mold illness

One day at a time, one foot in front of the other

~ gypsy116toast2001 ~ Leave a comment

I’ve just started reading No Impact Man by Colin Beavan. The book follows a man and his family, over a year, while they try to lower their impact on the environment to virtually nothing. I bought this book because I’ve read other life as experiment books and enjoyed them and I was hoping to pick up some tips on decreasing my impact.

This is something that I think about a lot. And when I say think about, what I actually mean is panic. There are so many changes that I’d like to make, feel like I need to make, that my illness gets in the way of.

Things like making my own self care products, shopping locally, walking instead of driving… Are all rendered impossible when you don’t even have the energy to get through the basics of living on a daily basis.

I am constantly telling myself to focus on my healing. The more I heal, the more I will be able to do and the more I will be able to live a life aligned with my values. This is true, but… The guilt I feel…. And the panic…

*Sigh* One day at a time, one foot in front of the other…

Guilt Becomes Her

~ gypsy116toast2001 ~ Leave a comment

I have been seeing a nutritionist/health coach for the past several months. I’m supposed to have an appointment with her today but I cancelled and… I’m filled with guilt.

She, the nutritionist has me doing SCD(specific carbohydrate diet). I’ve made some pretty significant gains in my health since starting the diet, including an increase in energy. I think of it this way, if I had a million steps I’d have to take in energy increases from where I started to get to a healthy energy level, I’ve taken about 100 since the start of the diet. I still have a long way to go but that’s a substantial increase, given I’ve only been going the opposite direction for the past few years.

It was wonderful to feel like I could move. So wonderful that I wanted to move more and more. So I did.

The feeling of freedom from being able to move my body when I have not been able to in so long, combined with a sense of panic caused by a recent health scare (too much to cover here but my naturopath thought there was a worsening in insulin resistance and was advocating for a medication that I do not want to take. False alarm but…) seems to have caused a relapse in some obsessive thoughts/behaviors related to old eating disorders and long story short… I did too much and I crashed hard.

This is not the end of the world, though admittedly it did feel that way. I just need to rest….a lot. So, I cancelled all of my appointments for the week. I’m feeling better. I could technically handle the appointment today but I don’t want to.

I’m going shopping with my sister this weekend. She needs clothes, so does my son. I’ve been looking forward to it and I want to make sure I have the energy to go. I haven’t been able to do something like this in near a year (I’ve done all of my shopping on line). Appointments take a lot out of me and I get so activated that I can’t sleep after.

I do believe I’m making the decision that is best for me right now but…I can’t shake the guilt. I should go to the appointment. I should be able to handle it. I should be a good little girl and not make a fuss or cause any inconvenience for anyone. *Sigh* Man, childhood programming is a bitch.

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.

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.