Chronic Worth

Note: This is a re-post. The only thing changed is the title, which I did because the original title didn’t convey the sentiment the heart of what was being said. Many thanks to Julie from Mountain Made Crochet for helping me out with that.

When I first came back to the blog, I wrote about my awful experiences with various  medications for autoimmune disease. On some levels I feel a lot better without them, but my pain is getting a lot worse, and my energy never did make a full comeback. Back when I wrote that post, my mindset was leaning toward telling the rheumatologist that I didn’t want to try anything else after three different ones being so awful. Now that some time has passed, I am going to ask to try again, because the pain is not conducive to much.

It’s not a fun thing to have to choose between severe pain all the time, or the possibility of medication that makes things so much worse. However, I have things that I want to do, and there are a lot of other things that can be tried, so when I have my appointment in late June, I’ve decided to be brave and give it another go. Surely one of the many medications available will be tolerable by my supremely picky body.

What finally made me decide to continue with treatment is noticing that yet another of my fingers is starting to turn sideways. The incessant body-wide pain was already making me lean in that direction, but seeing yet another joint becoming disfigured is concrete proof to me that there is damage being done that needs to be stopped. In the meantime, I’ll be here as much as I can, and I’m hoping that it’s fairly often. Now that I’ve gotten this all out in the open, the next post will be about something other than my health. It isn’t something that I really like to talk about, but it is part of my life that will be popping up.

For several reasons, I’ve felt almost ashamed to talk about my struggles here. While I do not wish for health issues to make up a large part of this blog, I have decided to be a bit more open about it. There isn’t any shame in it, and that is part of my inner narrative that I am choosing to tell to shut the hell up. All the old voices of the past, and even in our society which cause us to place our value in what we produce, what we can do, how perfect we can make ourselves look can hush. It may be a little later in life, but it’s finally coming clear to me just how wrong those voices are and how to see myself differently.

Of course we should always be doing our best to have a life which is meaningful, but it can’t always be about how much money we make, what possessions we have, and all around being a poster child of materialistic success. Not saying that having nice things is bad, it’s just that as a society we all too often make those things the measure of worthiness in a person. Coming to a realization that I will not be rejoining the rat race has really helped me to see the intrinsic value of people, and it isn’t tied to what they do and what they own. While I’ve never viewed the world in that way, this is a whole new level, because those values had been embedded in me when it came to my own worth. So glad to finally have this fading, as I had a hard time fully loving myself and feeling worthy of acceptance. Here’s to all of us finding our sense of worth.

Do any of you go through this?

Slow Road To Recovery

My presence here has been off and on, mostly off, for quite a while now. Things have been pretty rough for a hot minute. My health issues hit an all time low last year. Increased levels of pain and fatigue sent me to a rheumatologist, sometime around May or June of 2019 After decades of unnamed suffering, it was oddly comforting to finally have a confirmed diagnosis of an autoimmune disease.

I left the doctor’s office with a prescription, which I began taking the following day. This is where things get really skewed, as far as keeping track of time goes. Over the course of several weeks on the medication, I was feeling worse than before, then had a severe reaction to the new medication and was instructed to stop taking it immediately, which I did. A few weeks later, I went back to his office and was given another prescription which I began taking that week and continued to take the new stuff once a week for several months.

As time went on, there were dose increases which barely helped the pain, but gave side effects which grew worse as I continued to take it. I felt sick from my head to my toes, then my GI system began to revolt, big time. Finally, unable to stand it anymore I called the office and am glad that I did, because once again, I was told to stop taking the medication immediately, which I did. After another few week gap with medications, I went back in to see him and was prescribed weekly injections.

The first injection went pretty well, with little side effects so I felt hopeful. Then came the second one, and oh boy it was bad, plus my GI system still wasn’t healed from the previous medication. I felt relieved that I hadn’t had the prescription filled yet because I at least wanted a break from it. My body just felt like it couldn’t take any more. Then, six days after that last injection I woke up with both injection sites red and angry, and my entire body just felt ill. Feeling like I might be due for a trip to the emergency room if things got worse, I called the drug company and spoke to one of their nurses, as it was a Sunday. She was great. Despite my hope that I could continue that medication, she told me that I could not, because I was having a serious reaction to it which warranted immediate cessation of it. Thank goodness, I began to feel better over the course of about five days.

Now, I have been medication free for somewhere around three weeks (I think) and am feeling better than I have in quite some time. I’m in a good deal of pain, and my fatigue is still there but not as bad as it was before stopping the medications. That makes three different drugs, all of which made me more ill than before. So, I called the doctor’s office and left a voicemail a few weeks ago, explaining what had happened and letting them know that I’d like a break from all medications at least until my next visit which is scheduled in June. Just days after this happened, Covid-19 really hit the United States and ground everything to a halt. I did not hear back from them, as I believe they’ve temporarily closed their office. That’s fine by me, because I’m not sure if he would try to convince me to try yet another drug, and I’m not there for it.

About a week ago, I was going through some old journals to try to remember when I had seem something pretty cool that happened outside, and while flipping through the pages I found that my first entry about the medications making me extremely ill was in mid July of last year, which means that this had been going on a bit longer than I thought it had. I knew that I had spent months being ill, to the point of being mostly confined to the bed or couch, but thought it’d really gotten bad in the Fall. Wrong! It’s easy to lose track of time when illness grinds your life to a halt.

I’ve been spending the past weeks recuperating, and while it is getting better I’m not quite there yet. All those months of being utterly inactive have taken their toll, plus my autoimmune illness is not being treated. My decision though, is that I am not going to try any new medications unless/until blood work looks like it would be a necessity. I’m sure that there are other medications I can try if the need presents itself, but for now I would rather deal with the pain and give the rest of my system time to heal. For the first time in ages, I’m engaging with things I haven’t been able to for the better part of a year and that feels great. Hopefully, I’ll be making it back here again before long. While I miss writing and art, I’ve been focusing on my physical and spiritual recovery. My entire life has been changed as a result of all of this, among other things and I’m enjoying the process of slowly finding myself again.

It’s my sincere hope that all of you stay well. Take good care, and be safe out there.

Sending love your way.

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?