Tuesday, December 5, 2017

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. 

Wednesday, September 13, 2017

I can't do this...

Only day three and I haven't left on time yet. Three migraines, three IBS attacks, one big fat breakdown complete with ugly cry tonight and one on the first day. Things that shouldn't have happened with my class did, and my computers, which were all in perfect working order when I left in the summer, half were not working when I returned. I have no idea why. I literally reinstalled every single one and personally tested them myself before I left so they would be perfectly ready to go when I came in.

Some of the other teachers who wanted to use computers this week didn't come and check to make sure they were working, so of course that became my emergency. Yes, I am tech support but that does not put more hours in my day. I still only have 24, and I still have to go to staff meetings, and I can't suddenly whip up the power to be in three places at once. People don't read emails I send, but instead come to ask me for information I've already sent. I want to be patient, but at the same time while I'm trying to reinstall computers who decided to take a crap in MY room over the summer (in a class completely dedicated to computers, where I did make sure they were working before I left for the summer so had a very fair assumption that they would be working when I returned) I'm being torn away to fix other people's computers too.

What we need is tech help to open school, but we don't get much of that.

I'm not sure how much longer I can do this, run a business, and try to figure out how to keep a house from being condemned, find something I can eat that doesn't keep me doubled over in pain, and not kill one husband and six dogs. I just hate how sometimes I just feel like once the school year starts I have so few moments of happiness because it's just run run run, go go go and take my one day a week to sleep in on Sunday and then feel guilty if I'm not "doing" something.

I haven't exercised yet this week because I can't get home on time, but I did get in acupuncture yesterday and that 45 minutes with needles in my belly felt amazing.

Sorry to bitch but I am so fucking exhausted. I hate how everything was so good until my brain broke and now I can't keep up with what I used to do, but everyone still expects me to, including me. No choice. I've been so stressed out leading up to school and I even reached out to a support group and no one replied.

I want to apologize for having a pity party but I'm not going to. Goddamn it I'm tired. I'm tired of not sleeping (although last night I did first time this week). I'm tired of coming home and wanting to sleep. I'm tired of making dinner while Roy watches TV, even though maybe it's fair because I used to do that while he made dinner. I'm tired of feeling like I'm being targeted at work by one of our administrators, which has never EVER happened to me in my 23 years of teaching. (Someone else pointed it out to me, and now that I see it, I see it and it makes me angry because it's impacting the kids more than me and it's not right, small minded cunt faced bitch.)

All I want out of life is to leave a legacy, but I couldn't have kids so I teach. Now I'm coming to the end of my career. I can feel it. What will I be then? Pointless I guess. I can't set new goals, it feels like, because everything is up in this stupid limbo. If I stop working, we're poor. If I keep working, I'm so exhausted I can't enjoy life except during vacations. Then I resent the fact that this is it, enjoy these few days you have because the dark days come back. Don't get me wrong, I find JOY in my job, but by the end of the day I am so completely exhausted there is nothing left for me, for my husband, for my friends. That's not right.

I just feel lost because I don't know how to be this person. I'm either super go getter or nothing and I don't want to be nothing, but I can't be who I was before. I don't know how to find that in between state because that in between state just feels boring to me. I don't want to be boring. I might as well not even be.

Saturday, September 2, 2017

Worried about MCM

So excited! I booked us an AirBNB for MCM!! It’s right in the heart of DC. I was reading the course map and can’t wait!!!

But at the same time, I am super worried. I haven’t run a long run since last month...well a few weeks ago and that was 13 miles. All due to these IBS like symptoms. I just got in from running eight miles. We are a month out from this marathon and I am not ready! I haven’t been this undertrained for a marathon ever.

I don’t know how to fuel because right now I’m still on the low FODMAP diet. I don’ t know how to carbo load because right now I’m eating like I’m anorexic, and I’m not trying to be funny. Because I’ve had such a bad reaction to food the last three months every time I eat, I am afraid to eat so I find I will make food and then not eat it. Or I’ll eat just 1/4 of it because I’m afraid too much will cause issues.

I’m excited to go to DC, but what will I eat there? I know this is what all people who deal with this go through at first, and I will get it sorted out, but it sure does cause initial anxiety!  As if the brain pain wasn’t bad enough!

On a good note, I did just have a pretty good eight mile run. I used some of the gummy bears I made. I took two pieces before I left and right now I have no stomach upset, just a gnawing (which I think is the typical munchies). These are made with GG#4 clarified budder (so fanceeeeeee). No psychoactive properties at all, and about 30 minutes in a I felt good. I’ll take them earlier next week.

So hey, that kind of makes me feel a little better about MCM! Maybe I’ll try a 15-16 miler tomorrow!

Tuesday, August 29, 2017

Sometimes I HATE being a woman

I woke up this morning determined to get some more exercise in today. We did kayak yesterday, which was good and I wanted to hike today. However Roy needed to take his mom to see her sister, and I have a dinner date tonight, so I decided to go ahead and get a run in. I wasn’t feeling great, so I medicated to eat breakfast. To explain, with this current situation I often have no appetite which means I will go without eating all day. Yesterday I ate breakfast, lunch and that was it. Before bed I felt like I should eat something, tried 1/3 of a banana but after one bite felt like throwing up. So this morning I woke up with no energy, feeling nauseated. I decided I was having nothing of this, so I took one hit of White Rhino. Within 15 minutes I was hungry so I had my one cup of cheerios, cheated with half a ripe peach (it came in our CSA box, which I should cancel now because I can’t eat most of it) and I didn’t want to just throw it away, and coffee with coconut milk creamer. I felt much better so saddled Flik up for a run.

I decided that since it was mid-morning I would head out for a run on the new Ebey Waterfront Trail. I haven’t been out there alone since we rehomed Pogie. One of the reasons we took her in was because I needed a larger dog for safety. Even though Flik will protect me, the truth is he is not intimidating. He will bite someone coming for me, but a swift kick could really hurt him. A larger dog makes someone think twice.

So I head down and I’m relieved to see that there is trail work being done in the area where there are usually indigent people sleeping, using drugs and alcohol, and sometimes doing other things. Yay! That makes me feel safer. As I’m running I see another runner ahead of me with a dog off leash. It’s a big dog, but my hope is that he’s going to stay far enough ahead of me that he’ll turn and see me with enough time to recall his dog (hoping he has good recall) and leash him.

I notice, though, that the gap is closing and he’s not wearing running gear. Then he pulls off the trail and I hope to just run past him, as I run past, I notice he’s urinating and then the dog comes running at us. I’m trying to keep Flik from attacking the dog, who really does seem friendly enough and just wants to say hi (but Flik is not always dog friendly and I don’t want him to get hurt). That’s when I realize this isn’t a runner, or someone out for a walk, but an older man who is obviously also indigent.

Now don’t get me wrong. I am not automatically afraid of indigent people. In fact, I have a big heart for them. He did not act in any way like he wanted to hurt me. He was startled (probably because he was holding his dick) and he apologized and told me he was jogging. I acted pretty tough (I felt) and was nice and just told him my dog was not friendly, and it was fine.

But it wasn’t. It scared me. It made me realize that as a woman runner, I am not safe running alone out there. I love that trail and because I am a woman and even though I can run, even though I lift weights, if a man wanted to hurt me Flik wouldn’t be able to do much. I tried to run off to put as much distance between us and that man as I could and push my fear away, but my insides turned to liquid, of course my digestive issues came up and I started cramping, feeling nauseaous, and finally had to stop and walk. I kind of walked/jogged for fear of him catching up to me, but I was so afraid I’d -well- mess myself because of how my insides felt. I realized that if he was a bad man, I had run myself to a dead end.

Blessedly about ten minutes later a police officer on a bike came by. I saw him and just started saying “Thank you Jesus. Thank you! Thank you!” Under my breath. Then you know how sometimes when a crisis is over and you held it together and suddenly you’re not holding it any more? Tears sprung to my eyes and I had an asthma attack. I get exercise induced asthma VERY rarely (like maybe once a year) and FUN here it came! So I stopped to walk and regulate my breathing. The officer rode down to the end of the trail and I am thinking, “Do I flag him down? Do I not? Am I overreacting?” It calmed enough that I was able to continue by the time he got back, but I did sit for 20 minutes to calm everything before I ran again. I knew Flik would tell me if anyone was coming and hell, I could jump into the slough if someone came, or over the barrier and run into the neighborhood through water (tide was out) carrying him if I had to.

God dammit it just isn’t fair that women have to worry about going places because we have a few men in this society that can’t control themselves around women. I miss Pogie and the protection and camaraderie I shared with her. I miss feeling safe. I feel like now I can’t run down there alone and while I love to run with friends, I also sometimes need to be in my own headspace. I used to run trials alone with Wiley and because he looked like a red German shepherd, no one bothered me. We were so in sync. I could take him out on a summer morning, or weekend, or break and we’d go run for hours. Roy never worried because he know I had Wiles with me to protect me. Now I just feel like a weak, sitting duck. Being so weak right now doesn’t help either. I’m down to 116 this morning, which most people would think is “yay” but that’s actually 3 pounds since Friday. Not yay.

On the good front, I actually felt really good on the run, and my symptoms left me until the last mile. I did have some butt clenching time on the way back but oh well. I feel like I’ll get that in control. I’m still feeling sad, but glad I got the run in. Flik was too! He’s such a good boy and I love running with him. Too bad he isn’t like 50 pounds heavier!

Monday, August 28, 2017

I wish

...a lot of things in my life. One of them is that I wish I kept up with this blog more. I wish I had wonderful, witty and motivating things to say. In real life, I’m actually very motivating. I am a personal trainer and running coach and I help people feel good about themselves.

Unfortunately I do not feel very good about myself lately. It’s not a “I hate myself thing” at all. I don’t hate myself thing. I’ve just not felt good for a long time. It’s the head, but it’s more than the head.

In 2003 I had a Whipple Procedure to remove a cancerous (pre-cancerous, it was in-situ) tumor from my pancreas. Since then I’ve had on again off again digestive issues that have been annoying and painful but manageable. I realize looking back that it’s been getting worse over the last two years with a lot of issues that are embarrassing that people who deal with these kinds of issues will relate to. I’ve struggled to run long distances with severe stomach cramps and diarrhea. I’ve had problems fueling on my long runs. Stuff I used to be able to eat without issue suddenly causes problems.

In mid-May or so I had an attack, as I do, of stomach issues...bloating, cramping, stomach pain, nausea (two different types of pain), diarrhea, loss of appetite. When I get this, every time I eat I’ll feel better but then within five minutes I’ll start having symptoms. Usually these go away within 2-3 days but this time it didn’t. At first it was annoying, but I could ignore it. But as days turned into weeks and weeks into months it got worse and worse. I started losing weight and not wanting to eat. I went from five meals a day (small meals) to three to two to one.

In August I finally had a colonoscopy and endoscopy. I was hoping that they’d find something and if not, at least having the procedure would “reset” things (like a cleanse, although I do not necessarily believe in them) and I’d feel better. Not only did they not find anything at all, but it didn’t reset anything. In fact, it’s only been worse.

I’ve lost 12 pounds since May. My exercise has gone from daily to none because I’m so weak. Okay, I am still trying to get something in if I can. I did kayak today but was sad when, after a single mile I had to turn back because I was exhausted.

At first I was handling it with marijuana, which helps the symptoms quite a bit. But they’ve gotten to the point where it soothes them but doesn’t take them away. It helps with appetite but I’m starting to get afraid of food because even if it doesn’t hurt now it will tomorrow.

I have started a low FODMAP diet. FODMAPs are short chained carbohydrates that most people don’t absorb well, and some don’t absorb at all. If you don’t absorb them, they ferment in your large intestine and cause symptoms of IBS and other intestinal issues. I am actually starting to feel better but it feels like 2 steps forward 2 steps back and I’m not sure if I’m doing it right. I ate something yesterday or the day before that reacted with me, so I’ve had two no fun days. However, the day before yesterday I felt good enough to go for a run and that was AWESOME!

Other things this summer...one of my dogs tried to kill another dog. We had to rehome the killer Dog. Ugh. I feel like one of those people who always has a sad story to tell, but the fact is, August has sucked. Not “My house is underwater in Houston” sucks, but “It’s not been the best month” sucks. I miss Pogie so much. I don’t blame her. She’s a dog and for some reason she just was set off by Lucy and I blame myself. We did the right thing by rehoming her but I love her and I miss her, and even typing this tears me up. Lucy is fine. She is going to live and acts like nothing ever happened. She has a huge scar from her surgery, and we have an empty bank account (literally), but payday is Thursday and it’s only money. Money can’t buy you love, but it can pay to save your dog’s life and puppy kisses are like love so there.

We did make the most of not having money, though. We’ve had an awesome month despite that issue and money has come out of the woodwork when we’ve needed it, Praise the Lord.

Head has been better in August than in July, when the first from BC were really impacting it. The stomach and intestinal cramps can send it soaring, but now that they’re a little better they don’t seem to be setting it off as bad.

By the way, the second procedure did not work at all on my brain. It was very disappointing. So for now, I’m not going to do it again. There is a new supplement I will be taking once payday comes called Bosswellia and there is also some new pain thing she wants me to try. It has a ton of good reviews and I feel like if it doesn’t work for me, it probably will for Roy! So that’s hopeful for him. There is also something that is not yet FDA approved for my brain pain but it is for Cluster Headaches. I tried it in the office and it did give me relief. Dr. M feels it will be available within six months to a year.

So there are some hopeful things on the horizon.

Tuesday, May 23, 2017

I'm sad

I'm sad because my head hurts and I'm so tired of it. I don't want to keep trying to find a cure for it. I want to quit. I want to stop being in pain. I want to stop spending money on this. I want to live a quiet and happy life, well maybe not quiet. I want my old life back where we did fun things and went places and explored and I never worried about pain. I don't deserve this. I worked so hard to be healthy and this is what I got for it?

I know no one deserves pain and I know I'm not handling it graciously. I still don't understand the lesson 5.5 years later. Why did this happen to me? What purpose did it serve? What lesson is there in it? What do I take away from this experience? How is it helping others? How does it work through me to give to others?

I don't know where to go from here and I have no one to talk to about it. I feel so alone.

Thursday, May 18, 2017

Five Weeks Post SPG Radio Frequency Ablation

So tomorrow is the second side procedure. I'm not looking forward to it At All because it hurts so much. I know it will only be about half hour, but just thinking about it is spiking my current headache. I can do it, though.

So how are things five weeks post-hence?

Deep Breath.

It actually took me about three weeks to say out loud that I don't think the first procedure worked very well at all. I told Roy and just cried. Then a week later I shared with a few friends. I saw a little relief, definitely, so I don't think it was a complete failure. But did I see the improvement I thought I'd see?

Nope.

Not even close.

Most of the time my headache is the same as it always was. Maybe once a week it'll be worse on the left than the right. My suspicion is that since our weather has been so bad lately (literally changing at least once a day, often two or three times and weather change hits me hardest) that the right probably IS a little better but it's hard to tell with quick spikes when the pain level goes quickly from say a level 4 to a level 6. I think on better days I'm not really focusing on a slight pain relief on the right and when it does increase so much, it kind of hits me so hard that at that point if one side is only a little better, it's not enough to make a difference in that scenario.

So why am I doing the second side? I guess my hope is that either that side will be better or more receptive (maybe they missed the nerve or that is like a super nerve), or more likely the correlation of the two improvements together will be more than additive. Maybe both together will signal a greater feeling of relief than trying to add a 4 headache to a 6 headache and expecting to feel any dramatic sense of pain relief. After all, that really is still 75% of my original pain level. Wow, actually typing that out makes me feel better! Only a 25% reduction of pain makes a little more sense because that would be really hard to feel most of the time, if you think about it. Pain is hard to quantify sometimes. It's like you know when you feel it and it HURTS, and you know when you can ignore it, but if you think about it "Yeah, it's still there".

So here is hoping for better results tomorrow.