As some of you might recall from the post I made a year ago my health has been in a state of upheaval. Last year it presented as a kind of mental breakdown with constant anxiety, extreme depression and frequent panic attacks. While all this was happening, I was told I probably had a brain tumor. Later in the year, an MRI and blood test suggested I did not, in fact, have a brain tumor.
Alas, that didn’t mean there was nothing wrong with me. There was. And is.
Despite testing negatively for a tick-borne disease called Bartonella (that you can also get from cat and dog bites and scratches—I think I got it from wrestling with Kenobi), my symptoms suggested that I had it. While I was being treated for it naturally, using herbs and supplements that usually cure Bartonella, it was also largely ignored because many of the symptoms overlapped with having a brain tumor, including panic attacks, which persisted throughout the year and into the summer.
Flash forward to September. Toward the end of the month, about a week before Robinsonfest, I started getting neuropathic symptoms. At first it felt like severe goosebumps on my thighs, but over the course of a few days, it progressed up my back and onto my head. By the time Robinsonfest happened, it was distracting, but not yet debilitating. That happened a few days after Robinsonfest, when my nerves became so out of whack that I couldn’t stand to be touched. I couldn’t do much more than sit in bed. Even something as simple as a shower became horribly painful.
What is neuropathy pain? Before this, I had no reference for it. No understanding that a body could feel this way. When it first got bad, I was sure I was dying of something incurable because I had no frame of reference for the kind of pain I was experiencing. There’s the goose bump feeling, which happens all over. Pins and needles, like when a limb falls asleep, or you smack your funny bone. The non-sun sunburn. At times it felt like I’d spent the day in the sun, but my skin showed no redness (except on my face and ears). To contrast that, some days my skin would feel like it had been covered in ice…while still being warm to the touch. Jolts of pain would surge up from my heels, through my legs and into my gut in pulses. My fingers and hands would buzz when I touched things. My body felt nauseous—not just my stomach—everything. It wasn’t like my muscles or bones, it felt deeper than that…because nothing was actually in pain. My nerves were just simulating it. I’d sometimes get panic attacks just from standing up. My muscles felt like they were frozen There’s a slew of other symptoms, too many to list, but the end result was that I was all but useless for most of October.
The Bartonella, happy to screw with my neurology for two years, had moved to my nervous system, and now had my doctor’s full attention. I started on two antibiotics designed to root out diseases like this, which hide within the cells, and make them hard to get rid of. In total, I take about 15 different pills to treat this crap. That started in mid-October and will likely continue for a few more months. It can take even longer to be rid of this stuff, but hopefully it won’t take that long for me.
I still have to wait for the symptoms to fade for a few hours before braving a shower, but the symptoms, both neuropathic and neurologic are lessening. Some days are worse than others, but overall progress is being made. I’m back to writing a chapter a day, and am feeling hopeful that over the winter, I’ll be rid of the neuropathy issues and the neurologic symptoms that have plagued me for the last few years.
On the down side, a recent blood test once again suggests the presence of a tumor. BUT, with Bartonella affecting every single system in the body, including the liver, which produces the hormone (IGF-1) that suggests a pituitary gland tumor, it’s possible that it could be the cause for the extra IGF-1. So, now that is on the back burner until the Bartonella is cleared up. Hopefully the IGF-1 will drop to normal, and I can stop being a vegan. Fun fact: animal protein increases IGF-1, which is fine if your numbers are average, or you’re lifting weights, but when you have too much it can make your body grow in bad ways, like cancer. That’s why people with cancer go on vegan diets—to lower IGF-1 and remove the cancer fuel.
Why am I telling you my medical woes, again?
Because I’m a whiny little biotch? Maybe.
But what triggered this post is that I sat in my office chair to write today, for the first time in a long time (I’ve been writing in bed, or in a recliner) and noticed all the e-mails and messages I’ve failed to respond to over the past two months. I like to reply to all correspondence, but have failed to manage that recently. I’ve tried, but a lot have slipped through. So, if you have sent me a message and I’ve failed to respond, this is why. Sorry!
If you’re one of the people I haven’t responded to, feel free to resend your e-mail, or send a reminder. I won’t think you’re being pushy. You have my permission.
Since last year’s post, I’ve received a ton of support and am grateful for it. You all definitely made me feel loved and supported, which is helpful since I sit in a room, by myself, nearly all the time. While I’ve had to cut back on the number of books I publish (by about 50%), there will still be a good 5–6 novels over the next 12 months, so I’m slowed down, but still faster than most. 🙂 And who knows what will happen when I feel better and return to my usual 2-chapters-a-day pace.
Then again, maybe I’ll stay on my current pace and try to live a little bit more. That sounds good.
Speaking of novels, my next release, FORBIDDEN ISLAND, will be out on December 5th! I’ll be posting the first few chapters in the next week, so keep your eyes open for it.
Thanks to all of you for the support, and for putting up with my medical woes. One of the things I’ve learned over the past year is that everyone has something going on. It’s part of being human. Not everyone posts about it online, though, and I normally wouldn’t if I didn’t feel like I was letting people down. So, whatever you’re dealing with, whether it be medical, emotional, or personal, I hope you find the help you need, and stay on this storytelling journey with me!
So sorry you are having health issues. I hear you about the neuropathy pain though. After having surgery almost five years ago for cancer, and lymph nodes removed, my left arm, well hell, left and right arms have slight neuropathy from the nerves being cut for the surgery. I had a small cancerous tumor removed from left breast and 2 benign ones that were on the right side removed, for a total of 3 small tumors removed. Even now I get the falling asleep feeling on top portion of left and right arm. It is numb where the lymph nodes were removed and where the surgical incisions were, same thing. It sucks. Sometimes my arms feel like they are on fire…anyhow, I can relate to how that part feels. I hope everything works it way back to you being healthy and able to get back to your normal lifestyle. Take care.
For ever and always, in your corner! Take care of yourself! With so much love and affection, Ms Becki
Hang in there! Good vibes coming your way!
I heart you.
Good luck Jeremy. Glad you were able to pin down the culprit!
Will be praying for your speedy recovery
Health and family are number 1 good sir! Take care of them and everything else will fall into place. We, your rabid readers, will be sending good thoughts your way!
Wish you and your family all the best
I am glad that it seems there is light for you at the end of this medical mystery tour. I’ve been sick off and on all my life, and am now on permanent disability from MS, Sjogren’s and Fibro, as well as anxiety and depression. I’ve learned a lot about myself, esp. this past year as I have been sorting things out. I figured out I’ve been anxious my whole life, been bullied, and now, am stuck with so much pain, year after year that I just accepted that this is my life. Your attacking what’s going on, and never giving in and just accepting it has been an inspiration to me. So now, at 60, I start down the paths that have outcomes, like a hip replacement. Reading about your troubles is not whiny, it’s helpful to know that others struggle at times too. I for one am glad it’s not a tumor, and is instead a nasty illness, but curable. Take care of yourself. Slow down and smell the ____. A fan since the beginning.
Get well brother, enjoy the novels immensely!!
My husband and I have been dealing with my husband’s cancer for nearly two years. He has nerve damage from radation treatments and chemotherapy. He can’t feel the right side of his face and mouth his mouth produces a thick substance that makes eating impossible. To get to the point of this note your health problems has helped him feel he is not the only one having problems with nerve pain and encouraged him to kept fighting. Thank you for sharing. I hope your problems will get better soon. God bless we’ll be praying for you.
Jeremy- so sorry to hear you are having to go through all this. Hoping your doctor’s have you on the right path so you can be well soon. Always a fan!
I hope everything will get better, you will be in my prayers