Hidradenitis Suppurativa

Contained in these bags are scarves and pashminas I’ve accumulated over the years. They’ve been in my trunk for almost a year now. Off the top of my head, I probably had about fifty….some I purchased and others that were gifted to me.

Their significance? Well, many things have evolved about me in this life living with HS, my wardrobe is certainly one of these things. When I was no longer able to wear a bra without pain, I began to explore ways to still be neat and presentable. This lead to incorporating the use of tank tops under my clothing, in addition to wearing scarves for extra camouflage.

The past 5/6 years have been a life primarily indoors due to my health and the pandemic. I largely resigned myself to the idea that a lot of my clothing was no longer needed. Among other items, I gathered most of my scarves and wraps with the plan of washing and gifting them.

Things are looking different now, and I will be keeping a good number of my scarves as I’m getting out more, but I look forward to gifting a few of them to some people at the Kingdom Hall.🥰

Knowing the story behind them, even if the recipients don’t, makes me smile and reflect. Onward and upward.🙏🏾💓

My sister Leah just text this to me. 🥰🥰 It’s an acknowledgement of my increased stamina and energy here in my sixth week of Humira.

Today I went to get the replacement lever for our toilet, took some pork roast, mashed potatoes and brussel sprouts to my sister and visited with her. I then returned home to install the lever, only to return to the hardware store because of not being able to disassemble the part. I was then able to return home and install the replacement part.😱

Less inflammation and less discomfort has been a true blessing!! I’m doing more with greater ease. This is something I didn’t see possible as recent as two months ago.

I hope and pray I continue to respond well to the medication. None of us know what tomorrow holds, but I plan to take full advantage of this present reality.🙏🏾🙏🏾

Three years, no period. GYN said in 2022, that HS had propelled me into menopause.

Well, after some achiness in pelvis yesterday and today, here in week six of Humira, I was greeted with bloody urine and a blood clot. Vaginal bleeding is said to be among the uncommon potential side effects. I’m now bleeding like a typical menstrual cycle.😠…not happy!

I have a call into the prescribing Dr to see what he says.

As anticipated, I greatly enjoyed my time in the ministry and QT with my sister ❣️ Sharing in the memorial campaign followed by her preparing a delicious breakfast(salmon cakes, toast, grits and eggs)was so satisfying and gratifying.🥰🙏🏾😋

Being with people you value most, doing the most important work there is and having a good meal, are the makings of a great day! The weather was perfect as well. I even went into the thrift store after leaving my sister’s. That’s something I used to do all the time, but no longer do.

I’m content and fulfilled.🥰🥰

Hello all☺️, I’m a few days past my initial humira injection two weeks ago. Tuesday made a total of four injections and my second one on my own. I’m glad to be building confidence in doing them.

Loved ones have been asking if I’ve noticed any changes. After taking a closer look, I have. 1. The drainage from the holes in my stomach and chest area has decreased. 2. (I’ll observe more closely) But I believe there is a decrease of inflammation in the lining of my groin. There appears to be less sensitivity there.

Now, what I’ve also noticed just in the past two weeks, but didn’t attribute to the new drug, is tooth sensitivity in the upper left side of my mouth. When I drink or eat anything cold, it shocks the nerves up there. I had forgotten that my sister Lori suggested that it may be the humira, until my sister Leah mentioned the same. After my dentist was unable to find any explanation for the sensitivity at my visit yesterday, I googled it and saw some post where other humira users had experienced the same thing. I’m going to follow the suggestion of using the sensodyne, to see if it helps.

Lastly, I’m now experiencing acid reflux. Something I haven’t had in years! This one is a no brainer for me. It’s the humira. I’ll mention it to the dermatologist so that I can get something to manage it.

So there you have it! All in all, I feel that I’m responding well, and as long as nothing manifest more serious than these issues, I’ll stay the course.

I did my first solo humira injection today! This makes the third dose. I was a little nervous, but it went well. I feel I’ll be more at ease going forward.

The injections are to be put in the front thigh or on either side of the belly button, alternating injection sites from week to week.

Continuing to hope and pray for noticeable improvement.🙏🏾❤️

I received my two starter injections of Humira yesterday, and so far no issues. My month supply arrived today. Next Tuesday will be my second dosage.

Thank you for your care, concern and prayers.🙏🏾💞

1. I met my 15hr goal for increased field service activity for the month of February!🎉
2. I’ve set the same goal for the months of March and April.,🙏🏾
3. This past Tuesday was my first in person on stage demonstration at the kingdom hall in six years. Though nervous, I got through and greatly appreciated the in person and virtual support of my family.🥰🫂
4. Though a struggle, I did in person ministry Saturday and attended my mtg in person today. I anticipated doing either or, but Jehovah helped me push for both.☺️
5. This Tues will be my first Humira injection. Hoping and praying for the best possible outcome.🙏🏾🙏🏾🙏🏾

Stay tuned 😉

My apologies. I failed to post the outcome of last Friday’s appointment and day.

As it turned out, the Lyft ride I scheduled so as to get to my appointment on time and avoid parade traffic, came only five minutes later than scheduled. I got in town about half hour before time. I checked in and was called back within five minutes.

The resident Dr. was nice and allowed me to show the affected areas that wouldn’t require that I unbandage. Praise Jah!! The clearly visible inflammation caused him to prescribe a body wash, topical antibiotic and oral antibiotic regimen. He also suggested that I try Humira instead of the Cosyntyx.

The supervising physician agreed with the assessment and treatment plan. The appointment went smoothly and I then headed to another floor to have the required lab work done.

I went back into the waiting area since I had a good amount of time before my sister Lydia was due to pick me up. I hadn’t been seated for long before she texted that she was headed to get me.🥰🥰🥰🥰🥰

Traffic wasn’t bad and I was truly appreciative of her self sacrificing love. I’m presently waiting for everything to be processed so that I can begin the medication. I’m thankful for how things turned out.

I have an appointment tomorrow at the dermatology office I was referred to some years ago. I saw the Philadelphia region HS specialist who wanted to put me on Humira. I was reluctant because of side effects and didn’t return.

The debacle with the dermatology office I visited most recently, caused me to set up an appointment with the previous office. I’m hoping to get completed paperwork and script for Cosentyx. My prayer is for a productive painless visit.🙏🏾🙏🏾

Additionally, this appointment is unfortunately coinciding with the eagles parade and Valentine’s Day. About a million people are expected in the city. 🙄 In an effort to avoid transportation issues, I’ve scheduled Lyft rides to and from. Again, I’m praying things go as smoothly as possible.

While doing my personal bible reading in Matthew, I came across this paragraph in a Watchtower article:

Instead of consuming myself with the what ifs of tomorrow, I’m working on strengthening my faith that Jehovah will have my back and allow things to work out in my favor.🙏🏾💕