chronic illness

You don’t have cancer, you’re fine!

~ gypsy116toast2001 ~ Leave a comment

I had my appointment with the hematologist last week. I want to take you through a brief synopsis of said appointment, you know, in case you’ve only ever been to the doctor for things they see everyday… Things that are acknowledged… Things that are recognized as real and therefore you were treated as valid…

I want to preface this by saying that this doctor did seem to be a perfectly lovely human being. She was kind and knowledgeable and did seem to genuinely want to help. This is in stark contrast to many, many (not all but MANY) doctors that I have seen who instead appear to not have much knowledge at all, while simultaneously acting like they know everything and completely discounting anything I may say as having any value, if they even acknowledge the fact that I’m speaking at all. That said, let’s get to the appointment shall we.

A little back story, I am an anxious person. I don’t want to get into all of that now but I am. Anxious. Appointments of any type tend to have me extremely overwhelmed to the point of nearing panic. This has improved over the years and I can mostly hide it and get through appointments seeming like a fairly normal human being instead of the ball of anxiety wrapped in skin that I feel myself to be. This appointment was different.

I spent all morning in a state of panic. I was really nervous about having to ask about the possibility of MCAS. I had asked my naturopath if she would write something for me to bring. She didn’t think it was necessary as she thought the doctor would have heard of it. I wasn’t worried about her not having heard of it but more of me not being heard when I brought it up(because this has commonly been my experience) but she’s a busy woman so I didn’t push it.

On top of the normal appointment anxiety and the MCAS question induced panic, the day was just one of those where everything seems to go wrong and I ended up being 10 minutes late. I am NEVER late. I prefer to arrive at least ten minutes early because… You guessed it, the possibility of being late causes me copious amounts of anxiety.

Needless to say, I was a ball of raw nerves when the doctor walked in (thank God my sister went with me, in case I lost my words because I did just that). Apparently, so much so that it was readily visible because it was the first thing said doctor commented on when she walked in the door (she wrongly assumed that I was anxious about my diagnosis, again wrongly assuming I thought it might be cancer).

She went through all of my blood work to explain to me that I do not have cancer and I am fine. I’m fact, had I (and my sister. Thank you, I love you) not brought up MCAS, that would have been the whole of the appointment. You don’t have cancer therefore, you are fine (giving credence to my belief that people only take you seriously if you have cancer, no matter how sick you are with something else). But I’m not fine. I have been very sick for eleven years. If she wasn’t aware of that (because, you know, why would my PCP want to mention that in my referral), she most definitely was aware that my white blood cell counts have been high, chronically, for years. That’s why I’m here.

Her explanation was that my body was just reacting to things. Well yeah, no shit. Why?

I said that I wasn’t worried about cancer but that I think that I have Mast Cell Activation Syndrome and my sister filled in the back story because… again…anxiety…no words. She, the doctor not my sister, said that yes, that could account for my wonky white blood cells and ordered more tests(I’m still unclear on the results) and sent a referral for an immunologist.

This appointment actually went really well, like this is the best outcome I could have hoped for but… If I hadn’t pushed, it would have been, you don’t have cancer, you’re fine. No acknowledgement of anything else.

When we were getting ready to go, the doctor said something along the lines of, sometimes it just takes awhile to get a diagnosis, especially with these rare diseases. I think she was trying to be comforting and I really do appreciate that but …. It was said so nonchalantly and off the cuff, like over a decade of having a debilitating illness is no big deal. Eh, it’s just the way it is. But it isn’t nothing. Have you, dear doctor, ever been sick for even a year straight? I doubt it, otherwise you wouldn’t be so nonchalant. I understand that doctors are only human and that they only have the information that they have but maybe, just maybe, if more doctors listened to their patients and took them seriously, it wouldn’t take more than a decade for people who are very ill, to find a diagnosis and hopefully treatment that actually helps.

Halloween poisoning

~ gypsy116toast2001 ~ Leave a comment

It’s Halloween and I’m sitting at my sister’s house, alone, trying not to feel too depressed.

My child. My partner. My sister and nieces… Are all out trick or treating without me. I went briefly but I’m too sick to continue.

It’s hard when illness prevents you from doing things with those that you love. Halloween is particularly hard for me.

Instead of wallowing in self pity, I think I’ll talk to you all.

So, anyway…I poisoned myself today. No, I didn’t like drink some Drano or take a bottle of aspirin or even eat some food that had gone bad or any contaminated Halloween candy. What I did do though, was put on some deodorant.

I use a non toxic deodorant, which I had accidentally left downstairs. I, being upstairs and thinking that my mom had switched to a non toxic one too, used hers. I didn’t have the energy to go back down to the basement and I didn’t want to be smelly. I may not be able to participate in Halloween the way that I would like but I was still going to be around people.

Anyway, definitely not non toxic. Toxic. Very, very toxic.

Immediately my head started to pound and my stomach turn and I wanted nothing more than to remove this wretched substance from skin. I felt the little energy that I had draining away. It would not come off. I had to get back in the shower and I could still faintly smell it.

My first thought was “why the fuck is this in my house? Everyone knows how sick I am and how fucking sensitive I am”. Immediately followed by “wait, no, why is this even in the world?”

I recently watched a video about Mast Cell Activation Syndrome (MCAS), where they used the metaphor of a canary in a coal mine. The world’s most sensitive people are dropping like flies.

If toxins are affecting those of us living with chronic illness, they are affecting the rest of you too, whether you realize it or not. We are the dead canaries. It’s time to run folks.

Awhile back, I sent some links to my mom for some less toxic hair sprays. Hers sends me running for the bathroom, violently dry heaving. She was not receptive. I was talking to my sister about it and she said something along the lines of it being a lot to expect of her to switch, given what our mom does for a living, which is hair. She’s a beautician. Hair spray is her life.

At the time, I agreed. It is a lot to ask. The more I think though, hmm, fuck that.

Changing to healthier products is exactly what we should be asking of the people who style hair for a living. They use more product than anyone. They influence what the public purchases. Therefore, they have the most responsibility to use ethical products. This goes for any industry.

Period. The end.

Between a Rock and a Hard Place

~ gypsy116toast2001 ~ Leave a comment

What do you do when you are stuck? When you are, as the proverbia expression goes, between a rock and a hard place?

Maybe it’s more of a chicken and egg thing? I don’t know. If our former decisions cause our current reality but our decisions have been made of wounds that can’t heal without a new reality, what then? How do we change?

If you are so sick that you can’t heal without help but the only help available to you is also harmful to you, what do you do?

If healing requires being in a safe environment, free from trauma but you aren’t physically capable of living on your own until you heal and the environment you are currently in and the only other option you can see are filled with trauma, what then?

I do not want this blog to be a negative space and I appologize for it being so thus far. I would like this to be a place of hope but I’m really struggling right now. This space is currently a reflection of that.

I’m not meaning to come across as hopeless because I’m truth I’m not. I have faith and hope but the truth also holds a lot of darkness. I don’t believe we are served by trying to stay only in the light when there are shadows that are need of exploration. I think it’s necessary to explore these shadows publicly. How else do we create awareness? How else do create change?

Please bare with me while I struggle.

Unhappy Halloween

~ gypsy116toast2001 ~ Leave a comment

I’ve made the final decision. I will not be dressing up for Halloween this year. I’m just too sick. It isn’t possible.

This is, of course, something that I already knew but I didn’t want to accept it.

I’m hopeful that because now we know what we’re working with, symptoms will be under control by next year.

I’m hopeful that the hematologist will be able to give me an official medical diagnosis of MCAS.

I’m hopeful that this will mean that I will be taken at least somewhat more seriously.

I am hopeful but for now this really sucks. Anyone who knows me knows how much I love Halloween. You may or may not know that I wasn’t aloud to celebrate it as a child for “religious” reasons and that that makes it all the more important to me now.

*sigh*

Now to figure out how I’m going to manage taking my son trick or treating….

I need a wheelchair.

Do I wish I had cancer, of course not, but….

~ gypsy116toast2001 ~ 2 Comments

I live with my parents out of necessity.

I moved in with them before the onset of my physical illness for reasons that I’m not going to get into in this post.

I’m treated like a spoiled brat for needing the help that I need (I’m not going to get into those specifics here either) and not being able to help in the ways thay I am not.

I, of course, internalized this. While I know this isn’t true, my spoiled bratness, I nevertheless gaslight myself constantly (Maybe I don’t need help with that. I can do it, I’m just (insert any number of negative and untrue things), which leads to me overdoing and making myself sicker, thus needing more help, getting more negative feedback and gaslighting myself some more….

Sigh

I read a book recently, How to Be sick: A Buddist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard. I’m not going to give a full review of the book here, I found some things problematic but it was worth the read (if you read it, let me know what you think). What really struck me was the amount of support she received from her husband (also unsurprisingly, she received much better care and much more support from her medical team than I could ever dream of. Being that she is not a poor woman with a history of psychiatric issues but instead a wealthy white woman with a career in academia, she was actually taken seriously both when she became and continued to be sick). Toni’s husband, of course has had struggles with the change in his life due to his wife’s illness but it appears that overall he does not blame her, he takes on the extra responsibilities that are necessary and… He does things to try and make her existence more liveable (like not just cook for her but make her delicious meals for dinner every night) because he gets that however hard this is for him, it doesn’t compare to how hard it is for her. Reading this, I felt both hopeful and so extremely sad. It fills my heart to know that there are people who do try and understand and that there are people with chronic illness that are not living my experience but… I know that it’s privilege and most of us do not have that privilege.

I’m gonna let you in on a little secret (or maybe it’s not a secret, maybe you’ve heard this before but it feels like a shameful secret), many people who are living with chronic illness, at some point or another have had the thought/feeling that they wish that they had cancer instead of their specific illness, myself included. Do I actually wish that I have cancer? Fuck no. I don’t think anyone really does but the feeling/thoughts come up none the less. Some people reason that with cancer, there is treatment. You get treatment and you either get better or you die and that seems better than living in constant misery for the rest of their lives. That’s valid, though I don’t subscribe to that reasoning myself. I know that some people do recover and I have hope that I will. Should I not then I believe that this is my path and I would have to come to terms with that at some point.

My reason (and others I’ve spoken to/read about) for feeling this is that people take cancer seriously. They treat people with cancer like they are very sick and many offer help. There are organizations that offer free help to cancer patients, things like cleaning and grocery shopping. There should be. Don’t get me wrong, I am glad these services are available and if anything wish there were more but… why aren’t these same types of services available to those of us with debilitating chronic illnesses?

Many of us have no support. No one really even believes us. As far as I know there are no services to help us (if I’m wrong, please let me know), but I, and many others are unable to do these things for ourselves.

I was really sick before I moved out of the mold. When I moved out, as happens when you body starts to detox, I got sicker. Then I got even sicker when I actively started trying to detox. Then I got covid and the amount my illness has increased is indescribable. I was unable to do things like cook and clean when I was sick initially, now….sigh.

I’m lucky that I have support but I get very little help and a whole lot of shame and guilt from them. I guess all I’m saying is that there are a lot of people like me. We need you to listen to us and believe us. If you are able we need your support. We need help.

Here I go, I’m people pleasing again…

~ gypsy116toast2001 ~ Leave a comment

Last night I went to the ER.

I’ve been having chest pain since covid, it got worse with a few accompanying symptoms that made me think it would be best to get checked. I’m fine. I don’t want to talk about that now.

What I do want to talk about is trauma. No, not really, more just the impact.

My son woke up when I was getting ready to leave in the ambulance. He clung to me and cried. He didn’t want me to and was obviously scared. I hugged him and told him that I was ok but I don’t feel very well and the doctor needed to look at me but if be back soon. He cried. He clung. I had a hard time letting him go. I think having to pry him off of me and give him to my mom while he was in so much distress hurt my chest more then the pain I was having.

In the ambulance the EMT asked about my son… His name, age, if he’s my only child…. And then he said “he sure is spoiled isn’t he”.

I was taken completely off guard but it felt like a kick to the chest. I wanted to say, “no, he’s not. He’s three and was woken in the middle of the night to his mom leaving in an ambulance. He’s scared and rightfully so you. Have a little compassion, asshole”.

Do you know how I actually responded? A polite laugh, suggesting that he was right, my son is spoiled.

What does that have to do with trauma? My relationships, starting at birth have taught me that it’s best to be polite when confronted with negativity. It’s how you stay safe.

There have been times I’m my life where I have had other reactions, some also from trauma and some more authentic but right now … I have become so conditioned to be in fear that I sold my son out.

Fuck that. The more I become aware of just how often I fawn, the more motivated I become to heal. For myself. For my son. For everyone.

The Impossible Task of Living Whilst Sick

~ gypsy116toast2001 ~ Leave a comment

I made it out to the garden today. I was able to tolerate walking around, checking on the plants for about five minutes.
This is huge. I have not been outside since I came down with covid over two weeks ago . I rarely watch TV anymore but I’ve been doing nothing but laying on the couch watching movies. I haven’t even been well enough to read.
I was watching Titanic the other day. I don’t think I’ve ever watched that movie without crying. The love story gets to me. I am a hopeless romantic whether I like to admit it or not. I also find it hard to separate myself from the tragedy of it all through time. How terrifying it must have been to have really been there. The chaos and the uncertainty. The way such things bring out the best and the worst in people and how I’m not sure which breaks my heart more…both, I suppose, in different ways.
Though I’ve seen it many times and not in many years, I found myself a huddled mess of tears and snot, sobbing with an ache in my chest usually reserved for tragedies of my own making.
This viewing filled me with the understanding of the beauty of life and the gift that it is, tragedy and all. Simultaneously, all of the grief of my life threatened to drown me.
The truth is that I was already incredibly sick before my son contracted covid and I did what most moms do…cared for him, knowing it was going to take me down much harder than it did him. The truth is, I’ve been mostly bedridden since my trip to the ER when I attempted to go camping in July. While my blood tests are showing evidence of healing that is taking place within my body, my body is yet to show any signs of improvement. Quite the opposite in fact.
Chronic illness is complicated. I can be filled with awe and gratitude for my life and the wonderful things in it while feeling tremendous guilt that I am wasting it. I am not able to be the mom and partner that I could be if I were not ill. There are so many ways in which I have to compromise myself and my values because of a body that will not cooperate no matter how hard I will it to. Though I know better, it is hard not to feel that I am too blame.
I’m living with a lot of shame.
I do believe that I am healing. Now if I could just figure out how to live while sick.

Sick and Tired

~ gypsy116toast2001 ~ Leave a comment

I am sick and I am tired.

Very literally. Every second of every moment of every day for the past nearly eleven years.

There is no break from this for me.

Today I’m talking more figuratively than literally, however.

I am so sick and tired of the lack of awareness around many, if not most, chronic illnesses. I’m tired of the misinformation,the stigma,the biases. I’m sick of the judgement and the mistreatment. I am just so very sick and tired.

Recently, I went to the doctor, to my primary care physician. This is a new doctor. My previous PCP dropped me without warning because I had not been to their office in three years. The appointment I had only served as a reminder of why I avoid doctors visits unless absolutely necessary.

I have recently started seeing a naturopathic doctor for mold toxicity/CFS (CIRS, fibromyalgia…the diagnoses do not matter…the symptoms and getting to the roots does). She, the naturopath, asked me to see my primary to get some follow up blood tests and an exam. If her medical director did the exam, I’d have to pay out of pocket. Knowing my financial situation, she was trying to save me money.

Even though I brought my labs that had just been done, showing abnormalities that should be investigated further (suggesting diabetes and possible liver infection), this new PCP refused to do the exam until after he reran the original tests. He also completely ignored my request for him to communicate with my naturopath. Ignored, not refused, he acted like I was not speaking.

To say I’m over our current medical system is an understatement.