The Emotional Journey of Pain

Posted on March 12, 2012 by Cristina

It’s painful to be laid off under extremely challenging circumstances, and to know that the pay and insurance I’ve enjoyed the last 3 1/2 years is ending very soon.

It’s painful to keep applying and applying and applying, have interviews on a regular basis, but not have a new job yet.

It’s painful to have purchased a house a year ago (which is a stressful process in and of itself), only to be trying to sell it now since between the two of us, we just can’t keep it up.

It’s painful that the house hasn’t sold yet, with the aforementioned job ending.

It’s painful to know that my husband feels better in the Northwest, but that we don’t have jobs there yet (and, for that matter, an apartment).

With all of these, there are HUGE timing issues.

Yet, all this looks like nothing when I put it next to my cousin being diagnosed with a rare form of leukemia (in January) and my mom’s cousin (same side of the family) having just been diagnosed with ovarian cancer this week.

This combination of events has really pulled the carpet out from under me. I have questioned so many of the things I’ve learned and taken for granted over the years. I’ve had a tough time returning calls and e-mails, preferring instead to try to hide until it’s all over. People I care about who care a lot about me ask me questions I can’t answer.

I’ve been very fortunate in my choice of spouse. He’s been wonderful, supportive and sweet, and we’ve gotten to know each other a lot better. We both have great parents.

I have the chance to recreate myself, to start over, to re-evaluate my boundaries and values. It’s interesting, scary, saddening and exciting. That’s just for starters, and in the last 60 seconds.

I wish I could take my magic wand and heal the cancer patients. I wish I could tap my husband’s head with that magic wand and cure his headaches. I wish I could make the pain go away and settle my life and emotions.

Instead, I think and pray, think and pray, and think some more. I do sudoku. I read. (The Hunger Games, in Spanish, if you’re curious.) I think and pray some more. I start redefining who I am, what I value, and what my boundaries are. Sometimes I’m able to take several steps forward, and sometimes I slip several more back. I weigh pros and cons, and then I question the measure.

It’s hard, but I’m growing. I still can’t answer any questions, but I know there’s a plan, and I know the pieces will fall into place someday. Hopefully that day will be soon, but it’s not in my hands. Not really. I can apply for jobs and apply for jobs, but thinking and praying is about all I can do after that.

To those who care about us and have helped us, thank you. To all of you who read my blog, thank you. Your love, prayers and thoughts are felt and appreciated.

NaBloPoMo: Star Trek and Migraines

Posted on November 10, 2011 by Cristina

Today’s prompt is to talk about how we envision health activism in the future, and I’m taking this topic and dedicating it to my husband.

I have a confession: I like both Star Trek and Star Wars. Make what judgments you will, but I thoroughly enjoy both of them, for completely different reasons. Always have. (Except Star Wars, Episodes I, II and III. Those I can do without.)

My husband has had a perma-migraine for the last two and a half years or so. The pain will get worse or get better, but it’s always there. It affects his life and work, and affects us as a couple.

It’s difficult, as his wife, to watch. There are so many things he used to be able to do that he can’t. There are other things that he can still do but are a lot harder. We’ve become professional at being last-minute. There are events we would really like to go to, and we’ll try to make it, but we may end up having to bail. Those who spend a lot of time around us know that it’s nothing personal.

He’s seeing the best neurologist/neuropthalmologist in the region, and they’re working together to try to figure it out, but they’re not there yet. It’s tough to watch him go through test after test, try medication after medication (and in different combinations), without something really providing significant relief.

Circling back to Star Trek, I’ve always loved their ability to almost instantly heal essentially any malady that finds itself in the Sick Bay in mere minutes. You know someone is really sick or injured when it takes longer than that.

I would love someday for someone to be able to point a small, hand-held device at my husband’s head, run it the length of his head a few times, and say, “Okay! You’re good!” and no more headaches. Even if he had to go in once a month, but then have 30 pain-free days? I’d love it.

Beverly Crusher…we’re waiting for you!! Any time now…

NaBloPoMo: Darth Vader, Office Space and Fatigue

Posted on November 7, 2011 by Cristina

One of my favorite movies in the world is Office Space, and I also love Star Wars, so I love this picture. It’s a combination of Darth Vader (obviously) and the boss, Bill Lumbergh. (My husband calls him Darth Lumbergh.)

Exhibit #2 – Bill Lumbergh

For those of you who haven’t seen Office Space, it’s making fun of office stereotypes before the TV show The Office came around. You have the main character, Peter, who’s stuck in a dead end job and finally comes to terms with how unhappy he is. You have the random, somewhat crazy co-workers, the egotistical, but utterly useless boss that you just want to punch in the face (see Exhibit #2), and the annoyingly cheery ladies who will not leave you alone if they think your day won’t be happy without them.

Life with essentially any chronic illness is tough. I’ve been very lucky in that I’ve been able to push myself through work, even when I’m not feeling well. Some days are better than others, but some days I just feel like crap, and it’s taking all the energy I have to be at work and just sit at my desk. This fatigue does not mean that I’m coming down with something….it just is. It can be a result of a great many things, and I haven’t even figured it out myself yet. I usually don’t feel like explaining it to people, despite their good intentions and desire to help. I don’t want to be told that I “have a case of the Mondays.” Just give me that look that says you appreciate how much I do for you, and that you know that it’s not always easy, and I’ll be over the moon. People who don’t have this level of fatigue can’t truly appreciate how grueling it can be to sit at a desk for eight hours a day, but that’s okay — I hope you never have to know. It’s very frustrating, though, when I’m doing all I can, and somebody jumps on my case about something small. It makes me want to throw in the towel, because I already suspect that I’m not good enough.

The way I get around this is by choosing to slow down, on a more macro level. Life, generally, continues to speed up. I’m teaching myself to slow down, to get as close to 8 hours of sleep a night as possible, to eat good, whole food meaningfully, and to come to terms with the fact that I can only do so much in a day.

This is horribly old-fashioned, but slowing down is what helps me keep going when I just want to quit. I remember that this feeling will pass, and that maybe I need to get a bit more sleep and few more nutrients in my body, and I’ll be feeling better. It’s a reminder that my body is talking to me, and that I’m starting to speed up and ignore my needs. When I slow down again and treat myself gently, I’m able to get some energy back, and I’m able to be more patient and loving.

Changing the way I think about this hasn’t been easy, but I’m stronger than I was, and I’m getting even stronger. Be kind to yourself, if you have a chronic illness, and be kind to others if you’re lucky enough not to. Maybe we just should all be kinder to each other and a little more willing to give the benefit of the doubt.

Happy Monday!

NaBloPoMo: Celiac Disease, food allergies, gastroparesis & perma-migraine

Posted on November 5, 2011 by Cristina

Having Celiac Disease, food allergies, gastroparesis and my husband’s perma-migraine has changed my life.

– Medicine is a combination of both Art and Science. Many people in Medicine really want to help people, but we don’t know everything! There are many areas of specialization, and no-one is perfect. My health is my responsibility, so I have to take care of me, even if that means switching doctors (though I’ve been personally very lucky in this respect). Doctors don’t know every single answer, so I can’t expect them to just fix me.

– Everyone’s situation is personal. We all have our own health issues, and we can only do what we can do, regardless of what others want from us. My sensitivity to gluten is different from my co-worker’s down the hall. Some people are less sensitive to gluten, some are more. I can understand how that becomes confusing for friends who are trying to keep it straight, but just because Susie down the street can eat ______, that doesn’t mean that I can by default.

– You can only do what you can do. My husband and I don’t take many trips. It seems that the perma-migraine weakens his immune system quite a bit, because he’s gotten sick after the last two return flights. We don’t drive much, because having to pay attention to the road, and the light coming in does a number on the perma-migraine, even if he’s wearing his dark, wrap-around glasses. For me car trips are a little scary because I never know when my stomach is all of a sudden …. not going to be cooperative, which can be a problem when one is on a long stretch of road with nary a bathroom in sight. Sometimes we have to bow out of events early, or not even go, depending on how we’re feeling. We essentially tell people when we’re invited that we’d love to go….if we’re feeling well. Sometimes we don’t know if we’re going to be able to make it to something until an hour beforehand. This also means that we don’t buy expensive tickets to things. That way it’s less disappointing if/when we end up not feeling well enough to go.

– We are always re-evaluating our priorities. We were just talking about this tonight. Many people aspire to visit Italy or France or wherever. Europe is pretty much awesome about gluten-free stuff, but I have the other food allergies, too! And seeing all those sightsoutside? Yeah, no. Not good for the perma-migraine. Why spend all the money to get ourselves over there, only to have Matt frustrated about not being able to tour, and me frustrated about all the fabulous food that I wouldn’t be able to eat? Granted, if we moved there for some (awesome) reason, I’d figure it out, but travelling and having to deal with that just wouldn’t be worth it for me. Realizing that is a big deal. We have to re-evaluate what’s important to us, and move down that path.

– People are a lot more interested and caring than I gave them credit. We both often feel very self-conscious about our health issues. As I mentioned in my last post, we long to be “normal.” I’m often afraid that people judge us, or think we’re faking, or what-have-you, but I’ve found a lot of people to be genuinely curious and sympathetic. It’s also interesting, slightly weird, and pretty cool to have people think of me when they go to the grocery store and see an increase in gluten-free foods, or when someone goes to a restaurant and finds out they have gluten-free items. I’ve had friends and family recommend my blog to people who all of a sudden are diagnosed with Celiac. (Thank you.) I’ve had two people I care a lot about mention that they changed their lives and health for the better after reading my blog, which was very touching for me. I just want to help people, so when I’m successful, I feel successful.

Taking care of one’s self is very important. We only have one body, so we have to take care of it. I hope we can all find the motivation and courage to take care of ourselves and those around us.

NaBloPoMo: Dear 18 Year Old Me

Posted on November 3, 2011 by Cristina

Dear 18 Year Old Cristina,

You know how you don’t care much for rolls at Thanksgiving, or how you don’t pick up a roll at family gatherings when there’s a meat and cheese plate? You know how you think it’s gross when Dad makes scrambled eggs and toast when Mom’s not home?

It’s because you’ll be diagnosed with Celiac Disease, and you’re allergic to eggs. (And beef, chicken, milk, bananas, carrots and corn.)

You’ll luckily be married to a really awesome guy who is very, very supportive. It’ll make life tougher, but you’ll grow in ways you can’t possibly anticipate right now, and you’ll meet some really great people who are going through the same thing.

Don’t put so much pressure on yourself, and try to enjoy the moment more. Go out on a limb and try something new, but don’t be afraid to defend yourself when you know what works for you. Don’t worry so much about what your friends think. Most of them won’t be nearly as important later on in life, and this cool thing called Social Media has yet to really take off. (It helps keep in touch.)

You know how you’re tired all the time? Even though that’s normal for you, it isn’t actually normal, so it’s a good idea to get that checked out. You’ll wish you’d figured that out at the beginning of high school, because feeling better (even though you think you feel fine now) would have made high school better and easier.

And even though night time is YOUR time, try to get as much sleep as you can. You’ll wish later that you had.

Also? You have anxiety (trust me — you do). Start now to teach yourself how to relax. It’ll curb the monumental amounts of stress I’ve been experiencing. Find the things that you like to do, and do them. Keep swing dancing. In a few years (close to ten), you’ll discover some new hobbies (like canning!) that you’ll LOVE. With passion.

Most of all, take it easy on yourself. You’re pretty dang awesome.

Love,
2011 Cristina

Gastroparesis and social issues

Posted on August 16, 2011 by Cristina

Life, for better or for worse, is about food.

We have to feed our bodies for them to keep going. We have to eat every day, usually multiple times a day. Food plays an integral part in religions and cultures, and that’s what I want to discuss in this post.

One of my recently-found Gastroparesis friends, Crystal, did a video blog post on Friday about accepting Gastroparesis. She addressed one of the harder aspects of any illness, and that is psychologically/mentally accepting that this is, in fact, (my) life. (It’s really good. You should go watch it. Seriously.)

On her Facebook post, I mentioned that even though I’ve had some practice with acceptance since being diagnosed with Celiac over two years ago, Gastroparesis has been the hardest of my three (including food allergies) to accept, and that I’m not sure why.

To divert from the Gastroparesis path for a moment, I realized on Sunday that I have not accepted all aspects of having Celiac Disease! You see, I’m a member of The Church of Jesus Christ of Latter-day Saints. As such, I take the Sacrament. The first (and most relevant to this post) part of the Sacrament is that pieces of bread, after being blessed, are passed through the Congregation. (This is similar to the Communion rite in Catholicism.) Bread + Celiac Disease = big problem. The short(er) version of the story is that I bring my own piece of bread or cracker in a sandwich bag, let the priests know where I’ll be sitting, and let them figure out which tray it should go on so that it can be passed to me. (This picture will give you a more visual idea of what I’m talking about. There are enough of these trays to have close to the right amount for the congregation. The deacons then pass them throughout the congregation.) I put it in the plastic bag to avoid cross-contamination from the trays.

This is incredibly awkward for me. Imagine this nice little tray with a big ol’ sandwich baggie with a piece of bread that looks completely different and is probably a lot bigger than the rest of the pieces. (This last Sunday, I took some biscuit coffeecake I made. Yes, it was awesome.) It stands out. Then you have moms and dads trying to keep their little kids from taking the ‘cookie’ or ‘cracker’ because it looks tastier than just the bread. If I don’t get there in time to give the priests the bread, or if someone does take my bread, or if the poor deacons get confused, then I just skip the bread and take the water. Would I rather just pretend that I don’t have Celiac? Yes. Even though what I bring is tastier, would I rather just eat the bread everyone else does? Yes. Will I still get sick if I eat just that one piece of bread? Yes. I realized that I need to accept that I will have Celiac Disease the rest of my life, and this is how it’s going to be.

Now, back to Gastroparesis. Part of the reason it’s a bigger deal than the other two is that it’s harder to manage. Cut out gluten and food allergies, and voila! I’m supposed to feel better. Gastroparesis is an every day, every meal, always-trying-to-be-aware-of-how-I-feel kind of thing. One day I can eat something, and the next day I can’t. If I eat one type of thing too often, my stomach is unhappy, and my nutrients suffer. It’s really easy to eat too much fiber, too much fat, too much food at a time, or just eat too late.

The other part is that it’s what people, generally, are the least familiar with. Food allergies have been around and pretty well-known for quite some time. Celiac, just in the couple of years since my diagnosis, has had an information explosion. LOTS of people have heard about Celiac that hadn’t before, and I run into more and more people who don’t need me to explain it to them. If people haven’t heard of Celiac, they almost certainly have seen gluten-free items at their grocery store and recognize that phrase.

This is where social situations really get sticky. It’s relatively easy now to list off the foods I can’t eat without harming myself. Well-meaning people who care about me will go to great lengths to try to eat something that “I can have.” What I often don’t feel like explaining is how I may still not be able to eat it even if it’s gluten & allergy free. If I do have a few bites to be polite and/or taste it, some people get offended that I took such a small amount, since so much of our collective American self-esteem seems to be tied up in food. A lot of people are far too polite to actually bring it up and ask, so it just ends up being awkward all around.

I’ve felt bad about this and wished and wished that I could just “go back to normal,” but life moves in one direction: forward. I’ve felt embarrassed about going to restaurants and ordering a bowl of soup while everyone else eats like the normal people they are. I’ve gotten defensive when people think that I’m just eating this way to “lose weight.”

Then recently, something clicked in my brain — that generally, I feel pretty good. My energy is nowhere near what it used to be, but it’s a whole lot better than it was on May 12, 2009 when I was diagnosed with Celiac Disease. My energy’s better now than it’s been probably in the entire last two years. I still don’t get much better than an 8 on a good day, but hey — that’s pretty good. Along with feeling good is that I’ve lost quite a bit of weight. I’m about where I was before my health tanked. In the last 10 months or so, I’ve lost about 20 pounds. Not because I was trying to, but because I’ve finally figured out (to some degree) what my body needs to be able function the most effectively. When people want to know “my secret,” I smile and tell them that hey — big surprise — when I don’t eat the stuff my body deems harmful, and when I’m taking care of my Gastroparesis (also known as not eating that much), my body remembers how to work!

I’ll end with a few things that I wish everyone knew:

* These are my personal food issues, and I cook and eat this way to take care of my body. This is not the “next great diet.” It kinds of hurts when people think it is, despite how great they think I look (which is flattering).
* If I’m at an event someone’s hosting or attending, chances are good that I just wanted to be there. That, in and of itself, is a compliment. Please don’t base how I feel about anyone in the room on what and/or how much of the food I eat. Not related. At all.
* I do not delight in being “that person” at restaurants. (Think Meg Ryan’s character in When Harry Met Sally.) It’s not because I have control issues (even though I do). These are medically diagnosed issues, not me wanting to just be high-maintenance. In fact, I hate being “that person.”
* Gastroparesis does affect my energy a great deal. I wish I could be all things to all people and attend every event, but I just can’t. (As I type, my husband is driving home from a Dominion event, and I would have liked to join him.) It doesn’t mean I don’t like whoever it is; I can only do what I can do. (Does this make me feel really old? You bet it does.)

I went on a walk tonight and realized that my life is pretty darn great in spite of all this. Realize that yours is, too, and look for the stuff that makes you happy. Life is short, ya know?

Cinderella's Pear

Gluten-Free Allergy-Free Life

Category Archives: fatigue