Hidradenitis Suppurativa

I met with my HS support group Wednesday evening. The hosting dermatologist invited the patients that were signed on to speak on our challenges with the disease. When it appeared that others were hesitant, I briefly summery up its impact on my life.

There are very few males that come to these meetings, let alone speak up when they do. Well, when I finished speaking, the gentleman that was on spoke up and said that he was very touched by and appreciated my expressions.  This made me feel good.

Even if I don’t always take something away from these meetings for my personal use, it’s still fulfilling to be able to share with others and possibly validate their feelings. The reminder that you’re not alone in your struggle can make a world of difference.

Many people everywhere did laundry, got gas and ran errands today, without any thought. I on the other hand, am expressing thanks in prayer for Jehovah giving me the push, strength and stamina to accomplish these tasks today.

Unfortunately, my father is in the hospital with an infection, so my first run was taking my mom to the hospital. Following that I headed to the laundromat to wash my bedroom rug. This is something I’ve been wanting to do for over a month now, but just hadn’t mastered the push to do. Being that I haven’t been in a laundromat in a gazillion years, I had to leave right back out after arriving, to go to the Wawa for money so I could get quarters. While there I put gas in my tank and then returned to wash my rug, butt pillow and car back pillow.

On my way home, I stopped to pick up food from my sister that she had prepared for our household. I was happy to get home and settled, but felt good for what I had accomplished. Quite sure you know where yours truly can be found tomorrow. 😜

That was my day….YAY ME!

I’m thankful to have had the past week+ to spend time with my sister Leah.🥰 It’s really wonderful that our bond has continued over the years.

It’s notable that we’ve done a lot of traveling together, both in and out of the country.✈️More recent years have primarily consisted of our yearly trip to the shore. Even though life has changed and in various ways we’ve changed with it, the foundation of our sisterhood remains intact.

I’m appreciative and secure within my assurance that she loves and cares for me very much ❣️

Love you sister and look forward to spending more time in the near future 😘

I had a conversation with my sister today about eliminating dairy and wheat from my diet. This would be to see if would ease the effects of the HS.

My honest initial feeling following this conversation was frustration, sadness as well as being overwhelmed. After analyzing why I felt this way, I realized that the changes in diet that I’ve made up to this point, were largely to prevent flares and maintain. That in itself was and has been a HUGE and challenging adjustment. So nowwwww, looking at things honestly and realistically, I have pretty much been unwilling to explore what a more stringent diet could do for my healing or betterment.

Now however, it’s time to see what the elimination of these known offensive foods can do to give me more well being in my life. The honest truth is that recipes don’t excite me. Why? Because being in the kitchen is a dread, not a joy for me. That’s why things such as cheese, yogurt etc are easier to turn to. That being so, I know this process will require baby steps. Bagged salads, instant oatmeal etc. Prayerfully these changes will get me to a place physically, where food prep and other task won’t be such a chore. More energy and less discomfort I hope.

I’ll be taking this one meal at a time…. praying all the way.🙏🏽

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😘😘😘