For Everything There is a Season

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

Page 23 of 44

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.

Ushering Them To The Other Side

February 19, 2013 / / 2 Comments

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.

Mother By Chance…Mother Through Love

January 21, 2013 / / 4 Comments

“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.

But…
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.

Road To Marriage

January 14, 2013 / / 2 Comments
 
“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.

Nice.
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.

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