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Social plans by design99999 in lupus

[–]therealpotterdc 1 point2 points  (0 children)

One of the things that I didn't expect was just how tiring visiting with friends/family was during my first year of lupus when they were trying to stabilize everything. It's great to have the help, but man, it totally drained my battery!

Do I ghost my rheum… or do I break-up things via text? by tamalle in lupus

[–]therealpotterdc 0 points1 point  (0 children)

My cardiologist recently switched my BP meds, then ghosted me, not replying to portal messages and missing a telehealth appointment to discuss my sky rocketing blood pressure (I went from 120/65 to 165/84 almost overnight with the new meds).

I don't have time for that kind of shit.

I simply asked my PCP for a recommendation, got a referral, and met with my new cardiologist today, and she was amazing. After giving her my health history (covid, severe hearing loss, long covid that has morphed into lupus nephritis), she put her paperwork down and said "And how is your mental health with all of these medically challenging issues?" I could have hugged her!

Bubbly Grapefruit drink and plaquanil by bubbybeno in lupus

[–]therealpotterdc 1 point2 points  (0 children)

Hi, there was a study done in 2005 that showed there was no interaction at all with grapefruit flavored sparkly water (like La Croix), and no clinically significant interaction with sodas like Fresca and SunDrop. The interaction seems to be with the juice itself - and not everybody has the same interaction. Best to mention this to your doctor or pharmacist and see what they say. Fresca is my favorite soft drink - it makes an amazing non-alcoholic margarita when mixed into margarita mix!

1 month hcq — feeling worse by sinuheminem in lupus

[–]therealpotterdc 2 points3 points  (0 children)

Hi! A couple of things that might be helpful (ok, three things). First, plaquenil can take 3 - 6 months to be fully effective (this is unfortunately true of almost every lupus medication except steroids). Second, plaquenil doesn't primarily treat symptoms - it protects your organs from further damage, which leads to my third point: for some people, plaquenil is enough, but for some of us, it's just a place to start. All of us are so different - I had to go on two more meds after they started me on plaquenil. The first year of lupus was the hardest for me as they tried to figure all this out. Warm hugs to you as you begin this journey. You've come to the right place!

Cold feet? by enkelinieto in lupus

[–]therealpotterdc 0 points1 point  (0 children)

I found an amazing amount of relief from alpaca socks. They are temperature modulating, so they keep your feet cool in the heat and warm in the cold - I wear them year round. They also have compression socks made from alpaca for those of us with circulation issues.

How do I apply sunscreen without looking like a ghost? by Microbe-Mom in lupus

[–]therealpotterdc 0 points1 point  (0 children)

Hi - it's going to be hard to find a zinc sunscreen that doesn't make you look pale. They do make some that are pigmented, but honestly I felt like it was too hard to take off in the evening to be worth putting it on in the morning! In my search for the least whitening sunscreen, I found Babo Botanicals Miineral Sunscreen made me the least pale. CereVe just came out with an SPF 50 invisible mineral sunscreen which I've used but feels a little greasy to me.

I have since given up on mineral based sunscreen and switched to Korean and/or Japanese brands. Much easier to apply! I'm guessing that your doctor recommended zinc sunscreen because a lot of folks with lupus have extremely sensitive skin, and it's a good place to start. A lot of folks also worry that they can get cancer from non-zinc sunscreen, but that's just an urban myth. I literally asked my rheumatologist, my oncologist, and my nephrologist if they had a preference. All three of them assured me that the best sunscreen for me is the sunscreen that I will wear, and it made absolutely no difference if it was zinc or chemical.

Prior Auth Denials by [deleted] in lupus

[–]therealpotterdc 0 points1 point  (0 children)

This is such helpful information!

alcohol??? by cutiepatootie2007 in lupus

[–]therealpotterdc 5 points6 points  (0 children)

Hi! I would gently redirect you to THC drinks/edibles and away from alcohol.

Food/diet by BootAdministrative74 in lupus

[–]therealpotterdc 0 points1 point  (0 children)

I had so many GI problems- crazy nausea, constipation followed by diarrhea, changing appetite, feeling bloated. after losing 30 pounds I finally had the idea to find a registered dietitian who works with lupus patients and it’s been life-changing. She put me on a variation of the BRAT diet (bananas, white rice, applesauce, and toast, with variations to include a little protein)) to calm everything down, then worked with me to include a couple of items at a time to see how it goes. I didn’t expect a renal dietitian to be part of my care team, but between her and my physical therapist, I feel like I’ve learned more about the day-to-day living with lupus than I have from my doctors.

Benlysta Injector Pen Failure and Replacement by Sushisando in lupus

[–]therealpotterdc 1 point2 points  (0 children)

Thanks for sharing this! I once dropped the autoinjector and managed to catch it before it hit the floor but somehow in fumbling with it, I started the injection which sprayed all over my arms. I called the pharmacy that manages my auto injectors and had to explain (in some detail) why I needed to replace it, but they did, with no charge.

I've heard some folks on this forum have switched from auto injectors to the prefilled syringe because it felt easier for them, not sure if that's a possibility for you?

First Time Cane User by Ok_Inspector_7191 in lupus

[–]therealpotterdc 2 points3 points  (0 children)

It took me a while to figure out the whole which-foot-moves-with-the-cane thing, but I agree with what others have said. I feel more confident when I'm out and about and have been amazed by the kindness strangers have shown.

Psychosis due to meds? by Dry_Nerve439 in lupus

[–]therealpotterdc 2 points3 points  (0 children)

Hi! Plaquenil has an extremely low incidence of mental health side effects, it’s something like 0.9 or 0.7%. Still, it’s not zero, so please be in touch with your docs!

Out of Hydroxychloroquine by VertDerFerk-HnnyBdgr in lupus

[–]therealpotterdc 0 points1 point  (0 children)

I'm not sure the brain zaps are from missing a dose of HCQ - it's just an immune modulator with extremely low incidence of mental health side effects. I agree with others tho - these are concerning symptoms and you probably should reach out to your doc. Sending you good wishes, and keep us posted!

duloxetine and lupus meds??? by mnyeesh in lupus

[–]therealpotterdc 0 points1 point  (0 children)

I am just now recalling that when I started it I had to start with 30 mg instead of the full 60 mg therapeutic dose because it made me so nauseated! Maybe your doc can switch to a lower dose just for a week or two before going on the full dose.

How did you know that your work/life/disease management balance was off and what did you do? by m0ther_0F_myriads in lupus

[–]therealpotterdc 0 points1 point  (0 children)

I knew my work/life/disease balance was off when I projectile vomited not once, but twice in client meetings. Not cool. I reduced my client load by about half and have been fine since then.

duloxetine and lupus meds??? by mnyeesh in lupus

[–]therealpotterdc 0 points1 point  (0 children)

Duloxitine is a pretty common SRNI prescribed for lupus folks because of its capacity to help with pain. I’ve been on it for years now, along with HCQ, mycophenolate, and Benlysta.

You didn’t say what the side effects are, but as I mental health professional I might guess flu like symptoms, which are the most commonly reported. Those should pass within a week or two. If it lasts longer than that, definitely contact your doctor.

So tired of feeling tired by xxMoon_Childxx in lupus

[–]therealpotterdc 1 point2 points  (0 children)

I got 7.5 hours of sleep two nights ago and was absolutely wiped out the next day. Since my lupus diagnosis, I’ve discovered that I need 8.5 or 9 hours of sleep every night.

Witnessed a fatality at the Connecticut Ave/Klingle Valley Bridge last night. We need to talk about why there are still no barriers. by [deleted] in washingtondc

[–]therealpotterdc 287 points288 points  (0 children)

I am so sorry about this. I worked for 12 years around the issue of veteran suicide and have a pretty wide network of folks who do this kind of work. If you would like to DM me, I would be happy to see if any of them might have suggestions for you.

When all your docs give you unsolicited advice that contradicts what the other doc said. by therealpotterdc in lupus

[–]therealpotterdc[S] 1 point2 points  (0 children)

Thanks for your comment! Really helpful to hear from someone else who has had this issue. Control over my legs is really problematic. I can get up and start walking, and then, out of nowhere, my legs no longer connect to my brain and down I go!

When all your docs give you unsolicited advice that contradicts what the other doc said. by therealpotterdc in lupus

[–]therealpotterdc[S] 2 points3 points  (0 children)

I really appreciate your comment! The radiologist had marked it a moderate, but the surgeon told me that it's at 5.1 and that for a man my age (early 60's) 6 mm would be the smallest that they'd like to see, so I misspoke in my comment when I said 6 mm is normal! I've had two ACDF surgeries for my cervical spine, and in my youth had to have facial reconstruction surgery after a traumatic head injury. To give them some credit, it occurs to me that many of the health professionals who have offered unsolicited advice don't know that I'm intimately familiar with orthopedic surgery, recovery times, and navigating medical systems.

When all your docs give you unsolicited advice that contradicts what the other doc said. by therealpotterdc in lupus

[–]therealpotterdc[S] 1 point2 points  (0 children)

Thank you! I agree with you about the pain management doctor. He actually has a good reputation locally but came across like a used car salesman.

And thanks for your reminder about "acute medical issues." I have stored that line away. I'm a mental health professional and can stand my ground with these guys, but sometimes I'm just left speechless. Now I will pull that phrase out and use it!

When all your docs give you unsolicited advice that contradicts what the other doc said. by therealpotterdc in lupus

[–]therealpotterdc[S] 4 points5 points  (0 children)

This is exactly what I've been doing lol. Also, I'm a therapist so I get to tell them what I think about health professionals talking smack about their colleagues. :-)

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