It has been weeks since I’ve updated my story and I left with a cliff hanger.

The good news is that I’m back.

The bad news is that I’m not going to wrap up the story tonight. I will make every effort to do so tomorrow or Monday.

My brain is so much clearer that I’ve been busy working on a number of things.

Pain levels are terrible. Fatigue/achiness continue. However, having most of my cognition back helps me deal with those things with more grace and hope.

More to come soon….

~ Mark Twain

Yesterday was a day that can’t be explained while making it sound true. You have my solemn oath that everything here is 100% and total truth. I’ll refrain from sarcasm so that there can be no doubt if something is playful or true. It’s all true.

I can’t recall offhand if I’ve mentioned the surgery I’ll be mentioning….

My son has had an interest in medicine since seeing his first episode of House. He became fascinated with research that doctors don’t always have time or funds to work through.

Two examples….

1. We had a beautiful, plucky, über friendly cat named Henry. He was a long haired cat with a tuxedo pattern. Green eyes. Everyone who met him – even people who didn’t typically like cats – loved Henry. He developed what seemed to be seasonal allergies some years ago and could sneeze so hard his snot flew for feet. (Again, 100% true.) As the years passed, his episodes lasted longer, he needed more steroids, his breathing rattled. He was finally diagnosed with pneumonia. My son said, “Nope. That’s not what he has. Something is wrong with the general function of his lungs and I think he’s allergic to mold.” We took Henry to a highly recommended vet a very long drive away. She ran extensive expensive tests. My son told the vet, in his pragmatic style: He has fungal pneumonia. She, like our local vet, dismissed him outright, and sent us home with antibiotics and steroids (and a bill for over $1,000). My son was furious. In July 2018, we had to let Henry go. He could breathe in, but not out. It was killing him and there was no cure by that point. If you research “fungal pneumonia” you’ll find that this is what Henry had, it could have been treated, and he could have lived many more years. We miss Henry every single day, and to think that my son offered up a correct diagnosis, it’s heartbreaking.

2. As my health degraded at an increased rate, my husband and son worried more. So, my son started researching again. It didn’t take him long to say that I had vertebrae disintegrating and pressing on at least one spinal nerve. He told me that, several times, but I was too sick to take in the info. I had an MRI and it showed no pressure on the spinal cord at all. My son mentioned his theory to my neurologist, but the radiologist, neurologist, and neurosurgeon all said: no pressure on spinal cord. When I had surgery on June 5th last year it took a while longer than expected because it took a long time to intubate me, and because the collapsed vertebrae were pressing on the spinal cord.

There have been other smaller examples of his gift, but these are the most impressive.

It should be noted that throughout this time my son was 18-20 and had barely managed to finish high school because of math and science grades.

Given where I am today: much improved, but still battling cognitive issues, fatigue, weakness, and radiating pain, S. (my son), decided it was time to do as full a medical history on me as he could. I gave him full access to my medical records and answered questions as they came up. My husband and I used to IM each other when we had office jobs so I was able to do some digging in that history to help S’s timeline and his pharmaceutical history.

Here are a couple of things I’ve never been told before that he mapped out:

SSRI’s don’t work for me. I need SNRI’s. (When I think of how many SSRI’s I’ve tried and not felt better, I’d really like to have a long conversation with my last psychiatrist, who treated me for roughly a decade. S. called him “Captain Prescription Pad” and never trusted him – even when he was eight or nine years old. I have a different psychiatrist now… one recommended by S.)

Every health issue I can remember got its own page on a legal pad with details. As I mentioned, there was as full a pharmaceutical workup as he could do without my psych records. To call this study thorough, thoughtful, and accurate would be a compliment for a true M.D., but to see it created by S. was – I don’t want to say “surprising” because he’s shown this gift for a long time. Maybe the better words is “impressive.” After a whole lot of work, he found the source of my ME/CFS. My hypothalamus is overactive.

Basically, my unresolved PTSD has caused my hypothalamus to continually flood my nervous system with cortisol and norepinephrine. This is why NSRI’S work for me while SSRI’s don’t. The pressure on the nerves in my spine prior to surgery likely aggravated this further.

If you read medical journals deeply, you’ll see where scientists are finding this link and doing further testing.

I’ve run out of steam now…. It’s been a long day. I’ll finish the story tomorrow.

I’ll say simply, I have hope now.

Living in Atlanta means brutal summers. It used to be that July & August were brutal. Now, many summers go from June through September. This one has started in May. The forecast for the foreseeable future looks like this:

We went out for lunch and the bookstore and I am queasy from pain. It also seems like my last steroid injection is wearing off.

I’ve cancelled a breakfast for tomorrow that I was really looking forward to.

My hope is that I can substitute that for lots of good writing. I have a new notebook waiting for a very exciting project.

I will be calling my PCP tomorrow. I have to get some pain relief.

My calendar is not showing past events so I’m not sure if it’s been a full month since my last SI joint injection….

Today’s FB memories took me back to one year ago today:

My last 45 minutes have been this. This is not funny. This is not in any way humorous. This is the brain storm I am living with right now. Or at least a tiny slice of it. 8 days to surgery.

*stands up*

*almost falls down.*

*goes toward bedroom….*

Self: See? Lazy. You’re just lazy. You’re…. wait. What? I’m what?

Self: Sigh. Can’t get the thought back.

*gets pajamas and starts up shower*

*gets lightheaded stepping into the shower stall* (Note: not a tub, just stall.)

*grabs onto door and wall*

*Successfully shower, leaning for a few moments on the nook where my shampoo and body wash is.*

(Now too tired for much internal monologue.)

*Dress, etc.*

*Walk like Otis Campbell down the hall and sit back on the couch.*

Self: You didn’t get any water. Idiot. Wait, huh, what was I going to get? Something…. Something from the… the left… What day is it? It’s….. Thursday. Yes, yes, Thursday. Because I handed bills over to accounting today. ………. Wait. No. That was yesterday? I think? I really need to write this down…… Wait, write what down? This. Stephanie. This. This is NOT YOU. Journal it so you know…………….. know what? I don’t know. Birthdays, I think….. or…… I don’t……. [total silence in my head] Ummmm. I don’t know. Maybe a lake? Or… We need to get maintenance on…. my…… ummmmm… my…. my…… oh! Car. Len did that when I was in Portland. So…. oh. Water.

So, I’m better than that by far.

I’m going to make an effort to appreciate that. I was blessed with a great surgeon and a great sleep study.

My son has discovered the root of ME/CFS. No, I’m not kidding. My 20-year-old, on-his-second-gap-year kid is as stubborn as both of his parents put together, and is at least AS smart, if not smarter, than both of his parents put together. He also has a very elastic brain, which allows him to pull together concepts and realities that his middle-aged parents can’t get to. He’s a gifted diagnostician and has the perfect bedside manner. He is gentle and kind and knowledgeable.

Here’s an example of why I trust him completely:

As my pile of symptoms built and increased in ferocity in 2017 and early 2018, he started researching what was going on. He was scared. (We like each other a little.) He determined that some of my symptoms could very likely be caused by pressure on nerves in my cervical spine. He declared that as a Part I diagnosis.

I had an MRI in May 2018 that showed disc degeneration, but no pressure on the nerves of the spinal cord. My heart broke. As absurd as it sounds, I had just known that my spine was making me sick.

I don’t remember ever having pain in my neck, but I’m not sure if that’s because of my ridiculous memory or because of a misunderstanding with the doctors.

At any rate, I jumped on the chance to have ACDF surgery. (In fact, a year ago today was my long pre-op day.) My heart was still broken from the diagnosis, but I would have let anybody do anything if there was a tenth of a percent chance something might get better.

When my neurosurgeon got in there, guess what? Pressure on the spinal cord, pressure on nerves, that had not shown up on the MRI.

So, my kiddo’s credentials may not be on a diploma, but his gift for diagnosis is as real as any piece of paper. I could give a dozen other examples, but this was the biggest one. He caught something the radiologist, neurologist, and neurosurgeon had missed.

Now, in the past few weeks, he has dug deep into my medical records and current symptoms and current medications, and has a straight line to what’s going on. I had him write it up and save it on the cloud so that his theory is date stamped.

I’m going to try visiting my neurologist before my scheduled September appointment to ask for tests the kiddo and I have determined would best show the bright spots we’re looking for.

As I’ve said before, I’ve been on my CPAP (BiPAP) since December 4th. 170 days. I have missed two days…. (forgot a part when we went to California at the beginning of May – had it shipped ASAP) and my improvement is not what was promised. The CPAP was supposed to fix everything, and while it has helped many things, I’m far from well.

I’m setting aside research now. Why reinvent my son’s wheel?

So, I will shift the focus here to day to day functioning with this miserable disease until I can get my neurologist and, hopefully, a neuroscientist to give me a PET scan and an MRI with contrast.

I just completed my cognitive exercises for the day. I did four, instead of my usual three.

The first had 12 pictures of types of pasta. I missed three. When checking the answers I saw that I had never seen any of those three. So, I’m okay with that.

The second was to name as many kinds of cheese as possible in one minute. Based on the design of the puzzle, you are to shoot for 13. I had nine. Had the puzzle not been timed, I would have gotten to 13.

The next was not timed. There were ten hints where the answer contained the word “grand.” I missed one outright, but I call an audible on number two.

New York City transportation center _____________

I said “Grand Central Station.” The correct answer is “Grand Central Terminal.”

On Alphabet Trivia I struggled with three out of 12:

1) Who are the three US presidents whose last names begin with A? I got the two Adams’, but, gun to my head, I would have never, at my brightest, figured out Chester A. Arthur.

2) This question asked for two punctuation marks that begin with the letter A. I changed that to “parts of speech” in my head and blew the whole thing.

3) The last issue came with naming 5 state capitols that begin with A. I got 2. Ugh. Then it got worse…. I had forgotten ATLANTA.

Ugh.

I started my system of sleeping until my body woke me up this past Sunday morning. I woke up just before 7:30.

On Monday I woke up at about 7:15.

Today I slept until 9:00!

I think my body now knows that it can relax and handle the sleep deficit.

As I said the other day, I’m not a fan of sleeping in. I feel like I’ve lost a whole day. But, clearly, this is something my body is craving.

I’ll keep listening.

In the meantime, my twenty-year-old son, apparently with the help of one of our cats, is studying to figure out what is wrong with me.

I have felt better today. I wrote about a thousand words on an op ed piece. I showered. I read a bit of A Game of Thrones. (I’ve read it before but it’s been a while. My husband suggested that I read in a happy medium kind of way by re-reading something.) My brain feels clearer and my glands are not as swollen. Pain is still bad, but this is a much better day.

I finally found some solid information from Harvard regarding the sleep deficit that can exist after years of suffering with sleep apnea. The suggestion was to turn off your alarm and sleep until you wake up naturally. Do this for one to two weeks and you should be waking up earlier and feeling more rested. Feeling more rested can lead to cognitive function improvement. Will it fix the pain and the swollen glands? I don’t know.

From my early twenties on I always had edema in my feet and ankles. The BiPap treatment fixed that in days. DAYS!!! So, could catching up on more sleep fix other seemingly totally unrelated issues? Why not?

Vacation starts tomorrow morning. I really hate sleeping in. It feels like such a waste, but if this gets me back in my feet, it’s nothing but gain.

I picked up this book at B&N to give myself a structured way to exercise my brain every day. Some of the games suggest timing limits.

I did three games. The first allowed two minutes. It took me 3:17. The second was not timed. The third allowed seven minutes. At 9:20 I threw in the towel on naming four countries that have four letter names. I had Cuba, Peru, and India (which has five letters). Len helped me with a replacement for India and a fourth by rattling off Iran, Iraq, Chad… at which point I stopped him.

I didn’t realize until I was typing this up that India was incorrect.

Could be worse…. Could definitely be better.

This is my journal entry from this morning. Granted, my medication had not fully kicked in, but you can still see why I can’t stop pushing myself and researching the issue.

(Please comment, follow, and share. The Internet is an amazing place to connect with people with the same issues and/or scientists and doctors. A social media share would be so appreciated.)