My name is Loni. I'm 44 years old. I've been suffering with the disease Hidradenitis for 17 years now. This blog is my way of sharing what many sufferers choose to hide.
I met my 15hr goal for increased field service activity for the month of February!๐
I’ve set the same goal for the months of March and April.,๐๐พ
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.๐ฅฐ๐ซ
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.โบ๏ธ
This Tues will be my first Humira injection. Hoping and praying for the best possible outcome.๐๐พ๐๐พ๐๐พ
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.๐ฅฐ๐ฅฐ๐ฅฐ๐ฅฐ๐ฅฐ
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.๐๐พ๐๐พ
Additionally, this appointment is unfortunately coinciding with the eagles parade and Valentine’s Day. About a million people are expected in the city. ๐ 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:
Timely
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.๐๐พ๐
I was able to kick February off in the ministry yesterday. I have a fifteen hour goal for the month that will be balanced between in person and zoom ministry. It was enjoyable getting started in person with my sister Leah โฃ๏ธ
After some errands, we went back to her place for some association and ๐. She was expecting a few guests and it was a nice time for all.
Getting to my meeting today rounded things out to what I feel was a fulfilling weekendโค๏ธ
Can’t believe it’s been an entire week since spending the weekend with my sister Lori. It was enriching as always. She arranged everything for my comfort and enjoyment. I ended up spending time with both of my sisters which was an added bonus.
Sadly, one of the agenda items last Friday was to sign onto the memorial of a friend on zoom. Fast forward to this Friday, with us learning that a very dear family friend died last night.
You really don’t know from moment to moment what in your life will change or how. It’s important to let our loved ones know that we love them. Tomorrow isn’t promised.๐
Today was a day where I was able to accomplish all the things I set out to do.
Retrieve some grocery items my sister Leah kindly bought for me.๐ฅฐ
Retrieve an Amazon delivery with multiple bulk items in it.
Warm-up, clean the snow off and move my car closer to my house.
In anticipation of this, after showering, I fully bandaged and clothed myself, whereas I typically wear a self altered Tarzan/Jane dress around the house so that my wounds can get air.
I also plan to shave my head after I get back up from resting. I thanked Jehovah multiple times for fortifying me and allowing me to do what I needed. I feel accomplished and thankful.๐๐พ๐
Met with my sister and her congregation for their meeting for service with the visiting speaker… Went into the ministry for a little afterwards.
While out I received a call from the office of a dermatologist I’d seen in the past to schedule an appointment regarding Cosentyx. She’s the HS dermatologist specialist for the Philadelphia region. I’ll be seeing one of her associates on February 14th. This follows a very frustrating back and forth with another dermatologist that failed to provide the financial assistance agency/pharmacy with the completed paperwork to execute the script.
I made the prayerful decision to see someone else after getting nowhere for many weeks. Prayerfully things will go well. I’m not a pessimist, but have learned to just stay tuned for what happens next. There’s always a hiccup of some sort in this life.
I arrived home this afternoon and fixed myself a turkey burger and baked sweet potato, as well as a turkey meatloaf for my h household. Thankfully I don’t feel exhausted, but I’m quite glad to be relaxing and to have nothing scheduled to do tomorrow. I feel accomplished for the day๐
It’s really awesome when you have a getaway that proves to be all you hoped and prayed it would be. A few days by the ocean with my sisters and friends was truly needed.
We talked, ate, played games and simply took advantage of some time away from the day to day. My focus was to use that time to do exactly what I wanted to do. I hung out and went out, but I also rested when needed. Sometimes we allow ourselves to be pressured to do what everyone else is doing…NOPE, I wanted everyone to walk away having done exactly what their heart desired on their vacation! This made for a great getaway! I didn’t want it to end, but will simply look forward to the next time๐ฅฐ
I made plans with someone in my new congregation, early this week to do in person service and lunch. Since that time, I was debating whether or not I would do today’s Sunday mtg in person or on zoom.
After an enjoyable and fulfilling day yesterday and thankfully not feeling worn out, I decided to prepare to be in person. Meanwhile, I also put an instacart order in so that I could make some white chicken chili… something that I had a taste for, and figured could stretch a few days. I chose the 11-1 timeframe for delivery, thinking that it would likely arrive in time for me to receive it and make it to my mtg on time.
….so there’s the backdrop and here’s how things turned out.
First, my night wasn’t at all restful. I tossed and turned for a good part of the night/early morning …. Hot/cold, adjusting and readjusting the pillows I sleep propped up on etc.๐ I awakened feeling that I may take the zoom route, but yet and still, had a desire to go in person still with me.
I got up and proceeded with my customary prep, just in case I decided to go. It looked as if my grocery order would come in time for me to do so. In the midst of watching my tracking, I see that my order was reassigned and would now be coming at the time I would need to be leaving. My sister Leah text me around this time to check my status. I told her I’d likely be staying home due to the instacart hiccup.
While laying here calculating how much time I’d have to get fully dressed if my delivery were to come in time… The tracking app all of a sudden changed to an ETA of 6 MINUTES! My mtg starts at 1 and it was only six minutes after 12…. At this moment I felt like Jehovah was saying, “I want you to go.”๐ฎ
I quickly got up to finish dressing, brought my groceries in and made my way to the hall. IT WAS GREAT BEING THERE!!! The discourse and association were very enjoyable.
I arrived home and started on my dish right away before the motivation and energy slipped away. It turned out well.
I know Jehovah allowed this day to go exactly as it should have. I remained prayerful about what I should do, and he worked it out. I must say and highlightย the icing on the cake for this day were the very encouraging words from my sister Lydia. “Thanks for allowing Jehovah to help you be used as a hero to us and many others.”
I don’t consider myself to be a hero, but those words of encouragement definitely gave me extra wind to fly to and through another day. A seeming comedy of errors turned into a good day….. I’m thankful๐๐พ
Met a friend for lunch in center city, shared in my ministry online, had people come do cleaning in the house, did my online shopping for household groceries, caught up on zoom with my out-of-town sister, went in person to my mtg today and fixed a pot of soup after…….
In between what’s stated, is the receiving of package deliveries, room tidying etc. Even though I’m noticeably more tired than usual, I appreciate Jehovah giving me the strength to keep living instead of simply existing.
As for stand out moments, it was really something to go to what was once my favorite restaurant (Maggiano’s) after sooooooo many years since I’d been there. It was honestly a weekly lunch spot during my working days. Those that knew me always suggested and even treated me there for countless lunches.๐ My family and I would even go there on a whim. Those were days of my zipping all around center city. The below pictures however, are the Loni of today, standing on her old stomping grounds,(waiting for her Uber)anticipating getting back home…lol
And fun fact of the day, well not really fun, but a fact nonetheless ๐ before today, I hadn’t made soup since early on during the pandemic. Back then I was making it quite a bit. Today’s soup was a chicken/turkey vegetable soup. It turned out pretty well.
So what’s next on the agenda? Me bidding you all a good night on this lay-low-Monday eve.๐๐๐พ๐ด