Author: hidradenitisandme

Sometimes I put my HS experience in a neat package or nutshell so as to cut down on any unnecessary cause for concern …but today I’m granting myself permission to be completely transparent.

The past couple days, I’ve been oozing blood clots and clumps of pus from the hole in my lower abdomen. HS is a bloody disease, so it doesn’t alarm me, but I did just have a “really?!” moment when I went to check the area and came back with my fingers covered in blood clots and pus. This mess is a bit much!

Currently taking tumeric… cinnamon.. And oregano oil. I think I need to observe if any of those supplements may be contributing. Who knows?! I’m telling you, you have no idea what it takes to function as if you’re normal when you’re so abnormal. Like yeah, I think I’d trade this mess for a number of other conditions. Less messy ones!. BUT, I’m still pressing on. I’ll never lie and say it’s a good day because I woke up or say I’m doing good, because as long as this is my reality, those are lies and I don’t lie. I do however fight, fight to endure and not give up.

Well, it’s been a full year for me not having my menstrual cycle. I’m officially in menopause at the ripe old age of 41, lol.

I began menstruating at the age of nine, so I’m not missing the aggregation that comes with it. According to my GYN, it’s not uncommon for women with autoimmune conditions to enter menopause at an early age. The body is basically out of whack.

I don’t enjoy the night sweats, but I appreciate not having that bleeding in addition to what comes with HS. Gotta be thankful for everything 🙏🏽

Here in the Philadelphia area, we face the issue of chemically contaminated water. This became public Sunday afternoon. All were advised to use bottled water for drinking and cooking.

Supposedly, initial testing shows the current water supply to be untainted, but to me, logic suggests that it’s only a matter of time before this changes and the water is no longer good for bathing either. This is what caused my anxiety. Would I be happy about this situation if I had a healthy body that wasn’t full of openings? No! But having HS under circumstances that would inhibit me from showering as I need to only makes this worse!

That’s where the empathetic ears and actions of my beautiful sisters comes in. I appreciated my sister, Leah, simply letting me know that she knew this situation was hard for me. My sister Lori gave me humor, allowing me to laugh at myself and the way I kick into survivor mode. She also very thoughtfully reached out to my cousin to check out of state for places that still had water in stock. That did a lot to calm me. I appreciate her, as well as him for getting it. Last but never least, my sister Lydia reached out and secured somewhere for me to stay out of the affected area if it came to that. Truly wonderful women in my corner 💞 Love them to the moon and back

I don’t know what this, or even the next situation will bring, but I know Jehovah will make sure I’m ok, as he did today 🙏🏽

I had my appointment with the pain management doctor today. My beautiful sister Lydia took me to and from and came into the appointment with me. 🥰🥰🤗❤️ The doctor prescribed a low dosage antidepressant that will serve to address the pain, a strong form of Motrin for when I have flares and a topical numbing ointment.

I’m to try this for two months with hopes that it’ll decrease my pain, before considering anything stronger. I’m hoping and praying for the best.

I’m thankful to Jehovah that my appointment was better than many I’ve had in the past. I left with some hope. I’m also grateful for the loving care of my sister and very very dear friend of 23 years, Liddy.🥰🙏🏽

just wish I knew who to thank. I received 24 boxes of my bandages I use today. There is no name or indication of who sent them. I’m hoping the person will let themselves be known so that I can express my genuine appreciation.

HS is an expensive disease because of all the items insurances don’t pay for. It means a lot that someone was kind and thoughtful enough to provide me with a nice supply of something that I literally have to use every day.

I personally try to look out for those I love and give when needed. The words of Luke 6:38 prove true, “Practice giving, and people will give to you. They will pour into your laps a fine measure, pressed down, shaken together, and overflowing. For with the measure that you are measuring out, they will measure out.”

I’m thankful❤️🙏🏽

I have a consult with a pain mgmt doctor on the 27th.🙏🏽 My goal is to get something for the pain caused by the HS in my buttocks. If they can give me something safe to minimize that, then I’ll be able to live a much fuller version of my life.

We’ll see what they say.

Today marks my five year anniversary of retirement from the City of Philadelphia, District Attorney’s Office!🎉☺️ How the time has flown.

I remain grateful to Jehovah that I was able to stop working as my circumstances dictated. I try to make the most of my situation and look at the various ways that this has been a benefit.

Life is in fact like a box of chocolates😉.. (And sometimes those chocolates are a bit rancid)🤣 however we press on and do our best with what we have.

The sponsor of my support group held a meetup this evening, and I’m glad I signed on. A dermatologist hosted, but it was an open floor setting. We were encouraged to share our story, what we use to cope etc.

I raised the question about pain management doctors and if anyone had gone that route for HS. Nobody had. I expressed how the pain in my buttocks was my reason for asking. I explained to the best of my ability what it feels like. WELL, at that time, one of the other HS patients told her experience that sounded exactly like me!!! That was the best part of the entire meeting!! OBVIOUSLY I’m not referring to another human being suffering, but to hear her say that the HS in her buttocks trumps the pain everywhere else and how tired she is of the wounds weeping and the smells, it was a big deal for me….. actually being in a moment where I truly wasn’t alone…VERY VALIDATING!

I was reminded of what a former coworker and friend once told me. He said that as much as he loved and cared about me and hated that I have this disease, the reality is that he’s still going to go to bed and go to sleep, and live life normally, that he’d never really know how I felt. That was one of the best moments of honesty I’ve experienced because it was so true!

The other reality is that there are people that understand exactly what I contend with, and tonight was proof of that. So glad we both decided to share.

After reading about its benefits, that include helping with skin disorders, this will be added to the natural supplements I’m now using(cinnamon, oil of oregano, tumeric, zinc gluconate and a multivitamin) . I also found a salve on Amazon that has Goldenseal in it. That’s on the way as well.

I had a derm appointment last week. Much of the same offered, outside of a diabetes medication she prescribed (Metformin)for the purpose of controlling blood spikes that can cause flares. I’m using the cinnamon for that reason. Unlike the Metformin, it doesn’t cause diarrhea, vomiting and other gut issues. I’m very blessed to have a healthy gut…I CERTAINLY DON’T NEED TO ADD A MESSED UP GUT TO WHAT I ALREADY CONTEND WITH! No thank you.

I’m going to keep watch on what results I see with the natural supplements. I’m hopeful.

I attended my Sunday mtg yesterday in person. I was happy to get there and even happier to be accompanied by my Lori and Devon. The interactions at the mtg were enriching and the time together in general left me feeling emotionally and mentally satisfied.

We followed that up with a good meal before returning home. It was truly a great day 🥰