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

Category: attitude (Page 1 of 2)

Accepting Sjögren’s

I wasn’t planning on doing any writing today but to be honest, I need to write. Actually, there are many times that I need to write. I cannot even tell you how many times I come to this blog to write about how I am feeling regarding living with this illness and instead of blogging, I close down my computer and walk away.

Why?

Because I feel like I don’t have anything positive to say.

And it has come to my attention lately that this is probably not the healthiest way to deal with the psychological impact of having a chronic illness. Of course, I already knew that fact, but I never seemed to think that it applied to me. I thought that the best way for me to get through day after day with this heavy burden that is called Sjögren’s syndrome, was to stay upbeat and positive.

Put on a smile.
Be grateful for what you have.
Make the best out of a lousy situation.
Hell, write a book about it even!

And you know what? I DO believe that keeping a positive attitude is a key element to living well with chronic illness, no doubt about that. However, I now realize that in my efforts to keep myself from getting down and out, I have placed this unrealistic expectation on myself that I need to be upbeat and positive all the time when dealing with others, especially in my writing. I try very hard not to complain whether it is online on social media, or with my friends and family. And I think that is a disservice to us all.

The exceptions to this are my husband, my parents, and my brother. They get the real deal, 24/7. Why? Because they are “safe”. I don’t worry that they will judge me, end a friendship with me, or realize that being in a friendship/relationship with someone like me can be really hard at times. It is not for the weak or for those who cannot handle the unpredictability of what this illness brings. They see me at my worst and love me anyways.

But, living like that is exhausting.
And I cannot keep it up.

I am here to tell you that Sjögren’s syndrome sucks. It is this pervasive and debilitating illness that NEVER gives you a day off. Every single morning I wake up knowing that at the age of 43, I am never going to have a day again where I am completely healthy. It will never go away. It will follow me every single moment of every single day until the day I die. And hopefully, that will be because of old age, and not because of Sjögren’s complications.

That is not a negative attitude.
That is called acceptance.

Acceptance is what frees you. It is acknowledging the reality of the situation while at the same time, making a plan to live as wholly and completely as you can, despite it all. It is knowing that you can do anything you set your mind to while at the same time knowing that doing some things are not worth the price you will pay in the end.

Acceptance is being your genuine self. Not pretending to be fine when you are not. Knowing the value of letting people see how things really are. How exhausted you are or how much pain you are in. How discouraged you are when you spend half of your work week in doctor’s appointments.

Acceptance is having and using the ability to say “no” to people and requests, especially the ones that come from people who don’t try to understand, or maybe don’t even care about, your limitations or restrictions. Maybe its saying no to a trip that you know will be difficult or a stressful situation that may exacerbate your symptoms.

So I am going to work on acceptance and I will forewarn you, it probably will not be pretty at times. It will involve being more honest and I’m sure, using more swear words because that is just what I do. I am aiming for progress, and not perfection.  Maybe you can too…

Keep Going

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.

Why I Am No Longer Freaking Out Over Our Wedding

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.

Trusting My Body Again

“Movement is a medicine for creating change in a person’s physical, emotional, and mental states”. ~ Carol Welch

It is two o’clock in the morning and I have to go to the bathroom. I try to get out of the bed and realize that I cannot physically get my body to sit up. I am too weak and don’t have the strength to even get myself to the edge of the bed. I wake up my fiance, who was probably half awake anyways, so he can help me get out of the bed just to use the bathroom. I am frustrated and scared.

Three months go by.

It is eight o’clock in the morning and I am staring down a very large machine called a cross trainer. Seems like the biggest bang for my buck as it will give me a good cardiovascular work out with minimal impact on the already painful parts of my body. I expect to last three minutes on it. I start and my legs and arms just keep going and going. I am on it for twenty-five minutes. I am exhilarated.

I have won.

I found out three months ago that in addition to having Sjogren’s syndrome, I was afflicted with a neurological disorder called Guillain-Barre, which was causing severe body weakness, difficulty walking, and severe pain to the point that I wished I was dead. Even the simplest of tasks was difficult. Guillain-Barre arrives like a freight train, does its damage, and leaves. I was extremely lucky that I had a milder version of it and was started on steroids relatively quickly which may have lessened the blow of the illness. I was never completely paralyzed and did not end up on a ventilator like some people do. I still count my blessings every day about that.

I have been working my tail off ever since January to get better. I already had several strikes against me due to the Sjogren’s syndrome and the Guillain-Barre, along with some blood clots in my lungs; all of which presented more obstacles in my recovery than I knew what to do with. Physical therapy was, and sometimes still is, brutal and exhausting. In addition to all the previously mentioned diagnoses, I was also diagnosed with occipital neuralgia in February. This has resulted in severe head pain and headaches. Yet another obstacle. Or an excuse, depending on how you want to look at it.

But even on my worse days, I stuck with the physical therapy and as the weeks progressed, I started to notice a significant improvement in my strength. I no longer fell over when I crouched down to get a pot or pan out of the lower kitchen cabinet. I could lift a plant above my head again. Taking a shower was a routine task again although I must admit, I don’t take my ability to do that for granted anymore. Come to think of it, I don’t take my ability to do anything physical for granted anymore.

My most recent goal in physical therapy, besides getting the occipital neuralgia under control, was to get back into the gym. I was exercising in one way or another before this whole fiasco began in January which to be honest, is no small feat because of the Sjogren’s syndrome. I am frequently plagued by joint pain, muscle pain, neurological pain, breathing difficulties, and the list goes on and on. Some days I would go to the gym and some days I would take a walk with my dog. I was usually not exercising to the point of winning any marathons, but I have found that pushing myself to get physical activity whenever possible has been helpful with my Sjogren’s symptoms; provided that I do it within reason. Not to mention all the other excellent health benefits.

I had been going to a Planet Fitness in town and had decided that instead of renewing my membership there, I was going to try a different gym that had a pool. My reason for this was that my Sjogren’s issues were occurring more frequently and if I had access to a pool, I may be able to get exercise in the pool on days that I would typically be too sick to exercise. It would be less impact on my joints. Problem was, I was hit with the Guillain-Barre before I had the chance to join this new gym. I was recently cleared by my physical therapist to get back to the gym. Unfortunately I had a fall three weeks ago and still have an open wound which will keep me out of the pool right now, but there were so many other things I could do at the gym besides swim.

If I could just get the courage to go.

Here’s the thing: I was scared. I felt comfortable at my old gym. It was simple and familiar. There has been so much upheaval in my life over the past few months with my health and I find that I am not quite as open to change and new surroundings as I was once. I feel more vulnerable. I feel the need to protect myself. I have always been self conscious about how I look and gyms have always been intimidating to me; especially one like this that is not simply laid out and where I do not know anyone. All of a sudden I felt very insecure about this new place with its different machines, new classes, and unfamiliar rules. It was my insecurity at its finest you could say.

Today was the day to just do it. I was hesitant at first because I was having more joint and muscle pain than in past weeks and my head was acting up after the physical therapist worked on it extensively yesterday. But I had previously chosen today to start going because except for some blood work, I had no doctor appointments or other pressing commitments that I could not get out of if I had to. So if I was down for the count afterwards, so be it!

No excuses.

And guess what?

I loved it.

When I got to the gym this morning, I asked about signing up for their free two session orientation and the staff person that was working the desk, Tom, talked to me about what I specifically wanted help with. This of course led to a conversation about my physical therapy, why I was doing it, my diagnosis etc. He immediately put me at ease and gave me a lot of various ideas about different work outs, especially in regards to classes and the pool. All of a sudden, I didn’t feel so overwhelmed. I felt like this was doable. I felt more secure.

I decided that today I was going to do my physical therapy exercises at the gym instead of at home and get an aerobic workout as well. I spotted the cross trainer, which is similar to an elliptical but looked more difficult as there was an incline. I liked the fact that it overlooked the pool area where I could observe a water aerobics class while I was working out. Besides some walking with my dog over the past week, I have not had any aerobic activity since maybe around Christmas and I anticipated that I would be starting from square one again. I jokingly told Tom that if I lasted three minutes without keeling over, that would be sufficient and I would move on to a bike or a treadmill, both of which had a lesser chance of making me pass out. We figured out, based on my age and recent physical issues, that my maximum heart rate should be around 140.

I don’t know what the deal was, but I was on that thing for twenty-five minutes. Granted the machine was at the easiest incline and resistance, but who cares?? Maybe it was all those physical therapy sessions or hours and hours of doing exercises in my living room. Maybe three months on a new eating plan has helped. Who knows. I was surprised at how much endurance I had and how well I did cardiovascular wise. Not that it was easy, but I got through the twenty-five minutes unscathed. After so many long months of being in bed or on the couch, it felt so good to be sweating and to be able feel my heart pumping so fast again.

It felt good to be out of the house.

To be having fun.

To be able to out one foot in front of the another.

To trust my body not to fall apart.

I know that this morning’s work out will probably wipe me out this evening and maybe even the next several days to come. There will be Motrin involved, maybe some stronger pain medication if I am desperate. Hot packs will once again be my new best friend. I also know that due to the Sjogren’s syndrome, exercising of any type will always be a constant battle for me; probably one that I will have to deal with every single day of my life. But for today, I feel like I can say that I have conquered yet one more obstacle on my path to wellness and healing.

And you know what?

It feels pretty amazing.

Photos Courtesy of Google Images

The Road Less Traveled

“The truth is that our finest moments are most likely to occur when we are feeling deeply uncomfortable, unhappy, or unfulfilled. For it is only in such moments, propelled by our discomfort, that we are likely to step out of our ruts and start searching for different ways or truer answers.” ~ M. Scott Peck

I have had a lot of questions about how my new found eating plan has been going so I figured I would blog about it rather than updating my Facebook status several times more a day than I already do. I know, I am working on that. What can I say? It’s winter, I have been housebound way more than usual, and even the dog gets sick of listening to me after a while!

So I have been going strong since the day after Christmas with eating healthier and getting back on my green smoothies. I wrote about my intention to further expand this in my previous blog entries: Patient, Heal Thyself and Nutritional Healing.  Last week I started the whole gluten-free, dairy-free, semi vegetarian, no soda, minimally processed foods, reduced sugar business. And yes, I am pretty much making it up as I go along since this is not a specific “diet” plan so to speak. Rather, it is a hodgepodge of what I currently think to be in my best interest health wise.

I will be frank. It has been difficult, very difficult. But not more difficult than my Sjogren’s Syndrome related health issues over the past few months and especially over the past two weeks. I am glad that I started to detox from all the Christmas indulgences the day after the holiday. It gave my body a chance to adjust to being off caffeine (which I was off of until the holidays) and processed sugar. I truly believe that there are certain foods that I am addicted to and the big ones are sugar and fast food. I also have found it amazing that once I have gone through that detoxification process, I crave the bad stuff so much less. Past experience has taught me that once I have more than a treat or two in a week, all bets are off because my body seems to then want it more and more.

One of the biggest challenges has been that I am doing this all at a time when I am taking a dose of steroids (prednisone) that I have never had to take at this dose (50mg a day) for this long a duration. Prednisone is notorious for causing excessive hunger, weight gain, cravings and menstrual difficulties which can in turn produce hormonal changes that affect all of the previously stated issues!  But I am resolved to not let that be a barrier for me. In addition, if my nutrition changes help my autoimmune disorder, then hopefully the prednisone will someday soon be a thing of the past. I know I need to give the nutritional plan at least three or four months before I can make a decision about whether it is working for me or not.

Another huge challenge for me has been figuring out the whole gluten-free/dairy-free situation. It is not that difficult to figure out one or the other but the two combined gives me a run for my money. Gluten and the hidden protein of dairy, called casein, are in an unbelievable amount of foods and personal care products.Think about anything processed: condiments, sauces, bread, pasta, beer, drinks, salad dressings, baked goods, cold cuts, marinated meats, hot chocolate; foods in restaurants; I could go on and on! I am not sure how diligent I need to be with the gluten in the personal care products such as  lotion, makeup, shampoo, etc. but I am going to err on the side of caution. My thinking is that if I am putting myself through all this, get it right the first time. As luck would have it, a lot of the personal care products I use because of my Sjogren’s are gluten-free anyways…thank god!

I have found many ways to make this whole process easier. The internet has been an invaluable tool as has my social network of friends and acquaintances who have trail blazed before me. I love the fact that I can type in “is Heinz ketchup gluten-free?” and get an immediate response; most of the time! Certain stores like Trader Joe’s, which I have always loved anyways, do a huge part with training their employees in helping you out. I found out today that they even have a bulletin board with different allergy food lists so that you can take the list around the store in order to make life easier.

I have also learned two valuable things; I must cook at home most of the time in order to accomplish this great nutritional feat and I must speak up for myself without worrying what other people are going to think. At home I have complete control over what is in my kitchen and more importantly, what goes in my mouth. When out in public, especially at restaurants, I have to ask as many questions as I need to and be proactive about bringing my own food as needed. I have been blessed with a very supportive fiancee whom although I do not expect to do this exact plan with me, is more than willing to eat whatever I make. I have successfully divided up our cabinet in sections for foods that are allowable for me and then not allowable in order to make the process easier for both of us. As a matter of fact, as I am writing this, he is giving me a break from cooking and whipping up a pot of gluten-free, dairy-free, vegetarian chili for tomorrow and the next couple of days.

I so love this man.

I know restaurants and socializing will end up being my biggest struggle with this whole way of life but I think it will get easier with time. I don’t want to avoid social situations just because I don’t think I can participate. I had my first restaurant meal at Pizzeria Unos the other day with my mom after a very long day. We were both famished after my doctor’s appointment and I had left my car in their parking lot so she could drive the rest of the way to Hartford. I had done a little online restaurant research and thought I might be able to get a decent, safe meal there. I was not disappointed. They had a separate gluten-free menu and the waitress was good at helping me figure out how to avoid the dairy. It was quite an enjoyable meal with my mom!

As I go through the next month or two of meeting with doctors and undergoing medical tests to try and sort some new things out in regards to the Sjogren’s Syndrome, I know that I am doing everything in my power to hopefully help heal myself. I am taking one day at a time, one hour at a time even. I am discovering a host of new foods that not only did I not know existed, but that I actually enjoy. It is  exciting doing such a positive change for myself.

It makes me feel empowered.

It gives me some peace.









































Photo Courtesy of Google Images

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