Petrified

It's late. I'm tired but still awake.

When I'm here, I can fill my day with everyone else's problems. They seem more real anyway. From here my problems seem self-imposed and frivolous.

I spent my day doing things for other people. I'm physically exhausted but my mind is full of thoughts. It feels like I'm out of time, like I have to grow up now. Time to move forward and start taking action. No more excuses. I've made it to 32 but have nothing to show for it.

I haven't done any work in a week. My glasses were smashed tonight and this allergy medicine keeps wearing off every four hours. Wednesday marks one month until my health insurance runs out. I have so many people to thank and so much work to do. I have to get up in four hours and take care of a child and my parents.

One day soon, I'm going to wake up to find that I am 80 years old.

Stream of Consciousness

I spend every day obsessing over what I'm eating or drinking and when.  I have to find a balance between a headache and a stomachache.  Eat something in the morning, but not enough that I get sick at school or on the way there.  Then eat a little between classes and drink some water, but not enough to upset my stomach.  I'm dehydrated.  My head hurts.  I'm whining again.  Too much.

When I come home late at night, I binge.  I'm so hungry.  I know I will be in the bathroom several times, as long as I'm awake.  I can't eat vegetables or the pain will be horrible, so I eat starchy, salty things.  Crap void of nutrition which will only make me feel worse in the long run.  But at least the hunger is gone now.

A handful of vitamins and a bunch of water, which I choke down because I know there is nausea to follow.  I work late into the night because I know I will have to pay in the morning.

I sleep.  I wake up.  I go to the bathroom.  I go again.  Time to start obsessing.  I have to if I want to keep this up.  I think I'm doing a good job hiding it.  I'm always either hungry or in pain or tired because constantly fighting hunger or pain is just so damn exhausting.  It takes me longer to learn things because  my focus on my work is always secondary to what my body won't let me ignore.  I can't stop obsessing because, if I do, I will likely shit myself in public, which would be the worst outcome.  I've worked so hard to avoid it.  So far, my only victory.  Well, that and I haven't missed a single class or extra activity the school has scheduled for us.  That's something, right?  

I don't talk about it much, at least I don't think I do.  The person who matters most to me thinks I'm whiny and dramatic, possibly a hypochondriac.  I don't want anyone at school to know, I need to work in a couple of months and I don't want to be the sick person no one wants to hire.  I was quiet for a while, then I decided to feed off my illness because it feels like all I have right now, make it part of my work.  I immediately regretted making it a part of the conversation.

My mind is weak with anxiety.  I'm constantly anxious, cripplingly anxious.  I second guess every decision I make.  I'm not the same person at all as my well self.  I'm a total mess.  I have no confidence, I hate the way I look.  I scrutinize everything I say and do.  I'm so nervous about leaving the apartment that I do crazy, crazy things before I leave.  I make sure I've turned off the stove, even if I haven't used it since the night before.  Is the fridge closed?  The window locked?

I try so hard not to talk about it to my husband because I know it's boring and it gets old.  When I have to explain that I don't want a salad for dinner because it will make me too sick, I scream it at him.  Angry because he made me whine about it, prove I am a whiny person.  Then I hate myself for being weak, sick, angry, for taking it out on him.  I want to have a salad for dinner because my body craves the raw vegetables.  That's all I eat when I'm healthy.  That's all I want right now.  But, in the end, it would be a bad decision.

When I do speak about my illness, there is no shortage of advice.  "Eat rice, it will bind you up.  Take Vitamin D.  Get some rest.  You just need some exercise."  I can't explain to someone that my immune system is tearing up my digestive system.  That I don't have a bout of diarrhea, I have inflammation and ulcers in my intestines that will not allow my body to properly digest food.  Toast and bananas are not going to be easier on my stomach.  If I take a day off, I will not be able to catch up on my school work.  You can't believe I have that much school work?  Well I don't know what to tell you.  There's no way food can enter and exit my body in less than two hours?  If you say so.  They can't understand.  I wouldn't either if I didn't live this every day.    

I'm angry with myself because I haven't done enough work, my apartment is filthy, I fell because I haven't replaced the boots that have no tread left, I'm taking the wrong supplements because I haven't shopped for the right ones yet, I'm out of shape, I'm not making any money, I haven't spoken to my family enough this week, there is no food in the fridge, I'm not drinking enough water or eating the right things.  I don't even know where to start this to-do list with another, overwhelming to-do list of assignments/preparing to start a business is already on the page.  A few hours of shopping could wipe me out for the day and I won't have the energy left to finish what I need to do.  I don't look sick, I can't possibly be that weak... 

I've kept all of this up, every day, for months.   

I could just get back on Humira, but I'm getting older.  My window for having children is closing and I would rather not risk the medication.  In a few more months, I will be finished with school and, that's it, I will have no more excuses.  But how can I do this AND raise children?  I'm afraid that I can't.  I'm afraid that I will let myself, my husband and, worst of all, my children down.   

I'm so afraid of everything right now.   

I'm Back Here

So yesterday was the first day of my second semester of grad school.  It's been tough, I can't say I've ever worked harder in my life, but the rewards are tremendous.  I've learned and grown so much. 

The workload, however, became more than I could handle during normal waking hours.  I spent the last month of the fall semester staying up all night and sleeping for a few hours in the morning before starting all over again.  It caught up to me.  After Thanksgiving, my long, luxurious remission officially ended.  I'm sick again.  For real this time.

I met with my doctor the week school ended.  I'm going to try Pentasa for a couple of weeks to see if it helps.  With all of my holiday travels (and holiday tests of my stomach's maximum capacity), I'm not sure I've given it a fair shot yet.  I think I will wait to the end of this week to determine whether or not it's working.  I'm hoping I caught it early enough this time and I won't need anything more than a few pills.

Yesterday I held off on eating until 6:00pm, at which point I had a few rice cakes.  My stomach is far more sensitive in the mornings so I decided a light snack at dinner time followed by stuffing my face when I get home at 11pm will probably work best.  The problem is, the splitting headache I got in the middle of my late class.  The school has a single restroom for the ladies and it is directly outside of our classroom.  So you see my dilemma.  Better to starve than to have to use that bathroom for an emergency.  I'm hoping the Pentasa works.  I'm not interested in the Humira vs The Insurance Company battle right now.   

Advice?

Here we go again.

With all the travel and stress and burning the candle at both ends, it appears the Crohn's is coming back.

I've been having joint aches for about at least a month now. Then I went to the dentist who found gum inflammation out of the blue. Now my stomach is in on it. It's not bad yet but it's getting worse. The headaches are back, it's increasingly difficult to stumble out of bed in the morning and the fatigue is getting to me. I probably shouldn't complain too much,I've had a pretty good remission going for almost two years, but I probably will. I guess it's time to slow down.

I know I should call the doctor but I have a big decision to make. I really like my doctor. He is a good listener, he never rushes me out of his office or off the phone and he seems to care about my well being. That said, he's a little laid back for my personality, he's not a Crohn's specialist and I'm not sure how much experience he has with extra-intestinal symptoms.

Do I stick with my doctor? Do I find a Crohn's specialist? Do I try an integrative program which combines modern medicine with complementary alternative medicine? Does anyone have any experiences they would like to share regarding a doctor change or alternative medicine? We've got some big stuff coming up and I'm not prepared to have another two year bout with the Crohn's. Help!

Update

I survived the developing-country-film-shoot but barely. I was great for a few days but the unfamiliar food, lack of sleep and stress got to me. I had to skip a few meals but I made it out alive. The experience was amazing and I'm so glad to have had the opportunity. I ended up doing everything but taking photos, but it is a week (and a half) that I will always remember fondly.

The shoot came two weeks after my first skipped dose of Humira. I realize now that it was stupid to miss a dose but, at the time, I was feeling great and thought I would be fine missing one little injection. It was March and I was on my third Humira refill of the year. My insurance company had still not given me back a penny for 2011. I harassed them for weeks and made absolutely no progress. Each of my calls were met by a new diversion or straight up lie. Unending frustration. I had shelled out close to $6k for the year with no proof that I would ever see any reimbursement and I could not afford to spend another $2k, so I skipped it. A few hours before my flight, the insurance check arrived in the mail. Too little, too late.

I will never know if the trip would have been Crohn's free had I taken the Humira before I left. I will never know if I would have been ok skipping a dose if I were eating and sleeping comfortably at home. I do know that I felt much better a few days after I stuck myself upon my return. Thanks again, Humira.

I took three trips in the four weeks following the shoot and I can't say I was in good health. Flying kills my stomach. I don't know why. Even a short, one hour flight is enough to put my guts in knots. An even bigger problem is sticking to my regular food routine once I arrive at my destination. It's just impossible. Hopefully one day I will figure it out but, for now, for me, traveling means suffering. It's totally worth it.

Decisions, Decisions

I don't know what happened. I feel like I am stuck in some sort of time warp or something. Are there really only four days left in September?

Since I've been feeling better I feel like I've been going at life full speed. I've been out of town most weekends this year which has been great but exhausting. I'm doing much more socially and otherwise, and it feels really good. Then there's this whole wedding planning thing...

Since we've been engaged we've been making plans (then changing those plans (over and over)). Everyone wants to know how it's going, what we're planning, how far we've gotten, what's the date, where's the wedding, am I going to go to Kleinfeld's, are we going to make sure the wedding is near hotels, the airport, have I thought about making my own dress, and on and on and on and on.

In the beginning, we both kinda got wrapped up in all the silly wedding stuff. As time goes by, I do more and more research and hear more and more ridiculousness from potential wedding guests. I am, at this point, over it. I have decided that six month's rent for an open bar is absolutely absurd even if the venue is near the airport. We are not going to spend a zillion dollars for some stuffy affair that is so not us because it would be more convenient for some people who have never traveled to visit us before and will likely never travel to visit us again. If our venue is too far from the airport or too late in the year, they can stay home.

I will be making some concessions. I will probably wear a white dress, although I will not spend four figures on said dress. I will invite a bunch of people who have nothing to do with my life on a daily (montly, yearly) basis but I will not spend $150 on each of their dinners. I'm not going to spend my life savings to impress a bunch of people who live in other parts of this country and world with whom we have no regular contact. It's all incredibly illogical to me.

I take my relationship, my fiance and my life plans very seriously but, as it turns out, our life is dictated by the decisions we make, not by the convenience of our plans for our extended families. We do not live near either of our families and, although we speak to our parents on a daily basis, they have very little to do with the decisions we make and the way we live our lives. We love each other and respect each other and make a pretty good team. None of this will change because we are married.

So - we are going to have a party. One where a friend marries us and we will eat popcorn and gravy fries and keep some of our money in our savings account. I don't think most of our family will get it, some of them will make jokes and have lots of criticism to share between them but I have decided that's not important. We are going to have a wedding to make our parents happy but we're going to do it in a way that makes us happy.

Phew!

Crohnie

I feel great! (Well, except for a couple of things.)

Today I had my first blood test in three months. It was just a regular old checkin-up-on-the-Humira test. My nurse told me I have a completely new face which, I think, was a compliment. The 6mp bloat is gone and I have some color. I know I look better. I feel better. My life is better. I just still don't feel great.

My stomach is almost 100% better. I rarely have any trouble digesting anything I eat - even the stuff I shouldn't be eating. I do, however, still have Crohn's belly after every meal. If I swallow anything, no matter how big or small, it results in a food baby. I still have some trouble if I'm in an uncomfortable situation or if I'm nervous - BUT - compared to last year at this time, I'm a new person. So, when I call for my results on Monday, do I complain about this stuff? Should I just shut up? I can eat now! I can leave my house after I eat! I can make it to work without getting off the train and running to find the nearest facilities! Do I have the right to complain about some minor (if embarrassing) discomfort?

Then there's the pain. I do still have some minor pain when I, uh, youknow. But I have other, more disruptive pain. There's a pain at the base of my neck, on my back, where my neck meets my shoulder. It's recurring. It's horrible. It's much worse when I'm stressed out.

And my legs. They still hurt. It's more of a stiffness in the morning. They feel strained when I go up and down stairs. By the end of the day it's a different kind of pain. It's an achy, crampy, swollen type of pain that makes me just want to sit with my feet up or lie down. I've also notice many, many visible blood vessels on my legs which weren't there just a few months ago.

Then there are the headaches. I still have them. Often. And they're sometimes drug-resistant and always incredibly disruptive. And they make me so tired. Do I tell my doctor?

I've told him a million times about the headaches but he seems to think it's from the Humira so it's either headaches or Crohn's.

The body aches? He will send me straight back to the Rheumatologist who will tell me it's either Arthritis or Fibromyalgia and I can go to physical therapy. But I don't want to go to physical therapy. I can't afford physical therapy nor do I have the spare time. I want to know what's wrong with me! I want to know what my options are!

How do I voice this to my doctor in a way that doesn't make me feel like a half-crazy, whiney baby?

Suggestions? Advice?

What? It's August?

Wow

This year started off like most others, for the first few weeks anyway. Then...

In January I got some good news, fantastic news. In February some bad news. March and April were trying and full of uncertainty. In May I witnessed a terrible loss. Since then I have not had a chance to stop and breathe.

It has been a year of nonstop travel and house guests. We have been so incredibly busy between hosting and packing and flying back in time to get to work and trying to take care of ourselves and eat well and get enough sleep while still finding time to do the laundry and clean the apartment before we have to pack up the suitcases again and maybeweshouldleaveeverythinginthesuitcasebecausewe'releavinginafewdaysagainanyway!!!!!

The last few years have been trying, some of the hardest of my life. I am so thankful now to have my health back for the most part. I am thankful to have my family. I have witnessed what it is to lose someone and I now appreciate my own family much more. I realize now that we don't have all the time in the world and I want to take advantage of what we have left.

I want to do everything I can now that I am physically able but my body lets me know when I've overdone it. I am still working on the play/work/rest balance and I suspect I will never quite work it out. The joint pain remains. I'm actually beginning to realize it's not necessarily my joints. I feel it in my neck and my muscles. I'm beginning to think it is Fibromyalgia as the rheumatologist suggested earlier in the year. It is disruptive at times and I think I will have to follow up, eventually, when my last flight lands in a few weeks.

Complications

Things are getting so complicated.

I'm stressed. My routine has been disrupted. I'm not sleeping well. I was wrong about the timing.

For the last few days my stomach's been a little off. Friday I was in a lot of pain - not my stomach - my joints, my bones, my muscles - I'm not sure what it was. My arms hurt, my hips, my toes...

I was brave today. I took two Tylenol and walked at least 50, 60, 75 blocks. I had some business to take care of. I had a cloudy head to clear. I had to get out of here.

I'm swollen, I hurt and my stomach is so so upset.