Author: hidradenitisandme

“There is more happiness in giving than there is in receiving”

These words always prove true! I had the privilege to honor these two young men, my nephew on the left and former coworker on the right this evening. I wanted to express my feelings of pride in the way they comport themselves as young men, in particular as young black men! Living, breathing examples of what intelligence, dignity and determination looks like! Media would have you believe they don’t exist, but indeed they do!!

It makes my heart happy to see them realize how they’re valued!

Truly a blessing and some of the best medicine there is, to think of and do for others!

Good Friday evening!

I hope you stayed warm and dry today. There were flurries and a drastic drop to the 30’s. We were in the 60’s yesterday! Sooooo strange.

Fortunately, I was home. I decided yesterday evening to use a sick day. I ordered a tube top bra. I thought it may serve my purposes, since I’ve worn some tube tops without problem.(In hindsight however, I cut some of them in such a way that they wouldn’t press the very sensitive skin on the bra line)..I haven’t worn a real bra in years since HS, primarily because I’m not much into self-inflicted torture! LOL. I dress in such a way to remain modest without the pain…..gotta be creative!

Back to the story… I wore this new tube top bra to work yesterday and somewhere around the two o’clock hour, I realized that there was noticeable pain, primarily on the left side on the bra line. I made a bit of an adjustment, attempting to pull it below that area, but my 4:30 walk to the train was quite memorable, and soooooooo reminiscent of the days prior to me coming to the realization that I could no longer wear bras. WHEW!

Compacting that, I began to feel foggy in my head and a bit sick. I attributed this to my body reacting to the pain. After getting to my car, I pushed through to go to the store so that I could make the cheesesteak I was craving. When I parked on my street, I sat in my car for about five or six minutes, as I felt too tired to move. It wasn’t until being hit with a headache, that I realized my sinuses were the cause of the sick feeling. I was able to remedy this with some sinus meds.

By this time, I tapped into some common sense, and decided to stay in today. As for the tube top bra, I’ll do some alterations and try it when I’m just in the house. ….Trial and error my friends.

Good Tuesday morning!

Back at work today. I’m in good spirits. I was able to get up, shower, dress and make it to my train with minimal discomfort. What a blessing! !! Do I know what to attribute that to? Nope! My suppliments perhaps. I’m just thankful.

Staying home and resting yesterday, may also have something to do with it. No stress from the hustle in bustle. I must say,  it’s fulfilling to take care of yourself and listen to the dictates of your body! I’m going to stay the course and do what I need to do for Loni’s wellbeing.

That’s the only wise thing to do since I’m the one living in this body, don’t ya think?! 🙂

Have a great day all! Ttys

Good evening dear readers!

I’m closing the day thankful and content because of being blessed with a good family. I had a couple friends over for lunch today, and my family was so helpful with both the preparation, during the visit and after. They are awesome people!

They went above and beyond to lend assistance, being aware of my limited energy and stamina. Because of them,  I was able to experience the joy of opening my home for hospitality, something I haven’t done in quite a while!

Thank you all! I’ll go to sleep with a smile in my heart, knowing how loved I am. Wouldn’t trade you all for anything! ♡

Whew! It’s Friday thankfully! Hopefully you’ve all had a good week. Me, I’m tired😴😴😴😴. I don’t actually remember when I last came to work all five days, and to be totally honest, I can’t tell you when it’ll happen again! I’m drained. I’m thankful that I made it, but it’s evident how taxing on top of everything else, it is for my body.

I put in for a vacation day Monday. That’ll be wonderful! I’m going to rest. I’m at my desk now with my heater on.  It relaxes me, thereby calming my nerves and decreasing the discomfort in my body from the morning rush.

As an update on the zinc and vitamin a,  I’m actually unsure if it’s doing anything at this point. I pray that it will though. It seems like the hole in my right arm is closing some which is good.

Stay tuned 🙂

Good evening everyone!

I hope yours was a pleasant day. Pretty damp and dreary in Philadelphia. I’m so happy to be home.

My plan is to turn in early tonight. Sufficient rest can never be emphasized enough! I’m also going to schedule a few days off in the weeks to come. It honestly provides a great push when you know you have some time away from the daily routine to look forward to!

Anywho, I’ll talk to you all soon! Have a good evening.

Howdy all

I’ve been home from work for a few days nursing a flare in my right arm.

It’s the hole right above where the skin is peeling. It’s much less feverish and inflamed, but still not pleasant as you can imagine.(I hope the visual isn’t too much for anyone ),it is however a part of my transparency in not hiding my reality.

So, I’ll see how tomorrow goes. Definitely won’t push it if my body isn’t up to a full day.

I hope you all are well. I’ll check in soon.

Good evening all!

Hope you were able to enjoy what was a beautiful day! Perfectly pleasant weather!

So after getting the OK from my doctor, I ordered some vitamin A and took my first pill about 3 hrs ago. Vitamin A is the primary ingredient in the drug Accutane, which is prescribed for people with extreme acne. Hidradenitis Suppurativa has also been called acne inversa. A very extreme form of acne. The similar attributes being clogged pores and the forming of pimples in the case of typical acne, but boils and cyst with HS.

With that being said, the vitamin A works as a drying agent in the body. The goal in my case is for it to help dry up the pus in my body as well as the production of it(Suppurativa means pus producing). This would decrease the inflammation and secretions.

As with any drug or supplement, caution is necessary. Too much vitamin A can cause liver toxicity or osteoporosis if taken for too long or in high doses.

I’ll be remaining in tuned to my body and taking it as prescribed. I’m definitely excited for the posibilty of improvement!

Stay tuned!

Good evening all!

Realizing without a doubt that writing is a comfort for me, I wanted to share a poem I just wrote. It’s called ‘Move With Ease’.

🙂

move-with-ease

Good evening to you!

Hoping you had a pleasant Monday!

I titled today’s blog “face to face”, because of a great idea my friend Bridget proposed. She suggested that I reach out to my online support group, and see if there were any fellow Hidradenitis sufferers in proximity to me! I think it was a very good idea! It’s definitely helpful communicating on the online support group, but I think it would be great to come face to face (for the first time ever) with someone that truly, genuinely and sincerely understands the physical, mental and emotional components of this disease! No explanations necessary. ..just pure understanding.  That would actually be really awesome!

Soooo, I followed her suggestion. There have been a few replies, but no one in the area yet. We’ll see what happens.

If you’re interested or curious, it’s dailystrength.org. The group is Hidradenitis Suppurativa obviously. You can see what others besides myself face in coping from day to day. My name is ‘Mufaris’ on the site.

Thank you for your suggestion Bridget! Love you!