Hidradenitis Suppurativa

At a time when many have lost and are losing medical benefits, I’m very thankful to have been notified that my Humira will be covered for the 2026 calendar year. This is no small thing and I thank Jehovah for this.

My sister Lori, working with insurance companies etc on a daily basis, advised me a couple times in the past months to make sure everything was set in place for my continued coverage. I appreciate this, because once again, nothing in this temporary but very messed up system is promised. However, I received my notification today.🙏🏾🥰 💉

I’m also thankful to have my little 2002 Camry still running for its momma. I was able to get her oil changed and tires rotated. I was due to bring it in the early morning hours on Friday, but they let me bring it Thursday afternoon. Lori followed so that I only had to utilize Uber once when picking it up yesterday and allowed me to rest longer. These are all big things to me. They cause me to reflect on the stabilizing, supportive and invaluable presence of those people that live out their lives in such a way where I know I can consistently rely on them…..EVEN IF I NEVER HAVE TO. I in turn strive to continue living my life by the highest standards of my God Jehovah so that I can do the same.🙏🏾

It’s been at least a year since I’ve purchased/eaten granola in my yogurt. I had a long run with the Bear Naked brand, but it began to taste too sugary to me. I was suspicious about how much sugar it actually contained. I then began using the Simply Elizabeth brand. It was okay, but I opted to leave it alone and only add berries and nuts to my Greek yogurt.

Today, I decided to make my own concoction. Something to give me that desired crunch and only containing what I chose to use. I poured some vanilla oat milk into a bowl of dry oatmeal, added cinnamon, nutmeg and a drizzle of my sugar free syrup. I baked this mixture in the air fryer until crisp and voila…my own homemade granola….yaaay me!👏🏾👏🏾

I lay here now, full of gratitude for my heavenly Father Jehovah! I’m grateful that he has allowed me to be able to do so many things in these past eight months that I either, wouldn’t have been able to do, would’ve done with great difficulty or would’ve just been too uncomfortable to do at all.

This new space allows me to feel great joy in seemingly ordinary things, that prior to now would’ve been very challenging!

Today I was able to do laundry at the Laundromat, browse in a thrift store I’d never been to before and get takeout for my family. Very recently, I would’ve chosen one or maybe even none of the three. I’m almost giddy reflecting on these accomplishments.☺️

Yesterday was special for me as well. My dear sister Lydia arranged for me to accompany her in cart witnessing, something I only had the privilege to do once a long time ago. Her enthusiasm for me being able to accomplish this was very encouraging. I felt like I had my own personal cheerleader.🥰🥰🤗🤗

Working backwards over the past couple months, I was able to extend hospitality to some friends in my sister Lori’s home and with her assistance. Again, something I hadn’t done in quite a while. Last week, Jehovah also gave me the strength to prepare a full meal for my family. That felt good.

Being able to do more socially and feeling a fuller effect of Acts 20:35 and 3 John 8 has enhanced my joy that has resulted from finding an HS treatment that works. My heart is glad and I take none of this for granted.🙏🏾💕🥰

1. Heading to cart witnessing. 2. Today’s takeout. 3 My favorite… Ice from Wawa😁

The past five days were a wonderful time. I had the opportunity to host a get together at my sister Lori’s home. This was my first time entertaining guests in a long time. It was special for me, to be at a point where I had the strength and stamina to prepare for and host guests.

I appreciate my sister offering her home and helping prepare the food etc. The association with my guests was truly enjoyable. There is truly more happiness in giving, as is highlighted in the scriptures at Acts 20:35.

This was all enhanced by having time to talk, laugh, eat and just be with my sister. Some people honestly feel like a vacation, and she’s one of those people.🤗

By chance, one of our wee hour morning conversations led to a discussion of hoagies that led to me craving one. My plan was to try a spot that had good reviews before going home. I awakened and she had ordered hoagie fixings and made me a delicious sandwich…wow! What an awesome individual!

I’m full of love and gratitude. Can’t wait till next time 😘💓💓

I was fortunate enough to have an enjoyable weekend away with my sisters. Despite all we’re contending with in our individual lives, we were able to keep to what has become our yearly tradition.🥰🥰

It was very satisfying to have some uninterrupted time to talk, enjoy some meals together, thrift shop and watch movies. I stand by the truth that not much is needed when you’re with the people that matter most!

This getaway was special for me, because it was my first getaway in many years, not being weighed down with the burdens of pre-humira HS.❣️❣️🙏🏾🙏🏾👏🏾👏🏾While obviously not perfect, there was definitely a notable difference in my comfort level and stamina.

In years past, my sister Lori typically would quickly disinfect whatever room I stayed in, make my bed and set it up with my underpads etc. This time around, I was able to help disinfect, wipe down my room as well as the other rooms in the house, without feeling exhausted. I’m very thankful!

I really had a moment of reflection when it was time to pack up and leave. I packed up my things and took them out to the car, but as a welcome change, I was also able to load some of my sister’s items as well! This made my heart smile.🥰🤗🤗

I’m proud to say, that though living came/has come to look different for me because of HS, even at the worst of it, I’ve striven to preserve as much quality of life as possible and I plan to continue in that vein.🙏🏾🙏🏾

Plans to travel, joy of shopping and getting dressed, are among the things that gradually decreased for me over the past almost 16yrs.

Waking up, moving about, attempting to sleep etc, all in discomfort and disgust greatly impacted my sense of femininity, fashion, feeling clean, motivation and overall connection to the me I was once used to. I came out of the pandemic feeling that life outside my house, outside of my room, would be very limited. As a result, I not only gave away clothing items that were no longer comfortable due to HS, but I purged my overall closet as I felt a diminished use of a wardrobe. This was a stark contrast for a girl that loved clothes/shoe/makeup and hair shopping.

HS is a horrid disease. Life became a game of adapting and survival. Feeling cute, desiring fashion, being girly.. These things were replaced with managing leakage, bandages, bed underpads, pain pills, antibiotics, ointments and unpleasant odors. IT’S BEEN A LOT!

This year however, brought me to a welcome change. I began a weekly regimen of humira in March. Since then, my discomfort and drainage has decreased, I’m able to have reasonable comfort without pain meds, use less bandages, and as a result I can derive more joy out of life.

Now that I’m going out more, the feeling of wanting to get dressed, put outfits together and do my makeup is beginning to return. This gives me joy.

Life in this passing ugly world will always require more effort for me to do the little things, but that doesn’t mean that I can’t make the best of what I have now, and that’s what I plan to do.🥰

Evolution to a lighter spirit. Can you see the difference from three years ago and now?⬇️

I’m happy that I was able to spend this past weekend with my Lo-rider, my sister Lori. It was what I needed in a time of juggling life’s challenges.

She’s someone I can openly and freely converse with and express myself without hesitation or reservation. I leave her feeling like we’ve solved the problems of the world, though nothing has changed.🥰 She makes me feel refreshed, even when we’re only discussing stories and experiences of the past. ☺️She makes me laugh, even when we each have loads of life that could make us cry.

The sister bond we have, is a space where I feel completely secure and safe. I love her with my everything and am thankful Jehovah blessed me with her love and care. 🫂

It was a blessing to attend the Sunday session of the Pure Worship Regional Convention today! Timely instruction and admonition, good association and the needed boost to keep enduring.

These last days are fraught with challenges and anxiety, but Jehovah never fails to remind us of his support and presence as we strive to press on in our service to him. Hearing the various invaluable nuggets of encouragement was a refreshment for my soul. Being surrounded by my sisters and friends that prove to be spiritual, emotional, mental and practical supports, filled me up emotionally! They aren’t just my cheerleaders in this race for life, but fellow runners that I can look to and lean on in these difficult times.🫂🫂🫂

I thank Jehovah for this beautiful and meaningful day.

Well, working backwards,

1. I’m on course to meet my fifteen hour goal in the ministry for July

2. I’m looking forward to attending my assigned Pure Worship regional convention over the span of the next two weeks

3. PCP, derm and now hematologist are looking at my blood work to try to figure out why some of my liver enzymes are high,(speculation is humira)protein in blood high and iron low. The Hematologist believes that my body is under a lot of stress due to HS even though on medication as well as anemia, and therefore may be trying to balance itself out and therefore being reflected in some levels being off. I’m scheduled to resume iron infusions week after next. I had a series in 2022 with a different hematologist who didn’t believe they were having any effect, and wanted to do a bone marrow biopsy to rule out a certain cancer. I never agreed to this painful procedure and discontinued care with her.

The hematologist I saw yesterday wants to try to do somewhat of an elimination process, and see if I respond favorably to the iron infusions before going further into speculation about what’s going on.

4. I was able to get together with my sisters to acknowledge my nephew some weeks back. We had lunch, and had the opportunity to express how we appreciate his way of showing up and assisting in his family and community. I enjoyed planning for and attending this occasion. I spent the week following with my sister Leah, and it was nice having some quality time with her.

5. I resumed my therapy sessions two weeks ago after a bit of a break. It was good to unload.

6. I’m focusing on building my faith in Jehovah as life gets more challenging and these last days show themselves to be everything Jehovah told us they would be. I’m also working to take what I learn from the scriptures off the page and apply them in my day to day life…. Not being anxious, treating others as I want to be treated, trusting in Jehovah’s protection no matter how bleak things may get, and surrounding myself with those that give me positive energy and reinforcement….the spaces where I know and FEEL that I’m a priority and that my complete well being is considered and accommodated.

That’s me in a nutshell for now🥰

Hello all! Allow me to catch you all up on the events of the past week.

My mom expressed last Wednesday that she was feeling unwell..achy, chills and headache. My non- medical diagnosis was stress. Stress from caring for my father with dementia, stress of extremely bad knees etc. My nephew, brother, sister and I went about individually doing what was needed to look out for she and my father.

Friday morning, I awakened with a griping stomach and loose stool 🤔 I didn’t know what to attribute it to. By Saturday, I could feel congestion in my head and was once again revisited by stomach griping and loose stool. DING!💡 Inflamed sinuses. It occurred to me that the dizziness was due to inflamed sinuses and the drainage was causing my stomach to be out of sorts. Ok, at least I know what’s going on. I have a bout with my sinuses just about yearly, but not to this extent. I started with my remaining sinus meds, tea etc., and my sister bought me some Sudafed and made some chicken and vegetable soup.🙏🏾

Well, by Monday I’m experiencing shivers and then again yesterday… clearly a fever…oy! Talking to Lori yesterday, she reminded me that a good part(I believe the doctor told me one third) of my immune system is completely inactive with the humira. This was helpful since I’m sure I’m still yet to see all of its effects. I am happy to say that I feel noticeably better today. I’m not as wonky in the head and my stomach is tolerating more foods. Yesterday, my sister Lydia and baby brother Tony brought me some sushi and ginger tea.😋 I ate all the wasabi and ginger and I definitely think that contributed to me feeling better today.

So there you have it! Stay tuned!😉