Author: hidradenitisandme

I was fortunate enough to be able to have a sisters weekend with my two sisters last week. It was a needed change of pace and scenery. Spending time with the both of them is always a joy, no matter what we do.

I’m especially touched by the care they both took of me, anticipating and jumping in to help with whatever I needed. I’m self-sufficient by nature, but truly appreciate the assistance when my body is uncooperative, primarily due to HS fatigue. And it’s not just what they did(making my bed, fixing my plates, doing my hair) but HOW they did it…never hurried or impatient, but lovingly.

My sisters are a blessing! It didn’t take the past weekend for me to realize this, but it was really nice having time to appreciate it even more 😘🤗

I was able to get out and get some air today. It’s super easy to stay in bed, but a trip to the zoo gave me the chance to get some exercise and a change from my norm.

I chose to have a pic taken in front of the sloth, as it’s the representative for Hope for HS, the support group I belong to. The sloth is a reminder to us HS warriors that we need rest and have to move at our own pace. We do ourselves good to respect both of these realities.

I’m thankful for this day☺️

Random observation…but I find it almost amazing the amount of trash I produce every day. Before all my gauze, pads, underpads and medical tape get used, it’s like this:

Sooo, with the renovation of my bedroom, I needed to purchase a new trashcan. Sometimes I’m mildly amused, but more often dejected by how HS demands that I compromise girliness and femininity for functionality and practicality. So no cute little fancy trashcan would do for my purposes, but I found something that would work. So there you have it.

Long to short, this certainly isn’t a matter I lend a lot of consideration to, but in keeping with the theme of this blog, it is a reality of my life with HS…. Therefore, I share😌

I went downstairs several times in my mind this evening, and made myself some tuna fish….yet I haven’t moved…lol. I’m not famished but had a taste for it.

Monday’s are a lay low day for me, and today I’ve done just that. No clothes or bandages on Mondays. Today was lots of drainage from here there and everywhere and bleeding from my abdomen. Mentally and physically draining(pun expected)😁 to see and feel. So instead of pushing to do something that can honestly wait, I checked in with my body, and it clearly wants me to just leave it be.

Tomorrow is another day. According to my routine, I’ll get up bathe, dress, engage in my ministry and yes, make my tuna.😄🐟 Interestingly, as it goes with HS, I’ll feel physically just as I do, or much as I do now, but I know that as always, Jehovah will give me the push to push.😍 He’ll help me ready myself to get prepared for my ministry that gives me so much satisfaction despite any pain or discomfort.

So yes, the bed won out today, and HS is tough, but with strength from Jehovah’s Holy Spirit, I’M TOUGHER!💪🏽💪🏽💪🏽 Another day awaits…

The gift that keeps on giving – This describes my nephew Devon. I fell in love with the little three day old baby that I held almost 28 years ago, and that love continues to grow to this day.

Small, cute, funny and a product of my beautiful sister Lori, how could I not love him?🤷🏾‍♀️ But far beyond that is the man that I truly adore today, not just because he’s mine, but because of all the qualities and character that embody him as a person.

Devon is authentic, caring, emotionally honest, discerning, in tune with others, practical, generous, thoughtful and through and through a quality individual! I truly adore him.

This little boy of my heart has brought me joy and even laughter when I was contending with flares, frustrations of HS and even accompanied his aunt to a dreaded GYN check-up for support.(Hope he doesn’t mind me saying that..lol) I can’t say enough about Devon, but he’s present in my mind for beautiful words of wisdom that he shared with me only a couple days ago, so never would I not expressed how filled with love I am for him at this time.

Devon is awesome and I’m so blessed that he’s my nephew 😍

Five years ago to the day, my little sister Bianca and I took a trip to Lancaster, PA for a little getaway. Reason number one, was to celebrate her graduating high school. Reason number two, was so I could have some downtime and a vacation before having fibroid surgery.

It was a very enjoyable and relaxed time away. We shopped the outlets, saw an awesome $4 movie (Me Before You), got great takeout, went to Shady Maple and slept. Perfect! Not a lot of bells and whistles needed when you’re with the people that live in your heart. I value memories like this with the truly important people in my life😍

I look at this pic and think of how awesome my God, family and internal makeup really are!!!

This was three days past the opening of the most troublesome and painful cyst I’ve ever had. It was located on my right upper abdomen. About three inches across and sat out more than an inch from my body. The pain was so intense, that when I stood, the gravity, caused sweat to form on my forehead. Any pressure caused horrible pain, and that included moving my bowels……yeah, imagine having to dread a natural bodily function.

As I said, that was a horrific experience… The worst single cyst I’ve ever had. But, when I look at the picture of me wearing my red celebration hair💁🏾….I feel proud to be me! Proud that despite the struggle and the pain… I’M STILL HERE! I don’t wither up, shrink back or give up, no matter how tough the going gets! I continue to fight, laugh, love and live and nothing will change that!

Yes, I have HS, but HS doesn’t have me! Nor any HS like situation that life brings my way… I’m a warrior and always will be!!💪🏽💕

I found myself in need of getting some air yesterday. I figured I’d run some errands and treat myself to some takeout.

While en route, I found myself in one lane to proceed straight, but opted to switch to the left turning lane at the last minute…..AND THIS WAS NO COINCIDENCE!!!!!!! As I’m driving along, I spotted someone that previously worked at my former job. As I focused in, I realized she was talking to my sister-friend, Ebony! We hadn’t seen each other in quite a while, so I was excited to see her. This led to me swinging a quick right and circling the block to catch up to her.😃 I pulled up directly across from her and waited to her attention ☺️ We both got out our cars and squealed with joy of seeing one another 🤗🤗

As it turned out, we were headed in the same direction, so I parked and got in with her. I have to say before going further, that as with any friendship, ours isn’t perfect and we’ve had our rocky times, but deep down, on the level that really matters…. We’re very much bonded! I love, know and get her and the converse is true. Very little need for explanation between us and sometimes not even words… we get each other. That’s a really special kind of connection ❣️❣️❣️

After a day of conversation and much laughter, I returned home with a smile in my spirit. I felt refreshed, enriched and very much assured of how loved I am! Reflecting on this and other relationships, I want to be mindful to allow for times of differing opinions and occasional friction. Those things need not color the relationships that matter, the ones where the good outweighs the bad and the love is real. And again…. I’m truly blessed 🥰🥰 Love you Ebster❤️

I am very much ready to be transported here😊.. granted it’s only the Jersey shore, but it would give me the fix I’m longing for. The sight, sound and smell of the ocean is incomparable!

I don’t believe this pandemic is going anywhere, but I don’t think that means that I can’t…..(with the right planning and precautions of course)🤔….I think it would be good for my physical and mental well-being.

We shall see.🌊🏖️⛱️☀️

This pic of my sister and I flashed up on my timeline today. This was taken five years ago at the Regional convention of Jehovah’s Witnesses at the Liacouras. Those were good memories ☺️

Now due to the pandemic, we’ll view our convention via streaming on jw.org. I’m thankful for this provision, but still very much miss the in person experience of these annual gatherings.

So yes, five years ago to the week…. perhaps we’ll capture a moment or two in this new normal setting📸😊❤️