Saturday, February 23, 2013

Low Dose Naltrexone Update

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.

Tuesday, February 19, 2013

Ushering Them To The Other Side

Do Not Stand At My Grave And Weep

Do not stand at my grave and weep,
I am not there, I do not sleep.
I am a thousand winds that blow.
I am the diamond glint on snow.
I am the sunlight on ripened grain.
I am the gentle autumn rain.
When you wake in the morning hush,
I am the swift, uplifting rush
Of quiet birds in circling flight.
I am the soft starlight at night.
Do not stand at my grave and weep.
I am not there, I do not sleep.
Do not stand at my grave and cry.
I am not there, I did not die!
Mary Frye (1932)

One of my biggest fears is dying. It always has been. To be honest, I am not sure if my excessive fear is typical because nobody ever talks about it, at least not in my social circle. I hear all these stories of how people have made their peace with the fact that they are dying or going to die and I cannot wrap my head around that. I do admire and respect these people because to me, it seems like they have a strong faith; one that gives them the courage to face what may come next. I wish I had that courage when it comes to death and dying.

It's not like I have lived this sheltered life of perfect health and harmony. I have had experiences that have had the potential of ending up on the other side: a cancer diagnosis, a car accident where my life flashed before my eyes as my car slammed into a guardrail several times on the highway, a heart procedure that came with all the usual risks. There have been occasions where I have considered the possibility of ending my own life. Seems ironic that I would consider that idea considering my fear of death, but people think all kinds of crazy things when they are in desperate situations.

I think my fear has to do with the unknown of life after death. Despite my Christian beliefs, I do not feel one hundred percent assured that there is this eternal life after we leave our body. Or maybe a better way to put it is that I don't know what this eternal life truly looks like. What does it feel like after you die? Do we feel anything? Do we have internal thoughts like we have now? Are there bright lights and angels singing when our soul ascends into heaven? What if there really isn't a heaven? Too many unknowns for me. Maybe not enough faith.

I had the opportunity recently to be with someone as they died. I had never experienced that before. I have had people close to me die, but I was never present when the actual event took place. For weeks, I have been trying to gather my thoughts and words together to describe how being present with someone you love, as they leave this life, can change a person but the words would not come through the wall of emotional grief that still sits in my heart and my mind. Hence why this entry feels so disjointed to me. But I know that some of the words have to be written because until I get them down, I will not be able to write about anything else.

People talk all the time about the wonders of being born. The miracle of life. A new baby signifies joy and happiness. People gather around the new baby and usher him or her into this world with love and devotion. My experience of being present with my mother-in-law as she died was that the process of dying and death itself deserves just as much love and devotion as the process of being born. However I am not sure that most of our culture recognizes that fact. Maybe because to most of us, it is such a sad event. Maybe because we are already mourning our own loss. But it's not just about us and our own loss. It's about the person who is dying. Their needs. We are not alone when we are born. I think we should not be alone when we die. Unfortunately, we do not get to choose how or when we die so oftentimes, dying alone is inevitable.

I watched my fiancé and one of his sisters keep vigil at their mother's bedside for well over twelve hours before she left us. One of them on one side and one on the other, always touching her in some way. I watched, while stroking her head, my mother-in-law take her last breath. A moment that is permanently etched in my memory. A memory that often comes back to me in my dreams, or even sometimes as a nightmare. But as difficult of a process as it was to be involved with, I saw during those twelve plus hours that it wasn't just the sadness that filled that room, but the love. The love between a son and his mother. The love between a daughter and her mom. The comfort and love that was unfailingly given to my mother-in-law during her last hours was just as important, probably even more important, than the love she received the day she was born.

I have come to recognize that being with a person as they prepare to leave this earth is a privilege and one of the greatest things that we can do for another human being. Is it gut wrenching and one of the most difficult things one might ever do? Absolutely. But it is an opportunity that many people do not get. An opportunity to remind your loved one how much they are loved because I truly believe that your words are heard. It's an opportunity to say goodbye. It's an opportunity to gracefully usher a person to their final destination.

To be honest, it has taken me some time to get to this perspective. The visual images of my mother-in-law in her last hours still weigh heavy in my mind when I least expect them to. However when I consciously and intentionally think back to that day, it is not the memories of her physical state that jump to my mind first. No, not at all. It is the other things. Hearing the quiet whispers of reminiscing between my fiancé and his sister at 3am as I nodded off in the empty bed beside them. The loving words spoken by my fiancé to his mother. The image of my sister-in law holding her mom's hand. The movement of my mother-in-law's hand indicating that she could hear us. The grace and strength that my fiancé demonstrated. My own strength. The moment that she did not take another breath after hearing her breathe for twelve hours; the sign that she was finally at peace.

I pray for my mother-in-law that she is in a much better place, wherever that may be. A place where she experiences no pain, disappointment, sadness, or loss. A place where she can rest and be filled with all of the happiness and joy that she so richly deserves. A place where love constantly surrounds and cradles her. A place that perhaps may be called, heaven.