Manifest some goals with me.

It has been a long six years since my AFE and I have struggled with a purpose after it. Everyone tells me "you're here for a reason", and that's great but nobody tells you what's that supposed to be. It not like you survive death and you're given a card telling you what you haven't done yet, you know? 

So in that theme, one of the things I am currently working on is working through advocacy training for MoMMA's Voices, more specifically, the Patient Family Partner Certification Training. It teaches you how to take your story and use that to help other moms and families who are entering the birth trauma circle. I might be six years into this, having gone through many ups and downs, but somebody somewhere is right now going through it and feeling incredibly overwhelmed. 

I may not remember anything from that time, I know that Matt does and he still struggles with feelings from it. Nobody knows what to do when their spouse dies and comes back, but doesn't come back fully alright. 

My hope is to somehow help other women and families wade through overload of feelings and information. I do remember not really understanding what happened to me, so I was Googling everything that I could about amniotic fluid embolisms, birth trauma, depression, all of the things. Everybody encouraged me to not do that, just move forward, focus on being lucky to be alive, and I just couldn't do that. I really needed to understsand what had happened to me and why I don't feel any better, why do I not feel lucky? 

Some of the things I'd really like to do is a blood drive, and possibly turn it into an annual thing. I'm terrified to plan it and have nobody come, you know? I'd like to turn it into something to highlight birth trauma and the resources available to them, locally but also online. I know the absolute relief I felt when I found the AFE Foundation and support group online. Having an entire group of women who also had an AFE to talk to and ask questions of? Priceless. 

I'm trying to think of some other things I can do to be helpful, but also not require a lot of time. Realistically, I know that health wise (energy, overall feeling, and mental health) I am not reliable. I hate that, but I do know that is something I deal with now and am getting better at recognizing my limitations. 

So that's where I am. I'm trying to get better in life. If I'm going to be here, I may as well do something, right? I don't want to go the rest of my life, however long it is, and not be able to say I did something with my life. I want to see and do some things. I've told some friends that I really just feel this urge to finally do the things I've thought about, like now is my moment. I trust my gut, so here I am. 

Medical Update: PTSD, diapers, almost diapers, and more!

I haven't given a proper medical update in... months. Honestly maybe even a year. I will be all over the place, but as always, if you have questions, feel free to leave a comment, email me, message me on IG, and I'm happy to do my best to answer them. 

Well, the best way to start the year is with a broken mirror, am I right? Well this was this summer courtesy of Pickles and it is still right there and it is still just as broken. At this point it really just feels like a metaphor for my life, you know? 

Let's talk about PTSD though, because I am finding out that lots of people don't actually know what it is. To be honest, I would have been in that group because when you think PTSD, I think we all automatically think combat veteran struggling when they come home. Right? I remember maybe three months-ish after having Lucy my doctor flat out held my hands and said, "You aren't crazy, you have PTSD. This is normal." I know I huffed, and I refused to believe it. 

Until stupid things would happen and I would find myself struggling, sometimes out of nowhere, and I didn't really have any other explanation for it. I've been in therapy for six full years now and I am able to recognize my triggers, I have coping strategies for different situations, and I also know how to manage my self-talk so I don't get to the point of needing the coping situations, if that makes sense. 

Cue December. 

Olivia and Jackson were finishing up their senior project hours for school, which was them participating in the Penney's From Heaven project. Different businesses in the community have Christmas trees full of tags with items the family(ies) chosen need. It's always a family (or multiple families as donations allow)who have been hit with especially hard times outside of their control. (We were a recipient in 2016, the same year we had Lucy and it's been important to our family that we give back, very much a pay-it-forward for us.)

We bought a lot of items, lots of different tags and I didn't even look at the tags I was picking up. One of the tags was a pack of diapers. Now, a normal person would walk in, grab the diapers, and keep it moving. Not me, lambs! 

Instead, I break into a cold sweat, that turns into a gross, weird sweat, my face, neck and chest turn read, and I start shaking because I feel like my blood pressure is going out of hand. Enough for Jackson to notice and nicely ask what the hell is wrong with me. There isn't anything wrong with me, I'm just freaking out for whatever reason. Baby things are really hard, even still. 

Also hard? The OB office. I hadn't been in here since November 2016, where I had the worst panic attack I had ever had (except I didn't know that's what it was). I learned that it isn't OK to break out in tears and tell people I died having a baby, and that they might die. Yup. I'm not even kidding. 

Fortunately, this time when I had a panic attack, I was steadily going through my coping things and I was able to get through the time in the waiting room. I cried, but quietly, and not to the point that I'd scare anyone. I do need to have a follow up OB appointment but it'll be in a new office so that was officially the last time I would ever see this waiting room. Which is bittersweet. *sigh*

Let's talk adult diapers though. Thankfully, I am not there. My god, I'm only 40, almost 41. I will say that four children has really taken a toll on me but also, the last two were REALLY hard on me and my insides. (I'm not naming anyone specifically, but Penelope was the largest baby, so..) None of my abdominal muscles do a damn thing so it is a surprise to nobody that it is the worst experience having a chest cold when your bladder and muscles have become squatters doing nothing in this house. Every time I would cough, I pee. Sneeze? Pee. God forbid you get the combo of a sneeze/cough, big trouble. I also have no idea where the hell it is coming from because if I pee, you'd think there would be nothing to sneak out, right?? RIGHT?? 

WRONG, loser. Wrong. 

Enter the incontinence pads and the little old lady doing me a solid at Target. Not only did I hear her entire journey from romps in a car with her husband when her hip was still good and he was alive, how she has three children but only one is grateful and in the will, and she's onto full diapers herself, but helpfully pointed me to the pads she recommends. (And then told me to get diaper cream because I might chafe and that it is no fun.) (I did not buy the cream and it was no fun.)

So that's where I'm at now. 

Between that now wishing I took eye serum more seriously in my early 30's because I'm paying for it now, that's for sure. (Get a good serum, ladies! Moisturize your damn face! Wear sunscreen!) My eyelashes are lightening, my hair is changing, my skin is thinning, wrinkles are popping up, and I feel like I'm in that weird zone that people panic in. I'm scared to get old, but I'm also not going to sadly cling to the youth that is packing up and leaving out the door. It's funny how we were desperately to be a grown up and now here we are and we want to stay young. 

Crazy times. 

But stay tuned because this coming week I'm going to update medical stuff by specialty, because I have hit them all, I think. Well, no. But if this was a Girl Scout badge, I'd have a pretty full sash, we can say that. 

Where oh where has Sara been?

I get lots of messages from people asking where I've been, how is my health, how am I doing (besides reading), how are things? And for the most part you'll get the, "Oh... you know... the same..." and I'm rather vague.  

Because honestly? I really don't know how I am doing. I have had a really chaotic year in terms of health stuff, doctor visits, lab work, and crying in my car and/or closet (depending on the day). Let us start with November 2021 though, because I feel like the latest series of events kind of kicked off around then. 

Since my AFE, I have had a series of awful medical things happen and I know I used to do a good job at updating things here, but honestly, it feels like it is coming at me fast and furious all of the time and I really don't know my ass from my elbow some days. It's not so much that I am getting diagnosed with new things, but the things that I have been diagnosed with are changing, getting worse, or kind of morphing into something else, but nobody is actually sure so we wait. What I have consistently dealt with though are things that I could narrow down to a few categories: 

• Fatigue: Guys. When I say fatigue, I'm not talking about the, "I wish I got more/better sleep, I'm really dragging ass and could use a nap" kind of tired. I'm talking about the kind of tired where you're totally fine and functioning and all of a sudden (literally), you feel like the Energizer Bunny as his batteries die down. It truly is like everything around me turns into slow motion, things sound far away or like I'm in a tunnel/under water, and I truly feel like if I do not lay down RIGHT NOW and sleep, I am going to collapse. As it turns out, I actually will fall down and sleep. Why? Nobody knows! 
• Vomiting: Why people choose to vomit meals daily, maybe even multiple times a day, I will never understand. I go in random stretches of feeling totally fine, I can eat like a normal person and things will be OK to being a person who walks around her house carrying a red bucket and never leaves the house without a plastic Target bag (or ten) because I will puke out of nowhere. Think about food because I'm hungry? Puke. Try to eat a meal? Puke. Have to go pee? Puke. Want to take a shower? Puke. Answer the phone? Puke. It literally phases nobody in my house anymore, mom just pukes and we plan around the what ifs. I'm not even puking food anymore, it's bile, and then whatever the thicker, almost pudding like bile that comes after regular bile? Whatever that is, it is absolutely disgusting, never in my life have I ever experienced that and once that starts, then I'm in real trouble because I'm going to pass out. In other news, if anyone is looking for a good gift idea for me, a really good kneeling pad for next to the toilet would be awesome. Currently I'm balling up towels and that's not really doing it. The only thing I know I can always keep down are Wheat Thins. I will almost always have Wheat Thins in my purse (like a whole ass box or bag from the box), on side tables, next to my bed, literally everywhere. You know how an alcoholic would hide alcohol? That is me... just with Wheat Thins. 
• Dizziness/Double Vision/Everything is a Merry-Go-Round: Honestly, this is the most unpredictable, and easily the worst, thing that I'm dealing with. Sure, fatigue sucks but I can take a nap and usually feel functional. Vomiting is not awesome, but I've got a bucket and Wheat Thins, come at me, bro. Dizziness though? You are actually totally fucked. There are medications of course, none of which work so I don't even bother. I could be totally fine and just like that, I feel like I'm on the fastest Tilt-A-Whirl, there is two (sometimes three) of things, and I am so damn dizzy. I look like an actual drunk college girl in 5 inch heels on a cobblestone street in the dark. It has made leaving the house near impossible. If I'm going to, it's a whole routine to do before, a whole series of things to bring just in case, and having several back up plans. I haven't gone to a store alone in... well over a year. Someone has to be with me because there is a good chance I will fall or definitely need to hang onto someone. If I get dizzy, I can chug a ton of water like I've never had water before, eat a bunch of salty snacks, and wait. If that's not working, I chug a ton of water and then eat a bunch of sugary snacks, and wait. Usually one of those works. If it doesn't, I have to go home immediately and go to sleep. If I'm alone by chance? I'm locking my car doors, opening windows slightly and taking a nap and hoping for the best. I'm not even kidding. 

Now, you're asking yourself, "Sara- what the hell, don't you ask a doctor?!", to which I say oh child. Seriously. I have been to primary, endocrinology, gastroenterology, cardiology, pulmonology, rheumatology, nephrology, neurology, the ER countless times, accupuncturist, balance and movement therapy, physical therapy, opthamology, and any weirdo idea anyone has come up with? Done it. All of it. No answers. Everyone just points at each other, meanwhile I'm in the middle eating Wheat Thins and looking like I've been on meth for a week straight. 

The worst though, was in November. I had been complaining that it was truly just getting worse and nobody really understood what I was saying. Until the day I passed out in the shower without warning, for 45 minutes, only to be woken up by Lucy holding my cell phone and asking if I want to call daddy. I had no idea what the hell happened, or how, and I was so disorientated. 

I know I hit my back, shoulder, and arm on the water spout going down, and I think I hit my head on the side of the tub, and probably bottom. I woke up to the shower being off (so I know something hit the little button thing that you push down to fill the tub) and the water hitting my forehead, so how I didn't drown, I have no idea. That's what my back looked like right after and that was an AWFUL bruise for at least a month. 

I had bruises like this in weird spots, so under my arms, one on the back of my neck, one on the side of my boob (but on the other side of my body, so that was odd), a bad one on my knee, the top of my foot, and god knows my head hurt like hell for days. Pretty much everyone was in agreement that I had a concussion for sure. Nobody can agree on why this would have happened. I didn't feel lightheaded or anything before, I truly have no memory of going down. So that was fun. 

Since then though, the dizziness and vision issues have only gotten worse. I rarely drive. If I do, please know that I have had enough water to accomodate three camels for a year and my bladder is probably going to burst. I've eaten an exact amount, I have snacks and more water, I have a bag to puke in, and I have a list of people to call should I get into trouble and can't drive. I can tell well in advance if I'm going to be able to drive myself to an appointment or not, and Matt will leave work to take me. I no longer walk outside because I get dizzy and disoriented. 

Which means that I have literally become a recluse. I'm lonely and sick. I don't go places, I don't have people come over because nobody wants to hang with someone who can't shower alone, pukes all the time, and literally only has Wheat Thins to eat. My house is a wreck, I have no energy, I'm exhausted, and I'm frustrated. I think I've narrowed it down to either endocrinology or gastroenterology at this point. I'm shit out of luck with endo because the doctor I've had since day one literally just died, which explains why I can't get a call back or reply message on the portal to save my life. Gastro FINALLY agreed to see me this Friday, so I'm just crossing fingers something good happens. 

The last straw at this point for me was yesterday. Yesterday I took Jackson to a doctor appointment. Got so damn dizzy so him and I just watched weirdos walking around the Hillside area for an hour while I chugged water and ate snacks. I got him to school and I just felt... not great. I was going to lay down but thought, I better pee first, you know? I pee, and I feel like I am actually being stabbed with pins and needles all across my lower abdomen and I have just a dull, but not comfortable, pain in my lower left side. I was at the sink and I remember thinking, "holy shit, I think I'm going to pass out, this hurts so bad", and I have a pretty high threshold for pain by now. So somehow I get to floor and decided to crawl out and into the living room to lay on the couch. 

Fast forward almost an hour later, I wake up, flat on my damn back, spread out like a starfish in my dining room (which is like half-way between the bathroom and the living room), and I have no fucking idea how I ended up like that. I decide I need to get to the couch, so I was able to stand up, I walked the maybe five feet to the couch, and I curl up in a ball and sleep for another hour. Now, nevermind I had apparently taken the dog out and he's outside and my back door is WIDE FUCKING OPEN. Hi, just come murder me. Have some Wheat Thins on the way out. 

By this point it is almost 3, so I know kids are coming home soon, so I get the dog, butt scoot my way down the basement stairs to my room, get into bed and slept for almost three hours. I was able to go back to bed around 11 at night, and I feel fine today. I'm tired but that's about it, same as every day. 

EXPLAIN THAT. 

Blood pressure is all over the place. Beats per minute? I could go as low as 40 and high as 120something one time and I was literally sitting on the couch doing nothing. I feel fine either way, no different. I keep telling Matt that if this is how the rest of my life is, this is pretty damn bleak because I am in misery right now. 

Five.

I honestly wasn't sure how this year was going to go. In general, this year has kind of been a year of disappointments for me in terms of medical news. Since having Lucy, and going to hundreds of follow up appointments, five years has always been this weird finish line. Every doctor would say, "it's not great now, but by the five year mark it'll be greatly improved", "around five years is when you will see your peak improvement, it'll take that long to really repair those neuro-pathways", etc. 

Now I'm at the five year mark, and I'll be honest, I was hoping for more. I'm realistic enough to know I certainly won't ever get to the pre-AFE level I was at. I know that, and I feel through therapy I have really come to grips with that. What I haven't really addressed was this weird five year finish line and what I would do once I got here. I guess I really thought it would be this weight off my chest kind of feeling, like, I've made it! I made it, and look how great I'm doing. 

Except... it's not really happening that way. So, let's talk about where I'm at, five years from the worst day of my life: 

Good News: 

• I recognize all of my family. I recognize most of my friends (at least the ones I interact pretty regularly). 
• I am able to cook simple/easy meals at least half of the time. On a good day. 
• Some days I can walk up to a mile, sometimes two miles. 
• I am much better about using lists and reminders to take my medications, pick up the kids, etc. I have found some daily routines that help me at least be independent at home. 
• I don't cry every day/all day. I only really break down maybe once a week, usually in the shower when I'm alone. 
• Seeing pregnant women or very tiny babies used to be a PTSD trigger for me, and while they still are, I'd say 75% of the time I can keep it together for enough time to get through a store or interact with someone. 

Bad News: 

• If I see someone who I don't regularly interact with (face to face) and you say hello to me in a store? I will not know who you are. Please don't take it personal. In other scenarios, I'll know that I know you somehow, but I won't be able to remember your name or how I know you. 
• While I can sometimes cook a meal on a good day, the good days are far and few between. I might have one good day a week. 
• When I walk a mile or two, or any kind of exercise, that is usually all I can do for the rest of the day. The next day, or two, I am usually really sore and abnormally tired. It feels like I've been awake for over 24 hours kind of tired. 
• Is it weird to say I actually miss cleaning? I can wash dishes and vacuum the dining room rug, but really anything beyond that makes me so tired I need a nap. I can fold laundry, though! I used to hate folding laundry, but honestly I like it now because it makes me feel like I'm doing something. Cleaning used to be an anxiety release for me and not having that has been difficult. 
• I still get lost. I can't go on walks by myself, and I don't know if I'll be driving beyond 50, if I'm being honest. I get lost trying to come home, I keep going to the wrong house or forgetting where I need to be all together. I have places that are just muscle memory, but if I have to go somewhere new? I need a ride. 
• Oh, but I get SO CARSICK now. It makes me so dizzy to ride as a passenger and then I'm just straight nauseous the rest of the day. 
• So many of the issues I was diagnosed with are still here and have either gotten worse or things were added to the list. My amount of medications to function has increased and even still- there are several issues I deal with that nobody has any idea what to do with. 
• My memory is still really terrible and just a few months ago I saw a new neurologist who very nicely let Matt and I know that my brain injury looks healed from an MRI stand point, but he does not believe my cognitive function, flexibility, memory, etc. will improve much (if anything). He does believe I'm at my peak and encourages Matt to keep an eye on any decline. That appointment was a real blow to me because I went in really hopeful and left feeling pretty discouraged. 

So, it feels pretty balanced, I guess. I just.... I just really hoped some of the issues I left the hospital with would be in my rear view mirror by now. 

A picture of me from August 2, 2016. Matt doesn't remember if this was before or after my second surgery, which is when they were able to fully stop the hemorrhaging from my uterus. 

I knew the day before Lucy's birthday (July 31) would be hard, it always is, so my plan is to keep myself busy. I wanted to go to the Rose Garden, which is what I did that year and it's my last memory of anything. It's my only memory of Lucy's pregnancy, and from there it's just really spotty flashbacks, kind of. So this year, Lucy wanted a rainbow cake, and I spent the entire day making a six layer rainbow cake. I will probably never do that again. 

On her actual birthday we had family come over for dinner, cake, and presents, but after lunch we headed to the Rose Garden, and then off to sit on the rocks and look for some sea glass. 

We had all four kids with us and it was a really nice time to just sit. I could feel my feelings, and I let some tears fall, and I watched the water. I've read, and heard many people say, that Lake Superior has healing properties. I don't know if that's really true, but I've learned to be open to anything, so I dipped my feet into the freezing cold water. I did some breathing exercises, cried a little more, and made some wishes. 

On the way back we stopped to watch a train pass under us, waved to the tourists aboard, and came home to party. It was a pretty good day for Lucy, she seemed like she really enjoyed her birthday, and that's all that matters to me. Her and Penelope (and Jackson) are off to their grandparents' house this week and they look forward to that every summer. I'll have a relatively quiet week since Matt and Olivia are working. I specifically didn't schedule appointments this week because if I've learned anything in the last few years, it's that this is historically a really terrible week for me. I'm going to give myself permission to cry when I need to. The only thing I can compare to the general feeling of this week is being chased by something scary. Like, if you're out for a walk and absolutely SURE someone is following you and something bad is going to happen? That's how I feel all week. I'm jumpy and anxious even though I know nothing is going to get me. It's just crazy. I feel crazy. I'm not crazy, but I feel it for sure. 

So yeah. Five. My baby is five and I remember none of it. How do you grieve that? 

Neurology is full of adventures

I posted on my Instagram last week but I feel like I'll just recap it here to stay consistent. I'm nothing if not consistent, guys. 

If you've been following for awhile you would know that neurology is just one of the many specialties that I visit, but I don't go very often. This summer I went for migraine follow up because my medication just wasn't working, and that's when I discovered that the super great neurologist I've had was now gone. I've gotten information that she is at one of two places in town but to be honest with you, she bounces around to different practices every couple of years and I just can't keep up. I was reassigned to another guy who really wasn't helpful at all. 

He wasn't even that nice. 

I had specific questions about my memory, if it'll get better, what should I be concerned about, etc. and his actual response was, "Oh... that's interesting" and he left the room. That was the end of my appointment. In this appointment notes he indicated that I was just depressed. 

To say I was angry is a complete understatement. I decided right then that I was going to get a second opinion, from literally anywhere else, because that's just terrible. 

Fast forward to last week.. or the week before? I honestly can't even remember when this was now. I had Matt come with me though because I feel like doctors take me more seriously if I have him with me. I don't get brushed off and they actually ask me questions versus make assumptions just to get me out the door. 

We met with a very nice nurse practitioner who stated that most of the people she sees with my issues are elderly, so quite frankly, I'm kind of an anomaly, and she is a little out of her wheelhouse. The point of the appointment was to gather information to see if I needed to see a neurologist and which one, OR if another specialty would be better suited for my issues. 

We spent over an hour answering questions, she actually took a copy of my two pages of notes, she went through things one by one. I felt like she was taking me seriously and treating this like it was something to be looked into. After almost two hours, the game plan going forward is: 

• A new MRI. She suspects there has been some kind of change in my brain, so a new MRI is being ordered and it'll be compared to the ones I've had in 2018 and 2016. If there is no change, that's a whole other ball of issues we'll deal with if we get to it. If there is a change, then I guess we deal with that. I honestly don't know if I'm hoping there is a change or not at this point. 
• A sleep deprivation EEG. I am absolutely exhausted every day. I know a lot of you are like, "Ugh, same!" and no, no it isn't the same. It isn't even close to the same. I know what kind of tired you're thinking of and this is not that. Have you ever stayed up for 36+ hours and then had to drive a long distance and then go to work? You're so tired even your hair hurts because your entire body is screaming to shut down already? That's me on a good day. I have many days where out of nowhere, it feels like my body is literally shutting down. I have to get to a bed, or a couch, somewhere that I can lay down and I will fall asleep for hours. I can't do anything to keep myself awake, it really feels like I have no control of my body shutting down. Frankly, it is kind of scary. But because I'm in this utter exhaustion state 95% of the time, my brain just isn't working well. Almost all of my issues get worse the more tired I get, which makes sense. She wants to see what my brain waves are doing, but specifically when I'm tired. 
• Neuro-psych testing. I'm a little nervous for this one because on the one hand, maybe I've gotten better in some areas and that would be reassuring. On the other, what if I'm worse? I don't know if I want to know, to be honest. I've put off retaking this for a couple of years but it turns out that I can't put it off anymore. So I'm a little nervous. 

Once all of that is done, I'll meet with a neurologist in June who will go over everything and what it means. Some concerns are that I'm getting worse, certainly. Another option is I've not gotten worse but I also haven't improved at all, which means the chances of me getting better are diminishing to nothing. The other possibility is that I may be having seizures or on my way to developing them. Some of what I call my "brain blinks" sound like possible seizure activity to her. The other possibility is that I am a repeat stroke risk and that we need to look into that. 

It sounds like a LOT, and it is, but I also left there feeling hopeful. I mean, having seizures and maybe a future stroke sound awful, but I guess at least I'd know? I can prepare for it? I guess it would be better than being surprised and terrified. I don't like surprises, but at least this might help me feel less scared? I don't know. I say this now but I'll probably be terrified if it happens so ignore me. 

That's my scoop. In March I see rheumatology and endocrinology again, and I think I am going to bring Matt to endocrinology for sure. I don't think that guy takes me seriously at all. Now that gastroenterology has basically given up and said it is either auto immune related or my adrenal insufficiency not being well managed, I feel like I am starting all over from there. 

I'm just crossing my fingers I can get some solid answers, either way. 

Medical update, weight loss, and cat butts.

I haven't done a medical update in kind of awhile, not because I have nothing to report, but because I'm trying to figure out what's next. Let's go by department, shall we? 

Psychiatry: I see my new guy in March. I am grateful I even have a new guy considering the ridiculous lack of mental health resources anywhere, let alone quality ones. I'm a little bit nervous for this because my last psychiatrist was amazing and if I could still see him (even though he's in a state far away and a totally different health system), I would because he was the one I trusted with all of my medications. Part of my psychiatry visits is to monitor all of my medication use because I am considered "high risk medication use", so I have to be monitored. Yay. He would always tell me what would happen with a med, how I would feel, when to call, and he believed me when I would report weird side effects. Having a doctor believe what you're saying is huge and I am already missing that a lot. So send all of your Care Bear vibes my way that this is a good fit for me because my other option is less good, we'll put it that way.  

Neurology: This guy. If there has ever been a department that blatantly says, "I don't care" and can walk out and nothing is done about it, it's neurology. My really great neurologist has left, and I hear rumor that she's setting up shop somewhere else so I have to do some sleuthing on that because this guy is THE. WORST. I went for migraines, and he was mildly helpful with that but I ask about the nausea, and flat out say that Zofran doesn't work, he prescribes me Zofran. It's like, are you deaf or dumb? Which one? I ask about my memory issues, and he says, "that's too bad", and GOT UP AND LEFT THE ROOM. That's it. That was the end of my appointment. In the notes he says I'm depressed and that's my problem. And you know, I 100% acknowledge that I am depressed, absolutely no question. 

BUT. 

I am actively seeking treatment and I am 100% compliant with my treatment, so he can jack off. And I say that as nicely as possible. I've had two doctors mention this note and to them I say, perhaps I wouldn't be so depressed if any one of my health issues could be fixed, or maybe if I could remember my address and how to get home, or I could remember where my kids are during the school day or when to get them? It's pretty bad that I rely on my 15 and 12 year old to tell me where I need to be. 

But you know, that's too bad. 

Rheumatology: Honestly, I don't know why I even go anymore. Well, that's not true, I go because I have to in order to get medication refills each month, and they monitor my lab work. My lab work looks great, by the way. My inflammation is down with a slightly higher dose of Methotrexate, but if this starts to not work I will need to go to an injectable version and that does not please me. I'm afraid of needles so the idea of me doing it myself is ridiculous. I could have Matt do it but he isn't always gentle, and I know this because he helps me after any medical procedure and yeah, the level of gentleness is not something we agree on. So I'm not excited for that. I think honestly though, I'm going to just not say if I hurt any more and wait on that until I get really bad, if I ever do. I asked about my fatigue, the extreme fatigue, and she had no idea. She suggests maybe I do mindful and deep cleansing techniques. 

Weight loss: Admittedly, I've dropped the ball here. I haven't been exercising and I haven't see that doctor in almost a year. I know, it's bad. At this point I'm almost afraid to make an appointment knowing full well I'm going to get yelled at. The bright side? I'm still losing weight, but I'm certain that's because I'm sick to my stomach and nauseous all of the time but hey- no big deal, right? Sigh. 

I am currently 169 pounds depending on the day and when I started this, I think I was 212, so if those numbers are right, I've lost a little over 40 pounds. The goal was for me to get to 160, check all of my lab work, and see if I moved myself out of the pre-diabetic group, and then talk about long term maintenance. I am so close, and I need to just make the damn appointment already. That orange shirt, though? I bought that in 2015 when we were in South Dakota and it was a little snug. It is currently a little loose and I don't hate it. 

Gastroenterology: I still tear up when I think about my last two GI appointments, mostly out of anger. If you've been following along, you'll know I've had a ridiculous amount of lab work, endoscopies, colonoscopies, scrambled egg test thing, the CT scan thing, ultrasounds, MRI's, and x-rays. I feel like I have done it all aside from a barium test and I had already decided I would refuse that. HARD pass. Anyways. 

All of it says I'm normal. All of it. All of my lab work is within normal ranges and I keep saying to my doctors that what is normal for you, or the general population is not my normal. My body doesn't process anything normally, I don't absorb things normally, nothing, and that's some my old psychiatrist was firm about, he totally believed me and was absolutely fascinated by it. Anyways. 

The GI doctor in a very nice, but matter of fact way, said he has no idea and he can't help me. He said he's ruled out pretty much everything. 

Apparently, being constipated and then having the worst diarrhea of your life, both of which make leaving the house an absolute nightmare, is normal. Abdominal pain almost every day, sometimes so bad that you have to lay down and do breathing techniques like you would if you were in labor, is normal. Being so nauseous out of no where, throwing up for no reason, having no appetite and being unable to it, is all normal. 

Primary Care: I had my physical, I went over literally ever issue and of course, she has no idea either. We did learn that when Endocrinology took me off all of my vitamin D supplements, I was right, and my numbers are in the single digits. *sigh* So now I'm taking my own supplements and he can go ahead and yell at me when I see him in March, too. But I had my mammogram, the boobs are good, I was referred to pelvic floor therapy, which I see this week, and then I was referred to the University of Minnesota for GI. 

Oh, but don't get excited. I cannot go there physically, it is virtual only, but because I live in Wisconsin and they are not licensed outside of Minnesota, that's too bad. 

I also got referred to the other hospital in town here for Neurology, and they have changed my appointment 6 times in the last week, so who knows when I'll actually see them. 

Endocrinology: It all comes down to the doctor who always insists I pee in jugs for no actual reason. There is nothing wrong with my urine output but that and my vitamin D levels are basically all he cares about. Every doctor has told me to take my list of complaints to him because they are all likely from my adrenal insufficiency and hypopituitarism not being managed correctly. I have zero faith in this doctor and honestly, I don't know what to do about it. I'm just over it. 

But you know what I do have? Kitten butts. This is George, he likes to climb around my head anytime I'm on the computer. 

He's pretty great. George and his brother, Banana, are pretty great. I don't know if you know this, but having a kitten cuddle up on you and purr very loudly is great when you aren't feeling so hot. It's been a mood lifter for sure. 

CT scan from hell.

I don't know how to even sum up what my journey through gastroenterology has been, but you can see some of it on my Instagram where I have a few videos.  To say it has been a nightmare is an understatement. 

The last failure was pain management, and they sent me back to gastroenterology because my immense pain after injections that should eliminate pain was a signal that hey- something else is wrong with me. Thankfully, my gastroenterologist was a little more fired up at trying to figure this out and was actually kind of angry this wasn't cut and dry, which I'm 100% OK with because I am also angry and I am hoping two angry people can come up with a solution. 

We went over everything again. He decides we are going to do an unbelievable amount of lab work to rule out IBS and Crohn's for good. He's positive it isn't either of those but he definitively wants them ruled out. He said I was going to get an abdominal CT done, easy peasy. It's the nausea though that is a hang up for him because nausea doesn't mean a stomach issue. Nausea is a weird thing that is a symptom of everything. Just because you're feeling like you're going to barf in the middle of Target doesn't mean something is up with your digestive system. A lot of the time it can be a neurological thing, so if my labs are alright and my CT scan is alright, HE is going to order an MRI of my brain and we are going to hope that we see something different in it from my MRI from 2018. 

That's where I'm at: I am actively hoping for something glaringly obvious to be glowing on a screen saying I'M THE PROBLEM because at this point I really just need to know what the hell is going on. I mean, am I dying? Do I have cancer? Is it something I can fight/fix? Is it something I take medication for? Special diet? Am I going to do die in six months, because if so I'd like to know so I can plan it out. I mean, these are all the things going through my head as I wait for my labs. 

Spoiler: my labs were mostly fine. Just a couple of things were slightly low but nothing that signals something really going wrong. So my next hope was the CT scan. 

**** STOP HERE IF YOU GET GROSSED OUT BY STUFF. SERIOUSLY, TMI ALERT.****

I did that on Friday and everyone told me it is like a 5 minute thing, which.... technically, the scan itself WAS a 5 minute thing. The scheduler said I had to be there 90 minutes before to "get set up" which, alright. I figured I would bring a book or something. 

Imagine my shock when the lady comes out with this beverage and a straw and says she'll be back in 20 minutes. Alright, weird but I can do this. The drink itself isn't the worst. It really was like flat Sprite that never had fizz and not sugary at all but more... salty? It really reminded me of the glucose drink when you're pregnant. Here I thought I was done with that horror but nope. 

I got it done in 20 minutes and thought THANK GOD I'M DONE just as the lady is coming out with another one. 

Then she informs me I actually have to drink three of them and I get 20 minutes per bottle. 

You guys. I am not someone who can eat or drink things I don't like, I really struggle. I actually managed to get all three down and the others in the waiting room were whispering "chug it" as motivation but I barely got it down. That last sip I thought for sure was going to be thrown up. 

A more pressing issue was my bowels. They said I could pee (which thank god) and I ran for my life and I had never peed that much in my life. Never. Not only did I pee but I realized that, oh yay, I now am going to have a bout of uncontrollable diarrhea. Isn't this grand? This is exactly why I don't eat/drink much at all outside of my house. Or if I know I won't be going home right after, my intestines cannot be trusted. 

Once I feel like I'll be good for a little while, I go back in just as they are calling me. I go in for my scan, they run an IV so they can do contrast which, alright. I don't know what it is about the techs that do scans but they cannot do IV's on me and this guy tried hard but my arm looks like I'm an intravenous drug user right now. Also, some kind of liquid got sprayed all over my sweatshirt and it's in the wash and I hope it came out otherwise I'm going to be angry, it's new and my new favorite. Anyways. We do the scan and I can feel my bowels waging war and I'm getting legitimately nervous. He tells me the contrast will make me feel like I've peed my pants but nobody ever has and in my head I'm wondering how many people have crapped their pants in here because I really don't want to be the first. 

By the time the scan is done (I did not crap my pants), I literally RAN for the bathroom and spent the next 45 MINUTES typing a strongly worded email over the patient portal to my gastroenterologist that he needs to freaking warn someone that these drinks are basically giant laxatives and MAYBE you should have told me to buy an adult diaper or bring a towel, or SOMETHING. 

After I felt somewhat alright, I go out to my car where again, I wonder if I should go back into the bathroom or try driving and I just want to go home so I decided I would speed home. 

That turns out to be a terrible plan because guess what? Construction. There is a construction project beginning and four lanes of traffic merging into one at the end of the work day on the freeway. 

I actually thought about what my plan would be if I really couldn't hold it, do I get out and just... hope I don't end up on the news? I mean, WHAT WOULD YOU DO? 

After almost 30 minutes barely moving, I get to the Wisconsin exit and literally haul ass. I think I blew a stop sign, for sure a red light, I drove like I stole the car. I got home and I barely made it to the bathroom. And I really mean BARELY. Fast forward twenty minutes of losing my bowels and I go down to get into my pajamas, throw clothes into the wash, and again.... diarrhea. This continues for hours. Oh, but then about two hours into being home I start (wait for it) vomiting! 

Take a guess how great vomiting up flat Sprite is- I'll wait. 

Spoiler: it is awful. It is as awful as you can imagine anything but combine it with diarrhea at the same time. 

This is when I write my second strongly worded email over patient portal because by this point I am angry. I can't remember being this angry in awhile. 

I give up around 8 p.m. and decide the diarrhea is down to like once an hour so I'm going to try to go to bed because now I'm just exhausted. Also, keep in mind that I have Sheehan's Syndrome and secondary adrenal insufficiency so if I start throwing up or have diarrhea I need to take more of my medication because I could easily go into an adrenal crisis and that's bad. So I take more meds and go to bed, hoping I don't crap in the bed. 

I made it through the night but all day Saturday I felt absolutely awful. I was nauseous and I hadn't had stomach pain that bad since the day I had my gall bladder removed. The best part is I got the best call from my doctor's assistant who kind of chuckled at my emails (she is familiar with me, we can laugh together) but then tells me it is usually the IV or the drink, and if it is the drink you only need one. 

ONE, you guys. 

One. 

I had three. 

THREE. 

On the bright side, all of my insides were really expanded or whatever so there is no reason they can't see stuff, right? 

As of right now I have no other information from the scan, but cross your fingers something glaring is on there, OK? I know that sounds odd, but I really need to know what it is because living with pain and nausea all day every day is a bit much at this point. 

October (almost) wrap-up

It is really crazy to think October is already half way done. I have done so many things in the last month it was kind of overwhelming to go through it all. I didn't even include all of it here, I'll save that for another day!

Way back in June 2018, I did a boudoir shoot and it was definitely a learning experiences for me. I had a lot of feelings immediately after but also the more time that went by, the more I seemed to have. In 2019 I took part in a little mini group for the session about body positivity and started digging into some of the reasons why I feel the way I do about my body and self. Certainly, lots of it requires more work than something this group could cover and I get that. I've since spent some more time really thinking about it. 

One thing though that I really have a hard time getting past is my abdomen. Never mind that it is totally not functioning the way that it should be and that's frustrating. Everyday though, when I wake up and I get dressed, I see my floppy tummy and I see my c-section scar. It isn't the fact I have a scar that bothers me, instead, it is a visual representation of trauma. I have something on my body that everyday reminds me of the trauma I have been through and it's panic inducing for sure, but it is also really scary. It reminds me that I have no control. 

And control is a big thing for me, I really don't do well if I don't have it in my personal life. 

So when I saw an opportunity to participate in a RAW session for the same studio, I figured what the hell? Why not? You had to apply and worst case scenario, I won't get picked. 

Turns out I was picked. I had a short session with Emily and honestly? I got so much more from that one and I felt beautiful. Sure, all of my lumps and bumps are visible. I've got no makeup, my hair isn't done, I'm wearing a stretched out bra, a tank I wear to bed normally, but also my most comfortable underwear, and I felt more like me. I know my boudoir photos are beautiful... but that isn't me. I don't even own lingerie... or matching bra/panties even. I don't wear much makeup and I never wear heels. But these? These photos were me and I loved it. I'll share more another day, maybe when my photos are live on their end... maybe. I'll share this one though, easily my favorite. 

Let's see.. we went to see alpacas! If you are friends with me on Facebook these aren't new, but I love them anyways. 

I am so glad we finally made the trek to Frosty Ridge Alpacas in Duluth, Minnesota! Easily the nicest husband/wife duo, a very cool little farm, and a pretty nice gift shop area too (I bought a magnet and a little alpaca for my desk). 

I learned a lot about these super furry (and soft) creatures and the baby loved me. As did the white one behind it. Penelope and Lucy LOVED them and would have stood there petting and feeding them all day. We didn't stay long because it was close to the end of their day, so we did leave after about 45 minutes or so. Olivia didn't come because she went with a friend to go apple picking, so we were a group of five that day. After leaving the alpacas, we decided to go to Enger Tower in Duluth because Penelope asks to go see the "castle on the mountain" so we went. 

It was ridiculously busy and I hate traffic, I hate looking for parking, I hate people who just skateboard through parking lots like morons, and I hate when people panic when parking or getting out of their spot so they freak out and stop.... half way out of a spot so now nobody can do anything. If you panic when parking, parallel parking maybe isn't for you. I'm just saying. 

Penelope and Lucy both made it up all five stories of steps and Penelope would have gone more if there was anywhere else to go. I barely made it and I stood up there for maybe a solid minute before I wanted to come down because there were SO MANY people up there and germs. Hard pass. I hustled down a lot faster than I went up. 

I wasn't feeling well that day, physically or mentally, so Jackson kind of hung back with me because he's a good kid like that. 

We decorated the house for Halloween! It is a terrible picture but the upper windows have eyes and the porch have (handmade) teeth. The little girls love it! I also have a spider and a spider web to put up but it has been so windy and I'm afraid it would blow away. I'm also not 100% sure where it is going to go or how I will get it there so... eventually. 

What else? Oh! I participated in a two day virtual conference, the Champions for Change Summit for MoMMA's Voices. I went as a representative for the AFE Foundation and it was great because I got to "meet" other AFE survivors and hear more about their stories and just different things they've done, or would like to do, since their AFE. 

I had a lot of anxiety going into it and I don't really know why? It isn't like I had to talk or anything but maybe it was just the not knowing what to expect? 

I will say that I learned SO MUCH about other post-partum issues and I learned that there is such a thing as bereavement doulas- did you know that was a thing? 

I really had a good time and I'll say by the end of the second day my little brain was feeling fried, I think I went to bed not long after! I hope I can participate in things like that again and I hope I can do more as a maternal mortality and morbidity advocate. 

There's our little AFE group! 

I'll leave you with some statistics and information that has really stuck with me: 

• Each year, 700 women die from pregnancy related causes and 2/3 of those are completely preventable. 
• The CDC has a new Hear Her Campaign (I highly suggest you watch that video) and not going to lie, it really triggered me because I could be in any of those videos. 
• In the Merck for Mothers session we learned that the United States is 1 of only 8 countries where maternal deaths are INCREASING. The United States is also 55th in gender equality. 

So just think about that. We all know someone who is pregnant, trying to be pregnant, or just had a baby, and how many of those women know any of this? We say having a baby is pretty safe but is pretty safe good enough? I feel like the United States could, and should, be doing better than we currently are. I hope someday we do. 

What have you been doing the last few weeks? 

Four years of flowers.

I realized I've had this post in drafter since a few days after Lucy's birthday and I'm not sure why I didn't post it. I'm going to post it now because I use my blog as a journal of sorts and I find myself going back to read things from previous years to maybe understand where I was at.  

**

It is really strange to think Lucy is four. Every year I struggle with her birthday and I really hate it. I hate that her birthday, which is a time that I should celebrate and be grateful I have this amazing little kid, is also synonymous with the worst thing that has ever happened to me. It's the source of my trauma and the starting point of all of the things I struggle daily with. 

I hate that it is the same event. 

Most every year I think her birthday is going to be the worst, maybe the hardest day. And every year I forget that it is always the day before that is a struggle for me. I think maybe because I don't remember anything from the day she was born, which is certainly a blessing and a curse all on its own. The day before her birth is the last memories I have of my old life. When everything was easier, it made a little more sense, I had a little more control. 

On that day, I was in tremendous pain, I didn't feel well. I was sick to my stomach, everything on my body hurt, I was swelling up in weird places, I felt faint and dizzy the entire day. I had Olivia and Penelope at exactly 39 weeks so the goal was to walk this baby out because the next day, I would be exactly 39 weeks. 

It was mid morning so we went to Canal Park, that's where I successfully walked a baby out before. The kids pretended to be tourists, we threw some rocks in. We went to eat lunch at Grandma's Restaurant, just like before I had Olivia. 

After lunch, all of us went to the Rose Garden/Leif Erikson Park. We hadn't ever taken the kids there and we thought it was weird. It was starting to get hot. There were artists on the walkway and a woman with interesting art that she was giving away on magnets. I don't remember looking at her art, but I remember her giving me a magnet and telling me it would all work out. Thinking that was strange, I put the magnet in my purse. It's actually still on my fridge because I feel like I can't throw it out. 

Penelope was obsessed with flowers that summer so we spent so much time sniffing flowers, right up until her nap time. The last thing I remember of my old life is getting into the cry with everyone crabby and Penelope crying. 

That's it. 

Every year I think about that day. The last few years I've gone to Leif Erikson Park by myself. It's usually been after a doctor appointment or something, so I've always been basically right there. Every year I've sat on a park bench, looking at the lake, and cried. 

Alone. 

And I've been OK with that. I'm not sad because I'm alone. I'm sad because I struggle with being happy and being sad and being angry. I have a hard time being all of those things. I feel like if I'm angry, I can't be happy. If I'm happy, people think I've moved on and I haven't. I won't move on from this. 

This year though, I asked Matt if we could do our nightly walk there instead. 

Because he's such a great guy and he gets it because he has memories of his own from those days that he doesn't share with me, he said yes. 

So that's what we did. 

We did our whole walk, mostly in silence. I looked at the lake. I tried hard to not cry. I don't know if you know this, but if you sit on a bench, staring at the lake, and you are silently crying, people think you are mentally ill and unsafe. You get the quick glances, people point, some laugh, but nobody asks if you're OK. 

This year I had Matt though. He doesn't do any of those things. I didn't cry on the bench, though. I think maybe I was all cried out from earlier in the day, though. He will hold my hand and pull my hair back when it gets sticky on my face from the humidity. He doesn't say anything. Maybe he's thinking his own things. Life hasn't been the same for him either. He doesn't have the same wife, the same partner. We both make do with what we have. 

A theme I've really struggled with this year is being grateful and being angry and sad at the same time. I've worked a lot on it in therapy. I've thought a lot about it. I still do. 

So imagine my surprise when, on our way out of the park, I literally stumbled on this: 

I didn't even notice until Matt said the established year is the same year we got married. Maybe I'm just an actual klutz and the world is a coincidence. Maybe its something more. I don't know. 

On Lucy's actual birthday my friend Amy sent me flowers. Of course I cried. 

Then my friend Tammy sent me flowers. Of course I cried again. I am lucky, and grateful, to have friends who know those days are really awful for me. I know I don't even have to tell them those are hard days and I am at my emotional lowest point but I'm trying to be upbeat and happy because Lucy is so excited. I am lucky. I am lucky to have amazing friends, terrific kids, and a great husband. I know of other survivors who don't have that kind of support system and I don't know how they do it. I know I struggle so hard with it, I don't know what life would be like without them.  

💕

The reflection of four.

Lucy turns four on Saturday and what I am not going to do is talk about my AFE on her birthday and what that has been like for me. So on Saturday come back here and I'll have a special post about Lucy and how great she is, plus we can all admire how beautifully adorable she is. 

Because that's just a fact. 

Today though, I'm going to talk about what this means for me. (If you're new around here or have no idea what I'm talking about when I say AFE, you can go HERE to catch up.) On Facebook earlier this week I shared this and it made me pause. 

I have spent a good chunk of the last four years trying to get people to understand that right now the concept of be grateful has nothing to do with trying to heal from trauma. Being grateful doesn't make my trauma go away. It doesn't make the depression go away, the PTSD, the panic attacks, the anxiety, the fear, the feeling of not wanting to be here, none of that goes away whether I am grateful or not. 

Even after four years I am still sad. I still feel terror when I see a pregnant woman. A small baby sometimes makes me cry. I still feel angry. 

I am angry it happened at all. 

I am angry my life isn't the way I worked for. It isn't what I wanted at all. I don't even feel like this is my life anymore. 

I am angry that I missed out on Lucy's every first because I don't remember any of it. What kind of God lets a person survive this and then robs you of memories? To make me feel like a constant disappointment to my children when I can't remember important things or share in their memories? To make me always wonder if I'm as good of a wife as I was? 

I cry all of the time. I cry because I'm sad. I cry because some days I don't know what I'm doing. I cry because some days I don't want to be here anymore. I cry because I feel guilty. I cry because I feel like a prisoner in someone else's life. I cry because I'm crying and because I'm angry. 

I cry because I'm not grateful. 

I am angry and I cry because I'm not better. I'm angry there is no such thing as "better". I am so sad that I never feel well. I always hurt. I am always so tired I can barely function. I am angry my memory is awful. I'm really angry that I am so short tempered and angry and that my family sees it. I'm feel so deflated because I keep trying and trying and still, I'm running in place. Its like I'm running uphill but I never reach the top. I hate complaining about my life because I KNOW people are out there who have it worse, but my therapist absolutely hates when I say that because its downplaying my reality. I will say that I would take all of the pain and ailments if it meant Lucy could stay healthy. Anytime she gets sick or worse I feel guilty. Its an endless wheel of thoughts of what I messed up when I was pregnant, how did I fail her? 

I am angry people still push their stupid essential oils on me like that's going to fix me. I'm angry people tell me if I just did a specific thing I would be cured. I'm angry people suggest memory games for me and assume I haven't tried them. Or maybe they think I just didn't try hard enough. Yeah, its probably that. Maybe I should just try harder and suddenly my brain and body will snap together and be normal. 

I am angry people talk about me like I'm not trying hard enough. I am angry these people can't see me on the bathroom floor in the middle of the night crying. That they can't see me in my therapy sessions trying so hard. I am angry they can't be in my body just to feel what its like to feel like you have the worst flu of your life every day. I'm angry that they can't see me in the shower sobbing almost every day because I am so emotionally exhausted from just going through a day. 

The only thing I know for certain, the only thing I know for sure with every bone in my body, is that Matt is my person. I know I'm lucky that he has stuck around, that he still loves me. I'm not always a pleasant person and I know that. It has to be hard for him to know I need so much help and some days, some days I just can't do it at all. I also know my kids are pretty damn great. I couldn't have a better set of kids even if I handpicked them. I constantly feel like I'm failing them but how do you explain to them that my best is really crappy and I'm sorry? 

I'm really struggling this week, as I always do this time of year, and I'm trying so hard to fake it. 

I wish I had the same connection with my family as I do with Lucy. It's not that she is my favorite or anything like that, she is the only person who knows what it was like. Some days I am grateful babies can't remember their birth and then other days I wish she did so I wouldn't feel crazy alone. Isn't that messed up? It feels messed up. I know there are other survivors and I've friended many and I listen to every one of their stories, some are similar to mine in ways but we are all different. Some days it helps but other days it makes me feel more alone. I'm surrounded by so many and I have never felt more alone. 

But I'm here. I'm acknowledging that I am here, I have worked so hard to stay here, and being here is an accomplishment. I might still be running uphill in a storm but nobody can say I'm not hanging onto every rock and branch so I don't fall. Because I might be a lot of things, but I don't want to be a failure too. I also know that nobody has the right to make me feel worse, to make me feel more guilty. So I guess I'm learning things, too. 

So here we are, four. I don't know if things will get better. I'm no longer in that "give it time, it'll get better" optimistic phase, I've moved firmly into the "its shit and that's OK" phase. I'm not even sorry about it. I'll just keep swimming, surely I'll wash up somewhere. 

My body is a lemon. What is the lemon law on bodies?

I had an eventful week of doctor appointments, that's for sure. Let's just go appointment by appointment then, how does that sound? 

Psychiatry: I think this may have been my last one with him since he is moving across the country and I am so damn sad about it. Truly, I can't even explain how sad I am without sounding like I'm nuts. This doctor is one of the only ones I trust implicitly. I trust my psychologist too, but she isn't dealing with my prescriptions and stuff, that's talk therapy. My psychiatrist is so damn great and I have trusted him for the last three and a half years to advise me on a lot of things. He always believed me when I said I wanted to die and I wasn't happy. He believes me when I say I really can't do it anymore and I just don't want to traumatize these kids. At the appointment, and I'm glad it was a virtual visit because I hope he couldn't tell I was straight sobbing, he said my greatest obstacle is, and will always be that I'm perceptive, honest, and realistic in understanding my limitations now. That I don't wear rose colored glasses, but I don't curl into a ball helpless. He kept saying I was worthy, I am one of the strongest patients he's had who puts in the work to get better. He said more but honestly by then I was just a damn wreck. If I was in person I probably would have hugged him for dear life and gotten boogers all over him and I'm not even kidding. 

I ended up asking him if he could give me a list of the drugs I've tried that didn't work because I can't find my notebook and at the end of his final note it says, "Med history: Extreme and difficult reactions to Cymbalta, Zoloft, and Lexapro. Failed Strattera, Topamax, Depakote, Nuvigil, Rexulti, Abilify, Vraylar, Modafinil, Ritalin, Adderall IR.". 

So damn. I mean, most of these I had forgotten but this is quite the journey. 

Psychology: I ended up having therapy two days later which was great because I also cried there, too. She doesn't think I'm nuts that I'm so sad and she also totally understands why every day is hard. I was telling someone the other day that being told the happy centers in your brain don't work is one thing, but really understanding what that means is a totally other thing. I thought I understood it years ago but I think I was still in the grieving stages because I was just really angry about it. Angry that people don't GET IT, and no amount of endorphins, exercise, sunshine, oils, sex, whatever is going to fix it. When your brain is busted, it is busted. Now I feel like I'm really accepting it and some days it just makes me sad again. I see photos of me years ago and I look happy. Unapologetically happy and carefree, enjoying life, and now I just feel... here. I guess. I mean, I'm here and that's something I guess. 

It was basically an hour of crying and I can't wait until I can go because I feel like I can't really let it out, you know? 

Gastroenterology: Well I saw him in the morning today and wow, that sucked. So I am still having a ton of issues since having my gall bladder out. Apparently, and none of you are going to be surprised, but I'm in the really small percentage of people who has a body that doesn't adapt well to not having a gall bladder. 

I know I'm not shocked. I'm only shocked we held out hope I'd be normal. 

With all of my issues: the nausea, almost vomiting, diarrhea, bloating, feeling full after a bite or two, etc., I get to do a gastric exit scan. He said I'd be eating a LOT of scrambled eggs with radioactive dye to see how fast I poop it out and basically its journey from eggs to poop. 

Which, isn't that grand? 

I have no idea when this adventure takes place but someone in scheduling is supposed to call me. They are basically trying to see if I have gastroparesis, which sounds awful. It would explain a lot of the issues I've had, so I guess that's something. The doctor said he absolutely wouldn't be shocked if I had it given all of the issues I've had, but also because I have a damaged pituitary gland which means I have no working hormones. Apparently, you need hormones for even your stomach to work and it sounds like it isn't. 

So just a reminder kids, your pituitary gland is important!

Weight Loss: I saw my weight loss doctor in the afternoon, and good news, I am down 31.8 pounds from end of December. I'm officially 174.2 pounds and I have 14 pounds to go for my goal weight of 160. I am pretty happy about it and I am feeling better overall. I definitely breathe easier, my back doesn't hurt at much and just the ability to walk around the entire house without getting winded and exhausted is really nice. Bad news is that he agrees, it sound like I have some kind of gastroparesis and he's concerned about how quickly I seem to be losing weight, like I'm down 9 pounds in a month. So we'll see where I am at when I go back. 

I just feel so damn defeated. On one hand, I'm grateful doctors still give a damn and are trying to figure out what is going on with me. On the other hand, I am so fed up. It is frustrating to think all of the things I deal with were kicked off with my AFE blows my mind. It's frustrating too when doctors blow that off and tell you an AFE is a one time event, it doesn't cause issues later on. Which, I guess it doesn't create havoc forever but it can certainly be a catalyst for things and doctors just don't want to go there. 

Oh well. 

So that's my medical update. If you have information about gastroparesis (or horror stories), let me know. I don't mind knowing the good, the bad, and the ugly, because it at least helps me make a list of questions when I go in. 

Have a good weekend, lambs.