Tag Archives: House Stuff

So... yeah. I woke up yesterday morning with an odd numbness on the right side of my tongue and my right upper lip. But had waaayyy too much to do, being in the middle of packing to move (movers come tomorrow, and we’re way behind on packing) so I went about my errands after thinking “hmm, that’s odd”.

By noon, the numbness had spread to most of the right side of my mouth, my right cheek had started twitching, and my right eye had started burning like it was dry. Really dry, like Sahara dry.

I mentally said several VERY vulgar words and took myself off to the bathroom mirror with my phone camera to do some stroke assessments. Effects limited to the face. Ok, that’s good. No problems speaking, and the fact that I remember all of the stroke assessment means my cognition is probably fine. Probably no need for 911. Did the rest of the detailed assessment and I was 99.9% certain I was dealing with Bell’s Palsy and not a stroke or anything else, really.

I’m going to interject some nurse education stuff here. What I did was damned stupid and you, Gentle Reader, should NEVER, EVER, EVER, do what I did. If you or anyone you love develops facial weakness or numbness on one side, you should hasten to an emergency department and let them determine what’s going on. I’m not a doctor, I am not trained or equipped to diagnose anyone, including myself. That we nurses and other medical professionals do it with ourselves and our families is well known, but it doesn’t make it smart. I’m not just saying this to cover my legal butt here. I’d feel horrible if anyone who read this decided they were having similar symptoms and postponed care only to find out they were having a stroke instead. When it is a stroke, time is brain. Let the professionals figure out what’s going on, don’t waste any time.

Anyway, I didn’t delay care for long, because even though I was pretty certain it wasn’t a stroke, it’s imperative with Bell’s Palsy to get steroids started as soon as possible, so I got into my doctor’s office quickly, got my diagnosis confirmed by the doc taking walk-ins (love my doctor’s office), and got a shot of steroids in my butt. I’ll be on a high dose of steroids for a week, tapering off — hello, jitters from hell — and with any luck the facial paralysis (which is MUCH WORSE this morning) will start reversing soon and be over in a few weeks.

I *so* didn’t need this right now. Which of course, is why it hit right now. The medical literature insists that Bell’s is not caused by stress. However, the main culprit in Bell’s is a virus called herpes simplex virus 1 (HSV1). This is the virus that causes fever blisters on the mouth (typically), and yes, its close sibling HSV2 is the dreaded genital herpes. You can get HSV2 on the mouth and HSV1 genitally as well, but they tend to prefer their normal sites of infection. I have horrible fever blister outbreaks, my primary doc has never seen anything like mine. It’s been confirmed to be HSV1, so it’s most likely the cause of my Bell’s.

My fever blister outbreaks have specific triggers, and while stress doesn’t usually cause it all on its own, like so many other chronic conditions like my autoimmune ones, stress primes the pump and makes flares or outbreaks that much more likely. So the stress of the move very likely primed the pump and my lovely reservoir of HSV1 virii decided to jump from one nerve bundle to another and play havoc with my life this week. I developed an allergy to the medication they treat HSV with, so all we can do is hit it with the steroids to take out the inflammation.

Oh, and having migraine disorder also puts one at higher risk of Bell’s Palsy as well. Joy.

Once one has had an episode of Bell’s, they are also more likely to have repeat episodes. So I have that to look forward to.

Life as a Spoonie is often one surprise like this after another. All I can do is roll with it and try to keep a positive attitude. After all, Bell’s Palsy is a temporary and treatable condition. It’s annoying as all hell, but it’s not debilitating.

So for all my Spoonies out there, I hope you’re able to find at least one positive in your life to focus on today.

I'm coming up on a half-century on this planet, and have moved several times as an adult. Each time, I end up pressed for time, and just throw everything into boxes and swear I’m going to sort through everything and de-clutter, reduce my stuff before I move again. It never happens, because the next time I move, the same thing happens.

This time, I have plenty of advance notice and am determined to downsize, de-clutter, “Kondo”, and otherwise reduce my belongings to just what I want to carry with us to the next place. Minimalism, to a degree. It sounds like Heaven to my Spoonie heart - less stuff to manage, organize, clean, maintain. Fewer spoons needed for the maintenance of my space and stuff. Yay, right?

One problem. Getting from here to there takes a lot of spoons. In the pre-chronic illness days, I’d make like Marie Kondo over a long weekend with a few nights short of sleep and be done. Not an option now. I can clean/sort/pack/paint/whatever for about 30-45 minutes at a time. Then I have to rest for about the same amount of time. I can only do this about 5, maybe 6 times a day on the weekend. That’s not nearly enough time to get through all the things we need to get done in preparation to sell our house, de-clutter everything, and pack for the move. Oh, and find a rental property. While working full time and hopefully without triggering a massive flare.

I wasn’t prepared for the emotional work involved in decluttering. I luckily am not dealing with hoarding issues or anything like that, but I’m finding that many of the items I’m having to sort through have a lot of memories associated. Many of those memories are not good ones, and more than once I’ve wished I could just pack up the things I want from the house and walk away from the rest of it. Not really an option, though. So I just take breaks when I need to, and lean on the Mister who is being a fantastic partner in all of this.

So sorting/decluttering is happening, but it’s a slow process. I guess if it were easy and quick, I’d have done it before now. We’re probably looking at the move in about 6 weeks, and I think we can actually be done and ready for the movers in that time.

Wish us luck.

When I sat down to write my surgiversary update, I realized it had been over six months since my last post. I had planned at the first of the year to start posting updates at least weekly, if not more often. The best laid plans, and all that. Spoonie life makes it hard to juggle all the things you want to do. Energy reserves are limited, and even though sitting down and writing a few paragraphs doesn’t seem like it should take that much energy, even just remembering that you were going to do it, or getting up to get the keyboard for the iPad if you manage to remember, sometimes is too much.

I continue to love my job. I have been working on some exciting technology projects to expand healthcare interactions for patients into the digital space, which is super exciting. I also have an opportunity to move into an area of data governance which is actually a personal area of interest, so that will be exciting for me. Most people find it dull and tedious but I’m not most people. Working full-time means I have very little energy left for the rest of my life, and it’s hard reconciling that with my goals and aspirations. But it’s the reality for so many of us Spoonies. I keep reminding myself how lucky I am to be able to work full time and support my family because many Spoonies struggle with the basic necessities and access to healthcare because they can’t work or can’t work full-time.

As much as I wanted my focus word for the year to be “calm” it doesn't appear that is to be my fate for 2019. A few months ago, Hubby and I were vacationing with some very good friends and discussing challenges we’re facing, and it became ridiculously obvious that the answer to many of our challenges is to sell our house and move closer to friends, work, and other interests and rent at least for a few years. This means that we now are throwing ourselves into decluttering, packing, and house repairs so that we can get our house on the market and start looking for a rental in our target area. Not “calm” at all! Calm may be on the other side of this, but it sure isn’t here and now.

Health-wise, things seem to be settling down. (Superstitiously knocking on the nearest wood item available.) I have found a new rheumatologist, and I really like her. She’s young and isn’t blowing off my increased pain with the fibromyalgia. She repeated a lot of lab work that had been done several years ago and not repeated since, and has confirmed that the psoriatic arthritis is indeed still in remission. This is good news, because while I’m still in pain, it means that there’s likely no joint damage being done at this time. She’s given me some things to try to reduce the pain levels, and admonished me to stop avoiding the mild opioids I’ve been prescribed if I need them in order to do the mild exercising we both know I need in order to reduce the fibro pain.

So that's my life right now… working, recovering, working some more, and trying to get the house sorted, packed, and market ready when I can. Hoping to come up for air sometime soon.