights for him because honestly, I missed doing that for him and I missed the aroma of food. Not too much aroma from frozen fruit and vegetables! I also backed off my exercise regime a little in order to give my body the rest that it needed during the process.
The only negatives that I could find with the program were that they added stevia to the recipes. Anyone who makes green smoothies knows that the fruit gives you the great taste and sweetness, and you don't need stevia. There was maybe one recipe that benefited from it as the fruit used was not as sweet. The stevia is optional so if you do follow this plan, check the taste of your smoothie before adding the stevia. Also, the amounts of fruit used was actually much more than I was used to. Although I read comments on Facebook from diabetics who seemed to do OK with it, I wondered for someone like me, who has PCOS, if that much fruit hinders the weight loss amount.
In the book, there is also a chapter about what to do after the 10 days is over. I am two days out now and gradually, I am reintroducing more foods back into my diet. This phase is very important to me because I want to try and identify which foods may be giving me issues. My plan is to still keep gluten, most dairy, soy, corn, GMO-laden foods, most processed foods, artificial sweeteners, alcohol and a few other things out of my diet for now. I am still having at least one green smoothie a day for a meal and will probably continue that indefinitely as it is such a great way to flood my body with nutrients.
So, here's the benefits that I got from doing this program for 10 days and then continuing a clean diet afterwards:
1. I am sleeping SO much better, its not even funny. Best sleep I have had without sleep medication/supplements in years.
2. Since day 10, my energy level has skyrocketed. Its almost scary for me because I am so not used to it. It has only been a few days so I don't know if it is a fluke or not, but time will tell.
3. I got sick out of the blue around day 8 with a cold, including a low grade fever, that has been going around. I stuck with the plan, even though I desperately wanted chicken soup, and less than 24 hours later, my symptoms were gone. It was freaky. I have never bounced back that fast, even pre-Sjögren's.
4. My sinus and allergy issues have improved some.
5. At this point all my digestive issues are almost completely gone.
6. Food cravings have diminished dramatically.
7. For a variety of reasons, I was having some anxiety issues and right now, the anxiety is significantly better. My mood also seems more even.
8. I have a little improvement in my joint pain. I cannot directly relate this to the cleanse at this time like I can with the other improvements, but its worth noting.
9. Candida issues have improved.
10. I lost 8 lbs. Many people on the Facebook page would be disappointed with that. For me, that is a very reasonable and safe weight loss amount for 10 days. It's a journey, not a race!
If you decide to try this cleanse, please feel free to contact me or ask any questions in the comment section below. And check with your doctor. I did not, but you know what they say: do as I say, not as I do!
Friday, January 9, 2015
In December , I was approached via e-mail by a woman, Kelly Morgan Dempewolf, PhD, with Sjögren's syndrome, who asked if she could send me a free copy of her book (that is my disclaimer by the way) As My Body Attacks Itself, in order for me to do a book review on this blog.
This self-published work, which is 192 pages, is a memoir describing her experience with Sjögren's syndrome. As a patient who published her own book on the illness, of course I was instantly intrigued as to what she had to say in this book. Here is the book description taken from the back cover of the paperback:
"50 million Americans suffer with an autoimmune disease and countless more deal with chronic pain, fatigue, and illness. These diseases are often invisible, yet they touch every part of a person's life and of the lives of the people they love.
This book is an honest, raw look at the thoughts, concerns, fears, and struggles as Kelly deals with Sjögren's syndrome (the second most common autoimmune disease). The story isn't just about Sjögren's, or even just autoimmune disease. It's for everyone impacted by chronic disease of any kind.
Kelly's hope is that patients will find solace and validation; friends and family will gain understanding and the abilities to empathize, communicate and support loved ones; and medical professionals will gain understanding and ability."
The book is divided into 41 plus chapters and reads similar to a person's journal or even an online blog. Each chapter is divided into different topics and these range from topics like disease envy and pain medication to others like brain fog and parenting. Each chapter is written from her perspective and details, quite elaborately, her journey and experiences with each of these issues or events. If you are someone who has Sjögren's syndrome, I am certain that you will read parts of yourself, and your experiences, while traveling through this book.
Because this book is a story about a personal journey, I don't think it is possible to fairly review the book beyond that because in doing so, a reviewer would be judging another person's very real and very painful experience battling an often misunderstood and little-known illness. And I feel that nobody has the right to really do that.
Rather, I think it is important for you to read the book yourself and see what comfort you may be able to find in reading a story about a brave woman going through a struggle similar to the one you, or your loved one, may be going through right now. You can find Kelly's book on Amazon by clicking HERE.
Monday, December 15, 2014
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; we shall see!
Monday, December 1, 2014
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.
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 living well with chronic illness, no doubt about that. However, I now realize that in my efforts to keep myself from getting down and out, I have placed this unrealistic expectation on myself that I need to be upbeat and positive all the time when dealing with others, especially in my writing. I try very hard not to complain whether it is online on social media, or with my friends and family. And I think that is a disservice to us all.
The exceptions to this are my husband, my parents, and my brother. They get the real deal, 24/7. Why? Because they are "safe". I don't worry that they will judge me, end a friendship with me, or realize that being in a friendship/relationship with someone like me can be really hard at times. It is not for the weak or for those who cannot handle the unpredictability of what this illness brings. They see me at my worst and love me anyways.
But, living like that is exhausting.
And I cannot keep it up.
I am here to tell you that Sjögren's syndrome sucks. It is this pervasive and debilitating illness that NEVER gives you a day off. Every single morning I wake up knowing that at the age of 43, I am never going to have a day again where I am completely healthy. It will never go away. It will follow me every single moment of every single day until the day I die. And hopefully, that will be because of old age, and not because of Sjögren's complications.
That is not a negative attitude.
That is called acceptance.
Acceptance is what frees you. It is acknowledging the reality of the situation while at the same time, making a plan to live as wholly and completely as you can, despite it all. It is knowing that you can do anything you set your mind to while at the same time knowing that doing some things are not worth the price you will pay in the end.
Acceptance is being your genuine self. Not pretending to be fine when you are not. Knowing the value of letting people see how things really are. How exhausted you are or how much pain you are in. How discouraged you are when you spend half of your work week in doctor's appointments.
Acceptance is having and using the ability to say "no" to people and requests, especially the ones that come from people who don't try to understand, or maybe don't even care about, your limitations or restrictions. Maybe its saying no to a trip that you know will be difficult or a stressful situation that may exacerbate your symptoms.
So I am going to work on acceptance and I will forewarn you, it probably will not be pretty at times. It will involve being more honest and I'm sure, using more swear words because that is just what I do. I am aiming for progress, and not perfection. Maybe you can too...
Wednesday, November 26, 2014
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 the Plaquenil does nothing for me. I did find out that my TSH levels are the highest they have been in years, which probably also accounts for the overwhelming fatigue. I was also having more joint pain, plantar fasciitis pain, and muscle pain. However we cannot increase my thyroid medicine while I am titrating up on the LDN because as the LDN dose is increased, I will likely require less and less thyroid hormone. My endocrinologist does not want me to swing rapidly the other way.
I increased my LDN dosage about ten days ago to 2 mg and the past few days, I have felt much better. Except for the days I work at my school nurse job, I am getting through many of my days again without a nap or lying down and my energy is better. My joint, muscle, and plantar fasciitis pain has lessened and overall, I feel like I am one again headed in the right direction.
I am struggling some with my sleep, more so than on the 1mg. However it is not as severe as in the past. I wake up several times during the night, but then fall right back asleep. Overall, I feel rested. I am working on experimenting with different dosages of my sleep supplements and I am hoping to find the right combination so that I can continue to increase the LDN.
I will continue to post updates as things change. Wishing you all a most wonderful Thanksgiving!
Friday, November 14, 2014
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 morning while he was at work.
Damn him, stalking me!
Then I tell him that it was the first time I had complained all day and his response?
"I am probably the first person you have talked to all day."
He gives me no credit. So while it is true that I tend to spend most of my time alone the entire day during the week, I kindly informed him that not only had I gone to the bank and CVS, but yoga class as well. And since all the elderly people were once again complaining about the temperature at yoga and begging the instructor to crank up the heat to desert temperatures, I was quite proud of myself for having made it that far in the day without contributing to the world's negativity.
This is where I mention that my husband was really not nagging me and was just bantering with me...big reason why we get along so well!
Anyways, I really think I did OK the rest of the day after that. To be honest, I was alone again until about 5:30pm when I then went out with a friend to a gluten-free tasting at a local store. Her and I can literally talk for hours and hours straight so there was too much conversation for me to remember it all, but I don't recall any straight out complaining during our conversations.
I also tried to watch the internal dialogue I have all the time with myself when I am alone, to see how much I complain in my self-talk and that seemed to improve as well. I have to say, that was the most challenging aspect of the 24 hours...to catch my negative thoughts. I also did discover that there is a big difference between complaining and just talking through things. For example, we all have issues or scenarios that we need to work out for ourselves. Talking with a friend about how to handle a particular situation at work for example. I don't think of that as complaining, because it is a thought process in which a person is actively looking for a solution to a problem. To me, complaining is more about throwing negativity out into the world about things that we either have no control over or have no intention of proactively working on.
This has been a good little experiment and I am going to try and carry it into my day-to-day life from now on. I am striving for progress, and not for perfection. Which is a good thing because it is November 14th, my yard is full of leaves that still need to be cleaned up, and I see the first snowfall of the season coating the trees. I could go bonkers with that...