For Everything There is a Season

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

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Accepting Sjögren’s

December 1, 2014 / / 15 Comments

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 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…

Low Dose Naltrexone Update

November 26, 2014 / / 4 Comments

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!

Loving Molly

November 11, 2014 / / 1 Comment

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 of a full recovery for Molly.

I was thinking this morning about that difficult time I went through with Molly and realized that I understood why, despite the fact that I talk about her all the time with my family and friends, I never write about her…

Because I don’t need to.

Because a lot of the time, writing is therapeutic for me and my connection to this dog is so pure, and so untouched by the unsavory elements that normally affect personal relationships, that there is no need to process my feelings about her. There is no fighting, no misunderstandings, no hurt feelings, no family drama, no unfulfilled expectations.

Just love.

And a mean, pure love.

I never had children of my own. That’s a long story in itself for another day. I saw a posting recently on Facebook, not from anyone in my family, or close friend circle luckily, in which several comments were made in response to a woman (without any children) who said that her dogs are like her children. The responses went on and on about how a dog, or any pet, is nothing like having a child and that people need to stop comparing being a pet owner with being a parent. I have read stuff like this before in articles and such, but this particular thread really got to me.

To begin with, Molly is like a child to me. Yes, I am completely sane and as a pediatric nurse, a stepmother to adult children, and a person who has a million friends with children, I do understand it is different. I understand that while my dog fulfills many of the same desires and needs that a child fulfills for a parent, it is not quite the same thing and having Molly as a pet, no matter how much I love and care for her, will never fulfill the loss I feel from not having a child.

I also understand that this dog and I have traveled through life together for ten years together and I would guess that most people in my life could never fully comprehend what we have been through together: losing half of our former family, our home, the nights we have spent alone together on the couch…

The time where I didn’t think I could care for her anymore and had the phone number in my hand for a basset hound rescue…

The Christmas Eve I stayed up all night with her when she was in agony…

The nights she stayed up with me when I was in agony…

The blizzard I drove two hours in to get her to an emergency room when she became paralyzed…

The night I stayed up trying to make a decision about whether she would be better off being put down or having a surgery that I could not afford…

The moment I saw her walk towards me several days after that surgery…

These are just a few examples of the journey we have been on in the past ten years. She has taught me the meaning of unconditional love. Isn’t unconditional love what being a parent is about? Some of the comments in response to that post I mentioned above stated that until you become a parent, you cannot know what that kind of love is like. I disagree. I think as a person who has never had a child of her own, yes, I do not know what it is like to raise a child. But that does not mean that I do not know how to love unconditionally and without reservation. It concerns me greatly that as a society, we judge each other on how we love. Or that we condemn each other on the love that we do have for all living creatures.

I rescued Molly from a shelter in 2004. She has been rescuing me ever since. At the age of 13, I know our time together is limited and will come to an end much sooner than I would like. She takes medication to manage her thyroid, her stomach, and the resulting arthritis pain from her 2010 surgery. She moves slower at times and is not the spry young thing she once was. However she still has a good quality of life and so we continue on. And the thought of her being gone forever scares me. But for now, I will love her. I will care for her. I will take advantage of every single day that we have left together. I will let her love me. And when the time comes, no matter how difficult it will be, I will be by her side when she is ushered to the other side.

Because that is love.

Revisiting Low-Dose Naltrexone (LDN)

November 7, 2014 / / 1 Comment

“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 down cell proliferation. For autoimmune diseases, this cell regulation results in the immune system being reset.

LDN, at doses of 1.5-4.5mg per day, works by blocking the opioid receptors in your body for approximately four hours. The body is tricked into thinking it is not producing endorphins, specifically those called Opioid Growth Factor (OGF). The body then compensates for this by increasing production of these opioids and their receptors, producing a rebound effect.

LDN was first introduced to me in early 2013 by my integrative medicine practitioner. It has successfully been used to treat Multiple Sclerosis and Crohn’s Disease in some individuals. My practitioner thought that it may be of use in Sjögren’s syndrome. The problem is not many people have heard of it and there haven’t been many studies done on its positive effects; although there were a few studies done with Multiple Sclerosis and Crohn’s patients which showed its benefits. LDN is a very inexpensive drug and is already available as a generic preparation, so of course research studies do not get big funding from the pharmaceutical companies and the drug remains underutilized. There are some grass roots groups that have been trying to get the word out there and that is the primary reason why I decided to do another blog entry about it.

So you are probably wondering why I am trying this medication for the third time. I have actually had some good success with it, however the side effect of insomnia has been enough of a problem that it has caused me to go off of it during one of the trials. Also, the last time I was on it, I was admitted into the hospital and put on narcotic pain medication for an issue that had nothing to do with the LDN. You CANNOT take LDN while you are taking narcotic pain medications. The only possible exception to this is Tramadol which I have been able to take, only on occasion, and I try to space it four hours apart from my LDN dose.

LDN is a compounded medication. I get mine compounded by Skip’s Pharmacy in Boca Raton, Florida and it is shipped to my house. They also do a vegetarian capsule which is dairy-free. The owner, Skip Lenz, is a pharmacist who is considered an expert on the use of LDN and he is a very valuable resource. This is not a medication that all pharmacies know how to prepare in terms of fillers, etc. so do your homework on this. And do NOT get it in a slow-release form. The total cost, with shipping, runs me somewhere between $22-$28/month. Insurance does not cover it, but that is cheaper than many of my insurance co-pays.

Ideally, you should work with your doctor in regards to using LDN. But, if you want to try LDN and cannot get a doctor to prescribe it for you, you may contact Crystal Nason by email at this address: LDNDrListRequest@aol.com. Put LDN Prescribing Doctor in the subject line and tell her where you live. She has an extensive list of doctors who prescribe LDN and I have heard she is an excellent resource for this.

I am seeing a different integrative medicine practitioner now and we talked about trying the LDN again, but this time, by starting at a much lower dose and slowly increasing it to see if I can tolerate it. The previous two times, I started at 3mg I believe. This time around, I am starting at 1 mg. I am probably going to stick with that dose for another month or so. It has affected my sleep some already, but not to the extent it did before. Oftentimes the insomnia improves over time. Typically, people say that LDN should be taking between 9pm-3am so that it works on the endorphin receptors during their peak time, which is between 2-4am. This is probably the most debated topic regarding LDN…when to take it. Other experts on the topic feel that because of the mechanism of how it works, you can take it at any time of day. Because I have already started with some insomnia (I fall asleep fine, but wake up around 1 am for a while and feel wired), I am trying it in the morning. It’s too soon to tell yet if that is helping my sleep as I have had some other issues affecting my sleep this week.

What I have noticed just from being on this small dose is that my typical low level anxiety that I get from time to time is gone and in general, I feel more on an even keel. My energy level has also improved a little during the day. In the past, when on higher doses, I have seen a dramatic improvement in my pain levels and energy. And that is exactly why I am working so hard to get LDN to work for me.

The thing about LDN is this: besides the insomnia and vivid dreams, there is minimal risk and side effects to taking it. OK, you have to deal with the narcotics issue but besides that, it is a relatively convenient medication to take. No life-altering side effects like all the immunosuppressants that get thrown at us; osteoporosis, diabetes, cataracts, cancer, the list goes on and on. If you are being treated for a thyroid disorder, you need to more closely monitor your thyroid levels because as LDN regulates your immune system, your TSH levels can fluctuate  and you may need a thyroid medication adjustment. And finally, as we know, not all medications work successfully for everybody.

Because the research is limited and its not well known as a treatment for autoimmune illness in traditional western medicine, there are a lot of unknowns about the medication at this low dose, the dose timing thing being a perfect example. So if you decide to try it, you are going to have to listen to your body, do your research, and find what dose and timing works best for your body and particular illness. Don’t give up on it. There are plenty of non-prescription sleep supplements to help with the insomnia if you should need it and I believe that LDN is well worth the effort. While I don’t think it is a miracle cure, I do think it can be an important component of the treatment plan.

Plaquenil and Retinal Toxicity

November 6, 2014 / / 2 Comments

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 Sjögren’s syndrome.

Despite the four hours of travel it would take me to get to Mass. Eye and Ear, I was more than OK with going for this consult. I felt like I didn’t have the best rapport with my current eye doctor and he was not offering me much in the way of effective treatments. I figured a new perspective would be good.

Again, another smart move. To start with, I immediately felt comfortable talking to him. However I found out some information about my eye condition that despite seeing two different eye doctors over the past six years, I was unaware of.

I have been taking the medication, Plaquenil, since early 2008 for Sjögren’s syndrome. It is a medication commonly used by doctors to help treat a variety of autoimmune illnesses, despite the fact it was originally marketed as an antimalarial drug. It modulates the immune system, without all the harmful side effects that can result from immunosuppressants. The one catch is that it can cause something called retinal toxicity, which is a condition which leads to vision loss and can result in blindness.

When I started Plaquenil all those years ago, I was told about the possibility of the retinal toxicity. I was also told that it almost never happens and the risk is somewhere around less than 1%. It seemed to me that the possible benefits far outweighed that tiny risk. However through the years, it didn’t seem to me that Plaquenil did a lot for me in regards to my Sjögren’s symptoms. It’s hard to know though since I have almost always been on it.

So when I saw this new eye doctor, he asked me several questions about my dose, how long I have been on it, etc. Then he told me that once you are on Plaquenil for greater than five years, your risk for retinal toxicity greatly increases, to about 10%.

10% ?!?

Now, that may not seem like a big number to you, but if someone told you you have a 1 in 10 chance of developing a condition that would affect your sight, especially with a medication that you are not sure makes all that much of a difference, trust me, you would look at things differently.

I will be honest, I was really ticked off…not at him. But for never being told about this. I have been making medication decisions without all the facts and therefore, making an uninformed decision. One that could have significant consequences.

He also went on to explain that the risk of retinal toxicity is affected not only by the amount of years on the drug, but by the dose, your weight, and your height. Toxicity is impacted by the cumulative dose of Plaquenil that you have taken in your lifetime. He also went on to explain that the every six month vision field tests I have been undergoing by my previous doctor are not the sole current recommendation for retinal toxicity screening.

What?!?

While the vision field tests can be helpful and used to be the gold standard of screening for toxicity, it was found that by the time something abnormal showed up on the vision field test, the damage has already been done. And even if you stop taking the Plaquenil that day, the damage can continue to occur even while off the Plaquenil. Also, most patients don’t notice symptoms on their own in the early stages of toxicity, which contributes to the problem.

Rather, there is a test called a SD-OCT test. It stands for Spectral-Domain Optical Coherence Tomagraphy and according to my doctor, it is more reliable in detecting early changes in the retina. According to some of the research, the ideal screening is to do SD-OCT testing along with visual field testing. You can read more about the updates 2011 screening guidelines HERE.

My point in writing all this up is not to scare anyone about Plaquenil. I know a lot of people who take it and a lot of people who have had great success with it and never want to live without it because it has helped their symptoms that much. But rather, my point is to inform you so that you are not in the situation I was in of being uninformed and making medical decisions when you do not have all the facts. Read. Learn. And educate yourself!

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