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? 

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. 

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. 

Purple fingers, season change, and pills

It's been awhile since I've talked about what's happening health wise. Not that I think anyone really cares, but it's been nice for me to constantly have this to check back on when I forget. Between my blog and Facebook memories, that's really the only memories I have. Is it weird to say I'm grateful for social media for that? Anyways.

So it's fall, and as I look back on this time of year the last three years I see that this depressing slump I'm in is pretty par for the course. I had therapy last week and I went in as a wreck. An hour no longer seems like a long enough session and she said maybe down the road I might consider going weekly because I seem like I could benefit from it.

That's probably true, but I'm getting tired of always waving the flag. Every threshold I've had in the "I'm not that bad" column I seem to be crossing off and it's frustrating and defeating.

It's fall now and I can feel depression coming in like the cold weather. Any motivation I had to try to do things is pretty much gone. My interest in pretty much everything is gone. My appetite is gone. I'm so tired all of the time that all I want to do is sleep. Even with my medications it's just.... gray. Everything feels gray.

Have you ever been to the blog Hyperbole and a Half? Anyone who was anyone in the world of blogging 5-10 years ago had visited this blog regularly and she just did it so well and ended up writing a book and it is great. Anyways- she did a blog about depression that was so SPOT ON and honestly, if you  have never seen it, please-please-please go, read it, and come back.

Go HERE.

OK, so that's kind of what it is. It feels much worse some days. It dawned on me the other day that the idea of dying or being dead no longer scares me. I think for a little while after my AFE the idea of killing myself or being dead was scary because I had never had the feeling of wanting to be dead. I think when you first register yourself as someone struggling with suicidal ideation (which is different than being suicidal, don't freak the hell out, people) it's kind of alarming. More alarming though is being in it right now and know that you had a couple of weeks/months where you didn't think about it and you never realized how good you were having it right then because you depression is still bogging you down. Then you realize that's it is really depressing that that moment in time becomes the goal, knowing that you are fully depressed and feeling awful but at least you didn't think about wanting to die everyday.

That's a really depressing goal.

It also makes me wonder why am I even hanging on if that's my goal, that's what I'm working towards. Because that couple of weeks/months wasn't great at all, it was just a period of nothing. I felt nothing, but I wasn't raging. Realizing that my brain functioning makes no sense to me but is also really difficult to manage is just.... it's defeating.

Aside from that though, the medical situation is just as bad.

Auto Immune stuff: My inflammation lab work is still very, very high despite taking my methotrexate every Wednesday. I was on 8 pills on Wednesdays and then she had me do half in the morning, half in the evening to see if my body absorbed it better. It didn't seem to make a difference and the lab work showed that. Now I'm up to 10 pills on Wednesday, split doses again, and still- I feel no different. I've become one of those people who are like a weather barometer- I can feel the weather. Last week was pretty rough and I normally feel like I'm getting the flu but last week I felt like I was on day 3 of the worst flu of my life. That was every day and there isn't a thing I can do to deal with it. Plus, my fingers are almost constantly purple so hello, fall.

Gut check. I continue to have really horrible abdominal pain. I've done so many tests, scans, and lab work and nobody has any idea why my entire abdomen area hurts. It's not heartburn, it's not my gall stone, it's not my liver or appendix, it's not cancer, it's not any weird disease or syndrome, it's not a diet issue, they legitimately have no idea. Which is just great. They said I could "come back if I wanted to" later this year and it's like YES- BECAUSE MY ENTIRE MIDSECTION HURTS EVERY DAY TO THE POINT OF HAVING TO LAY DOWN AND DOING BREATHING EXERCISES AS IF I WAS IN LABOR TO GET THROUGH THEM. So yes, I want to come back. Fucking fix this. Jesus. I mean, I get not knowing, but ask another doctor, send me somewhere else, literally do anything at this point.

Busted. In not sexy news, my entire reproductive system and parts seem to be busted. Intercourse hurts and it's all for nothing because I can't feel anything and orgasms aren't happening. I know that this is probably really normal for my situation but the last three years has been... crappy. I see my primary care doctor in November for my physical so that's on the agenda but yeah. It's busted. Also, the hot flashes are getting SO MUCH WORSE. I only get a period once a year (which is just fine) and this year I got it maybe a month ago and it was so painful and I felt like someone was actually stabbing me for an entire day. It only lasted for one full day, and so I'm grateful for that because it was painful.

Neurology. I won't get into it much here but just know, my memory is not improving. For awhile there I thought maybe it was but that was like a false oasis because it's gotten worse. At first you think it's just little things like your car keys or phone go missing, you forget to put the milk away or shut a cupboard- all stuff that regular people do everyday. I know people blow that stuff off when I talk about it but for me, that's irregular. That is not my normal, those are not things I normally would do. Then it kind of morphs into other stuff. I'll forget to take my medications, I'll sort them all wrong or forget to have Matt check them, I'll forget to wear my CPAP mask at night, forget to shower or how to wash my hair, I couldn't remember how to tie my shoes last week. I dropped Penelope off at school and couldn't remember how to turn my car on and then how to get home. The forgetting where I live thing is starting to happen more and more. I had a bigger incident that I know Matt kind of brushed off and said, "well you remembered- and that's what matters" and I'm like, NO- the fact I forgot IS A BIG DEAL.

Sometimes it feels like a split personality. Where fog Sara is kind of in control and at the wheel but then old Sara pops in to say, "danger! danger!" and nobody listens. Like some little part of my brain knows I'm in murky waters but can't get me out.

I'm really afraid that I'm going to just progressively decline. I'm doing all of the puzzles and exercises, I do them all of the time, and still- it's not working. The closer I get to the 5 year mark (which is when I should be at my "peak recovery"), I'm getting scared, like I'm going to just miss the target.

Ha ha. I saw in Facebook memories that a few months after my AFE I was like, "god, I hate taking all of these meds" and I was only on 4 things. FOUR. That's nothing.

I've got all of my steroid replacements, my beta blocker, my acid reducer, my mental health medication, and my vitamins. And this is only my normal day, when I get to Wednesday I have to add 10 more in. 

That's my typical morning. I'm so used to it now that I don't even think about it but at every doctor appointment I ask if I can stop any of these. I know the answer will be no because my body doesn't produce any of this stuff or function without them, but I ask anyways.

I'm just in a really awful spot. Yes, I have my kids. Yes, I have things to look forward to. Yes, I have a great husband. Yes, I have family and responsibility. I know all of this, and I get all of this. But I also know that I'm tired. It's like asking an amputee to just drag themselves a little further through a desert when they are straight exhausted. I feel like I can't keep dragging myself around.

But I do it. I'm medicated and even-keel so I can keep going.

Lucy turned 3 and we all got through it.

I have SO many posts for you coming up and you're going to just be so overwhelmed which is only right because I am super overwhelmed with life right now so here we are. We are fresh from our trip to Missouri (more on that another day) and right before we left we celebrated Lucy turning three. My rationale was that if I did her party and then we immediately left I wouldn't have time to dwell and be in my feelings. 

And that worked for a few days and then it's all kind of waited for me so I'm still not sure if that was the best tactic after all, but I guess we'll see. I'll give it time. 

Anyways. 

On her actual birthday we just did a small party among our little family of six. 

We played in the yard for most of the day, and she had a really good time.  

 Birthday tradition says the birthday person picks our dinner and no surprise, she picked spaghetti. So that's what we had and she couldn't have been happier. 

 We only do cupcakes on that night because it's cheaper than a cake and we usually have a cake during our all family party. 

 But she didn't mind. 

 She gets a present. I usually only give them one gift on their actual birthday and maybe two or three on their party day. 

On party day we were really lucky because my brother and his wife and two kids were able to come up (they live five + hours away). 

 I found these spray bottles at Michaels with liquid chalk on clearance and the kids decorated my patio area. 

 Thankfully it was washable because they got it on themselves. 

 We had a BBQ lunch and the kids ate their weight in blueberries. 

 Anytime you ask Lucy to smile, this is still the face you get. I'm kind of hoping she grows out of this soon. 

 She really loved her cake. She's a huge fan of Toy Story and though we haven't gotten to see the newest movie, the bonus is that all of the stores have toys and stuff for it, so she got a Toy Story cake. 

 We opened presents. Her cousin Adriana helped her out. 

 My mother in law got her a Baby Shark that plays the song and Lucy absolutely LOVES IT. 

 Penelope is especially enamored with her cousin Mason. He's super cute and she's always hugging him. 

 Lucy's "big" gift were a few more Calico Critters so her and Adriana played with those for a long time. 

Before they left I got a quick picture with my niece because she's just the cutest thing ever and I love her so much. Every time she comes up here I always try to have crafty things to do with the kids and this time it was calm down jars and slime. Both were a hit and I'm still finding glitter everywhere. I hope she has good memories of her Auntie Sara when she gets older. 

Overall? The party was fun. It was an OK couple of days and I didn't have a lot of time to dwell and be sad and angry. I'm feeling all of that now but I have therapy on the 19th so I can make it another week. This means I'll have had a three week stretch with no therapy and it's been ROUGH. I'm trudging through though. 

Tomorrow I'll talk about our Missouri trip and share some photos. Hang tight.