Weight Loss Journey: Bring on the professionals!

Admittedly, I didn't do a damn thing last week. I am really struggling with the season change and I always forget how tough the fall is for me until I'm in it. I feel my depression getting worse, my stress level going up, my anxiety going up, and everything on my body hurts. You know that feeling when you feel the flu coming on? You're achy, it's like your insides start to feel warm but you're actually cold, and you get that dull headache?

That's my every day.

It just progressively gets worse and worse until summer. So... that's a long haul. But it's true, I feel like I have the worst flu of my life for nine months of the year so that's really exciting and super fun to work through.

I have kept my diet pretty good and I haven't been overeating, or over snacking. I actually eat much smaller portions at meal time (I'm becoming notorious for eating half a sandwich and people are making fun of me but truly, even a half is just... too much.)

I do need to do more exercise but this week the kids go back to school and I will have about two and half hours of kid free time (not as much as I was hoping for, but I will absolutely take it!) and the plan is to absolutely do some kind of exercise. Whether it's a walk, a BeachBody workout, something.

Since having Lucy and losing huge chunks of memory, the first thing that I do every morning is check my Facebook memories. I know some people roll their eyes and think that's dumb but it's actually been so helpful because I get to see stuff I know I've forgotten. (Which only reminds me that everything I share, good and bad, on Facebook will be helpful for me later. Every time I post a status that worries people- oh well, because I know in a year from now, I'll be able to know where I was at the previous year.)

The other day, this picture showed up.

It blew me away. It's from a trip to Chicago in 2012 with a blogger friend at the time and our families. I don't remember the trip at all, but Olivia and Jackson do and they said we had the best time. But I look at this and think, holy hell- I look amazing. It's weird to think at the time I was running two to five miles every day and I was so unhappy with how I looked. I felt like I had so much further to go.

I'll tell you what- I wish I was that fat now. Honestly.

It also is startling to see me so happy and glowing and know this person would be dead in a few years. It's stuff like that that always freaks me out.

Anyways.

So when I was at my rheumatology appointment last week we're going over my lab work and she tells me my inflammation markers are much higher than they have been even though my methotrexate should be bringing them waaaaaaay down. She's increasing my methotrexate to the max level and I'll need tons of lab work for awhile and if this doesn't work I'll be on injectables and that's a whole other thing I'm upset about but that's another day.

She asks me how I'm doing with exercise and I tell her what I've been doing and how I'm really upset that I'm not losing weight. She is putting in a referral for a doctor locally who is a bariatric doctor that doesn't deal in surgery, but is also a family practice doctor. He essentially looks at ALL of your diagnosed issues, looks at all of your medications, and helps come up with a plan to lose weight.

A requirement for this is to read his book (and yes, this feels weird to me too but whatever- I want to see this doctor:

   

It was only like 76 pages or something so you know I flew through this in a day and there was some interesting information in it and I have a better idea where this doctor is coming from and kind of what to expect when I meet with him. 

So I'm just waiting to hear back and make an appointment. But I'm kind of nervous. The information I got says you meet with him monthly until you hit your goal weight and then every one to three months for maintenance. He sounds really in depth and thorough and I'm really, really hoping this helps. 

Cross your fingers they call this week to set this up! 

The cusp of 3.

I often wonder if I am always going to feel the way I do now about Lucy's birth. My therapist says it might change over time but it might not, because your body will always remember what happened to it, like a reflex. I might not remember, but my body does so there is a natural fear response happening. Which is such a weird thing to think about but I suppose it's true.

It's hard to tell you exactly how I feel on this day. The day before Lucy was born is my last real memory and that's not even really true because I don't have memories like you, I can't replay a scene like an old movie in my head. What I remember are the actual snapshots that we took of the day.

I remember Penelope standing next to roses at the Rose Garden in Duluth. I don't remember Olivia or Jackson. I don't remember Matt, but I remember taking this photo. It's so weird, but mostly scary, to look at this photo and know that that person died the very next day. It doesn't look like me. Well it does, but I don't recognize it as me. To me it's like looking at an ex-wife of Matt, which is weird because I know it's me..... but its not. 

It's strange to know this woman is dead. She died the very next day and somehow I'm here in that body and nothing about it feels familiar. I cannot tell you how many times I have stood in that exact same spot to see if a memory would come, would I remember standing there? Would I remember what it was like to be pregnant? Would I remember what it felt like to have a baby inside of me? 

To say this has been a hard three years is an understatement. I can't remember all of the doctor visits, the medical buildings, the procedures, the lab work, the waiting rooms, the hope, the disappointment, the frustration, the desperation, the resignation that I've had in these three years. I know its there and I guess its best if I don't remember it all. 

Not one person in the whole world can tell me that I haven't tried to get better. That I haven't marched forward, kept swimming, climbed the mountain, done the work. I have taken bad news like a champ and not told anyone. I have accepted the looks from people who think I'm crazy, I've been told to "just deal with it" and kept my mouth shut even though I want to scream, "I FUCKING AM" but I don't. I've become a better person because I really believe if I do good I will get good back and I just so desperately need that some days. 

I have confronted really awful truths from my past that I haven't told anyone, ever. Matt doesn't know. My mother doesn't know. My best friends don't know. I can see things around me a little more clearly now which is bittersweet because I realize how awful some people are and I never saw it before. I have lost friends. I at least know which ones are fair weather friends too but that comes with its own wave of disappointment. I have battled crippling depression, I have sat in darkened closets and in my car in the dead of winter wishing I could just die and thinking that being alive is really the cruelest punishment of all. 

I have confronted the things that hurt me the most. Did you know that I never look at my scar? I think sometimes maybe I don't lose weight because if I did the scar would be more prevalent on me. It's just a scar, millions of people have them and ones just like mine, it shouldn't bother me, but it does. It brings feelings of anxiety and panic. I get a tingling in my chest and I can't catch my breath. I feel fear, like something is trying to get me and I need to run.

So I don't look at it. I don't look at myself in the mirror anymore because I don't know this person or this body. I want to be old Sara so badly and I know I can't and so I feel shame. I feel shame because I'm not pretty and I'm not skinny, and no matter how many times Matt assures me I'm still attractive I don't believe him because he has to say that. 

I hate feeling broken. I hate feeling like everything in my body is malfunctioning and there isn't a fix. Sometimes I lash out. Sometimes I scream in a pillow until my voice is raw. Sometimes I go on walks and cry so hard neighbors look at me, probably wondering if I'm OK or crazy. Sometimes I sit and my car and cry. Sometimes I cry in the shower. Sometimes I cry when the girls nap.  I have to deal with everyone else and their problems and I'm dying a little more inside. I know it's daunting when I tell people it's going to be like this forever, like "Ugh, we have to help her FOREVER?!" and believe me, what you feel? I am more angry than you are. Trust me.

And then I have Lucy.  Lucy is really the best thing in the whole world. I wish I remembered what it was like to be pregnant with her. I wish I could have seen her born or remember what it was like the first moments with her. I wish I remembered what she was like as a baby. What she smelled like. I wish I could remember what her fuzzy hair felt like. How little she was. I wish I could remember her looking at me like I was the greatest thing in the world. Or what it felt like to rock her to sleep, or hold her on my chest. The irony is that I don't do well around pregnant women or little babies because they scare me and are a PTSD trigger... which I never knew was a thing until I'm in the thick of it.

It's weird to think I took this picture on Sunday, but I don't remember. I can piece things together. I know we were at Thomas the Train, I know we were on a train, I know it was summer. Anything else? I have to ask Matt because it's not there. I know I think I'll remember, I always do, and then I don't and I'm angry that I'm so stupid and thought that in the first place. But I forget how quickly I forget.

So tomorrow Lucy is 3. Tonight I'll go to bed absolutely petrified of what will happen. I'll be scared, panicky, and sad all day. I will try not to show it because I don't want to ruin her birthday. I will cry when I go to bed. I will pull it together because on Friday she has a doctor appointment and I need to pull it together. On Saturday we have her party and I will try to not cry and not ruin it. I will try to smile and be happy. Because ultimately, nobody cares. And it's OK. It's not your burden. It's not your PTSD or depression. It's not your trauma. It's not your stolen memories. You aren't broken. You don't understand where I'm at. You don't know that all the therapy in the world can't fix this and suddenly make me normal. And it's OK.

I'll keep trying anyway. I will fake it until I make it. I will get through today. And the next. And even the next after that. I can only do what I can do.

Book Review: Expecting Sunshine

*Full disclosure: I had this review typed and ready to go for last week (Friday) but I pulled it because I felt like I really need to include why I chose this book so that is why this is up today and why I have two posts today.*

Expecting Sunshine - Alexis Marie Chute

Anyone who has experienced—or knows someone who has experienced—miscarriage, ectopic pregnancy, stillbirth, or other forms of pregnancy and baby loss should read Expecting Sunshine, including those considering or already pregnant again. 

After her son, Zachary, dies in her arms at birth, visual artist and author Alexis Marie Chute disappears into her “Year of Distraction.” She cannot paint or write or tap into the heart of who she used to be, mourning not only for Zachary, but also for the future they might have had together. It is only when Chute learns she is pregnant again that she sets out to find healing and rediscover her identity—just in time, she hopes, to welcome her next child. 

In the forty weeks of her pregnancy, Chute grapples with her strained marriage, shaken faith, and medical diagnosis, with profound results. 

Glowing with riveting and gorgeous prose, Expecting Sunshine chronicles the anticipation and anxiety of expecting a baby while still grieving for the child that came before—enveloping readers with insightful observations on grief and healing, life and death, and the incredible power of a mother’s love.

If you read my blog you will know that I have four children. If you've read my blog for a long time you will know that I miscarried a child before I had Penelope. You will also know that I went through a fairly hellish delivery with Lucy and I've had some serious issues since then. I went into this book experiencing different kinds of loss than Alexis had but I could understand some of her feelings. I could absolutely relate to grieving, and trying to heal, but also trying to reconcile with a new future that you didn't plan.

In my case, I really struggled after my miscarriage because I could never understand what it was like to lose a life within you. We hear about it, we say we're sorry, and we move on when it's happening to others. When its you going through that and having to look on an ultrasound screen days later to see it is, in fact, empty, it's a completely different ball game. Even now it's five years later and I still think about that child and what they would have been. They would be going to kindergarten this year. I can't get too sad because I likely wouldn't have Penelope or Lucy and I can't imagine life without them now, but still. I get sad. My situation with Lucy could have been significantly worse because I could have died for good versus having died but come back. Lucy could have died. I don't talk about it much because people say I'm crazy, but after my entire ordeal I was told that I "most likely" will never be able to have a child again. I have all of my organs, but I no longer have working hormones, and they believe with all of the significant blood loss that it most likely damaged my ovaries. It's silly be we were DONE having babies after Lucy. That was it. Matt got a vasectomy anyways, as planned, and no more babies were going to happen. But still. Knowing that I no longer have that choice hurts. Every bizarre scenario goes through my head and none of them make sense because I'm 37- I'm not trying to have any more babies. What if Matt dies and I remarry and he really wants kids? What if in a few years Matt wants to try for another boy? What if I want to help a friend have a child? What if I don't feel "done"? What if.... None of it is rational but that doesn't make the thoughts go away. So I've gone through an entire grieving process of saying goodbye to that part of my life and walking into a new one.

So.

I went into this book with big feelings and I came out with even bigger feelings. In here we get an up close and personal look at Alexis and her journey through grief having to say goodbye to her son Zachary as it becomes he would not be leaving the hospital. They learn of this during her pregnancy so it has to be a special kind of hell to know you won't get to see any of those milestones or even get the bare minimum of moments with your child. We see her gradual walk through the grieving process and the support groups, and the test it was to her marriage and her faith. I really could relate to her feeling like she didn't need medication or a counselor because that was me in the months immediately after Lucy's birth. I was so angry when either were suggested to me by people because it felt like they were saying I could be recovering better, like I can't even do that right, but when my delivering doctor mentioned it, that's when it sounded like something I really wanted to do. I honestly credit her for me being alive (a second time) because had I not gone to those first appointments, I would have killed myself. I know it and I have said it many times. I really needed a total stranger to me and the entire situation to validate what I was feeling because nobody in my life was doing that for me in a way that didn't feel like them placating me.

Alexis would go on to get pregnant again and the worry and anxiety throughout her pregnancy were completely understandable and expected, but that doesn't make it easier on her or anyone around her. It's hard to make someone feel better when you cannot predict the future but you also can't understand what it feels like to be in that exact situation, so while I don't know what that pregnancy would feel like, I really could empathize and relate to that isolation she felt.

Overall? A solid 4 stars. The book reads incredibly fast and reading it feels like she's sitting across a table telling you her life story so it's not the monotonous voice that some memoirs have. The only reason I gave it 4 instead of 5 was because I, as it turns out, could not read about her labor and delivery of her baby Eden. Since having Lucy I have PTSD and I have a really hard time being around pregnant people and babies (especially newborn babies), but in a fun development, I can't hear or read about babies. So if nothing else, I've learned that about myself and that's upsetting. So that's on me. If it were anyone else they would give it 5 stars because this is really terrific.

If you, or someone you know, has or is currently in the process of grieving of a lost child or even a lost experience, this is a really great book to look into as a resource. Forget the self help books written by men who have never experienced it, listen to someone who has hiked through it.

   

I received a copy of this book for review in exchange for review, all thoughts are my own. This post also contains affiliate links which help keep my blog going. Thank you! 

Weight Loss Monday: Working Out With Strangers

I think I maybe mentioned last week that I found this "Weight Loss Exercise Class" put on by the hospital system I go to. I saw it online and then one of my doctors mentioned it so I figured for $5, I could give it a try. They meet Mondays and Thursdays from 5:30-6:30 and that seems do-able.

So I went.

The best is that I did not read that information well because I got there at about 5 and I felt like I was completely trespassing. The place was quiet and virtually empty. It said to meet in the lobby and thankfully I knew where I was going because I did physical and occupational therapy here, but I'm also here every 4-6 weeks for labs so at least I didn't run the risk of getting lost.

That's kind of great.

At 5:30 the very nice physical therapist assistant came and introduced herself, and then one other person came to the class, which was great because at least I wasn't alone. We introduced ourselves and the instructor wanted to know a little of our health background, basically to see what we can and can't do.

Long story short, we got to do easy stuff because I'm a mess and the other person had a boot on their foot because they recently had surgery. Not today, aerobics.

Oddly, while I did feel like I worked hard (I was fairly exhausted afterwards and went to bed at 9 and Matt said I was asleep within seconds. For real.), I also kind of wanted to do a little more. Which is GREAT, I suppose, but also a sign that I could easily over do it and really hurt myself and that would suck.

I think I'm going to keep at it because it's a way to get out of the house plus I'm doing something good for my body. Truthfully, I didn't go on Thursday because I was sick but I do plan on going this week.

Other than that, I keep walking. I have been taking the little girls with me in the stroller so that's an added workout because they are like 50 pounds in that stroller. But they enjoy it and look for animals. Lucy is always VERY excited about the bunny statue in someone's yard and hasn't figured out it's not a real bunny. I do need to find a route that has more shade, though. Half of my route is fairly shady but I'd like to find more shade if possible because I think I actually have a sun and/or heat intolerance. All of my illness in the summer? Pretty sure it's heat or sun related because I seem to get sick shortly after being exposed to either so that's a fun development.

Medical frequent customer care card? It's an idea.

I haven't given you a health update in awhile and while it's nothing exciting, it's worth sharing even if only for my own memory later on. I keep saying there should be punch cards for every doctor visit you go to and when you get a free card you get a prize or a discount. Something.

Rheumatology: My doctor has officially retired now and they haven't hired a new one so I'm seeing a nurse practitioner in the meantime. That's OK, it's not like I'm a snob on who I see, and I really only go every few months so it's not a big deal. Actually I go every six weeks but whatever. At every visit I have to do a lot of lab work because I'm on Methotrexate and that's something that needs to be closely monitored apparently. My C-Reactive Protein (which tells them the inflammation situation in my body) is still really high despite being on Methotrexate. The current theory is that I do not absorb or process medications well (which makes sense because that's what other doctors think about other medications) so I need to start splitting my dose to see if that makes a difference. I've been taking my 8 pills on Wednesdays all at once in the morning, so now I'll do 4 in the morning and 4 in the evening and we'll see how that goes. If that doesn't work then my next option is injectable Methotrexate. I am NOT excited about this because I hate needles and I absolutely cannot do it myself. I really can't. Even thinking about it makes me anxious and I feel like I'm going to cry. I really can't do it. If I don't want to do that I have to do infusions of Remicaid/Humira/Enbrel, etc. I don't want to do that because those gave my mom cancer AND who has six hours to sit for an infusion? My options aren't great and I keep feeling like maybe I want to save all of that until I get worse? I mean, I can deal right now and if I am going to get worse, let's save all of this until then.

In the meantime, she gave me this ibuprofen cream? I had no idea this existed but it does and it actually kind of works. I used it on my hands, my back, and the tops of my feet and by god- it works. It's supposed to be direct application of the ibuprofen but without all of the side effects of ibuprofen that can make your liver angry. So we'll see how that is long term.

Gastroenterology: I see this guy again in May. I think after that appointment I'll have to schedule for my follow up endoscopy to see if my Barrett's Esophagus has changed, if I have any more inflammation anywhere, if the polyps in my stomach have changed or if I have more gall stones. They did an MRI a few months ago on my liver lesion but it didn't look like it changed but they'll check it out anyways I think he said. I don't know what to even think about any of that. I take my omeprazole every day and I don't know if it does anything, I never felt like I had acid reflux before but it's clear that I do, so who knows? I still have stomach pain all the time so clearly that wasn't the fix. I am going to ask about Small Intestine Bacterial Overgrowth because I have almost all of the symptoms and honestly? I look six months pregnant right now. I keep thinking maybe it's my steroids I take, and that might be part of it, but this is just ridiculous at this point.

Endocrinology: I see him next week and I'm sure he's dreading it. I have a LOT to ask him and honestly, I get the feeling that my case is so complicated and weird that he just doesn't have time for it. But the other guy doesn't want me either and they keep trying to make me go to the Mayo Clinic, who doesn't do regular check in's. They find the problem when nobody else can and send you back to your local doctor. The endocrinologists in the other hospital won't see me because I have too many other overlapping things and they won't see me unless I change all of my care over, which I'm not willing to do because all of my doctors are actually really good. So I'm kind of stuck. I absolutely, 100% do not believe my last ER visit was stomach flu. So he's going to hear about that.

Pulmonary: I get to see this doctor next week, too! He's actually really nice and I always forget his name and what he looks like, but I remember he's really nice and talks to me like I'm special needs. But this is, according to my planner, my one year follow up to see how I'm doing with my c-pap machine and how I'm doing with my inhaler for activities. I actually really suck at remembering my inhaler which explains why my lungs feel like they are seizing when I do exercise, but I put an inhaler near my TV and where my exercise bike thing is so hopefully that helps. But the c-pap machine is AMAZING and I love it forever.

Therapy: I won't lie, therapy is really, really, really hard. My depression is still really bad and I've not improved at all on my scales they make me do every few weeks. I get better in one area, get worse in another. Then they flip flop. Then something else will get worse when something else gets better. It's frustrating. I keep going every two weeks and I've never missed or rescheduled one. I'm trying.

Psychiatry: Oh, I see this doctor pretty soon, too. I have to tell him that while my irritability/anger/unstable mood is better (not great but better), the Ritalin does literally nothing to keep me awake/alert/aware. I have also noticed I have a weird inability to cry. When things happen and it's reasonable for me to cry, I can't. It feels like when you have to sneeze but you can't, and you're standing there willing yourself to sneeze? That's what it feels like when I want to cry. But then, out of nowhere, I'll cry about absolutely nothing and I have no idea what's going on. It's really weird and I don't like it. But the Ritalin thing is not good so I don't know if he will try to increase my dose or just switch  me to the next option, Adderall, which really scares me. I hear that and I think Lindsay Lohan and let's all see where that led her.

Overall? I feel like doctor visits have really slowed down, which is good. I feel a little more normal now. I think I am going to buy myself a really nice journal and start writing down every stupid thing that I feel or that happens. I'm finding that something will happen and I think, "Oh man, I'll remember THIS and tell the doctor!" and then I don't and when I go I just shrug my shoulders and say I have no questions. But a few days later I remember and I feel stupid sending a message to ask. I feel like I'm wasting their time and I hate feeling like I'm crazy.

The struggle continues.

I haven't done a medical update in awhile so I figured I'd do one so people don't think I'm miraculously awesome.

• My mental health is... shaky. I don't mean that like I'm on the verge of hanging off the bridge, but just that it doesn't seem to have any consistency. Some days I feel really great and think my combination of Wellbutrin and Trileptal are working. Then other days I feel like a ton of bricks has hit me and I check the calendar to see when my next psychiatry appointment is. Turns out it's tomorrow. But then I think, what am I even going to say? I don't know how to convey what I'm feeling. I can't even do it here. But then I wonder if maybe it isn't just circumstantial. I'm dealing with two deaths, navigating those losses with my kids, we're broke and it stresses me out, and we're only three weeks into school and I feel defeated. I don't know I guess. I mean, this is better than when I was on just Wellbutrin, that's for sure, but it's hard to know where the top is, you know? Like what is my best outcome here? How will I know I'm at the best it can be? 
• Therapy is going good. Again, sometimes I walk out of there feeling like I have a good handle on how to handle things and cope, and then other days I'm crying in my car the whole way home. There appears to be no rhyme or reason to any of it. 
• I am realizing that I have either always had it and just didn't realize it, or I'm just developing and almost crippling fear of What If? What if I get cancer? What if there is something wrong with me and nobody is finding it? What if I never get better? What if they think I'm crazy? The list goes on. I feel like I'm not really able to convey how I'm feeling, like I'm not able to get the words and thoughts out, so I just give up and say I'm fine. I'm not fine. I'm very much not fine but I'm also tired of people telling me they don't know. 
• Rheumatology is kind of freaking me out. I basically dread going. My doctor is retiring so pretty soon here I'll be seeing someone new and the idea of going through it all over again is just daunting. She doesn't really know what to do for me. The methotrexate isn't working miracles and to be honest, being on that long term kind of freaks me out. My next stop would be Humira. I absolutely, 100%, no doubt about it, cannot inject myself. I can't even have Matt do it. I really struggle when a trained professional does it so I just can't. I know people tell me I'm being a baby and I know, and I don't care. I can't do it. So that means it would be Humira infusions. Which... that's scary because my mom did infusions of a few different drugs and she developed cancer. That's one of the "it might happen but probably not" side effects but knowing it happened to my mom scares me. The doctor doesn't seem to be worried but then I think- maybe I ought to just deal with chronic pain because that's probably better than fighting cancer. Right? But it's been getting colder and the seasons are changing and I can feel it in my body. I used to think people were weird when they said that but nope, I get it now. I feel like I have a fever and the start of the flu every day. It's just the worst. 
• I see Endocrinology in November. I have to ask about weight loss. I'm not kidding when I tell you I am barely eating 1000 calories a day and I have not lost a pound. I'm at almost six months of this and not one pound. It hurts to exercise. I'm so frustrated. I'm terrified because my grandma's cancer could have been found sooner had she been thinner and that's constantly going through my head. The cancer she had is what I'm at risk for and I keep thinking, if it's a freakish and bizarre thing, it's going to happen to me. I just know it. 
• Gastroenterology.. I don't even know what to think. I'll tell you right now I'm not taking that Linzess every day as prescribed. NOPE. Now I'm at the point where I'll take it when I feel constipated and plan to be home bound for several hours. It's not gotten any better, I am legitimately on a toilet for six or more hours. If I'm lucky I actually make it there before all hell breaks loose. Literally. But I still have stomach pain and at this point I'm so frustrated that I don't know if there is even a point for all of this. 
• I went a year EXACTLY without a period, then got one. Then a month after that I got some random spotting. I've had just a dull pain all of the time but it doesn't feel like period cramps. I figure I'll wait until my physical to deal with that. 
• I have THE WORST rash under my left boob. It's always my left boob. At first I thought it was a heat rash or like a diaper rash would be, but no. This keeps coming back and today it feels like it's on fire. No cream is doing it. I took a picture of it (sorry, you don't get to see my under boob) just in case I don't have it during my physical- which is how everything goes. 

• That's my medication spread. It's all fun and games when you've met your deductible but I'm really worried about the cost of all of this come January. I now have to have all of medications reviewed thoroughly periodically and that's really nice because honestly, how would I know if I shouldn't be taking something?? I finally labeled them with "AM" or "PM" on the lids so I'd remember which pill slot to put them in. 

So that's the scoop. I'm getting weary. I'm starting to feel resentful over all of this. I think I always kind of did but I'm recognizing and acknowledging it now. But it's OK- I have therapy next week. 

I may have lost some intestines.

Alright, I'm telling you right now if you get grossed out easily, just walk away now. I'm going to tell a story that isn't for the folks with a weak constitution. I'm disgusted by it and it happened to me so that's saying something.

Now that the disclaimer is out of the way...

So I did my follow up with the gastroenterologist, and I saw a nurse practitioner for the doctor. She was pretty amazing and I liked her a lot. She gave me lots of information, and that was really nice. She talked to me about Barrett's Esophagus, which sounds like a treat, and explained how all of my conditions contribute to slow motility constipation and how I have to really be on top of that and to keep things moving.

(I know, you thought you'd never know so much about me, did you??)

Which OK, I know all of that. She tells me I'll go for a Hida scan of my gallbladder because maybe my pain is that (spoiler: scan was fine, my gallbladder is just fine), but she thinks she's going to prescribe me Linzess for the constipation. She says I might have some "discomfort" for a short period but that over time this is pretty successful for people.

I say alright because if the constipation is the source of pain I am 100% on board with a med to fix that because this pain is awful. She tells me NOTHING ELSE about this drug. I see a ton of commercials for it so I figure it's well used and probably fine.

I didn't start the medication right away because I had all of these concerts and I didn't want to be sick during them because that would suck.

AND THANK GOD I DIDN'T.

I take my first pill this past Monday. I took it with all of my other pills (which I need to show you how much I'm taking- it's obscene) and thought nothing of it. I had a bowl of cereal for lunch. I had my one can of soda in the afternoon. At around 3 p.m. I started having horrible pain. Honestly, it was like nothing I've ever had. Then I thought, oh man- I have to go to the bathroom. Like right now. Like I might not make it crisis.

I did not make it.

I'm sitting in my hallway that goes from my kitchen to the downstairs bathroom like, WHAT THE HELL JUST HAPPENED?! Then I get to the bathroom and try to figure out my game plan and it starts again.

You guys- I have never in all of my life had explosive diarrhea. Never, ever. I've had stomach bugs that gave you diarrhea but it was always reasonable and manageable. I can count on one hand how many times I've taken Pepto-Bismol,  I seriously have never been in this situation. So I clean everything up, literally run through my house half naked and put different clothes on. Alright. No problem. I've got this.

Then it happens again. It's only been 15 minutes at this point and I am absolutely certain everything I had eaten over the last two days is now out. I figure this can't possibly keep up. I start drinking water because I don't want to get dehydrated and I take an extra hydrocortisone which I need to do if I get sick like this. I feel like I'm handling it.

Then it starts again. I have now been on the toilet four or five times in a half hour. I start Googling severe diarrhea. It's like 10 times over 24 hours. I'm certain I will pass that within the hour. I see on the Linzess insert that some people report diarrhea. Awesome. I decide I should call the gastro and just ask, because maybe this isn't normal.

Do you know what she says? She says this is what she meant by "discomfort" and that this could last, (wait for it).... TWO WEEKS.

I'm sorry, WHAT?!

So I tell her that she should be more clear because explosive diarrhea is not what I would consider "discomfort". Honest to god.

I have no adult diapers handy (because WHO DOES) so I fashion one out of 3 maxi pads. It was quite the look. I am now worried about going to sleep, will it just keep happening? I didn't even eat dinner because my intestines were screaming from the overworked afternoon they've had. I go to bed hungry.

Enter Tuesday. I'm now scared to take it. But I'm like, it can't be as bad, right? Surely with nothing left in my intestines it'll be OK?

It was not OK. I was on the toilet so much that I had a seat impression on the back of my legs that didn't go away all day. I hardly ate.

Wednesday was slightly better, it wasn't explosive anymore but still, anything I eat or drink comes out almost immediately.

Thursday has been OK. Again, still not normal bowel movements but I've worn the same pair of pants all day so that's a win!!

The best part is next week I have the preschool home visit and I have a concert I'm taking Olivia too so I really, really, REALLY hope this kind of goes away because diarrhea and any of these obligations are not going to go well together.

So long story short, Linzess is the devil and you will lose your bowels. On the bright side, I might be losing weight from it so YAY.

Hoovering all of the information

I've read biographies and seen documentaries of people who have had a really awful thing happen to them and in the aftermath they consume all of the information on that specific topic they can find. I fully understand that need now. Since having an Amniotic Fluid Embolism I have this unanswered need to know why. Why me? Why with my fourth birth and not my other three? Could I have prevented it? Is there something wrong with me that was a catalyst for that? The long story short is that I couldn't have prevented it, nobody knows why it happens, and it's next to impossible to test because they haven't been able to recreate an AFE in lab animals and there aren't predicting factors for them to essentially watch it happen in a woman.

So it's all very frustrating.

It also makes it scary.

I know that right after my AFE I really poured over the AFE Foundation's website for information and survivor stories. It was actually terrifying and I could only do it in little bits because I would panic and cry. I was in actual denial that this had even happened to me and despite everyone telling me the story over and over again, it's really terrifying to admit that this has happened to you. Honestly I don't know if there is anything more terrifying to be told this is wrong with you and we don't know why. Cancers and other illnesses you can blame on environmental or genetic causes but AFE is kind of in the wind. Nobody knows and it makes me worry that I am susceptible to something else that I just don't know about. Is something more coming for me? Was this the Pandora Box of other things? It's a scary place to be in.

But being two years out I'm getting better at absorbing information and not feeling like doomsday is coming for me. It's still painful to hear, sometimes I cry, sometimes I need to take a break from it, and sometimes I grieve my story all over again.

But I'm trying.

I'm writing my book and that requires me to research and learn, which is harder to do now and my brain doesn't process information like it once could, so sometimes I don't understand what it is I'm reading. But I stumbled across a podcast, literally the only one out in Podcast Land that I could find, on AFE. I thought maybe I'd share it with you in case you were interested in hearing about AFE from someone other than me. They are relatively short (like 20 minutes) and I listed to them on a recent walk.

Episode 019: Amniotic Fluid Embolism, a case discussion

Episode 020: Amniotic Fluid Embolism, pathophysiology

After listening to these I had to find the doctor speaking in these, Nolan McDonnell, and just tell him that I'm survivor, I listened, and I thank him for his work. He's doing big things with AFE research and expansion of a registry in Australia and my hope is one day the United States will have a similar medical system like Australia and the U.K. so we too can have something like this.

My next topic is looking for resources and information on birth trauma related depression and birth trauma related PTSD, both of which aren't overwhelmingly plentiful so it should be interesting. Do you know of a resource? Drop it in the comments and I'll check it out!

When the wheels fall off.

I haven't done a health update in awhile and that's not because it's been quiet, but because I've been lazy. So let's recap my health status as we approach the two year anniversary of the AFE.

Auto Immune Stuff: So I've been seeing a Rheumatologist for awhile and we steadily do labs and right now my daily pain is being managed with a once a week dose of Methotrexate, which is really a common thing with people in this group. It works fine enough, I'm not pain free but I'm realistic enough to realize that's probably not an attainable goal. Instead I'm learning to move slower, I don't push myself like I want to because I'll be immobile the next day and I can't manage that. Curiously, one of the things they check regularly is my inflammation in my body, it gives them an idea of where I'm at with my dose of medicine. I continue to be high and they are stumped on what to do with me. That's always a fun thing.

Stomach Pain: I think I mentioned that I was going to have an endoscopy but I don't know if I reported back about that. The procedure itself was fine, I guess. It was the waiting before that was horrific. I ended up waiting 37 minutes in the procedure room, totally ready to go because they were running behind. I just laid there and cried because I felt panicky and I kept having flashbacks from my emergency c-section. Except I can't possibly know if it was a true flashback because I can't remember anything but I just kept seeing a slide show of images in my head that were like ceiling tiles, equipment, something being put on my face/nose, stuff like that. The nurse and anesthesiology tech in there kept asking if I was OK and all I could do was shake my head no and told them I was just really scared. Afterwards I was really nauseous and weepy but I think it was an adrenaline crash combined with not taking any of my mental health medication before. I took just the stuff I need to keep me from crashing because I didn't understand any of the paperwork they sent me.

Anyways. So the procedure showed that I likely have a hiatal hernia, GERD, Barrett's esophagus and a stomach polyp. Thankfully the polyp was benign so that's just going to hang out there. Barrett's esophagus is a "change in the lining of the esophagus due to chronic acid reflux". Which is nuts because I don't have heartburn. Except when I'm pregnant. So.. go figure. I was put on an over the counter med for that and I need to do the EGD annually (which is just fantastic) because there is a chance the Barrett's esophagus can progress to esophageal cancer. So we're watching my esophagus but also my liver because I've got a lesion there and that could turn cancerous. Are we sensing a theme? Who wants to bet I die from some weird cancer?! From my limited Google searching, cancers in your gut/abdominal area are sometimes hard to find, often found late, and are really awful to die from. So that's super exciting.

And to boot, that stupid medication isn't working because my stomach hurts every day still. Bright side? I'm hardly eating so hopefully I start losing weight!

Mental Health: Sigh, so I saw my psychiatrist again because the last two medications that are supposed to level me out gave me tremors that rivaled Parkinson's disease. That's not really awesome so I stopped taking them. Instead I'm stitched to Trileptal which is alright so far. I don't really feel any different except I haven't raged and almost broken a door so I guess that's a plus. I got back later this fall to report back on this med. I really hope this one works because I'm just so damn weary of it all.

Overall: I continue to be sick of doctors. Thankfully I haven't had as many appointments as of late so that's been really nice. This entire journey just reaffirms that we need to continue advocating and supporting the research of Amniotic Fluid Embolism. I absolutely believe that my AFE was the catalyst for all of this. I was 100% healthy, with no issues, before my AFE and suddenly I have a massive list of problems. It's just absurd. If you want to help the cause, learn more about AFE and donate HERE. Seriously, even a $1 helps. The Foundation is doing some really great things and they are financing the research being done, so every dollar goes to the cause. I hate to think another mom will go down this road, I refuse to believe it's a freak occurrence.

In 5 Weeks

I was trying to work on this post, and then I quit it, but now I feel like it's still accurate and it's my blog so I should share it.

In 5 weeks...
... Lucy will be two. It's hard to believe it will be two years since the most traumatic event in my whole life. Probably the worst thing that will ever happen to me if there's any justice in the world.

Last year at this time I was having major anxiety about her turning one and that turned out to be just because I was incredibly anxious and depressed leading up to the event, and my depression last fall was some of the worst I had experienced. Last fall I stopped my car on a bridge and it was everything in me to not get out of the car. Last fall I sat on a cliff and wondered why I'm still here and desperately praying to go.

I feel much the same this year. I don't understand the purpose of me still being here and at the same time I'm too tired to care. I'm going through the motions of my every day.

But I'm not happy.

I'm not fulfilled.

I still feel like I'd step in front of a bus should the opportunity arise.

Am I always going to feel this way? Is this really the best there is for me in terms of emotions and well being?

This year has been another series of doctor appointments, lab work, procedures, and we are no closer to finding out why I feel the way I do. I still can't be around pregnant people for long without crying and having anxiety. I struggle with word usage, word spelling, and things I thought I was really good at. I can't do math very well, I could never be in charge of a cash register again. Simple processes are hard for me. I get confused when you give me directions or try to tell me a story. Every day I say that I hate my life and I wish I was dead. I'm developing a fear of needles. I still don't drive with the toddlers, mostly because I'm afraid I'll forget them but also because I can't handle them. I hate being a mom, it brings me no joy anymore. I want to lay in bed every day all day. I miss being adventurous. I miss being a good friend. I'm not a very good friend right now and people are forgetting me. People are forgetting that I'm still impaired, everyone else has moved on but I'm still stuck here. I'm happy I've got my reading speed back up, but I realize that remembering a story is gone. The bright side is that re-reading my books has been nice, it's always a new story even if I've read it countless times.

I'll say my relationship with Matt, oddly, has never been better. Who knew a crisis would be a saving grace to a marriage? I certainly wouldn't have thought so.

I feel like I don't contribute to the house. I feel shame being on disability. I feel like the world is passing me by. I'm scared about my future. I feel guilty that Penelope and Lucy will never know the mom I used to be. They'll never have the best of me, they'll never know it. Olivia and Jackson will always miss the mom they had and continually disappointed in the one they have now.

It's been a rough two years. Then I realize it's only been two years and I sigh because I feel like it's been a lifetime of this. How many more years will I struggle through like this? I can't fathom it.

It's been one of those days. Or week. Whatever.

I hate the unpredictability of depression. I wish I could predict when I'd be having some bad days and when I'd have some good ones, maybe then I'd feel more productive in life. But none of that happens and I find myself in days and weeks where I just can't care. Here's some of what I'm too tired to care about:

• I'm waiting for my MRI results of my abdomen. I haven't written about it because I don't want to put the possibilities out into the world until I know what I'm actually dealing with. I'm hoping it's minor and stupid but it could be the opposite of that so I wait. I'm assuming that because it's been almost a week since my MRI that it can't be that bad otherwise they would have called right away. Right? 
• I am 75% sure that Penelope is going to Head Start/preschool in the fall. Old Sara would feel like a terrible mother for being almost gleeful at sending a child away during the day, and she cried when the big kids went to 4 year old kindergarten for half days. I felt terrible at that but this... I'm nothing if not honest and Penelope is a LOT. She's just a whole lot to handle even on her best days and I'm desperately hoping that preschool will tame the beast, so to speak. I don't know if it's half or full days, I know next to nothing about it other than we qualify and it's just paperwork stuff now. 
• I'm really tired of feeding my family. Their need to eat meals every day is exhausting me. I'm sick of planning the meals, shopping for the meals, cooking the meals, and cleaning up after the meals. I do all of this for everyone to complain about the meals and I just... I can't care anymore. In fact I don't actually care but I'm going through the motions and I eat nothing. 
• I can measure my depression in the amount of books I read. When I'm doing well I can fly through books easily but when I'm not I struggle to sit still for any length of time to read. I'm currently in the beginning of two books but I just can't get any further it seems. I hate it. 
• I am losing patience with people who try to relate their depression to mine. I just want to say they have no idea and need to shut the hell up but I don't because I also don't have the energy to fight back. 
• I had a nice Mother's Day. Matt got me a wallet to match the fancy purse I bought in a mental health breakdown and I couldn't return and a cookbook. Probably because I was bitching about the meal situation mentioned above. We went out for lunch, we grilled for dinner, and meh. It was fine. 
• The weather is killing me. One day it's blistering hot and the next it's so cold I wish I owned a jacket that fit me. 
• I've become paranoid to fill out forms and documents, I'm certain I'm going to miss something or get information really wrong and not catch it or realize it. It's debilitating. I'm constantly certain I've done something wrong, forgotten something, screwed something up beyond fixing, and it's really an awful feeling. 

So those are just a few things rattling around in my head. There are more but I won't put them out there and depress you, too. 

Restlessness.

One of the symptoms of depression and anxiety that I experience the most is restlessness. I feel fidgety, I have a hard time sitting down. But I don't know what to do so I am often found wandering around my house looking for something to do. Or eat.

Except I don't really want to do anything and I'm not hungry.

I do something and eat at the same time.

I'm exhausted and I hurt so exercise isn't a go to. I try to reserve that for when I'm so angry I feel violent, I use it to burn my energy.

So I start something and quickly grow bored. Then I sit at my computer and waste time on Facebook. Or here. Like now. But then I don't feel productive so I get up and go back to what I had started, often a book or a scrapbook page, and I make a real effort to pay attention, stay focused, just do this thing.

Except that I can't.

So I wander some more.

Every day of my life is this way and I'm not sure how to fix it. I want to be content doing nothing, but content doing something, too.

I am so frustrated.

Breathe in.... hold it!

I forgot to tell you about how my visit with the Pulmonologist went this past week. Remember when I told you I had to take a Pulmonary Function Test (PFT)? Well it turns out my test was "abnormal".

So abnormal that I get to do it again!

We didn't get into the nitty gritty of it but one of the first numbers in the control test was 300, pretty alright. The second time you do the test is with the help of an inhaler basically so the number should never be less than the first test.

Mine was 116.

He's sure that that means the test wasn't done correctly; therefore, he is reluctant to give me any kind of assistance not knowing what my true numbers are. But since I have symptoms of some kind asthma (like when I exercise my chest hurts, I have a wet cough, and I can't take a deep enough breath) he gave me Albuterol for my inhaler. I'm probably butchering the spelling of that, but that's what I've got. The two times I've used it since I have noticed a marked difference in how I felt and breathed so I don't know, maybe this is something I need in my life.

The good news is my insurance covered the entire cost of it so that was pretty nice.

I go for my second PFT and follow up right after it in March so it'll be interesting to see what comes of that.

Also this last week I went to Rheumatology again and my blood work continues to confuse everyone. Symptom wise, I have tenderness in joints and I display a lot of the things on the Rheumatoid Arthritis checklist except my blood work and (so far) I haven't had an inflammation. I'm continuing my Methotrexate for all of that so maybe that's why, but I'm starting to feel moderately better. I still feel like I have the flu all of the time but it isn't as severe as it was this time last year, so I feel like we're moving in the right direction anyways.

I'm heading into my 36th birthday in a few weeks and it's so strange to think I am going into it with a litany of health issues. Never would I have expected to be dealing with all of this at this point, maybe in my 50's or something, but not now. I definitely feel older than 36. Much older.

Sometimes when you think you're helpful, you're being lazy.

I'll start this by saying that my feelings about this are no way indicative of every person who is or has been in my position. I'll also put out there that I used to do all of these things, be that person, but I genuinely thought I was doing good.

I used to be one of those people who heard about suicide and immediately thought, "That is incredibly selfish. You're surrounded by people who want to help you and you don't even care enough to let them help." I was that person, no question. Full stop.

Then I became suicidal and I realize what an asshole I was. I wasn't helping by pointing any of this out, but what I was doing was trying to guilt the person into staying here. Guilt is not a reason to stay on Earth. Nobody should stay here because of what they can do for you, whether that's supporting you or just being the person under a title in your life (mother, father, friend, spouse, etc), or because you have fond memories and you like that person: that is not a good enough reason for them to stay alive because what that is is YOU being selfish. You're thinking about what you would be feeling with them gone instead of what it feels like for them to be alive every single day.

Sure, some depression is passing. We all have days where we think, "fuck it all, I'm done" and we have them in varying degrees. Some of us say it, don't mean it, and that's that. Some say it and maybe think about it in passing but it's enough to convince them it's just a bad day. Some people think about it hard, really weigh it out, but ultimately it passes and they are able to move on and be OK. Then there are some people where it is like a continuous loop of negative in our head. It's a cassette tape that never ends, it's on repeat, and you never shut it off. At best you can turn the volume down a bit but out of nowhere it gets cranked up and you suddenly feel like you have no control over it. If you hear something enough times, you agree with it. It's making valid point and it starts sounding like a better idea every day.

One of the resources available to all of us are suicide hotlines. I have called it one time in the last year and it was the worst 12 minutes of my life. I got a young sounding guy, sounded like a young boy, and he was reading of a terribly written script and when I detailed why I felt the way I do, he gave me silence. He had no answers for me, didn't have any information about where I should go for help, and I hung up that phone feeling worse than ever. I don't remember how I got through that night but it was hard. While I laid in my bed, with tears streaming down my face and my husband asleep next to me, I remember countless friends telling me to "reach out" if I need help.

So I did.

I made a lot of phone calls. Maybe because it was the middle of the night, but I got no answers. No returned texts. Nobody even returned the missed call they had to have seen on their phones. I can't fault them because we're all busy with our lives and I get it. I hate talking on the phone, so I understand about anxiety. I also know that nobody wants to be the last person someone talks to, it's a lot of pressure. What if they kill themselves, is it because of something you said? Did you motivate them to jump off the bridge?

I get it.

I could go on and on, but I won't. I will say this though, if you know someone who needs help, who is maybe on the fringe, do something. If they matter to you, do something. Call around and find the mental health resources in the area, sit with them, bring them food and hugs, let them cry no matter how uncomfortable it makes you, listen to them, don't tell them to be grateful or think of everyone who has it worse because in those moments? This is worse than cancer. It's worse than babies with cancer. I'm not kidding. In those dark moments the tape is so loud and it says every negative thing. It overpowers everything good in your life and you just want it to stop. If ending your life makes it stop, it is worth it, in those moments.

I won't pretend to tell you I've beaten it because I very much haven't. While my medications quiet the noise, I still hear it. The medication numbs my ability to plan but I still want to die each and every day. The medication slows me down and makes me tired, and I don't think I'd have the energy to do anything even if I had a solid plan. I'm also not begrudging anyone around me. I think you all genuinely think you've done everything you could or are comfortable doing. I get it. I'm with you, I don't know what I would do if the tables were turned. But I ask you, I beg you, please don't tell me to call a hotline, to reach out, to be grateful, to look at all of the good around me, because none of it helps and none of it matters. Give me an actual solution.

The end of the worst year of my life.

I know I said last year was the worst year of my life, but that's not true. If anything it really was the best year. Sure, I died and that's not ideal, but I saw the kindness of so many people, people who knew me and even more who didn't and it's hard to not be buoyed by that. My family was completed with Lucy's birth. So many good things happened in 2016 that I can't call it my worst year.

2017 grabbed that title easily. Here's why:

• I started the year off with my first suicide attempt. It wasn't real serious, it was more of a trial run with messing with medications just to see what would happen. I ended up in the ER and back home in a few hours, but I felt awful for weeks. 
• I thought 2016 was my rock bottom with depression and that wasn't true. 2017 wanted me to hold it's beer and show me how it's really done. I have never in my life gone through the harrowing moments I did this year. I suffer mostly in silence because I'm scared what people will think when I tell them what's going through my head. Instead, I mostly cry in the shower as every horrible thought goes through my head like a movie reel I can't stop. 
• I tried so many medications to improve my mental health and I finally understand when people say the side effects are almost worst than the illness itself. I have dealt with bugs crawling on me, electronic shocks all over my body, numbness in all of my limbs, shooting pain down my limbs, the worst migraines of my life, stomach pains that rivaled labor contractions, and uncontrollable thoughts. 
• In the spring I stood at Enger Tower and stood with my arms outstretched on the edge of the cliff. I just felt the wind going through my fingers and voice telling me to do it. It was the most liberating, and most terrifying, feeling I have ever felt in my life. 
• I realized just how disabled I am. Sure, there are lots of things I can still do, but a lot of the things that made me like myself are things I can no longer do. I am learning that I never learned to love myself for myself and if I'm not doing something perfectly, it's OK. If I'm not the best, the quietest, the most organized, the over achiever, it's OK. It doesn't feel OK. I'm just a regular nobody if I'm not over achieving. 
• I had more panic attacks than I want to admit. More outbursts that scared my children and Matt. I learned that PTSD isn't a joke and it doesn't care how much therapy you do, it will always find you. I have spent more days crying in my dark closet than I have doing something I enjoy. I don't enjoy anything anymore.
• In November it was everything I could do to not pull over on the Blatnik Bridge and get out. I felt like I actually had no control over it. The only thing keeping me here is guilt and I'm sick of feeling guilty about everything. I just want peace. 
• I have sat in parking garages of the hospital and sobbed because I'm sick of being diagnosed with another thing. I'm sick of feeling like every ache or pain is a larger ailment, that I'm falling apart and I have no control over it. I am sick of people looking at me and feeling sorry for me. I'm sick of people assuming I'm fine because I "look good" when inside I'm constantly looking for a way out of life. 

With all of that, it's not hard to think that 2018 has to be better. Just statistically, a single person can't have continuous awfulness, right? I mean, it has to surely end sometime. So let's talk about my goals for 2018. I no longer have resolutions, I'm giving myself goals. 

• Lose 5 pounds. Seems easy and lame but it's going to be everything in me to lose that given all of my health issues and restrictions. I'm going to try though. 
• Do a boudoir shoot. I feel like I'm at the most disgusting physical state that I have ever been in and every time I look in the mirror I cry at how wrecked my body is, it's been to actual hell and back and I hate every inch of it. Seems logical to do this photo shoot, right? I figure maybe someday I can do another one and it'll be an improvement. 
• Do a regression therapy session. I feel like I really need to go back to my trauma and see it happen. I am hopeful, I am terrified, I am every range of emotion. I worry that my emotional state will be worse afterwards but honestly, what do I have to lose at this point? 
• Do one fun mini trip with my kids and Matt. Last year we did Florida and that's not happening this year, but I'd like to do something with them. 
• Find a medication cocktail that actually works and that I can afford. 
• Go to a concert. I have two on deck for next year, but I'd like to find two more. 
• Read 105 books. 
• Plan a 15th anniversary trip with Matt for 2019. Just us, no kids. 
• Finish my book. I am half way through it and I'm finding I need to take large breaks between writing sessions because I am an emotional mess. 
• Do a random act of kindness every month. One of things that used to give me joy is spreading kindness, doing something nice just because for someone. I've started on that this month already but I am running on the theory that if I do it more, it'll bring more joy. We'll see. 

I hope 2018 is kinder to you as well. I know we all have problems. People are out there dying and they don't want to, and I'm over here wishing I was dead. I understand the absurdity of that. It is what it is. These are the cards I was given, I'm shuffling them and dealing them out as many different ways as I can and I'm trying. Nobody can say I'm not trying. God speed, lambs. 

Reliving trauma.

One of the things I had never understood with PTSD victims is when they would discuss "reliving trauma" and how small things can be big triggers. I didn't fully understand what a trigger is or why it's a big deal.

Until now.

I totally get it. For the last year that I've been in therapy I have been told that eventually I'll learn what my triggers are, but that doesn't mean I won't add to that list, and some things might end up being OK in time. It all seemed really vague and I don't really do well with vague. Give me a concrete answer, a list of tasks to complete, that I can work with. Maybe that's been my problem this entire time- I know that I'll never be the me I was before Lucy, that ship has sailed without me on it, so what am I working towards? How will I know I have gone as far as I'm going to? Where is the finish line?

Nobody knows.

It's frustrating and I get so angry when I try to give myself some end goals, things I want to work towards. I spent my whole life perfecting myself and getting to a point where I was happy. Remember when I went through my weight loss and running phase? That was always something I was going to do again, after I was done with babies. I was looking forward to it, oddly enough. I can't do that now because I have serious issues to contend with now that I make no cortisol, I can't take enough synthetic in fast enough to compensate the stress that running would do. So what do I do in place of it? Remember when I was doing more for myself in terms of self care? I was going to concerts, going on trips with friends, taking the kids on adventures... a lot of that is gone too. Well, I can do them but I can't do them alone. The days of me driving to Chicago on a whim? All night road trip? That's all gone. It's hard because a lot of the things that brought my joy are no longer reasonable options for me. I have to find new things that bring me joy.

You know what's strange? You know how in the book Me Before You where the character wants to die because he's paralyzed and only thinks of the things he can't do and doesn't want to find new things? He knows that the new things, while they might be OK, they aren't like the old things he loved and he won't get the rush from them like he used to- and that's what he misses. Not the activity itself but the way it made him feel? So he arranges his suicide and that's the story. That's how I feel. I'm not at arranged suicide level but I finally understand his point of view. I could never imagine how a person feels when they get to the point of wanting to be done. I used to always think it was such a selfish act but now that I'm in it, I'm swimming in those waters, I finally understand that it has nothing to do with anyone else. It's really a battle against our own brains. Sure, we can "reach out for help" but for what? So people can tell us all the reasons why we're great and that they'd miss us? What if that isn't enough to keep us here? Do you think that we don't know all of this? Forgive me if I don't reach out to be lectured. The voice inside of my head is loud enough, I don't need it on the outside too.

My psychiatrist said an interesting thing at my recent appointment, "if you wanted to be dead, you would have already done it" - is that true? Is that really the litmus test for that? I'm not sure. I've thought about it a lot and I don't know that I agree. I think I've thought so much about it, I'm very much that person who wants to be sure. So I keep going to doctors, I keep trying to find solutions and fixes, ways to cope with all of this, because I really just want them to say, "We've done everything that we can, this is really it" and then I'd be done. I'm starting to suspect they all know that and are purposely telling me we have lots of things yet to try.

At my last therapy appointment I was challenged to write Lucy's birth story, involving not just the narrative I've been given, but incorporating much more detail. Think about the event from all angles and maybe I'd remember something. Anything. How do I think I was feeling being rolled into a c-section I didn't want? Do I remember a smell? Lights? What was it like holding Lucy? Was I scared to not remember? What did the nurses think? Did I say anything to them? How long was I really dead? What is every single medical event on the timeline?

All of this feels really challenging. A rational part of me says that my memory blocks things out for a reason, that maybe I shouldn't press into this, that maybe I'm not emotionally able to handle it. Then I feel defiant because I'll be damned if someone tells me what to do. So I've reached out to all of the medical personnel that I can think of. I know they have gone over this with me a hundred times but I can't help it, I have to hear it again.

In the meantime, I'm going through the records I requested from the hospital again and man... it's traumatic. I have read these maybe 15 times, nothing in this is new to me but every time I read it I feel panic rising in my chest and I don't know if I'm remembering the fear of the event again, but it is scary.

Another thing I'm going to reluctantly try? Regression therapy. I heard about it in Steph Arnold's book 37 Seconds, she really had a hard time connecting with her AFE event because she couldn't see it happening. Which is exactly how I feel. As traumatic as it would have been, I wish I had more pictures, or video, to look at so I can wrap my head around it. The few that I do have don't even look or feel like me. It feels like I'm looking at someone else. It's strange. I've reached out to someone near me that thinks he can do it and I'm scared. I feel like I need to do it but I'm scared.

It shouldn't be this hard.

I have made it no secret that Lucy was very much an oopsie baby. We were taking precautions and none of it actually mattered because my uterus hates me. Maybe she just likes to be busy, I don't know. Lucy is 100% our last baby, that is the plan. Matt has had his vasectomy and they are 75% sure I can't get pregnant if I wanted to because of the tremendous blood loss to my ovaries and also not having any hormones, those are important things. But that means there was the 25% maybe and if Lucy could slip through that teeny tiny window, god knows triplets or something would make it in that 25%. So Matt had the vasectomy because we wanted to make DAMN SURE a fifth baby cannot happen.

So no more babies. We knew that. I know that. I do. I can't remember anything from yesterday but I vividly remember agreeing to no more babies. Done. No more.

Which makes my recent feelings about that really bizarre to me. I remember being sad when we got rid of all of the baby things after Jackson, I definitely did not feel done after him. This time, I feel done. I do. I think. I mean, I guess I don't remember if what I feel now is different back then, but it's really tough.

In the back of my head I had this wiggly, random angry feeling about being done. It's one thing to be done on your own terms, but being told I am done from a medical standpoint? That bothers me. It feels like a parent telling a kid no and they've got that look in their eye when you know they are going to do it anyways. It's just like that. Part of me wants to get pregnant and be like, "SCREW YOU, I can totally get pregnant!" and the other part of me is so damn relieved I don't have to do it again. I never have to deal with the fear of delivery and wondering what if.

Then there are days like today, where I'm trying to clean and organize, and it's not going well. I was getting angry with myself because I don't have the ability to do things like I once could, and I decide that now is the time to clean the cupboard with toddler dishes.

So I lined all of the bottles up and the mesh feeder and I started crying. Crying so hard I almost couldn't breathe. It felt like the biggest punch to my gut, a visual realization that this is really it. Then when I realized that I don't remember any of Lucy's firsts, or what it was like to snuggle her newborn self, the sound of her first laugh, her perfect baby smell, how soft her first hair was, or what she felt like on my chest? I can't remember what it was like to feel her kick in my stomach, or rub my belly, the excitement of labor and knowing she was coming. I cried like someone had died. On my kitchen floor. Alone. I cried and I cried.

I am so angry that all of those moments, especially profound since she is my last, are gone. They have been stolen from me and I can't ever get them back. Worse yet? I have no memory of any of my kids. The only "memories" I have are like actual snapshots in my head. Like the pictures in their baby books is what I have and I know it must have happened because I'm in the photos. I don't have that with Lucy. I don't know what it was like to hold her for the first time, and I imagine I must have felt a lot of things considering I had died.

Matt said he was told that one of the medications they had given me at some point would basically make me not remember the event and subsequent pain, but they didn't know if I'd have any other memory loss- it's kind of a toss up. And in hindsight, know how much is gone, I would give anything to have it all back. I would have taken the horrific pain for these memories. But I know in the split seconds they had, the medical team thought this was best. I can't fault them for that,  I would have made the same call if someone asked me to make that kind of decision for someone else.

I imagine this is what it maybe feels like to have dementia or the beginning of Alzheimer's, there are lots of things you don't remember and you don't remember what you don't remember. If you ask me a direct question, I probably can't answer it, but if I'm not trying to remember, some times it just pops through my head. Like in the dark, until your eyes adjust your peripheral vision is better than looking straight ahead- that's how my brain is. I know the information is there but if I try to remember in a really roundabout way, I can do it. Ask me to recall information right away? Nope.

So that's where I'm at. I am slowly ridding the house of baby things and it's killing me. The crib will likely come out this weekend and I know I am going to be a mess. I know it. I'm scared. I feel like there isn't ever going to be a good time to do it and maybe I need to just rip it off like a bandage. All of my doctors and therapist tell me it's normal to be angry and sad. To have unexpected triggers and it's OK to cry. I don't have to apologize for it, I just need to get myself to the next moment. It all passes, even the moments when it hurts so bad it feels like a tangible pain. I would never wish this on anyone. Never, ever.

Finally!! Some good news. And cream.

So you may remember back in September I went to Rheumatology for the first time and I felt like this doctor was nice but clearly thought I was crazy. She did a bunch of blood work which showed I'm fully out of whack and nothing makes sense.

No shocker there.

The most alarming thing was finding out that I might have antiphospholipid syndrome, which is a clotting disorder that's rare but dangerous. I checked off two of the three boxes, "significant event" (my AFE) and then a wonky blood test. The procedure is to wait approximately 12 weeks and test again, if you get two positives- ding ding ding- you are a clotting disaster waiting to happen. I have been on EDGE the last 12 weeks because that kind of thing is scary. On the other hand, I was kind of hoping I did have that because then I could maybe have a reason for my AFE and I wouldn't feel like I was a ticking time bomb. I've said this entire year that I'm not scared of a diagnosis, I'd rather know what is (good, bad, or ugly) because if I have a defined problem, I can fix it... or at least cope with it. The fear is walking around thinking I've got some other problem we don't know about, just waiting for another perfect storm to take me out like my AFE.

And maybe that doesn't seem rational or make any kind of sense to you, but it does to me.

This week I went back to rheumatology for a follow up and talk about my next step in regards to the Plaquenil that I'm apparently allergic to. I got a totally different feel from my doctor this time and I feel like she doesn't think I'm nuts, and that like all of my other doctors, she's intrigued by me because I'm a puzzle. I'm rare, I'm complicated, and nothing conventional really works because I have enough wrong with me that it changes things.

I'm a guinea pig everyone loves, basically. The class pet everyone is fighting over.

We do my exam, she orders a bunch of lab work, and decides my next stop is going to be Methotrexate and a Folic Acid supplement. I've heard a mixed bag of experiences with this so I'm worried, but I also want to feel better so that's winning over right now. I agree to give it a whirl and head over to the lab.

The lab is a nightmare. It's busy but my experience is that they move pretty quick so I wasn't worried. An hour into my wait I was starting to get worried. They finally call me back and I'm told they've got a student and am I OK with that? Oh sure. I'm fully supportive of students getting hands on experience so I can't remember ever turning them down. So as I'm sitting down I saw all of these vials on her counter and I said, "Wow- I'm glad I'm not that person!" and she looks confused, asks me to confirm my last name and date of birth and then says, "Oh these are for you! It won't be too bad."

Guys? It was 15 vials. FIFTEEN. My previous most was 12 I think, but 15? Good GOD.

Approximately six vials in she informs me that my vein has decided to stop all together. Nothing was working and after calling over the actual lab person for help, that person decided to just do my other arm because she didn't insert it correctly. Super. So she gets the other nine vials with no problem and did it really fast. I felt bad because it was almost 4 when I was leaving and there was still a room full of people waiting to be helped. Yikes.

But fast forward to my results!! You guys? I do NOT HAVE antiphospholipid syndrome! Woo Hoo!! I'm so excited to not have a "thing", you can't even imagine! On the other hand I'm a little disappointed I don't have to thing to point to and say, "maybe this is why I had an AFE!", but it's OK. That means I don't need more medication, and I can always get on board for that. Relief.

Oh but all good news has to be countered, right? So at my physical this month I spent a lot of time talking with my doctor about Mayo Clinic's suggestion for my estrogen replacement. They recommend I use an estrogen patch, progesterone supplement (to help maybe minimize the cancer risk of the patch), and then an estrogen cream because it's an added boost for your vagina and all of that.

She agrees I need to be on something and that this would be the route to go if I want to minimize migraines and daily headaches (I do), but there aren't a lot of studies that look at the long term effect of using such estrogen replacements at this age (35). Most studies focus on women in their 50's and beyond and it's "pretty safe". I'm taking a risk going this route at age 35, but the consequences of not replacing estrogen are pretty concrete and serious. So I decided I would do the replacements, hope for the best and never miss or put off a cancer screening, monitor my side effects carefully, and hope for the best.

Gulp.

Naturally, I had Matt pick up my prescriptions and I knew that the estrogen patches were going to be expensive. Those are around $82. My progesterone was around $60 (and that's SUPER important for me to take with all of this, absolutely NO missed doses) and I was surprised by that cost.

But the vagina cream? It's a tube of cream, you guys. It's not anything fancy.

$418!!! Can you even believe this?! It's like a tube of toothpaste and I need one gram twice a week. But this tube is $418!!!!! I can't even wrap my head around this.

I know what you're saying- "Sara, that's the retail price, what is it with insurance??". You guys, I pay 100% of my prescriptions until I hit my deductible, which is $4500 for me alone. So right now my monthly fee for prescriptions has exceeded $900 and that's assuming I don't refill everything. (Some stuff I don't use all of it in a month like my nausea pills and my migraine medicine, and the stuff I take to be alert and awake.) I will be paying almost more than my MORTGAGE for medications.

The hilarious part about all of this is that I used to laugh so hard at those commercials about dry and delicate vaginas because of menopause. Don't laugh, lambs. Dry and delicate vaginas are really horrible and you don't want to deal. Imagine a hundred tiny paper cuts in your vagina. It's like that. Brutal. This cream better make it like brand new for this price. Dang.

I guess the plus side is that now I have every hormone replacement taken care of. It's taken a year and it's not perfect, but it's something.