Friday, August 28, 2015

My Complex Relationship With Food is About to Get More Complex

Let me start by saying, I like food. I do. I even like cooking when my pain isn't out of control. I understand my body needs the nutrition and calories to function. I'm totally on board with eating healthy, natural foods.

But I've reached a point where I want to be done with it - all of it. I'm spending far too much time and energy on food stuff between grocery shopping, meal planning, meal preparations, dishes and worrying about getting enough calories, having food in my stomach for certain pills and eating healthy. There is no end. Food should be consumed at least 3 times every single day.

I'm so sick and tired of all the rigmarole. And it's about to get worse.

See, my relationship with food is quite complex.
- I'm sort of a picky eater in that there are lots of foods I won't eat for various reasons that I won't bore you with.
- I'm nauseous all the time and that often interferes with my ability to eat large quantities.
- My body and my mind love eating all kinds of healthy foods but healthy foods don't have enough calories for me to maintain my weight PLUS I have a limited amount of energy to spend on eating so I need my food to be as calorically dense as possible.
- I HATE the taste of salt. I can't eat any dish if I can taste the salt so restaurant meals and frozen dinners are almost always off the table.
- I live with chronic pain so there are days when preparing, consuming and cleaning up a meal is just not possible. I don't have enough good stand-by options to fill in the blanks 3 times a day on all the high pain days.
- I need my diet to be varied. I get bored with foods if I don't have enough variety. I'm constantly trying to come up with new options but it's hard to keep them flavorful, healthy and high enough in calories to maintain my weight, harder still as I'm trying to gain weight.
- One of many reasons why it's hard for me to travel is because I'm a vegetarian with a list of foods I don't eat. Most restaurants are out of the question because the food is almost always over salted and they don't have meat-free options outside of french fries and steamed broccoli. I can't maintain my weight only eating side dishes for any length of time. Even staying at someones house can be challenging because most people don't eat the way I do. PLUS, my appetite struggles when I'm super stressed and out of my routine - the hallmarks of traveling with my chronic pain issues.

Basically, I'm so sick of it all that I wish someone would invent a meal pill. A complete, balanced meal with all the necessary calories in a single pill. No cooking, no dishes, no worry, no time, no energy. Just pop a pill 3 times a day and be done with it. When I think about how much that would help me

And here is where it gets worse. You may remember I attempted to cut wheat out of my diet earlier this year. It ended up not being successful because I wasn't able to find a good replacement for pasta. Within a few weeks it had become so complicated to try and figure out the calories and still enjoy food enough to eat that I gave up. In light of the increasing abdominal pain and other GI symptoms my doc is recommending that I try to eliminate wheat from my diet. He thinks it could have a big impact on some of my symptoms.

I explained to him that I attempted to do this before and why it failed. He set me up with his nurse practitioner who has experience with these sorts of elimination diets, saying that she could help me figure this out. I met with her a couple days ago and have since been trying to digest her suggestions.

When it comes down to it, my meeting with her was not very helpful. During our conversation she kept forgetting that I'm a vegetarian and then when I would remind her she would begin worrying about my nutrition instead of the wheat thing. I guess she's one of those people who wrongly thinks that consuming meat is the only way to get enough nutrition. She kept telling me to go to Whole Foods and buy more fruit - as if that had anything to do with anything. Besides, the Whole Foods around here don't have the best produce so I don't know what she was thinking.

Then she kept making suggestions that would cut my calories and I would point out that I needed to make sure that my replacements would provide at least as much calories as I had before. So then she would talk about frozen meals and I would explain that I can't do that because of the high salt content. And the cycle would start again. Anyway, all she really did was give me a print out with websites and books about going gluten free - that's not even what I'm trying to do.


I do still think I should go ahead and give the wheat-free thing another shot. The additional pains and such are problematic enough at this point to warrant the effort. But I'm sort of on my own for trying to figure it out and honestly I don't know if I can do it. I'm already super fatigued of all the fuss and hassle surrounding food so the thought of trying to figure out how to replace all the wheat I eat with every single meal and snack feels impossible.

Even if I'm successful I feel like this will be a big complication in my already complicated life. It will make eating out even harder than it is now. It will make all family functions harder because they always center around food and without meat or wheat there will be nothing I can eat at our gatherings. Traveling will be harder. All of this is on top of the extensive list of things I have to do or avoid doing to manage my chronic migraines and fibromyalgia.

Of course, if it helped me to feel better my daily quality of life would improve, which would be worth all the hassle. Just another unwanted change. They kind of pile on, don't they?

Wednesday, August 26, 2015

Whimsy Wednesday

It's been a while since I've given you a clip from Curb Your Enthusiasm - too long as far as I'm concerned. Here is a great one with Larry David calling out a guy who hasn't parked within the lines.

Have a great day!

Tuesday, August 25, 2015

2 Simple Reasons To Love American Ninja Warrior

Are you guys watching America Ninja Warrior? I love this show. If you've never seen it before, it's a series of obstacle courses, increasing in difficulty from super hard to near impossible. The course is open to adult men and women, 21 years of age and older, from all walks of life. It's a test of skill and strength (physical and mental).

All summer, my Monday nights are spent on the couch watching. That's how it'll be until NBC decides to stop airing it. Hopefully that won't happen any time soon.

So why do I love Ninja Warrior so much? Well, there are 2 main reasons:

1. These obstacle course are incredibly difficult. The fact that people are able to do them at all is remarkable. Some of the competitors are professional athletes but most are not. They are parents, professionals, students, regular people who want to challenge themselves. It's fun to watch as the courses get more difficult and the number of competitors dwindles until just a handful are left. I'm amazed at what human being are physically capable of doing, each and every episode.

2. The level of support and camaraderie among the competitors is impressive and unmatched in the sporting world. A big part of the reason why I don't like watching professional sports is because of the culture of poor sportsmanship. I don't think there is anything wrong with being competitive but these days it can be hard to find competition and sportsmanship together. Ninja Warrior doesn't have any trash talking, mind games or the like. Instead the competitors are rooting for one another, sincerely pulling for and supporting each other. When someone falls, everyone is disappointed. They are good people, in a pure competition and I love that.

At this point all of the city finals are complete and those who qualified will now be competing in Las Vegas in the final 4 courses. But don't worry, if you've missed the city qualifying and finals courses you can watch them on YouTube any time. It won't take long before you're hooked too.

Thursday, August 20, 2015

The Best Laid Plans Are No Match For Chronic Pain

This is my husband's final week off before fall semester starts up. With only two short weeks between the summer session and the fall semester, we've been busy trying to get some stuff done. We had a long to-do-list for his break, longer than usual because he is taking 2 classes this fall instead of 1. 

The 2 big things on that list were, finish our Christmas card photo (we do an elaborate theme based photo every year) and finish painting the living space. 

Unfortunately, we lost most of last week to exhaustion and some pretty severe pain. We have a family function on Saturday and none of the small items on the to-do-list are done. Since this weeks is quickly slipping away, I'm starting to feel the crunch. The Christmas card will be mostly done but we still have 2 weekends worth of work to do on the painting, which obviously won't get done. 

When you live with chronic pain, plans are nothing more than hopeful wishes for what you want to do. I can work hard to arrange my schedule and be as prepared as possible but, ultimately, I never know how I'm going to feel, what craziness my body will put me through and what I'm actually going to be able to do. Just one of the many frustrating challenges we have to deal with. 

I had planned to get the painting done last spring. Then I planned to get it done this summer. Now the plan is to get it done before I put up Christmas decorations in November. But then I start thinking about all the things I had hoped to get done this fall and wonder. We'll see. 

I'm working hard to not let this frustrate me. After all, things are still getting done and we are always moving forward. Does it really matter if it's not happening at the pace I want it to? I don't believe so. Isn't it more important that we are supporting each other and finding moments to laugh and love? I do believe so. Eventually, it will all get done. 

Wednesday, August 19, 2015

Whimsy Wednesday

I'm a big fan of the show Parks and Rec. By far my favorite character is Ron Swanson. Here is a great scene for your enjoyment.

Have a great day!

The crazy part - I totally relate to this sentiment.  

Tuesday, August 18, 2015

Poor Data Collection - To Speak Up Or Not?

I'm having some new pains. Mostly upper abdominal pain with some additional generic GI symptoms. It took months before I was willing to admit that there might be a problem worth exploring and a few more months before I actually picked up the phone to make an appointment. Why? Because the thought of more doctors and more problems was more than a bit overwhelming.

But it didn't go away. In fact, it got a little worse and now I'm working with a GI doc and my OB/GYN to discover what the cause or causes are so we can treat it. It might just be a worsening of my endometriosis. Scarring can develop almost anywhere in the body and it can tug on organs and muscles causing pain and such. The treatment would be hormones and possibly outpatient laperscopic surgery to remove some of the unwanted tissue.

Before putting myself through all that we are trying to rule out other causes. To that end I was tested yesterday for an overgrowth of bacteria in my small intestines. The test measured the gases expelled as I breathe out. Completely non-invasive, which I loved. The downside, a big one for a migraineur, was in the preparations. My diet was restricted a little two days prior to the test - nothing horrible. Then one day prior I was only allowed to eat 1 slice of white bread, a white potato with nothing on it, white rice with nothing on it, and a piece of boiled meat with nothing on it (as a vegetarian this actually wasn't an option for me) and I could drink water. Then 12 hours before the test I wasn't allowed to eat or drink anything.

Being dehydrated is a migraine trigger for me, plus I don't have enough reserves to weather a day deprived of calories with ease. By about mid-day on Sunday, the lack of calories had already caught up with me and a migraine slowly crept in. At least I was able to take my rescue med and muscle relaxer before being cut off from food and drink. What a miserable day and night.

I woke incredibly hungry, aches in all my joints, a muscle spasm in my neck and completely parched. At least the migraine rescue med was still holding my head pain back. Now I just needed to get through the test - 2 1/2 hours of blowing into the machine at regular intervals.

By the time it was over I was dizzy, nauseated and my migraine was creeping back in. I basically went home, ate and crashed for about 2 hours.

Happy to be back on my regular schedule today, I've been reflecting on the procedure and am disappointed to say that the data collection was flawed so I don't have faith that the results will be accurate. I did my part, it would have been nice if the testing was done with more consistency and attention to detail. I'm not about to take the test again but I do plan to discuss the methodology with the doctor when I see him again in September.

In the moment I was tempted to point out that mistakes were being made because this was my one shot at getting accurrate results - but I didn't want to be the crazy patient telling the techs they were doing their job wrong (even though they were). That's not the kind of thing people like hearing from complete strangers. Looking back I'm still unsure how the right way to handle that would have been. What do you guys think?

Wednesday, August 12, 2015

Whimsy Wednesday

Some fun from the good folks over at Conan. I think you know where this is going.

Have a great day!

Tuesday, August 11, 2015

Dr. Office Failure

Early last week I had my annual doctor appointment. Then yesterday her office sent me an email survey to take. Normally I don't do this kind of thing but I actually wanted to give some feedback because some things had gone wrong. 

For example, the office usually sends out a postcard saying it's time to schedule my appointment. I got no card this year. Instead, one day I just remembered that it had been about a year. I called the office to schedule my appointment but all I got was a message saying that number is no longer in service. It had to be wrong. This number was for an entire OB/GYN department within one of the local hospital systems. It's not like they could have gone out of business. So I did a google search and all the listings still had my doctor at this practice and at this number. 

Determined to find my doctor and make my appointment, I did a search on the main hospital website for my doctor and found a new location and a new phone number. What the heck! I called the new number and asked if my doctor was still in practice there. While I was relieved that she was and I wouldn't have to find a new doc, I was pretty annoyed that the entire practice relocated AND changed their phone number (a totally unnecessary change in this day and age) without notifying me. I've been a patient there for 5 years for crying out loud. I think I deserved a heads up on this matter.

Then when I arrived for my appointment I was forced to fill out all the new patient information again. Something they should have sent to me by mail so I didn't have to waste 20 minutes at the office filling it out. Apparently when they relocated they lost most of their stored data. Both medical and demographic information was just gone, even though it was all computerized. I just can't for the life of my understand how that could have happened. You don't lose information stored in a computer when you relocate a computer. Plus, this is not some small private practice, it's a large practice within a major hospital system. Don't they have an IT department to handle this kind of thing?

I appreciated getting the survey and having a chance to express my frustration over how all of this was handled but when I reached the end of the survey I discovered that by submitting it I was giving them permission to use my feedback on their website along with my full name. So the only way to respond to their survey is by giving up my right to have it kept internal. 

Ummm NO! Not okay. What the hell! They wasted way too much of my time. I need them to pull it together - quickly. I really don't want to search out a new doc. Especially since my endometriosis is becoming more of a problem.

Monday, August 10, 2015

The Lift of a Smile


Was it easy? Did it take effort? Did it feel natural? Was it forced?

Did it make you feel better? Did you eyes smile with your mouth? Did you spirit join in too?

Was it your first of the day? Did it exhaust you?

Smile again.

There are times when I have to dig deep to pull off a smile - times when I fake it. Thankfully, after a while, even a fake smile can lead to a real one. With time even the eyes and spirit join it.

I love how a smile can be lifting, even if only for a few moments. Sometimes that's just what I need.

I don't know about you, but I find that when someone else smiles at me, I get a much bigger lift than from my own smile. However, between distractions and foul moods it can be hard to find people who will look at you and smile. I guess that makes it all the more wonderful when it happens.

Wednesday, August 5, 2015

Whimsy Wednesday

I've become a big fan of Chad Vader. This guy has put together all kinds of short videos that puts Darth Vader in various common Earth situations. Cracks me up - I hope it brings you a smile on this Wednesday.

Have a great day!

Monday, August 3, 2015

I Don't Want Others To Pity Me

This past June, for migraine awareness month, I did a fair amount of posting on my personal facebook page about migraines and chronic migraines. For the first time ever, I tried to make it personal and opened up about some of the symptoms I experience beyond pain and some of the ways it has effected me and my life. At the end of the month I posted some of my stats from the month, including the number of days I was in pain, the number of migraines I had and the number I am allowed to treat. June was actually a mild month so I went ahead and pointed that out as well.

My Hope
I wanted to be a little more open about my experience with chronic pain. I wanted my friends and family to get some sense of how serious and complicated migraines can be. While all of my facebook friends know I have them, very few have any concept of what this means and just how intrusive it is. I wanted to raise some awareness.

What Happened
I actually got several comments - my posts rarely get comments so this sort of took me by surprise. People were saying things like "poor you", "horrible", "I'm so sorry", "praying for you" and such. A couple also expressed appreciation for all the info, saying they had learned something. Frankly, the response from the commenters was ideal. Everyone was kind, supportive and sympathetic.

All of this to say
I felt pitied and that made me feel very uneasy. I've thought about it frequently since and still can't quite figure out why. Seems to me, feeling sorry for the pain someone else is going through (sympathy and empathy) is a natural human response. I certainly don't want my friends and family to feel indifferent or pleased about what I'm going through.

So this is what I'm thinking
-Maybe I'm confusing pity and sympathy. No, seems to me the words are pretty similar even if pity has a slightly different connotation.

-Maybe I'm actually feeling more exposed than usual. After all, I spend a good amount of effort trying to appear normal during my interactions with friends and family. I cover my tired face and eyes with make-up. I try to dress well. I smile and laugh. I relish the time I have out in the world, doing normal stuff.

-Or maybe I just want it both ways. I want people to know what my life is like so they can understand the abnormal things I do. And I want them to see me as normal because I don't want our time together to be burdened with my crap. Perhaps this makes the most sense.

I can't have it both ways. I must find a way to reconcile these opposing approaches or it will always bother me.