Pandemics are not fun.

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

But I am not because of a pandemic.

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

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

People like me really need you to Netflix and chill.

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

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

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

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

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

Weight loss challenge, week 11 (the time I knew more than a doctor)

Welcome to week 11, lambs! I feel like this is going to be a good week, mostly because anything will be a step up from last week. If you remember from last week, I had some pretty lofty goals (for me) for this week. I wanted to do 3 workouts, 2 days on my recumbent bike, limit soda, and stick with intermittent fasting.

Amazingly, I only fell sort a little. BUT!! I had a really great reason!

I got really sick! It started super early Tuesday morning and I woke up throwing up, diarrhea, the whole bit. Didn't think it was a big deal, this randomly happens, I manage. After it was happening steadily every 15 minutes for four hours... I started getting a little worried. Technically, if this happens twice in an hour, I'm supposed to go to the hospital and be observed for adrenal crisis. Do I do this? No, I do not. Why? Because it happens all of the time and I don't want to be one of those people. I use the ER for legit emergencies. By the time my mom gets to our house, about 8 in the morning, I decided I can't drive anyone to school so Matt comes to get Jackson and I call Penelope in because I'm sure we can get her there but picking her up mid day is an issue. So that's squared away.

As soon as Matt gets back to work I realize I'm shaky, I am suddenly so tired I am having a hard time staying awake, I feel freezing except I'm dripping sweat down my back, and I generally don't feel well. My gut is telling me it's time for the ER so I call Matt (who literally had JUST punched back in at work.... sorry babe) and he takes me. This is another time where I am VERY grateful to have my mom here because she stayed with Penelope and Lucy because you just never know how long an ER visit is going to last.

We didn't even make it all the way there and I'm telling Matt to pull over and before he stops, I'm puking out of the car door. If adulthood came with merit badges, I just earned one for my sash.

We get to the ER and I can't even check myself in. I tell them I might be in an adrenal crisis, and I sit down while Matt does whatever you do to check in. The triage nurse sees me and I'm not kidding- I thought there were two of them because everything is starting to look slanted and wavy. I go sit in the waiting room and decided I'm going to lose my intestines so while I run to the bathroom, apparently, some older couple came INTO the ER with an actual dog that was NOT a service animal, who proceeded to poop all over the emergency waiting room. Honestly at that point I felt like if I didn't make it, I could reasonably blame it on a dog.

By the time it was my turn to go back I wasn't even sure I could walk back there and the nurse was so rude and completely over her shift. The doctor pops in, I tell him what I think is wrong with me, show him my ER info sheet I got from the Mayo Clinic and I kid you not, his actual words were, "Huh. So this is a thing?" I tell him what I need and how to treat me and he wants to refer to Endocrinology, which is great. Turns out they aren't even sure what to do so they say exactly what I said but invite him to call Mayo and see if they give a different answer. He didn't seem excited to do that despite I have the direct number and my patient number on my special sheet of paper, but you know. Do what you want, I guess.

You guys. This is now the SECOND time I have come to the ER for the same thing and the second time a doctor had zero idea what adrenal insufficiency is or what to do for it. I can't even.

So they get me the worst IV I have ever had in my life (courtesy of nurse who hates her job), they give me Zofran for the nausea and Dexamethasone (which is the emergency med for AI) and I'm not kidding you- within minutes I felt like I could run a marathon. I had already taken a triple dose of my medicine at home (like I'm supposed to) but it wasn't enough, obviously. So I sit there for four hours with an IV giving me fluids and medicine. I kid you not, the second that second bag ran out, I knew it. The last of my medication was administered a few minutes before and I immediately felt like crap again. They didn't want to call it an adrenal crisis because they "aren't confident with that terminology" so they called is gastroenteritis. Except my discharge paper says gastritis, which is completely different and not what I have, so that's nice.

I went home and went to bed. Matt got me popsicles. I drank a lot of water. I puked and pooped a lot. Slept even more. Took more hydrocortisone. Slept again. 

The next day I did not feel well at all. This time I had a horrible headache, I felt like I had a fever but I didn't, I was still puking and pooping, I had chills, my lower back hurt, I felt like crap. Penelope took this picture of me sometime after their nap. I slept when they did but I didn't hear them come down stairs, turn the TV on, get a snack, find their drinks, knock a bunch of toys down, grab my phone, nothing. I woke up when Matt came home to tell me we had to go get his truck. Honestly, I went in my dirty, smelly pajamas and my hair in a bun because the ends had puke on them.

Matt is SUCH a lucky guy.

I had two pretty OK days. I still couldn't eat because I had no appetite and I was still puking and pooping but it was more manageable. 

Then Saturday I got VERY sick again and decided to screw the ER and I just popped steroids all day until I felt marginally like I was going to live. Lucy made me carry around this bucket because she was very worried about me puking apparently.

BUT!

Through all of that, what did I get done this week? I got TWO workouts and ONE bike session. Not bad. I had no caffeine and didn't fall at the intermittent diet because I had no food and I threw up water, so that also counts as a win.

I kind of was a rockstar last week, you guys.

For this week I have the same goal: 

1. THREE workouts with Beachbody

2. TWO recumbent bike sessions, each being 20-30 minutes long

3. Reduce caffeine, no more than 8 ounces a day

How did you do last week? Do you have weight loss goals for this year? Check back next week and I'll hopefully have a video of me. No video this week because I legit look like death and I haven't showered since Friday. That's my #treatyoself for tonight. Seriously, Matt is such a lucky guy. HA!

Mayo, not just for sandwiches

I've had kind of a mixed bag with my experiences at the Mayo Clinic in Rochester, Minnesota. It's kind of THE place to go if you have something bizarre going on with you because these are the experts. These are the people who see the worst of the worst. On one hand, that's awesome because if there is something to find and fix, they will (presumably) be the ones capable of doing it. So though I know my diagnosis list are accurate (so far) I keep going hoping that my quality of life will improve. 

This visit I met with an entirely new doctor because the woman I had been seeing is no longer practicing at Mayo, and I'm OK with that. I don't feel like she really understood where I'm still struggling as far as my endocrine system goes. The new doctor was really lovely and the supervisory doctor was really nice, even if he spoke to me as if I was special needs or something. The doctor took a really thorough "why are you here" assessment, she sounded like she had read my file (the good, the bad, AND the ugly) and she had a handle of what I've done, and where I'm at. 

My biggest complaint is my fatigue- my level of exhaustion is laughable. When I tell you that I could nap on demand, I'm not joking. My night time sleep has greatly improved since my pulmonary doctor got me set up with a CPAP machine, I sleep like a rock at night, I don't flip and flop around, I am dead to the world. I still wake up feeling like I could sleep indefinitely. Some of that is because my pituitary gland is shot, so the hormone that gets you going during the day, Cortisol, is something I don't produce at all. Which is why I take my first dose of hydrocortisone first thing in the morning, to help me wake up. 

Except that it doesn't do anything. No matter how much I take. 

Secondly, part of my crisis plan for secondary adrenal insufficiency says that when I feel "ill/unwell", I need to take my emergency dose of hydrocortisone. It was explained to me that what they mean is the feeling you get when a normal person would think, "I should maybe call into work today". Which, OK- that's pretty severe in my case because I basically suffer through when sick. But the problem is that I feel that all of the time. Every day I essentially feel like I have the worst flu of my life. The only comparison I have is the time I had H1N1 flu years ago and I thought that I might actually be that person who dies from flu. That's how I feel, every day. My hair hurts. My skin hurts. I feel like I have a fever, but I don't. I feel like I have the worst body aches of my life. If I try to do exercise (a light walk, nothing crazy) it hurts worse and the next three days I'm bedridden, in full pain and hardly able to move. 

It's crazy. And awful. 

Well, the doctor was absolutely perplexed. My labwork confirmed that my pituitary gland is 100% dead. The last labs I had done, in May, showed such a tiny amount and they weren't sure if it was my gland trying to do something or residual of my medications. This time, I had no meds for 12 hours before labs and I limped to my labs, yawning the entire way. The labs themselves were dismal but at least it confirms I am not going to get better, if anything my symptoms might get worse. 

Secondly, my estrogen is gone as well and though birth control pills give me migraines, I need to take them regardless. I have bone deterioration already and despite all of the risks that taking birth control at age 35 and beyond, I don't have a choice and I need to take my chances because I can't have my bones falling apart at age 35. 

Third, I get to go to what I'm calling a fat kid class in the Bariatric Center. I have to do that before I can see a bariatric doctor, which I need to do because I desperately need to lose weight. Except I'm on steroids for life so that makes it tough to lose weight, but more importantly, I can't be exercising. I can go on light walks and a little water aerobics but that's about it because my body doesn't produce (dun, dun, dun) Cortisol! Guess what your body produces when you exercise? When you put any kind of stress on your body? Or when you're stressed out about life in general? 

Cortisol! 

So when life gets stressful, I actually will worry myself sick. Being stressed out will make me sick. 

I know, you're laughing, aren't you? It's OK, because I started laughing and quickly deteriorated into crying because I'm a mom of four kids, I'm deeply in debt, and I have no idea how we get by each month- MY LIFE IS STRESS. 

The other nice thing about Mayo? Is that you learn a lot. So I learned that Sheehan's Syndrome is different that being born into panhypopituitarism and adrenal insufficiency or having it gradually come on because in those cases your body slowly adjusts to the slowing flow of hormones and your symptoms slowly start popping up, signaling to you that hey- we've got a problem here. In the case of Sheehan's, it's brought on by a major post partum trauma, your body has hormones, next minute, nothing. There isn't that gradual slowing down of the hormone faucet, so to speak. You're instantly smacked into worst case scenario with your symptoms and it's hard. It's really hard on your body. 

Will I get better? 

Nope. 

I was officially told that as awful as this is, as awful as I feel, it's 100% guesswork with my medication and it won't make the worst of the symptoms go away, but I'll be alive. I'll feel awful every day, but hey- I'm alive. 

Honestly, it doesn't even feel like a perk, to be honest. Imagine living the rest of your life with the worst flu you've ever had, times 100. I can't even enjoy the things I used to do knowing full well I'm going to pay in pain for days. It's totally depressing. 

Shake your booty. And everything else while you're at it.

One of the annoying things about Secondary Adrenal Insufficiency and Hypopituitarism is that a sick day isn't just a sick day for me anymore. I can't just die quietly on the couch binge-watching episodes of Supernatural like any normal person.

No, what would be a regular sick day for you is now me monitoring myself carefully for any kind of change. I have to alter my hydrocortisone because my body  no longer naturally produces that, and that kind of kick starts your body to do stuff. Important stuff like you know, fight off bacteria and viruses. The irony is that a lot of the sick day symptoms are what I feel every day all day. So I have to make a judgement call and it's stressful. The goal is for me to be on the lowest dose of steroids as tolerated because this is a lifetime of medication.

Last week I got my first test into this when on Wednesday I started feeling shaky. At first it was just an annoying shake that was periodic, much like when you get a chill. As the day wore on it got a little worse until eventually, it was full body shaking and I had no control over it. I wasn't cold at all but I put on extra clothes, turned on the heat and hoped for the best. As precaution, I took my sick day dose of medication just in case and I headed to bed.

I woke up at 3 a.m. shaking so hard my teeth were rattling. I woke Matt up and told him I needed to get to the emergency room because my fear is that I was going into an adrenal crisis, which is serious and life threatening. Matt, not so nicely, let me know he was too tired to get up and couldn't I just wait until morning?

I'm not going to lie, I was pretty angry but I was also pretty hurt. It's not like I want this for the rest of my life. It's not like I enjoy feeling the daily stress of managing my medication just right or I could get seriously ill or worse, die.

So I called my mom, who was here almost immediately. And wouldn't you know, it had rained and froze so everything was sheer ice. My mom is literally a saint and I am so grateful for her. I would be absolutely lost without her.

By the time we got to the emergency room I was shaking a lot but I didn't feel any symptoms (no fever, vomiting, or diarrhea) to give me any hint as to what was wrong with me. Nothing more scary than a doctor who really doesn't know anything about the medical conditions you have and when you hand over paperwork explaining it, he says, "Wow, too many words.". It's disconcerting at best. He told me he was going to have to look it up and figure out a game plan but in the meantime, I'd be having a bunch of blood work done, including my blood sugar, and then a urine sample. I never did get the results of my blood work, but my blood sugar was just fine, my blood pressure was high, and my urine screamed of sever urinary tract infection.

Which is weird because I didn't have any symptoms of that. I've had UTI's before and it burns when you pee and generally uncomfortable, so you call your OB and get an antibiotic and you're fine. This doctor said that because I had the chills that is indicative of it being in my kidneys so he gave me a pretty mega dose of antibiotics for a week. I was really shaky the rest of the day and hardly slept at all that night. But the next day (Friday) I was less shaky, only dealing with it in small bouts but it wasn't anything like the day before.

I'm really  hopeful I'm over this bump in the road because tomorrow? Well tomorrow I am going on a last minute, spur of the moment, early birthday trip with my best friend Tammy to Las Vegas! My therapist and my psychologist have been really pushing me to get away from home, family, responsibilities, and just relax. I think they are right and it's becoming abundantly clear to me that I haven't had any time to just..... do nothing. I came home and was thrust right back into my role as mom and wife and I haven't processed what life has been like for me, what life is going to be like going forward and everyday I feel like I'm on the verge of giving up and jumping off of the bridge. We found the cheapest vacation while booking basically last minute, so our options were limited to cold places of Vegas. I've been to Vegas but Tammy hasn't, so it'll be fun. .We are going to have a nice time, relax by a pool in the sunshine, read books and maybe find some fun things to do that don't cost a lot. I'll be gone for five nights, I can hardly wait.