Hidradenitis Suppurativa

Life truly is an emotional rollercoaster. I’ve felt that more in the past couple months than any other time in my life.

Raw emotions have rushed in, followed by efforts to reason through matters in a practical and more importantly, Christlike way… frustrations have arisen, followed by a realization, that sometimes all that’s needed is empathy and the same kindness and understanding I desire for myself…. The result…PURE EXHAUSTION..lol

Figuring out how to navigate life, be there for the people you love and balancing all of that without neglecting the necessary self-care is a big job. What I plan to do is remember and implement Matthew 6:34 that says, “So never be anxious about the next day, for the next day will have its own anxieties. Each day has enough of its own troubles.”

For me this means, be the best person I can be, support the people I love and take one day at a time… this will look different day by day, but THAT’S THE PLAN! I trust that Jehovah will help me and bless me for this🙏🏽

In this time where I’m trying to make it a practice to count and reflect on my blessings, my beautiful sister Lydia is prominent in my mind.

Ours is a friendship of 23 years…a TRUE friendship. Having someone to do things and go places with is great, but having someone in your life that you trust, that encourages you in your service to Jehovah and in life in general… someone that truly has your best interest, that you can talk to from the heart and that in turn shares their experiences and emotions with you, someone I literally never tire of talking to..this is something invaluable! This describes my Lydia 🥰

Being aware that I haven’t and won’t go into a nail salon since the pandemic, she in her spirit of self-sacrifice, came and did my feet for me today. Her life is full of responsibilities and things to do, but showing her true love for me, she took the time to come and give me some pampering. I’m so blessed to have her as my sister and friend.🙏🏽

Tomorrow will be my first in person therapy appointment since covid. My therapist requested it. We’ve been having telephone visits, so it makes sense for her to want to see me in person.

Our discussions are open, honest and organic not orchestrated. However, if I had to put in a nutshell some of what I’ve been feeling and will share, is that in this world of HS with it’s limitations and challenges, I feel like a miniature person in a great big world, reaching out for things, but too small and exhausted to actually reach them. I get an idea of something I want to do, but carrying it out turns into quite another story. And while it feels that everyone else is going through and living their lives, I feel like I’m yelling in a voice too small to hear, “Hey, wait for meeee!!”

This feeling is most prominent when I attempt to engage in things that used to be my norm, but then I’m left exhausted, in pain or just opting not to do them at all. As I strive to fight to have a fuller life, this realization is ever present. Despite this, I keep pushing. I’m sometimes left in disbelief of present life compared to what and how it used to be, but with all I have, I’m striving to focus on what I can and what I am doing.💪🏽

I’m now working to put my energies into really keeping myself fed and upbuilt spiritually. Reading, watching and listening to the bible and bible based videos and recordings, so that I can focus on it’s message of the kingdom that will bring my suffering to an end. Sometimes I end up mentally drifting and staring off as a myriad of thoughts go through my mind, but this goal is one I’ll persist with. It’s crucial to me maintaining at this time in my life. And while it doesn’t take away my problems right now, it is helping.🙏🏽

I’m thankful for my support system. I’m blessed to have people in my life that are unquestionably there to help and have my back. Not everyone can say that, so I don’t take it for granted.

An integral part of my support system are my sisters. They are awesome! I love them effortlessly.

My sister Leah accompanied me to and transported me from the car shop last week to have some work done. Without any hesitation, she lovingly took me back to retrieve my car today and then treated me to lunch. She didn’t have to do any of this, but like the caring sister she is, she did.

Life in this world can take so much out of us for a variety of reasons, but having awesome people in your life, like my sisters, makes it easier to bear. I love y’all to the moon and back 😘

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.