For Everything There is a Season

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

Page 23 of 44

City Of Courage

April 28, 2013 / / 2 Comments
“A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. ” ~ Christopher Reeve
 

On April 15, 2013, a terrorist act was committed on the people of Boston, Massachusetts as well as on the United States of America. Two young men, ages nineteen and twenty-six, decided for whatever reason, to bomb the finish line of the Boston Marathon. Three people were killed at the finish line and another person was killed by the suspects several days later. Two hundred and sixty-four people were injured. Lives were lost. Limbs were lost. Families were torn apart.

The day of the bombing, I had just shut off the television to go and do some housework. My fiancé called from work to tell me the news. He told me to turn on the television. I was in the middle of something at the time and was distracted. I thought he didn’t know what he was talking about. How could there be a bomb at the Boston Marathon? Not my Boston. Not our Boston.

Five minutes later I realized that my fiancé knew exactly what he was talking about. The horror was all over the news. Pools of blood on the ground and people running in terror. Fear gripped me as I tried to recall in my mind if any of the runners we knew were running that day. The fear continued as I ran through a list in my head of all the friends and family we knew who lived in Boston and the surrounding area. What if one of them had been killed?

I also had other worries. Two bombs going off in Boston could mean what next? Was the state under attack? Hell, was the country under attack? There were so few details at that point and living under two hours from where this attack was taking place did nothing to calm my fears.

Cell service was down at times in the Boston area. Thank God for Facebook. I was able to find out that all of our loved ones were safe and sound. Prayers thanking God were whispered. For the rest of the day and the days following, I continued to watch the story unfold. A story that is still unfolding today, almost two full weeks later.

Boston is a special place to my fiancé and I. Besides having loved ones in that area, it is my fiancé’s hometown. As a child, I dreamed of living there and any road trip east from my western Massachusetts home to see the Boston Red Sox play or to visit the Boston Science Museum was special. Over the past five years, I have spent more and more time in the city. I used to see a medical specialist there and I frequent a Sjogren’s Syndrome support group on a regular basis. Since Chuck and I have been together, we have spent a lot of time exploring the city. It helps that I have my own personal tour guide who knows how to get to almost anywhere in the city! It has become a special place for us and one that Chuck still calls home.

When the bombing happened, I felt like someone had attacked our home. I didn’t know any of the people killed or injured but yet, it felt personal. I remember the devastation I felt on 9/11 and again during the Newtown, CT tragedy, but this was different for me. This was my home state. Boston may be over an hour and a half away, but those were my people that were hurt and killed. Those were my streets that carry the red stains of blood from this cruel act.

Yesterday Chuck and I went to a scheduled Sjogren’s Syndrome support group meeting at Tufts Medical Center in Boston. The meeting was in the morning and we planned to spend the rest of the sunny day walking around the city, which included paying our respects to those who lost their lives and were injured. We didn’t know for sure if there was a place at or near the finish line site to do this but we wanted to try. Chuck printed up a photo of Boston he had taken years ago and superimposed a quote about strength and adversity over the photograph. Something that may bring a little comfort to anyone who reads it.

There was a makeshift memorial right around the corner from the finish line in Copley Square. It was quite the scene. There were still news trucks lining the street and all of Copley Square had different memorials. There were pairs upon pairs of sneakers hanging by their laces from the fence as a tribute to the runners. Flowers, stuffed animals, and Boston sports caps abound. It was truly a tribute to those fallen and those injured.

As I was walking amongst the displays, it struck me. I was shoulder to shoulder with people. The area was very crowded but yet, it was quiet. I have never been in a crowd of people that was so quiet. Copley Square, Boston and the loudest sound you could hear was just the cars driving by. You could hear the hushed whispers here and there between people. A man telling a woman that it was OK to cry. A father instructing his daughter where to place her beloved stuffed owl that she wanted to leave at the memorial. You could hear the quiet sniffles. You could see the tears falling from underneath the lower rim of people’s sunglasses.

This was a sacred space.

Copley Square, Boston is no longer a place of fear and terror. It is now a place of remembrance, respect, and solidarity.

We then proceeded around the corner to stand on the curb at the worn, painted finish line. I looked across the street to the boarded up store windows that were smashed by the explosion. I looked at the storefront of a shop where injured people made their way into after the explosion. My mind flashed back to the explosion images I had seen on television. As I stood on that curb I couldn’t help but think of how it must have felt to be one of those spectators or one of those runners.

The fear.
The chaos.

Ordinary citizens enjoying what should have been an ordinary day.

Before evil took over.

Before that evil was then obliterated by the tenacity and courage of all the men and women of Boston, Massachusetts.

I said a prayer.

After leaving Copley Square, we decided to head back towards the Boston Public Gardens and Boston Common and include a pit stop for lunch along the way. As we were strolling along the Garden, I was struck by the amount of people out and about. People from the city, and who knows where else, enjoying the warmer weather. Taking swan boat rides. Playing frisbee. Single people, couples, families, and pets just enjoying the gifts that this area of the city provides. Showing their resilience while at the same time making a very strong statement.

They were reclaiming their city. They are not going to live in fear of the evil that descended upon Boston, as well as the United States of America, on April 15, 2013. Life is going to go on and the City of Boston is going to emerge as a stronger people. So thank you Boston. Thank you for showing those of us who do not live within the walls of your city what it truly means to be tough and courageous. Thank you for showing us that in the face of evil, human compassion and love will triumph. Thank you for being “Boston Strong”. Thank you for being heroes.

Photo Courtesy of Chuck Myers: http://myerscreativephotography.zenfolio.com/

The Paleo Lifestyle

March 30, 2013 / / 8 Comments

I have made a grave oversight. I was planning on writing an update today on how the Paleo lifestyle (I hate the word “diet”) has been going for me. I was scrolling through my blog posts to see what I wrote during my first Paleo blog entry and guess what? I never wrote one!

I meant to, I really did. But I started my thirty days of a strict autoimmune Paleo lifestyle the day before my fiancé’s mother died and it was not the priority. So now I am going to give you the recap of the past two months.

I am not going to spend much time describing the Paleo eating plan because a Google search can give you more information than you ever could possibly want. Basically it means that you eat whole, non-processed foods just like our ancestors did. Meats, vegetables, fruits, nuts, seeds, certain natural oils such as olive oil and coconut oil. No dairy, grains (even gluten-free grains are off limits), legumes, sugar (except naturally occurring sugars in fruits), soy, and refined seeds oils such as sunflower, vegetable, and corn oil.  Now, I had done a ton of research about this for a good five months before I even attempted changing my eating because I was going to go one step further. I was going to do the autoimmune protocol of the Paleo lifestyle which meant I was eliminating nuts, seeds, eggs, tomatoes and all tomato based products, eggplant, alcohol, potatoes, peppers, and certain spices that are pepper based such as chili powder.

Have I mentioned how much I LOVE potatoes? And gluten/dairy-free pizza??

So I embarked on my little experiment and after the thirty days, I decided to add seeds and nuts back into my diet. Adding one food back in at a time from the autoimmune protocol list is allowed so that you can see what you can tolerate. From time to time, I will also have a pepper based spice because I absolutely love buffalo chicken; which I make at home.

I will be honest, this lifestyle change has been one of the hardest things I have ever done in my life and trust me, I have had my challenges! I went through terrible sugar withdrawals the first two weeks or so and I found it very challenging to eat anywhere besides in my own house. However I was reading anecdote after anecdote of people with autoimmune disorders who were having improvement in their symptoms by eating a Paleo food plan. If there was even a chance that I could avoid going back on steroids or maybe even become more functional because of what I was eating, I had to stick with it. The Paleo lifestyle is also not just about what you eat. It’s also about moving your body, attempting to reduce toxins in your environment, and cutting back on stress.

Before I started the Paleo lifestyle, I had been eating gluten and dairy-free for a year. While I do think that helped a bit with my symptoms, it wasn’t enough. However when I look back to what I was eating, a lot of it was processed dairy and gluten-free foods. I stayed away from anything high in fat because I wanted to lose weight. I would eat a whole bowl of rice for lunch on many days. A food that probably spiked my blood glucose levels. If you are interested in the Paleo concept, I suggest that you do some research on what causes people to get fat and unhealthy. It is not the 85% ground beef you are eating, but rather the copious amounts of starches and sugars we eat in processed foods. There is a lot of scientific theory to it and rather than pretend to know exactly everything behind it, I am going to refer you to two books that I found extremely helpful: The Paleo Solution by Robb Wolf and Practical Paleo by Diane Sanfilippo, BS, NC. And again, there is always Google!

Bottom line is that I have learned fat is not the enemy. I will admit, I am still skeptical about the whole concept, but I am going for routine blood work next month which also screens my cholesterol, triglycerides, etc. so I will be interested in seeing the results of that blood work.

I guess one of the biggest questions I get is what do I eat? I eat a LOT of fruits and vegetables and I eat a lot of meats including beef, pork, chicken, turkey, fish, and on occasion, bacon. I now eat nuts and seeds including cashew butter, sunflower butter, etc. I cook and eat only coconut and olive oil as much as possible. Some Paleo enthusiasts say you should watch your fruit intake if you are trying to lose weight but I feel strongly that I need the nutrients of the variety of fruits that I eat and my primary goal right now is to be healthy. If I lose weight, great. If not, oh well.

I have had to completely retrain my way of thinking in terms of meals. No more cereal, pancakes, or yogurt for breakfast. Often I have leftovers from dinner the night before. The variety of food I have tried in the past two months has increased by at least fifty percent. I have discovered a love for sweet potatoes and a hatred for avocados. As often as possible, I eat grass fed and wild caught meat and fish in order to avoid hormones and other nasty things that grain fed animals eat. Eating out is even more of a challenge than when I was only restricting my gluten and dairy intake but is getting easier. We don’t eat out all that often but when we do, we chose a place that will not think twice about accommodating my needs. I have to say that I actually enjoy eating out more now because I am eating higher quality food as opposed to fried and processed food.

Overall, I would say that I am about 75% compliant with eating Paleo in the past month. After the first month, I realized that I had to make this a lifestyle which meant making it doable. Progress not perfection became my motto. Most Paleo proponents state that the goal should be to be eating Paleo 80% of the time. Although my basic diet is meats, vegetables, fruits, nuts, and seeds, I do indulge in a regular meal or food from time to time but I make sure it is something I will absolutely enjoy every bite of. For example, last week I was on a six day course of steroids for non-autoimmune reasons and I decided I had to have a buffalo chicken pizza from a local establishment. And a regular beer to go with it. Typically, when I eat something non-Paleo, I still make sure it is gluten and dairy-free but I needed that one exception on that particular day. I enjoyed it and the next morning, I was right back on track. Some people may say that I am not doing the autoimmune protocol properly. I say that I am living my life.

I did a little experiment several weeks ago where I went off my Paleo eating plan. My fiancé and I were going out of town to visit family and I wanted a weekend where I didn’t want to have to think about what I was going to eat. I even ate macaroni and cheese! After several days of that, I can honestly say that I was ready to go back to Paleo. My joints hurt more than usual, I felt like I had the flu, and I was craving salads.

The bottom line is: Overall, I am eating healthier than I ever have in my entire life. I cannot remember the last time I had a bowl of rice and I don’t even miss it anymore. I am feeding my body whole, nutritious foods. And I have lost weight. Not a lot, maybe a pound every two weeks but what has been more noticeable is the change in my body shape. Fat is turning to muscle. I don’t feel bloated anymore; unless I eat buffalo chicken pizza!

More importantly, let’s talk about my autoimmune symptoms. First I have to disclose than I am also taking a new alternative medication called low dose naltrexone (LDN) which I think has also benefited me so it is hard to ascertain if the improvement is due to my diet, allergy shots I have been receiving, the LDN, or most likely, all of the above. I am currently off steroids and my other autoimmune medication, Arava. That fact is simply amazing. I do have some joint pain but this is precipitated by exercise and/or not enough sleep. My dryness symptoms have improved somewhat which was recently noted by my eye doctor. My asthma is under control and the biggest change I have noticed is an improvement in my reflux and esophageal dysmotility symptoms. Fatigue, unfortunately, is still a major issue at times. I have not noticed any improvement in my Raynaud’s symptoms. I still struggle day to day much more than the average person without an autoimmune illness but at this point, I am struggling less than last year at this time.

Now could all of this be coincidence? Possibly. Maybe I am just in an upswing with my illness. But I am going with the theory that time will tell and meanwhile, I have absolutely nothing to lose.

Why I Am No Longer Freaking Out Over Our Wedding

March 22, 2013 / / 8 Comments

Fifty-seven days until I marry the love of my life. No small feat considering over four years ago I said I was never getting married again. Ever. I would consider “living in sin”, having casual sex (sorry, mom), and/or parenting with another human being but I was never getting married again. Period.

I wonder if that is what everyone says when they divorce someone they cannot stand?

Anyways, I have written about the love of my life, aka my fiancé Chuck, in the past but a brief refresher for those of you who missed it:

Girl goes to church every week. Boy returns to church after a few years off. He goes every week. Girl and boy start getting to know each other at church events and become church buddies. After an entire summer of after church service conversations, boy and girl finally get their act together and go out just the two of them. Girl realizes that day that she never wants a life without him and apparently boy does not either. Much to the shock of half of western Massachusetts, girl moves in with boy after dating for only four months. An engagement follows one year later.

And here I am, engagement ring, venue deposits, first pre-marital meeting with the minister and all.

But here is the secret. We struggled with getting to the point of actually having a wedding day. Why? Because I wasn’t sure I wanted a wedding. Don’t get me wrong, I was all for marrying my fiancé. Him and I making a commitment forever? Perfect. Even the possibility of one single day without him in my life was intolerable. However I was very conflicted about a wedding and my idea was to elope, preferably with our minister in tow. He wanted a big wedding. I was all for celebrating our marriage and our love with our family and friends but I had serious concerns. To start with, the actual act of marrying him was something that I did not want marred by the pomp and circumstance of the wedding industry or by all the “stuff” that can come with a wedding. I wanted the focus to be on our vows, the exchanging of our rings, and our love rather than worrying about the flowers matching the groomsman’s tux or the photographer getting the right pictures.

I did not want the stress of planning a wedding. I have done it before and now I have an autoimmune illness that can be seriously exacerbated by stress. The fact that I am a perfectionist at times does not help. I did not want to spend the following year to year and a half planning every detail of a day when I could be enjoying those days doing something else or spending time with him and my other loved ones. I was also afraid that we would plan this whole special day and then my illness would flare up and I would not enjoy the day or maybe not even be there.

But here is the problem with all of my concerns. They were all about me, not him. Not only what I wanted, but what I could handle. I wasn’t considering what he could handle and what we could handle together. But we wanted two very different things, or so I thought. The reality was that what I thought I wanted was motivated by fear, not by my heart and he knows me well enough to know that. Despite my protests, he knew that celebrating with our family and friends and being married in our church, a place so dear to both of us, was more important to me than I was acknowledging. He knows my fears. He knows my heart.

After many conversations, we agreed on a compromise of a ceremony in our church and a casual BBQ wedding reception (also known as the “party”) on a different day. The separate days was Chuck’s idea as he thought it would make it more enjoyable and easier for me because of my health issues. He made me understand that the responsibility of planning this wedding would not be all on me. He wanted to be a part of every step of the process. He said it was something that we could enjoy doing together.

We set two different dates for the ceremony and the reception. A few months later, which was August, one of my worse fears came true. Due to a misunderstanding, there was a huge interpersonal conflict regarding the wedding (not between Chuck and I) and I was ready to call the whole thing off. I didn’t want something that was supposed to be so special causing hard feelings between me, Chuck and any of our friends or family. There was too many sleepless nights because of it. I was starting to feel the stress of planning the wedding and it was still nine months away. I would never make it.

We talked and talked. We even argued a bit which is a rare event. I was letting a conflict with someone else get in the way of our wedding. I was freaking out and worrying about details that were still months away. There was a point that Chuck even asked me if I was sure that I wanted to marry him because of how resistant I was to the actual wedding. I was heartbroken. Of course I wanted to marry him. This was a big turning point for me. I realized that there was no way we were going to make it to May unless I either called off the wedding (not the marriage) or made some serious changes. We made the changes.

The changes included mostly an attitude change on my part. I decided from that point on, that I was not going to let anything distract me from having this celebration that we both deserved. It was important to him and I knew that if I could get out of my own way, I would start looking forward to it as well. We made some simple changes to the day to make the planning easier. I developed the attitude that I didn’t care what happened. That may seem callous to many people but for someone who is a perfectionist like me, taking an “I don’t care attitude” brings me back to a average person’s level of caring. I have the focus that it is the day he will become my husband. Nothing else matters. We decided that our focus was going to be on the ceremony, our love, and the people celebrating with us. We would plan other things that we wanted for the ceremony and the party, but I wouldn’t obsess about the details. I would go with the flow. Something that I have learned from Chuck. Something that eventually may add years to my life.

And I have gone with the flow since then and here we are, fifty-seven days away. I will admit, it has been a bit hectic lately finalizing details and such but I can sit here and honestly say that I am extremely excited about May 18th. We have been through a lot since my meltdown in August. I did get very physically sick and ended up hospitalized and Chuck’s mom passed away, fourteen weeks before our wedding date. For me, both events have made me see the importance of sharing this marriage with those in our life. Life is short and full of bad times. We have to take advantage of celebrating all that is good in this world, especially love.

Really good things have happened in that time too. You learn a lot about person when you are planning a wedding with them. We have mastered the art of compromise. I have learned more about what makes him happy. Most importantly though, I have learned that I can put my faith in him and that he will always come through for me. My biggest fear and concern was how I was going to physically handle the planning but the fact is, I don’t have to handle all the planning. I don’t always need to be in control. We have strengthened our roles as partners. For me, the planning of this wedding has been a labor of love, faith, and trust.

I have also learned things about myself during this process and the experience has done a lot to change some aspects of my personality that could use some work. Such as my perfectionism and my tendency to worry about everything. I have been forced to change some of my ways in order to make room for better things. I know the big day is still fifty-seven days away but I am in a good place. My health cannot afford the luxury of worry or stress. That is not what the day is about and our love deserves better than that.

We had our first pre-marital meeting with our minister last week and while we were talking to him, I glanced over at my soon-to-be husband. I am not exaggerating when I say he was radiating with love. The way he looked at me reminded me of why I am so willing to compromise in the first place. The way he looked at me reminded me that I would go to the ends of the earth for him. And now that compromise is two days that I cannot wait to experience with him. His love for me and my love for him is what our wedding day is about and I cannot wait to share that with those in our lives who are so important to us.

The Smell of the Sheets

March 20, 2013 / / 10 Comments

I went to lie down on a stretcher this morning and as I got comfortable on my back and waited for the radiology technician to come back in the room, I was struck by a smell. A familiar smell. One that prompted my brain to flash various images through my head, one right after the other. Images of different procedures, some painful and some not. Images of myself sitting in a hospital bed in various rooms throughout this particular hospital where I was having my test done. Images of  emergency rooms where I have sat.

What was this smell? I finally realized, while laying on the stretcher this morning, that it was the smell of the hospital sheet covering the stretcher. All of a sudden, I realized that the smell of the hospital sheet is as commonplace to me as the smell of fresh baked cookies or bread to someone else. It is very distinct. The smell was representative of all the stretchers I have laid upon in the past several years. There are too many to count. The sheets have laid below or on top of my struggling body as I have tossed and turned in the middle of the night in my hospital room, while I have vomited on an emergency room stretcher, and while a tube has been put down my airway and into my lungs during a procedure. The smell of the sheets symbolizes my life as a patient.

I realized as I was laying there this morning that I had not smelled the sheets in exactly three months, which is when I had my last procedure or test done, excluding laboratory tests. This particular test on this morning was an ultrasound of my kidneys and bladder and was painless, as well as easy for me. Basically a walk in the park. No needles, no gagging, no fear of the unknown, as I have encountered with so many other tests and procedures throughout the past few years. But the smell of the sheets reminds me of those times and the struggles I have had.

Last fall I made a very thought out decision to see a therapist/counselor who has a specialty in seeing people with chronic illness. I was at the point where I felt like I needed some help in learning how to cope with my illness and the multitude of issues surrounding being forty-one years old and disabled. I did not like the fact that my illness seemed to consume most of my conversations with my fiancé, friends, and family. I was finding it harder and harder to discuss anything else besides my symptoms, treatments, fears, and anxiety. I wanted more out of my relationships than that. Easier said than done when you have an illness that you are physically aware of almost every minute of the day. It wasn’t that I did not want to learn more about Sjogren’s, continue my book about it, or socialize with other Sjogren’s sufferers, but rather I wanted to find a way to have Sjogren’s be a part of my life instead of the focus of it.

I was also starting to struggle with significant anxiety in relation to upcoming procedures and I was having nightmares about them as well. Not surprising considering what I have gone through in the past couple of years and even before that with my lymphoma diagnosis, both in regards to procedures and medical experiences in general. I have had incisions made in the tops of my feet and had thin wires threaded up along the lymph vessels of my legs. I have woken up during a bronchoscopy because I was not properly sedated. I have had scary experiences with my heart in the emergency room and honestly thought I was going to die. The list goes on and on.

So I have been working diligently with this therapist. I have not mentioned, previous to this posting, this fact to many people. Actually only my fiancé, parents, and minister have known. I have not kept it to myself because I am embarrassed about seeing a therapist, but I guess I did not want people to know exactly how much I do emotionally struggle with having this illness. I want to be viewed and known as a warrior; a person who can handle all this illness business without much difficulty.

Yeah, I know. That’s crap. It’s the people who know they need help that are the warriors.

I have realized recently how much working with this therapist has helped me. Many times when people have trauma issues of any type, there are certain triggers that can bring back memories and feelings surrounding the traumatic event. For me, sometimes it is the smell of the sheets. The smell that brings back those images and reminds me of the pain, fear, and uncertainty that surrounds each difficult medical event. But this morning was much different when I recognized the smell of the sheets. When the smell prompted me to play back some of the difficult procedures and medical experiences I have had, mostly over the past year, I did not have the anxiety. Rather, I remembered them just as events that took place. Events that are a part of my journey. Were the events unpleasant? Yes. But the memories no longer haunt me while I sleep.

Therapy has also made a difference in my interpersonal relationships. Sjogren’s is still a part of my conversations at times. It needs to be as it is part of who I am. However I have recently found myself able to consistently focus on other aspects of my life in conversations and dealings with others. Because despite my continued physical struggles, I no longer think of myself primarily as a sick person. Instead, I think of myself as a person who has an illness. There is a huge difference. That difference actually made me realize something about one night last week. I had attended a social event with my fiancé and five friends that lasted about four hours. Not once in that time of conversing and socializing did the topic of my health come up. That is a very good thing. Not because I don’t ever want to talk about it or have people ask how I am doing but because it means that I have been able to have a life outside of Sjogren’s.

The smell of the sheets this morning transported me back in time to my struggles, but not to my anxiety and fear. This time the smell was a strong reminder to me of my strength and my ability to endure. It reminded me that yes, I am a patient. But that is not all I am. And so I have chosen to share this experience with you. To remind you that you don’t always have to be brave and you don’t always have to be strong. It is OK to ask for help. It is OK to be human.

Low Dose Naltrexone Update

February 23, 2013 / / 11 Comments

It’s Saturday morning and a perfect time for blogging. Life has settled down quite a bit here over the past few days. Life has been nothing but complete chaos and stress since about November and despite the fact that I think I have handled the stress fairly well, I am praying for no more crises for at least the next few months. The rest of the year would be nice too!

I have been playing catch up this past week with a lot of things I have neglected as of late, namely wedding planning, housework, and agent hunting for my book. More importantly, I have been trying to catch up with those friends and family that I have been neglecting and I am slowly but surely accomplishing that. I also have a list of health related blog topics in my head that I really want to write about as there has been so much going on and I think that the experiences I have been having might be useful for people to read about.

I think today I am going to start with an update about how I am doing with taking low dose naltrexone (LDN). I have been getting e-mails from people asking me if the LDN is working, if I am having any side effects, etc. The first post I wrote about LDN you can find here: Low Dose Naltrexone. If you have an autoimmune disorder, I think the post is worth a read. LDN is also being used for other illnesses other than autoimmune diseases but I try to write about what I know based on my experience and that experience is with taking LDN for Sjogren’s syndrome.

When I wrote the first blog entry about LDN, I was five weeks into taking it. Now I am about ten weeks into it. Since the five week point, I have been able to completely finish weaning off of prednisone. This was no small feat mind you. I had been taking prednisone for about fifteen continuous months, with the exception of one month where I had weaned off and had to go back on it. I did have some difficulty coming off the prednisone and the withdrawal symptoms were tough for the first two weeks or so, but my body seems to be slowly adjusting.

Before I came off the prednisone, and while on LDN, there was a period of about three weeks where I was feeling amazing. I mean, AMAZING! I went into my rheumatologist’s office for a routine appointment and told her that I had not felt that way since before all this autoimmune fiasco began, which was five years ago. Can you imagine feeling like yourself for the first time in five years?!? It was incredible.

However of course that did change when I stopped the prednisone but I am trying to be patient and give my body the time it needs to adjust. Part of thinks that it would have been nice to not have messed with the prednisone and enjoyed feeling good for a while longer. However the other part of me felt stronger that I did not want to be dealing with prednisone withdrawals and possible flare up issues closer to my wedding, which is three months away. This weekend it will be one month I am off the prednisone and that is usually my tipping point for things to go awry so I am crossing my fingers. Speaking of awry, at this point I am only having two issues, severe itching and hair loss. I thought the issues were related to coming off prednisone or perhaps even related to an autoimmune flare starting, but it appears this is probably not the case. I will hold off on the details of that situation for now until I have more information.

Overall, I think the LDN has had a positive effect on my autoimmune symptoms. When I came off the prednisone, my migraines initially got worse but are improving with the help of a supplement I was given by my integrative medicine doctor called petadolex. I have begun to have some minimal joint pain in the mornings that quickly goes away but other than that, I seem to be holding steady in regards to my pain levels. I have managed to wean off my steroid inhaler and currently take no medications for my autoimmune related asthma. That is a big deal. I am off my prescription migraine medication, another autoimmune medication called Plaquenil, and a medication that was being used to stimulate saliva called pilocarpine. I have noticed a small improvement in my dryness symptoms. My use of pain medication and Motrin has decreased.

I am able to do short periods exercise on a regular basis and am having less painful after-effects of the exercise as compared to before LDN. With the exception of the time period after I stopped prednisone, I have noticed an improvement in my mood and anxiety levels. I have not noticed any improvement in my esophagus/swallowing issues since starting the LDN. I had a few meals where I forgot to take my Procardia, which enables me to swallow more easily, and I immediately regretted not taking the medication. The LDN also has not made a difference in my reflux issues. The debilitating fatigue that I experience improved initially but I have been struggling with my energy levels since coming off the prednisone.

The only side effect I have noticed from LDN is insomnia. It has improved over the past month to the point that I am willing to continue riding out the side effect because the benefit is worth it right now. I am experimenting with some different natural solutions to this problem and it is also worth noting that I was having some insomnia issues prior to starting LDN.

So that is the scoop. I do have to mention that in addition to starting LDN, I have also begun going for allergy shots every week and have drastically changed my diet to an autoimmune protocol of the Paleo diet. However I did not start either of these treatments until after I had that three weeks of feeling great so I do strongly believe that the LDN has been a contributing factor in some of the improvements I have experienced. I am still on 3mg and am holding off on going up to 4.5mg until my insomnia is more under control as lack of sleep is a huge trigger for autoimmune symptoms.

Am I still skeptical? Sure. The improvements I have had could be a fluke but I don’t think so. I do think it is a situation where time will tell for sure. My goal is for LDN to keep me off the steroids. If that is the only benefit I get, it will be worth it’s weight in gold.

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