Day: April 4, 2025

I’ve been having so much swelling lately, every day it’s worse and worse. We don’t know what to do…

My legs are ridiculous…so heavy and nothing fits.

The swelling is possibly due my lymphatic system not draining. Since even having my legs elevated the swelling doesn’t go down.

Okay seriously 😒 it’s already that I’m chronically ill, ya I get that I understand how I can still find joy in little things in life. But lately it’s been so extremely HARD to do much of anything. I’m so exhausted every day. I have burning hands and feet in the mornings sometimes.

Plus in 1 year I’ve gained 50 pounds due to this swelling. My Parin Technique doctor said “anymore swelling and it will be more and more taxing on my body.” Which is terrifying!!

Ohh also now I have Mast Cell Activation

Mast cell activation syndrome (MCAS) is a condition that causes intense episodes of swelling, shortness of breath, hives, diarrhea, vomiting and other symptoms. In severe cases, it may lead to life-threatening anaphylaxis. It’s caused by mast cells (mistakenly) alerting your immune system that there’s something harmful in your body.

Add that fun new diagnosis and we have a big bowl of not good things. anything can trigger that so add some anxiety why don’t we.

Today was a hard day I was scheduled for a Lymphoscintigraphy

Lymphoscintigraphy is a nuclear medicine imaging procedure that helps visualize and assess the lymphatic system. It uses a small amount of radioactive material (tracer) to highlight the lymph nodes and lymphatic vessels.

We went to UCSF for this test in the morning. I thought it was going to get all done today but I guess that wasn’t the plan.

First, I’m extremely happy my mom got to go in and stay with me the whole time.

Step 1: they didn’t know I needed to lay down (even though I told them) so after 40 mins all together, I started to get POTS sick…dizzy, heart palpitations, nausea.

Step 2: they found a gurney for me!!!!

Step 3: rolled me into a room, had another guy come in to hold me down while they injected me with isotopes radioactive material. It was a HUGE poke and then it BURNED soooo incredibly BAD. I swore, then sorry and cried a lot.

If you didn’t think it was that bad they injected me in between the webs of my fingers, and it burned for minutes after.

Oh also 2 in each hand separately…so I knew the pain was coming then and I still was in so much pain, it makes your body shake.

Step 4: I had to be in the hallway at least my mom was there. I dozed in and out since I was so overwhelmed with the pain before.

Step 5: FINALLY the scan. Which umm they make this huge machine come to your face almost smashing your nose so then I get claustrophobic…but couldn’t move.

20 minutes and 40 second scan

3 minutes and 30 second scan

Finally done! Oh and TMI I peed like bio hazard green after don’t worry I don’t have a pic. lol

Keep praying for good results please!!!

Ohhh that was only the upper part of the body might have to do lower part that would be something I’m not looking forward to especially since I have neuropathy in my feet.

Love, T