Adventures in Lost

 Today Ellie was supposed to graduate with her Masters of Science in Nursing. After she passes her boards she will be an Adult/Geriatric Acute Care Nurse Practitioner. But it was cancelled.

I was reflecting on all of the losses that we’re all experiencing. There are so many. Not only the loss of life. That’s a story for another time. I’m talking about all of the losses. The high school wrestler trying to be a four time state champ. The college senior excited about her last time to get to play softball at this level of competition. The underprivileged basketball star whose coach had lined up scouts to come watch him play so that he’d have a shot at going to college. Prom. Yearbook signing. Kindergarten spring play. MLB Baseball. Even the funerals for those who have died during this terrible time.

I’m reminded of my favorite story of my nephew, Bridger. My sister and her husband were out of town and my parents were taking care of Bridger, about 4, and Caid, about 2. They had gotten happy meals at McDonalds that day, and the toy that came with it was a really awesome Star Wars Storm Trooper. Bridger was so proud of it, he came in and showed my husband Sawan and me, who happened to be at my folk’s house. We oohed and ahhed. It was bedtime, so the kiddos started the bedtime routine, and fifteen minutes later, Bridger was completely distraught because he couldn’t find the Storm Trooper. So we formed a search party. Mom and Dad took the upstairs, Sawan and I took the downstairs. We moved couch cushions, we looked under furniture, we tried to think of what a four year old could have possibly done with the toy in the last 15 minutes, but we didn’t find it. Finally, my dad took a knee in front of the crying Bridger and tried to get him to retrace his steps. He said, “Ok. So, you had it when you came in from the car.” Bridger nods. “Then you showed it to Noey and Sawan.” Bridger nods. “Then you went upstairs with it?” Bridger nods. Dad says, “Do you think you know what you did with it after that?” Bridger nods in the affirmative again. We all breathe a collective sigh of relief. Why hadn’t we started with this tactic? “Oh! Well, what do you think you did with it?” In a loud sob he cried, “I think I LOST it!” It was so cute and heartbreaking and hilarious all at one time. Sawan was so tickled. When I try to remember the sound of Sawan’s laughter, I go to this memory for it.

When I recounted this story to Bridger’s mom, though, she didn’t think it was as funny as I did. She explained to me that Bridger thought that Lost was an actual place. It’s something he said all the time. “Where is it Bridger?” “Mom, I told you, it’s Lost.” 

When people talk about loss and death and grief and people dying, everyone has different language that they prefer. I know lots of widows that hate it when people refer to their husband as “lost.” “He was not a set of keys,” says one of my widow friends of her husband. My personal distaste is for the term “passed.” Because to me, I think that he was not gas. My dead husband was not a fart. So I say that I lost him. I like to think of him going to Bridger’s place. To Lost, where all of our favorite needed or loved things go. He’s there, hanging out with Bridger’s Storm Trooper.

But, I thought about this Lost place for the first time in a long time today. Maybe Lost is a place for experiences, too? Maybe all of those losses that we’re experiencing here are being enjoyed by those that we’ve Lost. Maybe Sawan and his homies got to watch this year’s Opening Day. Maybe he’s getting to watch cutie pies in plays and awesome softball games and triumphant wrestling matches and come from behind wins. Maybe he’s getting to cheer rights of passage and comfort the grieving. And maybe, just maybe, he’s getting to watch Ellie cross the platform, and he’s standing up and doing that whistle thing with his fingers really loud. ‘Cuz I know he would if this all were true.

Crazy Health Stuff- Update 5

I’ve been meaning to post an update for a while now.

For those of you just tuning in, my crazy journey began about two years ago with pretty serious unexplained weight gain (I’ve gained more than 50 lbs.), along with several other health things, like I was exhausted all the time. This led me to see a doctor, then I was referred to a specialist, then I had some major health insurance woes, then I was diagnosed with a non-cancerous pituitary tumor, then I finally got the right insurance that took affect in January of this year. I’ve done multiple rounds of tests over the last two years that make them think that I have something called Cushing’s Disease, an endocrine disorder that means that my body is producing too much Cortisol. Cortisol is responsible for fight or flight—so my body constantly stores any calorie as fat because it’s afraid I’m going to starve, and also I’m always exhausted because I’m constantly revved up like I’m in flight mode. It also includes things like body acne. It's really a treat, let me tell you.

Here’s the latest:

Last time I reported that the doctor needed me to stop taking one medication and then re-take a urine test. It came back with the same results that I had while on the meds, indicating that the issue has nothing to do with said medication.

When my doctor called to give me those results she told me that they would schedule the more invasive test, and that I had been the topic of discussion at their monthly conference. Apparently, the whole group of specialists and surgeons and everyone involved in the pituitary clinic at the hospital get together and talk about the crazy cases once a month. I have it on good authority that for me to be their topic apparently means I’m famous.  I will happily sign autographs.

I'm excited to go get my head examined!

It took a few weeks to get the test scheduled, and I finally had my test on Wednesday, which was yesterday. It took pretty much all day. Here’s how I understand that it works: They sedated me, and then inserted a catheter into my veins and took fluids from around the tumor site. Then, they injected something else in the pituitary gland (in my brain, where the tumor is) and took more fluids. This will tell them for sure if the pituitary tumor is causing all of the cortisol issues in my body, or if there is some anomaly elsewhere.

The doctor performing the test was this cute old man in his late 60’s, and he looked like the dad in “Bread and Jam for Francis,” which was one of my favorite children’s books about a family of badgers. As usual, the doctor told me after the test that I had “weird anatomy” in my brain. I’m always the rare case that they’re like, “He-ey, I’ve never SEEN this before! Do you mind if I get my med student/colleague/mother-in-law in here to take a look at this?” I guess there’s one part that usually only takes seven minutes and it took him 32. The whole test part took about two-ish hours and then I had to be in recovery for four-ish hours. I had to have a “responsible adult” pick me up, so Ellie was my hero as usual. I think that they asked her things like, “Do you have a good job? Do you pay your taxes? Have you kept your dog alive? Do you make your bed?” and stuff like that to make sure she is responsible. It’s a good thing Ellie was there because I was pretty out of it. I don’t remember much of recovery or of the rest of the afternoon. The only part that I really remember is asking Dr. Francis’ Dad if I could see what it looked like inside my brain, and he texted me photos. It’s pretty cool.

Inside my brain from the side (that's my cartilage piercing in my right ear that you see in the photo). 

Inside my brain from the center. My nostrils look like eyes on a scary moth creature.

I’m pretty sore today, and I have a crazy headache. But, I have headaches all the time so there’s no telling if this is from the test or just a stupid headache. My guts do feel a little bit like someone tried to drive something up to my brain via my veins.

Mostly I’m just stoked to finally be close to getting some real answers. I’ll keep you posted!

Father, in "Bread and Jam for Francis"

Crazy Health Stuff- Update 4

Yesterday afternoon my fabulous mama hung out with me at the doctor’s office. All. After. Noon.

I had an appointment with one of the pituitary specialists in the clinic that I went to in early January. Since that appointment in January I have done two rounds of the three types of cortisol tests, not because it would have been necessary to do two sets, but because the orders were wrong on the first set. Lucky me.

After the last appointment I was super discouraged, because I felt like they were telling me that I probably didn’t have Cushing’s, and it really occurred to me for the first time that it was possible that they weren’t going to be able to figure it out and fix me. That I may just have to live like this for the rest of my life.

Yesterday the pituitary specialist seemed to think that Cushing’s is still the best possibility for what I have. She told me I looked “cushionoid.” Which is, I think, a real word.

So, even if this requires surgery, which still completely freaks me out, it at least feels good that they have a clue.

Next steps mean that I have to quit one of my medications for two weeks because they’re just a little afraid that it’s affecting the cortisol levels, and then redo one of the tests. If that comes back with consistent results to the previous tests, then they will do one more test before surgery. They’ll go in to the area around the tumor sight, and take fluids from there. As I understand it, if those show high cortisol, then they will do surgery.

So, that’s the skinny. At this point I don’t even know how to feel. I think I feel cautiously optimistic, even if I panic when I think about surgery. I think it feels good to know that they have a clue about what’s wrong with me.

I’ve spent quite a bit of time at LabCorp for these tests. On Valentine’s Day, I went in early to have my blood drawn, and I ran into this guy. He had a seriously awesome mullet, and when he took his jacket off to reveal a cut-off t-shirt and suspenders, I thought I should maybe ask him out. I settled for taking a selfie with him in the background.

Health Saga Update- Number 3

I had my doctor’s appointment last week. I have such mixed feelings about it that I didn’t feel like I was ready to write about it.

Here’s what happened:

When the appointment began, I gave the doc a brief history and then told him the place I was at with the last endocrinologist (she thought I was ready to see a neurosurgeon). He said, “I don’t think we’re there yet.” When he looked at my test results they looked too normal to him. And, I think because he was trying to encourage me, he told me some horror stories about the surgery. It didn’t quite have the affect that he was hoping for, though, because I think that surgery is still really likely in the future, now I’m just completely freaked out about it instead of not scared at all.

I feel like I’m painting him as a monster, and he wasn’t. He was actually nice and compassionate, and I liked him. He just didn’t tell me what I wanted to hear. He also said that he would like me to see one of the more experienced doctors in his clinic (two of the doctors there are world-renowned), and that he wanted to run the tests again. So I spent another day sitting at home, keeping my pee in the fridge (for the fourth time in a year). I wonder how many more times I have to do that, because, gross. I turned in the “specimen” along with a saliva test yesterday, and am doing the blood test this week. I should have the results in a week or two at the latest.

I asked him what else it could be if it wasn’t Cushing’s Disease. He offered some suggestions, but, (at least what I heard him say was) that sometimes depression can look like this, and had I been depressed? “Actually, no.” I said. Then he told me that it’s a lot harder to take weight off then it is to put weight on. That was when I started to lose my mind. I understand that he would think that. I know that I used to judge people that looked like me all the time. I just didn’t understand what they could be going through. So, while I felt compassion for them, I think that in the back of my mind I thought they were lazy and undisciplined. If they would work out and eat right, it would get better. So, I told him that. I told him that I knew that I would always struggle with my weight because I was genetically inclined to be overweight. But, most of this weight was put on with me eating 1200-1300 calories a day (and I could have shown him my food journal) and working out five days a week. I think he believed me, but that had pretty much exhausted his ideas for what was wrong with me, so it feels like a step back, since I have no answers and before I felt like I did (the answer was: You have Cushing’s. You need surgery.)

The plan moving forward is to see what the results of this round of tests are, and then he and the other doctors in the practice will talk about it and then get me scheduled for an appointment with one of the more senior doctors. So, I’m overall really discouraged, but I do feel like I’m finally at the right place so that moving forward I will actually see some progress.

I feel like I should also give a shout-out to Ellie, who came with me to the appointment even though she had food poisoning and was trying not to puke the whole time (she made it!). I’m so very lucky to have such amazing support.

Sorry, that was a lot of words to say that nothing happened. But that’s the scoop and I’ll keep you posted.

Also, I’m starting back at school on Friday. When I was planning for a surgery I decided that I would only take one class, and it’s Comp. So maybe I’ll have some fun writing samples to post on here. Love to all of you!

Health Saga Update- Number 2

There has been so little movement on my health stuff since October that I haven’t bothered to update here. I still have very little to add, but thought I’d at least let you guys know that I haven’t fallen off the face of the earth.

I was supposed to go see a neurosurgeon last October, but between the surgeon and my insurance I couldn’t get an appointment and I honestly didn’t try that hard. I knew my insurance would change in 2018 and that I would want to see a surgeon from the new clinic. I finally have an appointment on Wednesday at the endocrinology clinic that I tried for months to go to, and they’re in network with my new insurance plan, so hopefully things will get a lot easier. It still feels like I’m going back a step, but now whatever they recommend should actually be feasible under the new plan. Fingers crossed!

Health Saga Update--number one

I know I’m posting an update on the same day that I put up the original post, but I had written it a week ago and forgot to put it up. It was easier to just do it this way rather than edit. Sorry about it.

I got the results of the last saliva tests. The way it works is I have to put this thing in my mouth between 11 and midnight two nights in a row, keep them in the fridge, and then turn them into the lab.

One of the samples tested at the very highest point of normal, and the other one tested in the not-normal range.

Woo. Hoo.

That was enough for the endocrinologist to recommend going to a neurosurgeon.

I’m stoked. I know that it seems strange to be rooting for bad test results so that I can have brain surgery. The thing is, it means that they have a clue about what’s wrong with me and we can make a plan. After a year and a half, that’s excellent news.

My Health Saga

I’ve been meaning to write this post for a while. I’ve got some crazy health stuff going on and so many of my people have wanted to be updated. I thought that I could maybe just post updates on here and then it would reach everyone at once.

I’ll start at the beginning. It’s long, so if you know this part or don’t want the details feel free to skip around…

In March of 2016 I hurt my back at Orange Theory. It felt like it always felt when I would “throw my back out,” but this time I kept not getting better. Finally, at the beginning of June 2016, I went to a doctor. He told me that I had actually torn the ligament that connects my hip to my spine. He was hoping to avoid surgery, so he prescribed physical therapy and a three-week course of prednisone (steroids). I am one of those lucky (insert sarcasm) people that, as soon as I even think about skipping a workout, I gain a pound or two. I continued eating pretty healthy, but I was gaining weight like it was my job. To put it in perspective, I gained 7 lbs. the month that I did the Whole 30 (like paleo, but less fun and more intense, and people usually lose 10-ish pounds when they do it). I was finally cleared to get back to working out in September. I was so stoked, because I was thinking that it would take time, but I should start to see a downward trend on the scale.

Except I didn’t. I kept gaining at the same rate. In October I went back to the doc. She ran a few tests, and one of them came back with results that looked like Cushing’s disease. It’s a super hard to diagnose, super rare endocrine problem that is sometimes brought on by steroids, sometimes brought on by a tumor either on the adrenal glands or the pituitary gland. It has to do with out-of-whack cortisol levels, which is your “fight or flight” mechanism. Symptoms include weight gain in a particular pattern (mostly in the belly, with skinny arms and legs, but a round face and a “buffalo hump” on the shoulders), headaches, adrenal fatigue, and body acne, so basically it’s just a whole lot of fun. I was referred to an endocrinologist, who explained to me that it takes time to diagnose, because the tests have to be judged against each other, basically. So we would have to run tests, wait a bit, and run more. Then, my insurance company said that even though they had originally said they were, these doctors weren’t in-network, so they weren’t going to pay for them. That meant I had to start with new doctors. By the time I finally got to see an in-network endocrinologist, it was the beginning of May 2017.

The new doc, which I actually liked better than the other one, told me that there was no way that this could be steroid induced, as the last endocrinologist had suspected, because my last dose was in August 2016 and my cortisol levels would have started to improve immediately. That left tumor caused.

In June I had an MRI. Let me just take a minute here to thank Jesus for Valium. MRI’s were discovered, I think, to use in place of being drawn and quartered. So, I got to get tortured for about an hour and pay almost a thousand dollars for it. FUN! Back to the story, though, when the results came back they had found a small adenoma (tumor) on my pituitary gland (in my brain). I heard brain tumor and did a minor freak out, until I realized that it was non-cancerous and I also remembered that I was widowed at 30 and survived so I’m basically resilient.  The kind of tumor that it is occurs normally in 10% of the population, so they needed to run a few more tests to make sure that it was Cushing’s disease before they would recommend surgery, the only cure for Cushing’s. If it isn’t causing Cushing’s it can just stay in there, because in most people an adenoma like mine is totally harmless and it’s not a good idea to cut into my brains if it’s not absolutely necessary.

There are 3 types of tests for Cushing’s (blood, urine and saliva), and I needed two out of three to come back with abnormal numbers. The blood numbers are always abnormal, so that was good (I guess?). We did another round of urine and saliva tests. That’s a treat let me tell you. This might be over sharing, but the urine one requires keeping all of my pee for 24 hours. In the fridge. Gross. In the end, the results on one were totally normal and the other weren’t normal, but weren’t abnormal enough. The endocrinologist told me that my case was basically too crazy and she didn’t know how to treat me. So, I could do one of two things. I could wait a couple of months and then we could run the tests again, or I could go to a research facility. I didn’t want to wait.

At that point it was July, and I started trying to get my insurance to cover a research facility/specialty clinic. Trying to get the clinic and Cigna, my insurance, to cooperate with each other required being on the phone with one or the other of them daily, sometimes both, from July until the last week of September. After all that, Cigna’s decision was that they wouldn’t cover an out of network doctor because they had people in network that could treat me. (Really? Cuz the in-network doctor said she couldn’t treat me.)

I did a number of things. I cried and threw a fit. I filed a complaint with the insurance commission. I went back to my in-network endocrinologist to formulate a plan.

She told me that I should just wait for open enrollment and start with a new insurance company for next year. I am going to do that, even though it infuriates me because it means that those f*ck3rs at Cigna win. She also ran another set of tests, now that it’s been a couple of months (that was her plan B back in July). I’m still waiting on results.

And that brings us up to date. It’s frustrating. It’s time consuming. It makes me feel impotent. And, I already don’t feel good. I’m exhausted all the time, and I feel fat (at this point I’ve gained about 45 lbs total, which is more than 1/3 again what I weighed back in March of 2016 when this whole thing started), and I always have a headache. I’m pretty sick of it and just want to get better. There are things I want to do, like go out at night with my friends (with adrenal fatigue, I'm always too tired). Like put on my socks (it’s hard with all this extra weight in the way!). I don’t give up. We’re gonna get this thing figured out.

Here's a visual. The above two were taken about a month before I hurt my back.

This one was this summer. 40lbs. later.