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. 

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. 

Life just keeps happening in October.

I keep saying it feels like October just started but honestly, we're in the last week and I'm so overwhelmed with life. To think by the end of the week we only have two months left of 2021 is just crazy to me. So much has happened this year and I'm trying to close out 2021 on a happy note, so we're made some changes to how our family functions and how we are going to do things going forward. More on that later. 

I started the month out by getting my hair cut and colored. I was sick of hating my hair and I had money from my birthday in March so I figured, fuck it, I'm getting my hair done. Somehow though, it doesn't seem as dark as when I first got it but that's alright. I'm just happy it's not a weird golden orange anymore. 

Olivia is learning to drive and she can test for her license right before Christmas. Matt has been taking her because my anxiety has been so bad lately but also my own vision hasn't been great so I wouldn't be a good teacher for her. We let her drive out to her grandparents' with Matt so I followed behind with the other kids, it's such a weird experience to follow your kid in a car they are in control of. 

We've spent a few Friday nights freezing our asses off in the stands to watch Olivia play in the band. They did really great and I'm glad she is enjoying it. I think Jackson is looking forward to being out there next year. 

Penelope and Lucy have been super involved with recent book reviews but I even got a quick picture of Jackson and Penelope sitting nicely together without bickering. 

I'm trying to not share much about the kids in general on here anymore but I can't resist showing you Olivia before her first Fall Ball. They didn't get to do any high school dances last year so this was just extra fun. She went with a group of friends and they all seemed to have a fun time. She's such a beautiful young woman. 

I can't even remember if I mentioned it or not but Matt and the kids built me a Little Free Library for Mother's Day this year. Over the summer he put that up for me and we've kept our library stocked with mostly all new releases (if you live near to me sometimes I put some review books in there!) and every once in awhile I get a real doozy that makes me laugh. Last week this one showed up and I had to take a picture of it. 

Both Lucy and Penelope went to their first dental cleaning a week or two ago and apparently between the both of them there are seven wiggly teeth on their way out. Penelope wasted no time just yanking one right out like the first two she lost. She got her $1 from the Tooth Fairy and she's eagerly working on losing more teeth because she really likes money. Don't we all, girl. 

Oh yes, I got my first Christmas gift wrapped with help from Jackson and George. George was more about ribbon control and supervision, though. I've already started ordering things and getting myself organized. I am SO on the ball this year though, I've been saving cash for the better part of five months (next year I'm doing Christmas saving challenges so it'll be even better) and I'm chasing deals to keep costs down low. So far I've only spent $350ish and I am mostly done with the kids, so I can't be mad at that. The rest I have money for, I'm just waiting for the best price before I commit. What am I getting Matt? I have no idea. Literally not one idea. Well, I had one idea, which is what I wrapped but other than that..... I've got nothing. 

So that's how most of October has gone. My office Christmas tree is going to go up on Monday. I might hold out a little longer for our big tree, I'm not that ready yet. 

Depression, still a thing around here.

I haven't been super vocal about my medical stuff going on, mostly because it's the same thing over and over: people just don't have a clue so they optimistically send me off and tell me things will "probably be fine".  

I don't know if you know this or not, but that's literally the most unhelpful thing to tell someone with a chronic illness. I mean, if you don't know what's wrong, that's fine, but maybe send me to someone who would know instead. 

I still don't feel well physically and at this point, I've just decided this is the best I'm going to get. Every day I feel like I have the worst flu, with body aches all over, I'm so tired I'm barely functional, and if I'm not sick to my stomach and/or vomiting, it's a good day. I'm just tired of advocating for myself because as far as I'm concerned, that's just some bullshit people say to be motivational or encouraging. 

I'm already struggling but now that it's fall I have moved firmly into the worst season of the year for me with mental health. I know it's going to happen every year but this last weekend I hit my wall and I've steadily slid down it into a dark hole. I'm just over it. I'm trying to keep myself afloat and I have one child dealing with their own mental health issues and I'm having to drag them along with me. It would be helpful if they made some efforts to help me move them but no, it's straight resistance and I'm struggling with forcing them to get help or saying fuck it, because until they want it, it won't work? Does that make sense? I also love being told they wish I was a better mom. I mean, I already know I'm not the same mom I once was and it's taken me five years to not feel tremendous guilt and just angry about it, I was finally feeling like I could let that go. 

To have one of my kids point blank say they wish I was a better mom not only felt like a stab to the heart, but it was like confirmation for my brain to start the "you're a shit mom, you're better off dead, they're better off without you" track that plays on repeat. I know they are just a kid so they don't understand fully that what they say has a direct impact on someone else, it doesn't make it hurt any less. So since then, I've really had some dark moments where I've been worried to be home alone. I'm doing the best I can, I can't give anyone what I don't have. I feel like I'm being sucked dry by other people and nobody gives a flying fuck that I'm struggling. 

I continue with my therapy and my psychiatry because I know it's the best thing for me. It's the only place I can say what I really think and how I really feel. Because I am so angry. I'm starting to feel resentful and I feel like I don't ever get the chance to get better because it's always me having to come to the rescue of someone else. I spend 90% of my time taking care of and doing things for other people. I'm always running someone around to appointments, activities, or places with friends. I do my best to plan out a menu, shop, and cook only to have people not eat or tell me they decide to starve themselves to lose weight they can't afford to lose. I don't understand why people don't seem me melting down until nothing. I just don't get it. 

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. 

Progress is progress.

It's so funny to look back at old blog posts, mostly between 2010 and 2012, and see how hard I worked at losing weight. I was out there every day doing my walk/run and I was portion control measuring everything. At some point I got to 160 pounds and it was like I was the skinniest girl in the world. 

Here I am all of these years later and I'm still at it. I'm doing it differently, that's for sure. In December I started going to the doctor to see what I could do because what I knew to do wasn't working. While a bit depressing, I at least got confirmation that my medications and my conditions post AFE are major issues so it isn't rocket science that I'm gaining weight like crazy. 

In December I started at 206.1 pounds. It wasn't my heaviest, I know I hit around 215, but when I really started to lose weight again I was around 211 pounds. 

Since starting at the doctor, I try to eat a lot of protein, around 50-75 grams a day split throughout the day. It's a lot and I'm telling you, I'm starting to hate protein. I'm terrible at the vegetables and I'm really trying with the fruits. I've really cut down on my carbs (except pasta night, not sorry) and dairy. Overall, despite all of my stomach/digestive issues, I'm doing well. 

I'm also exercising. Matt said he needs to lose weight so we've been walking a few times a week. I have to get 140 minutes of exercise in during the week. It doesn't matter what it is, I just have to move my body. 

So we walk. I don't know what the plan is for winter, I'm hoping we can get the treadmill from storage here. Maybe one of us can use that and the other use the bike thingie and just take turns switching. I don't know. I'm trying to do leg things because they hurt so badly all of the time and my doctors tell me if I keep them moving it will help the progression of rheumatoid arthritis, so that's what I'm doing. 

I started with a size 16, almost 18 pant... they were pretty snug. I'm officially in a size 12 pant and I'm not mad about it. My shirts were 2X and I'm on that edge of L and XL. This shirt was one I bought before I got pregnant with Penelope and it fits again. 

I feel better. I don't feel great, but I can feel an improvement. Self esteem wise I'm better. Also not great, but I know I'm in a better place than I was when I started. I don't feel as self conscious even around Matt, so that is big. Not that he would ever, or has ever, made me feel anything less than beautiful, but all of the positive reinforcement means nothing if you don't believe it, right? 

I'm still continuing. My healthy goal weight was 160 pounds, I'm currently at 170. Once I get there I think we do lab work again to see what has changed. We'll see. I'm pretty proud of myself though. The fact I've been able to consistently exercise even though it hurts like hell makes me feel like a bad ass. Just keep swimming. 

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. 

Stop crying your heart out.

I feel like I've hit an actual wall. I don't know what's going on with my depression but it has flared up and I'm really struggling.

I don't blame the quarantine or coronavirus so much, though that has had an impact. I think this is just how life is now for me and to be frank, I'm sick of it. I am tired of treading water only to keep being overwhelmed by waves.

I really miss every day, every week, every year that I took for granted. All of that time where I had good days and things were OK. Even on my worst days I felt better than I do know. I don't know why everything feels amplified. I can feel a huge difference if I forget to take my medication, so I know that it is working. I'm at the highest doses possible. I'm starting to wonder if I'll have to just deal with awful medication side effects to feel better.

I haven't been sleeping. That's been a thing for awhile. Don't come at me with your melatonin, I can't take it with my other medications. I hardly eat at all. If I do it's just munching on something but not enough to be considered a meal. Even if I do sit down for a meal I can't taste it and I lose my appetite immediately. I am so tired the entire day. I have such a hard time getting out of bed in the morning. A lot of mornings I cry because I just can't do another day.

Is it ironic that it's the week of Mother's Day and I feel like the worst mom? I have to rely on Olivia and Jackson so much and I hate it. I feel like I'm stealing their childhood away. Granted, its less time on YouTube and video games for them, but still. They didn't ask for this. I love them so much and I have no idea what life would be like without them.

I feel terrible for Penelope and Lucy because they won't know a happy mom, excited to take them to a park. I love them so much but god help me, my days are so long and so hard right now.

I am lucky I have family that care. I am lucky to have friends who check on me. I have a support system when so many people don't.

I just feel so tired and I don't know what I would even say. I was thinking about that earlier, if I had to list three things that are at the top of my bubbling emotions, I have no idea what I would say. I can't even tell people what it is that is bringing me down. Things like this make me feel like I no longer have control over my mind. I can list all of the things I feel but none of it is different from yesterday. Or last year. It's always the same and I'm so tired of it.

Oh well. It's only Tuesday. One day.

It can always be worse.

Revenge of the Digestion System and Changes

When I posted on Facebook that I was going to have my gallbladder removed everyone told me how great I was going to feel. So much better! I have friends who have had it done and they all gave me good post surgery tips and talked about changes they made.

Cool.

I'm like two weeks out from my surgery and you know how I feel?

AWFUL.

I am nauseous ALL of the time. I have had the worst heartburn of my life and my Omeprazole isn't doing squat for it. I ate an entire bottle of Tums over the course of a day and no relief. The idea of food and eating it makes me want to throw up. I have been trying to eat toast, maybe a handful of grapes, some saltine crackers and all of it makes me want to throw up.

Even better?

It doesn't matter what I eat or how very little of it I have, I will have diarrhea. Not just regular, this is inconvenient diarrhea, but it is painful. The cramping is painful, too.

I did go to the surgeon follow up and I didn't meet with him, I met with one of his PA's, and she didn't seem concerned at all. Which... I can't imagine this is normal. Seriously, I cannot live like this. The closest comparison I have to this is morning sickness but EXTREME.

I am so tired and physically weak because I'm not getting enough nutrition but I cannot stomach anything. I messaged my gastroenterologist to ask for help. I see him at the end of March but I am going on that Washington D.C/New York City trip with Olivia (I'll post more about it next week) and I can't imagine going on that trip like this. I can't even run to Target without making several bathroom trips and then breathing and counting randomly so I don't throw up on the floor.

It's bad. So that's how my recovery is going.

***

Really big news that has come (literally) out of left field: we are moving.

I know, didn't see that coming, did you? I haven't talked about it much because I'm still just trying to process it myself, but my parents have moved to Florida to care for my grandparents. It is no secret that since my AFE things have been financially tight. To give you a better idea, when I had my AFE we had less than $5K in debt that wasn't a vehicle or house. It wasn't bad at all and we assumed I'd be going to work so it was manageable. Once it was clear that things weren't going to be the same and I wasn't going to work, we got a little nervous.

We were lucky to have a GoFundMe account and that is what kept us from losing our house because those first six months Matt was working sporadically between helping me at home, taking care of kids, getting me to appointments, etc. If you aren't working, your paychecks aren't covering the bills. We used that money to basically float us for six months. We never planned on me having disabilities, seeing so many specialists and having all kinds of tests, trying new medications and it being a never ending cycle. For the last three years when I say we are barely getting by, I am not kidding. We are in debt up to our eyeballs and the only solution right now is to plug the holes in the boat.

Our house is a hole in the boat.

Not only can we no longer (realistically) afford it right now, but our house is big. I mean, it looks big, but if you walk up and down the stairs all day? Exhausting for a healthy person. I am no longer capable of cleaning it. I can't take care of things. Some mornings I can barely get down the stairs when I wake up. It's just too much.

But let me be clear, I don't love this house. It wasn't going to be our forever home. It was really just to get us through raising the kids and then we would downgrade. Even though I'm not in love with this home, I'm really sad to move. I'm sad because we are moving to a home that is half the size, maybe even less. Six people = one bathroom. I feel like we're all being punished because I got sick. It's all my fault we're in this predicament and I feel guilty as hell. I know it isn't rational and we're here whether I feel guilty or not. I am scared that we're not seeing a larger consequence later on down the road. I trust Matt wholeheartedly and when he says this is what we're doing, this is what we're doing.

So where are we going?

We're moving into my parent's old home. I grew up there from age 14 and up. The house has sentimental value and the thought of someone else living there really bothers me, so I guess on the bright side I won't have to navigate those feelings right now. We will be saving a TON of money each month to apply towards debt. It does feel like a weight is lifted, like we're going to move forward again. We've got five years to get the debt under control and then we can either buy the house or we can move somewhere else. It's all kind of up in the air and if you know me, not having a concrete, permanent home base is terrifying for me. As a kid I really hated moving and it never made me feel secure. I worry that I'm doing this to myself now but also to my kids.

Fortunately, the only changes they'll have is a different bus stop. I'm not sure when we'll be IN that house because Matt has to build a bedroom for him and I (the house is only a 3 bedroom) in the basement, and then we'll start moving things over. We'll have a few things to fix here before we can list our house and hope it sells quickly.

I don't know if you are the praying type or just the kind who sends positive thoughts, but we would take any and all of it. I'm really feeling anxious, scared, and uncertain. I know all of it is my own issues and I'm going to do the best I can to make this move not a pain in the ass but also be kind to the kids. Olivia and Jackson really aren't thrilled, and Penelope and Lucy are so worried we won't be bringing their toys, stuffed animals, books, clothes, etc. The concept of moving is totally foreign to them and not Lucy so much but Penelope looks scared and I feel really terrible. That somehow my body has failed us all and its my fault they are sad/mad/scared.

Sigh.

So that's the scoop.

It's going to be OK. It can always be worse. I am thankful we will have a home. I am thankful we have family who help us out. I am thankful to have friends who have already told us they will help us in any way. I am thankful for my therapist who starting next week is going to see me have panic attacks during sessions again. I am sure she has missed them. HA!

Sara's 2019 WISH LIST

I cannot even tell you how hard it is to put a wish list together because I'm at a weird point in life where I like presents but I also feel weird getting them. Does that make sense? I mean, when in doubt, PRESENT. Always. Obviously. But I also really struggle with what the heck do I even want? So this is the culmination of an entire year of thinking.

WISH LIST

1. Handheld Fan: I know this sounds dumb, but these things are awesome. I get so unbelievably warm out of nowhere in the summer and having a fan I could pull out of my purse would be amazing.

2. A New Mop: You know you're old when the idea of a new mop is exciting! But our current mop is the worst and sometimes the steam mop just doesn't do it, you know?

3. No Tie Shoes: I have become a huge fan of sneakers I don't have to tie and are squishy.

4. New bedding: We actually only own one comforter so when ours is dirty it's an entire day affair to get it washed and there have been times we've been up to almost midnight waiting for this thing to dry. Someday I'm going to have a washer and dryer that handle huge comforters but until then... it's a process. So having another one so we aren't exhausted waiting for the thing to dry would be nice. 

 

5. Socks. I really like socks. I can't help it. 

  

6. Scrapbook Goodies: If you know me at all you know my favorite scrapbook supply company is Doodlebug Designs, so anything by them is my go-to supply.

  

  

7. Books. You guess had to know that books would OBVIOUSLY be on my list!

    

  

  

  

8. Sweeper Thingie: Again, pulling into Loserville, because I hate to sweep. Hate it. I would vacuum all day every day but I hate to sweep. Unfortunately, I have to sweep every day at least twice and even still... I feel like it just isn't enough.

9. Gift Cards: I know people hate to give gift cards, but I really love them. I mean, do you really want to go buy me bras and underwear? I mean, no. I love my friends but I'm not trying to buy you underwear. I have a dog who likes to eat underwear and so I need some. Gift cards to Victoria Secret, Lane Bryant, Target, Kohl's, Maurices, Old Navy, etc are awesome because I can buy the things that fit me when I feel emotionally ready to enter a dressing room. You know what I'm talking about.
10. iPad: This is a total pipe dream gift but still. You never know.

11. Fitbit: I just want to know my heart rate and how many steps I'm doing. I don't want anything fancy because I won't be able to figure out how to use it, I'm a simple gal.

12. Gift Cards, part two: Matt and I would like to go on dates but honestly, if it isn't a childcare issue it's a cost issue. We like to go out to dinner and a movie, so gift cards to restaurants are cool. Or ones the whole family could use because all six of us doing stuff together is pretty expensive.

Honestly, that's a lot. I really like anything I end up getting. It's really nice to get something because someone saw it and thought of me. I always really appreciate that. It's always nice to be thought of.

What is on YOUR wish list this year? What is on your kids or grand kid's list? I'm still trying to get ideas for Olivia and Jackson because their lists weren't super helpful for me this year.