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

 

Channeling My Inner Ludo ~ Calling The Rocks

Metaphor warning! This post is going to be filled with some heavy metaphors, because sometimes, that’s just the way that my mind works. This morning, I was sitting at my table pondering several things, and for some reason, the image of Ludo from “Labyrinth” popped to mind. When the going got tough, good old Ludo cocked his head back and let out series of deep, throaty howls to summon the rocks. In several scenes of the movie, just when things seem to be at their very bleakest, he howls from deep inside, and rocks of all sizes come rolling to the rescue.

As I sat thinking about Ludo, it inspired me to be a bit more like him, and summon my own rocks. There has been a lot to wade through lately, and I’ll admit that at times I’ve felt like I’m barely keeping my head above water. Then, this morning I started to wonder where my inner fire had gone and it occurred to me that I have everything that I need to reignite it. Instead of being mired down by things which are completely out of my control, I’m tipping my head back and howling.

One of my favorite scenes of the movie has always been the one in which the group of travelers find themselves in the Bog of Eternal Stench, and Sarah is hanging by a vine over the middle of the bog, with no way out. This is when Ludo howls for the rocks to come, and Sir Didymous (the fox looking knight) really gives him the business about howling when someone needed rescued, as he, himself, is just standing there panicking. Then, the rocks start rolling in, making a walkway through the bog, so that Sarah and the rest of the gang can wend their way across.

Step by step, they make their way through that perilous part of their journey. How fitting is it that when they found themselves in the Bog of Eternal Stench that the way out was to summon these steady rocks and make their way through it, one step at a time? I’m thinking about my own steps across this part of my own journey, and have been coming up with individual names for my “rocks”. I’ll be sure to pave alternate pathways so that there are choices in direction. Too much pigeon-holing is not a good thing. The road to happy-town needs to have a few exits! 🙂

Here are the names of my stepping stones:

  • Resolve- to keep going
  • Courage- to stay aware of the fact that I can do what is right for me
  • Self reliance- to keep the knowledge that I can trust myself alive
  • Patience- tempered with a hefty dose of strength
  • Joy- for what is
  • Hope- for what is to come
  • Love- for the opportunity to make the most of the life that I have, and to make a difference
  • Compassion- for others, and for myself

I’ll be working on summoning my inner rocks to pave a path which feels more stable. More than anything right now, I’m craving a feeling of contentment and stability, an overall sense of my place in the world. For some reason, I’ve been having a tough time regaining that sense for myself, and I miss it more than anything. So…let the howling begin! What would you name the rocks for your own pathway?

Chronic Illness ~ The Elephant In The Room

It is a rare occasion these days that I write a post about anything personal. To be fair, it is a rare occasion that I post anything at all this year. With that being said, I felt compelled to come here today and write about my elephant in the room, which is chronic illness. In thinking back, I’m pretty sure that it has been at least a few years since I’ve shared anything about this, at least publicly. Why now?

In the past year, flare-ups of my conditions have been a fairly regular occurrence, more so than they have been for quite some time. I do know a big part of the reason this has been happening, but that’s not the point of why I’m writing today. This is all about the things that we who have chronic illnesses would like for others to know, and don’t often express. So without further adieu, here are some of the things that I wish for people to know.

  • We do not want pity, but compassion is welcome.
  • We want you know know that when we spend time with you, that we are making a conscious choice to expend precious energy to do so. This often means that we will have to spend a day or two resting, but it’s worth it to us. So, when times arise in which we can’t make it (and they will happen), it isn’t that we don’t want to. Our minds and hearts want to do the things you invite us to do more than anything.
  • We do welcome suggestions sometimes, just not when we’re in the middle of a flare. Giving most of you the benefit of the doubt, your intentions are probably good. If your desire truly is to help, wait until we are feeling better to make your observations and suggestions. To do so when we are sick can feel like an accusation
  • When we tell you we can’t do something, it means we can’t. Sometimes it’s clear that some of our friends and family hear “I don’t want to”, and that is not what we’re saying. We are not making excuses to get out of things. (See bullet point #2)
  • We understand that it can be challenging to be our friend, family member, or partner at times. We lose our patience with our lack of reliability too. Even though we may have to sit things out, please don’t stop asking us. Even though it is disappointing when we have to say no, try to remember how much fun we have when we can say yes. We sure do! Sometimes thinking of the good times is what gets us through.
  • From the outside it might feel to some that we are selfish, or even lazy. We are neither of those things. We often use up all (or much) of our energy doing the things that we manage to do. Even though we may look fine and don’t really say anything, we are often more tired or in pain than you know when we’re doing things. A misconception which might happen with this one is that by letting you know about this particular point, we’re trying to lay a guilt trip. Nope! We are doing all of the things that we do with you joyfully and cherish every moment, despite those things. We just don’t want you to assume that it means that we feel fine and will be able to do the same later or tomorrow.
  • We want you to know how much we appreciate the people in our lives. The little things that you do, often without even thinking of it, mean so much. When you drop by with something to eat or call on the phone just to say hello, that can be the highlight of the entire day. There are times when we may not have the energy to talk on the phone, but just knowing that you called means a lot. When we do not pick up the phone, and may not return your call for a day or two, it isn’t that we’re snubbing you, so please never think so. Unless of course, we never return your call.  >:)
  • Most importantly, please remember that even when things get rough for a little while, that we’re still the same person that you loved yesterday.

I’m sure that there are many things that I didn’t touch on, but for today, these are the ones which felt most important to mention. It is my hope that this reaches the screen of someone who needs to read it. While most of us would not assume that we are owed any of the things mentioned above, I think it’s fair to say that they sure are nice.

Sunday Morning Reflections

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I’ve been sitting here in the stillness writing poetry this morning, with my trusty cup of coffee by my side and it has reminded me of just how good life can be. The quiet peace of a Sunday morning is something which I haven’t been still enough to enjoy for a while, and it feels pretty great to just sit and take it in. Earlier, I went outside to enjoy the early Fall coolness and take a few photos of the heavy fog which wrapped the city. There is just something about the hush of a misty early morning that’s so relaxing, and at least for me, creatively inspiring.

This time of year seems to be when I really thrive as a creator. My imagination kicks into high gear and I find myself slipping into quiet solitude as often as possible. It’s when both words and paint seem to flow at their best, and I find myself reaching for a good book or knitting needles. It’s a good time to plan and daydream.

There’s no real reason for this post. I have just enjoyed my morning so much that I’m filled with gratitude for the simple pleasures I’ve had. It felt like something that I wanted to share, because it has been a while since this particular feeling of calm contentment has washed over me. As I’m prone to do, I thought I’d come here and open up a bit about things and ask all of you what types of things help you to get in the zone. As always, I’m not asking you to share it here, unless you feel called to. I always enjoy opening up a dialogue about what makes people’s hearts sing.

Still Around

While I have nothing creative to share with you today, I wanted to let all of you know that I’m still here. Right now things are still in a state of suspended animation and may very well remain that way for a few more weeks. Over the last two days, I’ve at least been able to be still and sit in my own space without feeling like I’m crawling out of my skin. Part of this is because I know that I need to allow myself to be with my thoughts, another part is that I truly feel the desire for solitude right now, and the final part is that my autoimmune and neurological issues have reared their heads in a pretty big way and I know that I have to slow down.

Due to time constraints, not to mention the fact that my mind will only let me be inactive for so long, I’ll be making a creative comeback within the next week. I have a jam packed, wonderful October planned. For those of you out there who know me and worry…please don’t. I’m fine and I will be fine. I’m making plans for next week to keep me out of a rut. What I’ve learned over the years and in the past few weeks in an accelerated fashion is how important it is to strike a balance which honors who we are and what our needs are, and right here and now, my need is to be still and frankly…alone. I truly appreciate all of the love, support, and listening ears over the past few weeks. There is a need now however to turn inward for my answers for a few days. Not only that, but I need to trust those answers, and not second guess myself about them. There is one answer which I am already sure that I trust (yes J…you), but a few others which I need to reflect on.

One of the things I’ll be doing for the remainder of this week is devoting some quiet time to asking myself what all of that means for me right now.  So, while awaiting the other half of one particular puzzle to figure out where, if anywhere, they will choose to fit…I am stripping things down to the core of just me…where do I want to be…what do I want to be doing. These answers will be the same no matter what the outcome of the other situation is. Anything further than the very basics of my own personal stuff has to be put on hold for now, and that just has to be okay, no matter how trying and exhausting it may be. Be back soon with some creations to share!

I also wish to say a few words about the recent natural disaster taking place in the southern United States. My heart goes out to everyone impacted by the storm. I can’t even imagine what they are going through because I’ve never been through anything near that magnitude when it comes to the weather. It’s going to be a long road ahead for so many people as they rebuild and recover. Times like these make many of us more mindful of the lives of our fellow humans beings. Love and kindness go a long way… as do compassion and action (no matter how big or small we are capable of), each and every day…not just when tragedy strikes.

Be gentle and kind to yourselves too, please. ❤

Eclipse, Today And Beyond

As just about anyone who doesn’t live under a rock knows, today was the eclipse. Many of you who come here regularly have likely noticed that this has been one wild ride of a few weeks in my personal life. Things are still in a state of limbo, which happens to be one of my least favorite states of being that is. However, I was fortunate enough to be in the 99% path of totality for the solar eclipse.

While things were a lot different than they were supposed to be today, it wound up being a really nice day. My sister and I went out and headed down to the park to witness the eclipse which was visible from here in downtown Asheville, NC. It was spectacular and it was lovely to be able to experience it with her. After the eclipse itself was over, we roamed around and talked about a lot of things. More like, I talked and she mainly listened. This seems to be the usual state of things between the two of us…and I’m hoping to hear more about her aspirations and dreams this evening.

The actual eclipse is over, yet my own emotional state is eclipsed by whatever may be coming my way this week. Yes, I’m super nervous because all of the uncertainty…and knowing what I’d like the outcome to be. At the same time, I am fully aware that there is absolutely nothing that I can do about anything in this situation other than do my best to control what my own reaction will be. I’ve been attempting to make contingency plans and keeping myself in a state of beyond distraction while I await an undetermined day this week to sit down and have a conversation which is both anticipated and dreaded at the same time.

Instead of beating around the bush, I’ll just come out and say it…I fooled around and fell in love this year. Things have been unsure for a few months now, and the last few weeks have been nothing short of hellish. Yet, I’m forcing myself to allow a bit of hope until we sit down and talk later this week. This may or may not be a mistake, but until I know for sure I refuse to fully raise the white flag and wave it.

Until I am able to sit down and have this conversation this week, I am going to be taking a short break from things here on the blog. Last week, I poured myself into writing poetry and painting…because I may have gone completely bonkers otherwise. For now though, I need to stop and be with all that it going on. Unless something happens to postpone this chat, at least I’ll know one way or another…for sure…where I stand.

Coming here and sharing like this…in a way that isn’t fictionalized…isn’t the way I typically do things. Right now though, I find myself out of creative juice. Knowing that in just a few more days I’ll have more clarity has left me feeling a little like a deer in the headlights. It has to be okay now, and it has to be okay later. But for now, I just need to step back from writing and art.

In addition to hanging in the balance when it comes to my love life, I am in a state of major shifting otherwise too. I feel as though I’d be doing myself a disservice by continuing to run myself into the ground in an attempt to avoid even the tiniest bit of pain. It’s time to face the music and figure out which path I want to take next, with or without him.  The paths will be a bit different depending on how things go…but I still feel like I’m in need of making something of a road map to go by because I am at one of those pivotal points….one in which there has to be a major restructuring. It feels scary but long overdue.  I’ll be back soon…maybe in a few days…maybe in a week or so…but I will be back. I truly appreciate all of you!

Love,

Tracy

 

 

 

The Page Is Where A Poet…

Hello everyone,

Over the past several days, I’ve been posting some very emotional poetry. Even though I do not feel that it is necessary to come here and explain a few things, I will…just because…just to make things clear.

Poets not only smile, dance, and explore the world on the page. We also cry, bleed, heal, and process on the page. So, when you see poetry of the nature I’ve been posting lately it isn’t that I am looking for pity, or feeling like the world has ended. It simply means that I am hurting, and that poetry is a good way for me to allow the pain to wash through me.  Notice that I am only speaking for myself here. There may be others who use poems like these to try to garner attention or as cries for help. Mine are simply me, expressing what is in my heart and sharing all of that with whoever may read it, for a few reasons.

First and foremost…umm…I’m a poet and I love to write and read all sorts of poetry. Secondly, I’ve always believed that words are powerful tools for healing and understanding. Not to mention that painting pictures with words is a fantastic alternative way to share our vision of the world and ourselves.

I truly appreciate and welcome all of the support which I’ve received from those of you who have reached out. Please do not take this post as me asking any of you to back off or leave me alone. I just want anyone who may be wondering to know that I am way more resilient than to allow a broken heart to make me wave the white flag on life.  I will get through this, and I want to thank the dear people who have been so lovely and supportive. It just takes time. While I cannot promise that there won’t be any more of this heart wrenching material appearing here in the coming days or weeks, just know that I will be fine, and if I’m not…those of you who love and care about me will be the first to know.

I’ve enjoyed sharing a little bit more about what beats in the heart of this poet. Hope that for those of you who do not wax poetic yourselves, that this post has given you some insight as to how deeply poetry pervades the lives of those of us who imbibe.

Lots of love,

Tracy