Life & Health Update

Ahh, it’s been a while since I’ve posted. I’ve been so overwhelmed with all the crazy shit happening that I tend to shut down. This is a long one, covering a lot of health stuff.

I also redesigned OSN a little bit; it’s different but the same… but different. You get it.

Life Update

Misc

What would have been my mother’s 71st birthday was on August 12th. I have not begun to feel the grief of having both of my parents suddenly die within four months and two weeks of each other. I’m told it will happen when it happens, but I worry that it will never happen to me. It’s just too much for me to process emotionally.

I love playing World of Warcraft and Hearthstone.

You can friend me if you want!

My BattleTag for Hearthstone is starrymom#1153. For WoW, I’m OctoberSkye on Norgannon, and I play Horde.

The other night, I got a kick out of turning it around in Hearthstone against a player who had amassed a ton of armor. For those who play, you know how Druids can be!

I kept doubling what he did, and well… you can see. I’m the player at the bottom of the image.

I finally updated all of my Apple devices to iOS 18. It’s so overwhelming! There is so much newness! I am firmly in the Apple ecosystem, so it took me hours to update all my devices.

One of my favorite Apple Music playlists got jacked up, and I damn near lost it trying to fix it. Thankfully, my trick of switching to my Macbook Pro laptop, turning off WiFi, opening Apple Music, and seeing the playlist correctly intact, which let me duplicate it, make a video of it, and then was able to make things better again as the original playlist didn’t recover, but still. Music speaks to my very soul. I then returned to my Windows computer and exported all my playlists, just in case.

My twin sister got her RN license. As a gift, I got her all the Sarah J. Maas books (my favorites!).

Friendship Breakup

I had an almost 25-year friendship end via a mailed note-card accusing me of “going no contact” with them because I didn’t respond to a text while struggling with the debilitating migraine attacks, which I had made clear repeatedly for months, was an issue I was having, the first death anniversaries of my parents, and dealing with the death of Shadow. They alluded to knowing “why you went no contact,” it stupidly took me over a month to figure out what it was. It was all because I wrote one sentence in my previous post about the shitty text they had sent me right after my dad died. So they made a huge assumption, ended our friendship, and made up an excuse, blaming me.

I contacted them via a massive text on August 10th with no response, then copied and pasted the text into Facebook Messenger on the 13th because it showed them online. On the 17th, I messaged again, saying the silent treatment is cruel, especially when they know how it’s used against me by my spouse, and to remove me from managing their work VPS, which I did in return for free hosting space, I’ve since moved to BigScoots.

That got them to respond but to tell me, “There’s no need to take it personally” and that they would “get to it when they get to it.” That stressed me out, so I contacted the VPS company, which, FYI, I would never recommend. However, instead of removing me as a manager from the account, the VPS company deleted my account. Thankfully, I don’t have any other clients over there, but geez.

It’s been a full month since that last contact. My ex-friend still follows me and has me friended on social media but hasn’t said anything to me. I feel nuts because did I even know this person the way I thought I did for all of these years?

It’s impossible not to feel like there’s something wrong with me that this has happened twice. Last time, it was a friendship of ten years, and it’s because I didn’t respond to a text when one of my cats was actively dying from FIP, so I didn’t have the energy beyond that situation to respond to their text. They ended the friendship instead of calling, visiting, or sending a text letting me know they would be there when I was ready. Naturally, it was after I supported them through a stressful time in their lives.

Maybe I expect too much? Perhaps I’m too much. I don’t know, but it’s fucking with me.

Health Update

New Hormone Doctor

I decided to find a new hormone doctor after the one I saw for the last four years told me repeatedly that they weren’t willing to work with me to figure out why I am still so sick, rescheduling me repeatedly, ignoring massive health red flags, refusing to increase my meds, and not doing the appropriate diagnostic tests.

I will appreciate everything my previous one did because she was the first person to at least try, but I’ve just gotten sicker and sicker.

As to the new one, OMG, impressive! Not only do we have the same first name, but she’s also a Libra and ordered all the labs and tests I should have done years ago. We were on the same page about so much!

Labs

I am extremely deficient in Vitamin A—I’m not even in the range. Considering that Vitamin A directly affects your vision, this is probably why I’ve been struggling the last two years, and it’s probably not cataracts.

My adrenals are low (not surprised). My anemia is worse than I thought, as my total iron and iron saturation are so low they aren’t even in the range. My inflammation is still crazy high.

I suspected I had a 4th reoccurrence of mono after I had pneumonia, and I was right. It explains my crushing fatigue this year. I’m frustrated because I told my previous hormone doctor and primary doctor. Instead of testing for it, they keep testing my Vitamin D and Vitamin B12 even though I take a high dosage of Vitamin D and have no issues with my B12, which the lab tests confirmed.

My thyroid numbers are still bad. I’m not even in functional territory, much less optimal.

My thyroid ultrasound and more labs are scheduled for next week.

Surgical Consult

I had a surgical consult for my severe diastasis recti and very large umbilical hernia on the advice of my primary, who told me that the surgeon “absolutely” would repair it for me.

Once I got there, I had to repeat numerous times to the tech that we could not do vitals immediately for various reasons, one being that they would be hugely inaccurate due to the temperature being 108 degrees and that I had been walking, which would give incorrect blood pressure and pulse. When he dismissed that, I explained I also have CPTSD due in part to medical trauma and that we needed to wait until the end of my appointment to do my vitals. He kept pressing the issue until I said, “Look, I know you’re not trying to kill me, but a previous doctor almost killed me and did some fucked up things, and I need my brain and body to reconnect.”

He dropped it after making more comments, and then when the doctor came in, the doctor asked me, “Why are you declining vitals?”

Sigh. I explain again. “So you’re declining vitals?” I explain again in specific detail the trauma I experienced. He kept pressuring me until I said, “I saw my primary exactly one month ago; she is happy with my vitals.”

Then the visit spiraled into there’s nothing he can do for me; he does not deal with diastasis recti, only hernias, how he does not do mesh for hernias because it’s terrible and fails (this is an important detail!), and how it doesn’t matter anyway because I’m fat. There’s no point in fixing hernias for fat people unless it’s an emergency, and this was not an emergency.

The entire time, I am feeling sick as I have pretty bad heat sensitivity due to my hot mess of issues, and it’s a side effect of one of my medications; I am getting the strangest sense of deja vu, too. Finally, after all sorts of other stuff, it hits me when I get back into my car. This was the surgeon who performed my father’s emergency hernia and small bowel obstruction surgery in October of 2021.

I don’t believe I wrote about it; I thought I did, but nope. Surprising. Anyway, it was an extremely traumatic situation. My brother then had the Power of Attorney but refused to go to the hospital. My sister also did not go to the hospital; it was just me. Remember, my father was completely and utterly deaf. He had a non-functioning cochlear implant. He did not know sign language. His means of communication were lip reading and having people write stuff down.

When I got there, the notes written down for my father were, “Do the surgery or go to hospice and wait to die.” The doctor did not explain the issue, why he needed surgery, or anything helpful. When I got there, I had to advocate for my father and assist in communication, as I’ve done so many times in my life.

I remember meeting the doctor (as awful as I am with names, I retain faces surprisingly well), my father had surgery, and during that, I developed an intense and scary migraine due to the stress where I went blind in one eye. My husband, who had come with me, told a nurse who gave me some of her personal Excedrin Migraine, but that was it. Not even a recommendation to go to their ER.

After the surgery, when the doctor came to update me, he made a lot of comments about my father’s weight and size and kept expressing how shocked he was that my father survived the surgery and how he probably would take longer than average to heal.

So, when it hit me that this was the SAME SURGEON from October 2021 for my father, I couldn’t let it go. When I got home, I pulled up my father’s records from that time and SURE FUCKING ENOUGH SAME PERSON. And this was the first time I was reading the notes and reports, where the doctor kept saying my father was “extremely hard of hearing” and “difficult to communicate with, he needs me to write everything down“. How the surgery was a hernia repair WITH MESH, that mesh he told me was terrible and failed. On another note, three days after the surgery, how shocked he was at how well and fast my father was recovering.

Then I looked up my visit notes, and besides it being fatphobic, there’s a line on how “she refused to do vitals, saying she has PTSD from people doing vitals.” WHAT THE LITERAL FUCK?!

I’m not going back. The only reason I even went is because my primary told me that, of course, he would do the surgery to fix my hernia and diastasis recti and that he would have no issue with my weight. The sheer odds that a person in a hospital who did an emergency surgery on my father would be in a completely different town and office, the person I had a referral to see, is so beyond crazy.

They called me the next day to tell me that my insurance approved a CT Scan. I asked them why they did that. I was not given an order for one, only a recommendation to have one before 2026, and how the doctor said he would not do any surgery and that no doctor would because I’m fat and that the doctor told me I was so large it would be impossible for me to fit in a CT Scan, so please help me understand. The receptionist went silent and said, “umm I will make a note of this I guess.”

Again…. what the fuck. This isn’t to say he’s not a solid surgeon who does good work, as I can’t comment on that side of things. It’s frustrating because I was told how “chill” and great he is, but I suppose that’s only true if you have an ideal body. I didn’t choose to have these health problems that caused all of this weight gain while struggling to eat… ever.

It just left me feeling overwhelmed, unheard and traumatized remembering everything from 2021, and like I’m 950lbs and a burden on society.

Nourish (Nutritionist)

I kept seeing people post about Nourish on social media, and since my insurance covered 100% of the visits, I figured I could try it. Now my eating is jacked up. I barely eat because I don’t have an appetite, I see foods in “good” or “bad” categories for the most part, and when I do eat it’s 85% vegetables, fruit, and lean protein like boneless skinless chicken breast. I also track everything I eat and do WW (WeightWatchers). I don’t want my diet to be a variable regarding all of my health issues, so I am pretty strict.

What I had hoped to gain from this service, which I talked about in the first appointment, was WHAT TO EAT! Meal planning! Over the years, I’ve tried to do it on my own, but I get overwhelmed easily trying to do it. I also wanted validation that my diet wasn’t an issue.

I did like the app. You send photos of your meals and can describe them in further detail. You have sliders to indicate how hungry/satisfied you were before and after the meal. You also have an area to message your nutritionist. I liked that the appointments were virtual video and an hour long.

The issue came down to my nutritionist. She never helped me figure out what to eat or plan the menu. Her advice didn’t seem personalized; for example, I was much more nocturnal then, which should shock no one. So, my meals were much later in the day/night. She recommended eating in the morning when I should wake up. Even though I explained no matter what time I wake up, I can’t ingest anything but water due to my thyroid meds, which require an hour after taking before I can eat or drink anything of substance. I try only to eat when I feel hungry (which is rare that I feel hungry, but still) and stop when I’m full. I am rarely a daywalker, so trying to get me to shift my sleep and be “more normal” was difficult.

Meal planning, calories, macros, and diets were never discussed, not even regarding my thyroid and GERD issues. She never followed up with me when I didn’t schedule a third appointment, even though, to this day, she’s still set as my nutritionist in the app.

I can change to a different nutritionist, but what’s the point? I saw a nutritionist in person in 2015 who told me, “I don’t know what to tell you. Maybe eat another piece of fruit a day? I just don’t know.”

ADHD Assessment

First Appointment

When I saw my primary at the end of July, she sent a referral to a neurologist/psychologist center to get me tested for ADHD. I only had the inkling I might have it at the end of March 2024, and by June, I suspected that I strongly had it. So, after playing phone tag for two weeks to set up this appointment, I finally connected with them on August 8th for an appointment date of August 27th. The phone call to make the appointment lasted 18 minutes, and the receptionist thought I was hilarious and commented on how it was obvious I had it, how I sounded like her before she was medicated, etc. She was very nice because I couldn’t stop talking.

On August 26th, barely 24 hours before my appointment, I saw that I had a voicemail from them at 10:37 am telling me it needed to be rescheduled but that they had an opening that afternoon at 1 pm. I thought this was perfect! I could tackle that, then do my surgical consult and knock it all out in one day, so I called back at 10:59 am. I had not listened to the voicemail, only read the transcript, so when they answered, I said, “Hi! I’m returning a voicemail you left just a bit ago about rescheduling my appointment to 1 pm today. That will work for me!” She asked for my name and birthdate, said 1 pm would still work, and then I asked the question to turn this 1-minute call into a 25-minute one.

“Hey, real quick, how long will my ADHD assessment take?”

Shit hits the fan. I’m told that they don’t do it that way, that you would come in for a consult, then it’s decided if you need an assessment, and it didn’t matter anyway because the appointment is scheduled for migraines, not an ADHD assessment. We went back and forth for 10 minutes to figure out how this had happened. After all, this appointment was scheduled based on the referral from my primary, which clearly stated the purpose. The only reason anyone knew I suffer from migraines is that I had made a joke about it to the receptionist during our 18-minute call. Eventually, she gave up and said she would transfer me to the person who had left the voicemail.

After another 15 minutes of rehashing it with this second person, I was told she had made a mistake. It would be for 1:30 pm, but it wouldn’t matter since it wasn’t the appointment I needed. She told me she could keep my original appointment time, make it virtual, and that I would do an ADHD assessment and it would be with the head of the practice; she couldn’t do it in person because she wasn’t in the state, so that’s why it would be virtual. Ok, great, no problem. I can work with this. I confirmed multiple times that I would have a diagnosis of whatever my issue was. She confirmed that I would.

On August 27th, they called me to check me in; I asked them to please set me up with the portal before we started the appointment. I do not get the email. Finally, I used my basic GMail, and it worked. I thought it was a character limit issue, but it was strange because I have two other doctors with the same portal and my super long email address. I repeatedly ask if I have a co-pay and am told no. After the third time, I told them that if there was, they should bill me. Before we get off the phone, she tells me to prepare a text with a link to connect to the video call. She says to have a great time with *a different doctor’s name*. I said wait, what???

Yeah, so I was never scheduled with the practice head in the first place. They had no idea why I was told that.

At 1:02 p.m., I finally got the text after telling myself I would call them back at 1:05 if nothing came through.

The person was okay. We started right away, and it was questions like, “If you were in a work meeting, do you feel the urge to walk around?” All of my answers had some combination of “that’s not specific enough” and “I don’t work outside the home, so I don’t understand all the work questions,” I was just rambling. And the jokes I was making were taken as serious statements.

After 30 minutes, she abruptly told me that we were out of time and needed to schedule a second appointment for the end of September to finish it.

I’m beyond upset and frustrated at this point. I explained the hassle of even getting the appointment and how it’s been one issue after another. She said there wasn’t much she could do, and she gave me the earliest appointment date and time. I told her how I was told that I would have a diagnosis by the end of this specific appointment, and she said, “Oh, you will be diagnosed with ADHD. Most of the second appointment will be going over your treatment options.” I explained I wasn’t looking for treatment, just a diagnosis and validation that I’m not a fuck up, as I’ve been told my entire life.

I then went into the portal and realized that my medications were all incorrect and, even more frustrating, my last name was entirely wrong. The email I initially tried to set up had my name, so it’s no wonder I wasn’t getting it! I messaged them, and the office fixed the medication list and name issue. I never had a care summary.

Second Appointment

This time, it started five minutes late, which was frustrating. She also didn’t add on the extra time at the end.

She asked a few more questions and again brought up medication, of which I had to remind her that I told her in our first appointment that I didn’t see the point in medication. With all my other health issues, I don’t need to introduce another medication and its potential side effects.

She informs me that she is diagnosing me with ADHD. I asked her how bad it was on a scale from one to ten, and after she asked me who I was talking to, I said, “Uhh, I’m talking to you still…” She said, “Ahh, you’re struggling, really struggling.” I mean, am I? I don’t know any different. What am I struggling with exactly? I’ve been this way for almost 43 years. I don’t see where the struggle is beyond my inability to stop talking to some people.

I asked her when the diagnosis would be in the portal, and she said it should have been there the last time. I sent a message to the office in the portal asking for the care summaries and something I can show my other doctors if needed, such as this new diagnosis. I was told they don’t put much in the portal because they are a neurologist/psychologist center. What’s the point of the portal then? Many weird things were in the file when I got my full record.

For example, she wrote that I was “high energy.” What? Both appointments were virtual. My camera showed me from the neck up. I stayed in my chair and didn’t show much motion. Hell, I’m lucky if I can go from my bed to my desk most days. My health problems cause all sorts of issues for me: fatigue, weakness, agonizing non-stop pain, etc. What I did was talk a lot and talk fast, which is normal for me. My teenage son said, “Remember, Mom, how has this always been a problem for you? It’s your voice.” And he’s correct. My whole life, I’ve been told I’m not sick, stressed, sad, upset, angry, etc., because my voice is so perky and chipper. My sons say constantly that I sound like a My Little Pony.

There was a question about my ability to wait and stand in line, and I made a joke that it wasn’t like I was standing in line at the DMV and chasing after a butterfly. The note? “She said she stood in line at the DMV and was distracted by a bug.” Uhhhh ok?

Or in bold type, that I’m loud. Like… I grew up with a deaf father who didn’t know sign language. Yes, my siblings and I are loud. We grew up that way. Plus, I had three fans in my bedroom going simultaneously.

She wanted to have a follow-up in two months to see if I wanted medication at that time. I ended up canceling it because this was not the vibe. I don’t think stimulants should be pushed so heavily, especially on an individual like myself who is taking so many medications and supplements and has a ton of not common health issues.

So, sure, the result is what everyone (myself, family, doctors, random strangers) strongly suspected. Still, the two experiences with this place have me wanting to see someone else in the future if I ever want to do anything about having ADHD.

It’s one thing to think you have something wrong with you and another to have it confirmed. It’s making me re-evaluate my entire existence. My whole life, I’ve been told how lazy I am, how crazy I am, how I must have anxiety because I talk so fast, etc.

I understand a lot of people will self-diagnose themselves with ADHD, and I couldn’t do that. I needed an assessment from a professional. So many ADHD symptoms can be due to something else entirely. I also am baffled at people who self-diagnose themselves with ADHD while being easily functional and form habits, and their brains turn off. It’s sort of… the opposite of ADHD.

gastroenterologist

I saw a gastroenterologist due to my ulcers/GERD causing intense pain more frequently. I have been on PPI medication since August 1st, which has helped, but you can’t take them long-term, and I wonder if I have other issues in my stomach that cause me not to absorb vitamins and minerals.

Overall, the visit was fine. This was a doctor my sister had recommended. I was on day two of another severe migraine, and it ended up lasting three days ugh. So it was a struggle, but you can’t cancel doctor appointments without being penalized with a huge fee, so I had to suck it up.

I had to go back and forth with the tech about taking my vitals at the end of the visit, but she did come back and take my blood pressure, which was perfect. No one believes my blood pressure is good because they never return to take it!

I have an endoscopy scheduled for a couple of days before my birthday in mid-October. I’m nervous because I do not like being knocked out and because I’ve never had one before. It won’t explain my malabsorption issue, but it should hopefully answer why my stomach hurts so bad, beyond the ulcers and GERD.

Final Thoughts

Well, if you’ve made it this far, thank you! I know this was a crazy long update post that wasn’t super perky and positive. But it’s my current reality. Sometimes, I wish I had had health problems that were more “normal” and easy to fix. I’m tired of having these weird, uncommon issues!

Here are a couple of cat photos as a reward, LOL!