Chronic Illness

Chronic Illness

This month was my 4 year anniversary of my journey with breast cancer. I started this blog talking about my cancer experience. Feel free to check out my posts from 2021 where I have shared not only about my cancer but how much it affected me and was the start of my mental health struggles. The great thing about having a blog is it’s like my own personal history book that I can look back to and see what happened then, what’s changed, and what’s continued. I have not really struggled with memories of my cancer and everything associated but this year seems different. 

I started working a real job at 15 and have only ever missed a handful of work days until the last 4 years. As a self employed person for 25 of those years, most weeks I worked 60 plus hours a week, on call 24/7/365 for many years. I was always considered very dependable and a good hard worker, willing to do whatever was needed to help. 

Recently in conversation it was said to me how I have chronic illnesses that really affect my life. It caused me to stop and take pause as I never thought of myself in that way. Not that it isn’t true now, but for me having illness period let alone chronic illnesses is new and sadly now my reality. I never really considered how people who have met me in the last 4 years perceive me. But they’ve not seen me any other way so of course they can only go on what they know. It kind of shocked me and makes me sad at the same time.

It’s hard to adjust to my new reality. Yes, it’s been 4 years since things started for me, but to think so much has happened that it’s now chronic is challenging and frustrating. What makes illness chronic is the lack of a way to make changes or improvements to the illness. In other words, western medicine has no answers, so you’re stuck with whatever it is because they have nothing to offer you. 

Some things like osteoarthritis can be chronic but it can also just be a disorder that can be helped through joint replacements, physical therapy, medication, and more. But it can also become chronic if none of those things work for you. When you have something there’s no answers for like I do, I’m now considered and labeled chronic. 

I know how that label makes me feel but I also know how that label affects others judgement of me. I have seen so many health care providers roll their eyes at patients when issues like fibromyalgia and other immune system or umbrella term diagnoses like autonomic nervous system disorders, are discovered in their history. It’s like you aren’t taken seriously anymore because of your illness, like you’re some kind of attention seeking hypochondriac.

Years ago many thought these things were all just bullshit diagnosis in order to give a name to things that medicine couldn’t figure out. Thankfully much has changed in testing and knowledge of all these “chronic” type disorders and we now know there really are reasons for all those symptoms. 

Lately the narrative seems to try to say all illness and pain is your head and therapy can cure just about anything. I don’t buy that totally but that’s a subject for another blog post as there’s much I’d like to say about it. Stay tuned as it will be upcoming!

Here I am, retired but struggling with chronic illness, physical and mental. I’m not always sure how to navigate it, especially alone, as it is fairly new in my life. Sixty two years with no issues turned into 4 years of health struggles. 

Breast cancer was just the start of it all for me. Luckily I can say I am cancer free but the other stuff isn’t going anywhere anytime soon. I don’t know, deal with it, get over it, move on seems to be the messages I get each time a provider tells me they have no answers, dismiss me and tell me to go see someone else. Eventually I ran out of places to go and I do just deal with it because I don’t have any other options or hope for any other way. 

For me, these health struggles suck but it truly is my new reality. Chronic illnesses. I’m told non acceptance of things keep you suffering. I’m not sure about that as for me it feels more like giving up and giving in. 

8.30.25

The Great Divide

Fractured 

Depression sucks…

My depression, Lola, is still so very present. She’s foggy and heavy and currently unrelenting. Underneath feels different this time. My system feels in such disarray with cohorts and clans sparring over actions and reactions. 

Fractured. Such a great word. One that I would’ve never thought would apply to me but it’s a truly perfect description of what’s happening in my internal system not in the sense of being broken like a bone, but being fragmented, where many of my parts are at odds with each other. 

How does one’s system fracture? For me it’s about self betrayal and going against your own morals, values and beliefs. I’ve been ignoring the first serious instance of this for myself for 48 years and now it has happened again, in a bit of a different way but just as serious of an issue. 

I have no idea how to begin to repair this fracture from the past or present. I’m frozen. No options I find feel right so I just go to my modus operandi and ignore and avoid. I recognize it’s not the best strategy but as I always say, I have to work with and use what I got. 

Failing my Self in so many ways

It seems as though I have abandoned myself, failing my Self in so many ways. At some point I assumed it would catch up to me. Most days I look around and see I am within the darkness, with disappointment, defeat, deficiency and futility.  It’s hard to breathe, so we just stay still and take it, allow it all to continue to hurt, to destroy. 

Spending time with a person you loath, that you don’t like or respect, that you believe is honestly a horrible person, wears on you. Imagine that person is your own self. That’s where I’m at. I’m not living. I’m just existing and some days are excruciatingly challenging to get through. 

I’m told I have all I need inside yet don’t seem to find answers there. While I know what I don’t need, I have no idea what I do need, what might actually help me, at least help me become unfrozen, to make some type of movement towards something different. Those are two entirely different things. 

Right now I'm so lost, aimlessly wandering, searching for something that might not exist at all because I don’t really have a clue what I’m looking for.  This so called “strong and independent” woman is just a shell of what used to be there.

But is it really? Maybe I’ve always been this way but I just never noticed because I had so much else to distract and fill my time. Now with it all absent, all stripped away, all gone away, is what I find here now my true reality that I have simply ignored and avoided all these years? More things to ponder. 

Glimmers are hard to come by

Hope is fleeting. Glimmers, although not totally absent, are hard to come by. The heaviness of my reality can be crushing but is that the truth?? Or, is the absence of acceptance what’s genuinely creating the heaviness??

Acceptance often feels like abandonment and giving up on myself, my Self. That if I accept what might be true, it will end me. In some way I do believe this latest fracture happened because I think I must accept something that I absolutely do not believe in. 

Revolt. Rebellion. Mutiny. I so badly crave inner peace but the conflict currently is large. No clue what, where, when, why, how to raise the white flags, to surrender the fight, to bring myself, my Self back together. Fearful.

I haven’t found answers or even anything that might be helpful. I’m still trying but it’s hard. We’re not afraid of hard but giving up scares the shit right out of me. Self torture is slow and painful and sadly recognizable.

Are there any answers for me? No clue. 

8.19.25

 

Stuck in the Muck

Cycles of Depression

 My good friend Lola, my depression has been kicking my ass the past few days. She’s such a good thief and just as good a liar. While I might be cognizant of her ways, she still knows how to take me right out and put me back down, down in to the basement.

One thing I do appreciate about the field of medicine is how so many keep curious about how we humans work and new ways to help us heal. In my lifetime I have seen so many advancements but yet there is still so much unknown. The brain is one of those mysteries that continues to be unraveled in so many new ways. 

Depression is one of the many things that keeps being studied and for someone who lives with it I am always on the look out for new findings and knowledge. Neuroplasticity, the ability to regenerate and change neural pathways, was one of the biggest findings in recent times. Now I see more and more articles and research finally recognizing that depression isn’t always a chemical imbalance in the brain. 

Up until recently, it was widely accepted that depression had to do with low serotonin levels in the brained thus the reason for the development of anti-depressants. Thankfully medical researchers didn’t just accept that fact and continued to question the findings ruled by that only around 60% of people found any kind of relief while taking these meds.

What is now being said is depression doesn’t universally show up as low serotonin in the brain. They have now identified sub types which can help predict what treatments may be helpful. They  are also talking about the roles of our genetics and our gut microbiome and brain connection, recognizing that 90% of our serotonin is found in our gut. 

Alternative treatments including different psychedelics, deep brain stimulation, and trans cranial magnetic stimulation(TMS), in addition to correcting our gut microbiome, are just a few of the things they are looking into, trying to create a more personalized treatment for each individual person. 

https://cpdonline.co.uk/knowledge-base/mental-health/depression-research/

All these things can help keep me hopeful, to know that maybe one day Lola can give up her lying, cheating ways and find a different place in my life that’s not so dark, not so sticky, not so heavy and doesn’t keep me stuck in these cycles, these loops of hopelessness, suffering and despair.

Stuck in the muck is such a good way to describe what happens. I sometimes call her my messy brain as she can make it hard to see clearly, to know what to do, to keep my head above and just keep breathing. She makes me lose trust in my Self and question everything I am doing. When you don’t really have anyone you trust for help with the fog and doubt, it’s so hard to keep going, to know you will make it back up those steps without falling. 

The cycles of my depression are such a challenge. Often so unpredictable, like a tornado in my brain, she can wipe out all those small glimmers that may be sustaining me and kick my ass right down those steps, back to the basement, where darkness lingers. The cost of getting out is getting steep.

I can only do my best everyday and as I have mentioned many times previously, that isn’t always good enough anymore. And so it goes, up and down and all around. Kicks me when I’m up and harder when I’m down. I ride and ride and some days I just want to get off but that’s just another battle with the rest of the Squad. I can only use what I got. 

 

How much more hurt can a person endure before OD’ing on life’s torture?

Be safe out there. 

8.13.25

Sometimes you gotta let it flow…

Tears of Love

 I’ve been quiet lately as the dates can be difficult when the memories flood in. I had a really good healthy cry in the pool this week. Tears aren’t easy for me and these were so welcomed.

Losing my brother was one of the most difficult things I’ve gone through in my life and of course I miss him everyday in so many ways. It had been a while since I’ve actually remembered his last day and the details I have never shared with anyone. 

My brother had lymphoma, which is a type of cancer. I remember the day he called me in a panic as he woke up with a baseball size lump on his neck. He was working in a different state but I gave him some advice what to do. 

That began an eight month journey to a diagnosis for him. He went through so much trying to figure out what was going on. When it was finally confirmed it was lymphoma, I felt kind of relieved. Lymphoma is one of the cancers that has cure rates in the 90%. Seems silly now to have felt reassured almost at the type.

He started chemo and the first week was rough. He thought he would be able to work so he was in CA at his company condo and not here at his home. We spoke everyday and I tried to answer any questions and concerns. Week two was the beginning of a tragic end.

My brother finished his second chemo treatment, collapsed in the parking lot, and was rushed to the nearby hospital ICU. He was in and out of a coma for 47 days. Myself and his husband flew back and forth taking turns each week to make sure someone was always with him.

He was in and out of consciousness but there really wasn’t much conversation as he was very ill. His condition declined no matter what they tried. Here I am, a person in the medical field, knowing what was happening and feeling so helpless. Even with that high 90% cure rate, he was one of the unlucky few that didn’t survive it. 

My brother and I had spoken many times about our wishes in this situation of end of life. I was his medical power of attorney and also his personal rep/executor of his estate. He had everything set up through an estate attorney and I knew about all of it.

Sadly there became zero chance of him recovering and the time came. I knew what I had to do. I do not wish this responsibility on anyone. As I signed the DNR which is do not resuscitate, and ordered the withdrawal of all life support, my heart was so heavy. I held one hand and his husband held the other as he passed away, hopefully in peace. 

Signing a document and knowing that someone you love is going to die is so fucking hard. My brother picked me because he knew that I would follow his wishes and that is what gives me solace. I did what he wanted, not what anyone else wanted. It broke my heart, shattered me but it was giving him his last say to die with dignity. 

I’ve see it so many times with families trying their hardest to keep someone alive even when they’re suffering. It’s very difficult to let go but death is not about us, but about that persons journey to their next adventure and their right to choose. 

I stayed with him for almost 2 hours. The staff all knew us and were so kind even when we were a pain in the ass advocating for him. I was the last to leave, but I knew that they had to get him prepared. It was so hard to know I would never hear his voice, see his face or hug him ever again. 

I pulled myself together and spent the next few weeks getting everything ready for his services. I didn’t stop until everything was set and planned. It was all very lovely and finally after all the guests left and I was alone with my thoughts, those tears finally came.

This week that grief of these memories overcame me and I added to the volume of the pool. Probably a little bit salty but that’s OK. Tears of love flowing freely from my eyes, so needed and embraced with gentleness. To be let out and to know that feeling of love with my brother.

 It’s so hard for me to allow myself to cry and I find it so difficult to cry in front of others, but this felt so good. I think I just need the right reasons. Not every hurt deserves tears. Now my pool time is a little extra special the rest of this season, knowing it has those tears of love to embrace me the rest of the summer.

It’s the Sturgeon Full Moon tonight and the Lions Gate Portal is still open until the 12th. Some amazing energies happening out there.

Be safe! 

8.9.25