Please send good thoughts

So the sensor to my glucose meter is expiring in a little over an hour, but I can't replace it, even though I do have others, because Tuesday morning I have an MRI and I can't wear it (it has metal in it), and I don't want to waste a ten-day sensor for just a little over a day's time. So it's back to pricking my finger for about 36 hours. Not bad, really, in terms of the timing.

I am nervous about the MRI for a few reasons. One, I'm claustrophobic. They've given me hydroxyzine to take a little while before to take the edge off. Second, it looks like I'll have to lie flat for about 45-60 minutes. I sleep with a CPAP. I'm a little iffy on breathing while flat for that length of time. I may ask if they can put the fan on. Third, it's an MRI/elastography of the abdomen to measure the pliability, of lack thereof,  of my liver. Back on the summer, I had an ultrasound/elastography and I had to spend some amount of the time exhaling all my breath out (in a mask) and then holding without breathing over and over, so my abdomen would be still. It made me light-headed. I'm thinking this might be the same, and that's why she didn't want to sedate me. (An open MRI was not an option, as the images would not have been clear enough). Lastly, this is to see just how damaged my liver is. I know it's enlarged. The ultrasound indicated cirrhosis due to non-alcoholic fatty liver disease. If that's the case, it's very serious. It could mean liver tumours, advanced liver disease, paracenteses (drawing fluid off the abdomen that had built up with a long needle), encephalopathy from a build up of toxins (think loopy as someone dealing with dementia--my mom once put a lighter in the microwave, and my stepfather caught it before she turned it on...she'd thought she was making soup), even an eventual wait for a transplant. If it isn't full-blown cirrhosis, but a milder stage, that's great, and there are things I can do to reverse our stabilise it. I've already lost 25 lbs., although that was mostly from being put on another diuretic. That's one thing I can do, along with lifestyle changes and exercise. So it's good to know exactly what we're dealing with. But I'm nervous and a little scared. My mom died of this, and it was terrible. If you wouldn't mind, send some positive thoughts my way Thanks!

Argh!!!

 I'm pretty technically-savvy.  I may not be able to do much with the smaller components on a laptop or build a whole computer, but I can change out periphery device cards and upgrade memory.  I know a lot of Windows and Android tricks, and I'm proficient with both.  I used to program in three older computer languages, so I know the basics of coding. And I've always been able to troubleshoot things to do with my computer or phone, eventually.

Enter the Amazon Fire.  This tablet (the latest generation of the Fire 10, which is the 11th generation) is so good in so many ways, and I'm actually able to use it as a min-computer because I have software compatible with Office and a keyboard.  I did the game notes entirely on it yesterday because my roommate was using my laptop (as a kind of desktop, as all sorts of things are plugged into that). But one trouble I have had is the headphone jack.  Right after I got my Fire this summer, the headphones I'd bought specifically for it that were wired, didn't work when I tried them.  I tried another pair, with nothing. I tried all the things I'd found on Google, including a factory reset, to no avail. I contacted Amazon and they couldn't help.  It hadn't even been a month, so they replaced it.

I usually use wireless Bluetooth headphones anyway, but sometimes I don't want to use up the battery, such as on Sunday mornings, when the wireless ones are better for my chores.  So I tried wired ones again, and lo, on the replacement tablet, it was the same.  The headphones didn't work. I tried everything short of a factory reset to no avail. As a last ditch effort, I tried a pair of headphones that I'd never used before, one that came with my last phone, the Samsung S7 (I'd preferred the ones from the S5, until they'd finally died, and the S20 has a USB-C jack instead of the 3.5 mm one).  I plugged in those, so frustrated with how my morning was going...and they worked, unlike two other headphones.  I checked the one set for any kittly nibbling and didn't find any.  I guess they were just somehow incompatible, even though they work on other devices.  So sending the other back didn't need to happen.

So everything works now. Now to determine why my Bluetooth earbuds are not pairing with each other (i.e. only the right one works).  But that is for another day.

I know it's been awhile, but here's an update

Had my long-awaited liver consult today at the University of Kentucky. I took my roommate (who is also my medical surrogate) with me because I had a lot of trepidation and I knew he would ask any questions I forgot to). He said I was his emotional support animal. :) Met the nurse practitioner, who took a detailed history and was rather impressed by my ability as a medical historian regarding my personal health history, my medical terminology understanding, my (theoretical) knowledge of nutrition (I have a lot of that, it's the putting it into practice I have trouble with), and my willingness to work on my health.

I don't have definitive answers yet [they took a lot of specific bloodwork designed to give a better idea of my liver function, as opposed to just the enzymes--shout out to Miss Benita in the lab at UK Kentucky Clinic, who literally took my blood with the barest sensation of a needle stick] I need to have an MRI to get a better sense of the damage, as at this point it could be fatty liver disease, fibrosis, or Nonalcoholic steatohepatitis [NASH].  the latter is eventually what killed my mother, although she went through all the stages first.   I was a little reluctant to do an MRI because I do hate closed-in spaces and they didn't really want to sedate me, and open MRIs are not as good and often have to repeated anyway on a regular scanner, but she agreed to give me something to take the edge off and we'd go from there.  Since I hadn't eaten or drunk anything, there was another test they could have run today, but the MRI would be better, she said.  She is also sending me to a consult with an obesity doctor at UK who works with patients by helping keep them accountable for changes they're making in their lives.  She didn't think going to a dietician would really help, as I know what I'm supposed to do, but coming up with a plan and sticking to it by having to report to someone would be beneficial.  She did not give me the 'lose 30% of your body weight' talk.  She said it would help if I lost 10%, which for me is a little over 30 lbs, although even getting down the 25 I've gained over the last year would help.  I eat very healthy at home, rarely get take away or go out to eat, so my main nemesis is empty sweets from the vending machine, so that's an angle to work on.

They also got me set up on the patient portal so I could message her and get lab results, some of which have already come in.  I see her  in three months,  after the MRI and obesity consult are completed.  I feel better about where I am now.  We had a very detailed discussion (down to taking small amounts of acetaminophen vs. the large amount of ibuprofen I've been taking for my musculoskeletal pain (she'd prefer the former to protect my kidneys  even though acetaminophen isn't usually considered the best for the liver.  We have a plan in place.  It's a start.

I've been processing some news rather than writing about it

For years I have been concerned that my bloodwork always shows my liver enzymes as very slightly elevated, because my mother had the same thing happen to her. It eventually progressed to fatty liver disease secondary to diabetes, then NASH Syndrome (non-alcoholic steatohepatitis), then cirrhosis, then to liver cancer, and then to liver failure, and it finally killed her.  It was terrible. 

I'd expressed this concern for some time with my PCP, but it was only a very little elevated, and so we took a wait-and-see tack, but I finally said something about my concerns to my endocrinologist. She ordered labs and sure enough, the values were higher than they should be. So Tuesday before last I had two liver tests: a regular liver ultrasound and an elastography, the latter of which measures the elasticity or rigidity of the liver. It wasn't a particularly painful test, it's just an ultrasound that I had to fast for, but it was difficult in that you had to (for the elastography) let out all your breath and then not breathe for awhile before letting in some air again. I was a little dizzy afterwards.

The next day, the results showed up on my patient portal and I read them. A couple of things were easy to understand. My liver was enlarged and I had asymptomatic gallstones. There was a mention of the wave result being correlated to a Metavir score of F4. That I knew nothing about, so being a former librarian, I looked it up, being congnizant that you shouldn't panic based on Google results. But the Metavir Scale goes from F0-F4. F0 is a normal liver. F1-F3 are various degrees of fibrosis in the liver. F4 is consistent with cirrhosis. That was a bit to make me think about panicking. I've had diabetes for aver 20 years with obesity and other risk factors. I thought there might be some damage. But cirrhosis is not good. Not at all. Fibrosis can be reversed in some cases, particularly in the early stages, as the liver has a great deal of resilency, but cirrhosis is another matter entirely, and can lead to liver cancer and liver failure.

I called my doctor's office to speak to her. Her nurse wasn't there that day, but they'd said they'd give her the message. The next day I hadn't heard anything, so I called back and spoke with the nurse. I explained what the score was supposed to mean and the nurse was like, oh, I didn't know that, let me get the doctor to call you right back, which she did. The F4 score is certainly concerning. She said she wanted to refer me to a specialist at the University of Kentucky, as they were the best ones in the area for this and if I went somewhere else, I'd probably wind up there anyway (I think she meant if it came to a transplant, as they're the ones who do that). So that was definitely hard news.

Fast forward to this Thursday and I hadn't heard anything about the appointment. I have the Informed Delivery from the US Postal Service that emails you scans of the mail you're getting that day and saw that I was getting something from my endocrinologist's office. I asked my roommate to open it in case it was the referral. It was just a copy of the results plus the intent to refer, so I went ahead and called her office and the referral clerk called me back. I do have an appointment with the University of Kentucky's Gastroenterology office (apparently that's where Hepatology goes under), but after reviewing my records the first available appointment was October 8th, when I'll be seeing a doctorate-level nurse practitioner. So maybe they didn't think I was as urgent as my endocrinologist's office thought. Or maybe, being a major univeristy teaching hospital, they just don't have the availability. I don't really want to make any assumptions. So it looks like I won't really know anything about my condition until then.  I have to admit, I'm pretty disappointed and more than a little scared.

I know that it often takes big things to scare us into making even small changes.  The best thing for fatty liver is to lose about 30% of your body weight.  For me, that's about 100 lbs.  Yeah, that's a lot.  I saw my rheumatologist the next day and told him about what was going on.  He asked me what I planned to do.  I told him I was cutting out the processed food in the vending machines.  I was trying to find ways to walk a bit each day beyond going to and from work (I get about 6200 steps in on average.  I'd like to slowly increase that to 8000.)  As far as losing weight, 100 lbs is too much to tackle.  My plan is to try for 15-20 lb. weight loss and then add another goal after that, taking it smaller bites.  He thought that was good, and he offered to get me to a nutritionist if my endocrinologist didn't.  I appreciate it.

I haven't eaten anything from the vending machines in over a week. I ordered and tried out some walking poles to help with my balance so I can walk around the neighbourhood, and some walking shoes are being delivered today (my New Balance work shoes, which look like black trainers, are actually steel-toed, and not flexible enough).  I went and spent $100 on things like large bags of nuts, raisins, craisins, jars of sunflower seeds, cheese I can cube, baked crackers, yoghurt, etc., so I have snacks and breakfast at work.  Here's hoping this helps.

UPDATE: My appointment has been pushed back to November 5th! Arrrgghhhh!

Feeling a little better than last week

I had about a two week period in a funk, maybe longer, where I was depressed, irritable, and somewhat labile. It's unlike me at my norm. My lamotrigine had been upped about a year ago for some lability and more hypomanic issues. I was stable for years on my original dose, but my mood is still subject to my Bipolar II disorder. I spoke with my psychiatrist on Tuesday and he upped my mood stabiliser, lamotrigine, as well as my ADHD medicine, as I've been having trouble focusing lately. That puts me at the highest dose of Strattera, a non-stimulant, non-addictive medicine for ADHD. I'd recently walked off with a sink running at work (which half our sinks are automatic, but still), had a minor fender bender, and lots of little issues that were adding up to a bigger one. I've only taken it for a couple days (the pharmacy had to order it), but I think it's helping. I was able to up the lamotrigine immediately, and I feel a little better and think that it will help. Anyway, that's why I haven't been writing.

Not your typical Friday night

Our plans were put on hold tonight so I listened to music, trying out some new headphones I have, and for whatever reason, I started listening to a lot of older Linkin Park, mainly the albums Metora and Hybrid Theory.  I remembered that Chester Bennington's death had been around this time of the year, and I checked, it was the 20th of July 2017. Hard to believe it's been four years.  It's a shame; he was very talented, and had a beautiful voice (when he was singing, as opposed to the occasional screaming, but you could never say he didn't put emotion into his work).  That's what first appealed to me about them--Mike Shinoda's speaking and Chester Bennington singing, their voices intertwining.  I think it was 'In the End' that I first heard them.  There's a dark aspect to their music, emotional, raw, and full of depression and hurt.  I spent so much of my early life feeling exactly those things--I was clinically depressed from much of my childhood and teens all through my 30s.  I felt trapped in circumstances in my early life, then wound up going from that to an emotionally abusive marriage where I walked on eggshells for a six-year relationship that culminated in my wedding and then finally getting my voice and leaving six months into the fiasco that was.  Then there were years of trying to rebuild my life, or rather build it, because I'd always been a mirror of what people wanted me to be, rather than my own person. And once I stopped doing that, I was much happier.  So you can see why their music appeals.  (It's also why I like Simon & Garfunkel and Ed Sheeran, who often sing songs that are beautiful and light musically, but really quite depressive if you look at the lyrics.  Simon & Garfunkel have suicide through several songs, and Ed Sheeran sings about drugs, prostitution, miscarriages, and all sorts of 'negative' things, but in a way that makes him sound happy.)  Somehow I get all those.  Linkin Park is a rawer kind of music, where the music itself expresses the pain, not just the lyrics.

I don't know why, even though I'm not in that place any more, I still feel comfort in this sort of music.  Most people feel depressed listening to that sort of music.  I feel more alive.  It reminds me of the demons I've conquered.  There are plenty I'm still working on, as it's a daily struggle with my brain to keep on an even keel.  Thankfully I have a good support system, a friend of over 30 years (the same one who helped me get out of that awful marriage) who still asks me hard questions I can't dodge that cuts down on lies I might tell myself, and then I can't tell you how different my life is with the right medicine.  My brain chemistry hates me, and while I sometimes wish that wasn't so, I know I need help, and there's no shame in that.  My roommate is very astute at sensing changes in my mood, and helping with my anxiety, which without medication would be crippling.

I know that's a fairly heavy post.  Sorry about that, I didn't mean to go all dark on you.  It's one reason I try to keep things upbeat here, because of that tendency. I'm feeling actually pretty decent tonight. It was a good week, I got a lot done, I feel good about myself.  But it did make me reflect on how far I've come.  If you told me at age 20 that I'd have connexions to so many people who make my life better, I'd think you were crazy. I was so alone for so long.  Thanks for being there.  You know who you all are.

Taking a bit of a break

I'm the last one at my office. It's been a very productive day, but I'm starting to run out of steam, so I was hoping giving my attention to something other than sheets of paper with codes and encounter numbers would help before going back to it.  I've requested a lot of clinical notes and I'm hoping I'll get those and can put in some more requests.  If not, I've got some paperwork to do involving putting information into two different spreadsheets.

On Monday I have an ophthalmologist visit and field of vision test in the morning, so I have parking at the hospital. Yay!  Parking days bring joy kind of like jeans day (every Friday is jeans day at work, along with certain other days throughout the year).  And then on Tuesday I have two virtual appointments shortly after work, so I'll clock out and stick around for a telehealth visit with my psychiatrist and a phone call from my health insurance care manager, which should be right after one another.  There are lots of appointments this month, and I rescheduled three just to keep it from being more than I could count on one hand.  But not all are during working hours, and I've been pretty lucky to get ones that are early or late.  I was afraid I'd be going back to a doctor with my foot yesterday.  I stretched to get something from atop the refrigerator, and being short, I overstretched, and my Achilles tendong went pop! pop! pop! It's a little sore today, but not bad, so I'm hoping I didn't do anything to it.  The older I get, I really should keep an orthopaedist on speed dial.

Okay, that was a quick 15 minutes.  Now for the final push through the work of the day.

Success!!!

(Well, I did burn my ring finger slightly because I dropped a potholder, but still....) Aren't they lovely? Now, off to bed (and yes, I turned the oven off). 

Tonight

my roommate cooked a lovely meal, we had a good time watching 'Murdoch Mysteries' during dinner (it was the one with William Shatner of all people as Mark Twain), and I've finally gotten all the dishes either washed or a load running in the dishwasher, the linens are put in the laundry, and I've got the bread in the oven. Last week's bread dough was like cake batter when it came out, and I had to put a LOT of flour in it to make it work.  This time, since it's been raining this evening, I put about 2 oz. less water in it than the normal cup.  The dough came out much better, a bit stiff, but it rolled well into the coils and it rose reasonably well.  We'll see how it comes out. I've got another 13-15 minutes left.  I really, really want to go on to bed, an I just have to go that little bit of time before putting the bread in the upper oven to cool and turning off the lower one.  Just 15 minutes.  It seems like an eternity.  So here I am, whiling the time away on the Internet.

It was a good day. I got a lot done, including some things that were on the back burner but needed to be done.

I found a raw amethyst pendant at UK on my way home, set in a silver setting.  There wasn't anyone around and it was outside, so there was no lost and found to turn it in to.  It wasn't anything expensive, just maybe sentimental.  It feels like a jangly mess whenever I hold it in my hand, so if I keep it, I definitely need to cleanse it or something.  But it is nice.  I've had things I've found and lost again like this; I think sometimes things just go through a variety of hands over their existence.

Three more minutes. Actually, I'm going to check now, as the loaves are poufier but shorter than usual.  But if I don't blog any more tonight, have a wonderful evening.

Stupidity in action

My roommate just told me he'd seen people online who contended that 'The Lord of the Rings' was racist in respect to orcs, the slathering, kill-you-dead creatures who, oh, yeah, are completely fictional.  Because there's not enough real racism to fight against, right, we have to worry about racism against imaginary people. [Sarcasm sign firmly displayed, just in case you didn't get that.]

Sigh.  Our world is becoming stupid.

We should do everything we can to fight racism in the real world. The fact that these people have lost sight of the arch of the holdoeck really saddens me.  I mean, who has time to worry about stuff like that when real people are dying?

Makes me angry.