Join me on my healing journey.
Hills in the distance to the left with a road disappearing to the right with the words, “Join me on my healing journey… I’m tired of waiting on the doctor’s help so I’m figuring it out for myself.”
I got health insurance for the first time in my adult life at 32. In February ‘25 I walked into that poor woman’s office with 5 sticky note LISTS of symptoms organized by categories and started with, “I feel like shit, a lot of the time and I don’t know why… and I’m pretty sure I have ADHD… at least.” She is my “PCP” but is technically a Nurse Practitioner (I’ve never met my actual “Primary Care Physician” so they don’t count), and she has been my lifeline throughout this journey. She had me in front of psychologist by the end of our appointment and I had an ADHD diagnosis and medication in under a month.
That problem was easy to ‘fix”. Never mind the fact I spent the first 3 days of adjusting to that medication nauseas, with cold sweats, feeling like I was dying. I was so dizzy I could barely function and even completely lost my vision when I stood up at one point. I called to ask if I should discontinue taking it on the 2nd day and they recommended I avoid caffeine as I had been having my usual daily coffee and to see if that helped. Thankfully/unfortunately it did and by day 4 I felt almost fine. You may ask WHY DID I PUT MYSELF THROUGH THAT? Because I felt a glimmer of hope in my brain for the first time in YEARS.
I took a nap in the middle of the afternoon when I would usually have been working on stuff for my work from home job on the 5th day. When I woke up I cried. Not because I’d messed up, but because that had never been possible before. I could have worked 24 of the previous 36 hours and then gotten 4 hours of sleep the night before and I still wouldn’t have been able to take an afternoon nap on a day off before medication, let alone DURING work hours. I couldn’t turn my brain off before. It would just loop nonstop with “all the possible things that could need me, or disturb me, and why there wasn’t even a point anyway. There was so much I could be doing instead of napping and just thinking about it all instead of doing it was a waste of time and mental energy.” Anyway… thank you Strattera, you’ve changed my life. However, it does not ALONE work for me, I will have another blog linked here once it’s written going into more detail on this.
The problems that were less easy to fix are still being figured out honestly. My “PCP” ran bloodwork and did all the tests she could think of and kept coming up empty handed.
“You’re bloodwork is normal.” The most dreaded words of anyone who feels the farthest from normal.
“HOW CAN THERE BE NOTHING WRONG WITH ME WHEN I FEEL LIKE THIS?!”
After a couple months, because I didn’t want to step on her toes, I said, “Okay, I wanted to see what you could come up with first, but as you know I do a lot of research. I think I have POTS, going down the list of symptoms I can basically just check them off almost daily.”
Lightbulb
She gets the EKG machine, tests me laying down and then standing. My HR spikes over 30 BPM faster and my blood pressure drops on both sides by over 20. Got my first referral… woot!?
Not woot… that cardiologist wasted over a year and thousands of dollars so I could be asked every time, “Are you sure it’s not just anxiety?” No doctor, anxiety is not the reason I feel like I’m going to collapse if I don’t sit down EVERY TIME I go up stairs. Anxiety is not the reason my heart rate goes from 90 to 120 just because I stood up… and it probably started out at 70 if I was lying down.
Anxiety IS the reason I broke down crying the second I got to the car after my first appointment with him. Anxiety IS the reason my HR will be 150 for 30 min straight even though I’m sitting down if I’m dealing with confrontation of any kind. But why can’t I have Anxiety AND get help with regulating my heart rate so it’s not draining all my energy without my consent?
I wore a holter monitor for a week in October and he said, “You’re heart rate looks totally normal, you’re very active! This is good!”
I gapped at him for a moment before pulling myself together, “BUT I’m NOT! Most of that time was spend horizontal in my living room chair existing as best as I can or recovery from EVERY TIME I STAND UP.” I swear every time I lay down it’s a full body wave of relief that I feel.
His response ended my working with him, “Oh, well, why don’t you try working out on one of those seating row machines to increase your stamina but avoid the dizziness.” (Which is valid advice overall, BUT NOT WHAT I WAS THERE FOR. I had PT by this point for that thank you.) He asked if I had any other questions and I said, “No Thank You.” Got up and left. I still have to pay for that monitor, and have his office bills on a monthly payment plan. I wish I could just NOT PAY for his USELESS lack of assistance, but then that would effect my future so here we are.
So while wasting time with Cardiologist #1 and drinking at LEAST 3000MG of salt a DAY to keep myself functional, I carried about life trying everything I could to help myself. In November ‘25 I saw a rheumatologist who ran MORE bloodwork, I had some positive results for Sjogren’s but ultimately he discouraged me from getting a lip biopsy to confirm “because all they’ll do is prescribe you some eye drops and tell you to keep hydrated.” Wish you’d even done that much Doc…
By the end of the second appointment with him he was confident. I had Hypermobile Spectrum Disorder and Fibromyalgia. He also referred to POTS in my charts like it was a thing I had even though it was still just suspected. I left excited to learn more and ended up feeling like I hadn’t really gotten anything from him. I went in having already fully researched hEDS and suspecting that was probably it.
The fibromyalgia was a shock at first. Until I researched it thoroughly, and realized I’d been suffering from it since I was 11… I THOUGHT THAT WAS JUST WHAT LIFE FELT LIKE. I thought everyone was in pain like this all the time and just hid it better. My dramatics about mentally painful things as an undiagnosed autistic child were dismissed because I “just had to get over it” and do the thing, so why wouldn’t physical pain be treated the same? I had to give up gymnastics at 12 when I tried to go back after probably a year long break because my mother had a (traumatizing) accident. It hurt to much… I went to one practice and my whole body was SCREAMING for days. I couldn’t do it… how could I go back if it felt like that to get back into shape? I switched to playing basketball, then added soccer, and eventually running track… so I was definitely still very much in shape. My parents discouraged the doctor whenever possible as my mother is great with herbal remedies, and once I turned 18 I moved across the country and was no longer covered by their insurance even though I was of age to be.
So I just spent my whole life being dismissed or minimized when I complained about anything and then telling myself I was over reacting or being dramatic. So the mask the grew stronger. In the background of all of this I am meeting with the therapist about my ADHD, on the second appointment I tell him, “I think I have Autism too, I don’t think it’s just ADHD.” He says….
“We don’t diagnose adults with Autism so let’s try and find you a more adult diagnosis.”
I should have left him right then. Instead I continued to see him until he disappeared on me… for months I was just left waiting for his call, or being told I’d hear from him soon if I inquired. Finally by May ‘25 I requested a new therapist. She was fantastic! Took my mention of autism and went straight to doing preliminary diagnostic tests with me, which came back very likely so I got the referral for diagnosis after the FIRST appointment with her. This was my confirmation to never let my health suffer at the “benefit of the doubt” again.
Of course insurance wouldn’t let me get 2 different mental health diagnosis’s in a 12 month period so I had to wait till March’26 for that but guess what… I’m Autistic AF. My ADHD is also in the 99th percentile of inattentive. I got EVERY SINGLE QUESTION. lol I had successfully left my body and lived solely in my head now is how I interpreted that.
They also threw in an official anxiety and depression diagnosis so that’s cool. I’m sure that’ll be helpful in the future…
In February ‘26 I had completed my own Sjogren’s research and gotten a referral to an ENT right before my PCP went away on maternity leave until May. The lip biopsy was very definitive… I had Sjogren’s Disease as well. The ENT called me with the news… a few weeks later I received a letter in the mail with a copy of the biopsy result letting me know the news about my Sjogren’s from my rheumatologist. It came right after the bill for all the bloodwork and testing that apparently wasn’t covered by my copay and insurance. They never even called to discuss my options, but you better believe they called when I didn’t make a payment toward that bill for a month…
Can someone explain insurance to me because it doesn’t make sense. Last year I paid $100/month for insurance and got $500+ a month in extra bills it felt like… but if I pay $500/ month for my insurance because I think that will help make it REASONABLE…. I still get hundreds a month in extra bills… WHAT IS EVEN THE POINT? I feel like breaking my ankle and getting surgery without insurance in ‘23 cost me less…financially in the moment anyway, pretty sure that triggered the POTS though...
I meet my new cardiologist NEXT WEEK! Wish me luck <3
On that note… I’ll leave ya for this week! Stay tuned for more blogs to come about my healing journey, what has/hasn’t worked for me so far, as well as more informative ones on different diagnoses - for those of you who aren’t a fan of doing you’re own research!
I’m just here to make things a little easier however I can.
Love you all <3