For Everything There is a Season

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

Page 21 of 43

Embracing Prednisone

June 24, 2013 / / 5 Comments

I am back on prednisone. There, I said it. Anyone who follows my blog knows how I feel about prednisone. It is a miracle drug and a drug from hell all mixed into one small white pill. Over the past four years or so, I have been on it more than I have been off it. However since I started seeing an integrative medicine practitioner last November, I was able to wean off prednisone at the end of January and have been off it ever since. Folks, that is the longest I have ever been off of it; FIVE whole months!

Now, I  saw my rheumatologist in April which was about a month before my wedding. Because of the increase in joint pain, she wanted me back on 10mg of prednisone or Arava. It was my choice based on the side effects. I gave it a lot of thought, gave it another week, and decided to hold off. And no, I never called my doctor. I am not an advocate of going against doctor advice so please don’t leave me comments saying I give bad advice. People have sent me those types of comments and e-mails. I did what I thought was best for me. Maybe I will be right. Maybe I will be wrong. I followed up with the integrative medicine doctor, I clamped down on my diet, and my pain got better. I made it through both days of my wedding very successfully.

After the wedding, it looked to others I was doing well and I kind of was, to a point. But I was having issues. I think what was really happening was because I was feeling better, I was more active which then caused my symptoms to flare. Also mentally, I am coping MUCH better with my symptoms, especially my pain. And that makes a big difference. So whereas before I would go back on prednisone, I really tried to tough it out. I spoke with my integrative medicine practitioner again because the amino acid supplement dose she had me on was doing wacky things to my body and I had to come off it completely to make sure that was the issue. My hormones had gone bonkers and she told me that this could happen. The mood swings were enough to make me stop the amino acids temporarily at least. However she did add in an anti-inflammatory supplement called boswellia and then told me it was going to take about a month to work.

Shortly after this appointment, I realized that things were still getting worse. Now “worse” for me is all relative. Even though I was doing “worse”, I was still functioning much better than last year. However my fatigue had come back with a vengeance, I constantly had pain, tenderness, and swelling in my glands around my face, less exercise tolerance in terms of joint pain, and the issues with my bladder, which I still have to see a urologist for, intensified. My option was to call several different specialists about each issue or just go back on a course of steroids to see what improved and what did not.

Luckily, my rheumatologist is flexible about my dosing of prednisone and when I take it. She makes suggestions and also relies on me to figure out what I need depending on what is going on at the time. That is hard for me sometimes. While I appreciate the flexibility, I am stubborn about being on traditional medications because I know that most of the time, the side effects can be just as bad as the Sjogren’s symptoms. I have a lot of arguments with myself about the prednisone. I still feel very strongly that it is NOT the answer as a constant modality of treatment for Sjogren’s syndrome because it suppresses your immune system. It does not treat the cause of the illness. That being said, I think that when you are in an acute situation, there is a definite place for it. The problem for me is trying to decide when I am in an acute phase. Having a serious asthma flare or joint pain so bad I cannot walk is acute but I also think that maybe when there are several less critical autoimmune issues going on at once, my body is telling me that it desperately needs to bring the inflammation down.

I struggled with the decision to go back on prednisone because I felt like I had come so far with my alternative treatment. I also do not want to go back on the medication regularly. But then I realized that enough was enough. I needed to do something to get me through this period of time until the integrative medicine treatment plan was more effective. I was also concerned not just about my pain levels, which for the most part I was coping with, but about the possibility of what the disease and inflammation was doing to my organs. I decided to start myself on 20mg and do a one week course by starting at 20mg and tapering down every two days until I reached 5mg and then stop. Typically prednisone needs to be weaned down slowly but this is only if you are taking it for two weeks or more. I have done steroid tapers like this before for my asthma and also for severe allergy issues.

Today is Day Four and I am so grateful that I put my negative feelings about prednisone aside to try this course of treatment. I have never started at this particular dose or done the tapering exactly in this fashion. The 20mg has been enough to settle things down quite a bit but not enough to send me bouncing off the walls in a constant mood swing. I am still sleeping well and although I am a little hyper, I can sit still and rest when I need to. I am not even sure I am hyper as much as I am just feeling normal and like I have enough energy to get through the day. This has by far been my best experience with prednisone. Until I started this week course of prednisone, I did not fully appreciate how bad I was feeling. I was getting through it because my mental state was in such a good place. The gland swelling and pain is almost gone, my joints, especially my shoulders, are dramatically better, and I am not in agony when I go to the bathroom. I don’t know what will happen when I come off in a few days but I am hoping for the best. Because if the best happens, then I have a new way to use prednisone for when things get really tough and unbearable. Or for when I go on our honeymoon to Disneyworld in September.

Now if I go through this week’s treatment and things get bad again, I will have to discuss this with my integrative medicine practitioner and my rheumatologist. No matter what, I still have to follow up with the urologist. But meanwhile, I have helpful information to pass on to him about the prednisone helping that issue.

I guess what this current run with prednisone is teaching me is that my medical treatment does not have to be all black and white. It doesn’t have to be the doctor’s way or my way; the rheumatologist’s way versus the integrative medicine practitioner’s way, and it doesn’t have to by high doses of prednisone versus nothing at all. It’s about listening to my body and trusting myself. It’s about trying to combine the best of what integrative medicine and traditional western medicine has to offer while aiming for the one most important goal: to get my body to a level of functioning that is sustainable and tolerable to me as an acceptable quality of life. I know I will never not have Sjogren’s; it will never leave me. But meanwhile, I will continue to do my best to optimize my health and give myself the best life possible.

Yoga and Me

June 21, 2013 / / 0 Comments

Sometime in early May I started taking yoga classes at my gym. I had been wanting to try the classes for quite a while, for almost a year, but never had the guts to get myself there. I had taken a few classes about ten years ago but became so frustrated with it that after three classes, I stopped going. I think my frustration was with the fact that I couldn’t do most of the poses that were demonstrated. I felt awkward and fat. There was nothing peaceful or relaxing about that for me.

I decided several weeks before my wedding that it would be a good time to try yoga again because from what I had learned, it could really help with stress management. And I was trying to stay as calm and collected before the wedding as possible. Especially because stress exacerbates autoimmune symptoms. I was still self conscious about trying it because in my delusional mind, yoga was for fit people, not someone who at one point was seventy pounds heavier, still overweight, and had the joints of an eighty year old. However the gym I go to has several different levels of yoga classes that are included in my membership fee. I figured that I had nothing to lose if I tried yoga again; except for maybe my pride.

The first class I tried was called Yoga Fusion and was a combination of yoga and Pilates. I thought this was a logical place to start because I had been doing Pilates classes whenever my body could tolerate it and I really enjoyed Pilates. I was wrong. Yoga and Pilates in the same class is very hard, especially when you do not have a good grasp of the concept of yoga to being with.

So I tried a different class called Gentle Yoga. This particular class is offered at my gym several times a week. Currently I attend classes with two different instructors and both of them are fantastic. They are patient, helpful and never once have they made me feel like I don’t belong there. I accept their correction in my poses without hesitation and every week, I learn something new.

Gentle yoga was the right choice for me because now, I am hooked on yoga. Typically, in one of the two classes I attend, I am the youngest person in the room. At first, part of me wished I could do a more advanced class and not feel like my body was at least thirty years older than it actually is. However this is one of the lessons and gifts that yoga has given me: it is helping me to fall in love with my body and to have more of an appreciation of what it CAN do. And realistically, my body cannot do more yoga than a gentle class. Even the gentle class is very tough for me at times because a lot of the postures require me to bear a lot of weight on my most troublesome joints, including my fingers, wrists, and shoulders.

But I keep going. This is still relatively new to me and I am hoping that as time passes, my joints and muscles will become more accustomed to what I am trying to do with them. Typically, even when I go to class in pain, I leave in much less pain. The problem is about 12-24 hours later when everything tightens up and my joints feel the effect of all that weight bearing. However I agree with the philosophy that consistent exercise is more beneficial than harmful to my joints, so I keep plugging away at it.

I also find yoga difficult at times because it is hard for me to coordinate the breathing aspect of yoga with learning and performing the postures. That being said, it is well worth the effort. I have noticed a definite improvement in my overall well being since starting yoga. I have also noticed that on the days when I go to class, I have more energy than I typically do. I cannot explain it or do it justice but yoga appears to give me a sense of serenity and calm that I very much need in my life. When I am sitting there breathing and holding a posture, I am not thinking about the things that my body cannot do. I am not thinking that I feel fat or that I don’t look like a stereotypical yoga groupie. Most of the time, I am just thinking about how the hell I am going to keep that posture up before I collapse or topple over. And yes, that has happened!

But seriously, yoga is a powerful form of exercise that is helping me to be more accepting of my body. I talk a good talk about how we should all be accepting of our bodies and I do firmly believe that. But I do not always practice what I preach when it comes time to look at myself in the mirror. Somehow, yoga has helped me to look in the mirror and now sometimes be able to look at the positive aspects facing back at me rather than looking at my body with contempt and disdain. I see the upper arm muscles that have toned up. I see muscle definition in my legs as they appear smaller than a few months ago. Most importantly, I feel more at peace with who I am as well as who I am becoming.

Why I Am Not Mrs. Myers

June 8, 2013 / / 4 Comments

Not too long ago I posted on this blog’s Facebook page that I was not going to be changing my last name when I got married. I had varied responses to that news and differing opinions not to what I should do, but to what others would do. It was very interesting to hear various viewpoints on this issue.

Since I got married May 18th, it has become quite apparent to me how many people, those who didn’t see that Facebook post, have naturally assumed that I am now Mrs. Myers (my husband’s last name) or Christine Myers. Technically, Mrs. means “the wife of” and I take absolutely no offense to that. I am his wife and very proud of that fact.

I have done a lot of reading on this subject, mostly because I truly struggled with the decision and because it interests me as to why some women change their birth name when they get married and why some don’t. According to the Huffington Post in an article posted April, 2013, only 8% of women now keep their last name after marriage. This is down from 23% in the 1990’s. Although it appears that as a woman who kept her birth name I am in the minority, I don’t think any woman really takes that decision making process lightly.

My name history is as follows. I was born Christine Jeanne Molloy. My dad picked out my first name. My middle name is my mother’s first name. My last name is an Irish surname that represents my grandfather’s family who originally migrated from Ireland to Newfoundland and finally to Massachusetts. When I married my first husband in 2000, I changed my middle name to my birth name (Molloy) and assumed my ex-husband’s last name. By the time we separated in 2008, I was counting the days until I resumed my birth name once again. The biggest reason for that was because I felt that in the years I was married, I lost my identity and I regretted ever changing it in the first place.

When Chuck, my current husband, and I were discussing this issue months ago, he made it very clear that it was my choice. I struggled with the issue enormously because I could make a case to go in either direction. There was a part of me that wanted to take his last name so that we would be identified as a married couple. At first I thought that taking his name would represent our togetherness and our love.

Although I believe in women’s rights, I am not a woman who would be considered a staunch feminist. One of the arguments that is made about women who do change their name when they marry is that if a woman does change her surname, it implies she belongs to a man or another person. That we, as women, need to keep our name in order to not lose our independence. I read that in an article; more than one article actually. I disagree with the fact that changing your name causes you to lose your independence. I also disagree with the fact that changing your name implies you belong to a man. Because no matter what your choice is in regards to your name, the fact is you DO belong to another person when you marry them. Not in a possessive way but in a commitment way. My heart belongs to my husband and just as much, his belongs to me. It has nothing to do with what names we choose to go by.

OK, so then why did I decide to keep my name? Because to start with, it’s my name. I am Christine Jeanne Molloy. The person who with all her strengths and weaknesses, is a person who is proud of who she is. Christine Myers didn’t graduate from nursing school. Christine Molloy did. Christine Myers didn’t survive cancer. Christine Molloy sure as hell did though. Some people might be asking now then, why did I change my name the first time I got married? Because I was 29 years old then, not 42. A lot of how I think changed during those years and I thank god for that.

I did have someone ask me before I got married if I thought I was afraid to change my last name again because of how lousy my first marriage, especially since I was so eager to get my birth name back. I did seriously think about that question because when you are marrying for the second time and the divorce rate for second marriages is around 60%, you need to be honest with yourself and make sure you are carrying as little baggage into a marriage as possible. What I realized was that if I had never been married before, I still wouldn’t change my name now. It’s not fear, just a different viewpoint.

I joked with Chuck when we were having this name change conversation about why couldn’t the expectation be that the man changes his last name? I never in a million years thought he would consider that. But he surprised me. He said that if he didn’t have children who shared his last name that maybe he would consider the possibility. However after I thought about it some more, I realized that for all the same reasons I wanted to keep my surname, so would I want him to keep his. It is who he is and it is where he comes from. I would never want to change that.

This last name issue is my personal decision. I know people who have kept their birth name, have assumed their spouse’s name, have hyphenated the two names, have used two names, and who have completely changed their name. I have no issue with any of those decisions. I don’t disagree and honestly, it doesn’t even matter to me. What does matter to me is how I feel about who I am. Once we stop worrying about other’s people’s choices and focus on our own decisions, the world becomes a much better place to live in.

I did a bit of reading this morning about this issue because one of the questions that was presented to me is how should I be identified in say, correspondence for example? For me, anyone that bothers to send us correspondence, such as an invitation, will not be scrutinized. According to various websites the proper format is to address us as follows:

Ms. Christine Molloy and Mr. Charles Myers

Apparently the woman’s name always comes first and the “and” is important. The “and” indicates that the couple is married. If the couple was not married, their names would be listed in a column format like this:

Ms. Christine Molloy
Mr. Charles Myers

So what would happen if someone sent us an invitation or piece of mail that looked like this?

Mr. and Mrs. Charles Myers

That’s great! While my name is not Christine Myers, I am “the wife of” Charles Myers so no, I wouldn’t have a hissy fit. Because most likely, someone just didn’t know about my decision to keep my name. And again, I am the “wife of”. It would be funny though if we received mail that looked like this:

Mr. and Mrs. Christine Molloy

Throughout this process I have learned that the name I have in no way represents the strength or quality of the love I have for my husband. Anyone who was at our wedding ceremony for at least 30 seconds would have seen that with their own eyes. I have also learned that when I listen hard enough to my own gut, the answers are right there. The day we went to apply for our marriage license there was a space that said “surname after marriage” or something to that effect. I realized that I had not 100% made a decision in my mind before we went to the town hall. And then it happened. My heart said to write Molloy and before I even had a chance to question it, my pen was on the paper writing the letters that have forever known to be a representation of who I am: Christine Jeanne Molloy.

Photo Courtesy of: irishsurnames.com

Our Wedding Ceremony

May 24, 2013 / / 12 Comments

“I promise to always be your best friend. The person you can count on to confide in and to lift you up when you are down. I will be the gentle hand in the middle of the night and your port in every storm. I promise to do my best to make the rest of our lives together full of joy and laughter. I will always honor our marriage and I will love you all the days of my life.” ~ Me
  
 
May 18, 2013

Until that day, I never believed that there was such a thing as a perfect day. I wasn’t looking for perfection. At some points in the seventeen months preceding that day, I was just looking to make it to the day in one piece.
 
Until that day, I never believed it was possible to live so fully in the moment that my mind could be free of any other thoughts.
 
Until that day, I never quite fully understood the magnitude of the love that surrounds my husband and I.
 
May 18, 2013 was our wedding day. For those of you who know me or follow my blog on a regular basis, you know that it was no small feat to get to this day. 2012-early 2013 plagued my husband Chuck and I with crisis after crisis; from me being almost paralyzed and then developing life threatening blood clots in my lungs to the illness and death of Chuck’s mother. There was also a lot of other bad stuff in between. Yet despite those events, we continued to plan our wedding day. We felt it was important to celebrate our love with those in our lives. We had made a decision to split up the ceremony and reception into two separate events to make it more manageable with my autoimmune illness. The reception is still to come on June 1st.
 
 
I have always been a big believer in the fact that it is the marriage, and not the wedding itself, that is the priority. Keeping that attitude in mind, I approached May 18th with a fierce determination to not allow myself, or us as a couple, to lose sight of the significance of what we were doing. And like all weddings, there were issues. Due to ending a friendship, I lost a bridesmaid two months before the wedding. There was a phone call less than 72 hours before the wedding that none of the flowers I had picked out for the groom and groomsmen were available. People I was expecting and hoping would attend were either unable to attend for various reasons or made a choice not to attend.  But when I woke up that morning at 5:30am, none of it mattered. What did matter was that by 1:45pm, this man whom I love with every fiber of my being, was going to be my husband.
 
 
I will admit, the day before was tough on me physically. Everything went very well; we got the church parish hall dining room set up like we wanted for the dessert and coffee hour we were having after the ceremony and the rehearsal/rehearsal dinner went off without a hitch. But the day was a busy one and we were both exhausted. Chuck spent that night at a hotel because he knew it was important to me that we not see each other before the ceremony the next morning. My friend Nicole, who was a bridesmaid, stayed overnight with me but unfortunately I was too exhausted when we got home at 9pm from the rehearsal dinner to even be social. Sorry Nicole!
 
 
The next morning found me spending three hours at a salon with Nicole and my maid-of-honor, Chuck’s daughter Stephanie. It was a beautiful day out. 73 degrees and sunny with a slight breeze. I was a bit nervous, probably more from anticipation than anything else. I truly enjoyed this time at the salon with them and their excitement was evident. They were amazing as they ensured that every single detail was attended to and I honestly felt that if something bad went down, it would be handled. By the time we got to the church, ten minutes before the start of the ceremony, my nervousness had dissipated and I was excited to see Chuck.
 

 I was having a small issue with my dress and we changed our plans and got to the church earlier than planned. Because it was not yet 1pm, we went to the parish hall to recheck my dress issue and wait. Our parish hall is across the parking lot from the church and I was standing in a room looking out the window to the church and parking lot. It was such a surreal experience to watch our guests come in. Everyone looked so happy. I mean, seriously happy. I stood there and wondered – how did I get so blessed?
 
Chuck and I had put in a lot of thought and effort into the ceremony itself. We wanted it to be personal and we wanted it to convey our love to those in attendance. The ceremony started off by Nicole and Stephanie going down the aisle, escorted by my brother Dennis and one of our friends, Lou. The song was Can You Feel The Love Tonight? by Elton John. Then came a moment we had kept secret from as many people as possible. Chuck played and sang Marry Me by Train as I came down the aisle. It was such a beautiful moment. The guitar chords can be a bit tricky and I know he had been working on the song for months. He did such a great job and I honestly don’t know how either one of us got through the song. It was amazing to see the faces of our loved ones as I walked down the aisle. It was amazing to see my stoic dad with tears in his eyes.



Smiles.
Tears.
Joy.


Since the ceremony, I have had several people mention one word to me and that is: radiant. People thought I looked radiant. The thing is, I felt radiant. At the risk of sounding arrogant I am going to mention that although we only have a small portion of our photos back, there is not a bad photo of me because so far, there is not one where I am not smiling. I just felt so content, so blessed, and so at peace. Funny how true love can do that.


We began to progress through our ceremony. We each had written our own vows. We had asked a couple that we are good friends with, and who have been married for 39 years, to speak about marriage during the ceremony. Our friend, Tom, sang You Raise Me Up during communion. Communion is not an event that many people in our faith incorporate into their wedding ceremony but it was important to us. We elected to present communion to our guests ourselves so I held the (gluten-free!) bread and Chuck held the wine (aka grape juice). Although I had cried before this point while I was saying my vows, it was communion that almost did me in. One of the first people to come up was my Auntie Helen and she was bawling. I could feel her love for us through her tears. And getting to see everyone as they came to the communion table was overwhelming because of the genuine joy and love on their faces.

The ceremony finished up and we exited the church to the sounds of our friend Dan playing We Are Family on the piano. We rang the church bell on the way out.  A receiving line followed and then down to the parish hall dining room to spend time with our loved ones. It was wonderful to be able to see family and friends that I had not seen in a while. We got home around 4pm and immediately finished packing to go away for a few days. Our Disney honeymoon isn’t until September but we wanted to get away and decompress for a few days. That blog will be in the near future hopefully!


If I could sum up the entire day in one sentence I would say this: it was the best day of my entire life. Shocking considering that initially, I really wanted to elope! And I have had some amazing days: the day I graduated from nursing school, the day that Chuck proposed, the day that I found out I was cancer-free, and even the day I was married the first time. But right now May 18th is the best day. The main reason is because of the fact that the day represents that I found and have been blessed with this great love. The man that I feel privileged to spend the rest of my life with. On that day we outwardly got to celebrate our love and the union of our two lives and of our families. The day represented our willingness to work through difficult times and issues in order to commit ourselves, before God, to each other.



It was the best day because of the people who surrounded us and the wedding represented all of the support we have received both individually and as a couple from family, our church family, and our friends. I have so many snapshots in my memory bank of people. I have often told Chuck that when I am in a bad situation with my health and I am feeling down and sick, I often play back positive images in my head of good times we have had together and it helps to relax me and helps me to refocus my energy. Typically it is a memory of Chuck and I on the beach in Maine or some other happy time where I felt loved and safe.


The people in our lives have given me a new image.
The one from our wedding ceremony.
The one where I see their faces and feel their love.
The one where I hear words of joy and sounds of laughter.
The one where I feel an abundance of love, hope, joy, and peace.



I am grateful for this incredible day that we had together. I am grateful for every moment that I chose to not give up on true love. Most importantly, I am grateful for my husband and the beginning of the next chapter of our lives together.


Photos Courtesy of Susan SB Photography: https://www.facebook.com/SusanSBPhotography/info

Keep Going

May 13, 2013 / / 12 Comments

There are very few people who follow my blog or who are even in my life who know the extent of the disaster my life was from about 2001 through 2009. I was in a destructive marriage with a man who was abusive, an alcoholic, had PTSD, and was just a difficult person to live with. A man who decided about two years into our marriage that he did not want children. I had distanced myself from some of my family and many of my friends. I held a job that I loved but yet found very stressful. For some of those years I was seventy-seven pounds heavier than I am now. I had a food addiction and low self-esteem. There were many times when I considered suicide and the threat was real enough that I was hospitalized several times for depression. For a period of time, I was even considered to have bipolar disorder and I was trialed on every class of psychiatric medications that existed. The diagnosis was later retracted by the same psychiatrist who diagnosed me and my mood issues were thought to be the beginning of my autoimmune disorder, coupled with significant environmental stressors. Then the physical symptoms of my autoimmune illness began.

2008-2009 found me very sick with Sjogren’s syndrome. I eventually ran out of sick time and FMLA and lost my job. On the day that my ex-husband threatened me and I thought he was going to be physically violent because he was so drunk, I told him we were done. I got divorced and lost my home. I lost one of my beloved dogs. No job, no home, no kids, no health, no marriage…no nothing.

But wait, I did have something. I had God. I had my family. I had a few friends.

I had myself.

So why am I even bothering to tell you all this six days before I marry my second husband? Because I want people to know. I want to tell anyone reading this who thinks that the only way out is through suicide that there is always a better way out. There is help out there. You can change your situation. The feeling of hopelessness you have now does not mean that things can not get better.

My upcoming marriage has stirred up a lot of emotions recently. Obviously that is due in part to the fact that I am marrying this incredible man who is my best friend and whom I love with all my heart. But the emotions are also there because over the past few weeks, I have stopped to think about where I am and how far I have come. Because at some point I stopped letting myself be a victim. I dealt with my depression and anxiety. I saw a therapist. I developed a positive attitude. An attitude that got me through some pretty dark days. I worked on my relationship with God and with myself. Step by step I made changes in my life that enabled me to be a whole person rather than the empty shell of one that I was during those years.

I still struggle with health issues. I still struggle at times with my self esteem. But at the end of the day I like the face of the person looking back at me in the mirror. Sometimes it is hard for me to think back on the past and even believe that was me. However I have to look back from time to time because those experiences have helped make me the courageous and determined individual I am today.

I am at peace.
I am happy.

So please don’t give up. You are worth more than the sum of your bad experiences. God has put you in this world for a reason. The reason may not be apparent to you now. It may never be apparent to you but I promise you, your presence in this world will make a difference to somebody.

Be strong.
Keep going.

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