Medical update, weight loss, and cat butts.

I haven't done a medical update in kind of awhile, not because I have nothing to report, but because I'm trying to figure out what's next. Let's go by department, shall we? 

Psychiatry: I see my new guy in March. I am grateful I even have a new guy considering the ridiculous lack of mental health resources anywhere, let alone quality ones. I'm a little bit nervous for this because my last psychiatrist was amazing and if I could still see him (even though he's in a state far away and a totally different health system), I would because he was the one I trusted with all of my medications. Part of my psychiatry visits is to monitor all of my medication use because I am considered "high risk medication use", so I have to be monitored. Yay. He would always tell me what would happen with a med, how I would feel, when to call, and he believed me when I would report weird side effects. Having a doctor believe what you're saying is huge and I am already missing that a lot. So send all of your Care Bear vibes my way that this is a good fit for me because my other option is less good, we'll put it that way.  

Neurology: This guy. If there has ever been a department that blatantly says, "I don't care" and can walk out and nothing is done about it, it's neurology. My really great neurologist has left, and I hear rumor that she's setting up shop somewhere else so I have to do some sleuthing on that because this guy is THE. WORST. I went for migraines, and he was mildly helpful with that but I ask about the nausea, and flat out say that Zofran doesn't work, he prescribes me Zofran. It's like, are you deaf or dumb? Which one? I ask about my memory issues, and he says, "that's too bad", and GOT UP AND LEFT THE ROOM. That's it. That was the end of my appointment. In the notes he says I'm depressed and that's my problem. And you know, I 100% acknowledge that I am depressed, absolutely no question. 

BUT. 

I am actively seeking treatment and I am 100% compliant with my treatment, so he can jack off. And I say that as nicely as possible. I've had two doctors mention this note and to them I say, perhaps I wouldn't be so depressed if any one of my health issues could be fixed, or maybe if I could remember my address and how to get home, or I could remember where my kids are during the school day or when to get them? It's pretty bad that I rely on my 15 and 12 year old to tell me where I need to be. 

But you know, that's too bad. 

Rheumatology: Honestly, I don't know why I even go anymore. Well, that's not true, I go because I have to in order to get medication refills each month, and they monitor my lab work. My lab work looks great, by the way. My inflammation is down with a slightly higher dose of Methotrexate, but if this starts to not work I will need to go to an injectable version and that does not please me. I'm afraid of needles so the idea of me doing it myself is ridiculous. I could have Matt do it but he isn't always gentle, and I know this because he helps me after any medical procedure and yeah, the level of gentleness is not something we agree on. So I'm not excited for that. I think honestly though, I'm going to just not say if I hurt any more and wait on that until I get really bad, if I ever do. I asked about my fatigue, the extreme fatigue, and she had no idea. She suggests maybe I do mindful and deep cleansing techniques. 

Weight loss: Admittedly, I've dropped the ball here. I haven't been exercising and I haven't see that doctor in almost a year. I know, it's bad. At this point I'm almost afraid to make an appointment knowing full well I'm going to get yelled at. The bright side? I'm still losing weight, but I'm certain that's because I'm sick to my stomach and nauseous all of the time but hey- no big deal, right? Sigh. 

I am currently 169 pounds depending on the day and when I started this, I think I was 212, so if those numbers are right, I've lost a little over 40 pounds. The goal was for me to get to 160, check all of my lab work, and see if I moved myself out of the pre-diabetic group, and then talk about long term maintenance. I am so close, and I need to just make the damn appointment already. That orange shirt, though? I bought that in 2015 when we were in South Dakota and it was a little snug. It is currently a little loose and I don't hate it. 

Gastroenterology: I still tear up when I think about my last two GI appointments, mostly out of anger. If you've been following along, you'll know I've had a ridiculous amount of lab work, endoscopies, colonoscopies, scrambled egg test thing, the CT scan thing, ultrasounds, MRI's, and x-rays. I feel like I have done it all aside from a barium test and I had already decided I would refuse that. HARD pass. Anyways. 

All of it says I'm normal. All of it. All of my lab work is within normal ranges and I keep saying to my doctors that what is normal for you, or the general population is not my normal. My body doesn't process anything normally, I don't absorb things normally, nothing, and that's some my old psychiatrist was firm about, he totally believed me and was absolutely fascinated by it. Anyways. 

The GI doctor in a very nice, but matter of fact way, said he has no idea and he can't help me. He said he's ruled out pretty much everything. 

Apparently, being constipated and then having the worst diarrhea of your life, both of which make leaving the house an absolute nightmare, is normal. Abdominal pain almost every day, sometimes so bad that you have to lay down and do breathing techniques like you would if you were in labor, is normal. Being so nauseous out of no where, throwing up for no reason, having no appetite and being unable to it, is all normal. 

Primary Care: I had my physical, I went over literally ever issue and of course, she has no idea either. We did learn that when Endocrinology took me off all of my vitamin D supplements, I was right, and my numbers are in the single digits. *sigh* So now I'm taking my own supplements and he can go ahead and yell at me when I see him in March, too. But I had my mammogram, the boobs are good, I was referred to pelvic floor therapy, which I see this week, and then I was referred to the University of Minnesota for GI. 

Oh, but don't get excited. I cannot go there physically, it is virtual only, but because I live in Wisconsin and they are not licensed outside of Minnesota, that's too bad. 

I also got referred to the other hospital in town here for Neurology, and they have changed my appointment 6 times in the last week, so who knows when I'll actually see them. 

Endocrinology: It all comes down to the doctor who always insists I pee in jugs for no actual reason. There is nothing wrong with my urine output but that and my vitamin D levels are basically all he cares about. Every doctor has told me to take my list of complaints to him because they are all likely from my adrenal insufficiency and hypopituitarism not being managed correctly. I have zero faith in this doctor and honestly, I don't know what to do about it. I'm just over it. 

But you know what I do have? Kitten butts. This is George, he likes to climb around my head anytime I'm on the computer. 

He's pretty great. George and his brother, Banana, are pretty great. I don't know if you know this, but having a kitten cuddle up on you and purr very loudly is great when you aren't feeling so hot. It's been a mood lifter for sure. 

CT scan from hell.

I don't know how to even sum up what my journey through gastroenterology has been, but you can see some of it on my Instagram where I have a few videos.  To say it has been a nightmare is an understatement. 

The last failure was pain management, and they sent me back to gastroenterology because my immense pain after injections that should eliminate pain was a signal that hey- something else is wrong with me. Thankfully, my gastroenterologist was a little more fired up at trying to figure this out and was actually kind of angry this wasn't cut and dry, which I'm 100% OK with because I am also angry and I am hoping two angry people can come up with a solution. 

We went over everything again. He decides we are going to do an unbelievable amount of lab work to rule out IBS and Crohn's for good. He's positive it isn't either of those but he definitively wants them ruled out. He said I was going to get an abdominal CT done, easy peasy. It's the nausea though that is a hang up for him because nausea doesn't mean a stomach issue. Nausea is a weird thing that is a symptom of everything. Just because you're feeling like you're going to barf in the middle of Target doesn't mean something is up with your digestive system. A lot of the time it can be a neurological thing, so if my labs are alright and my CT scan is alright, HE is going to order an MRI of my brain and we are going to hope that we see something different in it from my MRI from 2018. 

That's where I'm at: I am actively hoping for something glaringly obvious to be glowing on a screen saying I'M THE PROBLEM because at this point I really just need to know what the hell is going on. I mean, am I dying? Do I have cancer? Is it something I can fight/fix? Is it something I take medication for? Special diet? Am I going to do die in six months, because if so I'd like to know so I can plan it out. I mean, these are all the things going through my head as I wait for my labs. 

Spoiler: my labs were mostly fine. Just a couple of things were slightly low but nothing that signals something really going wrong. So my next hope was the CT scan. 

**** STOP HERE IF YOU GET GROSSED OUT BY STUFF. SERIOUSLY, TMI ALERT.****

I did that on Friday and everyone told me it is like a 5 minute thing, which.... technically, the scan itself WAS a 5 minute thing. The scheduler said I had to be there 90 minutes before to "get set up" which, alright. I figured I would bring a book or something. 

Imagine my shock when the lady comes out with this beverage and a straw and says she'll be back in 20 minutes. Alright, weird but I can do this. The drink itself isn't the worst. It really was like flat Sprite that never had fizz and not sugary at all but more... salty? It really reminded me of the glucose drink when you're pregnant. Here I thought I was done with that horror but nope. 

I got it done in 20 minutes and thought THANK GOD I'M DONE just as the lady is coming out with another one. 

Then she informs me I actually have to drink three of them and I get 20 minutes per bottle. 

You guys. I am not someone who can eat or drink things I don't like, I really struggle. I actually managed to get all three down and the others in the waiting room were whispering "chug it" as motivation but I barely got it down. That last sip I thought for sure was going to be thrown up. 

A more pressing issue was my bowels. They said I could pee (which thank god) and I ran for my life and I had never peed that much in my life. Never. Not only did I pee but I realized that, oh yay, I now am going to have a bout of uncontrollable diarrhea. Isn't this grand? This is exactly why I don't eat/drink much at all outside of my house. Or if I know I won't be going home right after, my intestines cannot be trusted. 

Once I feel like I'll be good for a little while, I go back in just as they are calling me. I go in for my scan, they run an IV so they can do contrast which, alright. I don't know what it is about the techs that do scans but they cannot do IV's on me and this guy tried hard but my arm looks like I'm an intravenous drug user right now. Also, some kind of liquid got sprayed all over my sweatshirt and it's in the wash and I hope it came out otherwise I'm going to be angry, it's new and my new favorite. Anyways. We do the scan and I can feel my bowels waging war and I'm getting legitimately nervous. He tells me the contrast will make me feel like I've peed my pants but nobody ever has and in my head I'm wondering how many people have crapped their pants in here because I really don't want to be the first. 

By the time the scan is done (I did not crap my pants), I literally RAN for the bathroom and spent the next 45 MINUTES typing a strongly worded email over the patient portal to my gastroenterologist that he needs to freaking warn someone that these drinks are basically giant laxatives and MAYBE you should have told me to buy an adult diaper or bring a towel, or SOMETHING. 

After I felt somewhat alright, I go out to my car where again, I wonder if I should go back into the bathroom or try driving and I just want to go home so I decided I would speed home. 

That turns out to be a terrible plan because guess what? Construction. There is a construction project beginning and four lanes of traffic merging into one at the end of the work day on the freeway. 

I actually thought about what my plan would be if I really couldn't hold it, do I get out and just... hope I don't end up on the news? I mean, WHAT WOULD YOU DO? 

After almost 30 minutes barely moving, I get to the Wisconsin exit and literally haul ass. I think I blew a stop sign, for sure a red light, I drove like I stole the car. I got home and I barely made it to the bathroom. And I really mean BARELY. Fast forward twenty minutes of losing my bowels and I go down to get into my pajamas, throw clothes into the wash, and again.... diarrhea. This continues for hours. Oh, but then about two hours into being home I start (wait for it) vomiting! 

Take a guess how great vomiting up flat Sprite is- I'll wait. 

Spoiler: it is awful. It is as awful as you can imagine anything but combine it with diarrhea at the same time. 

This is when I write my second strongly worded email over patient portal because by this point I am angry. I can't remember being this angry in awhile. 

I give up around 8 p.m. and decide the diarrhea is down to like once an hour so I'm going to try to go to bed because now I'm just exhausted. Also, keep in mind that I have Sheehan's Syndrome and secondary adrenal insufficiency so if I start throwing up or have diarrhea I need to take more of my medication because I could easily go into an adrenal crisis and that's bad. So I take more meds and go to bed, hoping I don't crap in the bed. 

I made it through the night but all day Saturday I felt absolutely awful. I was nauseous and I hadn't had stomach pain that bad since the day I had my gall bladder removed. The best part is I got the best call from my doctor's assistant who kind of chuckled at my emails (she is familiar with me, we can laugh together) but then tells me it is usually the IV or the drink, and if it is the drink you only need one. 

ONE, you guys. 

One. 

I had three. 

THREE. 

On the bright side, all of my insides were really expanded or whatever so there is no reason they can't see stuff, right? 

As of right now I have no other information from the scan, but cross your fingers something glaring is on there, OK? I know that sounds odd, but I really need to know what it is because living with pain and nausea all day every day is a bit much at this point.