Puddle Days

Ever wonder why some flare-ups are worse than others, or why something that usually doesn't cause a flare-up suddenly does, out of nowhere? 

Sometimes our bodies are just primed for an episode or a flare-up. 

We don't always realize that we're already sitting at, let's say, 70% on our way to flaring, so even the smallest trigger will induce a full blown episode. 

For instance, my husband has environmental allergies. Dust and pollen are the worst, but a ton of fragrances and scents really bother him, so we keep fragrances in the house to a minimum. Now, normally, the scent of vanilla is fine. However, if he's been around flowers or has dusted the house, even the smell of vanilla will send him sneezing with nose tingles and itchy eyes. Not because vanilla is awful for him, but that he was primed for a severe reaction even if the trigger is minute. 

I find that the same principle applies with SO many of my illnesses. 

If my swelling disease isn't well controlled, something as small as getting flustered in traffic could cause significant swelling. If I've accidentally pissed off my intestines, it doesn't matter how safe the foods are that I eat, anything I eat for the next week will worsen the flare. 

So if I'm already exhausted - if I have already pushed myself too hard - any little trigger might cause a major disruption. The trick is to figure out what it feels like when you're primed to worsen and then take the time to let it settle back down to a manageable level - be that inflammation, pain, energy, etc... 

So sometimes, I'll actually be feeling okay, but I will take the day to be a 'puddle', which can feel wrong if you've grown up with the mindset that you need to constantly be productive. On these particular puddle days, my only job is to rest; to lie in bed, watch tv or listen to audiobooks, nap if I need to, curl up with blankets and become a puddle on the bed. That way, I can avoid the severe and painful flare-up that forces me to stay in bed for multiple days in a row. 

Puddle days are when I feel okay but know that I need to rest. 

Hearing Aid

It's been two weeks with my new hearing aid for my left ear. 

I have moderate to moderately severe hearing loss in my left ear, presumed to be from a disease called Otosclerosis. 

The first day with the hearing aid was incredibly overwhelming. I needed a break for a bit, and had to turn the volume down. The next few days were really interesting. I noticed that when I take my hearing aid out at the end of the day, it feels like a lightswitch on my left ear. Trying to get used to the sound of my own voice has been strange as well, along with some of the robotic sounds, especially whistles and higher tones. After the first few days, I was able to turn the volume to the preset level, my headaches reduced, and my brain has adapted to certain noise sounding a bit different. 

It has been SO nice to hear almost normally out of that ear again. Catching sounds I haven't heard in months, not having to always ask 'what?', feeling less off-balance from the hearing differences. 

The hearing aid I went with was the Phonak Audéo L50-R. I went with it because it's rechargeable, so I don't have to worry about small batteries all of the time (especially with my deteriorating eyesight), and it's a behind-the-ear model, which allows me to listen to my audiobooks or music via bluetooth. I am loving that feature. 

I think it's pretty incredible that we have this kind of improving technology. 

AND, I think you all know by now my beliefs on medical aids. If you need it, find ways to make it pretty! So I have been accessorizing my hearing aid. I have found some ear cuffs with chains to hook into a holster, plus I've made some cute little charms to wrap around the wire. Why not, right? 

I Like Good News

Recently we found out that I have inflammation in the cartilage of my ribs - including in the joints connecting the ribs to the sternum as well as the ribs connecting to the spine. 

Yes this is super painful. 

No, there's not much that can be done about it, but we have a plan for potential treatment in the fall that may ease the pain and reduce the inflammation. 

This is, however, really common in patients with Ankylosing Spondylitis and is going to be an ongoing, chronic, issue. 

With the history of AS, there is always a chance that the ribs could start fusing to the spine. With the level of pain that I am feeling, we wanted to make sure that there's no sign of fusion starting at this point, so I had x-rays done today. 

It's good news!!! 

There is no sign of fusion or rib abnormality (imaging cannot identify the inflammation). So there is no fusion, no visible joint or bone deterioration, just incredibly painful cartilage inflammation. 

I like good news.