The Day My Finger Made An "L" (NDE Recovery Journal 11)

I am not my genes, or maybe I am + free book downloads

I am eight months out from visiting heaven. In some ways, it feels as fresh as eight weeks. In other ways, it seems like forever. I still don’t have a “real job”—and have been so busy medically that it’s seemed impossible. Of course, I am still writing posts, working on finishing book 3 in my fiction human trafficking series, and designing websites as much as I can.

For starters, I hate that this is somewhat of a medical post. I’ve never wanted to be “one of those people.” So, for months now, when people ask how I am doing, I have literally let them know that I am doing better and left it at that.

That was your warning - back out now while you can. :-) Unless you want to dive into the world of rare conditions. On that note, please do not UNSUBSCRIBE or unfollow if you do not want to read the recovery journal posts. :-) Just “X” out — the biblical posts will always be just around the corner.

On a great note, I am excited to attend Randy Kay’s Heaven Encounters Conference at the beginning of October. Is anyone else attending? I would love to connect there. You can find Randy’s blog, A Walk with Jesus, here.

On what feels like a very hard note, when Jesus told me to come back because there was still so much work to do, I thought that meant I had more of an impact still to make on other people.

It never dawned on me that He meant I had work to do on myself.

Ugh.

Since many of you have asked, here’s more information on my recovery than I’ve told anyone outside of my family.

Image by Christiane from Pixabay

The “L-Shaped” Finger and I Don’t Mean Loser

I ruptured a tendon in my finger over a year ago. And I did this by (wait for it), itching a rash on my leg. After a loud pop, my finger bent into an L shape. It wouldn’t straighten and was unable to heal. It decided to react to every single casting agent they tried (thank you, MCAS) and then finally protested via an impressive case of cellulitis. Dr. B, my primary doctor, had questions. Actually, he wasn’t my primary then—he was the one who had an available appointment because I was desperate—but I changed his position as soon as possible, because I remember the conversation well.

“There’s a reason it’s not healing.” He continued typing on the computer. “What am I missing? There’s something going on…”

Part of me already really liked a doctor who could admit that. Especially since most these days seem to be younger than me—including him.

“I don’t know. I’ve been googling.”

“Oh yeah? Me too. What did you come up with?”

(Jaw hanging and practically falling off the exam table.)

“Um, there are some conditions affecting collagen…”

“There sure are. Hey, have you heard of EDS?”

“Yeah. My sister in law has it. She almost died from MCAS and mold. Darn. I was hoping you would tell me I was off my rocker.”

“Definitely not that. I know that you know your body best of all. This has been a lifetime of issues for you.”

(What? A doctor who trusts my experience in my own skin?)

“I’m not wacko?” I grinned. I’m glad that, although sometimes I need time to adjust to things, my humor eventually arises—or my sarcasm, anyway.

“No. Will you let me help you figure this out?”

Um. YES. Then I sighed. I honestly didn’t think there would be an answer—after all, there had never been one before. But I would try to help Dr. B. figure me out. Maybe after a few months, he would give up like all the rest.

Male Doctors (no offense to any of you who are one or love one)

Did I mention I don’t usually see male doctors? OK, never, unless I need a specialist, and the only ones are of that variety. If you were to obtain my medical records, you would see “domestic abuse” listed on my calamities (err, diagnoses). Dr. B. hasn’t touched me hardly at all, he sends me to others for those specific exams. I’m good with that. But recently, when forced to start thinking/talking about potentially filing for disability after he recommended more Leave from “work” (the second doctor to do so), I completely lost it emotionally. He listened. And then he said (good for him) when I kept apologizing, “It’s OK. This is a safe place. You can do that here.” And handed me a box of Kleenex.

Whew. I straightened myself up. That was the last bout of tears in a professional setting—at least I hope so!

He ran the Beighton Score and Brighton Scale test on me, and together with my symptoms and issues, felt pretty sure I have hEDS, the hypermobile kind. And so this post doesn’t get to twenty pages, you can learn more about that here. No, it does not help Ehlers-Danlos or other connective tissue folks to ingest more collagen. Their funny bodies won’t process and use it correctly.

There are thirteen different types of Ehlers-Danlos, with vEDS (vascular) being the most dangerous. People with vEDS, which can cause organ ruptures and heart aneurysms, often die early. Obviously, I’m still here, so that must not be it!

But stay tuned, those results were only preliminary.

Organs on the Run

Three months ago, some of my organs decided to come out of their restricted areas and even occasionally got sneaky and pushed outside of my body. Gross, huh. God has provided some healing with a lot of work, and they are now mostly staying in. With suspected EDS, my research said (and three doctors agreed) to avoid surgery if at all possible, because it has a high probability of failure and/or making it worse in the future.

So, I am exercising by walking as much as my body allows, and I am in week nine of physical therapy. The first four weeks of physical therapy, which were meant to strengthen my core and, therefore, my back (a low-impact car accident over twenty years ago damaged three discs—yes, you read that right), actually caused the organ-falling issue above. Yeah, that’s how I roll. :-( I got stubborn, or desperate, and headed back to PT regardless. In a you-caused-this-let’s-fix-it sort of way, but I was nice.

The PT doctor actually said, “What do you want me to do?” He might as well have said, “Get out.” LOL.

But a lawsuit was not even in my mind. I wanted to get better. “There has got to be some type of activity that will help me that I can keep working on, doctor. Please.”

So he did some research and gave me a few assignments that we worked on together. I mean, literally, side-stepping with him in front of me doing the same looked much like a dance. And I don’t dance. Not willingly, anyway.

But then it was goodbye, with a recommendation to find pelvic floor therapy instead.

I got a high-five on the way out.

Kidneys Tire of Holding Everyone Else in Line

I learned quickly which activities cause more organ falls and which ones don’t. I was fortunate to obtain a new great PT doctor (commuting required) who listens to me, and we keep adjusting each time I go backward, which, so far in five weeks, has happened twice. Obviously, I’m complicated, and I’m sure she has better things to do. But she hasn’t given up on me, and while we’re at it, I’m helping to train an intern on rare cases, so that’s cool.

My usual bloodwork during my physical in January showed struggling kidneys. Three more bloodwork tests showed a continued decline. Dr. B. has been careful with his language, apparently, and encouraging. But when I went in for a more urgent infection a couple of weeks ago, a well-meaning PA decided to lay it all out and tell me I have kidney disease/CKD.

Ouch. I frowned. “They will improve. I have that on good authority…what did you say your name was? Oh, wait, you never introduced yourself.”

He blushed. “Sorry, ma’am. Derek. ¹ You need to see the renal doctor.”

“I tried. They told me I’m not a priority. And if you take bloodwork today, you’ll see improvement.”

He didn’t, of course. I got my antibiotic prescription and left.

I did follow up with Dr. B., of course. Last week's bloodwork shows function back into the low-normal zone. The lines are GREEN. Thank you, Jesus.

Julie Decides Enough is Enough

I have lost 14 pounds (still a long way to go), moved most of my medications and supplements to every other day (did you know many prescriptions have what they call a “half-life” of at least a couple of days?)², take a renal supplement, avoid alcohol (and NSAIDS as much as possible), and walk at least five days a week. I’m up to 6-7 miles a week now. In midlife, and after endometriosis and hysterectomy-induced menopause, weight is so much harder to shed, and it just might be more stubborn than I am.

There have been a lot of ups and downs, but I must continue to work at it and stay encouraged. So…..WOOHOO! I have logged my calories for over 70 days straight (a record) and will focus on that fat loss. Keep at it, Jules.

Due to my pollen allergies and anaphylaxis (which one session you’ve heard all about), I have been unable to tolerate fruits and vegetables for the last couple of years. But the immunology allergy shots seem to be helping there, and I have added much back to my diet, including specifically kidney-friendly fruits and veggies. That’s why I couldn’t resist the image of mutated apples. I’m so grateful for the ability to eat the nutritional “medicine” that God designed specifically for our health once again.

God has told me several times, “You are going to be OK.” This has helped me not to worry so much.

However, the time had come for some genetic testing.

I Am Not My Genes, Or Am I?

I wanted to rule out the worst-case scenario of EDS and also see what else made up Julie. Due to complications of an insurance company that now seems weary of paying out for me, and I get that, it took two doctors, a lot of time, and finally an appointment with a geneticist to get what I needed.

I have variants in COL11A2, a gene that indicates potential Stickler's Syndrome, a connective tissue disorder similar to EDS/Ehlers-Danlos. I also have limitations in COL11A1 and COL11A2, two other Stickler’s genes. I also have limitations in COL3A1, a vEDS gene.

I have limitations in two others as well, indicating the tendency to gather calcium deposits, and one that indicates potential learning issues, ADHD, and autism.

I just got off the phone with the genetic counselor. It was helpful. These genes are recessive, and the tests are inconclusive, not because of me or my genes, but because they just do not have enough information yet. She feels the results plus medical history are a strong argument for hEDS, which does not yet have a gene to test. One good thing: They update you! That is good news. As they advance and genes become more conclusive, if you have had testing, they will send communication about it.

Of course, I am reading up on all of those genes, and some information about vEDS stops me short. Google says, Right-sided heart failure and lung collapse can be associated with Vascular Ehlers-Danlos Syndrome (vEDS) due to increased risk of arterial issues and lung complications. In vEDS, lung collapse, or pneumothorax, can occur due to ruptured lung blebs or other conditions that impact the integrity of the lungs.

Why did that sound so familiar? Oh yeah, my older brother died during a bout with pneumonia five years ago. The right side of his heart failed (my grandma also had that happen and lived for many more years), and then his lung collapsed. :-( Shoot! I wasn’t trying to be the detective in the family, even though I like to write suspense. Yeah, time to call my kids and other family members. And of course, before they read it here.

OK, I will try to think positively. Genes are, of course, also what make up our positive traits. Right? Without them, I wouldn’t be Julie! And I kind of like her.

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P.S. - I made a new page with all the links to my Near-Death Recovery Journal posts since some of you prefer those posts, and they can be hard to find. You can find it here.

P.P.S- I saw this post today from Christopher Cook and found it helpful. Although I think naming our “things” and working on them is important (let’s not discount that), it’s also important that we don’t stay there and make them our identity when our identity is in Christ alone. Read it here.

P.P.P.S- Did you SEE the American Idol on Easter Sunday? I recorded it and watched it later in three sessions. I’m glad I took time to digest it. I just cried. Guests included Brandon Lake, Jellyroll, and CeCe Winans. Carrie Underwood also did an incredible rendition of “How Great Thou Art”. How beautiful it was to see these incredible singers, many of them praising Jesus. And to know that with the impact Idol has, over 4 million people heard the gospel from that stage.

1. Derek’s real name is not Derek. You know what I mean.

2. Of course, do not ever change your prescription medication schedule without consulting your doctor first.