Author: hidradenitisandme

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!😉

I know this to be true, but Jehovah continues to show me how true to his word he is!

Backstory: My check engine light came on three weeks ago…ugh! Truly always something! I started figuring in my mind how I’d deal with this, and decided to save some funds to have it checked out at the dealership. I expressed this to my sister Lori, who informed me that a friend was now running his own car repair business.

Long to short, he came out to assess my car and determined what was needed. He scheduled to do the repair yesterday, but the part was delayed in shipment.

Although he assured me that it was fine to drive, I’m not a fan of having loose ends in any aspect of life, and that little light made me feel less than secure.

That brings me to this weekend. My two focuses were to 1. Get out in in-person ministry today, and 2. To take my father to my mtg with me tomorrow. I decided to put all my trust in Jehovah and proceed with the plans.

I got up and got ready…. Got in my car and turned the key…NO CHECK ENGINE LIGHT!!!😃🙏🏾🙏🏾🙏🏾 Now, does the part need to be replaced still…OF COURSE! But do I know that my loving heavenly Father wanted me to be focused on my ministry and association,,, not the car?? I SURE DO!!! Jehovah is sooooooooooooo AWESOME!

Guess when the light reappeared. When I was back in familiar territory, not far from home.. and not sweating it! 😊Jehovah tells us to taste and see that he is good! (Psalm 34:8)… I’m so thankful that I’ve been able to do this.

I made a thrift store run to the thrift by my home after parking and then went to visit with my sister Leah, who whipped up some of the best tasting tuna fish I’ve ever had!!🐟🐟I enjoyed her and my day. THANK YOU JEHOVAH!

Today was a very good day. 🙏🏾🙏🏾

It was my mission to go out in my ministry in person. I’m happy to say that I wasn’t deterred, even after having my check engine light come on yesterday.🙄

I was quite unhappy to see this, particularly since I just had work done two weeks ago. It came on as I was taking a family friend on an errand. I initially felt anxious. I then just prayed to Jehovah for him to allow me to drive to my kingdom Hall today, to meet for field service and get back home safely.

He truly took care of me! After arriving, my little brother arranged for my field service partner and I to ride to the territory with he and my sister. It worked out so well, because the territory was a distance away! After we were done, we went and had a very tasty lunch.

They brought me back to my car and I made it home without incident. It means so much to experience Jehovah’s blessings, especially when you realize that he’s taken note of your efforts. The quality time with my people left me feeling full in the best way!🥰🥰❤️

Jehovah’s hand is never short.🙏🏾

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.🙏🏾❤️