It’s been an exhausting autumn…

This will be the first time I can honestly utter the words “I’m looking forward to winter…”

If you know me, you know that I live in exile in Northeastern IL which I refrain from calling “the Tundra”.  It took me 5 years to break down and spend money on legit snow boots and then last year I finally got a legit winter coat.  They matter.  #lessonlearned

But regardless of where I have ever lived, winter is NOT my favorite season.  Not any part of it.  For any reason.  Christmas, Valentine’s Day and birthday gifts plus the potential for a party at New Year’s fail to make up for my dread of winter.

So… you know what my statement says about how bad our autumn has been.  #srsly  Please, winter, come–freeze and kill all that is currently coming to a close and REALLY close it out.  Let’s just clear the slate and move forward with a new life that comes with spring.  I ache for winter this year.

Not a lot has gotten done.  BigGuy had a class on the electoral process for 8 weeks and is in the midst of an 8-week class about microbiology (both online).  He took 6 weeks of chemistry and is ending another 6 weeks of electricity with our little coop.  Beyond that, he’s taken a full semester course of Dystopian Literature online and has had his once/week boys program that dives into literature and nature in the most wonderful ways.  And choir.  Both kids have choir.

Girly has done some math, practiced reading, has taken classes with our coop in cooking (12 weeks), weather and zoology.

Mama barely managed to get through it all.  I spent 10 weeks building up a medication reaction that ultimately saw me almost completely incapacitated.  I was in so much pain at one point that I managed to get out of bed to the chiropractor–which gave me some much-needed clarity (and pain relief).  I looked up the anti-anxiety medication that I had been taking only to find that I was suffering from medication reactions.  They were the less common ones, but isn’t that just how my body works?  I am always the one with the uncommon reactions to All Of The Pills.  I stopped taking them and have become a functional human being again.  Thankfully, I managed to function for an hour or three at a time at specific points of the week.  So I was able to teach the two classes I had although the second they were over–I was back to bed (and often sleeping).

Papa’s job ends on Nov. 30th and we don’t know when he will get the (far less than expected) severance they are giving.  I’m grateful we get anything, but let’s just say that facing that reality has not helped my condition since much of my developmental trauma and PTSD is triggered by my memories of living in rather severe, sleep-in-front-of-an-open-oven poverty.

Since I have recovered from the medication reaction, I have been playing catch-up.  There is a flurry of doctors appointments for me and BigGuy.  We appear to have found a potentially good neurologist who sounds like he “gets it”.  The first thing he is doing is putting BigGuy on some supplements (yup–mainstream, office-in-a-hospital, insurance-covered pediatric neurologist is starting with specific vitamins!).  He trained at Cleveland which is now the home for the Center for Functional Medicine–so that explains a lot and makes me feel worlds better.  Most of the continuing education I do for my nutrition consulting is based in functional medicine.  The doctor ordered up additional testing and a referral out to a pediatric psychiatrist well-experienced with kids in the spectrum and not just matching symptoms to drugs.

The neurologist felt strongly about BigGuy potentially having Obsessive-Compulsive Disorder (OCD).  He said that BigGuy’s response to screens might be part of that, but also his voracious reading and inability to get things done if there is a written word visible from where he is–sound more like OCD.  We had seen more traditional OCD behavior in him during the winters with hand-washing; and briefly we considered PANDAS as a potential diagnosis.  But we didn’t relate the reading to OCD.  For us, OCD was about doing things to avoid something you feared.  His reading was obsessive for sure, but it didn’t seem that he felt a fear of NOT doing it.  The literature doesn’t look like my son.  But then we are often where the literature has not caught up to.  The more I think about it, the more obsessive and precise he was in toddlerhood.

The neurologist heard my concerns about the psychiatrist, reassured me, but also offered that if the psychiatrist offered up medication we were uncomfortable with–we could simply not go that route.  He made me feel worlds better about the fact that we had not jumped to medicate BigGuy in June when we got the ADHD diagnosis because he noted the difficulty in medicating bodies like BigGuy–how sensitive they are to small changes and how strong the response could be.  I felt validated.  I didn’t know what to do and I was all for ADHD medication but I was nervous about him having a potential seizure disorder and making it worse.  Hearing this was a huge relief.

The neurologist feels strongly that BigGuy has mitochondrial disorder and I filled out forms to get all of the genetic bloodwork from the geneticist in New Orleans that stopped responding to us on this matter.  “Kids with the developmental history I described don’t look like BigGuy at this age.”  Really?  Well maybe my family stumbled on all the right research and got all the right therapies and interventions in the time they needed them.  Maybe we are an example of what COULD be?  I filled out the form and will be happy to have someone else review them.

I made appointments from the parking lot.  Psychiatrist, MRI, EEG… then bloodwork for kidney function before the MRI… When I got home I made the follow-up for the immunologist and another 1-2 for check-ins.  Plus my own–which includes a cardiac stress test.  :/  Today I’m making another call to add fasting insulin, glucose and A1C to both my and BigGuy’s bloodwork and Lyme, cytomegalovirus, Epstein-Barr and strep titers to his lab work.

Then I had to tell my husband the results of the neurology visit and I found myself ugly crying.  I don’t know why.  Maybe it was relief.  Maybe it was feeling like the good things in my guy were finally going to win over his challenges–or at least had a chance.  Maybe it was fear that we were entering unchartered territory.  Maybe it was frustration that it took SO. LONG. to find the help we needed.  Maybe it was exhaustion as I was trying to figure out so many unknowns in our lives.

But I had a good, ugly cry in my car, alone.  Then I went and bought myself a treat–lunch, alone.  I walked through a home decorating store and picked things up to buy and then left them by the front of the store as I left because I really can’t spend that money right now.  Husbeau and I have one pair of sheets for our bed but we can just wash them and put them back on.  It doesn’t matter that it was a good deal if that $40 might buy us something we need later.

I’m anxious to get things moving.  Everything is happening over the next month.  I’m praying that the spring semester finds my sweet boy better able to focus and laugh with us instead of feeling the anxiety of always doing things wrong or forgetting things.  I’m praying that my husband finds work that helps our family stay in what should have been our last move related to this relocation. I’m praying that all of my own health evaluations come back clean.  And I’m praying Girly doesn’t get lost in it all.

Sometimes, the beauty of homeschooling is dealing with these things without the added pressure of school-imposed deadlines and friend drama on a daily basis or homework… People do it for sure; but I don’t think anyone could argue that having the luxury of dealing with all of it without those additional stressors is helpful both physically (have you seen the research on how stress affects your physical health?) and emotionally.

Much love to you all,

Mama signature orange JPG

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3 thoughts on “It’s been an exhausting autumn…

  1. My heart is with you. We’ve been dealing with severe anxiety and panic attacks with my almost 14 year old son. He is extremely sensitive, much like your son, so I’m trying everything I can find before considering drugs. We might have found something to make a real change. Time will tell. Hang in there.

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    1. I’ll keep your family in my thoughts. I have PTSD and I will say that focused meditation (the kind with a mantra or something specific to focus on) has been HUGELY helpful for anxiety and panic. Likewise, look up 4-7-8 breathing by Dr. Andrew Weil for use during a panic attack (you have to practice it, but it can even help with oncoming heart attacks). It might at least take the edges off.

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