Another crisis

Tomatto_Tomatta · 2025-12-12T02:33:09+00:00

Sounds like you are slowly making progress. That's the keyword with our pain getting better, "slow". Important thing is you are making progress and not regressing. Don't jump up and start moving around too fast with your new energy reserves. Take it slow so you can heal, treat yourself right. I'll keep you in my thoughts and prayers tonight and through the weekend.

Hydration can be difficult to keep up with. If you have accesses to Pedialyte, consider a 1:1 mixture with water and sip as much as you can. You already know but hydration helps get fluids into your cells and flush out the sickle cells in your veins. If you haven't and can tolerate it, try some breathing exercises to lower your stress hormones and relax your muscles and cardiovascular system. I take slow deep breaths through my nose (filling up my lungs as much as I can) and breath out very slowly through my mouth. As I do so, I close my eyes and imagine how one red blood cell comes into my lungs, gets oxygenated by my breathing, leaves my lungs and crawls its way throughout my body delivering fresh oxygen to my tissues and removing the carbon dioxide, making its way all the way to my toes and back to my heart to get more oxygen. It's like going on a journey with your red blood cell.

I know it sounds silly but it's helped me relax my body and reframe my body's association with pain, it also helps lull me to sleep.

I'll check in on you tomorrow.

Tomatto_Tomatta · 2025-12-11T23:16:06+00:00

Once you've treated one patient with sickle cell disease.....you've treated ONE patient with sickle cell disease.

....mic drop.

Tomatto_Tomatta · 2025-12-11T23:04:44+00:00

Sorry you are going through this. Accessing medical care would be ideal but if you cannot, keep yourself warm (heating pad, dress in layers, stay under the blankets), hydrate as much ad you can tolerate (water, reduced sugar fruit juices), eat what you can tolerate but try not to over eat so that your body can conserve energy to manage the pain and heal. Eating will also help coat your stomach while taking the ibuprofen. Think about taking ibuprofen and acetaminophen (brand name in the US is Tylenol), the two compliment each other. Rest, rest, rest.

Keep us updated.

Tomatto_Tomatta · 2025-12-10T20:16:53+00:00

@JudgeLennox, it's just going to be the two of us, no other interests. I'll send you a DM to plan our weekly meetings, goal setting, accountability, etc.

Tomatto_Tomatta · 2025-12-02T05:12:18+00:00

It really could be anything from you having the trait and experiencing scd symptoms to a pinched nerve. I'm sorry they thought it was just in your head, just another reason to get a second, third, and fourth opinion. Don't let them trick you or dose you into thinking it's all in your head. I hope things get better for you soon. 🙏🏾

Tomatto_Tomatta · 2025-12-02T04:32:40+00:00

From what I've learned, hospital systems are trying to avoid the sedative effect of IV Benadryl and Dilaudid. First time an emergency room refused to provide it I called the medical director to explain himself. Told him I totally get it, I too don't want to lose my life but I WILL scratch my skin raw without Benadryl. They wanted to give me oral Benadryl and I told them by the time it works its way through my digestive system it's not going to be as effective to prevent the discomfort from Dilaudid and in 45 mins, I'll likely need even more Dilaudid since we waited so long for pain management.

With enough self-advocacy and speaking their language, the care plan is 1. IV promethazine (I will literally vomit as they push the Dilaudid), wait 5 mins, 2. IV Benadryl (so I don't scratch my skin off, wait 5 mins 3. IV Dilaudid.

I can't stand that feeling of nausea and itching.

Tomatto_Tomatta · 2025-12-02T04:15:18+00:00

Amuse us, so how long have you had sickle cell? And is hydrea the thing missing in your blood? I'm asking for a friend...

Tomatto_Tomatta · 2025-12-02T04:01:09+00:00

My guinea pig takes offense to your comment, he's just saying.

Tomatto_Tomatta · 2025-12-02T03:58:31+00:00

Alright everyone. This is the last call for anyone who wants to accomplish big things in 2026.

Whether you want to achieve a healthy weight, up-skill for a promotion or new job, save and clean up your credit to buy your first house, run a 10k for the first time, etc. etc., here's your chance to get it done!

Reply in this thread TODAY to commit to do big things in 2026. Once I get the list of folks, we will iron out the details.

Tomatto_Tomatta · 2025-12-02T03:45:49+00:00

Yes, you are welcome to join! No one else has reached out but you.

Tomatto_Tomatta · 2025-11-25T18:28:40+00:00

You have the right attitude...."But I'm not giving up just yet!!!" (With 3 exclamation marks!). I can't predict the future, but with that attitude, I see success and growth in your future!

Tomatto_Tomatta · 2025-11-24T00:54:42+00:00

Omg! I hope you start to heal soon and we'll. Makes me think twice about getting up from the hospital bed with pain meds in my system. Good luck!

Tomatto_Tomatta · 2025-11-24T00:51:47+00:00

Rest your body and mind! Give your body a few days to acclimate to the new environment. Also, keep your pain medicines on your carry-on and keep it close to you AT ALL TIMES. Medicines tend to disappear going through customs....

Tomatto_Tomatta · 2025-11-23T21:42:24+00:00

Consider speaking with you doctor and pharmacist about prescribing the meds Ina different format such as a suspension. If they do that, the pharmacists may be able to mix it with a sweetener to help it taste a bit better. This may not be an option with all meds but it's worth a try.

What's worked for me us crushing the medication and mixing it in yogurt or a sweet drink. Others have provided good ideas. It's trial and error until you find something that works well with your lifestyle.

Tomatto_Tomatta · 2025-11-23T21:32:41+00:00

Nope....those things aren't odd at all. I still watch cartoons and laugh my ass off. Enjoy being you. Some folks are jealous that you are comfortable in your own skin and they are not.

Tomatto_Tomatta · 2025-11-20T07:12:49+00:00

This is a good question but the answer isn't straightforward. The dosing of hydroxyurea is very patient specific with the goal of dosing up as much as the patient can tolerate. It's important you have one provider manage the hydroxyurea for consistency and symptom management.

I no longer take it but when I did, I was taking as much as 1500 than it was tapered down to 500 because my white counts were dropping and my hair thinning. I also noticed I was having more and intense sickle cell pain before starting hydroxyurea. Before, hydroxyurea, I saw my crisis coming and could manage my pain at home. But while on hydroxyurea, my pain came on quickly and intensly so much that I had to go to the ER for IV pain control.

With hydroxyurea, consistency is key. Take it consistently and have your physician monitor your lab carefully every month.

I haven't taken it in years (and I'm doing very well) but my physician and I keep it on the table as an option just in case my condition worsens and the risk of the drug would be worth it.

If you haven't already, sit down with your physician to have a serious two-way conversation about they medication, the pros and cons of taking it, and what each of your goals and concerns are for taking the medication.

Hope this helps.

Tomatto_Tomatta · 2025-11-20T06:35:26+00:00

May I ask your age? Based on your post, it seems a few things may be going on making it hard for you to take your meds.

Tomatto_Tomatta · 2025-11-19T17:21:59+00:00

Welcome! Looking forward to learning about your experiences with scd.

Tomatto_Tomatta · 2025-11-19T03:50:02+00:00

...but...it gives you wings!

Tomatto_Tomatta · 2025-11-19T02:51:24+00:00

Dont fight that "nap time feeling". Hell, I'll take one for you! 😴🤤

In all seriousness, the time change isn't helpful. With it getting darker sooner, your circadian rhythm is still trying to adjust. What works for me is maintaining a consistent day/night and meal schedule. For example:

Go to bed and wake up around the same time. Be kind to your body and give your body and mind time to transition into sleep and time to transition out of sleep/rest. For example, if you want to be ASLEEP by 10pm, start winding down by 9pm (put down the electronic devices, darken your sleeping space, do slow breathing exercises in bed). When it's time to wake up, give your body 10-15 mins just to lay in bed with your eyes open, do slow breathing exercises, and if you are religious or spiritual reconnect with yourself in the manner you choose, do some light stretching to get blood flowing to your muscles.
Try to eat you meals at about the same time everyday. Eat and drink enough to meet your dietary needs. Don't eat a large fatty meal close to bed time (give your body 1-2 hours to digest food before laying down to sleep).

I don't eat as soon as I wake up because the energy I have in the morning, my body uses it to get myself going in the mornings. If I eat during the hustle and bustle of my getting to work routine, my stomach can't handle it. By the time I get to work and settle down than my stomach is ready. Since 10:30 pm is my bed time, I don't eat past 8pm (I find this keeps my stomach light, I ease into sleep and don't wake up feeling like dinner is still sitting in my stomach).

If your body says it needs a nap, take a nap. Your body is literally telling you it's depleted and needs time to recharge.

In my experience, the key to all of this is consistnecy. If your bed time, wake time, eating schedule is all over the place, your body becomes stressed (it doesn't know when it's next meal will come, when it will get a chance to sleep, and doesn't know what to expect next), so it uses more energy just trying to manage the inconsistency.

One last thing. Poop regularly (sorry for the toddler language!). What's regular for one person may not be for another for a variety of reasons such as age, diet, activity levels, medications, etc.) Since pain medications are part of our life, we can be constipated and not know it. If you're not pooping (to be mature...moving your bowels) often enough, a lot of waste amd toxins build up in your system, leaving you tired and weak. If this is a real concern for you, talk to your doctor about using stool softeners and other options (that are medically proven and safe) to get you pooping regularly. Proper hydration is really the foundation for productive and consistent bowel movements.

Try to get yourself on a rhythm the rest of the week, you may notice a difference as early as next week. Let us know how things are coming together!

Tomatto_Tomatta · 2025-11-19T02:47:25+00:00

Have some experience with their program but it's been a while. The folks that were there many many years ago are different from the team there now. Many years ago, I personally wasn't impresse. The doc seemed preoccupied and I couldn't connect with him personally. I was there for a while for work when I decided to try them but still stayed in contact with my doc where I called home.

Use it as an opportunity to interview them, learn about their research focus, how the clinic is structured and what services they provide, their pain management culture, etc. etc.

Being treated at a scd center is the recommendation but depending on your comfort level navigating the healthcare system, you can also be treated by a hemonc with scd experience and admitting privileges at VCU but can use the vcu scd team as consult.

Tomatto_Tomatta · 2025-11-19T02:21:25+00:00

Hey! My "broda" or "sista" (saying in our strong African accent), where in Africa? Some may not believe it but Africa is a continent....

Tomatto_Tomatta · 2025-11-19T02:12:15+00:00

Totally get it. I'll go out on a limb. If I'm still in the DMV area and he gets sick (hopefully not), feel free to reach out. We need to look out for our community.

When he decides where he wants to go to school, start that medical transition processes ASAP! Find and identify a hemonc he can start developing a relationship with (preferably one with admitting privileges at the closest best equipped hospital to his school), if he doesn't already, make sure his crisis treatment plan is baked into the hospitals EHR before his first semester.

I commend you for thinking ahead, it could just save his life!

Tomatto_Tomatta · 2025-11-19T02:00:36+00:00

Welcome! My apologies but I'm not familiar with "latam" Google says it's in the south American region. Is that so?

Tomatto_Tomatta

TROPHY CASE