Lead Poisoning is Real

I finally found a decent picture of the vintage army trunk that poisoned myself as a teen and my baby (now 7). I purchased it from a flea market to keep my records in and someone before me had painted it an obnoxious green so my plan was to strip it and repaint it something authentic. My mom had no issue with this and I began the work, maybe 13 or 14 years old. It was really hard to strip the paint off and now I know why!

I was 27 when I had my son and I had always had this trunk and so probably continually poisoned myself. I believe I gave him lead in utero and/or through my milk. He was failure to thrive, very irritable, terrible sleeper, and delayed in all gross and fine motor. He was 16 months in this picture and could crawl and pull to stand. He had is lead tested at WIC at 6, 12, and 18 months. The 18 months number was higher than 12 months and even though the doctor had nothing to say about it, I jumped into action.

I had heard about Tamara’s work a few months or so before this and she was able to send me swabs. I was sure it was our radiators in our old apartment in Chicago, but it wasn’t. It was my trunk. I did not know at the time that there was anything I should do besides get rid of the item, which I did but it took me a while to find a way to get it down to the dumpster as a single parent. I did write all over it in permanent marker so someone didn’t pull it out to keep. Before I took it out, I covered it in a folded sheet to keep his hands off of it, and I’m sure I vacuumed when I removed it.

We both have lasting affects from lead. Most notably my son has global hypotonia, growth delays, and anxiety. I have numerous health conditions that could be connected, but as a teen I developed anxiety, OCD, depression, self harm, and barely survived high school. This is why I am here.

This is why I am passionate about learning about lead and helping others.

Lead is not only found in vintage and older items. It is not only found in homes built before 1978. I could walk into any home goods store today and definitely find something with lead on it (household keys, lead curtain weights, most dishes, garden hoses, costume jewelry, crayons, to name a few). And just because you or your parents survived, doesn’t mean it didn’t do lasting damage to you and have an impact on your long term health and genetics.

Please check out Tamara’s website, documentary (currently available on YouTube and not quite finished), her Facebook page and group.

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Poofy CBD Sale!

For April 20th only, the Poofy CBD line is 20% off. Great products and an even better price!

Here is my affiliate link. I get a percentage of sales when people shop through my link. All orders handled and processed by Poofy Organics.

I have been out of CBD oil for quite a while and will use this chance to get back on it. I am hoping it will help bring down my inflammation again and decrease some of my chiari symptoms.

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Lead in Corelle Dishes

This is a huge deal! I am the one who wrote to Corelle. Of course they stopped replying to me once this was published, but the truth is out. I was lead poisoned and so was Wallace (both by a vintage army trunk) so using items in our home that contain any lead is not an option. Small amounts add up and cause long term damage.

Follow this link for the article and I recommend following Tamara on Facebook as well as using the search bar on her site. If it weren’t for Tamara, I would not have found out what was poisoning my toddler and then put the pieces together for my own poisoning 14 years earlier.

A box of known and suspected lead items headed for the garage.

The picture I sent to Corelle customer service of all of my dishes.

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Me Update

I haven’t been on here much and can’t recall what I last wrote about and what details I shared.

In November I was diagnosed with chiari malformation and told I should have decompression surgery. I was originally scheduled for mid February, which was then moved back one week by the hospital. But in January and February I had four illnesses, lost 8lbs, coughed for 8 weeks, bruised or broke a rib, and was still sick come the 2nd date. So surgery had to be postponed and the next available date was mid April.

Now with corona virus on the loose all non essential/emergency medical procedures and appointments are on hold. I really understand this but it doesn’t make it any less frustrating and upsetting. This surgery has the potential to decrease my symptoms and halt progression by restoring proper fluid flow to my brain and relieving compression on my brain stem and cerebellum. Though I am scared and not looking forward to recovery, I was prepared and had hope.

My symptoms have increased since diagnosis, and I am sure stress, sugar, and illness haven’t helped. I have had trouble walking, more migraines and high pain days, and more issues with words (one of the reasons I have not written here even semi regularly). I have also had more instances of thrumming in my ear and downward nystagmus.

When I was diagnosed I was determined to increase my strength by doing small work outs multiple times a week and hopefully have a smoother recovery. One day I did about 10 minutes of exercise, washed dishes, took Wallace to Meijer to pick up our Christmas photos, and then went for a walk. By the time we got halfway into our walk, I was barely in control of my left leg. It was like my brain wasn’t getting the signal through. I was walking like I was in recovery from a stroke and it took my whole body and concentration to keep my gait going. It took four days to get back to decent movement.

For the month of January, more than half the days were high pain, a 7 or above for my head and neck. It was a miserable month! Oddly, some cold medicines I took for strep and then flu help with the pressure in my head. I still have constant pain in my back, hands, and feet, but I have gradually gotten used to functioning with that over the last 6 years. In July I had my tongue tie released and it greatly decreased the neck pain I was waking up with. So that’s been good.

When I have balance/walking issues I feel really pathetic and like I have to rely too much on Wallace’s help. A seven (oh my god!) year old should not have to take care of his parent. But he has been amazing and sweet and usually willing to help whether I need a hand to hold, a Kleenex, or a popsicle. I do make sure I still do a lot to help him with things and offer to read and play games when I can.

It’s also hard to feel competent when my brain is struggling to find words and make sentences. It’s been getting harder lately and I have to put more effort into typing and talking. This was the main symptom that made me decide to keep looking for a root cause. I knew something wasn’t right and it made me very uneasy. It used to be just a word now and then or an occasional pause. Now I frequently can’t find a word while talking and take many pauses to get my words lined up and out the door. I have begun giving people a heads up so they know I need a little patience when trying to communicate. I have also started missing words when I am typing or writing the wrong word (such as right instead of write). I am a total word nerd and it is really frustrating when I can’t say what I need to.

I am working on listening to How Not to Die on audio through the digital download program from my library. I am also back to trying to gain some strength and endurance (couldn’t think of that word earlier) while gaining back the weight I lost while sick. I had wanted to go back to pelvic floor physical therapy – coughing for so long made my bladder issues worse and the therapist I had has done a lot of work with people with neurological conditions – but therapy is on hold now. I would like to order myself some CBD oil again but I can’t budget it at the moment. After struggling a lot emotionally after diagnosis I was finally able to find a counselor, but have only managed to have three appointment.

But right now, I am sitting with a cat on my lap, tired, but content with the day.

I still have a fundraiser going on as I am in the perpetual state of waiting for surgery and recovery and was barely able to work before this crisis. If you are able to contribute a few dollars or more, I would really appreciate it. If you can’t right now, I understand. It’s tough for all of us and there is so much uncertainty. Please consider sharing my fundraiser link, especially on Facebook where Freefunder will count shares and contribute to my goal.

Surgery Fundraiser

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This Post Is About My Hair

I haven’t shaved my head since before we moved in late October. Partly because I have been busy. Partly because the new place doesn’t have a working outlet in the bathroom. Partly because it’s cold in Michigan. Partly because leaning over to shave my head hurts my neck and aggravates things. So I just hadn’t bothered for a month and a half.

Then, on November 21, I got the diagnosis of chiari with surgery as the course of treatment. The doctor’s assistant said something about not shaving my head before surgery, the whole world was already spinning, so it took me a minute to grasp. This was clearly something they tell everyone and they weren’t expecting to be talking to a woman who has predominantly shaved her own head for the past 20 years (a few winters I have grown it out a bit). It is so someone doesn’t knick their head before surgery and risk infection. It is so the doctor can shave only the necessary section.

I decided I would let my hair grow out so that I can get it to a reasonable length before surgery. I know I won’t be shaving my own head for a long time and dealing with that with a 4-6in incission/scar on the back of my head would not be pleasant. When I talked to the doctor’s nurse last week, I asked about this. She clearly wasn’t ready for me to have thought this was funny, buy we came to the understanding that it’s okay for me to get a haircut about a week before surgery. I will got to my local hipster barber, where I get a nod when I come in, so they can trim it up nicely. So, three more weeks of growth here I come!

For some history, I first shaved my head when I was 14 in order to donate my hair to an organization for kids with cancer. I got a lot of flack for that from peers and family and experimented with short styles the rest of high school. I also started studying Buddhism, though have funnily become attached to my lack of hair.

Most people who know me now and see me regularly are surprised when my hair isn’t shaved every few weeks. Wallace is used to seeing and feeling my shaved head, but he also really likes it when I grow it out a bit.

The last time I grew it out a bit, I found a local barber shop where I woul be welcome. I went semi regularly for some queer cuts, which was always an interesting experience as a woman in a male space. (Hint: they got over it.)

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Still Standing

Image from @how.u.feeling

If you ask me how I am, I don’t know if you want to hear the truth or just reassurance that I am still trucking along. I don’t want to seem like I’m whining and I don’t want to always be talking about my health issues, diagnoses, pain, and upcoming surgery. Sometimes I need to talk about it though. Sometimes I just need to be heard and validated and believed. I don’t know how to tell what I need in which moment.

I think it scares people even more when I talk about how this all is affecting my mental health. It seems people have an easier time hearing about the concrete medical things and not so much about how I am struggling emotionally. The few weeks after I got the chiari diagnosis and surgery date, I really struggled. I cried every single day. When I tried to talk to friends about this, I got radio silence or uncomfortable words of support. Then there was my dad who told me to go on medication like him. Once I realized how uncomfortable peoole were with this, I stopped talking about it.

Some of my symptoms hurt a lot and some make me feel crazy. They all come and go except for the constant low deep ache in my body and the chronic fatigue. I get a thrumming in my ear now and then, usually when washing dishes or doing something in that same position. If I overdo it physically, which is way less than even normal me could handle, I have an issue where my left leg stops working properly and it becomes very hard to walk. It’s as if my brain can’t get the signal to my muscles and nerves, so the rest of my body has to pick up the slack, which is exhausting.

I counted 103 migraine days in 2019 and so far 5 in 2020. Sometimes they are more typical migraines with deep thrumming pain on one side. But the chiari ones feel like the claw end of a hammer is digging up into the back of my neck/head. Add to that front of head and eye pain, light, sound, and scent sensitivity, and an inability to focus and find words. Yesterday was a bad one that medicine didn’t touch.

All of this greatly disrupts my life. It also makes me feel hopeless and very negative. When the neurosurgeon asked me if I have pain free days, I said, “in my whole body? No.” Woke up with no migraine so here’s to a low pain day where I can function, have fun with my kid, and have a life.

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MisLEAD: documentary screening on YouTube

I need you to go and watch this now. I will be writing a review, but I don’t want you to wait for that. Here’s the link to Tamara’s site with the link the the documentary. I want you to check out her site too. Go browse. I’m here to talk if you get overwhelmed or if it freaks you out. The documentary is not made in a way to fear-monger, but it’s scary stuff.

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Brain Squeeze

Just as this blog was started to document my journey of single parenting by choice and be a safe place to process it all, I have started a YouTube channel. It is my safe place to share about the process of diagnosis and treatment for chiari malformation.

So far, it is just unedited rambling so I can get my thoughts out there. I have found it helpful to watch videos of and talk online with people who also have chiari so I want to add my voice and experience to the mix. I do hope to learn some editing and create some basic things like a banner, but I also know that when it comes to recovering from surgery that all I might be able to handle are unedited videos.

And ad they say, please like and subscribe! If there is something you would be interested in hearing about or a question, please comment here or there and let me know.

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I need to make this brief as it is late and I have a migraine. I need to stop avoiding this space and to just put it here, which makes it more real somehow.

Last Thursday I finally saw a neurosurgeon. I say finally because it was about 10 months since I heard about chiari malformation and started researching it. I had MRIs done in early summer but the issues were missed and the neurologist’s office refused to give them a second reading. It took at least four schedule appointments with the neurosurgeon and changing my insurance before I could see her.

It then took her 10 minutes to pronounce a diagnosis and a course of treatment.

That is when it felt like the world was expanding and contracting. I had no air and too much at the same time. I had storms of words in my brain and could barely make sentences.

I didn’t make it through the checkout process before I started crying. Then I went to a bathroom and sobbed until someone else needed to use it. I walked though the rain across the hospital campus to my car so I could cry without being forced to look at people. I have cried every day since.

I have Chiari Malformation type 1 and the suggested treatment is called decompression surgery. It might not reverse my symptoms, but it should decrease my pain and halt progression.

Primarily, it is scary as fuck.

It is also validating. Finally someone has figured out what is wrong with me! I am not making it up!

There is a huge list of symptoms associated with Chiari. I also likely have Ehlers Danlos syndrome, there are many types, but because I am over the age of 25 there are no doctors in Michigan who will take me on and diagnose me.

Here is what I deal with.

  • fatigue
  • chronic pain in hands and feet (had arthritis ruled out)
  • neck pain
  • migraines
  • intracranial hypertension
  • pressure headaches
  • tinnitus
  • nystagmus when looking down
  • tremor
  • sometimes one leg starts to give out when I walk
  • orthostatic hypotension
  • numb patches on my back
  • bladder issues (I even had tests done on my bladder, so fucking not fun, and 6 weeks of pelvic floor therapy)
  • popping in my back
  • dizziness/vertigo
  • nausea
  • heart palpitations
  • low blood pressure
  • brain fog
  • word recall (aphasia)
  • sensitivity to sounds, smells, and light
  • pain behind my eyes
  • eyelid spasms
  • pressure in my ears
  • running water sound in my ears
  • burning sensations in my body
  • slurred speech
  • cold hands and feet
  • gas and bloating
  • food sensitivities (this has to do with a nerve that gets impacted)
  • muscle weakness
  • inability to sweat
  • excessive thirst
  • drooling
  • swollen lymph nodes

I’m really good at faking it, hiding my symptoms, and not letting people know how much pain I am in. It has been getting harder to hide from myself and this doctor called me out on it. I do not have pain free days. This tremor is new and my symptoms are getting worse.

I am so scared. But my only choice is to keep going.

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Wallace Said Wednesday 2

“When I grow up, I’m going to live in the wild.”

Morning snuggles. Totally left field, but he had ideas of what he would do living in the wild, like watching birds to learn how to make birds nests to use as pots.

“My electronic eyes did it. I’m hypnotyzing you.”

He told me a math problem and I asked him how his brain figured it out. This is what I got… and he added about how he took out his regular eyes last night and put them under his pillow. Huh???

“I never knew there was corners in this place.”

Looking around in the living room of our new apartment.

“You would look like a teenager with a tiny adult.”

His reasoning as to why I should carry his lunch box and he should carry his back pack on the way into school.

“Pretend I’m a carrot. My “best by” date is March 11th. Hahahaha!”

That’s his birthday. This was while eating. No carrots around.

Me: take it all off.

Him: take it Olaf? Hahahaha

Trying to get him to change his clothes so he can go play in the first snow and he keeps putting something back on.

“Is my name John, John Wilbert Wiggles?”

Yeh, no idea.

“I think your name might be Pocket Watch.”

We were eating dinner. Came out of nowhere.

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