Author: hidradenitisandme

I had a dental consultation today and zero motivation to go out. I was anticipating getting back home since yesterday. 🤦🏿 I’m oh so grateful to be back home in my room and bed.

Just removed 11 of the 14 bandages I had to get suited in to go out… Glad I don’t have to do that every day.

For the most part, even though I sometimes get mentally restless, desiring a “shake up” of my routine, I’m often more grateful to be in the environment where I’m realistically the most comfortable. I dream up some things that on the surface seem nice to do, but my body requires me to snap back to reality and remember my boundaries.

I made up my mind to get some sun and air today since the weather was forecasted to be unusually pleasant for this late in Oct…..a high somewhere in the 80’s and sunny.

I had the pleasure of meeting with my sister Leah’s ministry group, and doing door to door with her. Our time together, especially when doing this most fulfilling and important work, is something I ALWAYS look forward to.

This was followed by picking up some lunch and some quality conversation before I conked out and later came home.☺️😴🤗 It was a good day.

I have faint and sometimes no memory of the movies I’ve seen, places I’ve vacationed or restaurants where I’ve dined, but my heart never forgets the joy and satisfaction of being with those close to my heart, and today that was my Leah….love you sister face😘😘😘

HS makes no room, at least not the way I have it, for living a normal life I do my best to stay engaged with loved ones, remain active spiritually and be some resemblance of who I once was, but physical challenges I face every day makes this beyond challenging.

If I could change anything about this, number one would definitely be the burning, itch, leaking and pain in my buttocks. But a close second to that is the constant draining from the old wound on my stomach. The smell of the secretions vary from the smell of an unsanitary behind, to the smell of a dirty fish tank x 5. What person, woman especially wants to experience that?!

I especially smell this after removing my bandaging at the end of a day. I’m presently using tea tree oil to help with the odor. I don’t want others to smell it.

I’m fighting and have been for a number of years with this. Prayer and therapy are two tools I use. The loss of interest in most things is an unfortunate byproduct. It’s hard to focus when you have so much going on physically 😕..but I fight to be in the moment and not give all my joy to this challenging circumstance.

I’m in bed and draining from my stomach and upper abdomen as I typically do…. And here comes the smelly blood…. This ain’t the real life

Planned to attend a wedding and spend time with these beautiful ladies today..my sisters/my hearts. Interruption in plans as a result of fathers dementia mood change.

My Leah and nephew were self sacrificing in elder sitting so my mother, my Lori and I could attend. Love and appreciate them.

My sister time is a must… So looking forward to getting together with them soon

Today was a special day for me and the millions of Jehovah’s Witnesses around the world. It was the first day that many of us would be able to go out and share in our month long campaign about Almighty God, Jehovah’s Kingdom! So many pray for this kingdom to come as they see it at Matthew 6:9,10, but they don’t know the blessings they personally can have when this kingdom shortly begins to rule.

Sharing what I’ve learned and my personal hope regarding God’s kingdom is of great importance to me. For this reason I wanted to have a share in the ministry today as this month kicks off.

I originally made some tentative plans with someone to do letter writing on zoom today, but didn’t hear back from them. When I mentioned this to my beautiful sister Leah, she immediately invited me to accompany her in the door to door work!🥰 I so appreciate her coming to get me and helping to make my day meaningful 💕

After about a two hour nap, I feel content knowing I had a share in the most important work I could do…… THANK YOU SISTER FACE! I LOVE YOU! 😘

This was a good day for me. It started with the ministry, was followed by an encouraging afternoon with family and friends and ended with some time with my mom.

I’m thankful for truly wonderful people in my life. Despite any and EVERYTHING, the common thread is LOVE ❣️

With that I close my eyes and hope for a restful night 🥰

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 😘