In a word: Frustrated

I am over a year into my current flare, which has unfortunately included not just Crohn's symptoms but also daily headaches and weekly migraines, the return of my arthritis, the development of GERD and asthma, a failed root canal requiring dental surgery (this week), a now 3+ month bout with significant constipation, three trips to urgent care, one late-night trip to the ER, and yet-to-be-diagnosed daily chest pain spanning 6+ months. Oh yeah, and I found out today from my pulmonologist (when looking at my CT scan) that I have scoliosis. I mean, seriously?

On the bright side, I also got married, finished my PhD, and started working as a professor during this time too. So it's not all bad... yes, that's my attempt to be more positive :)

But I am frustrated. Frustrated to tears. Just talking about what's going on inside my body with a doctor inevitably leads me to start getting misty eyed because with each passing day, it's harder for me to say that it can only get better from here. I was so spoiled with my Crohn's diagnosis--from my first GI visit to the confirmatory colonoscopy, it was six weeks. Now I feel like I have so many unanswered questions. What is up with this constipation and why am I experiencing it now after never having these symptoms before (I've already ruled out meds I'm taking)? Why are the meds not really helping? What is the cause of this chest pain? Why do I feel so horrible and run-down all the time but all my bloodwork comes back normal? This is *not* in my head. I am a rational person and I know what constitutes pain and abnormal fatigue and all these other things I'm going through.

I just hate not having any answers. The not knowing part is what is driving me crazy. That and the part where I get diagnosed with a new disease/condition every few months. One was plenty; I really didn't need all the extras.

I also really hate how much these illnesses affect my daily life. I haven't become house-bound, but it's become close enough. This week, I officially withdrew myself from participating in my first triathlon next month, which was very hard to do but was the right thing to do (as I cannot compete and there was a waitlist). I've had to stay at home numerous times while my husband took our son out to do things, which is hard to do even though my husband is very understanding.

It's just losing the control--I've always said I'm not going to let the disease control my life and it is--well, maybe not the Crohn's alone but my body as a whole certainly.

Every night when I'm laying in bed I try to tell myself tomorrow is going to be a good day and I'm going to wake up feeling great and not have any issues. I think it's one of the main things helping me from succumbing to the bitterness and sadness that accompany chronic illness. As frustrated as I am, I know how important it is to try and maintain a positive attitude. Boy is it hard to do so, especially when you feel like you're never going to get better, but that's what I'm working on right now. That, and kicking these darn diseases to the curb.

/end rant

Thanks Kaz. I just needed to vent after my doctor's appointment this morning. I feel like I need to do that a lot lately.

I know scoliosis is a non-issue at this point. It was just one of those "you've got to be kidding me" moments when the pulmonologist said the only thing the CT scan showed was my scoliosis, and I was like, "What are you talking about??" I remember being tested for it in middle school and the nurse not noticing anything, so either it developed late, the nurse didn't do her job well, or it's really minor.

The asthma is more of an issue because I've been having some pretty major shortness of breath issues for the last year or so. She put me on Symbicort plus a rescue inhaler, which will hopefully take care of the issue. I had no idea a lot of women developed asthma in their 30s (learn something new every day!). I do have allergies, but I don't think they're related based on when I have shortness of breath problems.

The migraines I've had half my life, so they're not as hard to deal with. The tougher thing this last year has been that I've gone from frequent headaches (few times a week) to daily headaches. But the meds I take certainly help in that area.

Hi Vitaka,
I've been struggling for several months myself and I can empathize with your frustration with your body not cooperating! I know you are venting and trying your very hardest to keep a positive attitude, although it can be extremely hard to do. Here's a few tips I have learned from cognitive behavioral therapy. I will be the first person to admit that I don't always practice what I preach, but hopefully some of it will be useful:
1. Don't make a laundry list in your head of all the bad things that have happened...it makes everything more overwhelming!
2. Work on practicing mindfulness. Obviously you need to tell your docs everything that is going on with you, but separate from that, try to just focus on the present moment and deal with what's immediately in front of you. Don't look backward, and try not to worry so much about the future.
3. Learn some relaxation exercises...yoga, deep breathing, meditation, prayer, etc
4. Don't go to bed at night telling yourself tomorrow will be a good day...you may get disappointed. Instead just try to stay neutral and tell yourself that you will take each moment as it comes and trust yourself to cope with whatever comes your way.
4. Look for the joy in the simplest things...a warm breeze, the sunset, people you love,etc

There are times when it is useful to do your research and try to find the causes and cures to your symptoms, but try not to stay stuck there. I try to tell myself that this is my life RIGHT NOW. It may get better and it may get worse, but either way, I need to be alive now. I have spent too much time since my Crohn's diagnosis, waiting around for remission (which I've been lucky to have). Now I try to enjoy whatever I can take away, and endure the rest. I hope I'm being helpful and not just annoying.....you will see that I vent A LOT- sometimes you just need a chance to say "this stinks!" Take good care!!!

I am right there with you! I told my primary care that I was going to stop seeing her cause every time I did she found a new problem! So today I take 12 different prescription medications each day and humira every two weeks, but I am still able to work and enjoy my family because of her agreesie treatments of all my ailments. So hang in there.

Thanks guys, I know you all know where I'm coming from, which is why I come here to complain. :)

The Lyrica appears to be helping somewhat with the chest pain, so my GI wants to up the dosage (I'm talking to her today about that). She said that because I'm so sensitive to meds she started me on the lowest dose. That's the worst of the pain, so if I can get that under control I'll be happy. I hate pain meds so I try to avoid them at all costs (with the exception of my migraine meds!), which I think confuses some docs, but I prefer to be as lucid as possible and in pain than have less pain and the side effects that typically accompany them.

In positive news, my oral surgery appears to have been successful so far (yay!).

In strange news, I had to travel for work for five days and my constipation went away (replaced by good ole diarrhea), which I will generally attribute to stress of travel (I have anxiety-related IBS-D) and lack of control over diet, but now that I'm back home, it appears that the constipation is returning. Sigh.