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August 15, 2013 / Ang

Today’s little talk is about today.

I still need to address some topics that I decided to talk about later, but for now we’ll just update about life instead of having a deep talk, ‘k?

Last night I tie-dyed for Saturday night’s dance. I am SO excited! And then immediately after I went to curl up with my blanket in my super comfy clothing my best friend decided to text about meeting at the diner, and after the diner we went and spent hours at Walmart because that amuses him. I had every intention of rinsing my tie-dye last night but I was asleep before 3:30 surprisingly. (Again, so excited – I actually slept for more than six hours too!)

When I woke up for the final time this morning I wound up watching a tv show that I missed on Tuesday just because I could, really. But also because I wasn’t quite feeling awake enough to REALLY start my day yet. Afterward I rinsed out my tie-dye (the shirt looks awesome, the leggings didn’t hold the design sadly – but they’re still an awesome blue!). This led to the urge to post a status or text someone or SOMETHING saying, “SMURF ALERT!” Unfortunately, I resisted this urge so until now no one got to share in my hilarity.

After hanging my tie-dye up to dry I went to the gym. Seriously! When the autonomic neurologist gave dancing the nod of approval I went, “So I’m going to start working out again then.” I didn’t actually SAY this, I just thought it to myself. I’m hoping it helps to keep my knees in line (literally and behaviorally). I don’t really know how to rehab the other problematic joints, though. If anyone is hypermobile out there and went through PT to learn the normal ranges of motion for your joints and how to strengthen ligaments to avoid more pain and damage please feel free to share! I survived the gym! And I even started to sweat a little – which is really abnormal for me. I’m not sure if I should be excited that I can indeed sweat or concerned that I started to sweat “running” (4 mph) for 15 minutes considering that I danced for almost an hour and a half straight the other day and didn’t sweat then. And my heart rate seemed reasonable for the “running,” it was averaging around 180. I’m just sad that apparently the weight loss range is way lower than where my heart rate tends to stabilize while exercising.

Today was also my doctor’s appointment with one of the doctors vying for my PCP title (I go to a family practice and I happen to love the LPN and another doctor most). I like this doctor, honest – he gets all overprotective of me, spends insane amounts of time reviewing things, etc. And I think part of the overprotective streak is that he has a daughter who has similar issues. I think it’s cute when he insists that I’m small sometimes. But I was really confused about why he was demanding to see me.

It turns out that until I was already in the office this afternoon my paperwork from Dr. Browning STILL wasn’t in my chart. And even after it was he said that he didn’t notice the list of blood work that she wanted pulled in the note, so he had to go by my visit summary paperwork. That was slightly frustrating. As was the entire hour (or more) that I sat in my exam room waiting for him to come see me. Apparently we were supposed to review my chart. All I could think was, “Same diagnoses as the last time I was here. Different medications though. What is there to talk about?” Apparently it wasn’t in my chart that I had been taken off of the topamax because I wasn’t doing well with side effects and he got on me going, “That’s something I need to know!” So, well, now he knows. But he brought up my appointment with my LPN at the office last week and asked how the reflux was doing, so I had to admit to him that it wasn’t going so well. I still feel the same for the most part a week after starting it (and I was told I should be feeling better in 3-5 days). I told him then that I already set up an appointment with my GI, partially because Dr. Browning suggested it may be a good idea to get checked for GP. He then said exactly what I was thinking after researching the Levsin – “The Levsin might be adding to this situation because it relaxes those muscles that apparently go overboard in your digestive tract unmedicated.” We’ll see what the GI has to say about this situation I guess. My digestive tract and its health should really be in his hands – it’s just hard to get an appointment to see him sometimes. I’m almost afraid to go off of the Levsin entirely – I’ve been getting used to not being sick, just nauseated, on a daily basis. I even ate chicken tacos (admittedly without most of the spicy stuff – but I think there was pepper!) and didn’t get sick. Pepper usually makes me hate myself! I can’t decide if it’s worth going off of it to see if that helps what I’ve been describing as a leaden feeling in my stomach every time I eat (no matter what I eat) or not.

My doctor got nervous about how everything is going and upped my reflux medication and admitted that it’s ridiculously high compared to what they usually use. I’m now on 40 mg twice daily versus the daily dose I was supposed to take. He wants to make sure that I’m not actually having gallbladder issues, though, because I get random stabs of pain sometimes. He was pushing over on the right and seemed almost disappointed that it wasn’t hurting as much as my poor stomach did when he was near it. Seriously, I ate a fricking banana – there’s no way that should have been making me feel sick, but it was. And when he pressed on my rib cage pretty much directly above my stomach it was tender and I was sad that the pressure made my breath catch. I’m not sure what, if anything, that’s indicative of. But I’m pretty sure I’m not entirely okay with my stomach being tender – something just seems weird about it.

SO, in addition to the ten tests Cleveland wanted (which by the way – turned into a fiasco), he wound up ordering some other things. He wants me to get a gallbladder sonogram done next week, and he apparently ordered some blood tests that would help to show digestive stuff? It’s hard to understand him sometimes. I certainly understood him (and had to refrain from laughing) when he was criticizing Cleveland for not just sending an order for the blood work with me rather than asking that he orders it and when he said, “Really? That’s not a very accurate reflection of that level – I’m ordering another test on top of it that’s better,” while doing so. I LOVE that he gets uppity sometimes; I think because it makes him seem more human (and definitely more relatable as I’m pretty snarky at times).

By the way, fun fact: “relatable” was labeled as something misspelled until I added it to the dictionary (after double-checking that it was correct by googling it). Silly Chrome.

Random addition that may seem out of place (sorry, too tired to find the perfect places for this information): My heart rate even laying down was 104 – he didn’t seem too pleased with that, but he acknowledged that since it did go down when I laid back instead of sitting where it was at 122 that it must be something to do with the orthostatic nature and left it go. That’s when we had the “Well a beta blocker might help but you have asthma and low blood pressure” conversation (again). I’m a little annoyed with the fact that it seems like I can’t handle anything that will help. Apparently my blood pressure was slightly reasonable, though 111/70. WOO reasonable blood pressure! There was something else that I wanted to mention but I’m forgetting it. Potassium maybe? Yeah, I’m staying on that. OH! The special test has something to do with muscle disease. I didn’t catch the name of the condition he thinks it tests for.

I got home, had dinner, and tried to edit a paper for a friend of mine. I think I started drifting off while doing so, though. I know I started getting tired. It was a little frustrating to me because I was so excited to be helpful but I didn’t get through the entire thing. 😦 At least I was helpful for part of it, though!

I’m not sure if I overdid it by going to the gym, overdid it by spending three hours at the doctor’s office, or if this is normal exhaustion for me just hitting at an inconvenient time. Maybe it’s part of the after eating exhaustion I always go through. I’ll just have to go through a similar day tomorrow (minus the office visit) and see if it happens again. I’m really hoping that I can keep up with my visits to the gym, especially because I want to help make apple sauce and blue noms tomorrow! I don’t have time for early onset exhaustion!

I’m just glad that I somehow manage to push through things to seem “normal,” sometimes, though and I’m really hoping tomorrow can be one of those days. And Saturday! More apple sauce making and then dance! I have to have energy and show off how adorably overexcited I was about blue day (although at least I’m only planning on using a blue hair ribbon not dying my hair blue like one of my friends – so maybe I’m not going THAT overboard).

Wherever you are, whoever you are, I hope that your weekend goes as well as I’m planning on mine to (my body had better listen).

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