Finding My Baseline

with hEDS, MCAS & POTS

My Baseline is in The Gutter…AGAIN

The last couple months have been some of the hardest of this year so far. I’ve seen several new doctors, went on my first and last long trip of the year, and I’ve been flared the entire time. I have been wanting to get back to writing and recording Finding My Baseline every week, but it has been put on the back burner because of the chaos that is my life right now.

Short Health Update

I finally got to see a real specialist. Last year I sent all of my medical information to an EDS clinic after a follower on my Instagram mentioned it to me. They weren’t even open or operating at the time. The clinic was just taking people for their wait list so I thought, why not. I believe I sent my info over to them in October of 2025 and I got a call in the beginning of April 2026. Surprisingly, the appointment was set up for late May 2026, which in my experience is extremely fast compared to other wait lists I’ve been on and are still on. If I’m honest I did not have high hopes going into this appointment. I had already been to, I thought, every specialist that should have been able to help me. Man was I wrong.

I explained to the new provider the symptoms that I have been experiencing for the last couple years. Symptoms that I have explained to MANY other providers before. Symptoms I’ve been struggling with since childhood, that never meant anything until now. It turns out the symptoms I’ve been trying to describe might be signs of a more serious issue. (Issues I have also brought up to MANY different providers.)

I’m not listing my symptoms because everything is extremely complicated and new. We do not have the full picture at this time.

The EDS specialist I saw had me preform one exercise that triggered all of the symptoms I’ve been experiencing, well, since I can remember. We stopped the appointment until I recovered enough to discuss what had happened. Then the provider explained what our next steps were going to be. We didn’t get to finish my eval because my reaction to the exercise was so severe. I have been waiting over a decade for someone to see and understand the severity of my symptoms. I am still worried that it isn’t going to be enough.

I have now been referred to get a multitude of specialty testing. I’ve been extremely overwhelmed by all of this new information. We are already having trouble with my insurance, along with other life complications. We are going to be traveling a lot for this testing, which has added an extra layer of uncertainty and stress. However, I am extremely grateful to have the ability and privilege to get this testing done. I am hopeful that this is a new beginning and the potential start to really Finding My Baseline.

What Comes Next

I will be writing more about my experiences, imaging, care and results as I receive and process everything. I understand if you have questions about locations, testing, symptoms, and results. I really want to do my best to avoid misinformation and I want to maintain my boundaries with what I am comfortable sharing. I will be sharing as much as I can, as I learn more.

Thank you all for understanding.

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My Week of Appointments

This week was what I like to call a hell week. Looking at my calendar tells me that this is going to end up being a hell month. Almost every single day for the rest of the month I have some type of appointment (not including weekends). I am trying to limit my stress, but with a schedule like this it’s really going to be hard. Here is what my first full week of July looked like.

Monday

Upright MRI with flexion & Extension

My husband took off work to drive me over 8 hours total to get this imaging done. Being in the car for long periods of time have been really hard because of pain. This scan was really hard for me because of the positioning. Any scan is hard when I can’t move, but these positions were worse than normal.

I had to stay in a flexion and extension position for 2.5 minutes each. That might not seem like a long time, but when you can’t breathe because your neck is so compressed it can become scary very quickly. If a 2.5 minute plank is hard this is 10x harder.

positioning for Upright MRI. Neutral for 15 minutes, Flexion for 2.5 minutes and Extension for 2.5 minutes.

My doctor did inform me that the imaging was clear enough to read. I am very proud of myself for being able to get this imaging done in one go.

Tuesday

lymphatic Drainage Physical Therapy

I normally have one physical therapy appointment per week. It has been a couple weeks since I've had therapy. I really needed it this week. lymphatic therapy has been one of the most helpful things for my conditions. I normally get a burst of energy for a couple days after. Sadly this week I did not get that boost. Instead it tired me out even more. Most likely because I hadn't been in a while and my body was still recovering from the drive and scan the day before.

Wednesday

LR Infusion

I normally have two infusions per week. They each last around 2 hours. Normally a little longer because of accessing and deaccessing my port. This infusion was the first one I had in over a week. I was really needing the boost.

Thursday

Canceled Appointments

Keeping up with this many appointments can be extremely stressful and exhausting. I have been coordinating for the last week with my doctor and her preferred radiologist about several different things. We almost had everything figured out until I got a call that my insurance denied two of the scans. I canceled the scans I had scheduled and my doctors resubmitted to my insurance. I believe they even did a peer to peer in order to get the scans approved. It's extremely inconvenient to change plans last minute (especially since we have to travel), but my doctors have been working together and keeping me in the loop. I honestly couldn't ask for more.

Friday

LR Infusion

I had my second infusion of the week. I was finally able to get a little sleep the night before and I finally started writing again. I normally try to use my 2 hour infusions for reading, writing or creating posts. Sometimes it's nice to literally be tied to a chair for a certain amount of time.

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Finding My Baseline

I am still on this journey to find my baseline and finally feel like a person again. I am learning so much along the way. This wouldn’t be my preferred way of learning, but at this point I'm really trying to take what I have and turn it into something meaningful. Thank you all so much for reading my work and supporting me. I will keep you as updated as I can.

Celebrate Every Win. Champion Every Battle.

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