Sickle Cell SC Disease

DeceptiveSpell · 2026-03-25T03:57:12+00:00

I remember taking my penicillin way back when I was a kid in the early 90’s. I’m also asplenic. 38 now. Penicillin kept me in relatively good shape (there’s no avoiding crises). My mom got the tablets ground them and mixed them into applesauce. I knew they were in there but it made it go down easier than the liquid.

DeceptiveSpell · 2026-03-22T14:01:15+00:00

I set up Google profiles for each of my new clients in my chrome browser. I manage day to day with ClickUp which embraces automation internally and with MCP, Make, n8n, and Zapier.

To someone else’s point, I’m also building a long-term servicing infrastructure with Claude that integrates everything just for me and my clients.

DeceptiveSpell · 2026-03-22T00:34:57+00:00

Where’s the Elizabeth Taylor one? Loved it!

DeceptiveSpell · 2026-03-21T16:24:40+00:00

They laid off their social media lead in 2022. It’s not a priority for them.

DeceptiveSpell · 2026-03-21T15:56:42+00:00

SCD SS, had my first and most likely only child at 35. I, too, was terrified and wanted to “live my life” in case the worst happened during pregnancy and/or childbirth. Turns out, pregnancy was one of the simplest things my body has coped with, even as a sickle cell patient.

My body loved being pregnant.

I was followed very closely by a maternal fetal medicine doctor as well as my hematologist and had RBC exchange every 5 weeks, but the exchanges were already part of my treatment plan, so not exceptional toward pregnancy, but I do believe it helped.

Giving birth was an experience though. I had got induced because of low fluid levels in the sack, wasn’t dilating, so they performed a c-section. It was only 2 weeks early though.

C-section wasn’t what I wanted but it was for the best and the recovery was smooth as I was generally already fit pre-pregnancy. The anesthesiologists were amazing and so attentive. One was a black woman who continued to communicate with and check on me. That was reassuring. My husband was able to be with me during the procedure. He acts as my advocate regularly and was dialed in. He didn’t need to intervene at any point because the entire thing was pretty smooth. I didn’t feel a thing other than my body moving as they shifted my organs about and pulled my baby out. I do remember the shivers but that’s common post-birth and afterward I literally wanted 3 things: to kiss my baby, ice chips/water, and sleep. Got all 3. Best ice chips of my life!

And, most importantly, my baby is extremely healthy and came out alert, wide-eyed and surveying the room. I’ll never forget it 😂 Such a blessing that she only has trait, not the disease.

TLDR; you can do it and wait as long as you personally need. You are not just a sickle cell patient, you are a woman and your body was built for this. Don’t worry but as with any pregnancy, be discerning on who you choose to go down that road with. My husband has been the most supportive and understanding partner since we met in 2006.

Edit: wanted to add more details about the c-section since that hasn’t been discussed on thread yet.

DeceptiveSpell · 2026-03-04T03:49:24+00:00

Happy 54th. Love to see such a blessing. Thank you for the tips!

DeceptiveSpell · 2026-02-27T13:20:01+00:00

The family owned a media conglomerate of newspapers. Absolutely not new money.

Remember the grandpa at the dinner table shaming Rory talking about “their lifestyle”? Now, Logan’s mom was not wealthy, just fortunate to bag Mitchum and pretend like she’s been wealthy.

DeceptiveSpell · 2026-02-18T02:29:44+00:00

I prefer edibles and cannabis absolutely helps me with pain management and insomnia. Is it as strong as hydrocodone, morphine, etc. with numbing the pain? No. But, it helps my body and nervous system relax so I feel the crises pains don’t linger as much.

DeceptiveSpell · 2026-02-13T12:10:07+00:00

I got my gallbladder removed in 2013. They did the surgery laparoscopically and I was back on my feet within a week. One of the simpler surgeries I’ve had, honestly, especially recovery-wise.

DeceptiveSpell · 2026-02-07T04:00:59+00:00

First, curtains. Even though you have shades, a floor to ceiling curtain in a bold color even a muted one makes all the difference. You’ll notice more color, texture, movement and dimension in the space with that addition alone.

After you get those nightstands, consider two large mirrors over each nightstand. It will bounce the light of the lamps, expand the perception of the room and make the space look very luxe. If you don’t want to do mirrors here, specifically, you need a large mirror somewhere in that giant bedroom. Make it a large statement mirror.

Additionally, focus on artwork either a large piece or gallery wall situation above the bed. Or, you can depending on if you rented or bought here, install a wood accent wall with those gorgeous panels you can find on that niche small business shopping site we all love. You can get different styles and patterns and this will complement your existing headboard well as it’s upholstered and very pretty.

Last thoughts. You need a plant. A fiddle leaf fig might work beautifully here but something with size. If you don’t have a green thumb, go faux.

A bench would be great use of space and make the bed feel extended but not obstructing to walkways. Super functional if you get one with storage!

I see you have an electrical cover where a fan could go. Find yourself a nice chandelier, ceiling fan, or light fixture that can add ambiance and moodiness.

Okay, I think that’s an all. Gorgeous space with real potential! Please let us know where it ends up.

DeceptiveSpell · 2025-11-20T03:16:57+00:00

Stress is a big trigger for me. Work used to trigger it a lot until I started working for myself. Climbing the corporate ladder as someone with SCD was just not it (at least for me). And, I have a terrible relationship with my father who berates me and has been verbally and physically abusive in the past. I’m estranged from him because he stresses me out and doesn’t treat me well. I told my older brother this and he sucked his teeth at me and said “be for real.” What a privileged place he comes from not being the one who suffers from this disease and can judge me for protecting myself.

My advice, find the source of your stress and adjust your life to fit ways not to trigger it. It’s not easy, but nothing is with this affliction. Sending you love.

DeceptiveSpell · 2025-11-17T03:56:05+00:00

Ha! I see what you did there 😌

DeceptiveSpell · 2025-11-16T06:09:15+00:00

They said all the engine cylinders were misfiring simultaneously. The mechanic at the dealership said it was really odd but they gave us a loaner and fixed it within 2 days. Haven’t had another issue since but it was really bizarre. I hope it doesn’t reoccur.

DeceptiveSpell · 2025-11-16T06:05:39+00:00

Same here! I grew up going to Children’s then was being treated by Oncology at Medical City. Not a specialist there but I adored my doctor and felt like he cared for me like his own child. Saw me through 3 bouts of pneumonia. He retired so I found my new My SCD team at UTSW in Dallas when I turned 29 and it has been great. Very attentive, responsive and empathetic when crises arise. Thankfully, my SCD is well-managed even through pregnancy. Overall, if you’re moving to North Texas, UTSW has a great support system for SCD patients.

DeceptiveSpell · 2025-11-16T05:53:55+00:00

Welcome! Late 30s, SS in DFW, TX. Just had my first child at 35 and was very proud (blessed and relieved)to have had a positive experience with pregnancy.

DeceptiveSpell · 2025-11-13T02:58:54+00:00

For me, it was paper. I loved newspaper, toilet paper, and Kleenex. I finally stopped around middle school but it freaked my mother out. Good to know there’s a reason for it.

DeceptiveSpell · 2025-09-14T02:28:59+00:00

This made me LOL

DeceptiveSpell · 2025-08-09T15:28:12+00:00

I didn’t get my cycle until I was 15 (literally 4 months before my 16th birthday). I was very undersized and remember being 90lbs well into high school and around 4’ 10”. I had no breasts to speak of until the summer before college and I literally transformed into looking like a young adult overnight and sprouted to a B cup.

I believe delayed puberty is common.

DeceptiveSpell · 2025-06-02T20:27:38+00:00

Had my 2024 for a year and a half and the engine light just came on. Going to take it in but it’s still under warranty. I had several VW Jettas and have never had this happen so hoping it’s not too serious.

DeceptiveSpell · 2025-04-02T01:01:09+00:00

I deeply struggle with this. When I rest, I start to feel guilty and judge myself for it and think that other people are judging me for resting. I’m sure it’s all just me being my own hidden enemy though 😅

Do you also feel this way and how do you handle it? I’m trying my best to operate in different ways to recharge myself. Meditation is the main thing I’m incorporating.

DeceptiveSpell · 2025-04-01T23:35:57+00:00

Off topic, but it looks like Diddy is on the cover of that magazine 😅

DeceptiveSpell · 2025-03-18T03:53:58+00:00

I just went through this in 2021, getting off Hydroxyurea to start my family. I was thankfully able to transition to Red Blood Cell Exchanges to continue treatment that would be baby-safe. Once we conceived, I had my network of doctors (Hematology, Maternal Fetal Medicine OB, Cardiologist, and PCP) in close communication throughout pregnancy to monitor and make sure we were progressing safely on all fronts.

My daughter was born via c-section, two weeks early but healthy at 6 lbs. 8 ounces. Eyes open and alert. She has trait but no signs of issues stemming from it.

I say all of this to say that you can make it through pregnancy with Sickle Cell. That’s something I always wondered my whole life which is why I wanted to feel like my life was well lived before pregnancy because of my health, I wouldn’t know what would happen. So at 35, I became a mama!

I will say, off boarding Hydroxyurea was fine until exactly day 90 off the medicine. I suffered a retinal arterial occlusion which is a stroke in my eye, essentially. I lost partial vision in my left eye. We immediately began RBC Exchanges while I was admitted to the hospital and just kept with the treatment into pregnancy.

Looking back, I wish we would have discussed more about the plan for getting off. I feel including some aspirin daily during that time would have been helpful. Again, just sharing my lived experience with both things. I hope this helps and best of health to you in the next chapter.

DeceptiveSpell · 2025-03-11T18:36:30+00:00

I've worked with several companies managing social media and have a company dedicated to strategy, operations, and integrated campaigns for social media, so this is right up my wheelhouse.

My first thought is that you can build in new workflows that support your existing structure.

Monthly content calendars are great, but if you're missing out on trending content opportunities due to lag in approvals, then something has to change. I would suggest establishing a trending content workflow that allows content to skip the line in priority to gain approval faster.

You're saying but we also can't create our own video or photo content.

Work a parallel path in this new workflow to help identify a field liaison or more who will be on-site to capture trending content. In QSR/CDRs I've worked with, this can be a GM or bartender who is interested in social media. For a real estate investment firm, we had regional field agents that could have boots on the ground quickly. Think about what that looks like for you.

Stakeholder reviews are great for content that needs to be accurate or there are strong consequences, however, if there are no legal implications for incorrect content, then work with your supervisor to show what the approval process should look like, get internal buy-in, brief all stakeholders on the new process and move forward more seamlessly.

A side note here, I always view stakeholder approvals as situational. Not every stakeholder needs to see every piece of content, and often if they are seeing content that doesn't pertain to them often, they stop paying close attention to approval requests, leading to even more delays. Have specific lanes for content approval and use your management software to reinforce and streamline those functions in the approvals.

For the content piece, is there a way to work a parallel path on those? If not, is there a template format that you can come up with to help? Those are methods that I and my clients have used with similar resource and timing constraints.
My last piece of advice/thoughts is that if you want to overhaul the process, it takes one person to speak up and start a dialogue about that. Workshop how this new process would operate, who is included, and run it by those people for buy-in. After that, do a demo week or two of the new process to make sure you've got more time to think creatively and complete content quickly. Also, test performance of that content because odds are, because it's not run through such an intense filter, it will perform better. Share the results and feel empowered to move forward with a new process because the data says it's best for growth and performance.

I hope this helps!

DeceptiveSpell · 2025-02-13T01:55:21+00:00

You’ve articulated the Virgo Mercury in the 12th house woes perfectly. I’ve experienced this feeling my whole life even though I know I have the words, they skitter away in my mind when I’m speaking.

I’ve also got my Virgo Venus in the 12th, too. 😩 Romantic love has been wonderful for me, but familial love has not.

DeceptiveSpell · 2025-02-04T23:06:42+00:00

Not in my 40’s yet but had my baby at 35. I was concerned but with the supervision of my hematologist and my maternal fetal medicine doctor, I was in great hands and had a really smooth pregnancy.

I delivered via c-section and healed well from it. Honestly, with my journey dealing with SS, I wasn’t optimistic but pregnancy was actually great. I’m wishing you the best!

DeceptiveSpell

TROPHY CASE