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Friday, December 1, 2023

Lupus Still Sucks...


We all know Lupus sucks but it's really sucks when you realize that I am back at my pre-pandemic health, which means I pick up EVERYTHING. During the pandemic, I found that I could be "healthy" if I didn't have contact with people. I didn't come down with any contagious bugs for 2 years. I did get sick with pancreatitis and a sinus infection from my allergies but that is expected,  sort of... but that's another story... 

Historically,  I am sick a lot, as most people with Lupus are but it is *always* worse in the fall/winter. I used to fight to stay healthy for as long as I could because I found that if I got sick before Halloween,  I wouldn't be healthy again until April. I can't pick up a bug too early in the fall season otherwise my immune system doesn't have it in it to fight off any of the tougher bugs that come around once winter is in full swing. If I can "hold out" and not get sick until after Thanksgiving. I generally will be healthier that winter season... However,  this year, I am sick and have been sick since Halloween.  🤧 

I will say it may be kinda my fault I got sick since I haven't been as careful and wearing a mask in public, like I planned... but I've been relatively healthy (for someone with Lupus,  Fibro and EBV) so I thought I'd be ok. I went out to see a play on Friday before Halloween, and then we saw Rocky Horror on Saturday that same weekend. We had a lot of fun but a few days later, we (me, angus and historyboy) all came down with stomach bugs, which they got over much quicker. Angus threw up once and was better 2 days later. HistoryBoy only had the intestinal end of it and again was better in 2 days...

For me, that stomach bug triggered pancreatitis. Two weeks later, I was feeling a little better. I hadn't been out since I had gotten sick so I went with Angus to take HistoryBoy to eye doc and then we grabbed Starbucks on the way home. I managed to pick up a URI (upper respiratory infection) in that short trip which I had for a week before the guys picked it up from *me* AND they were only sick for a few days. The URI for me triggered pluerisy. 

Realize, at this point,  I am not completely over the pancreatitis, I'm still on a modified diet and have to be careful of what I eat but I'm getting better. The pluerisy was awful. I haven't had it in about 10 years.  Now I have to try to differentiate between yhe pain in my side from pancreatitis and the pain from pluerisy, as my doc wants updates on how in feeling. Then, as I was getting better from all of this, I've got the stupid URI back. 😭 The guys having gotten over the URI fairly quickly, shared those stupid germs back with me, and I am down with it again, stuffy head, headache, post nasal drip, stuffy ears and ear pain. It will probably be another week before it is gone. #LupusSucks 

I will close by saying that winter is the worst with Lupus, for me. Sadly I was at my healthiest during the pandemic when I had no contact with anyone. I didn't pick up any bugs. It was wonderful to an extent. I have never known being healthy like that since I was 15... I will say what we all know #LupusSucks

Thanks for listening 

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Saturday, March 11, 2023

Trying to Get Healthy...

So I've been sick for quite a few weeks now... I didn't go to doc originally until it was day 5 or day 6 of being sick because I knew if it was a virus they wouldn't do anything other than what I could do for myself...

I had ear pain by time I went so I knew it wasnt just a virus anymore. URI and ear infection. Yay me. Given 5 days of abx. They  didn't work well enough so I end up sicker and back at doc now with URI still running rampant and infection in my other ear and an awful cough... 

Given stronger abx and steroids (medrol dose pack) this time. I didn't notice any impact first day. I was hoping steroids would jump start my energy a little, day 2 still not feeling it, day 3 I wake up with a little energy, enough that I load dishwasher and start it, start a load of laundry AND change sheets on my bed to get rid of germs. Then I ran out of steam and crashed... Day 4 I woke up tired. I can feel that the daily dose of steroids is decreasing as the energy level isn't what it was but since I was feeling a little better, hubby decided to take me out to lunch since I haven't been out of the house (except for Doc appts and pharmacy pickups) and he's is going on travel for 3 weeks, so he wanted a date day. I enjoyed our lunch (PS: Nan Xiang Xiao Long Bao in Cherry Hill, NJ is AWESOME, I highly recommend it) but I was so wiped when I got home that I couldn't sleep, my body was so achy, I couldn't get comfortable and as it was too early to take my nighttime meds so I have just rested in bed until now when I can take my meds and get the rest my body so desperately needs right now. 🙏🙏 for a restful, restorative sleep... 

Monday, February 13, 2023

The Day After Super Bowl 2023


#LupusSucks we know that, but today I feel it. I didn't do anything extreme yesterday. We ended up staying home because hubby is sick but I stayed up "late" not in my bed to watch #SuperBowl2023. If I am up "late," I am usually in my bed watching the tv or reading there so my body is screaming at me that I shouldn't get out of bed today. I didn't even want to get out of bed to use bathroom (I did), but I haven't made it to kitchen yet to get something to eat and my body wants that too... 

Not to be left out, my Fibro and Reynauds is joining in. My ribcage doesn't even want to be touching the bed that my body so desperately wants to stay laying down in and my hands cannot get warm. I am going to be wearing gloves today I think... a hot bath may help but right now that would take too much energy to accomplish... could be my EBV adding to this fun mix as well. It's going to a a fun day... 

I have no "spoons" to even begin today, let alone get through it. I know I haven't had much in reserves at all lately but this is the worst it has been in a while. Sadly, I can't even turn the TV on right now as I do not see the remote and do not have the energy to look for it. I am trying to get some energy to be able to get something to eat in a little but it may take longer than I think...

As I said #LupusSucks but #FibroSucks #ReynaudsSucks and #EBVSucks too. 

#LifeWithLupus 
#LupusAwareness
 #NotAllDisabilitiesAreVisible