#I got lucky that my PCP even asked about my sleep and that I had a renowned neurologist near me

[nothorses]

Top Surgery Journal

I figured it was time to share my top surgery experiences, so folks can potentially learn from them! I'll be updating this as I have more to add.

For context, I am in the U.S. (specifically Washington state), and a legal adult. A lot of my process may not apply to everyone.

Getting Coverage

The first step to scheduling top surgery is getting insurance coverage for it. Talk to your insurance first to figure out if they do cover top surgery, and what you need to do in order to obtain coverage. Oftentimes it won't be listed officially on your plan, but you can get coverage as long as you can prove you need it.

I was lucky enough to have good insurance with trans healthcare included, so all I needed was a letter from my PCP, and a letter from a behavioral health counselor specializing in gender dysphoria. I didn't need any diagnoses, any specific length of time on HRT, any particular presentation, etc.

(If you live in Washington, state law requires that top surgery be fully covered under Medicare. It might be worth it to check your state's laws as well!)

Referrals

I tried to schedule with a surgeon myself, thinking it was my responsibility to get the documents sent over and everything, but my PCP actually referred me when I first told her I had gotten coverage from my insurance.

I ended up going with that referral because the other surgeon was so hard to get ahold of, but my PCP did also send a referral to the surgeon I'd chosen before. I recommend going through your PCP for referrals first, as it takes a lot of the workload off of you- and they'll likely write a referral anyway when sending the documents needed for coverage over.

You may also find that the surgeon you talk to has different requirements than your insurance before performing top surgery. A referral from your PCP might bypass these requirements, but be sure to call them yourself and double-check. Your surgeon's office is supposed to call you to schedule a consultation, and they may not call you at all if you don't have all of those documents in- which means you can be left in limbo indefinitely, not knowing you need to send them more than you already did.

The Consultation

I was able to get a consultation about 5 weeks after calling, which was great! The consultation is your opportunity to ask the surgeon any questions you have, for them to evaluate your chest and what methods might work for you, and for you to see their results (most surgeons do not post result photos online for privacy reasons).

Come into the consultation with all the questions you have written down somewhere, so you don't forget. I asked:

If I could see photographs of his top surgery results

Which incisions he thought would work for me, stressing the things that were important to me: minimal recovery time, no free nipple grafts (I wanted to keep mine, but without risking a failed graft), and minimal chance of needing revisions

What my recovery would look like for the recommended incisions

Whether I will be getting drains (ideally, yes: drains reduce recovery time and the risk of needing revisions)

If he's had patients who have had complications (failed grafts, infections, need for revisions, etc.) and what he's done to reduce the chances of that happening again

My surgeon's results looked good (scars were even and symmetrical, healed nicely, etc.) and he answered my questions really well, so I was happy to go with him!

He recommended the fishmouth method for me, because recovery time would be minimal, there would be no need for nipple grafts, and my chest was small enough for it to work really well.

Scheduling the Surgery

My surgeon didn't have a very long waitlist, but it still took about 3 weeks for the clinic to process my request with my insurance (yes, even though I already had coverage). Once they'd processed that, they called me with a window of time I could schedule within; after a few months, insurance would no longer cover the surgery.

I got an extension, as I was working an intense summer job that I couldn't really take a few weeks off of to recover, then scheduled my surgery over the phone. They asked if I wanted a pre-op appointment, and I declined, as it'd mostly be information covered in the consultation or that could be given to me over the phone.

Preparing for Surgery

I wasn't given a check-in time for the hospital until about 2pm the day before, but they finally did call me and give me some instructions, including:

My check-in time and place

The hospital's phone number, to give to my ride/caretaker in case they had questions

That I was not to bring visitors (cause covid)

To bring my ID, insurance card, and credit card

That I was not to eat or drink anything after 12am that night (I did drink a bit of water with my meds, which they seemed fine with)

To shower with antibacterial soap the night before, and the morning of the surgery

Not to wear hair or skin products like deoderant or gel

Not to wear any jewelry, or anything else removable that wasn't just a clothing item.

When I checked into the hospital, they had my fill out some paperwork including the name and number of my ride and caretaker (which could be the same or separate people; they called the ride number when it was time to pick me up, and the caretaker number with detailed updates on my progress). Then they had me change into the hospital gown and answer some medical history questions, prepped me with an IV, and had a nurse, both anesthesiologists involved in my surgery, and my surgeon check in with me for more information and to answer any last questions I had.

I was told to use the bathroom about 20 minutes before I would be going under for my surgery (to avoid needing a catheter), and once I did, they injected some anesthetic into my IV and I passed the fuck out.

After Surgery

I showed up to the hospital at about 9am, and the prepping ended around 11am. The surgery was scheduled to end at 2pm; I wasn't conscious until about 3pm.

They had me use the restroom again (I passed out on the floor of the bathroom because it was way too soon, lmao), and I was in and out of sleep until I finally used the bathroom on my own at about 5pm. At that point I was a lot more lucid; I had some toast and pudding, and the nurse called my caretaker to go over post-op instructions with us both.

After that I dressed myself, was wheeled out to pick up my pain meds at the in-hospital pharmacy, then hopped in the car with my ride (the wonderful @lillia-pad) at about 5:30pm.

Recovery

I have a pretty high tolerance for anesthetic, so I was mostly just tired during the 36-ish hours the anesthetic continued to wear off. I didn't experience any nausea or lightheadedness either, but I was given an anti-nausea patch behind my left ear, plus some anti-nausea meds, just in case.

My post-op regimen sort of looks like this:

Take 1-2 tablets of oxycodone every 4 hours (for pain)

Take 2 tablets of laxative meds twice a day (cause pain meds cause constipation)

Empty drains twice per day, and record how much was in them

Get up and walk around every couple of hours to reduce the risk of blood clots

Ease into eating again: start with clear fluids, and work up to crackers/bread/etc., to avoid nausea and vomiting.

Lay down propped up on plenty of pillows, and only on your back (no side-sleeping!)

Keep the compression binder/gauze on for the first 48 hours, then remove them to shower as needed (but put them back on after!)

I was pretty lucid by the third day post-surgery, and was able to scale my pain meds down pretty quickly from 2 tabs on the first day, to 1 tab for the next two days, to 1/2 tab. Meds are much more important at night, when there's nothing to distract you from the pain- don't be afraid to ration them for nighttime.

Oxycodone also definitely causes drowsiness, so I took a lot of "oxy naps" about 45-60 minutes after I took my meds, which last between 20 minutes and 2 hours depending on how tired I am.

I have my post-op this week, so I will update this post with more details on my scars and healing then!

[vtforpedro]

health update - long, long post

two out of three appointments done!! good news all around. first, with my hematologist... so apparently I've been in remission since december and didn't know it because the literature talks about milestones you have to reach for the type of leukemia I have but lmao ???? hey I've been in remission for almost eight months, cool ;P if I go two years with no signs of leukemia, we can extend my appts out! but for now we will still check labs every three months my endocrinologist sent me to an Expert Thyroid Radiologist and she said my ultrasound on the goiter/nodules looked good enough to not even need another ultrasound again (barring any major changes in numbers, I imagine) and my tsh levels are excellent so 👌 don't have to do labs again for a year!! I see my rheum on the 3rd and I imagine it will go much the same way as I've already seen my labs and they look ok to my layman's eyes lol and thank god she let me switch to a telehealth appt so I don't have to go in for this one because I had to go in yesterday to my hematologist's office hnnnn this is all really good news and feels great but GOD! it's extremely hard to tell what's been giving me symptoms since CML, hypothyroidism, and of course rheumatic diseases all cause intense fatigue, appetite weirdness, skin problems and more. but depression/anxiety/ptsd also cause all of these things and so do both of my neurological conditions. my rheum thinks the basic symptoms my PCP was concerned about for lupus or scleroderma is the whole shebang combined and I'm sure she's right it's always been the neuro shit that's given me the worst symptoms and agony and extreme discomfort I've ever felt in my life lol and that has an uncertain and at this moment frightening future so... yeah, we'll see where I'm at in a few months I guess and if there's been any improvement. but fighting what happens in my brain every day is the most exhausting thing I've ever done and the damage it does to my mental health cannot be understated, which my neurologist loves to do! so as soon as I do a couple tests he ordered I'm finding a new one. not for new answers, but only for someone not a complete mess of a person who contradicts themselves constantly within the same breath y'all my last appointment with him was absolutely BANANAS. he spent more time complaining about the company he worked for and defending himself and justifying himself to himself??? than like. treating me lol he makes so so so many mistakes, he lies, and I'm still boiling over the question he asked on the phone on july 1st 'so did anyone go over your MRI results with you?' (from mid-APRIL) like do you mean YOU, SIR???? god. he reviewed them with me on my appt on july 14th and got all huffy about them doing 'the wrong MRI' cause I was supposed to have an MRV, not an MRA, and yet he has put in like 6 or 7 orders (four in the same day) for an MRA, including on the 14th, just in case you need a picture of what this man is like. I could make three whole posts about him, he's chaotic and not in a good way him: 'well you've lost 30 pounds and with IIH, that should show improvement. and since there's no improvement, that's very uncharacteristic so it could be something else. but also keep in mind that even with losing the weight there may not be any improvement in IIH symptoms' hmm still working that one out anyway I've had insomnia for the majority of my life and only medical marijuana helped. I'd go to bed at midnight and not fall asleep until 3 AM if I was lucky before I tried it. now that I can't be on it, but I am at war with my brain 24/7, I'm sleeping the whole night through better than I have for most of my life 😒 this sounds like a good thing, but I'm still exhausted waking up every morning. my brain can't catch up on rest while it's this bad I still don't have a lot of hope for this shit. and it is IIH, he just doesn't want to say it. we all know it's IIH, it's literally the one explanation and fits all my symptoms. I wish it had been the easiest one to cure and was gone because it's a living hell. gonna continue

working toward my goals and hope my health is eventually as kind to me for this as it's been for the CML I really want to go to therapy to deal with the trauma of the last year and a half but I can't have a conversation, especially not an emotional one, and I can't process or think very well when talking to someone anymore. it sucks and it's scary feeling my brain function is not what it was just two or three months ago. memory 👎 decision making skills 👎 processing questions 👎 mixing things up/confusing myself on the daily? 👍 neuro referred me to a neuropsychologist for cognitive function stuff so yeah. hoping for a miracle at this point anyway, pretty proud of myself for losing weight though and in a healthy way. my neurologist, neurosurgeon and psychiatrist seemed doubtful I could do it on my own, but my 31lbs gone says hey fuck you lmao 19 more to my big first goal! even if it doesn't fix IIH and I have to have surgery, not being obese anymore will make it safer and I'll feel better all around. started at 210 and I'm now at 179 c: sorry for good news and also doom and gloom but s i g h at least there's forward progress in some ways, right?

[awriterfox]

So Today Was… A Day

Dentists, no one really likes them, but for me they have started to hold a very certain type of dread whenever I have to go and see them. It isn’t a fear or needles or drills, but the damage that it seems to do my bank account that leaves me quaking in my boots. This past year has sent that dread to dizzying heights and left me far poorer than I really have any right to be with as many hours as I work. Now, to be fair, it isn’t all my dentist’s fault. My oral hygiene as a child was not the best, but what child really is? On top of that, my parents had their own dental problems and so my father’s benefits (my mom was a stay at home mom) were quickly taken up. That didn’t leave a lot for my and my brother. I’m not sure if they still do this, but when I was in school a dentist would come one day and check our teeth. It was just one of those small mirrors and he took a look inside. Never once was told I had any cavities. I think they stopped that around middle school and since I was never in any pain, my parents never took me. Finally, when I was twenty, I convinced them to take me for a cleaning. I needed 13 cavities filled and a root canal. So all that work was done and I went on my merry way until I got my superhero gig, which comes with benefits. I decided I should establish regular health and dental care, so I found a PCP and a dentist. Nothing came up at the PCP (thank heaven for small miracles) but the dentist let me know I had a couple cavities. Nothing too crazy, I could deal with that, I had dental insurance. They also mentioned that braces might not be a bad idea, as my teeth have always been rather crowded together. If it was just for cosmetic reasons, I would have said forget it, I really didn’t have 8,000 to drop, but when they told me I was ruining my jaw joint and back teeth, I rethought my position. During my records appointment at the orthodontist, he mentioned that jaw surgery would probably be in my future. Apparently, when I was young my bottom jaw stopped growing while my top just kept the course. Now I have always known I have a small chin, but I didn’t realize the reason. It also means that my tongue sits on top of my bottom teeth instead of down on the bottom of my mouth. That was...hard to swallow, but in for a penny, in for a pound right? I set up a consultation. Then the jaw pain came. It was so bad that I couldn’t sleep, a constant ache all along the right side of my jaw. At first they thought it was another cavity and filled it, but the pain came back as soon as the Novocaine wore off. I went back and was informed that it was probably my wisdom teeth. So, on top of going to the orthodontist once a month, I now had to schedule wisdom teeth surgery. Fine, whatever, I have insurance. While I was at the consultation for that, the surgeon took one look at me and asked if someone has ever spoken to me about jaw surgery. He threw in the added bonus that it might be both my lower and upper jaw that needed worked on as well as mentioning that I should see someone to make sure my gums would be fine with the braces. Perfect. Another consultation scheduled and another Doctor seen and another surgery scheduled. The gum graft ended up tapping out my dental benefits for the year and I ponied up the other $800 bucks. Then there was about $700 for the wisdom teeth, and the $250 month payments for the braces and I am about to cry. However, everything was set other than the jaw surgery, this is manageable. Then I went to the dentist today for a cleaning and they decided that they should send my X-Rays to a root canal specialist because there is a shadow on the X-Ray. The doctor called back and said I should go in for a consultation about that and possibly have the root canal retreated. The dental hygienist also mentioned that I might have to do another gum graft after the braces. Two more procedures. My wallet is weeping and I am overwhelmed. That doesn’t even mention my mother got less than stellar medical news today. That being said, I do have insurance and most of the medical health professionals I see take payment schedules so I will manage, probably. However, it has made me realize just how unattainable good oral health can be for people who are less fortunate than I am. Not to mention, this is all technically cosmetic and not necessary. What if I had a broken bone or was in a car accident. People seem to think that insurance stops people from facing bankruptcy when illness happens, but that isn’t the case and when you are living paycheck to paycheck it will ruin a family. However, I am lucky enough that I can take these hits and just need to tighten my belt a bit. It didn’t make for a great day though. Here is hoping for a brighter tomorrow.

May this message find you well ♥ - A.Fox

[iainthinesward]

Surgery and Day 1, Post-Operation

I was scheduled to arrive at the hospital at 6:30am on Monday.  The Friday before, someone was supposed to call me but I never heard anything because they were dialing the wrong area code (I need to get rid of my old 415 area code cell phone some day).  I had enough sense to call the hospital and I got my check-in time.  The weekend consisted of picking up our family (who are here to help after the surgery, and celebrate the holidays with us), dinners/brunches in which I abstained from alcohol, Holiday Pops with the PGH Symphony Orchestra, and final preparations for surgery/Christmas.

I took with me a bag full of books, magazines, my wallet, and cellphone.  I brought my brace and crutches from the original ACL-tear rehab.  The pre-operative staff were friendly and after taking my insurance I went to a waiting room where a very tired looking, elderly volunteer shepherded my wife and I to the pre-operative area, which was already bustling at this early hour.  There was no door to my “room”, but there was a curtain, a moving hospital bed and a TV.  I shut the curtain and disrobed completely, putting my clothes into bags and placing the rest of my belongings under the moving stretcher bed.  I tried to read a book but there were several interruptions.

First a PA came to take vitals and ask a few medical history questions.  I had been concerned about some high-ish blood pressure at my last PCP visit, but my vitals were pristine throughout the entire process (at least that is what my wife the NP told me).  I suspect lowering my caffeine intake allowed me to bring down my blood pressure. Next, a nurse anesthetist came to give me an IV.  All of the staff were friendly and kind, which is nice when you’re practically naked and getting poked and prodded.

My surgeon popped in and introduced himself to my wife and shook my IV’d hand.  He was very positive and upbeat and cut to the chase, “let’s get you out of here and start rehabbing”.

Soon, the anesthesiologist came into my room and remarked about my book choice (Harlan Ellison) and I corrected him when he misread autograph as allograph from the surgeon’s notes. He gave me options between a single-administration 12 hour nerve block and a pump that i could take home with me and administer over several days.  Given that the pain hasn’t been very bad since the surgery, I’m glad I chose the 12 hour block. 

The nurse came in eventually and gave me a cocktail of oral drugs including morphine, some calming meds, Celebrex, and I believe a stool softener.  Next a smidge of some anesthetic was pumped into my IV.  At this point I had articulated my name, DOB, and type of surgery at least 6-7 times and my perception of reality was starting to change.  My wife gave me a kiss and headed out to the outer waiting rooms.

Two folks introduced themselves and they lurked around for a while and then finally said “It’s show time” and I was wheeled down the hall.  I remember asking “What are those things?” and the staff explained that the red containers on wheels were suction receptacles. “Everyone asks that”, they said.  I relaxed knowing that I was just like everyone else.

The Operating Room was very bright and there were many people in lab coats milling around.  Some folks introduced themselves and I shifted myself from the moving bed to the operating table.  Then I remember a mask going over my face and everything went dark.

My next memory was gasping for air.  I could hear people rooting me on and eventually I had stabilized my breathing.  I think I was in and out of consciousness until I made it back to the non-operating room.  There, a nurse gave me ginger ale on ice and my wife came to greet me.  The surgeon had called her and reported that I had no evidence of arthritis or any other damage and it was a straight-forward ACL reconstruction.  Someone had attached my brace to my leg which is to remain on until my first physical therapy appointment at least.

I rolled out to the car with my crutches and I was informed by the transporter that a train crash in Washington had killed several people - so I felt even more lucky given my fears related to going under the knife.  In the back of the car, I propped my legs on two pillows and we drove to the pharmacy to pick up some a stool softener and Percocet.  I had already loaded up on over-the-counter Advil for pain and Bayer aspirin for blood thinning.

Since being home, I’ve been using the electro-therapeutic TENS unit (the pads were placed under my bandages before I left the OR) as well as an icepack compression pump.  I’ve been propping my leg up in bed and rotating between Advil and Tylenol.  I can get around on crutches and I can put weight on my operated leg, but I’m trying not to overdo it.  I still have my brace on and have been flexing my quad and doing leg lifts, but all the other physical therapy exercises from my discharge instructions look a bit ambitious at this point.

I was expecting the pain today to be unbearable, but it really hasn’t been bad.  I took the Percocet last night to sleep but i’m not sure that I really needed it.  The 12 hour nerve block may have extended into today or perhaps the pain will have a ceiling.  I did a lot of preoperative leg lifts and rode my bike for months. Since I had a year to heal my original injury, I felt physically prepared.  The original injury hurt way more than the surgery has, but maybe I’ll feel differently once we remove the bandages and I can see what my leg looks like.

[shrekshugebadussy]

2017 has definitely been a year for me. it started off normal until about june. i went swimming with some friends and i got sick afterwards. my throat hurt and i was coughing. i had water stuck in my ears and they hurt, thinking they got infected (i used to always get ear infections when i was a kid. my ears don’t drain well). i went to urgent care and they took care of it. i then started feeling better and my cough went away and my throat started feeling better. and just when i thought i was going to be alright for good this time, i ended up fainting 3 times while at work.

i’ve fainted before when i was younger, but this time was different. i’ve never felt the heart palpitations before and definitely have never fainted more than once back to back like that. after i fainted the first time and i came to, i looked around and realized that i had actually caught myself from falling flat on the floor. but, thinking, “oh man not again, well, i should be fine now considering what i’ve done in the past.” nope. my head felt a little weird and i knew something was a little off. but i was very confused in the moment and i could really think for myself properly. my manager got me a chair and i got up and sat it in. i immediately felt worse and things started going black again. the next thing i know i’m on the floor again, this time face flat against it. my glasses got scratched and i ended up cutting my cheek a bit on my glasses. my initial reaction after coming to is to sit up. idk why. i just do. anyways they lied me back down on the floor and said they were calling 911. again, i was confused and couldn’t make the proper decisions for me, so i was like, “okay.” they thought i was having seizures by the way i was convulsing when i was out, but after i got up myself and got on the stretcher to go out to the ambulance, things started to get black again and i felt like i really wanted to sleep. i couldn’t keep my eyes open and i felt so weak and tired. i ended up fainting again while on my way out the door. they already had the monitor things hooked up to me on the stretcher so they saw that my heart rate dropped into the 30s when that happened so they knew it wasn’t seizures. i was fine afterwards after he had put an iv in me. i ended up staying in the er for about 8 hours and all they could tell me was that they couldn’t find anything wrong.

so i went home and i ended up spending the next 2-3 weeks recovering. by that i mean i got a week off work and had to go back in the second week even tho i still felt dizzy and like i wanted to faint at any moment. i didn’t, but i was only able to stay 3hrs a day that week. i pushed myself thru the lunch rush and then told them i needed to go home. the next week was better and i was pretty much fine after that. i never felt 100% since then tho, even tho most days were close. about august i ended up having some heartburn problems (i think it was. the zantac worked so i’m assuming it was). i wasn’t eating much anymore as my appetite seemed to have died when i fainted at work.

september came along and i started feeling acid reflux and heartburn again. it was kind of brutal but i started feeling better about halfway thru the month and i was going fine. but then i started running out of money and my appetite kind of went away again. i started to get so low that i wouldn’t go to classes if at all for a couple weeks. i didn’t even bother to go out and get groceries, meaning even if i wanted to eat i had nothing. i never realized how dehydrated i was either. until homecoming weekend in mid-october.

after the game my roommates’ friends came over and we all drank. it was an... eventful night, but it’s not really my place to talk about it. i drank more than i ever had in my life (which is nothing, i’ve never drank enough to get buzzed before so it wasn’t that much). i got buzzed this time and when i woke up the next day i could tell something was off. i didn’t even think that it was maybe dehydration and then drinking on top of that making it worse. i ended up going through the week feeling absolutely shitty. i would sit in class and just feel so weak and fatigued that i could barely lift my arm up without feeling like i was putting all my energy into it. i tried drinking more water but i think i was already so badly dehydrated that my body didn’t want to retain it or something. it ended up being that thursday of the week that i woke up and knew that day was going to be different. i was at my wits end. i decided i was going to go to health services on campus here, but i didn’t think i was going to be able to drive, let alone i also didn’t want to go alone. i was lucky enough i got a friend to take me. but then they said i had to have a referral from my pcp in order for them to take my insurance. i didn’t have a pcp, and the insurance place told my mom they couldn’t do anything unless i had that referral. so, as i’m sitting there trying to get things figured out, i felt like i was getting worse by the hour of the day. i was losing my patience and i felt horrible. i ended up telling my friend to just take me to urgent care.

when i got to the urgent care, i walked in and told the lady what was going on. she just looked at me and said reluctantly, almost, that with the way i’m feeling and the limited resources they had there, that i needed to be at the ER. so i went to the er and i had to explain myself again and again. that was when they did more tests on me to compare to june’s and the only thing they could notice was my heart rate being high. especially when i stood up.

they had me do the lay down, sit up, stand up test like 5 times throughout the 5 hours i was in the er. (actually the last three hours i think was when they really noticed it and kept testing it). they noticed that when i stood up, my heart rate spiked into the 120s and didn’t want to come down. after 2 ivs in the er, i was starting to feel better, but they decided to keep me overnight for observation on my vitals.

i got no sleep that night. i tried my best but i was so uncomfortable, out of my element, alone, and worried. i could hear other patients in the rooms next to me everynowandthen. at one point of the night i heard beeping and a nurse running down the hall (keep in mind i was in the cardiovascular part of the hospital stay or whatever). i kind of freaked out a bit and i just couldn’t rest. (i heard the nurse ask if he was alright and he said he was okay so idk). i also had a roommate. even tho we had the curtain to separate us, i still knew she was in the room with me. i was kind of uncomfortable with that too. i didn’t want to wake her or disturb her or anything. she was already having a lot of unbearable chest pains and all. plus, out the the 20 some hours i was there in that room, no one came to see her. i felt so bad for her. (and this wasn’t her first time in the hospital for cardiovascular events). i felt so bad for her.

anyways, i was so tired the next morning and i felt sick to my stomach. i really thought i was going to puke. they came in with breakfast and i tried my best to eat, but i couldn’t eat much. i eventually stopped trying and just laid there, suffering. my vitals thru the night were normal, but they were high normal. like, 80s-90s when laying down. when i got up tho, they still spiked into the 110s-120s. and i was already on my 4th bag of fluids. one doctor eventually came in and took an ultrasound of my heart. everything looked normal to them. the only thing they noticed (with other tests, not the ultrasound) was that i had an inverse of... some kind of waves, idr what they’re called, and one of my valves opens differently than normal. but, it’s not of any concern as they told me it’s just something people have. (learn something new every day huh?)

anyways, the cardiologist finally came in to see me after my mom got there. he started talking to me about how i felt when i fainted in june and all that. he said that it sounds like i had vasodeppressor syncope (idk how to spell it) in june and that it probably turned into POTS, considering most, if not all, of my symptoms were of pots. so he did his normal checking routine with the stethoscope and feeling my ankle and said that everything is working like it should, just why my heart rate is so high was a little confusing cuz i had 4 bags of fluids and it wasnt calming down like it should. he ended up giving me the lowest dose of metoprolol tartrate to see if that would work on calming my heart rate. if not then i would be put on the table. i really didn’t want to be put on the table. and i had really bad anxiety whenever the doctors would see me, so i shook a lot, and my heart rate when up during that time :/ but 🤷🏻‍♀️. after about an hour or so, the cardiologist came back and said that he liked where my heart rate was at (in the 70s now) so they released me that friday evening.

i went home, like, all the way home back away from school. i had my medication now and i was ready to get some rest. the only thing tho, was that i must’ve been so exhausted that i fainted again. i walked into my house and stood at the counter for awhile. i was reading the side effects and what not for my new medication and when i started reading about some of the side effects that could be dangerous idk why i thought i showed some but i started freaking out a bit and the next thing i know i’m fast walking to the living room trying to take a seat before things start going black on me. i only made it to the archway when things started going black and i said so out loud as my mom and brother were still in the kitchen. i must’ve made it to the couch tho cuz the next thing i know i’m sitting on the couch, hands on my cheeks repeating, “oh my god oh my god,” while my mom was in front of me consoling me. i didn’t come back all the way right away (if that makes sense). like. i went out and when i came too things were still partially black and my hearing felt like i was underwater and i could hear ringing. (no heart palpitations tho). i must’ve went out again not too long after that cuz then i remember sitting back up and my mom still consoling me telling me to lay back down. i was at a weird angle on the couch but i felt so tired and weak and i was afraid if i moved or even tried to get up i would faint again. we considered going back to the er there in lansing, but i seemed to be fine after the second event. my mom had never been around me when i fainted before, so this was new to her and it scared her (sorry mom). she said like what the others have told me when they watched me faint: my eyes roll back into my head and i start convulsing. which is weird cuz i don’t feel anything or hear anything or see anything, whatever. i just assumed i become limp and my eyes are closed 🤷🏻‍♀️. anyways, my grandma was called (she was with me when i was at work back in june) and she came over and they watched me for a bit. i’m sure my brother was scared too cuz he’s never seen me faint since we where kids. anyways, my mom called the nurse back from the hospital near my university and the nurse said that since i’m not a patient there anymore that she really couldn’t say whether or not i need to be back at a hospital. my mom had taken my heart rate when i was coming back and all that. i seemed to be fine, so my mom camped me out on the couch there and she slept in the chair next to me that night.

i slept fine that night. and even tho i was still not definitely 100%, i was just happy i got some sleep. i still felt super dizzy (my medication didn’t help majorly with this part) and i had trouble walking and standing for long periods of time as i was afraid i was gonna faint again. my mom helped me to the bathroom for a couple days and at the end of the week i ended up being alright to go back to school. i ended up not going back to classes right away tho cuz i still felt crappy and i needed to get used to the fact that i was back at school, alone and away from my mom/comfort.

then, halloween day, i had my first doctors appointment (and second technically as both were scheduled on the same day). i went to this one guy who is probably going to be my new pcp. the next one was the cardiologist. the pcp guy prescribed me prozac and both doctors said i was good and that they’re glad i’m doing alright. the cardiologist was happy with my heart rate and he told me he hopes i don’t have POTS cuz there’s no cure and it’s a headache to treat, but he would pretty much have to put me on the table to find out i’m afraid. anyways, i started prozac the next day and over the next couple nights i started to lose sleep. i couldn’t sleep no matter what and i was starting to feel absolutely exhausted and weak that i could barely walk to the bathroom without feeling like i could pass out. plus, my room was so freaking hot and i couldn’t open my window cuz a spider was in there so just fucking rip me i guess.

i eventually cracked open the window and my friend got me some melatonin that was able to help me sleep. i was able to get the spider with some spray but i got it on my finger and i went to wash my hands good, but when i was about done things started going black again and i somehow made it to my bed before i fainted so i was able to save myself. i lost my appetite throughout this whole weekend and my stomach hurt really bad. it ended up hurting most at night and the next morning i had gotten sick. only, there was basically nothing for me to get rid of. after i started getting some sleep i started feeding myself more (forcefully) and i drank more. i found a way to take my pill that was easier than trying to swallow it cuz at the time i couldn’t swallow it and i wasted one because of it. i ended up putting it in applesauce and i ate it that way for weeks. but, i had to force myself to eat cuz nothing sounded good and every time something went in my mouth i wanted to gag so it was rough. i eventually grew out of it and then i was able to eat well and drink more.

i missed classes for about a month. i have no motivation or ambition to get caught up on the things i’ve missed, even tho i’ve tried and succeeded on some. i’m failing about 3/4 or even all four of my classes. but i just can’t bring myself to care. i just want to go home. i haven’t been able to get a job bcuz of my condition and so i’m basically broke and idk what i’m gonna do. i felt pretty shitty this past week and today i’m actually feeling better but who knows how long that’s gonna last. i can try to get a job but idk who’s gonna take me with this condition and depends on what i can do cuz i ain’t going back to mcdonald’s where i’m on my feet for long periods of the day doing constant activity. i would faint again. i know it. and, i can’t just stop taking classes cuz then i would really have to get a job to start paying off my debts.

i can definitely say it’s been a year, but i guess i can’t say it’s been a bad one. (tbf id say the worst year was when my grandpa died and then my other relatives after that but anyways). i did get vip tickets to see my favorite band and even tho i wasn’t able to go, my friend picked up my items for me. and, i did come out to my mom and things haven’t changed between us so that’s good. she accepts me and just wants me to be happy and healthy. so i mean, this year hasn’t been horrible i guess.

sorry this was so long and if anyone even read all of this i thank you for taking and interest in me. i hope 2018 will be better for me and everyone else ❤️

[spiritualgravity]

A Dance with my Daughter

When I was pregnant with Isabella, I would play classical music for her through something called “Belly Buds.” My dear friend gave them to me as a gift. My husband absolutely loved the idea of having her listen to music while in the womb. If it wasn’t for him, I would have forgotten to do it most evenings. While I watched TV or read a book, I’d put the buds up against my lower belly for 30 minutes.

My pregnancy, from start to finish, was incredibly challenging — both mentally and physically. The labor was also incredibly challenging — all 36 hours — both mentally and physically. It seems that this challenging journey to parenthood was a glimpse into what was ahead.

As a first time Mom, I had absolutely no idea what to expect about caring for, and keeping a newborn baby, alive. Notice I didn’t say keeping a baby…happy. You see, I quickly learned that I had to lower my expectations. The first 3 months of a baby’s life is considered their 4th trimester, it just happens to be outside the uterus. They aren’t used to the bright lights, cold air, and freedom. The goal is to try and recreate their life inside the womb as much as humanly possible until they get adjusted.

When I would talk to my business leadership coach that my company generously pays for me to have a one-hour talk with every month, I would explain that I simply could not plan running and maintaining my at-home, entrepreneur-style business because I did not know what the first few months would be like. How could I know if I would be able to attend a video conference call if the baby was breastfeeding? How could I know if I would be able to attend a 4-hour training event if the baby wasn’t able to nap? So I decided to grant myself a self-proclaimed 12-week maternity leave.

My gut instinct was correct. I truly had no clue on the deepest level what this experience would be like. When an innocent bystander, family member or friend would ask as early as week three, “So, are you on a schedule now?” I felt an ulcer develop in my soul. Or my favorite suggestion, “Sleep when the baby sleeps.” I happen to have a baby that, coincidently, doesn’t fancy sleeping. 

Very early on, around 2 weeks in, we realized we had a special needs baby on our hands. To name just a few superlatives, Bella has reflux (this means she’d scream in pain when acid would come flying up her esophagus / throat, was very uncomfortable, and spitting up was quite common). The pediatrician prescribed a medication that seemingly did not work. We were told that there was essentially no reason to keep playing with other medications because if the first one did not work, then none of them would and she’d have to outgrow this condition hopefully between month three and month six. The doctor also explained that recent studies have shown the risk of keeping her on reflux medication long-term outweighed the immediate result, which wasn’t much. Bella is also considered colicky. The definition means the baby is younger than 5 months old, cries for more than 3 hours, 3 days a week, for 3 weeks straight. There is no cure or treatment for this, either. Sure there are dozens and dozens of gadgets and gizmos, but none of them really made a big difference. Bella is a very poor sleeper, both day and night. In addition, Bella has an intolerance for dairy, eggs, and soy. I could write a dissertation about what this experience has been like for me, eliminating lots of foods (which as it turns out, everything processed has soy in it), but I’ll save you the pity party and raise you a piece of mozarella cheese instead.

Our baby would not sit or lay in any kind of contraption that lines our house from wall to wall. A Boppy Lounge pillow, a swing, a bouncer, a bassinet — nada. So, for the first 4 weeks of her life, she slept on top of me. Which means, I did not sleep for 4 straight weeks. I also held her during daylight hours.

We finally got her to sleep in a Rock ’n Play, which after consuming an embarrassing amount of product research, I swore I wouldn’t let it be her main sleep device. It’s only meant to be a napping tool. That went out the window once our sanity was on the chopping block.

Speaking of naps, I just put baby down 12 minutes ago for a nap, and she is waking up now. This has been our reality. Essentially, every text book baby manual has been the complete opposite in our storybook. Newborn babies “should” sleep for approximately 17-18 collective hours. Ours would sleep for about 10 hours. That’s 14 hours of keeping a baby alive — not happy — who did not want to be put down in anything.

It turns out I am now ambidextrous; I learned how to use my left hand to eat, text, and type. Miss Bella was attached to me around the clock, and still very much is today.

By weeks 5-6, I was acutely aware of why sleep deprivation is used as a torture tool. I would cry, a lot, out of frustration. And complete and total exhaustion.

At this time, I randomly developed a horrible eye infection. I went to a primary care physician’s office, which happened to be the day before my 6-week OB/GYN postpartum appointment. The PCP was a new office closer to home, and so I had to complete lots of new patient paperwork. When the nurse was going through the paperwork and asked me a series of questions, it turns out she inadvertently diagnosed me with postpartum depression. When the doctor walked in, before even addressing my one-eyed-monster face, she immediately informed me that I was flagged for “moderate to severe PPD” and nearly threatened me, in the kindest way possible, to make sure I talk to my OB/GYN about it the next day. Lovely.

The one time I could have used support, the critical people in our lives — our two mothers — were both unavailable due to extreme circumstances. My mother had 2 major back-to-back surgeries and was bed ridden at home while she recovered. My mother-in-law lost a family member who lived overseas and she left for nearly 2 months immediately following Bella’s birth to spend time in her home country and mourn the loss. I have never felt more alone in my entire 38 years on earth. My husband and I were on a deserted island, together, and  stranded without any relief in sight. Friends would stop by here and there to meet the baby and drop off a dish of food, and it filled my heart with happiness to know that people were thinking of us. But, there is nothing that replaces a mother’s hug or hand of support. Nothing.

The next day I was given a prescription for Zoloft. The best part of this story is, Zoloft’s side effect was insomnia — the very cause of my PPD. The fluctuation in hormones I’m sure plays a part, but I’m convinced staying alive AND keeping a baby alive without much sleep is the ultimate culprit.

After giving this medication 4 weeks, I recently switched to another medication, which hopefully will allow me to get into REM sleep again when Bella gives me the limited opportunity.

I am not ashamed to share my story, feeling depressed, because it’s actually quite common. Many women in my life have admitted to me that they think they had PPD after giving birth, but never talked to anyone about it or received help. One in seven women suffers from PPD but 50% are never detected. I was prepared to have “baby blues” which happens the first two weeks after delivery, but never PPD.

We just crossed the 9-week mark with our little girl and continue to face pretty significant challenges, particularly in the sleep department. She has FOMO — Fear of Missing Out. She hates going down for naps. We have to rock her to sleep with white noise and most times, she’ll fight it with all of her might. This process has become nothing short of debilitating. My lower back is in knots, and my heart is ripped out on the regular trying to console this little one while she screams bloody murder and tries to wiggle her way out of our arms.

I have read books, downloaded baby development apps, absorbed thread after thread on Mommy message boards, been added to multiple Facebook Mother groups, and feverishly texted friends who have come before me with similar baby issues. If there is a trick, I have tried it. I have even been acutely aware of my own energy to make sure the anxiety is not rubbing off on the baby, to the best of my ability.

She is “healthy” as far as growing and her overall condition as a tiny human. For that, I am eternally grateful and know that others have it much, much worse with terminal or chronic conditions. But the struggle to survive has been real, day in and day out and has taken a massive toll on everyone living under our roof. Someone recently told me about Unicorn babies, and Dragon babies. Unicorn babies are the ones you hear about when the parent says, “Baby XYZ was SO easy. I was lucky.” Bella is a Dragon baby. She is stubborn, strong-willed, breathes fire, and is super duper needy.

Last week Bella had some kind of divine intervention because for one week she got all the way up to 6 consecutive hours of sleep in the evening, and a few days of a 90 minute nap vs. her usual 30 minute naps. But this past Monday she received her immunizations and has spiraled downhill ever since then. The last 3 nights have sucked the life out of me, and this morning at 6:45am, I sobbed. I sobbed while gasping for breath. I couldn’t stop crying for nearly 30 minutes.

I cried for all of it. For my marriage which has been put to the test due to an inordinate amount of impatience. For particular people in my life who haven’t been supportive and only caused additional stress. For being trapped in my house for 2 months {she hates, hates, hates the car seat and car rides}. For being a prisoner to feeding my daughter as an exclusive breastfeeder and suddenly decided she did not want to use a bottle which was my only source of relief from time to time. But mostly, I cried because I am so damn tired.

When it was time to “rock” Bella for her mid-morning nap today, I had just gotten off my monthly business coaching call and still had my Apple Airpods in my ears (wireless headphones). I had an idea. I would play a Pandora music station on my phone and stream it through bluetooth in my ears. Maybe, just maybe, listening to music turned up extra loud in my ears would drown out her screams and make the 15-20 minute experience of willing her to nap a little bit more tolerable. I prepared Bella by putting her in her sleep suit since she loathes being swaddled, and got the iPad white noise app ready too. I hit play on Pandora, and classical music began.

I evidently have not listened to music since I was pregnant and played it for Bella in my belly.

I put her head on my shoulders and held her across my chest, bracing myself for the inevitable. Instead, she fell asleep. Right away. She closed her eyes, and fell asleep. No crying. No tears. No kicking. She just drifted off to sleep, instantly.

But I didn’t put her down right away. 

I danced with her. I listened to the beautiful music of gentle instrumental piano sounds, and slowly waltzed in circles with my 10 pound, 11 ounce baby. And I sobbed. I sobbed because this morning during my 30 minute cry fest, I prayed. I prayed for mercy. So now I sobbed from gratitude.

I danced with my daughter and swirled around with her in my arms for several minutes while she was sound asleep. That moment with her was everything, second to her smile.

[heartlikeatincup]

I’ve been pretty depressed lately.  Like, majorly clinically depressed.

The first time I experienced this I was 13 and I had just found out that my father had been extremely abusive to my mother.

I’ve never met my father. I’ve always known that he wasn’t the greatest guy on earth, but I never knew the details. Let’s just say he’s a piece of shit who doesn’t deserve a dick. Or, maybe he only deserves a dick that resides in a cock cage someone lost the key to. This is the type of information most 13-year-olds (understandably) cannot handle.

I was one of those 13-year-olds. For months I felt completely awful and worthless because, in my eyes, I was conceived in the worst possible way and didn’t even deserve to be alive. Of course, as a most 13-year-olds are wont to do, I wasn’t looking outside of myself. I wasn’t taking into consideration the fact that my mother chose to give birth to me and raise me on her own (until she and my step-dad (her old high school sweetheart) got together). She and I were also fighting at this time (as most mothers and 13-year-old daughters do), so every fight made me feel horribly guilty that anything I did wrong or any act I committed that had even the slightest implications of selfishness would remind her of my father and make her hate me (even more than she already should have).

In short, I spent several months telling myself that I didn’t deserve to be alive and internalizing responsibility for something someone else had done. On top of that, I started having recurring nightmares in which a(t least one) strange man was following/chasing me with the intent of raping me if he ever caught me. Thankfully, I always woke up. But those dreams tortured me.

It helps to know that I was also being “home-schooled” at this time, which in many ways was actually more like self-schooling, as my mother found several curriculum books that I taught to myself, and I took courses online.  Now, I wasn’t fully isolated, because my mom did find a home-schooler’s group that we became a part of, but I was left to my own devices a lot of the time. The two years I spent unschooling are simultaneously responsible for my ability to be self-driven and my desire to throw self-discipline out the window entirely.

During this time, my mom was starting a business and my step-dad was working full-time as a salesman for some IT company, and he was traveling at least 3 days a week. So, my depression went largely unnoticed.

I wasn’t showering, I no longer had any interest in spending time with my best friend (ours was the type of best friendship where our respective parents basically shared joint custody), I was staying up all night and sleeping all day, and I spent 97% of my time in my room on my computer. The other 3% of the time were forced family dinners. Additionally (although I think it goes without saying), I was listening to a lot of emo/screamo and pop punk at the time.

Luckily, one day I woke up and it felt as if my depression had vanished. It was as if the veil of darkness that had been covering me for months just disappeared. I don’t remember how this happened. I do remember starting to try to focus on small things that made me happy. I got this tip from my mom, who must’ve noticed something was wrong but didn’t really want to deal with the why (I think she knew the why). I started being grateful for my feet, or my pets (god, was I ever lucky that my mom was indulgent with animals), or a song. I guess enough days of that helped my brain start to work properly again.

Everything was pretty good for a few years, but the dark period was always in the back of my mind. During that first episode, I had essentially told myself that I wasn’t ever going to amount to anything. I think I still have a few years of therapy ahead of me before I shake that mindset.

I felt pretty okay for a while, until my junior year of high school. I started sensing that things were going south in my mom’s marriage, and I began to act out. This time, I was sent to a therapist. I hated her. I didn’t go for more than a few months. Eventually, we found a new one, and I liked her. I don’t remember why I stopped going.

I went through several more years of trying to ignore my bouts of apathy and despair. I spent a solid year and a half self-medicating and getting myself too intoxicated to function in an attempt to block out all the things that made me depressed or anxious.

Eventually I made a shift in my mindset. I got tired of trying to numb myself and started trying to face my feelings. I started seeing the therapist I liked again. I realized that as I had aged, she no longer suited me. She was more like a cheerleader than someone who was helping me work through things. She did talk about doing some sort of regression therapy or CBT that was of the new-age type where I had to follow her finger and it would help release all the shit stored in my animal brain. I wasn’t ready for that, so I stopped keeping my appointments.

Shortly thereafter, I found a new therapist. I loved her. At this point, I was suspicious that maybe my depression was actually a symptom of or a co-occurring disorder with ADHD. I’ve read a lot about ADHD in women and girls and how it often goes overlooked because it doesn’t present in us the same way that it does in men and boys. This therapist said she thought I was solely depressed, and advised that I go to my PCP to get on an antidepressant.

I was prescribed Prozac, and I stayed on it for a few months, and it helped with my anxiety, but it made me incredibly tired, so I stopped taking it. I continued to go to therapy for nearly two years. I stopped because I was playing stupid sex games with a stupid guy (another story for another day, but still indicative of my mental illness). I missed an appointment and I never went back.

That was over a year ago. Now, here I am, and again I’ve found myself nearly too depressed to function. I recently had my tarot cards read and the reader asked if I had been through a depression. I told her yes, and she said, “well, you know what to do now, so you never have to go back there again,” so when I realized I hadn’t been able to clean or get out of bed except to go to work or get groceries for over two weeks, I decided it was time for meds again.

My doctor put me on Wellbutrin and so far it’s been okay. It’s only been a week so I know I’m still adjusting. It feels like slowly walking out of a deep fog. It also feels promising. I’ve been doing things around the house after work instead of getting right into bed. I’m writing this right now. I have been experiencing some side effects akin to confusion and fatigue, but I’m hoping they will go away. I talked to my doctor and she said it’s probably just temporary and to call her again in a week.

I really hope this is my magic pill. I want to leave that fog behind for good. (And yes, I will be going to therapy again.)