A few days ago, someone asked me “are you not feeling well?” My response was bitter and critical – and I haven’t stopped thinking about it.

This is not an uncommon question – but sometimes it catches me off guard and I’m pretty sure my response can be a little curt.

It is not their fault. It’s a fair question and I know it’s meant to be compassionate. How would they know if I don’t tell them? How would they know if they don’t see it?

I reserve my public outings for times when pain is low, when I have a little energy, and when I’m not sick to my stomach – usually with the help of multiple medications. That’s what people see.

I’m sorry for hiding my sickness – for not letting you see the reality of my life, of our lives – because my husband and kids have been right here by my side and it has been hard on them too.

For those who don’t know – my sickness started 14 years ago when I was bitten by two ticks (in my back yard here in Red Bluff).

I didn’t know much about tick bites at the time – I just knew to watch for a bullseye rash – which never came.

A few days later, I came down with a severe respiratory infection. The antibiotics caused pain to increase and made my vision so blurry I couldn’t drive. We now know that’s called a herxheimer reaction – when the bacteria die, they secrete a toxin that makes a person very sick.

Over the next few years I had multiple other infections and bizarre symptoms doctor couldn’t figure out. I eventually found some supplements that helped quite a bit – but I continued to have mysterious bouts of sickness and pain and fatigue that couldn’t be explained.

7 years after the tick bite, I crashed – my kids call it “the day mom broke”.

Pain was so bad that I went to the ER – after two doses of dilaudid, which barely took the edge off the pain, they sent me home with pain meds and muscle relaxers.

Extreme pain and random symptoms continued – sending me to the ER over and over again and confining me to bed and a wheelchair.

Several months later, after seeing every doctor in town, I went to Stanford to see if they could figure it out.

They sent me to every specialist they have and to the pain clinic where I went every two weeks for IV lidocaine, which helped a ton at first but I became increasingly more reactive to it and eventually had to discontinue because it caused me to slur my words and have trouble comprehending my surroundings.

I eventually started looking at alternative medicine doctors and through advice of friends, I ended up with an LLMD (Lyme Disease specialist).

I was finally diagnosed with multiple tickborne illnesses and co-conditions – Lyme, babesia, bartonella, ehrlichiosis, postural orthodtatic tachycardia, mast cell activation syndrome, lead poisoning, mold toxicity, viral infections, severe digestive issues, hormone imbalance, the list goes on and on and on.

We have addressed some of the issues but new ones pop up and we keep peeling back the layers to find the treatments that will address issues or at least mask some of the symptoms. The diseases have done a ton of damage so some of my issues are permanent – such as thoracic outlet syndrome and a whole lot of destruction of the spine and joints.

Symptoms:

At one point we counted over 140 different symptoms. Not all at once, depending on the type of flare up, various ones come out at different times.

I won’t list them all here but I want to give you an idea of the seriousness of some of these issues.

For many years, more often than not I was in bed with meningitis and encephalitis type symptoms (extreme neck and head pain) along with severe low back pain, neuropathy that often felt like a blow torch over the top of my feet, nausea and vomiting for days on end, fatigue and weakness that I’m unable to explain, ice pick like pain that would stab all over my body (mostly in my head), which was a pain that would cause me to fall to my knees and curl up in the fetal position until it subsided.

My husband has lost a lot of sleep during nights when I would suddenly gasp for breath or stop breathing or when the pain is so bad I’d curl up crying. For several months last year, I couldn’t sleep because my GABA/glutamine cycle was off and my delta waves were confused. My brain thought I needed to wake up after 5 minutes of sleep. The effects that has on the body are endless – it wreaks havoc on the organs, and completely crashes the nervous, endocrine and digestive systems. That’s when God opened a door to return to a specialized center in Kansas – it took 3 weeks but they finally got my brain to sleep. I still have some bouts of insomnia, but I am certain if I hadn’t gone to Kansas, I would not be here today.

Most people don’t know that for several years, I couldn’t drive across town without throwing up. At one point I had my drivers license suspended because I was having episodes where I didn’t know where I was or where I was going. Cognitive issues are embarrassing and pretty difficult to maneuver so I tend to downplay the severity of it.

I’m always happy to talk about my condition if someone is truly interested in hearing about it – don’t be afraid to ask if you really want to know. But I think my stories of pain and sickness become pretty depressing rather quickly. And honestly, I want to hear about you – what you’ve been doing, how you are feeling and maybe talk a little about the positive things I’m able to do. Maybe this kind of conversation balances my world a little…it makes me feel normal, just for a bit.

Lately, I spend about 80% of life in bed. Some days I have a very low ability to function. Some days I have mental energy but I get very sick very quickly when I stand up – usually due to severe fatigue but I also get an increased heart rate, low blood pressure and shortness of breath.

Some days pain keeps me down. It’s not as severe as it was 7 years ago, but it is enough to force me into bed for several days. We’ve learned which tools (meds, oxygen, oils) we have on hand that keep me from having to go to the ER most of the time. But I still have episodes that scare us. I woke up a week or so ago in the middle of the night thinking I was having a heart attack – I had pain and tightness in my chest that radiated into my arm and jaw. It was a brief second or two so we quickly determined it wasn’t severe cardiac related – but it scared me more than you can imagine. Things like this have happened a lot. Less frequently now, but still, it’s scary for all of us.

I try to be active on social media. It makes me feel connected to the outside world. I’m able to take meds and push myself to get out for short spurts but I’m still pretty incapacitated most of the time.

I forced myself to attend an all day meeting recently. I pushed my adrenal glands to work overtime and I paid for it for several days with excess pain and weakness, and reduced energy and brain power. I was also off some of the meds that have been helping. Waiting for the refill of a compound prescriptions or pharmacies trying to get refill orders from the doctor or remedies that are being delayed delivery due to the chaos with the post office can be frustrating and limits my ability to get out of bed.

This is our life. We don’t know what to expect on any given day. It’s hard on me – it’s harder on my family. And none of it is visible to the outside world.

What I’m trying to say is that if you don’t hear from me, if I don’t blog for a while, if you don’t see me out in public, you can assume I’m in pretty bad shape.

Don’t take that to mean I don’t want to hear from you – I just may not have it in me to initiate connections at the moment. But I appreciate the love and care that comes through texts and posts and sometimes phone calls and visits.

And to those of you who may have gotten a snappy reply from asking a simple question about my health, I apologize. And I hope this helps explain that no, I don’t feel well, I never feel well, but I’m always excited to visit with friends and family – it’s a bit of life that helps me feel normal.