Monday, January 21, 2013

Mother By Chance...Mother Through Love

"Biology is the least of what makes someone a mother. " ~ Oprah Winfrey

Before I met my fiance, Chuck, I was married once before and engaged once before that. This gave me one past mother-in-law and one past mother-in-law to be. Neither of which I was close to. I got along fine with both of them, but the mother-in-law to be moved to Tennessee about a month after my ex-fiance and I started dating. I saw her maybe once during the entire course of our three year relationship. She and my ex-fiance were not particularly close so there was not a lot of effort on either side to visit.

My ex-mother-in-law (hopefully you are still following this) and I got to know each other a bit but then she went kind of crazy and just stopped talking to us right after our wedding. She wouldn't return phone calls, letters, nothing. At first I thought it was me, but after a confrontation with her where I showed up alone on her doorstep demanding some answers as to why she cut her son and I out of her life, I realized it had nothing to do with me. According to her, my ex-husband had secretly severed ties with her and was lying to me about it. It was him that was the issue. I did not believe her at the time and down the road I did found out that my ex-husband was a pathological liar so to this day, I don't know who was telling the truth; although I suspect that maybe she was all along. You can all see why that marriage ended.

Do you know that when you Google search quotes about mother-in-laws, there is not one positive quote to be found?

When I started dating Chuck, his mom, known to me as both "Nana J" and "Mom", was living with Chuck's brother, sister-in-law and their three boys in a town approximately two hours from where we live. I remember being nervous as hell the first time I met her and I remember exactly why: because she was so important to Chuck. But the first visit went well, as did every other visit after that.

We would go visit her every other month or so and typically there would be a house full of people during our visits and Mom didn't talk too much during these visits when everybody else was around. Rather, she would mostly sit and listen to everyone else conversing. Because of her physical limitations and her desire to stay put at home, she never wanted us to take her out anywhere so all of our visits would take place in the comfort of her home.

Things changed though one Saturday when Chuck and I went to visit. His brother and his family went away for the afternoon and it was just Chuck's mom and his sister-in-law's mother, Lu, at the house. Chuck's mom was not feeling well and resting in bed that day but one of us needed to keep an eye on Lu, who was in the living room. We took turns doing this so it gave me the opportunity to sit and chat for quite a while with Mom alone; without Chuck and without interruption. To me, this was definitely the turning point in our relationship.

What I realized during that visit was that I truly liked Chuck's mom. Not just because she was his mother, but because of the person she is. Of course I had always liked her but now I was getting to really know her. She is a straight shooter and you never have to guess what she is thinking. She has a heart of gold and a quick wit to match. At a time where I am still trying to find my way amongst Chuck's family, she takes a genuine interest in getting to know me as a person and not just as her son's fiancee. She makes me feel like I matter.

About two weeks after that visit, Mom was hospitalized, which was the first of several hospitalizations in the next few months. We started visiting her with increasing frequency and each of those visits brought Mom and I closer. I don't know if it was because it was usually just the three of us visiting together at the hospital or because of the circumstances with her being ill. Maybe both. But those visits became so precious to me. She would tell me story after story about Chuck and his siblings growing up. I learned more about his deceased father. We talked about a lot of different issues facing the world today. I had the opportunity to tell her bits and pieces about my own family and upbringing. We laughed like crazy. We established a bond. She was no longer Chuck's mom, but a part of my family as well.

On the long drive home from one of our visits with Mom at the hospital, I burst into tears. And I don't mean the gentle roll down your cheek kind of tears. These were the chest rising, sobbing kind. Because I knew. Even though a doctor had not said so yet at this point, I knew something was terribly wrong with Mom. The weight loss over the past year, the decline in her physical abilities, the bone pain, the mysterious things showing up on her lung CT scans, her history as a smoker, her lack of appetite, all of it.

We were just getting to the good, part her and I.
And now there was not going to be enough time.

We finally got the official news approximately two weeks before this past Christmas that Mom was terminal. A failing heart and a mass in her lungs She did not want to pursue any further testing or treatment and Chuck and I support her in that decision. Chuck was devastated by the news and my first priority was, and will continue to be, to support him through this process. This is after all, his mother. The one that gave him life and raised him to be the incredible man that he is today. They have had fifty-five years together. I am so grateful to her for making sure that someone like him exists in this world.

I was struck hard by the news of her limited time left with us. Not to say that I was surprised by the news, but I began to feel an enormous sense of loss. At first, I felt like I didn't have a right to feel like that. This was not about me after all. This was Chuck's mother who was dying. At least that is what I told myself. But what I began to realize was that yes, I was very sad for Chuck and his loss but because of the time in which we have been able to connect and bond so much, I realized something more.

I love her.
It was going to be my loss as well.
Certainly not on the same level as Chuck's, but a great loss all the same.

Mom has since moved to a rehab facility and is waiting for nursing home placement. We continue our visits; oftentimes Chuck and I go together and sometimes I go alone. I treasure every single moment that I am in her presence and I don't take one minute of it for granted. We still continue to bond although because of her physical state, our visits are much shorter. My only regret, or rather wish, is that I had met Chuck sooner so that I would have had the blessing of spending the time with her that others in his family have had the privilege of having.

I will admit, it is difficult to watch someone you love deteriorate from week to week. It is even harder to watch your partner slowly lose his mother. My marriage to Chuck may still be four months away but I do not have the luxury of time. It is not on my side. I do not have the piece of paper that signifies that I am officially her daughter-in-law. But she will now and forever be to me, my second mother. The one given to me by chance and through love.

Sunday, January 13, 2013

Road To Marriage

"Become the kind of person the kind of person you would like to marry would like to marry." ~ Douglas Wilson

Four months from this Friday I will be getting married.
A whole wedding and everything.

This is a big deal.

I know marriage should be a big deal in general, but let's be honest. In our society today, people get married and divorced more often than many people change jobs. My fiance and I have both been married before so now we are going to be included in the second marriage statistic. You know, the one that says half of all second marriages will end in divorce.

We will not be on the wrong side of those statistics. I'm sure everyone in love says that right before they get married again. Truth be told, I was fine with never getting married again. That was before I met a partner who made me experience real love for the first time.

That is a strange thing to say considering I was married once before and engaged to someone else even before that. My first fiance was this great guy I met at work when I was about twenty-three years old. We started out as co-workers and then became friends. We dated for a while, I moved into his house, we talked about marriage, I got cancer, he proposed, and then four months before the wedding, the bomb dropped.

He told me that he had come to realize that he never truly loved me and had only proposed because I had just finished my cancer treatments and he felt like he was obligated to propose. That is was what he was "supposed" to do. He should have said something sooner he told me.

Problem was, I still loved him.

So I moved out of the house, sought refuge at my parent's home because I was such an emotional wreck and spent the following weeks cancelling all the wedding plans that were already in place. To this day, I do not think he was a bad person. Confused and gutless yes. But not bad. After a while, I decided I was too young to pine away for a man who would never love me. I found my own apartment and continued to throw myself into my career, my family, and my friends.

Enter the next love. My ex-husband. I met my ex-husband approximately eight months after the break up with the ex-fiance and I did not date anybody in between. I am here to tell you that is a big mistake. I would have sworn to you up and down that I was not on the rebound and maybe I wasn't. I was twenty-eight years old and all of my friends were getting married and having babies. Now I absolutely thought that I loved him and that he loved me but now looking back, I wonder if subconsciously, I was more in love with him or the idea of being in love with him and having the life society tells us we are supposed to have. You know, the one with 2.2 kids and a white picket fence. Because there were signs there that maybe he was not the right person for me but I did not pay attention to those red flags. I wanted to spend my life with someone and raise a family. I thought this was the way to be happy. Tough thing to admit.

Approximately a year after we got married (we had dated for two years prior to getting married), my ex-husband changed in a way that resembled Jekyll and Hyde. He decided that he did not want children after all. His mood started to change dramatically at times, he developed flashbacks, and he was subsequently diagnosed with post traumatic stress disorder (PTSD) which was a result of severe childhood abuse. Then the heavy drinking started and the only thing more difficult than living with an alcoholic, is living with one that has PTSD.

I tried and I tried as hard as I could to keep my marriage together. Eight long years of trying. I certainly made my share of mistakes during my marriage but none that warranted the way I was treated. I thought that if I loved him enough, he would be able to work through his issues, we would have a family and be happy. Instead, I became an emotionally abused wife. The day that he became violent and I thought he would hit me, I began the journey to becoming his ex-wife.

It was not easy, but I have never looked back.
I was finally free.

Despite the fact that the year prior to separating with my ex-husband I began to get very sick from autoimmune related issues, my life really started to evolve. I took control of my life. After we sold our house, I took one of our dogs, moved into my own apartment and discovered I truly enjoyed living by myself again. No chaos. I spent the following two years figuring out who I was as a person and reshaping my definition of what it meant to be happy and that it did not have to include being married, or even having a partner for that matter. Being happy did not depend on whether I was a mother or not. In that quest to find myself, I truly became happy.

I reconnected with my old friends and I made new ones. I began to write and pursue other interests when I wasn't dealing with my significant medical issues.. I became involved with my church. I dated quite a bit. I even fell for a guy or two. However after a while, I found dating to be exhausting. As a thirty-nine year old with a severe chronic illness, dealing with the drama associated with dating just became too much. Too many liars, cheaters, and men with severe issues. It wasn't worth my precious energy. I decided that I was going to be content with living on my own, in a great apartment, with my very cool dog and my wonderful family, friends, and church community surrounding me. I had my head on straight now and I was not going to compromise my happiness, health, or peace of mind for anyone else.

Best laid plans, right?

Then enter Chuck. What is it that they say? That love often happens when you are least expecting or looking for it? If you are interested, you can read our story here: Summer of Friendship...Summer of Love.

I knew within weeks of dating Chuck, that I would spend the rest of my life with him. I didn't care if that involved marriage. I just wanted to be with him. He had become my best friend and it quickly became apparent to me that I could not imagine spending one day without him in my life. It was a big risk for me and maybe he would say the same thing for himself. The risk of loving again after you have been hurt so deeply in the past is probably one of the biggest acts of courage a person can perform. The difference for me this time though was that I knew I was with the right person. I knew what true love felt like.

The type of true love that makes you want to be an even better person than you already are. The type that supports you and encourages your dreams. The type that makes you want to work through all the very difficult questions and differences between you.The type of love that is ultimately unconditional.

I think I just wrote part of my wedding vows.

I am the woman who said she would never get married again but yet, here I am. Older, wiser, and with eyes wide open. I am the woman who is very glad to be a stronger, confident, and more self aware version of her younger self. One who, when she stands in front of her family and friends committing her life to another on May 18th, will know, with all certainty, that it is possible for marriage to last forever.

Wednesday, January 9, 2013

Low Dose Naltrexone

In my last blog entry I discussed my current experiences with an integrative medicine doctor. (Going Down the Road of Integrative Medicine). In that entry, I mentioned a new medication I was prescribed by this doctor called low dose naltrexone (LDN) and I think that it is worthy of its very own blog entry so here we go. Be forewarned, it's a bit complicated...

Since we have the modern day miracle of Google, I am not going to spend a lot of time describing LDN and exactly how it works, but I think there are some basics that are important. Naltrexone is a medication that was created in the late 1970's as a treatment for heroin overdose and subsequently used in larger doses (50-300 mg) to treat heroin addicts. It blocks the opiate receptors in our body, which are also found on immune system cells. The next discovery, in the 1980's, was that naltrexone at lower doses (hence why it is called low dose naltrexone), blocks these opioid receptors and increases the endorphin levels in the body, which were noted to be low in people with autoimmune disorders as well as in many other illnesses, such as cancer and AIDS. At lower doses, such as 3-4.5 mg, the LDN blocks the opioid receptors for a short time, a few hours. Once this blockade wears off, the body responds by increasing its production of endorphins and this results in cellular changes that inhibit cell growth, inflammation reduction, and healing. It is not an immune booster or suppressor, but rather an immune regulator.

OK, whew. That hurt my head. I have found two books to be extremely helpful in understanding LDN. The  first is: The Promise of Low Dose Naltrexone Therapy by Elaine A. Moore and Samantha Wilkinson and also Up the Creek with a Paddle by Mary Boyle Bradley.

Now, when my integrative medicine doctor told me that he wanted me to try this medication, he did not make any promises or unrealistic claims about its effectiveness. He did refer me to the website: for more information. However after scouring this website, I became skeptical about the medication. I had a hard time believing that one medication, as seemingly harmless as this one, could effectively treat all the diseases that it claimed it could: autoimmune disorders, many types of cancer, and AIDS. Because if it was that effective, why were so many people still sick? Why didn't more doctors and patients know about it?

After about a month of online research and reading the above two books, I had to admit that I was very intrigued by the positive effects LDN was having on some people with autoimmune illnesses, specifically multiple sclerosis (MS). Sjogren's syndrome and MS can share an uncanny amount of similarities in terms of symptoms and many people with Sjogren's are originally misdiagnosed as having MS. I also read many anecdotes about the success of LDN on other autoimmune illnesses such as Crohn's disease and rheumatoid arthritis.

So WHY don't more people know about this? Many proponents of LDN therapy claim that it is seen as an alternative therapy and that its use is not widely recognized because there is not enough clinical research done on the positive effects of the medication. There have been some small clinical trials done at a few very noteworthy medical institutions, but it has not been studied on a large scale. Why not? Well, pharmaceutical companies fund these trials and naltrexone is a generic, very inexpensive medication to produce. According to LDN proponents, there is no financial incentive. Despite the fact that this may sound like a conspiracy theory type of thing to a lot of people, with my less than favorable experiences in regards to the pharmaceutical industry, it all makes sense to me.

As I see it, there are two issues with LDN. The first is that the one major side effect it has is insomnia. This is something I have been struggling with significantly since last Spring, possibly due to another medication called Topamax. The second issue is that because it blocks opioid receptors, you CANNOT take any narcotic pain medications while taking LDN. If you do, you have to stop the LDN. Luckily, my rheumatologist is not a big fan of using narcotics to treat Sjogren's related pain issues and I have adverse reactions to many narcotics anyways. Because of this, I have worked hard at learning and utilizing other pain management techniques. When things are really bad, I do resort to a pain medication called Tramadol. Because of its mechanism of action, Tramadol is a centrally acting analgesic, rather than a true narcotic. However I was instructed that if I do take Tramadol, to space it four hours apart from my nightly LDN dose.

LDN is routinely taken between 9pm-2am although some people say that it can be taken in the morning. However since endorphin production is highest around 2-4am, it is thought that this is the best timing for the highest effectiveness. LDN also needs to be specially compounded by a pharmacist and not every pharmacy does this. I get mine from Skip's Pharmacy in Boca Raton, Florida. One month supply, not covered by insurance, costs me about twenty-five dollars with shipping.

So five weeks ago, after much trepidation and research, I decided to just go for it and I took my first dose of LDN. To begin with, the only side effect I have noticed is the insomnia and I will admit, it is pretty rough and worse than before I started the LDN. I have since weaned myself off of the Topamax, which I take for severe autoimmune related migraines, in the hopes that will help alleviate the insomnia. I already have a lot of alternative methods I use to help sleep such as meditation, herbal tea, etc. but like clockwork, I wake up between 1-2am every single night after going to bed around 10pm. Sometimes I fall back asleep and sometimes I don't. However that all being said, I have been battling a bad viral infection this week and have been sleeping better. Not sure if that is because I am sick or not. Because sleep deprivation is a trigger for worsening of my Sjogren's symptoms, before this week, I had been taking a sleep medication two to three times a week to help me catch up on my sleep. I was told by Skip's that the insomnia should improve and possibly even go away within the next few weeks.

It is very hard to see a benefit from a medication like this when you have recently started other treatments as well. I started an autoimmune medication called Arava in October and an eye medication called Restasis in November. Except for a week exacerbation of joint pain on my third week of LDN, my joint pain has significantly improved and my eye doctor told me last week that my eye dryness has improved. LDN related? Possibly.

Since stopping my migraine medication, I initially had a week of migraines and they have since resolved. I am hoping it stays that way. If I continue to have a significant reduction in migraines or even complete resolution of them, I will absolutely attribute that to LDN because prior to LDN, I could not function without Topamax.

The improvement I have noticed, that I know cannot be attributed to other medication, is in my overall well being and my energy level. It is difficult to explain but does make sense considering LDN affects our endorphins. I feel more able to effectively cope with my physical symptoms when they do arise and my mood seems more stable. This is significant because I am still in the process of weaning off prednisone. There has also been a decrease in my anxiety level to the point that this week, I can say I have no anxiety at all. That is also significant as I am still waiting for some test results and this would naturally produce some anxiety for me.

At first, I did not see the improvement in my energy level. It was subtle. I also am not sure if it can be attributed to the Arava as well. Although I am still extremely fatigued by about 4-5pm each day, I have noticed that my days are becoming more productive. This is highly unusual, actually unheard of, when I am weaning off prednisone.

And that is where I am at five weeks into my LDN journey. In my head, the jury is still out as to how effective this treatment might be for me long term. I am hopeful.The signs so far are positive and I think time will tell; especially once I am completely off prednisone and hopefully the Arava as well. I also think that it is not a treatment that when used alone, will cure me. Rather, I think it is one more tool, along with exercise, supplements, diet, stress management, and multiple other modalities, that can be used in my long journey to improved health.

Sunday, January 6, 2013

Going DownThe Road of Integrative Medicine


"Progress always involves risks. You can't steal second base and keep your foot on first."~ Frederick B. Wilcox

I had been toying with the idea of seeing an integrative medicine doctor regarding my autoimmune issues for over a year. Integrative medicine takes into account the whole person and uses both conventional and alternative medicine as treatment. It focuses on body, mind, spirit, and community rather than just flesh, bones, and organs. It combines conventional medical treatment with complimentary and alternative treatments (CAM). Some of these CAM practices and treatments include dietary supplements, energy healing, clinical nutrition, and detoxification. Integrative medicine focuses on eliminating the cause of the disease rather than just managing the symptoms. Some people see integrative medicine doctors as quacks and some people view them as miracle workers. I know people who have seen them and the reviews have been mixed, although I would say I have heard more positive experiences than negative ones.

Despite the fact that the autoimmune illness I have, Sjogren's syndrome, had been unstable for years (except with higher doses of steroids which are a nightmare to deal with), I had put off the idea of seeing an integrative medicine doctor. It wasn't that I hadn't dabbled in what I guess would be called alternative medicine, such as acupuncture and massage, but the idea of anything other than standard Western medicine making me healthier seemed foreign to me. Maybe that was due to the fact that I am an RN. I have been trained in traditional medicine and it is all I've ever known. However it was becoming clearer to me that perhaps traditional medicine alone was not going to be the answer for me. Not that I was looking for a cure mind you. I had accepted the fact that I have a lifelong chronic illness. But rather, I needed more effective tools and treatment to improve my quality of life because as it was, that quality of life seemed to be going downhill year by year.

So this past November I went in to see a doctor at Northampton Wellness Associates here in Massachusetts. The practice is a group of integrative health care practitioners. I will admit, I was skeptical but my skepticism dwindled as I spoke with my new doctor. We discussed my history and a lot of the things he said made perfect sense. For a while now, I have often wondered if my autoimmune problems were triggered by the radiation therapy I had for lymphoma in 1996. I was never a particularly sick child or teen but from 1996 on, one health problem after another crept into my life. I did not share this theory of mine with my new doctor (Dr. L) but he said the same exact thing to me. He thinks that I am genetically predisposed to an autoimmune disorder (my sixty-five year old father was recently diagnosed with one) and that the months of radiation treatments brought out the autoimmune illness. He was quick to point out that this was unavoidable. I had to have the radiation in order to save my life, but now we must also figure out the best way to deal with the end result of that possible trigger.

He also went on to explain that most of the symptoms I experience are autoimmune in nature such as my asthma, migraines, joint pain, allergies, etc. Now I had always thought this and my rheumatologist had made some associations, but the further back we looked into my adult health history, the more I realized how connected all my ailments were. Dr. L also stressed that there may be several other contributing factors to my autoimmune issues such as allergens, environment, diet. etc.

We came up with a plan. I agreed to go for allergy testing which would initially be done by blood work. He did warn me that the blood testing for allergies is not always accurate but it is the least invasive preliminary step in the allergy testing process. I ended up testing positive for two different mold allergies that are often found on certain foods and so I am now beginning to attempt to eliminate these foods. Luckily, many of them are gluten or dairy based foods, which I already have eliminated from my diet.

However my blood allergy testing also did NOT reveal a cat or dog allergy; both of which I know for a fact I have due to traditional scratch test allergy testing I had done years ago. I spoke with the allergy department at the Center and decided to continue on to the next step of intradermal allergy skin testing which I will begin next week. The intradermal skin testing is significantly more reliable.  I thought it was important because if there is any chance that allergens (especially to my dog) were contributing to my autoimmune issues, I may want to pursue non-medication treatment for it; specifically allergy injections.

Luckily, at this point, my health insurance covers a majority of the costs for Dr. L. My health insurance changed January 1st but at my November visit, I had my regular copays for the doctor visit and the blood work. I have checked with the Center regarding my new insurance which will have the same coverage as my old one, including for allergy shots if I do definitely go that route. However I am aware that there will probably be other suggested treatments that may not be covered by my insurance but my philosophy is to take that as it comes. I am also trying to look at it from the perspective that further treatment may help me eliminate some of my current prescription medication and overall health care costs (think hospitalizations and ER visits) and allow me to cut the cost of these, all of which have skyrocketed.

I made it very clear to Dr. L that I did not want to abandon my traditional treatment for the Sjogren's at this time but yet, my goal was to eventually get off as many of my prescription medications as possible as I was on at least thirteen different prescriptions. That is a ridiculous amount of medication and I felt that I was probably having medication interactions. He was very receptive to this and said we would take it one step at a time. We would start with allergy testing, I would continue to wean off my steroids (which was my plan with my rheumatologist anyways), and he wanted me to start a new medication.

The idea of another medication surprised me coming from this type of doctor. It is called low dose naltrexone (LDN) and honestly, it is worthy of a blog entry all by itself. I had never heard of it before and it required a lot of research on my part. It is an "alternative" medication that he routinely prescribes for all of his autoimmune patients as it has been shown to have the capability to regulate the immune system and has had some good outcomes with certain autoimmune disorders. However I have only been on it for a month and am waiting a little longer to see how it continues to work out before I write that blog. The LDN can take a while to see a full effect so we agreed that we would meet again in February and see where things are at.

I liked the fact that Dr. L was treating this as a process and not overwhelming me with a million treatment options all at once because to be honest, I have seven or eight other specialists who are doing a great job at overwhelming me, no matter how unintentional it may be. I will admit, the process is very intimidating for me. I know about all things in traditional Western medicine. I know when to trust what a doctor tells me and I know when a doctor doesn't know what he or she is talking about. As a nurse, I know about prescription medications (well except for LDN!) but not so much about supplements and herbs. It is certainly a learning process and one that I hope will prove to be beneficial.

Am I still a little skeptical? Sure. But I am also skeptical about putting toxic, possibly cancer causing drugs into my body as I have been doing. I am skeptical about dangerous side effects I may have, and have already started to have, from being on steroids the rest of my life. I am skeptical about the quality of life facing me until the day I die. So really, what do I have to lose?