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 clever...is 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. 

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.

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.

Ten Days to Relief! (ihope)

It's April 11! I can't believe it's April 11! On April 21 I get to have my first SPG High Frequency Block. For some reason I always think of a radio when I type that...like they're going to implant a radio in my brain.

Frankly, I don't know what I'm typing. I have such a bad head right now. I can hardly stand it. Ondedesteron is on board but hasn't done anything yet and I just want to die. I hope this procedure works because if it doesn't I just don't know what to do.

Why can't I just accept this is my life now and move forward? I have a Facebook friend named Rico who had an aneurysm 13 years ago. He has headaches all day every day too and he's the most pleasant man I know. Not that I'm not a nice person, but he seems like he's accepted his life and I just can't.

I was seeing a therapist for awhile and that really helped, but she moved into a different situation. If the treatment doesn't work, I'll seek out another therapist.

I'm afraid the procedure won't work. I'm also afraid it will work. I want it to work. I really do, but it will change my life in a really good way and that scares me because then I have to remember how I lived before. That's super exciting, but scary at the same time.

But I'm really afraid if I get my hopes up and it doesn't work...even typing this makes me get a huge lump in my throat, I will be devastated. If it doesn't work, I don't think there's another option and then I will be the one saying "I've been living with this pain for 13 years".

If I make it that long...and this is where I say it isn't a cry for help, and it isn't right this minute, but I don't know how I'll handle facing a lifetime of this pain. It's just been so bad lately...so constant and unrelenting.

Training with Pain

I am slowly coming to accept/fear/realize that I might be living with chronic pain for the rest of my life. I wish I could clearly communicate how much this has changed my life. I know chronic pain changes EVERY life, but of course I only have my life.

It's summer and my usual summer routine for the past 9 years or so has been; get up early and go for a run or teach a bootcamp, then go for a run. Eat breakfast and then saddle up the bike and ride 25 miles to go see a movie and have lunch. Later in the afternoon we might kayak for an hour or so, or I'll meet someone for a second run. Two or three mornings a week I'd head to the lake before the crowds and swim a mile. That was my life. I loved that life! LOVED it! We lived and laughed and I just felt so free. Why? Because for many years prior to me getting my life together in 2002, I was obese and those things were only dreams.

Now I get up to head to bootcamp because when I planned my summer schedule, I thought I'd be rid of the headaches. I sit in the parking lot praying that no one shows on a day with a bad headache. If they don't I go home and either go back to bed, or go for a run if the head isn't bad. If I go back to bed I spend the day beating myself up for not going out. It isn't a lack of desire, it's that exhausting round of "How bad is my head? If I run, it's going to hurt more. Well what do I have to do today? Can I do the run and then chill and let the pain subside? It doesn't mean we don't kayak or bike, but it's one or the other, not both.

I think that because people see me doing things like teaching bootcamp and training fitness clients, they think it must not be that bad. I worry they think I'm 'whining' about it when I'm not. I am truly trying to hold my shit together long enough so that I can just get through the hour. Today I trained a client and had to stop my own demonstrations a few times to "monitor" but what was really happening is that so much pain was getting in the way of what I was doing, it was stop or fall down.

Today was a very rare summer evening session where no one showed up, and I hate to say I was glad, but I was. I got new glasses this morning and they took my headache from a "about what I deal with daily 4-5 level" to 11. It was so bad that I was in the garden store and I kept having to stop to keep from throwing up. Now that is NOT like me. It finally hit me that it might be the new glasses, and when I swapped them out it went down from 11 to about 7 which is better, but still is just craptastic. The rest of the day was just a cloud of pain.

I worry if I accept that this is it that I will either fall into a depression or I will stop trying. I know that I have the ability to make that choice, but I worry that if I say "Okay, this is it..." that I will let it define me. Until my brain bled, I was someone who was often called the Energizer Bunny. If you asked someone about me, they'd laugh and say I was crazy! I'd run marathons for fun, and my goals kept getting bigger every year. People who don't work out would accuse me of having "exercise bulimia" because they could not wrap their brains around someone who loves playing outside more than a 7 year old with a new bike. If I accept that chronic pain is going to be a part of my life, does that re-define me? I want to be known as the crazy, motivating coach who treats everyone like rock stars and makes them think they can do amazing things!

I just don't know. It's like there is no handbook for how to handle life when it changes dramatically in some fashion, but it is not something others can see. If I had an amputation, or a wasting disease, people would know and maybe I'd be able to see it and accept the difference. Now I look in the mirror and I see the same old me I've always seen with a tiny bit more muffin top than I'd like. But the inside isn't that person any more. The inside is scared and unsure and stops to think "Can I commit to doing that? What if my head is over the top that day?"

So I did a workout today but I didn't run and it's really bothering me, but the idea of getting my noggin a bouncin' up and down makes me nauseous. I want to go to bed, but I don't want to give into it and let the pain tell me how to live my life.

Okay, maybe I'm not to acceptance quite yet...

Started out as a good day, but...

...then about 10 a.m. I got a searing headache in the back of my head. I was helping a student and wanted to just sit down and close my eyes. Hate when they come on like that. I miss the old me. Yesterday I got home, did some housework, had dinner, and then went to bed. No run. No time with my husband. Just bed. I wish my neurologist would understand that these aren't just "Ow I have a headache" headaches. I don't know if I minimize it. He just doesn't seem to get that I need some relief and not just pre-treatments that don't work (Amitriptyline). Sure on good days when the headache is light, I get a lot done, I go for runs, I teach bootcamp classes. That makes it seem like "Well it's not too bad if she can do that, right?" The truth is, too many days I am in bed all day. I've missed so much work that now I pay for every day I'm out (no more sick leave so I have to pay my own benefits and receive no pay on days I'm out). I'm just trying to make it through the last day of school with no more days off, so Roy drives me some days. Unfortunately today I didn't feel too bad, so I didn't have him drive me. :(

I am not this person who whines, cancels plans, feels "sick", talks about medications and treatments. I have specifically worked HARD to ensure that my body does not sustain damage due to poor diet and lack of exercise. I am all about being proactive and taking control of my health, but I can't do that any more...at least not right now.

Some days I think "Surely this will end at some point, right?" After all, prior to the subarachnoid hemorrhage I had next to NO headaches. I was rarely ever sick. If I took sick leave it was most likely a personal day. Then on January 28 that all changed. The neurosurgeon said the headaches would go away within 4-6 weeks. Then when I was passed on to a neurologist because the neurosurgeon does not specialize in non-surgical treatments he kept saying "I still think they're just going to go away."

He isn't saying that any more.

It's just so damned frustrating. What if this is my life? I feel like "Well, then you need to learn to live with it and move forward" but damn it all to hell I do not WANT to learn to live with it! It is not fair that I had a brain hemorrhage. I did everything right. I am willing to work hard and to put the time and energy into resolving this. It is just maddening for this control-freak not to have any control.

I Want Normal Back

On May 2 I had botox treatments to help with the headaches and this week I thought it was working. I can't tell you how exciting that was. I knew it was not going to take all the headaches away, but the hope was that it was going to mean the intensity was a lot worse.

Monday we had one of those "If you don't like the weather, wait 30 seconds and it will change" days. We had wind storms, hail, torrential downpours, sun, thunder, lightning. Normally a day like that would send me through the roof, but it didn't. I had a headache, but it wasn't horrible and in fact I came home and ran, I taught bootcamp...just a great day.

Then Tuesday another great day. Hardly any headache. I felt SO good. I had dinner with friends, went home and took the dogs on a HARD run, just was on top of the world. Wednesday morning I actually said out loud, "I think it might be working!" Eek! So happy!

But what goes up, must come down. I suffered through the last half of the day. I monitored bootcamp on pain meds, and held my 5k class. I came home and crashed.

Today is worse. I am so defeated. I just feel like I will never ever be normal again. I should be on top of the world. We have tickets to the SIFF and the world premiere of Much Ado About Nothing. We will be watching Nathan Fillion and Joss Whedon walk the carpet. I have been so excited about this, but all I want to do is head to the ER and get a shot to make the pain go away. It Hurts So Bad.

Wow...I'm listening to a TV show on my iPad and a lady just said, "I want normal back."

You said it, sister. I want normal back.