Pain Marches On (A Quick Recap of 2.75 Years of Not Writing)

 I can hardly believe that I'm four months shy of it being 3 years since the last time that I have written. It seems I could do a better job of writing when the kids were younger and we were on a bit of "schedule". Now that everyone is getting older, enjoying their own interests, and going into different directions, I am not sitting down with my computer (or my thoughts 😐) as much. I am hopeful to change that a bit more.

How to sum up the past 3 years? I think I left off with a sleep apnea diagnosis and I was awaiting the sleep machine. Well, that was a huge bust. I slept so much worse with the machine than the disrupted sleep (or lack thereof) without the machine so I took it back. 

I began working at Spokes cafe in August of 2022, and after seeing a Paraprofessional job opportunity at Granger Elementary in October of 2022, I quit Spokes to go work at Granger and I loved that decision! I loved the students, my co-workers, and the environment so much. It felt so great to be back in the teaching environment again. I no longer felt inadequate because I wasn't helping out my family in a financial way, and it showed me how "strong" I could be working and doing the solo parent thing while Jim traveled. It felt great, and I was so thankful for a manageable season in my MCAS and POTS to be doing it!
 

When I went to the dentist in the winter of 2023 he told me "Run to the GI. You are having severe reflux damage to your teeth." So, that's what I did. My endoscopy concluded that I had another esophageal stricture (so I had a dilation), bile was pooling in my stomach, and even a few months later, the swallowing difficulty continued along with reflux. Dr. Bashour told me to keep taking meds, because that was the only answer to controlling the bile, but I was reacting to the med he prescribed. He had no other options or hope. I knew what I was feeling and experiencing wasn't "normal", nor that I should have to rely and live on medication for the rest of my life, so I pursued another opinion within the Cleveland Clinic. Upon having an endoscopy with Dr. Raja, it was determined that I had a hiatal hernia and LES dysfunction. He said, "No amount of medication would fix a mechanical issue." No wonder I was in 24/7 agonizing burning and gnawing in my stomach and esophagus. 

I had a Nissen fundoplication performed on December 15, 2024 While some would go into surgery scared or worried, I felt like I skipped like a school girl on the playground into that surgery because I was feeling so lousy and miserably in pain every hour of every day that I COULDN'T WAIT to get this issue fixed. Even when my stomach was empty for the 3 days prior to surgery, I was in agonizing burning pain. In typical Daniella fashion, my bladder didn't want to work after my surgery so rather than being discharged on Saturday, I was discharged late Sunday afternoon. The first five days after surgery was a non stop "neurological storm" of symptoms because my POTS was in overdrive and the Rx pain meds were too harsh. Exactly 7 days after my surgery I woke up to an itchy, burning stomach. I lifted my shirt to see my incisions looked like bullseyes all around them. Thankfully, I had a dermatologist appointment scheduled for that very day because I was having a lipoma excised. The dermatologist was able to confirm that I was, indeed, having an allergic reaction. He said to put vaseline on it so that's what I did, but it wasn't improving. In fact, it was worsening. All of Christmas I was so uncomfortable from the itching so it definitely took my mind off of the pain of the incisions, that's for sure. When I had my follow up surgical appointment after Christmas I was prescribed prednisone. It took a second refill for the allergic reaction to fully heal. 

Looking back, the way I presented outwardly from that allergic reaction makes me wonder what happened to me internally as I haven't felt well after the surgery. Once I graduated to eating food that wasn't pureed any more, I began noticing the burning, gnawing, and wrenching pains were coming back. I could hardly believe it. In fact, it was worrisome. Why did I just go through a major surgery for this pain to be back? After multiple emails and two different visits to see the Surgeon's assistant, there hasn't been much help besides taking Reglan, anti gas pills, and them telling me to be mindful of what I eat. As if they have any clue about altering my diet. I don't eat gluten, corn, soy, yeast, or bread. I limit dairy, hardly eat eggs, and the list goes on and on. It's almost insulting for my pain to be dismissed. As if I don't know what pain is or how to handle it. My recent CT scan was inconclusive due to the fact that after a few sips of drinking the contrast, my tongue began to swell and I stopped drinking it. 

Yesterday I traveled back to Cleveland to UH Main and had an appointment to see a MALS Specialist. When Jim and I arrived to my appointment the receptionist looked at me strangely and said, "Your appointment has been canceled." I stood there in shock. I had been waiting for this appointment for almost 6 weeks and it was canceled?! After about 10 minutes a nurse came out and told the receptionist to not bill me and that Doctor Chung was going to talk to me. This Doctor kindly righted the wrong of my appointment mishap and briefly talked with me about my symptoms. She said, Everything you are  saying sounds very much in line with MALS symptoms, right down to your thin figure and the various surgeries that don't correct pain." While she apologized that she wasn't the correct Doctor for MALS, she said that she would convey to him that she spoke to me. I am still waiting to hear back from that doctor, but I am hopeful that by her talking to him that perhaps I will be moved up to being seen sooner. 

I ate two organic nut clusters yesterday and felt just awful. My stomach is sore and tender to the touch and once I eat a food that causes my stomach pain, it seems the pain only intensifies as the day goes on so it's causing me to not want to eat much. I'm also getting a significant amount of endometriosis/ovary pain almost daily. As of right now, I am having the least amount of pain with sprouted oats that are soaked all night, slow simmered for hours after that. Plain Fage full fat yogurt every few days, but I can't eat it daily or else it flares up my Mast Cell face rash and redness. It seems anything that isn't soft or smooth is difficult for me to digest and the pain intensifies. 

POST SURGERY INCISION PICTURES WARNING, BELOW:

Before surgery showing off the beautiful notes and letters that Briella & Gianna had made for me.

Those notes were next to me during my hospital stay and they brought me such comfort. 💞💝💕

Just got discharged and waiting for Jim to pull up with the car.

  

The picture on the left is what my stomach allergic reaction looked like the day I went to the dermatologist to have the lipoma, (the bruised incision on the right) performed. 

Days later the reaction worsened and I had hives all over my abdomen. I had to sleep and lay with ice packs, lest I gouge out my incisions. This is what it looked like the day I was prescribed prednisone. 

My abdomen was filled with a lot of air for my surgery and it's evident how swollen my entire torso was, even a week after surgery.

I was sent cards to cheer me up and my Mom had a blanket made for me!

Days before I would go back to work I had another endoscopy. The GI said my esophagus was red and swollen (esophagitis). A small device was implanted to check my reflux levels. Briella took this picture of me serving in the kitchen at church the Sunday I was wearing my Bravo box. 

While this pictures isn't flattering whatsoever because of my "ugly cry", it candidly captures how surprised and touched I was to walk into a room full of students presenting me with flowers and cards. I've never had such a loving, heart warming goodbye at a job. I was there for almost two school years and I loved it!

After trying to work in chronic, somedays debilitating pain, I had to follow what I felt the Holy Spirit leading me to do and, sadly, quit my job. I had every intention of "sticking it out" until the end of the school year, but my body wasn't having it. My days at work were spent feeling dizzy, foggy, exhausted, and in so much stomach pain. I was coming home flattened and worthless. The decision came after a very tough spring break vacation. I was near tears writing my resignation letter and felt such embarrassment and guilt over resigning with less than two months of school left in the year. I went to work with my head hung only to have the principal tell me that a student who needed a 1-1 Paraprofessional was withdrawing from the school the very next day and her Parapro would be taking over my position. I got chills down my arms and almost started crying. The nudging of the Holy Spirit was evidently confirmed in that very moment, but when the Parapro that would be taking over my position told me, "I don't understand why student name has to leave. There has to be a reason for this, but I'm just beside myself about it." After getting Holy Spirit goosebumps again hearing her say that, I said, "THERE IS A REASON FOR THIS! It's me. She's withdrawing and you are taking over for me." 

Talk about two people feeling two different sets of emotions and questioning the way of things only to intersect and realize it was ALL GOD'S DOING! 💝👐

I listened to a fabulous podcast this morning and she mentioned an amazing Bible verse that I am clinging to right now. 

1 Samuel 7:12 Then Samuel took a stone and set it up between Mizpah and Shen. He named it Ebenezer, saying, "Thus far the Lord has helped us."

Thus far The Lord has helped me!