🗞️ Update 01/14/2025 🗞️

 

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Some of this content was originally shared in a different blog, and the titles were full of errors. Oy! 🤦🏻‍♀️I have since corrected them, but for now ... this is a new update.

Because of some new followers and friends ... I wanted to share my horrific experience from August 2023. One that changed how I actually care for myself. Not that I wasn’t hygienic, it was about how I viewed the care products. I loved scented items. Dove’s new CRUMBL line is hurting my heart. I would LOVE those items ... can’t use them. 

Read on for why ... 

Most of this might seem silly, but – it isn’t … and it pertains to why I am asking for what I am asking for in terms of personal care items, even detergent on my EMERGENCY NEEDS list.

Most of y’all know (some may not) ... 

I spent 10 days in Sunrise Hospital’s burn care unit and in isolation in August 2023. Even though my mother was there for about four (4) days for her own sores that also required surgery, she was not allowed to visit me. She even asked the nurses to wheel her up to my floor, they refused. Not to be mean. It was because I was far too sick to have visitors. I wasn’t allowed to leave the floor to see my mom either.

I didn’t look sick; but let that be a lesson about “judging a book by the cover”. 

[Selfie taken 8/2/2023 at 11:14am using my phone. I had only been in this room less than 11 hours. Spent most of 8/1 in the ER "dungeon" (holding area; over 16 hours. That was a nightmare - no rest at all, too noisy). I was given a room before my mother, and I didn't understand why at first. Right here ... I am on about 2-3 antibiotics and my wound cultures came back positive for MRSA, in addition to cellulitis and sepsis. But, I don't "look" sick, do I?]

[Emergency Room 8/1/2023 1:07am. I believe this was when I was told my WBC was through the roof. This was the first IV I had. I ended up blowing this and two others before a MIDLINE was installed.] 

[Emergency Room 8/1/2023 1:07am. Antibiotics, two doses of the same one going at the same time; another one is being piggy-backed. Even after all this, WBC "dangerously high". Definitely wasn't going home soon.]

The fact I was not able to have any visitors should tell y’all how sick I was (I still can’t believe it). That is why I am still traumatized by and from it. I had cellulitis, MRSA, and sepsis. 

It stemmed from a “sore”, one I thought was a pimple. A simple pimple. Who wouldn’t have popped a simple pimple. It wasn’t a “simple pimple”. 

These are the “graphic pictures” I allude to in posts. I do consider them graphic 🫣

PLEASE NOTE THE WARNING ABOUT THE PHOTOS ...

This is how bad it was just about two “hours” before I finally went to the ER ... I literally couldn’t stand the pain. I had been dealing with this for a few days. It hurt to lay down, stand, yes ... sit. Pain would wake me out of a sound sleep!

[7/31/2023 - 10:22pm]

That is the result of Hidradenitis Suppurativa (HS) – it is a lifelong, chronic condition. These “sores” go from 0-60 in about two seconds. I have a more moderate form of it, though one might question that assessment looking at this. 

August 2023 progression: 

[7/30/2023 - 12:42am; just 22 hours before the first picture ⬆️ it started about 7/28 as that "simple pimple"]

[Taken 8/1/2023 - 2:47pm by a member of the Sunrise Hospital Wound Care team using my phone. This was AFTER the ER doctor did some wound care, and even a debridement. Surgery on this was 8/7/2023. Yes, some of the tissue had gone necrotic and needed to be removed.]

I was released from the hospital with antibiotics on 8/10/2023. But, starting 9/29/2023 to roughly the end of February 2024, I had to undergo 44 days of antibiotics off and on due to flare-ups. 

[How it started more recently in February 2024, same as the one from July/August 2023. Looks like a very sore pimple. It isn’t. Some might dismiss this and think I was being dramatic. This was 2/13/2024 at 7:07pm.]

[This was 2/14/2024 - 4:06pm (about 21 hours after the top picture); just 19 hours before my virtual visit with a doctor]

I used Now Clinic to have a virtual visit with a Nurse Practitioner who was horrified by it and agreed it not only looked painful but absolutely needed antibiotics – THAT DAY (2/16). 

[2/17/2024 - 2:43pm; after one round of Doxycycline. Yes, it got that bad in three days.]

This isn’t curable. There is no known cause either. And, even if I were to engage in some lifestyle changes – there is NO guarantee it would go away. HS (hidradenitis suppurativa) treatments aren’t one-size-fits-all. Back in 2024, my doctor was more concerned about the MRSA, as well as a sepsis relapse. I was not able to see an infectious disease doctor due to the insurance and some of the doctors’ policies. So, I am concerned about that. 

From about February 2024 to current, my life went into a downward spiral between housing problems, caring for my mother, another surgery, my car literally stopped running, and culminated with my mother’s death in November 2024, finally losing all income in December. 

These “bumps” are EXTREMELY painful. And, although it is inflammation – antibiotic pills are used to treat HS because bacteria on the skin or in the HS lesions can flood into the inflammation. Bacteria is not the only reason HS happens – it’s also the immune system. Antibiotics can be used for a week or two, or months at a time. My doctor said I would likely be on antibiotics ... the rest of my life. I have been lucky for a year or so. I attribute that to prevention.

I have been able to prevent them with the use of a specific type of body wash – Dove Sensitive. The Nurse Practitioner from February 2024 asked what I was bathing in. Gave me a thumbs up and told me to continue it. I can only use non-scented lotions. Lubriderm has been good. And, using Dreft Newborn Stage #1 detergent has definitely helped me.

This is why I ask for what I ask for. I don’t know anyone who would want to go through this once, let alone again. After even a few mild rounds, it gets frustrating and painful.

In addition, this condition can cause joint pain and fatigue – just what I need with a folate deficiency and clinical hypothyroidism – two other problems that can cause fatigue. 

I also have eczema. And, it’s pretty bad as well – my fingers being the worst, and when it flares up – my fingers are difficult to use. Painful is just one of the issues. They’ve been so bad they’ve literally “cracked” open in certain places and started bleeding. I have some prescription ointments for that. 

I also forgot the debilitating migraines and high blood pressure I deal with. I recently had to discontinue my HBP medication due to the fact it was worsening the migraines. Things haven’t been too easy. 

With the death of my mother (and no time to grieve) and the current stress of my situation, I am barely functioning. 

For now, I have to wait until a case worker is assigned to my case. But, from there?

[Desperately needed a Snape fix. Situations like this are why I absolutely LOVE Snape 🥰🤣 I miss Alan Rickman so much; can't believe he's been gone 9 years]

Please understand that I am just trying to get by. 

 

Thank you,
 

 

Marie

HS Information:

https://www.hs-foundation.org/