Every year, I get new symptoms that add on to my chronic illness. This is usually pretty typical of most who have a chronic illness and as time goes on, you’ll likely get new issues added into the mix.

It took me a while to realize the connections between everything, but it’ll be explained out here.

Since my previous flare, I began eating again on July 30th. I had some Smarties and had my usual issues but not to flare degrees, so I knew it was “safe” (within my definition of safe) to continue eating them.

August 1st, I spoke to my nurse about my continual breathing issues, and we discussed that it was likely they were inflammation related but we just didn’t know how or what was causing it.

August 2nd, I had taken some photos for the blog and was wearing a pair of my heels. When I had taken them off after the photo, my right foot was hurting under my sesamoids. Oh great, don’t tell me I injured the other foot too…

I thought it was odd but didn’t think about it and just tried my best to limp off both feet now because I had a more pressing pain issue elsewhere which was drawing my attention further than the foot pain.

My hands.

My left hand was as I used to say, “cramping closed” and my knuckles and thumb were extremely hard to move. I tried to just not use my hand and went about my day as best I could.

Then, my breathing pains and chest pain had crept into the party, and I was still mostly focused on my hands because they were hurting the most and it was difficult to even hold my phone to text my dad.

By the evening, my left hand was very swollen and red so I took lots of photos and sent it off to my medical team.

I got a hot pack and some Tylenol to try and help with the pain and got ready for bed.

I couldn’t even put in my retainer that night because my gums were swollen so I couldn’t fit my retainer in.

All of these things happened on the same day, but I made no connection to them until many days later.

On August 3rd I still had my foot pain, and my gums were still swollen. I didn’t have any chest pain or hand issues though.

August 4th, I had an appointment with the nurse practitioner at my primary care office who I totally freaked out with how complicated my case was.

They had also asked if anyone had responded to any of the medical messages I had sent out about my recent flares and hand issues and I had said “nope-but that’s pretty normal, I just send them out in case they want to read it,” which they were so shocked about.

It’s still true today- I never send out the messages expecting a response or help, it’s more of “I’m just letting you know this happened-do with that as you will”.

August 5th, the heatwave warning had been extended so it was really hot outside, and it was thunder storming. A perfect “storm” for rheumatological issues such as inflammation…

And wouldn’t you know, my hands, feet, abdomen, and lung area were all inflamed. I had taken photos of my back because I was having difficulty and pain breathing again for about an hour and had felt inflammation on the right side of my back close to my spinal cord that spread out across my rib cage.

My hands had some knuckle inflammation, and my feet were swollen as well.

Plus, I still couldn’t get my retainer in from the inflammation. All issues that were fine a couple weeks ago.

More signs to some sort of issue (whether I had it before or if it’s developing now) pointing to an inflammation issue.

August 7th I had decided to retry eating the cream of rice since I had taken a 2 week break from eating it and felt it was long enough to retry. I had less of the rice than usual (because it exploded in my microwave because I accidentally added too much water) so it was about an ounce of rice that I ended up eating.

I had eaten the rice at 4:30pm and at about 6:20pm that evening I began having severe pain that was enough to have me race to the bathroom. I once again had a vasovagal syncope attack (I never faint from my attacks but get the other symptoms from it).

It’s a shame- I thought the cream of rice and I were going places. :-/

August 8th, I had a virtual appointment with my autonomic neurologist, and I got the results from my autonomic testing! For my autonomic issues I have been diagnosed with dysautonomia of my parasympathetic and sympathetic nervous systems with chronic tachycardia.

This means my “fight or flight” system is dysfunctional along with my “rest and digest” system. They told me that whenever I stand up, I have a 12% drop in blood flow to my brain which is why I always feel so lightheaded all the time and usually have brain fog when standing up. My heart rate is still tachycardic so they wanted to trial me on Mestinon to see if that would help and wanted to up my dosage on the fludrocortisone since that helps with my blood pressure.

I mentioned to them the inflammation issues and they wanted me to come in the following day to get a Cytokine 13 panel done which is a blood test for inflammation markers.

August 9th was a wild day. I woke up having trouble breathing and my back inflammation was very puffy. It was super humid out and the temperature said it felt like 99 degrees and it also rained for some of the day.

I had gone to physical therapy and had the most trouble breathing than I have had in almost a year. I went home later than usual because I took so many breaks between exercises to try and breathe alongside chest pain.

I got home and told my nurse what was going on and they examined me and called my *nonexistent primary care team* and recommended for them to order a chest x-ray to make sure my Hickman didn’t accidentally puncture a lung or displace.

After my dressing change, I hopped in a car and headed to do my blood test at the hospital. They only had 1 nurse working so I spent 30 minutes in the waiting room. As I was taking the car back home, I got a phone call for an urgent appointment at my main hospital to see the on-call primary care doctor for my breathing issues.

I arrived home, changed my TPN, and headed back out the door to go to the hospital to see this doctor. It took a bit to actually get signed in since people kept sending me and another patient up and down between different floors, but I eventually got checked in.

The doctor was very pleasant and seemed extremely perplexed but fascinated with my case. They examined me and said it was a great idea to do a chest x-ray and ordered one immediately.

I was told to head over to the main hospital to get the x-ray done. I walked all the way over and the radiologist told me to go ahead and change out of my clothes and to meet them in the x-ray room.

I changed out and they said they couldn’t see the order from my doctor and that I needed to call them. -The doctor I just met minutes ago….sure, like I have their phone number…

So, I called the main primary care line, and it didn’t ring because the office was closed. I called a few more times and hit their “emergency nurse line” but every time it switched over the call disconnected.

I walked into the radiologist’s room and said, “do you have the pager number for primary care?” and they said no but that I could come back tomorrow to get the x-ray done.

Determined to get this over with I said, “No, do you really need me to go all the way back upstairs to get that order for you?” and they said they “felt bad” but I just marched off to change again.

I made it back to primary care and spoke with the receptionists to figure out the issue. The order was through, and I gave them the radiologist’s pager number to call them. They said the radiologist just didn’t look for my medical record number.

I then went all the way back to the main building and changed into the dressing gown again with the irony of me running around the hospital trying to get a chest x-ray for shortness of breath.

After the x-ray, I made it home at 9p.m. and headed off to sleep.

The following day the chest x-ray came back clear, and I was still waiting for the blood test results.

I had opened my email and been offered a stage management job to work an event at my school which I accepted!!

8/15/22 Update: The Cytokine panel came back showing almost every result abnormally elevated!! FINALLY, a test SHOWING SOMETHING!!!! Stay tuned!!