Hidradenitis Suppurativa

It’s interesting how we can  sometimes take so long to live by or put into practice the things we’ve intellectually known for so long.

My energy, range of motion and stamina has been greatly decreased as a result of HS. I WANT to tend to certain things, and thankfully, many I do. However, the time it takes to do them is slower than most people.

I’m now forcing myself to realize that this is OK! I’m allowed to take my time, prioritize, reprioritize,😉 or even ignore some tasks that require more than I have to offer at a time.

I’ve been in the habit of overthinking and over-preparing for appointments and other matters, sometimes only to have someone cancel or arrive late. I then end up annoyed from all the preparation and energy that it took for me to be at the ready. I’m done with this. It’s time for me to take a breath, do what I reasonably can and not stress. I can’t expect others to understand all that goes into readying myself for the day or to show up for something, but I can honor my own limitations that I’m fully aware of by cooperating with my body and giving my brain a break

It’s time to move differently.

Without context, this picture wouldn’t mean anything to you, so allow me to provide the context.☺️

If you’re familiar with my journey with HS as I’ve posted on past blogs, you know that 1. Showering is my first priority when I awaken, and 2. That’s followed by my bandaging ritual that includes applying the various ointments I use.

Having said that, I spent the past weekend with my awesome sister Lori. She’s awesome in numerous ways, but especially dear to my heart is the way she’s so in tuned to my physical , mental and emotional struggle with HS. Her abundant care has made her understand how I think and function with this disease, and that’s invaluable to me!

Now regarding the pic above…… Sunday when I woke up, I made a beeline for the bathroom to shower. When I finished and came out, my Lori had arranged her bed with my chucks, bandages, first aid kit etc so that I could get myself together. Beyond that however, for my ointments that were running low, such as with this tube of ichthammol ointment, she took the time to roll it up so that I could get the remainder out with ease. WHO DOES THAT???!!!!! Hers is a heart bigger than I can actually comprehend. I’m so blessed to have her as my sister.

I Love you Lori😘

The opportunity to be with my sisters today was a blessing. Easy, funny, safe and comfortable.

I strategically prepared myself to have the optimal level of comfort so that they could enjoy me as much as I knew I’d enjoy them. It always goes back to those who are just worth it. Worth the time, worth the energy and the effort…. My sisters are worth it!🥰

Love you both and look forward to being together again soon ❣️

Someone that you think about and your heart automatically smiles, the person you can talk to every day and never grow tired or run out of things to say. The person you know undoubtedly is and will be there for you. The person you can tell anything and that in turn shares their life with you. The person that is so grounded in their faith and strong in character, that they give you the will to press on just by thinking of them. The sister you can’t imagine life without…

This and more sums up my sister Lydia. A woman who’s the epitome of goodness. She’s an ever present support and source of encouragement in my life. I’m thankful for our 23 year friendship that has blossomed into an unquestionable sisterhood.

Love you to everlasting life sister….

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 🥰