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

 

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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.

 

 

Poetry ~ Rediscovery

Opening the door to a brand new me

Not that all has changed, but enough

Tossed and turned by truth, lies, and betrayal

In the wake, the question looms

Who am I now?

This place is exciting, freeing, and scary all at once

For there are parts of me which don’t seem to live here anymore

Not sure that this is a bad thing

Waiting for the dust to settle so that I can see clearly

I feel the need for some of the additions to my essentia

Yet, they worry me at the same time

New levels of distrust and caution have entered

These dangerous words have a dual edge which can free or cut

While needing to embrace more caution, for my own wellbeing

There’s resentment for the way in which I’ve been forced to let it in

Not sure if I truly want to absorb those feelings

For while they protect, they can steal precious life and joy

Yes, people, including myself are fucked up to infinity

Some though, storm the castle walls, tearing them to shreds

While wearing the guise of an ally

Intentional or not is irrelevant, for the destruction is all the same

They rip away sense of security, and the walls which were trained with blooms

The beautiful parts which when removed, strip away the verve

Things which make up the self

For a while, I’ll be sorting through the rubble

Tossing out the rubbish, repairing cracks in things I need to keep

And finding pieces to emerge stronger, both old and new

It’ll all be better than ever

Perhaps, someday I’ll be grateful for the lessons

For the beautiful phoenix who is rising from the ashes

Will be stronger, better, more joyful

For now though, I’m walking a fine line

Between the world of forgiveness

And hanging on to the reminders of what brought me here

So that the sword which felled the blow

Never has the chance to inflict another wound

Just going to let that one sit on the back burner

While I focus on rediscovering myself.

Sharing What I’m Grateful For

Each day, I write down a minimum of five things which I’m thankful for. I have come here and shared some of these in the past, and I thought it would be fun to to it again. My lists run from the everyday to the major milestones. It has become a vital part of my daily routine to jot a few things down. Typically, I write these in the morning because I like to start my day out in a positive frame of mind, but there are times that I just do not make it to my journal until night has fallen. Sometimes the night lists add a different perspective, so changing it up can be nice.

The reason that I am sharing this with all of you is that while many of you probably already do something like this, perhaps some of you do not and might find it as valuable as I have in the years which I’ve been doing it…and maybe some of you used to do something like this and have let the practice lapse. Hey, no judgement here. I am the queen of fading in and out of practice…with many things. Please feel free to share some of the things which you are grateful for in the comments. I’d love to hear about some of the things in your lives which make your heart happy.

*Thankful for a good follow up with the specialist I’ve been seeing about a pre-cancerous condition-he’s giving me a break from the hormone therapy for a few months (maybe longer).

*  Thankful that I’m noticing a positive difference in my health, sleep patterns, and energy levels since adopting a vegan diet and daily exercise.

*  Thankful for the wonderful love and support which I receive from my friends and family.

*  Thankful that another piece of my writing was published.

*  Thankful for increasing clarity about my needs and wishes, as well as more clarity about the relationships in my life.

*  Thankful for a terrific group of friends, both old and new.

*  Thankful for all of the doors which have opened, making the way for me to follow my dreams.

*  Thankful to finally have a good enough relationship with myself that I truly know who I am and feel good about what I see.

*  Thankful for the miraculous things I’ve seen happening in the lives of others.

*  Thankful for the opportunity to make a positive impact with my work and in everyday life.

*  Thankful for devoting time each day for self care/soul care, no matter how small. It makes such a difference.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Bonus Post ~ Letter To My Younger Self

Yesterday, Miriam’s Well published a letter to my you younger self that I had sent in response to a call for submissions. Many of us have wished that our present day selves could go and have a chat with our younger selves about life. Sitting down to write this letter was a very healing experience. I highly recommend that some of you give it a try sometime.

To read the letter, please click here. Sure I could post it here, but I’d really like Miriam’s Well to get the traffic for being so kind as to publish my letter. Feel free to come back here to comment. ❤

Release Valves

As I’m sitting here watching fluffy white clouds drift slowly across the sky, I’m reflecting on what a good week last week was. Even though I had a summer cold which is still lingering a little, it was one of the best weeks I’ve had in a while. The past few months have been so busy that there was very little down time. For most of last week though, I just drifted between the couch and bed, with my phones turned off since my throat wasn’t up for much talking anyway.

It felt so good to disconnect from everything and spend time reading, meditating, sleeping, and crossing everything off my to do list, and not because I did any of them. Upon looking back at my calendar over the past few months, I realized just how little time for relaxation and recharging I had done. Friday found me feeling better than I had all week, and my sister came over for a cup of tea and a nice chat.Then, to my pleasant surprise, a new friend called and invited me out to play. It was definitely hot and muggy here in Asheville, but it was so good to get outside for a while and simply meander for a few hours, enjoying the ever present opportunities for people watching that my hometown presents along with the good company that I was in.

On Friday night, I had the opportunity to enjoy a nice long, deep conversation with another friend over the phone. On Saturday, my already way more than normally socialized self got a call from a good friend who I hadn’t seen in months. She was going to be in the neighborhood and called to see if I was up for a visit…to share some tea and to get caught up. Though admittedly very close to wiped out, I readily agreed as I had planned on calling her later in the afternoon on Saturday anyway because I hadn’t spoken with her in about a month. Between her schedule and mine, we just hadn’t had an opportunity to catch up with one another. Getting to see her was a very nice added bonus. My intellect was stimulated in such a good way over the weekend, and my normally fine on her own self thoroughly enjoyed it. Being overly social is not something which I’ve ever aspired to be. The nature of my work as a writer and artist require a good bit of solitude. Luckily for me, most of the time, I like that.

Now, it isn’t that I could ever be one of those people who buy a plot of land in the woods and live as a true hermit. I start to get a little weird(er), if I go more than a few days without any human contact at all, which typically happens on the phone or through Skype, and more than a week without getting out of the house. I’m also very fortunate in that my sister lives so close that we get to hang out a few evenings a week. Good company is something which I definitely enjoy, and this weekend I had a grand abundance of it. This week, I will be getting back into the swing of things as far as work goes…at some point.

The big difference is that I’m going to make sure to start taking time out for relaxation and fun. I’m looking forward to some cooler weather in the upcoming months, as I’m longing to get outside and enjoy some fresh air much more often. This week has taught me how good for my soul it is to commune over a cup or coffee or tea and wander aimlessly just for the sake of it. It has also taught me how good it is to put down the to do list and make time for meditating and giving myself a reiki treatment. Finding balance between work and play can be tough for all of us, even for those of us for whom work is a lot like play.

What are your favorite release valves?

5 Ways To Navigate As A Sensitive

When writing about this topic, I rewrote the title and first few lines many times in order to convey exactly what is on my mind. There are many of us who are very sensitive, and this makes navigating the waters of our society a little tricky at times. Below I will be making a list of what life is like for sensitives and how they can make it through life a little more comfortably. Maybe this post will even help those who have relationships with sensitives understand us better.

  1. Sensitives pick up on cues and feelings fairly easily. Once they know that something makes another person feel bad or stressed, they will do their best to avoid doing or saying what it is that causes the other person discomfort. This is one of the reasons why people like talking with us so much. It is okay to let go of guilt when you need to withdraw from some people who continue to engage in certain things despite repeated attempts at asking them to stop. In addition, it is okay to take a stand and/or to withdraw when someone tries to make you feel bad for asking for what you need or for voicing your feelings. It doesn’t make you less loving when you practice self-care and preservation.
  2. Sensitives care about those they love very deeply. They literally feel the pain of those that matter to them, making them feel terrible when there is nothing that they can do to help. When their friend suffers heartbreak, the sensitive feels it right along with them. When someone they care about is going through a rough spot, the sensitive feels the stress right along with them. Often, a sensitive person will not ask for help because they do not wish to cause stress for the people they care about. When a sensitive is asked for help by someone who they care about, it is painful for them to have to deny the request. Often, a sensitive will try to explain how much they hate it that they cannot help and ask for understanding. When this understanding isn’t given, the sensitive becomes stressed to the max and experiences pain that the person doesn’t seem to be respectful of them. This can sometimes lead to the sensitive needing to withdraw, because the amount of stress and heartache takes a physical toll.
  3. Sensitives can come across as indecisive due to the amount of time it takes to make a decision. When someone with a lesser degree of sensitivity is asked what they would like to do, they are often much quicker at answering. It isn’t that a sensitive is trying to be difficult by taking longer. It is that they are picking up on subtle cues and attempting to figure out which option would make everyone involved the happiest. When a less sensitive person gets annoyed with them for how long it is taking, the sensitive will often shut down because they feel badly that their attempt to make sure everyone was happy made someone upset. Sensitives will need to toy around with ways which will lessen the amount of time it takes to decide while still letting them feel good about their choices. In addition, they should understand that there is nothing wrong with the way that they are, and that they shouldn’t be subjected to mean-spirited ridicule or unkindness.
  4. Sensitives tend to be intuitive and compassionate. This often leads to others desiring to speak with their sensitive friends about their problems. At the same time, the sensitive can get burned out because of the depth and intensity of their feelings. Not only that, but people get so accustomed to speaking with the sensitive about their difficulties that relationships can slide into unhealthy patterns. There are people out there who will take advantage of the sensitive because they feel the need to have attention. This leads to the sensitive always being the listener or rescuer. Over time, the sensitive feels drained and realizes that things are imbalanced. They will often try to even out the scales and salvage the relationship. Sometimes this is successful, which is the desirable outcome. Oftentimes, it isn’t possible to balance things out. In these cases, the sensitive needs to understand that they aren’t doing anything wrong by pulling away. It is possible to still love and care for someone deeply, even when that person cannot be part of your life on a regular basis, or perhaps not at all.
  5. Sensitives need more time and space than many others do. Due to the intensity of their feelings and the impact of interacting with others (even when it’s good), the sensitive needs time to recharge their batteries a bit before joining the world again. For those less sensitive, this can feel like the sensitive is ignoring them or doesn’t care. The sensitive should to try to explain this at least once or twice. Many people, while they won’t be able to relate, will understand that you genuinely care about them. Some will not understand or care to try, which may lead to an end of the relationship. Sensitives should remember that they didn’t do anything wrong by simply being themselves, and that while they may spend less time with friends than many do, that their levels of compassion and caring make them desirable and worthy of friendship.