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. 

Neurology is full of adventures

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

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

He wasn't even that nice. 

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

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

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

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

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

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

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

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

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

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

Medical update, weight loss, and cat butts.

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

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

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

BUT. 

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

But you know, that's too bad. 

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

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

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

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

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

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

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

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

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

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

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

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

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

CT scan from hell.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

ONE, you guys. 

One. 

I had three. 

THREE. 

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

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

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. 

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

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

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

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

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

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

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

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

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

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

Which, isn't that grand? 

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

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

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

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

Oh well. 

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

Have a good weekend, lambs. 

The start of summer 2020

Honestly, it feels like it's been summer for months already, right? We've been home for so long we aren't even feeling that summer freedom this year. 

Since moving to the new house we've been slowly setting up fun stuff for the kids to do since we really can't go anywhere, and the stuff we'd like to do isn't even open yet. Every time I want to say screw it and book something, a rash of COVID-19 positive cases goes up and then I get nervous. I'm getting weary, folks. 

Anyways. 

Matt set up the pool for the kids. I'm just grateful our pool from last year has no holes from the move and works great because the chances of buying a new one this year is slim to none! 

The pool isn't very deep (like 30 inches, or 33 inches) so even the little girls can get in it and move around well above the water. Of course they can't go in it without someone watching them, but they are pretty good about it. We haven't had too many pool worthy days but they seem content to go out even on chilly days (to me). 

Poor Olivia hardly gets to play between Upward Bound and her job, but Jackson usually waits to go in until she can. Some days I can get him to go in early and the little girls love it. On that day the water was FREEZING and I don't know how any of them lasted as long as they did! 

I haven't done a medical update in awhile because its easier to add a lot of little things up for one post. For the last 8-9 months my hair has been falling out at an alarming rate. It isn't medication related, it isn't thyroid related, several doctors have checked various things, it's a mystery. (Honestly, I'd be more alarmed if someone had a reason for it, I'm just used to everything having no real reason.) To put it into perspective, I could only brush my hair (or wash it) (or touch it in general) once a week because it would just come out in huge clumps. My hair normally is extremely thick with a wave/curl to it and if I used a hair tie, I was lucky if I could get it wrapped twice without the tie snapping. By mid-June my hair tie felt loose with 4 wraps around. I would run my hand in my hair and have a baseball size clump. 

To be frank, if I had cancer and was on chemo, this is the point I'd consider shaving my head. 

I'm not on chemo so instead of shaving my head, I cut my hair. My hair was down to the middle of my back and I cut it to my chin. My hair is still falling out but not nearly as much so I'm hoping losing the weight of hair helps a little. I do miss my long hair though, and I decided I really don't like my hair this short. 

Oh! I forgot to share my June TBR stack! Not a very big one, but I was trying to be realistic. I have two of them done already (First & Then and Creole Kingpin), I'm working on Roomies, and then I'll squeak Haven in next week. Or maybe this week still, we'll see. 

Also, for those who asked if I was still doing the weight loss thing, I AM! I'm actually doing really well. I see that doctor again on Friday, and I'm excited to maybe get some official numbers! I've been having to go by my scale with I know is 4 pounds off but might be more, but at my last doctor appointment they told me I was 179, which is around 30 pounds less than where I was in December. I started around 212 pounds. I'm not doing anything more than curbing my diet and walking. Totally serious. I'm supposed to get 140 minutes of exercise in during the week and I've been diligently tracking how much I do. Most nights I walk with Matt and some days I get to walk with a friend, so its nice. 

For the rest of the week I have book reviews (Tuesday, Wednesday, and Friday) and I hope to have some more photos for Thursday to share with you all. How is your summer starting? Do you have any plans? 

My brain is mush.

I know I can't be the only one who is left with a mushy brain after quarantine. I told Matt I can't even enjoy the freedom of not being in quarantine because I know enough science to know a second (or god forbid, a third) wave is coming and I know we're going to be locked in again. 

Which is fine, don't get me wrong. I'm not trying to visit with folks only to get sick and die from something sharing the name of a beer when I don't even drink alcohol. Hard pass, people. 

So I don't know if I could tell you what is even happening in life because.. I'm just not sure. Maybe I can get it together for tomorrow.. we'll see. 

I guess I can do a health update, I suppose. Well, today I'm going to see my pulmonary doctor and we are going to check out my lungs and hopefully all is well there. I'm assuming it isn't a virtual visit because if it is I'm going to look REAL stupid showing up. I've got an appointment in July for Neurology for migraines. Those have made a real comeback and I'm pretty much over it all. The bummer is that my neurologist, the one who was there immediately after the AFE, has since retired so now I have to get matched up with a new one. Apparently, there are only two choices right now and I didn't even get a pick, I was automatically put with the more experienced one. I guess he is really big into Botox, and no, I definitely do not want Botox so I can already assume how this appointment is going to go. I'm also fairly sure this is the guy who did my test that they poke you with needles all over. That guy made me cry and essentially told me to buck up. 

I'm not even kidding. 

So if its him again I will have to just make a scene, I guess. I can't even say send me to Mayo Clinic because I have seen those neurologists a few time and they are just as bad, if not worse. 

I continue with therapy but I won't lie, I can't wait until I can go in person again. I have psychiatry next week and hopefully I can see him one more time before he leaves in August. It's a bummer to lose my neurologist but it's even worse to lose my amazing psychiatrist. 

Other than me, we've got a few things happening around here: 

Olivia started her first job! I maybe already mentioned this, I can't remember. She is doing office work at Matt's job so for awhile he would pick her up at lunch time and they would ride together. She starts Upward Bound this week so I'll get to drive her to work and she can ride home with him. She has been pretty excited about a job and she is actively saving for a car. Oh yeah, she turns 15 in the fall and we've already been talking about driver's education and seriously, how am I old enough to almost have a driver? Let alone a high-schooler?! 

I seriously promise by the end of the week I'll give you a tour of my craft/office/library room. Swearsies. It's been a bit of a bummer because I haven't gotten to have any real time in here. I set out a crafty thing to try and then all hell breaks loose and I have to take over upstairs. It is really nice to have a door, that locks, but it doesn't seem to matter when the only time I can come down is when everyone is in bed but then I want to be in bed too. 

One of my favorite things about this house has always been the backyard. It's pretty similar to when we moved in when I was just starting eighth grade. I don't remember a lot but I do remember thinking the yard made me think we were fancy now. It had an actual flower garden area and then all around the house had flowers and bushes. There are two huge trees in the backyard, a birch and a horse chestnut tree. There used to be a red maple but I think it was really damaged in a storm and it had to come down. But as a teen I used to lay on a blanket under the two big trees because it was always shady and perfect. I had forgotten all about it until last week when Lucy and Penelope were under there and I went over to bring them a drink and for whatever reason, the shade of the tree and the noise of the leaves reminded me of that. So I sit and stare at the trees a lot. 

I have a love/hate relationship with the wildlife here. We have rabbits, and I LOVE rabbits, and they are really quite large. There are two specifically that do their version of a cage right several times a week and last week one ran right on top of my feet. He gave zero cares that I'm standing there. Then there's THIS jerk of a squirrel. He will come up on the deck, right up to me and throw his scraps from whatever he's eating at me. I don't know if this is his silent intimidation thing or what. I was able to get a picture of the gangster squirrel. He just sits and stares at me like he's waiting for me to make a move. Or plotting my death, honestly it's still a toss up. 

Speaking of large animals, I have recently hit the 25 pound weight loss mark (I know, I kind of forgot to post all about that stuff, so I'll try to soon) so my reward was eating an entire box of Better Cheddars in one sitting. 

Nope, totally not good for you. And nope, I don't actually care. I remember these tasting way more cheesy as a kid but I don't care. They are still good and I want all of them. They are super hard to find though so when I do find them, I have to buy them. #noshame

How is your summer starting? Do you have any plans? We officially cancelled our road trip and I think we're all really bummed out about it .

Weeds, weight loss, hair loss, over it

Let's just do a week/weekend roundup. I'm trying really hard to take more pictures of our day to day life because what if this becomes like the 1918-1920 flu pandemic and people want our souvenirs for museums one day? I don't know what I'd even give them. Maybe I'll save an empty container of Lysol wipes and my masks.

What would you save??

Anyways, it seems like forever since I posted about having to lose weight and I bet you thought I feel off that wagon but nope. I'm still bumping along the road. For the most part I make good food choices but I'm honestly never hungry. Since having my gall bladder taken out I have lost all appetite. Not only that but anytime I do eat anything (or drink something other than water), it becomes a repeat of the Linzess situation and I just can't live like that.

It isn't even reasonable.

I've eaten quite a few salads and I just have to ask, and maybe I'm an idiot, but why do they put weeds in it? WHAT IS THAT? It looks like the weeds that grow in your yard that you spray chemicals on so they go away. Seriously. I asked Matt and he almost choked on a crouton laughing at me. 

In other news, Lucy has taken to reading to her baby dolls. Well, she comes up with her own colorful story but it is always hilarious, especially when she tells the doll to settle down. 

The girls got to wear swim suits for dance (via Zoom) and its clear we need to get some new ones. Well, I'll buy one for Pep and then Lucy will get Penelope's old ones. This week is pajama week I think, AND it will be on Penelope's birthday!

A few things here: 1. I hate telehealth doctor appointments. I hate them. I don't even Facetime people because I had all video calls. Strongly dislike. 2. I can't remember if I told you I'm losing hair. Like, a LOT OF HAIR. If you know me in real life you know that I have VERY thick hair that is normally curly/wavy (I usually straighten it because its easier for me to maintain day to day). You can kind of tell in the photo that my hairline is receding. I'll have to get a better photo, but my hair is half the thickness it used to be.  Half.

I'm 95% sure it is from taking Arava for my rheumatoid arthritis, so I've stopped taking it. It's been about three weeks now and the loss isn't near as bad as it was, so I'm hopeful it'll grow back some? The doctor tried to tell me that isn't a side effect but it clearly is but ALSO, it turned out to be why my mom doesn't take it. So clearly I'm not nuts.

Oh yes, my neighbor snow blows his grass, apparently. I do feel like there is more action/more people doing stuff outside in this neighborhood than my last, so that has been fun. Olivia and Jackson helped Penelope and Lucy ride their bikes down the street and some guy was cheering them on and honking his horn. 

We also had our first freezies of the year. It was chilly so Penelope and Lucy had to put theirs in oven mitts to hang onto them but still, its a win. (Notice Penelope's shoes are on the wrong feet?)

You can also see Olivia trying to give Twinky some of hers but I'm not sure if he likes cold things so much. 

Jackson being an absolute dork. He's really been helping me with hauling things out of the house or bringing things from the garage to the house so that's been nice. 

Matt and I have been trying to go on lunch dates on the weekends because we really need to spend some kid free time together (it is a priority of ours this year) to de-stress. I saw on Instagram that one of our favorites, Chilly Billy's was open with very limited hours so we went and it was fantastic!

It was even sunny! And hey- you can see how much hair I've lost! Not just hair on my head but eyebrows and some eyelashes, too. Totally sucky because I was really feeling good on the Arava but man... I can't handle that kind of hair loss. 

Oh! The big library/craft room/office reveal is coming soon! Matt worked SO HARD on this room and I am so grateful. I told him yesterday that it really is better than my old room. For real. Even better? I'm in the basement, as far away from people as possible, with a door that locks. It's so great. But here's the sneak peek I posted on Instagram this weekend. 

Oh- so back to weight loss! I can't find a before picture (?!?!?!?!) but here is today. I'm down to a size 14 pant but I think I might be close to a 12? Some of my 14's are big but the 12's are just a little uncomfortable still.

And! Let it be known that my boobs are no longer perky, but officially saggy. Matt asked if it was a no bra day today and nope. I had a bra on. A new one, in fact. He even checked for a strap in the back to confirm and yeah. That made me feel crappy. Sigh. Treasure your perky boobs, ladies. Treasure them. 

Pandemics are not fun.

Today I should be exploring Washington, D.C. and getting excited for a five hour bus ride to New York City.

But I am not because of a pandemic.

I have a lot of feelings about this pandemic and how people are handling it but the top two feelings are anger and fear.

I'm angry that people think it isn't a big deal, refuse to quarantine, and for whatever reason think this is all media hype for fun. I don't get it, but not everyone can be bright bulbs, right? I am legitimately scared because I am immuno-compromised. It is dangerous for me to get a cold let alone the flu. If I get any kind of sick I have to increase my medications and hope for the best. I can go to normal to organ failure in no time.

People like me really need you to Netflix and chill.

I really need you to stay home. Marie Kondo the hell out of your house. Do your spring cleaning early. Read a book (or ten). Learn to make something from scratch. Catch up on laundry. Take naps. Literally do anything except leave your house.

I know its hard and it really sucks. I have four kids, BELIEVE ME, I GET IT. Our governor has closed schools until April 6 and starting next week my middle school kids have to do school stuff on their laptops. I have no idea how I'm going to keep high energy Penelope and Lucy entertained in the house for weeks on end. It isn't like I can just whip out an activity, we're spread out between two houses right now so I have no idea where any of my stuff is. Crafts? No clue. We found books and games but if you think I want to play hours of Candy Land and Chutes and Ladders you are insane.

I really hope Matt can make huge progress on our room so that we can literally move during this time and that'll obviously keep us all busy and I'm sure time will fly by.

In the meantime, I have no idea if our big adventure will be rescheduled, I really hope so. Cross your fingers. Olivia's dance competitions have been postponed, we have no idea when they'll happen. Dance classes are also postponed, which makes sense. I'm grateful that I was able to buy some groceries so we can hopefully make it. I am grateful that we had the ability to purchase extra things. I am grateful to have a medical team who understands my situation and is helping me through it. I am grateful my parents are here because that makes this stressful time a little less crappy.

Next week I have four doctor appointments and I just really hope I can get to all of them.

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!