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.

Much.

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.

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?

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 “Maybe...hospital...best...” 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. 

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!

Update on belly

Long angry frustrated rant short...a few weeks back I had a flexible sigmoidoscopy and my Pancreatic Specialist did not find that I had microscopic cholitis. I got my test results with the note, “...results are negative. If symptoms continue, or get worse. Contact my office.”

Okay, what the fuck do I have to do to get a doctor who has a little persistence? I do not expect to get House, for fucks sake, but I do expect someone to at least follow through on what they say they are going to do. On our first appointment I told him my symptoms; that I’ve been having transient symptoms since my Whipple in 2003, but that they’d ratcheted up in May. I’ve lost 20 pounds since July without trying...yeah, that’s AWESOME if you’re trying, and seriously I would by lying if I didn’t look in the mirror at times and say “Looking good in those jeans, Sweetie!” But when you aren’t trying and no matter what you eat, it goes straight through you and makes you feel like you alternately are going to throw up, or you’re being stabbed in the gut and poisoned at the same time, it’s shall we say...disconcerting.

So at our last office visit I told him three things:

1. My symptoms are better and the weight loss had seemed to slow, but not stop.
2. I was still having some symptoms every day.
3. I do not eat during the day because of those symptoms, so I’m really controlling symptoms with fasting as much as with my diet and Creon.

He had me do a test on my way out that showed that my pancreatic enzymes had fallen, even though I had Creon on board from that morning’s breakfast about 90 minutes earlier, and of course had taken it the day before at all meals. That was when he brought up EPI. However, I did not know (since it was brought up in an email) if it was a diagnosis or a “it might be” so I was confused.

In fact, I just made the mistake of eating some nuts because I’m hungry, and I can feel symptoms starting. Darn it!! No, nuts are not something I shouldn’t eat. It’s just that any food kicks off at least minor symptoms.

So does that sound like things are good? I think he hung on the first one. Better is not fixed. Better does not mean I’m satisfied. It is like, “Well it was flames but now it’s just embers.”

So I went back to my GI PA.C. Who is not a pancreatic specialist, but at least listens to me. She is a GI specialist. I’m done with doctors who don’t listen and I’m tired of pain.

So she is going to get his records, even though I always ask to have them sent to her and my doctor there (who is another “I fixed you, right?” Doctor who I don’t like going to....really I never have this attitude, but these two are just....). 

She said that if I respond to the Creon and my enzymes are where they are, that’s how they determine EPI, so I do have it. (Exocrine Pancreatic Insufficiency or the fact that my pancreas is slowly losing its ability to make digestive enzymes so that makes me sick because my body isn’t digesting its food). It isn’t fatal or anything, just uncomfortable and something I have to manage. She’s going to also see if there is anything else. She said I can take Imodium before meals when I’m out to try to head off the symptoms. I grabbed them, or thought I did, today...but it was something else. LOL. Dumbass. 

She looked at my weight, and was alarmed that I had lost 10 pounds in the month since I’d seen her. Yeah! It is alarming, isn’t it!? Looking like an extra in Coco alarms me too! Okay, it’s not THAT bad. I fall just on the line between “healthy” and “underweight” and somehow I still have back fat. 

It is so strange to feel like my life has been taken over by doctors and pain, when it used to be all I thought about and talked about outside of my teaching was running and exercise and how much it enriched and enhanced my life. Now I am so proud if I get even a two mile run in because I feel so crummy all the time. I felt like I was getting used to the brain pain because it has been almost six years. It’s not better, and in some ways it’s worse. But this EPI thing? I just don’t get it. 

Warning: Whiny rant ahead...

I don’t get it. I take such good care of myself. Not to the point of Gwyneth Paltrow steam cleaning my clam and making my own organic linens, perfect so you want to slap me, but I take care of myself. I eat mostly healthy food (Lucky Charms is a food group, so shut up) and I exercise. I lost the weight that as unhealthy. I chose a career path that was/is a path of giving/social service and as a teacher, I give my heart and soul to my kids. Just today I told three kids, individually, how much I care about his success and how I will always be there for him. I meant every single word. You can ask my best friend, who is also a former student. I have their backs in thick and thin. I work within the community through a non-profit to raise money for local people or families in need and take NO profit from it myself, ever. I don’t want riches or fame. I just wanted a simple life where I could make at least a small difference. I still have goals and ambitions I want to meet, but I have been hit with two chronic conditions that make me feel like shit most of the time and I just don’t get it. I don’t understand why. I don’t get the lesson. I don’t get what I am supposed to learn from this or how it’s supposed to mold me into the right vessel or person. I believe things happen for a reason. When I had my original tumor in my pancreas and they found it SO early so I never had to have chemo or anything, just my Whipple (which was no picnic, but still) I felt like there was a purpose...that was why I embraced health and fitness so strongly because I learned what it felt like to be so sick I literally was afraid to close my eyes to sleep at one point. I was afraid I would wake up again. 

But the brain hemorrhage and never ending headaches, confusion, frustration? Maybe it’s to give me empathy for my students who struggle. I don’t get the digestive issue. I know why it’s happened. Most people with a Whipple end up with it, but why? It just frustrates me so much. It’s so hard to accept that it’s just “sucks to be you!” And I have to suffer with feeling sick all the time when I’d rather be out running or teaching a boot camp class while someone else is perfectly happy being a complete couch potato, not taking care of his or herself, and they remain perfectly healthy. I am not saying they “deserve” it more, but I am saying that it would make more sense for a sedentary couch potato to be stricken with these illnesses, so it is hard not to feel “why me” sometimes. Not only does it keep me from doing things that enrich my life, but it is keeping me from doing things that help others, and that hurts the most.

Next year I’m sure I’ll be teaching half time, so less kids will be impacted. I’ve cut down on teaching my fitness classes and personal training one on one. I can’t handle it. As it is, I can’t handle what I do have and cry almost weekly because I’m so overwhelmed. I can’t bring myself to give it up, yet, because it was a dream of mine and I can’t let that dream die. I worked hard for it. But next year, I’ll probably have to drop that too because it’s a business that costs us money. I have goals that include, very seriously, running for public office but can I do that with two chronic conditions that can take me down at any time? I don’t know. So do I even consider it? One or the other, maybe, but both? It just feels so hopeless like I shouldn’t even bother to make plans. 

Then when I think that way I feel like “But others go all over the place and talk to Congress and shit, why can’t you be someone like that?” And I feel pressure because I’m not some Hallmark Story of Wonder Womanness running across a finish line breaking the tape, or even stumbling across the finish line, with a Nobel Prize in one hand and a perfectly brined brisket in the other. I’m just me and I’m not amazing. I’m in pain most of the time and I only want to go back to being normal me full of energy with tons of dreams left for my life that now just seem fucking impossible.