Day 186

I read a tweet this morning about Crohnies and extreme heat and it got me to thinking...

It's been hot here in New York.  Really hot.  For months (okay, more like a week).  I "don't do well" in the heat.  I haven't since I was young.  I used to play softball in the summer and, while everyone else was doing just fine, my face would turn bright red and I would not be able to cool down.  I remember jumping in the community pool after the games and feeling my face burn against the cool water.  It would take me hours to return to normal.

Then there's now.  We went to a photography school/gallery/cool, temporary space made from freight containers last weekend (http://photovillenyc.org/).  The walk to the park wasn't so bad, but we ended up entering the wrong side of the park and walking in the sun for, I don't know, ten minutes?  Now, I just want to say here, I am a walker.  I live in New York.  We walk and we walk fast.  It's part of living here.  On a normal day, a half hour walk wouldn't even phase me.  But this day was hot.  It was already in the 90s by 11:00am, and the humidity and sun were oppressive.  By the time we got to the lecture I really thought for a few minutes that I was going to pass out.  I got to the I'm-so-hot-I'm-cold point and thought that was it.  I sat still and drank a bottle of water until I felt back to normal.

For the entirety of this heatwave, the news radio station I listen to has been constantly reminding listeners that the elderly and those who suffer from chronic illness should take extra care in this heat.  It didn't occur to me that I belong in that category until today, until I read that tweet.  I've been feeling so well for so long that I sometimes forget I have a chronic illness.  It hadn't occurred to me that the headache I couldn't get rid of this week was heat related.  Or that the heat is the reason I've been waking up in the morning feeling like I haven't slept a wink.  Or that the heat is causing the joint inflammation that is causing the feeling that my shoulder bones are grinding together as I type this.

I have been staying indoors in the air conditioning and drinking gallons of water, but maybe it's not possible to totally avoid the effects of extreme heat.  I walk around with a lot of pain a lot of the time, I think I'm just used to living with it.  But sometimes we must surrender.  The A/C is cranked up and I'm going to take a nap.     

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!

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?

Busy

This week I am pushing through the headaches and bloat and nothing fits around my waist. I've got lots to do - some fun and some not so much. I'm feeling lately like I've wasted too much time being sick and I want that to change.

So I'll be busy straight through the weekend, whether my guts like it or not.

Gluten Free Is For Me

A couple of year ago, when I first got sick the second time around, the doctor decided to test me for Celiac Disease. One portion of the test required that I stop eating gluten for a few weeks. It was painful but gluten and I took a break. In the end I failed the Celiac test but I did feel a bit better at the end of those gluten free weeks.

I went back to eating gluten (it's so hard not to!) and realized what a difference it made. Without gluten my migraines were fewer and farther between. I also found the temporary mental paralysis I usually felt after a meal was missing when I was off the gluten. I decided, after a short fling, it was time to break up with gluten for good.

Giving up gluten is not easy. It's especially difficult with Crohn's as some of us must also give up dairy, fried foods, raw fruits and vegetables, etc. For me though, it's a no-brainer. Giving up gluten is a small price to pay for weekends free of migraines and more productive afternoons at work.

I'm certainly not as vigilant as someone with Celiac Disease must be but I do realize how crucial it is for someone with Celiac to completely eliminate ingestion of wheat. I always order from the gluten free menu if there is one available but I will order gluten free dishes off of a regular menu if there is no other option.

Speaking of gluten free menus, there is an increasing number of restaurants that take their gluten free menus very seriously. Many restaurants flag gluten free plates to make sure there is no accidental contamination. Some send gluten free orders to the table with a manager. There are a lot of gluten free dishes out there that are less than delicious but it's comforting that so many are making such a valiant attempt.

A gluten free diet is commonly believed to improve the quality of life of those diagnosed with Autism. Wikipedia lists Parkinson’s disease, Multiple sclerosis, Seizures, Cognitive problems, Type 2 and Type 1 diabetes, Down syndrome, Rheumatoid arthritis among those conditions which may improve with a gluten free diet. Some believe Crohn's related intestinal damage limits one's ability to digest gluten similar to Crohn's related lactose intolerance. I personally saw no improvement in digestion when I stopped eating gluten. I did, however, experience fewer migraines and less brain fog and that's enough for me.

A New Week

I've had an incredibly busy weekend which included strenuous physical activity but no extra sleep. This does not bode well for the coming week and I'm already beginning to feel the effects. I'm sure staying up to watch the Oscars isn't going to help either.

On the bright side, I am feeling better Crohn's-wise which has allowed me to stay so busy and accomplish so much. I'm looking forward to warmer weather and being able to spend some time outside this year.

Hopefully I will find time to catch up here soon.

Blah

I spoke with my doctor last week. My blood test was fine except for slightly elevated liver levels (sorry, I have nothing more specific). He thinks it's probably from the Tylenol I've been taking for headache but my numbers were not high enough to stop the Tylenol.

The doctor agrees that my joints shouldn't be more painful now that I'm (supposedly) in remission. He is sending me to a Rheumatologist who I will see next week. This particular doctor comes highly recommended by my Gastro, online reviews and someone I know who has seen him. As always, I am incredibly grateful to live in New York and have access to some of the best doctors in the world. I have an appointment next week.

Otherwise, I'm still having headaches several times a week although I haven't had a migraine in quite some time (knock knock). My guts are generally quiet during the week as long as I don't eat lunch - which I learned the hard way last week. The weekends are still a bit more tumultuous because I like food, OK?

And so we wait...

R-E-M-I-S-S-I-O-N

I received official word today that I am in remission! I wasn't expecting this at all. I've been feeling better but not great. I thought they would report that my capsule endoscopy showed improvement but not that it looked good!

Officially, Humira is working for me! My intestines have officially healed themselves! I am officially ecstatic!

I'm not perfect. The Humira is giving me headaches almost daily. My joints are still bothering me a bit and I still have some pain. I may have something else going on or maybe I'm just really out of shape. But, there is light at the end of my tunnel.

This is my first remission so I'm not sure what to expect. I don't know if I will physically ever be back to my old self. Anyone have any advice or insight into what happens next?

Headaches

Last night I had my fifth Humira injection. They've been going pretty well so far. I find it fairly easy to inject in my leg and I only had a problem once - I think I moved after the needle went in. It hurt. A lot.

The Humira is definitely helping some. I'm on week eight so I'm assuming the medicine is at full power by now. I only have diarrhea four or five times a week now (as opposed to four or five times a day) and, although I still am having pain, it's not as often. My stomach still swells to six-months-pregnant after I eat and I'm still not feeling confident enough to eat while I'm at work, but I'm getting there.

The only thing I've noticed is that I seem to get a headache a day or two after my injection. The headache lasts a few days but it's manageable. My doctor doesn't seem to think it's a problem so I guess I'll wait it out for a while.

This weekend, however, I had an awful migraine. It was the day before my injection so I don't think it was Humira related. I felt really nauseous the night before but went to bed without thinking much of it - I'm always nauseous. The next morning I woke up to ringing ears and a slight headache. I decided the best thing to do was to go back to sleep. The next time I woke up the light was bothering me and my ears were still ringing but the headache wasn't any worse. A few hours later though I had to get back in bed. I was shaky and nauseous and my head was really killing me. Soon I was in so much pain I couldn't bear it. I have literally not been in that much pain in my life. I had the blind spots and everything. By the time it was over I was completely wiped out and felt exhausted the entire next day.

I've had lots of really bad headaches since I've been sick but nothing to this degree. I have been traveling and entertaining guests and not eating right lately. I've also been a little more stressed out than usual and I'm hoping that was the cause of the migraine. I'm going to try to relax and eat better (at least until Thanksgiving) and see how it goes.

I'm having some trouble finding information connecting headaches/migraines to Crohn's. Does anyone else have headache issues?