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.

An endo what?!

So I figured I'd give an update before I forget about it. Or forget that I told you. Both are viable options here.

Yesterday I went to yet another specialist, Gastroenterology, so I continue to make my rounds to every practice within the St. Luke's health system. I've been having stomach issues since my AFE that I'm just now dealing with.

At first I was told that major surgery (emergency c-section) was to blame and give it time to heal. Did that. Then I was told maybe it was my medications so maybe I should adjust them. Did that. Maybe it was my diet and I should change it. Did it. Maybe I needed to get more exercise. Been doing that.

And still, I continue to have issues. The worst being random, intense pain in my entire stomach region. Below my boobs but above my belly button, it feels like I'm in labor but I'm clearly not. Sometimes I can deal with it and it doesn't stop me. A few times it was so intense I had to lay down. About a month ago it was so bad that I debated going to the ER for it. I didn't because by the time I convinced myself I should just go already, it was getting better and fading away. I'm dealing with everything from gas, constipation, to diarrhea, sometimes within the same hour.

Needless to say I hate going out into the world because I literally have no idea what kind of day it's going to be.

I consulted with Rheumatology, we ruled out my medications. I consulted with my primary care doctor, she felt it was best I go right to Gastroenterology because I would likely end up there anyways. I had spoke to my Endocrinologist about it but he said that while some of it likely is related to my steroids and hypopituitarism, the intense pain is not common so he thinks I should see gastro, too.

So I went.

The doctor was really very nice and he asked me a LOT of questions. I think this man knows more about my poop than I do so that's exciting. I think he had a few ideas in his head as to what it could be, but he also confirmed that a lot of the motility issues with my intestines and stuff are related to the hypopituitarism and that it in fact, will only get worse as I age. Something new about my acquired condition that I didn't know about. Makes me wonder what else is waiting for me that I have no idea is coming. But he has ordered a crap ton of labwork, an ultrasound, and an endoscopy.

What you should never do when you hear of a new test is Google it. Sometimes I feel like Google should just go away already because nothing good comes of it. You're either dying or going to be gutted by a camera on a string basically. So that procedure is scheduled for June 25 and has "prep" that goes on up to three days before. Luckily my prep is on a weekend versus during the week so I'll take it. But I'll have to have Matt drive me because I'll be put out for this thing being shoved down my throat and into my upper GI tract to take a look around.

Normally I wouldn't freak out, I'll be sleeping, what's to worry about? It's not like I'll see it going down my throat. My fear is coming into play because this will be my first major procedure since my "routine" emergency c-section. I'll be put out which means I need an IV of Cortisol because my body doesn't produce it and your body produces a lot of it during "stressful situations", which this would be one. I have to make sure they know that and do it otherwise I could go into adrenal crisis right away and if not treated, I could die. So nothing is routine for me anymore. I'm really worried about it. I have a million questions and I already feel a ton of anxiety thinking about it. Which makes me wonder if things like this will always worry me?

The bright side is I'll have Matt there so he'll be in charge of making sure they are doing what they need to and I'm sure it'll be fine. I'm probably worrying about nothing. I'm more worried about the procedure than I am of them finding something wrong with me. But dang, I almost hope for something because the pain is pretty awful. Sigh.

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.

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.