Rare Personal Update

Hello everyone,

Way back in my early years of blogging, I wrote a little bit about my life with chronic illness. As a brief catch up, for anyone who wasn’t here then and those who have perhaps forgotten, I’ll say a little about the past and move on. I’ve been dealing with chronic pain, fatigue, and a whole other wide array of symptoms for decades. I almost died of pneumonia at 2 and as a result my immune system was damaged, was diagnosed with osteoarthritis, mono and mild scoliosis at around age 13, chronic fatigue syndrome in my early twenties, fibromyalgia in my late twenties, and degenerative disc disease in my thirties. For the past six years, my family doctor has suspected an autoimmune disease but blood work never showed any markers.

Finally about three months ago, I was referred to a rheumatologist, at my request, because I was in the worst flare that I’ve had in at least ten years. This flare was relentless, lasting for almost two months with no sign of letting up. I’d been under great stress, which I’m sure is the catalyst for the flare. Earlier this month, I went back to the rheumatologist for a follow up. I was diagnosed with connective tissue disease, with some features of lupus and concern for developing psoriatic arthritis. The hope is that the doctor can get this contained before it goes full beast mode, as well as to prevent any further damage to my joints and connective tissue.

With high hopes, three weeks ago, I began taking Plaquenil, which is supposed to be the mildest therapy with the least side effects (except for the rare potential for blindness, nothing to be concerned about there). As the past three weeks wore on, I’ve only gotten sicker. More fatigued, more pain, nausea from hell, but I was willing to go through that thinking that it would swing in the other direction eventually. This was until a few days ago, when out of the blue, my knees felt like they were on fire and turned as red as a well cooked lobster. Over the course of a few hours, the redness dissipated but the joint pain was excruciating. Then, other joints in my body began hurting too and other symptoms set in as well. So, I called his office and was told to stop taking it immediately and to drink as much water as I can stand to help get the medication flushed out of my body. Who knows how long this will take, but I’m hoping not too long because frankly, this sucks. A new treatment plan will be coming up at some point in the near future. This makes me a bit nervous as that was the mildest treatment, but then again, something more intense might not be as bad as the reaction I’ve had to Plaquenil. Time will tell.

All I know is that right now, I’m in about month three of increasingly severe illness and feeling more than a little disappointed that the treatment has only made things worse so far. In my typical fashion however, I will not give up, nor will I let this keep me from getting back to the things that I love as soon as I am able to. The pain, fatigue, and brain fog have kept me from engaging in all of my usual creative activities but I’m sure that this won’t last forever. Just wanted to come here and let all of you know why I haven’t been around…and that I will be back…hopefully soon.

I’m grateful for a few people in my life, who have helped me to feel less isolated and have been so compassionate and understanding with my current decreased capacity. This experience is helping me to further clarify what I desire in my life, especially when it comes to my relationships with others. My circle is narrowing, as I move toward creating relationships which are healthy, reciprocal, positive, and fulfilling. Being this ill has taught me the wisdom of loving others, but loving myself more. Gone are the days of one sided relationships, and consistent energy sucking conversations. Most importantly, I’ve made the conscious decision to no longer be a receptacle for the negativity of others. Over the years, these types of relationships have taken their toll both mentally and physically and it has to stop, effective immediately. My health comes first, and that means conserving my energy for healthy relationships and activities which bring joy to my life, and hopefully that of others. It’s past time to bring more positivity back into my life.

This has been a really long post. If you’ve made it this far, thank you! I’ll see you again, hopefully very soon, and hopefully with something creative to share.

Much love,

Tracy

 

Thoughts On Being In The Moment

This morning, I came across a quote which resonated with me, and sparked some thoughts that I wish to share. The quote is below.

“There is only the moment. The now. Only what you are experiencing at this second is real.” ~ Leo Buscaglia

The seeming simplicity of this quote is deceptive. So often, I have had the tendency to take something which is happening in the present and allow my mind to let it take on epic proportions. We all do it, and typically it involves the things which are unpleasant or stressful. When something is going awry, do you find your thoughts diving into the past, or projecting the issue into the future, feeling like the situation is going to become a permanent fixture? I certainly have, and have been learning to work on it.

It’s definitely a process, and a very conscious choice. The actual practice of mindfulness is relatively new to me. I’ve often heard people talking about living in the moment, and just thought that it was one of those nice things to say, but hard or impossible to do. I’m finding that it isn’t all that difficult (most of the time, anyway). It takes a lot of inner reminders, but over time it is becomes easier.

For myself, as someone who has dealt with a great deal of trauma over the course of my life, remembering that what is happening right at this moment is what is real has been an amazing tool to help me keep things in balance. No matter whether a thing is positive or negative, reminding ourselves that in the next moment things shift is beyond helpful. Life is constant change, and while sometimes this is hard, the alternative is to live in a state of stagnation. I should say trying to live in a state of stagnation, because no matter how concentrated the effort may be, we cannot stem the tide of change.

The sentiment I’m writing about doesn’t mean that we squash our feelings. It’s just as unhealthy to try to pretend that it doesn’t exist as it is to let our thoughts project too far into the future. Building too many expectations for the future can be at the very least disappointing at times, and at the worst can color our thoughts so much that we lose opportunities for happiness because we’re convinced that things will stay the same. We can set goals for ourselves without becoming overly attached to the precise details. There are often many paths to a goal, and unexpected ways that our dreams manifest themselves.

By remembering that the present is all that is, it becomes so much easier to savor our moments of joy as they happen. Not only that, it becomes easier to acknowledge that we may be sad, angry, heartbroken, or any other emotion that pops up, and be able to let it just be without falling into the rabbit hole of remembering all of the “bad stuff” that happened in the past, or convincing ourselves that life is always going to follow the same patterns.

Trust me, I know that this is not the easiest practice to adopt. As a relative newbie to it myself, I have seen how ingrained it is to step out of what is happening in our present moments to dwell in the past and obsess over the future. This whole year for me is dedicated to a continuation of my mindfulness practice. So far, it has been the most helpful method inner work I’ve tried to date. If you find yourself in a place of reliving traumas or being caught up in the type of thought patterns which I wrote about above, I encourage you to look into all of this a bit, and if you feel you need help with it, please reach out and find it. I openly admit that I have.

 

 

Settling Into Just Being

Okay, so my best friend wrote a post yesterday that so inspired my post today that the very title was something that she said in what she wrote. She and I both have had a pretty difficult time of it in the last year or so. To say that there has been a lot of learning going on would be an understatement. Please do head on over and read her post if you wish. Now, I’ll get on with it.

So, the past year and a half for me was a breaking point. This is something which needed to happen because I’ve literally spent most of my life living old patterns and it became impossible to keep doing so and stay sane, and I mean that almost literally. It truly was a breaking point in my life. These are patterns which were created long, long ago. In childhood in fact. The hell of it has been that they were set so early that the real me has not really had much time to come out and play. The real me had been almost completely buried.

Sure, there have been glimpses of me here and there, but for the most part I’ve slid back into those ways of being and interacting in the world which were drilled into me as a means to stay safe. While that was never okay, it was at one time necessary for survival. After that necessary time had passed though, I was simply reacting to things which evoked those old responses and instead of standing tall in my own being, I would either put another person first to my own detriment, or I would have a fear trigger and simply squash myself into what I thought would keep the waters smooth. Well let me tell you, this never works.

Maybe for a while things felt calmer, but in the long run it wasn’t sustainable. Sometimes when we feel like we’re playing it safe, we are only prolonging the inevitable, and putting ourselves through unnecessary stress and pain. There is a lot of history which I could go into, but I won’t. Not because I’m not okay talking about it, but because this post is about the present and moving forward.

I have forgiven the past. I have forgiven the people who have caused me harm. I have made great progress in forgiving myself for the role which I played in letting some of those situations play out. Granted, my heart was always in the right place, but there have been many times in which it was very misguided. I’m at a place in which I no longer feel the need or desire to think or talk about the past, unless it’s necessary for some reason. I’ve come to terms with what the past was, and have reached the point of breaking the patterns.

This isn’t to say that my work is done. In some respects I’m only getting truly started, but it feels so good. This is where the words settling into just being come into play. I’ve realized that I truly like who I am at my core, and I really like who I am becoming. A large part of doing this work has been simply allowing myself to settle into being. Learning to live in the present, not in the past and not in the future, is strangely liberating.

Sure, I’ve read about being in the present and it sounded good but I had never really tried to put it into practice before. I had some mistaken ideas about what it meant exactly. It doesn’t mean that the past is erased, it is more of a reminding myself that when parts of the past rear their ugly heads that I am not longer in that place, and that those feelings and memories have no power over me. It doesn’t mean that I can’t make plans for the future. It is simply a loosening of the expectations of how things will work and not trying to plan all of the minute details.

The deeper I go into this space, the less I find myself wishing for anything else. This very moment is a pretty good place to be. More and more, I actually remember to stop and ask myself if there’s anything that I can do about any given thing in this moment, and if there isn’t, it becomes easier to release it and just be. If though, there is something that I can do about something, I find myself being able to break it down even further into what I can do about it right now and to be okay with leaving the rest for when it’s appropriate.

While the deep trauma work which I’ve chosen to undertake isn’t for the faint of heart, there’s nothing else I’d rather be doing. To finally be saying goodbye to the triggers, fears, and anxiety is the most awesome feeling. Lots of things have fallen away, and some of those losses have been harder than others. I have to admit though, that every last one of them has needed to happen. I’m looking forward to what is to come, more so than ever. This feels a little bit odd to say because everything, and I do mean EVERYTHING in me has shifted, so my exact direction is not exactly clear. In the past, this would have scared the hell out of me. Now though it feels perfect, because I am starting with a clean slate and I’m not following someone else’s map…I’m drawing my own.