Author: hidradenitisandme

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!

Hello everyone!

I hope your Saturday has been pleasant! This was a good day. My body was noticeably less sore, and I can’t stop thanking my God, Jehovah, for blessing me with a good day. Is the zinc  beginning to work? Perhaps.  I’m still hesitant to make that claim :). What I do know, is that even after going to my meeting at the kingdom hall and the market, I was actually up to doing a little cooking. That’s not the norm. I’d  typically crash shortly after crossing the threshold.

So yes, I made shrimp in a white wone sauce with garlic, onions, mushrooms and parmesean cheese over edamame pasta (pasta without the carbs). It was pretty good. I’m now relaxing and reflecting on how blessed I am for all of you offering words of encouragement and supporting my blog. Can’t help but to consider how my joy over this new hobby and the feedback I’ve gotten, is likely contributing to my overall well-being.

Thank you all again!

Thank you all for being so encouraging and supportive of me!  I’m very happy to share with you!

Have a wonderful Friday and enjoyable weekend! 

Snowday for the office! I’m so happy!

Such a treat to be able to stay home and relax. This marks the third day of using a suppliment I’m excited about. It’s called zinc picolinate. I read a few good reviews about its effect on HS. My beloved nephew is excited about it for his aunt as well.♡

I mentioned to him Wednesday that I’d gone the morning without taking pain meds. This is unusual and made us both very hopeful for this product. He asked me Thursday morning if I had the need to take meds. I didn’t want to admit it to him, but I did. This though,  I attribute to the fact that I didn’t remain upright while sleeping. You see, I have to sleep upright so that my armpits can drain properly. Gross, I know.I use bed pads to protect my bedding.

Sooooo, as a result of not remaining upright, all that pus and junk gathered in my armpits setting me aflame…yeah!

Nonetheless, I did get relief and having the day off was great. Hope you all remained warm and safe.

Good morning all!

Hope you’re well! I had a session with my therapist last evening. It’s amazing how much good talking can do! You come out with the same issues you had going in, only now you’ve given air to the thoughts and feelings you may have otherwise had suppressed or bottled up. Such a wonderful release!

She discerned that I was struggling and still somewhat worn from the rough past couple of weeks I’ve had, so we discussed that in detail. Therapist are wonderful because unlike some well meaning people, they don’t try to force you to be okay when you’re truly not. Don’t you hate when your honest expressions of perhaps not feeling well or being in the grandest mood are met with a “just think about it this way” or are glossed over altogether as if it’s a crime to admit that not all in your life is going as you wish? While keeping prospective and working to be positive, WE HAVE TO BE ALLOWED OUR HUMAN MOMENTS!!!!!

I encourage everyone to seek out a therapist. None of us are without problems or issues.

Anywho, I’m at work now. Until later 🙂

Good Monday morning all!

Got up a bit earlier this morning in order to take my time getting ready. In an effort to be proactive,  I ironed last evening to shave time off needed in the a.m., so I feel good about that.

Have you ever heard of cortisol? I certainly hadn’t until about a year ago. They call it the fight or flight harmone, or stress harmone.

Well let me tell you, I’m verrry well aware when it’s heightened in my body. I typically feel it in the morning when I’m trying to prepare for work, and let me say WOW! I’ll explain.

My morning routine is long and tedious. After showering, I have to apply various ointments to my nonstick bandages, and then tape the bandages to my armpits to keep my secretions from staining my clothing. I use six nonstick bandages in all. During this morning process, my subconscious is telling me that I’m on the clock and need to get out of my house and to the train. THIS IS WHERE THE CORTISOL COMES IN! During that time when trying to bandage, dress and groom myself, my nerves often go on edge. It makes me feel like there are a million pins being stuck in my armpits.

Though dressing, bandaging etc. is never easy for me, it is less egregious when I’m not rushed…..sooooo, yay for preparing the night before. I’m going to work to keep it up 🙂

Dear reader,

I have created this blog with the primary goal of telling you about the disease Hidradenitis Suppurativa, what it is and how it effects my life every second, minute,hour, day, week, month and year since I first began suffering with it in 2008!

Hidradenitis Suppurativa or HS, is a disease that effects the glandular areas of your body. That would basically the groin, armpits and area under the breast. Simply put, those glands that are supposed to help you purge dirt and bacteria, become clogged and cease to work. This causes the pores in those areas to become clogged creating cysts or boils. These are feverish and extremely sore growths that form nonstop.

There are three know stages of this disease. I’m in stage three. This is the point where tracts have formed under my skin causing constant secretion of pus and sometimes blood. I experience this in the concentrated area of both my armpits…a painful and draining ordeal….no pun intended :).

So, those that know me, love me and have seen my struggle, wish to be comforting and understand of my feelings. The truth though is that they will never truly understand, and that can be frustrating. What I will do here though, for those of you willing to take a look into my life, is share as honestly and candidly my feeling, thoughts and experiences. Yes you my friend, will get an up close and personal to the unspoken side of my life with HS.