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

 

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.

What Does Your Mental Diet Consist Of?

Many of us are fairly aware of and put some thought into what types of food we put into our bodies, whether we make changes or not. What about the material we feed our minds with though? We are exposed to a great deal of negative material on a daily basis. The thing about it which disturbs me the most is that so many have become desensitized to violence, negativity and hatred. Even further, many have adopted it as a normal part of their own interactions with the world at large.

I stopped watching the news for the most part years ago. I try to take a quick glimpse at headlines now and then to see what might be happening in the world so that I know where to send loving thoughts and energy, but otherwise I avoid the news. For a long time, I was in the habit of watching it daily and after a while, found it too disturbing/depressing. It was impacting the way that I viewed the world and the people in it-and I didn’t like it. Getting rid of the news habit was a good move for me mentally and spiritually. It eliminated a great deal of stress and feelings of fear/distrust when I stopped consuming a regular diet of “what is wrong” in the world. I’m not asking you to agree with this-just sharing something that was better for me personally.

Now, I find myself at another crossroads when it comes to my mental diet. Lately I’ve been increasingly avoiding one particular social media site due to the amount of negativity, violent attitudes, and hate speech that is becoming more and more common. Each time I sign in, I find myself cringing at the amount of hatred that I see being disseminated. It isn’t that I think that it’s wrong to dislike something or the way that a person conducts themselves. What is becoming too hard for me to swallow is the way that our society has seemingly confused voicing an opinion and being outright hateful and sometimes threatening.

The questions that all of this raises in my mind are these:

Have we become so accustomed to this type of speech and behavior that it has become the new norm?

If this is true, what can we do about it?

I realize that I cannot change anyone other than myself. So, the conclusion for me is to eliminate another source of disturbing material from my consumption. It is my belief that what we focus on becomes our reality, and what I’ve been seeing on an ever increasing basis in my feed is not acceptable for me as a reality. So, my quest is to find the best solution in making sure that I will be exposing myself to the material and people who feed the loving and joyous parts of me-that are catalysts for positive change as opposed to dissension.

I’ve been asking myself more and more lately about my intake, actions and thoughts to see what changes need to be made in order to create a more positive and compassionate world. I’ve found several things which I’m working with now, and am looking forward to the shift of my personal reality as I continue making these discoveries and changes.

The reason that I’m writing about this is to help create more awareness around what we are feeding our minds with on a regular basis. Simply ask yourself if the things which you are exposed to on a regular basis make you feel positive or negative. You will gain incredible insight as to whether your mental diet is a healthy one for you. This isn’t about finger pointing or judgement. It isn’t my job or desire to do that. One of the things which means a lot to me, and always has, is the importance of bringing people together. It is our thoughts and mental attitudes which have the greatest power to accomplish this, and that is what this post is about.

 

 

 

 

 

Compassion Toward Self

This post, as many of my posts tend to be, is inspired by my own life. This particular one is based upon things which are going on in my current life as opposed to the past. As those of you who have been following me for a while know, last year and the early part of this year were pretty challenging, emotionally and physically. Things have gotten immensely better emotionally and I’m in a good place there for the most part. The reason I threw that “for the most part” in there is that I am going through some mood swings due to hormonal issues.

Several months ago I was told that a health condition had been caught just in time-before it had a chance to turn cancerous. I’m still so thankful for that. It’s hard for me to find words which would indicate how this news has changed my life in many ways. My levels of patience, inner peace, and ability to see the importance of caring for myself have gone through the roof. Not only that, but it has gotten easier for me to make decisions based upon my own needs and desires without feeling guilty. This has clarified my work and direction. For the first time ever, I actually know what it is that I wish to do, and have been able to narrow things down in a focused and doable way.

As part of the treatment of this medical condition, I just began taking a hormone at the beginning of this month. Let me tell you, the side effects are a little rough. So far I’ve experienced more difficulty sleeping, feeling jittery, some mood swings, cramping, more headaches and other things that I’ll spare you. Every time I begin to think about how yucky I feel at times, I remind myself of how fortunate I am to have the opportunity to have this option before things got out of hand.

Not only that, but when the mood swings set in, another side effect came with them. I gained a greater ability to feel compassionate toward myself. This is a huge blessing. Little by little, I see the unnecessary guilt of the past finally starting to completely melt away. As I go further along on my journey and take the time to be still and listen to my heart, there are doors which had been previously closed in my life opening. One of the most amazing things that I’ve been seeing is that as I learn compassion toward myself, my compassion for others grows.

While my compassion for others may not look the same as it has in the past, it has actually become more complete. It’s amazing that as you start to have compassion toward yourself, it becomes easier when the time comes that you need to release someone or something from your life. Instead of allowing it to get to the point that it happens in anger or resentment, it becomes possible to do so in love or at least neutrally. You also realize that sometimes you are actually doing people more good by stepping back than you would by holding on.

My wish for you is that if you haven’t already, that you too will be able to practice more compassion toward yourself. This seemingly selfish practice is anything but. While it might sound a little out there for some of you, you won’t know until you try it. Ask yourself¬† the following questions. What do you have to lose by giving yourself this gift?¬† What do you possibly have to gain?

Take The Selfish Out of Self Care

If you’re anything like me, you were taught that making self care a priority was a selfish act. At the same time it was likely ingrained in you that you should always bring the best you’ve got in you to the table of life. Let’s take those sentences apart for a moment.

Self care is selfish.

Bring the best you’ve got in you to the table of life.

Notice anything? Those two sentences contradict one another-and not just a little bit. It isn’t possible to bring your best to the table if you’ve been neglecting yourself, and sadly that is what many of us do for not just years, but decades and entire lifetimes. There are a few facets of self care that we’ll focus on for this week’s post.

Self care not only keeps us energized and healthy, it keeps us on track with our purpose. That might seem strange at first glance, but think about it. If you are always on the go and busy, even if you’re doing good things with your time, there’s no time to tend to your own stuff. How are you to know what makes your soul sing if you never take the time to ask it what it wants? It is important to understand that we are of better service to the world and others when we are clear about and within ourselves.

The reason for that is that many of us distract ourselves from the issues that we desperately need to face and clear by staying too busy. Part of self care is the tending of our innermost being. When we do this, we are able to truly know love and compassion because until we experience it for ourselves we cannot completely understand how to help others to find it. Sometimes facing the things that need facing is extremely difficult, but take it from me-they do not go away by trying to ignore them. Not only that, but you find out what it is that you truly wish to be doing with your life, as opposed to what you’ve been told that you should want.

The second facet of self care that is so very important is the joy part. Allowing yourself the opportunity to relax and do things that bring a smile to your face is not a waste of time. It creates a more well rounded foundation from which to fulfill the missions that we set for ourselves. Why? A happy person acts out of a sense of true desire and passion instead of a begrudging feeling of responsibility. Sometimes we need to say no to a request for help from someone in order to take care of one of the facets of our own self care, and that is perfectly okay too. Seriously, do not feel guilty for this.

My own experience has taught me over the course of a few decades that my willingness to always say yes to a request for help wasn’t a positive thing. The first was that I avoided dealing with the issues which were keeping me from growing into my genuine self. The second was that by always saying yes, there were times that I didn’t allow the other person an opportunity to learn how to handle things on their own.

By no means do I advocate a life of complete selfish hedonism. It’s just vital that we all know that self care is not a luxury-it is a necessity, and that we know that not all requests need be granted because at times to do so is a detriment to self and to the other party. Believe it or not, allowing yourself to practice better self care helps you to be able to know the different types of requests and how to deal with them all in the most loving and helpful way possible (even when you deny the request).

So, what I would love to ask of each of you who reads this is that you do yourself a favor this weekend. It can be something big, or something as small as taking a few minutes here and there to simply stop and take a few deep breaths in the most quiet space that you can find. Do something you love. Read, listen to your favorite song while dancing in your bedroom, take a walk around the block or in the woods, dust off your paints and paint a little, write in a journal, meditate, get out your old woodworking tools and fire them up or just go out and gather some materials, watch a funny movie, hell-watch a scary movie (that makes some of us happy)-you get the point. Each of us has varying amounts of time that we can devote to self care. The important part is to start somewhere. As time goes by, you will find that as you make it part of your life, more opportunities will present themselves.

Some of you will say that it’s impossible. For those of you thinking that-I will leave you with an example. There is a woman who lives in my building who is utterly miserable every day and she loves telling anyone who will listen all about it. Just yesterday, I was on my way out to go grocery shopping, and this woman was sitting by the entrance waiting for a pizza delivery.

Her spin on this was that she was ordering pizza because she simply didn’t have the energy to cook that day. She said it with such agony that it was painful to watch. My reply to her was, “Well then, looks like you are listening to your body. Enjoy your treat and the time you’ve made for yourself to relax”.

She did not like this reply at all and said, “If only I were young again I could enjoy my life”.

My response was, “Enjoy yourself today. Get that pizza and go watch your favorite movie”.

Nope! She still wasn’t buying it. She said, “It isn’t possible for me to have fun and enjoy my life”.

At this point, I decided that I wasn’t going to continue to feed her negativity and said, “You know what? You’re right! You can’t have any fun at all-because you said so”.

With that, I wished her a good rest and a delicious pizza and went about my day.

The point? What we tell ourselves becomes the truth. Have a wonderful weekend, doing something just for you. I’ll be beginning National Poetry Writing Month tomorrow which is an absolute joy for me. It makes April one of my favorite months of the year. The rest of this weekend will be dedicated to giving my achy muscles a much needed rest, working with some crystals, and curling up with a good book.

Feel free to share your enjoyment with the rest of us! Seeing other people listening to their souls and bodies uplifts us all-well most of us. The remainder are in more need of self care than they probably realize. What pops into your mind as something that you can do for yourself this weekend?

 

 

Health Update…Thanks For The Love and Support

Before I give you the update, I have to express my gratitude first. There has been such an outpouring of love and support that it is overwhelming…in a most wonderful way. Thank you…for being there…for being you!

Last week, I had a uterine biopsy due to the possibility that there might be cancer. Let me tell you…I feel so lucky. My testing was done at the perfect time…before things could get to that point. There were two issues found, one of which was on the way to creating the perfect storm. The specialist has assured me that I’m going to be fine with several months of medication.

So, while I’ll be dealing with side effects for a little while…I’m great and am looking forward to feeling better as time goes by and healing continues. Those of you who have been coming here for a while know all too well that I don’t hold a lot back. For anyone new who might be stopping in today…you’ll figure that out quickly. *smiles*

I have to tell all of you that I feel as though I’ve gotten a new lease on life. There is a lot of (wonderful) work to do, many adventures to have, and most importantly self care and making happiness a priority. There’s going to be a lot more dream chasing going on. First steps first…my number one priority is to get a bit stronger. I’ve been increasingly sick with these issues over the past few years, as this hasn’t happened overnight, so it’ll take a little time to build myself up. Know what? I look forward to it and plan on making the most of each precious day. The fact that I’m incredibly blessed isn’t lost on me.