Weight Loss Monday: Walking with maybe predators. And the sun is trying to kill me.

I feel like I'm finally getting my groove back. Matt said I used to be super crabby if I didn't get my nightly walk in every night years ago when I was in my weight loss kick. I'm starting to get that feeling now but I am also really very tired so it's been a struggle to go.

Last week though I walked Monday, Wednesday, Friday, and Saturday. The goal this week is to go every day. I'm not kidding. I am finding that walking in the morning pushing a stroller is really tough and it makes one mile feel like I'm walking to my death. In the evening, after dinner, I've been walking a mile and getting the itch that I could go further so I'm going to try. Two miles with the stroller is an absolute no-go because Penelope and Lucy are heavy. It's almost pushing 60-70 pounds and I know that's nothing to most people but for me? It's something.

I also discovered after really looking back at my notes and putting information together on my OWN that I think I have heat intolerance. Which, I know it sounds like I'm one of those crazy people using Dr. Google and diagnosing themselves but that's not the case at all. The last three summers have been kind of awful and full of days where I'm sick (vomiting, diarrhea, migraines, fatigue, and flu like symptoms) but they are sporadic and I didn't think there was any kind of pattern.

Oh but there is!

They always happen the day AFTER I've been outside for awhile on a moderately warm day. Just this summer alone I've had a few of these events (and they are the worst, no joke) and they have all started while I'm outside. I'll start with a headache, then I have to run to the bathroom, then I feel like I'm going to throw up everything I've ever eaten in my life, then I get unbelievable fatigue (it feels like I'm going to pass out because I am that tired) and I start to hurt all over. It'll last for an entire day, sometimes two. Nothing helps other than a ton of ice water and sleep.

I sent a message to my rheumatologist and my endocrinologist and I got varying information. Rheumatology didn't seem to care even when I point blank asked if it's possible I have lupus. I guess I'll have to bring it up at my next appointment again and see. Endocrinology was a little more forthcoming with information and while he didn't seem concerned or surprised, he did let me know that where I have brain damage and pituitary damage is where your body regulates your body temperature. So when you get warm your body tries to regulate it, same as when you get cold. Apparently I cannot do that so I'm at a significantly greater risk for heat stroke, so that's really fun. The only solution he has for me is to wear a hat, always be under shade, where loose fitting, breathable clothing, drink obscene amounts of water, and do whatever I can to not be hot.

I also realized on July 3 when I was sitting, in the shade, in the yard watching kids play and chatting with Olivia and her friend, I had drank 150 ounces of water that morning between 7-11 a.m.

And I didn't pee. Not once. Didn't even feel like I had to.

In fact, I drank more and more water all day.

I peed before I went to bed for the first time that day at 10 pm.

So clearly, something isn't normal.

**
Next up is my walks. I do the same loop every walk because it's easy to know when to turn around and it's easy for me to find my way home in case I get confused or disoriented.

On Saturday though, as I was almost to my turn around spot, a man was walking toward me and I didn't think anything about it. As he walked past me I just..... I got that feeling. You know when your gut is telling you something isn't right? You get that urge to run and look for help? That's what I got.

I turned at my normal spot and he kept walking the direction I had just come from. As I got around the block I just have an uncomfortable feeling and I actually feel unsafe. Something about this doesn't feel right and I'm not sure what to do. So I keep walking. I realize he's matching my pace but we're walking on parallel street. I slow WAY down mid block to let him get ahead of me. After was more than enough time for him to get ahead, I start going only to realize he stopped and was waiting for me.

I actually felt like I was being stalked. I'm not kidding.

I realize I'm maybe three blocks from my house now so I decided I'm going to risk injury and start jogging to get ahead of him. I'm clipping along at a decent pace and I just... I have a really uneasy feeling. By the time I got to my house (I live on a corner) I realize I have screwed up because now this guy knows where I live. He must have heard or seen Matt, who was working in the garage but had his saw pulled out into the drive, because he basically started booking it. I tell Matt what happened and he doesn't seem concerned, but I didn't see the guy again.

Not going to lie, I didn't walk yesterday because I'm mildly afraid I'm going to run into this guy again.

But it made me wonder, has a man ever felt that way? Like he's being stalked and followed, and been scared about it? I can imagine it isn't as frequently as women have. My entire walk home I kept running scenarios in my head, like what are my options? I can maybe run through some yards, maybe start banging on doors. I had my phone and I could have called for help but what if he grabs me and I drop my phone? How would they know where I was dragged off to? If I started screaming would anyone be home and willing to come out and help me?

My priority this week is to seriously get pepper spray or something to take with me. Even if I never need it, maybe just having an option would make me feel better. I don't know.

Health Update: Rexulti, Eyeballs, Guts

I continue to struggle managing my depression and anger. I will say that a lot of days I can get through just fine, no angry outbursts, no rage feelings, but when it comes? 

It COMES. 

I have to assume I'm terrifying to my small children because I scare myself. 

At my recent psychiatry appointment, where we are tweaking my meds so I don't jump off of the bridge, we decided that we would stop the Abilify and in its place start Rexulti. I'm pretty much game for anything at this point, so I was fully on board. I only made it three days on Rexulti when I discovered it was giving me tremors in my hands, arms, and head. 

If you've never had tremors, consider yourself lucky because it's really disconcerting. It's like having Parkinson's, just uncontrollable shaking. 

Guess what you shouldn't do with that? 

Shave. 

Let's just say I lost quite a bit of blood over the weekend just trying to shave my damn legs. 

I sent my doctor a message that I was going to stop the Rexulti and asked if I should restart the Abilify or just wait? Luckily for me I was able to get a sample pack of Rexulti so I wouldn't be left with an entire bottle of something I can't use, a practice more doctors should do because honestly- I've spent hundreds of dollars and have a vast quantity of pills that I can't use. 

I really wanted to ask if I'm going to be dependent on these forever. Will I forever need medication to participate like a normal person in society? Will my depression always be here? I think I asked once before but I want so badly to ask again... I just don't because I'm kind of afraid of the answer.

I also got my annual eye exam, which is the first one I've had in you know... FIVE YEARS. I got the side eye about that but truly, my glasses were fine and nothing had changed.

Then, of course, I had my AFE and stroke and that warrants some checking. In case you missed it, I had my stroke in the left occiptal lobe, which is where your eye sight function is regulated in the brain.

I've noticed that my glasses aren't quite doing it anymore and that I need to wear my glasses more and more. Certainly I need them for driving, 100%. I need them to watch TV now otherwise I can't read anything and pictures are blurry around the edges. Reading is fine so I feel like I'm not totally ruined.

But because of the stroke they gave me a more thorough eye exam, which took almost two hours, and he has seen every part of my eyeball and I had the worst headache after leaving there. But it's confirmed, I need to wear glasses almost exclusively. I have a MUCH stronger prescription and I need to change my drivers license to reflect that I need to wear them while driving.

Next up, my GUTS.

I've been complaining about stomach issues for awhile but only recently has it gotten to the point where I think there may be something wrong with me. It's intense pain, enough to make me double over in pain and take something for pain.

I've tried going gluten free, probiotics, fiber, stool softeners, laxatives, you name it, I've tried it. Nothing helps.

So the thought was maybe it was the methotrexate that I take but my visit yesterday confirms it almost certainly isn't that. So now I'm back to square one with a message into my primary care, who likely is going to pass me off to a gastroenterologist.

Fun times. 

Book progress.. this is daunting.

I've never done anything super ambitious in my life, something that requires a lot of patience, time, and work. I mean, I guess growing four humans is a thing, but aside from that, I've got nothing.

Well, nothing I can remember anyways.

I've been doing some journaling, and every once in awhile I start working on what I think might be my book about AFE and the aftermath, but then I get overwhelmed. Everyone tells me to just write- it'll come. Which, I guess that might be helpful to them but for me it's just not that easy. I used to blog and just do it, words would just come out and without any effort at all, I could make people feel something. Now I feel like.. it's just not there. Like that part of my brain isn't firing on all cylinders. I want people to read the book and feel a gut punch. Feel like you are right there with me on what have been my lowest, most private moments. There have been so many things I have wanted to blog about, share on Facebook, tell someone, and I just haven't. In my head I'm saving them for the book but I'm scared to put it all out there.

Then I think, well, a total stranger isn't going to fully understand how far I have fallen if they don't know where I was. So then I feel like I need to explain where I was, what kind of person I was, and that really is the only way someone can appreciate what my reality is now. I also think, I kind of have to explain my marriage and why it is the way it is.. otherwise me screaming at the nurses how dare Matt do this to me, after everything I've been through with his sorry ass!, won't really make any sense, will it?

I just feel like I have a lot of story and so little room to give it, if that makes sense.

So in the meantime, I have been sorting medical records. I separated out my actual hospital stay into one pile and the rest into the specialists I've seen. I'm slowly going through each pile, highlighting things I want to remember (or more realistically, refer back to because we know damn well I won't remember) and it's a very daunting task. I've learned some new things that I didn't know (or at least remember) and I'm trying to come up with a list of questions to ask my OB and anesthesiologist because they have both told me I can ask anything, anytime. So that is really great.

The worst though, by far, has been reading my mental health records. That is not for the faint of heart and unless you really want to know what your therapist thinks about you after you cry hysterically on the couch for 60-90 minutes, DON'T DO IT. Ugh. I had to stop but I know I need to go back to them. A lot of holes in my timeline will get filled by reading those because I know I've been brutally honest with her. All of the awful, dark, scary things I'm too scared to tell Matt or my family have happened in there. And it should be in the book. People, I don't think, understand what a toll this takes on a person. I consider myself to be a fairly logical, strong, common sense bearing person and if something like this could take me down? What would it do to someone who wasn't these things?

So there's that. Also new, well developing over the last few months, is this super fun rash on my face. On the left is my face, right away in the morning, no makeup or anything. On the right is my attempt at covering it up. I have this fun rash that has started on one cheek and is slowly creeping over my nose to the other side, and it feels kind of like a sunburn. Some days it's worse than others and it was noted in my file for the rheumatologist because it could be a sign of lupus. Which, that's exciting.

(Sarcasm.)

I go on Friday to that doctor and I'm kind of nervous about it. I'm sure it'll be all questions, maybe some labs, but I 100% do not think I'm walking out of there with any kind of diagnosis. It's thought that all of my issues have got to be an auto-immune thing because nobody else knows so I'm shipped off to the next specialist. I keep saying there should be some kind of punch card system and once I hit 10 doctors I get a prize or something.

I also see my pulmonary doctor on Wednesday and I can't really remember anything about him but in my notes I wrote that I really like him and he's super nice. So there's that. I'm going in with questions for him as well.

But today I see my therapist. I go every other week and honestly, she's so great and keeps me off the ledge, literally. I've said (quite a few times this week) that had I not started seeing her last November or December (whenever it was), I would have killed myself already. She is worth every dollar my insurance is paying for, which I'll be paying for come January. It's been a rough last week so I'm anxious for my appointment.

We're back! But first.. Matt gets to sleep with Darth Vader.

I know I promised you pictures and stories of our trip to Florida and those are coming! I'm still sorting through them and I want to get the ones from Matt's phone because he actually took some, you guys! I know, and he took some candids of me and though I look terrible, I'm going to share them because that's where I'm at in life.

I look terrible, but I'm living life anyways.

But before I do that I want to give you an update because someone asked me the other day how my sleep study went, and I didn't have any information because I didn't have a follow up yet. Well, that follow up appointment happened today so I have stuff to share so let's chat before I forget about it because if I don't get this information down somewhere, it's gone. It's literally gone and here is as good a place as anywhere.

So way back on my anniversary (June 12) I had my first ever sleep study done. It's no secret that I am exhausted all of the time. And when I say exhausted, I am not kidding.

And yes, this is when everyone then says, "Oh I here you, I'm SOOOO tired too! Ugh!" and I roll my eyes and want to punch you in the face. Sorry, not sorry. I know I sound like a broken record when I go on and on about my stupid pituitary gland, but the super fun thing about having panhypopituitarism is that nothing works. I have no cortisol and that's a big deal. Normal people still feel groggy when they wake up but eventually you get going in the morning because your pituitary gland is like, "Oh hey, it's morning! Lemme help you out there, buddy!" and gives you a boost of cortisol and that's what gets your entire body moving. You get a couple of these boosts a day, it's like when you get a second wind- it's your body giving you little shots of cortisol. I will never have that. The only thing I have is the steroid I take, which is what keeps me alive, and it's not nearly as good as the real thing because I am DRAGGING.

Which brings me to the sleep study. The whole point was to figure out if my excessive fatigue is because of my adrenal insufficiency and panhypopituitarism or if I also have sleep apnea on top of it making me even more tired.

The night of the the sleep study was kind of awful because it took them a really long time to get me hooked up to everything correctly. Most everything went on OK except for the things that go in your hair. My hair is very thick and wavy so they couldn't get the correct readings and it took almost two hours of tinkering and moving things around before they could let me go to sleep. Needless to say, by midnight (when I was allowed to finally fall asleep) I was dead tired. So tired, in fact, that I didn't roll over at all in my sleep. Not once in seven hours, which I can tell you right now is not normal for me. I left there absolutely exhausted. The whole day I was tired.

Today I learned that while I didn't register on their computer enough to wake me during the night to try the CPAP machine during the test, I probably should have one at home to try for the next ten weeks. I have mild sleep apnea, but the fact that I am so excessively tired despite taking my medications and taking a daytime stimulant already (which hasn't helped me, even at an increased dose, in fact I haven't noticed any difference at all), he's recommending that I get the machine and try it. So that's what I'm going to do. At this point I'm so desperate for some solid sleep I'll try anything. I can't even tell you when the last time I woke up in the morning feeling like I could actually take on the day. Well over a year. Possibly two. It's been so long.

So that's how my appointment went. Wednesday I go to Neurology for an EMG and I am very nervous about it. I made the critical mistake of looking it up online and pretty much everything I have read tells me this is a painful procedure so yay! I can hardly wait. But I have had the tingly and numbness in my arms and hands, but also my feet and we have to figure out if it's medication related or if it is a form of neuropathy. I have reduced the dosage of the medication that we think may be the problem and that has been absolutely awful (more on that later) and I still have the sensations, not nearly as bad but it's still there. So I don't know. Part of me wants to just cancel the procedure and say it's the medication, crisis diverted but then I think, what if? What if it really isn't and I'll just need the test anyways? I may as well get it done now while my deductible is met because god knows what's going to happen next year with health insurance, right? I don't know.

What I do know is that I am 100% sick and tired of feeling like a lab rat, like nobody knows what's wrong with me. I am tired of feeling like absolute crud. Everything on my hurts, all of the time, I feel like death is warming over and it's tiresome. To be told this is the best it's going to get is really awful and I can't imagine this being any kind of quality of life, to be honest.

Busted Mayo, disappointment oozes

The thing about having a rare medical thing happen to you is that you're often left in limbo as doctors figure out what to do with you. I'm lucky to have a really great team of doctors here locally, and I feel like they genuinely are trying to do the best for me. They all have said that most everyone dies during an Amniotic Fluid Embolism and those who do survive have such a variety of things to deal with in the aftermath so there isn't anything for them to look at as a guidebook on what to do for a patient.

As for me, the things I'm currently diagnosed with are:

• hypopituitarism 
• secondary adrenal insufficiency
• low thyroid
• depression
• anxiety
• adjustment disorder
• PTSD
• OCD
• suicidal ideation
• migraines
• Raynaud phenomenon
• hypoxic encephalopathy 
• Sheehan Syndrome
• Secondary Amenorrhea
• Diabetes Insipidus

So, it's a lot. I'm trying to juggle all of it and I'm really having a hard time keeping track of not just my medications and what is for what, what each thing is supposed to be doing for me, and how do I know if it is or isn't working, but I'm having a hard time keeping track of my physical symptoms and what each one is associated with. Some days I feel like I almost need a health professional here to just keep track of it for me. And when I have an issue? Who do I call? Do I call my primary care? Do I call my endocrinologist? Do I call my neurologist? Or do I need a different doctor? 

Anyways. 

Last week I had my three month follow up since my last appointment at the Mayo Clinic in Rochester, Minnesota. I wasn't totally sure what the point of the appointment was because they didn't tell me, so I went in not knowing what to expect. I knew I was going to have a lot of lab work and then my appointment, so I was there for an entire day. Nothing in my paperwork told me not to take my medication, it only mentioned not to take a multi vitamin or any medication containing biotin, which I don't take so I was in the clear. I even asked the lab technician, and she said I was good to go, which is great because if I don't take my medicine in the morning I am really nauseous and dizzy, just generally unwell. So I give my blood and I'm off to wait for several hours of waiting. I brought a book so I was OK with that. Had a small lunch in the cafeteria because I didn't have much money, and off to wait on the 18th floor. 

At my appointment the doctor informed me my labs were a total waste of time because I had taken my medication, which I should have just known to not take. Apparently she told me this three months ago and as a stroke victim with memory loss, I'm supposed to just remember this. 

(You're right, you're sensing a little sarcasm there. By god the ol' gal still has it.) 

I start telling her my symptoms: extreme exhaustion, nausea, feeling like I have a fever and the worst flu of my life though I have neither, dizziness, my hands/arms/feet frequently go numb or feel tingly, and when I do any kind of activity (like walking a few blocks) I feel like I've been beaten with a bat. I walked for a few blocks a few weeks ago and for three or four days after I could hardly move, I mean, hardly move and I'm not exaggerating. Every muscle and bone in my body hurt. There are some days I get out of bed and I really can't even lift Lucy anymore, let alone carry her down the stairs- I have to rely on Olivia to get Lucy and Penelope down the stairs in the morning. 

I'm detailing this to her, she's typing on the computer (I'm assuming she's documenting all of this), and she says to me, "Well, as long as you aren't dealing with nausea and fever, dizziness, that kind of thing..." 

Um... are you kidding me? Did you hear me? Did you seriously not listen to me? I just told you all that? 

So then I say it again. I go over it all again. I show her my emergency sheet where it says the 'warning signs of adrenal fatigue' and I explain to her that's how I feel EVERY DAY. Even if I take an increased dose of hydrocortisone, I still feel like that, what should I do? No answer. 

So I do what I absolutely hate, I absolutely hate because it's weak and it's not me at all. 

I start crying. I start crying because I'm confused, I'm overwhelmed, I'm frustrated, I don't know what else to do. I feel like, again, nobody is listening to me. Like I can't explain my situation well enough. That 10 months ago this would not be happening to me. That I would be able to explain how I was feeling and get my dilemma solved. But now? Now I feel like I'm speaking in a foreign language and nobody understands it. 

Overall? The appointment felt useless. I left there feeling like I wasn't heard, like none of my issues were worthy of being fixed. I honestly don't know if it's worth my time (or money) to go back. I have a message into my endocrinologist here in Duluth so hopefully he'll have some ideas for me. I also have one in for my primary care doctor too because maybe she can help me with the numbness and tingling in my hands and feet since that's relatively new. 

The most frustrating thing is every doctor wants me to lose weight, which I agree, I want to as well. I'm the heaviest I have ever been. The problem is that they all acknowledge that being on a steroid forever makes that difficult but to do the best I can. But every time I do any kind of exercise I'm in so much pain for days... what do I do about that? I can't be left immobile. I have to be able to move, be able to get out of bed. People keep asking if I have Fibromylagia and I just don't know enough about that. I've read a lot of articles and it's split 50/50 down the middle of it being real or not. I do know that I don't want to be on pain medication and I absolutely cannot afford another medication. Even if it does bring relief, I just can't afford it. I'm already worried about being able to afford what I have come January once my deductible starts over. 

So I'm going to keep plugging along. I'm still seeing my therapist every other week, and my psychiatrist who I feel really sorry for because I feel like he's really working hard to help me, and my myriad of doctors. I am having a sleep study done in June because the pulmonary doctor said my exhaustion could be my adrenal insufficiency, but it could also be me sleeping like junk at night. So we're going to do a sleep study to either rule one of those out. I'm kind of nervous about that because while some people can do a sleep study at home I have to do mine in the hospital because I tick off enough things that they want to be able to monitor things more closely. So that will be an experience, I guess. 

It's kind of strange to think I'm quickly approaching the one year anniversary and I feel no different. I feel like I haven't healed at all, I've not improved in my health, and I still feel like I'm in limbo. It's been such an awful, strange year.