updates from last post, warning: long, sorry!

[JennaShi]

How is everyone doing today? It's quite a sunny day over here in CA and I'm waiting for one of the kids to finish their class for the day. They both got caught up in playing and that resulted in her being late to class. Kind of funny when you hear little miss being forced out of their room for goofing around in the background of the camera's view, while bigger miss (Liz my bio daughter) is in class :D. Little miss is still learning boundaries haha. It's been a hard couple weeks but they have been working a bit harder on communication and how to treat each other, which has made a big difference, considering they both have online school and are home together alot of the day.

In other news, I have seen the Rheumy for a virtual check up for the Hydroxy med. It has been five weeks and I can say for the most part, my 5 day rash has left (thank goodness for Benadryl and Zyrtec) and my energy level has gone up, I seem to also think a bit clearer! I went from only being able to do one to three light things a day to being able to go throughout the whole day, most days: cleaning the house, going to the park or swimming, and running an errand or two maybe in the evening. I've had a few days of needing to rest more after doing something more intense or I think having a cold (achey joints, mildly warm feeling, and fatigue)? But overall am excited. I believe I wouldn't have been able to handle the really hard days that have come and gone with little miss or the terrible arguments the two girls have had, so I'm thankful and am looking forward to feeling even better as more time passes.

More news: I have officially graduated to an SLE diagnosis as Rheumy says there isn't a pre- SLE button, due to Raynauds, fatigue, positive ANA, low positive cardiolipin antibodies, sfpn, oral ulcers, joint pain. Neuro Musclular specialist confirmed EDS, will get invitae genetic test soon hopefully, and has recommended to look for a doc who specialises in EDS. One thing Rheumy mentioned is that if symptoms don't clear then the symptom isn't autoimmune. I have been having issues with forgetting things like appointments, and when tired at night, I have issues with word finding and words coming out jumbled. I didn't know if it's still early as SpanielMLady mentioned it takes 8 weeks, or if this isn't autoimmune related. One nice random thing is i haven't had random bouts of vertigo that last about a minute or less so that has been nice! Upped my gabapentin to 300mg a day as Pinpricks are getting more intense in the afternoon. I wonder if our bodies get used to taking it? I used to be sad as I felt that my body was falling apart but having the Hydroxy has helped with energy tremendously and has given me some hope.

Sorry this is getting a bit long. Xrays show more spurs in knee cap and feet, as well as fluid in knee. Will get an MRI for knee to see if it's OA related. I now have OA in hands, knees, and feet. Don't know if this is relate to pain and burning at front center of ankles spreading up and down legs and feet/ weakness when exercising. TENS unit helps alot when consistent.

Have a nice weekend everyone!

[MorIlse]

Nice report.I’m also in California.

I was diagnosed with Lupus in another country and then was confirmed here but then the rheumatologist kind of

Changed the diagnosis to UCTD.

[JennaShi in reply to MorIlse]

Hey Morllse, it’s nice to meet someone else in CA! I’m sorry, that sucks that they changed the diagnosis. Did you feel comfortable asking them why?

I personally think I’m in the UCTD category still because I have never had a positive sle antibody test and so far no organ (organs involved commonly seen in SLE) other than my stomach and intestines. I do have antibodies attacking different places though. It would be interesting to know why that doctor changed your diagnosis.

[MorIlse in reply to JennaShi]

So you follow any diet?I think doctor changed it because I also don’t have any compromised organs yet, just inflammation in my joints.

[JennaShi in reply to MorIlse]

I was told to drink alot of water and cut out gluten. I am recently trying juicing with alot of different veggies including beets. How about yourself? It sounds like you were instructed one diet and doc changed it? I’m sorry you’re having issues with your joints. I do as well, so far only showing up as OA though. Do you have a high sed rate/ esr? Mine are the highest they have been but still well within range. Do you deal with neuropathy of any sort? If so do you mind if I ask how you manage this?

[MorIlse in reply to JennaShi]

I try not to eat gluten though It is very hard.Avoid garlic, corn, soy, red meat, lactose products, sugar, refined flour products,

Tomatoes, potatoes, peppers, eggplant and beans....

[JennaShi in reply to MorIlse]

Wow that’s quite a bit! Avoid all the veggies all together or avoid until cooked? Do you have thyroid problems as well? I have heard to avoid night shade plants for those with thyroid problems so that is why I ask. They must have their reasons but i wonder as there can be good nutrition in some of those things if you cook them so they aren’t as potent, unless you’re allergic to them. I used to follow the aip diet and had an elimination phase but after that there was a trial phase to which foods were added back in one at a time to see if there was a reaction.

[MorIlse in reply to JennaShi]

I try to avoid them. Cooked or raw.I love to cook with garlic but I have minimized so much is sad.

I don’t have thyroid problems.

I drink almond milk, a lot of almonds in my diet...I make my own almond flour tortillas.

You can try, see if you feel any difference.

I also have trouble sleeping which is sooo important for Lupus so I sleep until 10:30 when I work from home.

Hope you find a way to feel better.

In What part of California do you live?

[JennaShi in reply to MorIlse]

Have you found much relief with your diet change? There’s so much you can do with almond and coconut flour 😋!

I’m sorry you’re having trouble sleeping, I do as well and find if I don’t take my Gabapentin I feel horrible zaps, pin pricks and burning; it makes for a rough night. I hope you get some better sleep, I agree that it’s so important!

Thank you. I’m in the central coast, how about yourself?

[MorIlse in reply to JennaShi]

It is hard to know when the meds haven’t kicked in but I keep a diet.Gabapentin didn’t do anything for sleep.

I take melatonin and unisom as sleep aids.

I’m in The San Fernando valley.

Where is central coast? like Santa Barbara?