Thursday, February 1, 2018

Can I get a Teacher 504?

Yesterday I posted such a positive post, and then last night I had a BAD pancreatitis attack. Of course I had a mountain of papers to grade.

In rides Roy on his white horse to save the day. I couldn't sit, I couldn't focus, I couldn't stand. I was in so much pain. I tried EVERYTHING! I really wanted to go to the ER, but last time they gave me morphine WHICH MAKES IT WORSE! (Morphine causes spasms and I told the doctor that, but he didn't listen to me and guess caused spasms and I went from being at a level 8-9 of pain to a 15! Fucker.) Thank God he helped because I could only do adding up of things and fixing. I just could not read.

Today was better, but I didn't sleep last night of course, and I was still feeling the after effects which is pain, nausea, and severe fatigue. I also had a bad headache (about a 5-7 most of the day). I really should have stayed home today, and would have, if grades weren't due.

After school we had a staff meeting. My day ends at 2:10 and our staff meeting ended at 3:10 so fuckity fuck fuck that noise. I hate that. HATE HATE HATE! I am not hating on my administrator, because ALL FUCKING SCHOOLS DO IT! They just act like teachers are nature's prostitutes, only we just give away our time for free. Never mind I get to work at 6:40 and get paid for a 7.5 hour day, not an 8.5 hour day.

I realized as I'm literally in tears at the meeting (because of a big issue that is keeping money from my program, left by the last administrator) that after this meeting, I have another meeting to go to because I am the school tech person. Now let me remind you, I teach tech support, have worked in tech support for over 23 years now. I read tech articles every morning, and listen to tech podcasts. Oh, and I teach tech support. Part of my job is to attend fucking pointless meetings once a month, and for the last 13 years I have attended about three of them because in the first year I realized that since I teach tech support, THEY WERE A COLOSSAL WASTE OF MY TIME! I don't need to sit in a room full of giggling teachers (the females...thank you for setting females in tech back 20 years, nubs) and men who will ignore me if I have any input at all (oh and women who will talk to me like I'm a nub because they don't know me well enough to get that I know what I'm talking about). So I stopped going.

By the time I would be home, that would be a 12 hour day.

So I mean it. Can I get a 504? I have two chronic illnesses and I think it is unreasonable to expect me to work a 12 hour day, particularly when that last meeting starts a full two hours after the end of my paid time. Oh yes, I get a stipend for tech support. It's a few hundred a month and guess what, I've already burned through that. Are they going to teach me at this meeting how to fix the database for the Dental program's x-ray machine? Nope? Will they help me figure out the POS system in our restaurant? Nope? Then I don't need your meetings. Send me a synopsis.

Yeah, I do think I can spend my time better. And sorry, with the amount of time I put into tech support on my own, I don't think there is much they can teach me that I can't learn on my own when I have energy.

Besides...twelve hours. I can't do it. Sorry. That energy level is no more. I know others can, but right now, I can't. So I left. I also have a valid excuse that I had a sample to get to the lab and that could NOT wait. I arrived at 4:56 and they close at 5:00 Maybe if our staff meeting had ended on time instead of going 40 minutes long...(there is one person who will NOT fucking shut up at the meeting) I could have run it in and run back like a good little minion. But that doesn't take away the fatigue factor or the fact that it keeps me from any form of relief for my pain for 12 hours.

I think I'm going to look up 504s because honestly, I know I'm going to be disciplined for missing this meeting and I need to be prepared.

Wednesday, January 31, 2018

Feeling Better

I think, maybe, knock on virtual wood, I'm starting to get my EPI under control! I'm still having symptoms every day but they are manageable. I've even gained three pounds. Today I was 108 pounds! Part of me hates to see the scale go up, but I know it needs to. I remember having these exact SAME struggles after my Whipple. I think I was just about 100 pounds when I got out of the hospital. Oh yeah, I was HOT! No boobs. No butt. Nothing. Sexy lady!! Even so, watching the scale go up was hard, and it is now.

But what I am reminding myself is every pound means ENERGY and POWER and STRENGTH!

Still struggling a little with appetite, but I do have a small one. So that's cool. I now have to watch NOT to over-stuff myself thinking "Got to gain! Got to gain! Whee! I can eat ALL THE CANDY IN THE WORLD!"

Not that I did that.


I just finished a delicious bowl of congee, which I love. But to get started was a challenge and I could have just as easily not eaten. I find my food has to really be whiz-bang if I am going to eat it. No mindless eating for me any more, which is a good thing! That doesn't mean I don't. Roy has been bringing home too much candy and I will still put it into my mouth, but I don't really mindlessly eat otherwise.

Today I have to turn in my letter resigning half of my job for the school year next year and I'm dreading it. Part of me feels like "You should suck it up! It's going to cost money and you aren't worth that much as it is!"

But part of me says, "No amount of money is worth the exhaustion you feel 2/3 of the year!"

I feel great the first few weeks, then Fall hits and it's rough up until cold Winter weather sits in and stays cold and clear so February is usually okay. Then in comes March and out like lion and maybe I'm good in May when we get that "Look at what Summer is going to be like..." weather and then rain rain rain. So really, most of the year. Not even 2/3, more like 4/5. I've had a BAD migraine the last three days. Today is only a 6.5 so it's the best day. Yeah. You work with a level 6.5 on the pain scale and that's a good day. (Not NORMALLY a good day, but my baseline is about a 5.)

The congee helps, at least.

Thankful that it isn't this bad every day and that my digestive system is calming at least somewhat.

Sunday, January 21, 2018

When Breakfast Feels Like an Endurance Event

This is an interesting impact of my EPI right now and it’s very serious. I am sitting at breakfast at 11:39 staring at my food trying to eat, but I can’t. This week I am down to 105.4 pounds, the lowest I have weighed since probably grade school (not counting when I was recovering from the Whipple). I weighed that weight three times this week, so it’s official. I lost two pounds this week. 

I read my iPad while I’m eating breakfast, it’s one of the joys of my day. I read up on tech, politics, and sometimes catch up on Facebook. I was reading the race report of a 100 mile race from one of my friends. My goal in 2012 was to run a 100 mile race and I still had that goal up until recently. Now even eating has become an endurance event. I know it sounds silly, but it isn’t. It’s serious and sometimes I worry that it’s going to become deadly serious. While 105 pounds it’s “OMG call 911!!!” serious, it is scary when you can’t seem to gain weight or stop losing. It really is. It’s scary when you have NO appetite and you know you need to eat but eating makes you want to cry because even a bowl of cereal looks like a mountain of food.

I used to wonder how anorexia worked. How could you NOT want to eat? Now I get it. I can’t eat. It hurts to eat sometimes. It means I will, almost always (particularly in the morning) get symptoms of stomach cramps, bloating, urge to go to the bathroom (usually on the way to work, stuck in traffic), stomach pain as my body tries to digest my food with the aid of enzymes I have to take with every meal. It’s horrible. I can’t even explain how horrible it is. If you have IBS or have had stomach flu you get it. It’s like having the end of the flu all the time and being afraid to eat because it might come back.

I use medical marijuana to deal with it, to give me an appetite but it doesn’t always work and it’s not always appropriate. I can’t wake and bake every day...imagine driving to work stoned. That doen’t work. Plus, if it doesn’t work, I can’t just take more. Two puffs sometimes works and then I can eat, and won’t be impacted (stoned), but four and I am. I don’t want to be baked all the time. Edibles? Forget it. I don’t WANT to eat, so that won’t work, plus they take time to hit (about 30-60 minutes). Ain’t nobody got time for that!

When I do have natural hunger it’s amazing and odd! I literally want to drop everything and eat! I’m not kidding. It’s like “Everything stop! Tory wants to eat!” Of course I don’t do that because how rude would that be? But it’s such a strange thing. When I do feel hungry I almost want to stuff myself to try to get enough calories in to gain weight. And trust me, I do eat enough calories to gain weight but I don’t because my stupid body isn’t absorbing enough to gain. My doctors do not seem to be concerned with this factoid. I am concerned that they are not concerned and I think I need new doctors, to be honest (except my awesome naturopath who I see Friday). I’m going to ask her if she thinks I should change GI docs or maybe go to an Internist. 

So that’s what I’m dealing with right now. Outcome of this besides weight loss? I’ve had to ask other people if they’ll coach for me with my upcoming running class because sometimes even 3 miles wears me out. I have a half marathon next weekend, and I don’t think I’ll be able to do it. I’m going to start and hopefully I can finish. It’s an out and back so I’ll have to SUPER listen to my body. Yesterday I ran 3 miles and the women’s march and it sent me to bed for the rest of the day. I did have a bad head so that was part of (bad windstorm) but it started with “I need a nap” after the march. I never “need naps”. Why am I the only one who cares that this is happening to my body?

Saturday, December 30, 2017

Got in a double today!

I don’t know if I’m coming down with something or this is an outcome of my body getting used to EPI, but damn I am so exhausted tonight. I used to do two a day workouts ALL the time, and it would be five to seven miles in the morning, then a hard lifting session. 

Today I did 2.5 miles of easy run this morning. I wanted to do more, but honestly it was FREEZING and I’m going to attempt to run a half marathon tomorrow. Then later I did a 40 minute ab workout at the gym. It was a superset of seven exercises, and I did three sets. I worked it, but it wasn’t heavy lifting. The third session was rough.

I know I’ve lost muscle tone and strength. Part of it is lack of energy from lack of nutrition from the combination of lack of eating earlier, which caused the weight loss, and lack of absorption. I’m eating a lot more now, but not really gaining (although I was up a few pounds this morning). But this afternoon I am so achy I feel like I ran a marathon or I ran a marathon and I’m coming down with something.

This isn’t the first time I’ve noticed that my workouts are taking a toll on me that they shouldn’t be. I talked to my doctor about it yesterday...oh it’s been a few days. More on that in a min. She suggested I run no more than 3 miles a day in order to limit muscle breakdown and calorie burn.

So, my plan now is to take myself on as a client and work on a plan that builds my muscle without burning too many calories, since I can’t afford it. I am going to the half marathon tomorrow, but will listen to my body. It is five loops, so I can do as much or as little as my body wants to do, so I’m not going to do more than I feel I can.

So the last few days...The day after Christmas as part of my gift, Roy took us to Seattle for an overnight. It was nice! We got a room at the Hotel Theodore and didn’t do anything special; just saw a movie, had lunch together, saw the JDRF Gingerbread Houses and enjoyed each others’ company. We needed it!

The next morning we got up, went to breakfast at Top Pot and then went to the Market. For some reason I started feeling stumbly, very woozy. Not dizzy, but like heavy fatigue just took over. When I thought about it later, it was like I hit a wall during a marathon. I tried to just stay close to walls so I could grab something if I stumbled, but then I wasn’t feeling well all over so I asked Roy to hang onto me and told him I wasn’t feeling good. We started walking back towards the car, and it just kept getting worse. Suddenly I needed to sit down so I did, and it wasn’t a sit “lower myself” down, but when I let go of Roy I hit the bench so hard it hurt. I felt better so I said maybe we could go home and if I still felt bad, go to urgent care. We got up, and immediately I felt sick again. We walked, I blacked out but just for a second....happened again. Then we were standing on the street corner and I could think and see and read, but I tried to say something to Roy and couldn’t get my words out. Maybe only every 3rd or 5th word would come out and it sounded garbled and distant so I think I got out “” so that was that. We went to Swedish ER.

They got me right in. I failed the first FAST test (for stroke) but not the second. Still, they continued on as if I might have had a stroke (I hadn’t, don’t worry...but honestly the not being able to talk thing freaked me the fuck out). Within 90 minutes I felt normal, though. They wanted to keep me overnight, though, just to make sure. I was put in the Telemetry ward. They put me in a room with a nice view and, eventually, a roommate (who had chest pain, but blessedly it was not a heart attack). 

Swedish has amazing beds. I want one of their beds. When you get in it like “envelopes” you like a hug. I want that bed. 

So I was there. While there they did a zillion tests and concluded nothing. One doctor (neurologist) thought it might be dehydration (I was VERY dehydrated). Another doctor thought it was my very low blood pressure. I have BP so low that it set off the alarm every time they took it. I also had low Potassium. Plus the day before I really hadn’t eaten much. One very interesting impact of EPI, I have discovered, is that if I don’t smoke weed I generally have no appetite. So if we’re out busy I don’t even think to eat. And if I’m not hungry it’s rarely even a “I’m not hungry, but I could eat” not hungry. It’s more like, “I don’t know how I’ll react if I even smell food.” It’s made it really challenging, so I’ve honestly had to use marijuana to stimulate my appetite or I won’t eat anything after breakfast. 

So I think it was a combination of all of them. When I think back to what happened I can’t explain the slurred words, but I think my glycogen stores were depleted. Even though I had just eaten and had some coffee, I didn’t drink it all and it wasn’t enough to fill me up. It was only enough to click it up to under the E mark. Probably my blood sugar spiked with the carb breakfast (there was little fat and no protein) and then dumped. I actually had dumping syndrome when I first had the Whipple and it would feel like that...just a quick drop of feeling like complete shit. How embarrassing to tie up medical resources because I didn’t eat or drink enough, but with the verbal problems it made sense to go. 

When I got discharged they told me to follow up with my doctor, but they were adamant about it because they didn’t find the cause. (They did a lot of tests, even an Echocardiogram and had a dietitian come and talk to me.) Roy was insistent that I go in as well, and I lucked out! My doctor who is a Naturopath and an MD, is impossible to see in less than 8 weeks. She had had a cancellation for the next morning! She is amazing. So in depth and she KNOWS me. She took one look at my weight (she hasn’t seen me in over a year) and had all sorts of concerns. I had already emailed her a few concerns (I had an appointment scheduled for January), so she was already on those. She got me set up with a decent electrolyte, a protein powder to take every day, she limited my exercise (and I agree with her...shut up about tomorrow I will start with the new year), and a short term something to deal with my depression. 

She treats me like a whole person!! I am so thankful for her!

End of my workout at the gym. I petered out after 2.5 circuits, but I finished the 3rd. I can’t believe that!

My three running buddies giving me the hairy eyeball during the Magic Mile. 

Friday, December 29, 2017

Christmas was hard, but good

I am a girl who has always had trouble adjusting her expectations. I was always the one who, if someone said we would go to the park on Tuesday, it was written in stone on my heart that we would go to the park on Tuesday. If we didn’t, it was soul crushing. I try very hard, because of this, to make sure I do not make promises I do not keep, nor do I promise things lightly. I don’t think other people understand this about me. 

So because I know this about me, I tried a new thing this year. I didn’t ask for anything for Christmas. I thought if I had no expectations, I would not be disappointed. Don’t get me wrong...I am rarely disappointed in what I get. I am disappointed when I get something out of left field that isn’t what I asked for, or if somehow I end up going way too overboard, or way worse...underboard because I did not understand what we were doing for the holidays. Christmas is HUGE for me and I love the whole season, but really hate Christmas Day because time and time again, the day itself, is a big letdown. Through our 32 Christmases together often family has changed plans at the last minute, ruining our plans because hey, we don’t have kids so we can just wing it. Sure, we can, but how disrespectful. We like to make and keep plans as well and when suddenly we’re treated as if we don’t count, it’s very upsetting. Or we decided to do something and it seems like it will be so magical, and it just isn’t like the year we spent Christmas in Disneyland. Two of our favorite things together! All I could think of was that our dogs were alone (they had a pet sitter, but still...) and we weren’t with them, and all of our traditions were back here.

Well this one fizzled too, at least for me, and it’s really all my fault. I don’t know why. I guess we had decided on a budget, but I don’t remember discussing that. I can no longer claim to remember things like that because I don’t. My memory is horrible any more. I agonized over his gifts. I really did...and I thought I got him things he would like, but he kept saying he didn’t want anything, he didn’t need anything. That’s so hard for me, because to me this is an outward expression of how much I think about him, and that I saw this and thought, “I know my husband so well that I know he will enjoy this.” or it will make him laugh, or remind him of a specific event, or whatever. He loves all things Star Wars, movies, etc. so I got things that he could enjoy in his classroom and at home. 

He painted me this amazing picture of our dogs as Avengers. Unfortunately for my overly emotional brain, I had already seen it because he painted it in my classroom during our LAN party. It’s fantastic, and very romantic because our dogs mean the world to me. The other three gifts were, in my mind sans explanation, a semi-thoughtful gift, a gift that seemed more for him that I’d actually considered getting him but dismissed as too frivolous and way overpriced, and a WTF gift that felt like it was a “I need at least one more thing” gift that was close to a check out or a re-gift. 

I was crushed. I knew what the “big” one was so I chose to open the smallest gift first and it was the WTF one. I’m already in this really emotional state lately and my first gift from my husband, oh and I forgot to mention he had not put a name tag on any gift. He has never not done that, and in fact all name tags are usually really a gift that looked like it was on the sale table at Ross or maybe Goodwill. I mean I’m okay with a gift like that from a co-worker, or as a white-elephant, but it just hit me wrong. The thing that killed me, I could feel my emotions welling up but I couldn’t stop them. So I let him open a few gifts because he had 3 times as many as I did. I picked up a flat one to hide behind, and it was the semi-thoughtful gag gift. It was then the damned tears just wouldn’t stop. I couldn’t even explain it. I was literally just feeling heartbroken. It wasn’t because I didn’t “get great presents”. It was because it felt like they were such afterthoughts. Like he’d said, “Well, I got presents. Is three enough? Yeah. That should be good. I did my duty. Done.”

I hate myself sometimes. There is absolutely no truth at all to him being that kind of a husband. Sure, he has a moment, very very rarely, of being thoughtless, but I probably have 10 times those moments. Even typing this out, I can feel the emotion behind how I felt, even though the rest of the week has been a testament to the love he has for me, that we have for each other. 

I have always felt like Roy is the only one who truly loves me. I mean I get, cognitively, that other people care about me, even love me. But I truly feel like he is the only one to whom I am an important person; to whom my absence would mean something. I am feeling so much, lately, that my life has not had the importance I had hoped it would. I’m not talking about fame or infamy. I just had hoped I’d have a legacy, but that’s hard when you don’t have children. So I think Christmas scared me and flashed a “What if he DOESN’T love you???” Card at me and my insecurities all welled up to the surface. I mean on the one hand, part of me is saying, “Why should you even NEED a man to love you?” But the truth is, we all need to be needed; to feel of value to someone and I don’t always feel like I am of value to him. Yes, he loves me and he shows me that a lot. But I don’t know if he “values” me as an equal or adult. He doesn’t confide in me or tell me when he’s worried. He never asks for or takes my advice. I mean never. I don’t know. Maybe I don’t feel better now. I just need to feel better, but lately I just feel awful all the time.

It’s a great picture, but it doesn’t feel like it is for me. 
Avengers Assemble

Friday, December 15, 2017

I did it...

I told my boss I don’t think I’ll be able to work full time after this school year. She is supposed to get to HR and let me know how it works. I’m requesting half time leave of absence so I can return to my job full time if needed. I feel relieved  and sad and nervous all at the same time.

It’s a horrible head day today. The weather changed from wonderful clear cold weather to rain. Oh well. I have a party with friends tonight that I’ve been looking forward to. I had to leave work to come home early and I’ve mostly slept all afternoon. I wanted to grade papers and do stuff for the party, but it hasn’t happened. I always feel like I’m being judged when I leave early and maybe I am, but my goal for today was to not let my overactive imagination overtake my logic. Logically, I left work because my headache was a level 8 when I was moving. It would go down to a 6 if I stayed still, but it didn’t stay there. That’s not reasonable and means I have to leave. It’s crazy what we do when we have pain. I knew it was going to be bad when I got up this morning, but I wanted to tell my kids about the new Star Wars movie, and next week starts Winter break, I wanted to discuss Net Neutrality, and I thought I could get through it.

Best laid plans of mice and women, I guess!

It’s Dirty and Wet Under the Bus

I have sure felt like I’ve spent a lot of time under the bus this year and I’m really not sure I understand why. The latest was this morning (it’s my duty free lunch right now, and my goal for myself is to journal my feelings so TaDa).

History: I am tech support for our school. I also teach tech support. The following story is a large part of why I love TEACHING tech support, but do not love DOING tech support, because it is a very common scenario. 

We have many programs in our system that include specialized hardware that connects to computers that I am required to support as our on-site technician. That can make my job very challenging as I am not a full time tech. I have to do my job after or before work or on my duty-free lunch. For this I get an extra $2600 a year, or $260 a month (10 months because 9 months is a fallacy, we go two weeks into June and we come back in August and those months are, by far, my busiest tech months). I can spend multiple hours after school, particularly in June and August and that stipend is usually spent by the end of October. 

One of the programs has an X-ray machine that was able to take an x-ray in one room, but if the patient was moved into another room, they could not bring up the x-ray in that room. They could bring up the chart, but not the x-ray. Apparently “district” could not figure it out, so honestly I had my doubts I could either since I don’t know x-ray machines from Jack. I got the tech request and it was to fix it so that if an x-ray was taken in one room, the x-ray could be called up in the other. 

I went in after work one day and stayed a few extra hours, missing a pointless district tech meeting (which I got in trouble for from the district tech person) in the process, and figured out by digging through the proprietary program and its files that it was a simple matter of the directory mapping on one machine when it was set up. I can’t test the x-ray machine (not being a technician), but I did find a patient (dummy patient, I think—they do a lot of x-rays on a dummy) and confirmed that I could now bring up that file in both rooms. 

Look at my bold task above. Did I not achieve my goal? I explained, the next day, to the instructor that I was pretty sure I had accomplished the goal, but she needed to test it. I explained that all of the old x-rays that were taken in that room would need to be moved to the other folder at some point, but that since I did not know the patients or the syntax of the files, I couldn’t do it. But if she needed that done, she just needed to put in a tech request. However, I couldn’t do it without her there because we’d have to check the files together (she knows the patients, and I don’t). She said she’d let me know once the clinic opened. I went on my way, pleased that I resolved the problem and marked the job as completed. 

Fast forward to a month later and guess who was thrown under the bus for not moving files over? God damn it! Big angry letter, CCed to my boss, that I haven’t done this yet.

No tech request. Nothing. 

Of course I crawled out from under the bus, dragged her out of the seat and threw her right back under. I was nice about it. I just shared that I was a little frustrated, and pretty much laid out the issue as above (with less snarkiness, although this teacher appreciates a good snark which is part of why I love her—so don’t take this as not liking her, I do). I just hate it when it looks like I am not doing what I’m supposed to do, when I have! I also hate being put on the defensive because it comes from a point of weakness and I’d rather apologize for a mistake than defend myself from an accusation almost. If I make a mistake it’s honest. An accusation, even if it is untrue, always casts doubt. 

We all deal with people like this. I decided to not let it ruin my day. It did start my tummy churning but I deep breathed and even though I don’t necessary always feel like it’s the “be all end all” of treatments, physiologically it got more O2 to my brain and did help me calm down and feel better. It does also provide a good lesson to my kids. I won’t use it in the context that it is in, but I’ll modify it. 

This is honestly the third time this week I’ve been thrown under the bus and the scenery is getting old. First was the tech guy from district who shared with my boss how deeply concerned he is that I have missed the tech meetings this year! <insert concerned eyes here> He’s invited my director and I to a meeting to discuss it. I explained why I missed; that I have a SILT meeting that I attend that usually doesn’t go late, but did last week, and I’ve had tech jobs that were high priority (x-ray job). 

When he thanked me for explaining, my director told me that someone else at our meeting attends the same meetings and HE makes it to them, of course CCing that to the district guy. Once again, here I am under the bus. I don’t get why she’s not supportive of me or why that information had to be sent to him and couldn’t have just been sent just to me. I didn’t know this other person also attended the meetings since I am new to this committee. I pointed that out, privately, to her and also that there had been only three meetings this year; one of which was last Thursday and our meeting HAD run 45 minutes long. I didn’t know I could/should just get up and leave. Had she privately said “Did you know __ attends those meetings as well? It’s fine with me if you just get up and leave to go.” That would have been much less embarrassing. 

This is the first year the tech meetings have ever concerned anyone. I have not attended them for the last 11 years. I did the first year, but they were aimed more towards tech support in elementary schools, and training people on things we don’t use here. Most of the things were things I already knew. It was honestly a huge waste of my time and energy. I’ve attended district tech meetings since I started teaching and at Marysville they were held during the day. These are held twice a month, after work at 4:00 p.m. so I’m asked to stay an extra two hours, to attend an additional hour to two hour long meeting on a Thursday on a heavy traffic day and the likelihood of that meeting actually having anything meaningful for me is zip to none. For this I get a $260 a month stipend, AND I also have to train my staff, fix their computers, set up the AV things, run my student tech program (which is awesome), and listen to teachers bitch about a job I didn’t do that they didn’t ask me to do. So you will fucking excuse me if I am not thrilled about it!