Nightmare

I saw the GI about two weeks ago and it was decided that I needed to be biopsied again. I scheduled the test for May 7 because I had a trial before then. At the time, I was feeling bad--nausea after meals and the pain and other the symptoms I had been experiencing for a long time--but it was manageable. The doc even offered me pain meds that work specifically on the small bowel where my pain has been concentrated forever. I declined because I knew no matter the test results, after the test, I was going gluten free to see if it helped. The GI was in agreement and actually suggested it before I mentioned that was my plan. So, I left that appointment, ready to do what was necessary. I had a plan.

That was about two weeks ago. With the test coming, I made certain I was eating at least two glutenous meals a day. And then, I started to get worse. Every symptom has intensified. And now, I'm living in a food nightmare.  I dread eating, but I seem to always be hungry, even after eating. I feel like I'm living in a constant fog and I can't concentrate. I'm tired all of the time, but I can't sleep. The pain and nausea are at all time highs. I could barely drive the other day and as soon as I got home, I kissed the kids (barely) and dropped into bed, crippled over in pain while the world seemed to be spinning relentlessly.

The Mad Scientist implored me to stop the killing myself for the diagnosis and TRex begged me start not eating what I love, but I didn't have a day to take off before the trial, especially since I didn't work Thursday afternoon through Wednesday morning.

And then it happened, the trial got wrongly adjourned (by the other side), so I gratefully moved my test up. I will finally be able to go gluten free this Thursday. When I began this journey back in February, I dreaded going gluten free. But now I'm ecstatic at the thought. I want to feel better. I need to feel better.

Gluten had better be my nemesis. I can't take any more of this nightmare.

Negative

My initial blood test for celiac came back negative. I'm not really surprised. I've had symptoms since I was in high school and been tested previously and they've come back negative (even biopsies). I'm waiting to hear back from my primary care physician to see what she wants me to do next--different blood test, biopsy,  or simply go gluten-free. (I understand that some of the tests are not accurate when a person has a weak immune system, which I have. I'm not sure if my doctor took that into consideration when she ordered the test.)

I so wanted a definitive diagnosis. I know if I go gluten-free and feel better, that is pretty good proof. But I also know that if I go gluten-free and feel better, I will never have an official diagnosis because you have to eat gluten for any test to "work".

I mentioned to a friend that I was certain I have celiac and would be going gluten-free once the testing was complete (no matter the outcome). Her response was exactly why I want a diagnosis. She told me "It's bad to go gluten-free if you don't have a diagnosis." I don't know the truth of that statement, but it is exactly what I will face for the rest of my life--from friends, family, colleagues, insurance companies. If you don't have a diagnosis, it must be in your head. And in the my head, I will wonder, even if the pain I've lived with for years finally goes away.

I know I shouldn't let other people's thoughts bother me, but I know it will cause headaches if I don't have a real diagnosis. I just want something to be easy for once (not that having to go gluten-free would be easy, but it'd be easier with a diagnosis). What's even more frustrating is that I've been living with pain for so long that people don't believe me any more. Like because I learned that I couldn't just lay in bed all of the time (like I did when I was first trying to get diagnosed), it must not be real. Yet, I have had problems for years that I've pushed aside and now that I want to put my health front and center, I have people believing I'm loony.

I stopped hoping for a diagnosis and "cure" to my pain many, many years ago. But, for some reason, I let myself hope I'd have an answer this time. I am ready to do what's necessary. But now, I don't know what it means.

Explosion

TRex asked me the other day if people could explode. I told him people could explode under the right circumstances, such as swallowing dynamite, but that he didn't need to worry about it. He accepted that answer and went on about his day.  I forgot about that interlude until I sat down at my desk today, thinking of the week that has just transpired. I couldn't hold it back any more and I wept, big fat air-gulping sobs. I had exploded.

I can't believe how much life has changed in the last week.

First, we had the Dancing Queen's annual IEP meeting. I don't know if you've ever made an IEP for your child or even know what it means, but it is emotionally draining and extraordinarily hard to think about accommodations that may be needed for the next year for your child.  You have to think about what will she need if she has another open heart surgery as you've been warned is possible. You have to think what happens if they can't operate. You are forced to think of the hardest things. And despite loads of preparation, I still crumbled into a ball during the meeting and cried.

After the IEP meeting, we got a message that TRex was upset at school. We called and he wanted to know why Rookie had to die. Then of course, the Mad Scientist and I had to put Rookie to sleep.

That was Friday.

Friday night, the Dancing Queen was up most of the night coughing and gagging. She started vomiting on Saturday. By Sunday, she couldn't keep anything down and refused to eat or drink.  On Monday, she ended up in the ER because of dehydration caused by a simple cold.

Tuesday, DQ was home, but still not eating or drinking and we debated about taking her back to the hospital as she just slept. TRex, upset by it all, took his fears out on a classmate and his teacher.

Wednesday, DQ still wasn't really eating or drinking much and wasn't peeing at all, yet she woke up with a swollen face, showing that her heart was not working properly.

Thursday, I got her to eat and drink a little. She went to the doctor and we learned she had lost half a pound due to her illness. When you only weigh 26 pounds to begin with, half a pound is huge!

Thursday, she peed once for the entire day. Just once.

Through it all, I was keenly afraid that I could lose her to a heart attack from dehydration.

DQ went back to school today, but only after she was up all night coughing and crying out in her sleep.

To top it off, with DQ sick, me working a ton, and the Mad Scientist sick, we have lost control over our house. It is so overwhelming. I need a week to throw everything away just to be able to breath in there, but I don't have a week. And we need to sell our house or rent it or get rid of it some way. I don't have the time to clean, let alone to talk to realtors and mortgage brokers.

Then throw in the "little" big things that are piling up. I have to find someone to watch TRex this summer when school is out. I don't even know where to begin. DQ needs to have her periodic abdominal ultrasound to check for kidney cancer. I haven't had the chance to look for the script, let alone find a morning to take her.

I have been so worried about DQ's noticeable cardiac symptoms as well. She was supposed to see her cardiologist this week, but couldn't because she was sick. So, once again, we wait and worry. 
 
Of course, it was this week that I really thought about how bad I have been feeling for so long and how much worse I am getting.  I feel ill every day of my life. A change needs to be made. I know what that change is, but I need help to make it because the change is so hard. I don't have will power. Yet, I have no help, and am faced with daunting temptation everywhere I turn. It is too much to do alone, but I have no one to help me. And since I can't do it alone, it won't happen. It will only get worse.

I am so overwhelmed. And sick. And slow.

It is no wonder I exploded.

Celiac Disease

I think I have celiac disease. I've thought it for a very long time now. I've been tested and it comes back negative, but I know false negatives happen. I don't want celiac disease. I don't want to work that hard to eat, but I'm so tired and I hurt.

I know I have celiac disease.

There. I've said it. I'm certain I have celiac disease.

It's really funny to type these words. Ironic almost. I'm coming to terms with what I have known in my heart for 10 years. I have celiac disease. Yet, I'm eating leftover pasta. Right now, I'm eating leftover pasta. I know I will feel ill in a couple of hours from eating this. I may even have worse pain this evening, but I'm eating it anyway. 

I know, you are thinking "oh, she is just jumping on the gluten-free bandwagon that seems so popular these days." Let me say this unequivocally: I DO NOT WANT TO BE GLUTEN FREE! The time, the energy, the cost, the hassle is not for me. I want easy. I want quick. I want affordable. Being gluten free is none of the above.

Moreover, I am decidedly anti-fad. I try not to do what everyone else is doing simply because everyone else is doing it. Sometimes, it happens. For instance, I love Pinterest. But, I didn't want to join pinterest for a long time simply because everyone else was doing it. Same thing with the Facebook, which I now love. I resisted for years. Anyway, please know going gluten free does not sound fun to me in any way, shape, or form.

So why would I think I have celiac sprue, a horrible disease that makes you into a label reader from hell and that prevents you from eating pizza, pasta, cake, beer, and everything else lovely to eat in this world?  Simple. I have lots of the symptoms that have gone undiagnosed since 1996, despite massive amounts of testing for every other disease in the book. And many of my family members have it. And yes, celiac disease is familial.

The first of my aunts to be diagnosed was diagnosed about ten years ago. She has been the strongest advocate that I get tested and re-tested. She has also known all of the pain I have suffered over the years that could never be explained. Yet, I ignored her. I have learned to live with chronic pain, so I didn't think all of the hassle was worth it. Yes, there are some days I can't walk, but I've managed to work through the pain for over 15 years.

But lately, I've been feeling more symptoms. I am keenly aware that feel ill after a snack of pretzels. And I'm lethargic, despite sleep (and it is more than late nights with DQ). I know I have to do something about this, but I want a definitive diagnosis. I don't want to go gluten free and then always wonder in the back of my mind if I really need to be. I know I will wonder and it will drive me batty.  I also want a doctor who believes me when I say I have celiac. In the past, the GI who did my testing didn't believe it was possible because I am fat (celiac sprue used to be called the wasting disease because your body can't absorb nutrients). But celiacs aren't necessarily thin.

So, at my check up with my primary care doctor next week, I am going to discuss my concerns. I'm going to explain what I am doing. I am going to get a referral to a different GI doc. I'm going to be properly tested, but before I go in, I'm going to eat lots of gluten so that my villi will definitely show what I know in my heart is true.  I'm telling this to the world so that I can get support. I don't want to go gluten free and left on my own, I won't. But if you all know, perhaps I'll have a reason to stick to my guns this time. I want to get healthy for my kids. I want to be around for a very long time. If I have celiac and I leave it untreated, I am only shortening my life. I don't want to do that.