Once again, this post is largely for me. I know I am going to want to remember these events, and Bitey Dog serves as my journal. Read only if you need a sleep aid.

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Weeks ago I had a bump on my head that brought fever, joint pain, swelling and a bright red insanely itchy rash that eventually covered 13% of my body (but thankfully the redness has faded.). For every one of these symptoms it is recommended that you call your doctor. I tried. I tried for three weeks, but the office refused to give me an appointment. When I called and asked if there were any appointments available that day, they told me to go to a practice 15 miles away- maybe they would take me as a walk in. When I asked if I could schedule an appointment for the next day, I was told to “Call first thing in the morning, bright and early at 8:00 a.m. sharp, and maybe you can get an appointment for that day.” When I asked to schedule for the following day, they said I should “Call first thing in the morning, bright and early at 8:00 a.m. sharp, and maybe you can get an appointment for that day.” On a different occasion I was told to go to the emergency room if I couldn’t breathe. Well, I could obviously breathe: I was talking to them. On another occasion I was told that the rash I had “was likely a granuloma because, you know, you have a history of granuloma on your face.” 🙄

So, I kept soldiering on until last weekend when family was in town. I was trying to socialize, but my facial deformities were so bad that family wanted to know if I were alright. No, actually I wasn’t.

Not only was my face drooping and paralyzed but my tongue was numb, my taste was screwed up, and I could not open or close my mouth. It was so bad that the next day I barged into the doctor’s office without an appointment and demanded to see someone saying that I thought I’d had a stroke. Someone showed up in seconds and said “What are you doing here? You should be at the hospital.” I wanted to know if there were anything that imitated a stroke that I might have. The only thing the doctor could come up with was to ask me if I had any tick bites. No, no tick bites. “Then get to the ER!’

So, off to the ER went Bitey Mom. When I got to the check in, they asked what was wrong, and I told them my doctor thought I’d had a stroke. “Stroke!” they yelled into their walkie-talkies, and I was quickly whisked away. After doing blood tests, pee tests, heart tests, reflex tests and a CAT scan, the ER doctor determined that I hadn’t had a stroke but had Bell’s Palsy and a whopping bad case of TMJ. I was surprised because I had been told I had Bell’s Palsy before, but this felt different enough that I didn’t recognize it.

To my surprise and joy, the ER doc actually listened when I told her about what had been going on with me. She even asked questions. After she told me I had BP, she said she thought it was triggered by a virus and gave me some comically oversized anti-virals.

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Even horses won’t take these.

Then the doctor asked me if I have any family history with autoimmune diseases and she listened when I said “yes”. (At least four doctors brushed me off when I told them about my family history.). She said that from the symptoms I have been having, it looks like I have lupus. I told her about being tested for MS last year because of how much my symptoms resembled MS. The last doctor I went to said that it looks like what I have is MS but pre-lesion. The ER doc reassured me that I don’t have any lesions.

Shortly after my ER visit I could feel that the Bell’s Palsy was not going to stay on one side. By the end of the day it had encompassed the other side of my face as well.

I feel really self-conscious because I can’t smile. My Resting Bitch Face is somewhere between pained and angry. I tried to engage Toby in some play when I got home from the hospital, but he misunderstood my facial expression (or lack thereof) and growled at me. I make sure to use a super cheerful voice and positive body language when I work with him now.

The Many Faces of Bilateral Neuralgia

I hadn’t realized until my ER visit that the nerves that controls the face and the trigeminal nerves are so close together. I have a lot of swelling in that area of my head that it has affected both. (As well as my ears. I am having hearing problems too.)For a couple weeks now I haven’t been able to close my mouth to chew. I was just swallowing chunks of food, but that led to stomach upset. Eventually I gave up and started pureeing my food. It looks like meal time at the old folks home, but it sure feels good to eat again.

I asked the ER doctor about the awful pain in my head (scalp) that feels like I have been badly beaten as well as the occipital neuralgia, and she told me that is likely due to the lupus. Out of curiosity I looked up how long lupus flares last, and most descriptions say a couple of days. What?! This has been going on over five weeks. I am exhausted because I can’t stand to put my head on a pillow. My neck hurts too much for me to sleep more than three hours. If this is what lupus is like for me, then it is going to be a difficult future.

Next I’m supposed to see a rheumatologist. I made a bunch of calls and ended up with an appointment for Dec 21. Yeah, something tells me that isn’t going to happen. My neighbor is encouraging me to do a televisit to see if I can talk to someone sooner. Evidently I look really bad, and she is worried about me. I’m going to see what I can do about that on Monday.

I don’t like this mommy.

She looks angry and is too tired to

spoil me the way I deserve.