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23 March 2011

Just have to laugh...before I start to cry

My whole life, I've been healthy, active, and except occasional knee pain, I have been able to be pretty active with sports, rock climbing, biking, hiking...in the past.

There was a point while on my mission where my body simply shut down. I got heat stroke one day and never seemed to recover. I saw a few doctors in Switzerland and they both told me I was just depressed and needed to take medication. I adamantly disagreed. I was frustrated with being tired, I couldn't do anything because I was so tired not because I didn't want to. I almost came home, but then I seemed to start getting back some energy, so I stayed. Thus began, I believe, my journey into the world of an autoimmune disease.

The years since then, some have been better than others, but I've been plagued with chronic fatigue, made worse with exercise. Yeah, that doesn't work well when you want to loose baby weight :) The last few years, other physical ailments have surfaced. I was telling my doctor a few weeks ago, My body is just falling apart! And seemingly random problems were presenting themselves, and we couldn't figure out why...because we were looking at them and dealing with them as individual problems (fatigue, achy joints, abdominal pain, numbness in hands/feet, stomach pain, vertigo, rashes...).

So, after about 6 months of stomach/abdominal pain, I go to the doc and he's trying to decided between gallstones or an ulcer. He's leaning toward an ulcer, so he wants me to have a scope done of my stomach. The scope doesn't show an ulcer, but there are lots of red areas on my small intestines so he biopsied them. Ok, so I need to wait for that, but once again, I have a problem that has no solution. Whatever. Now, I'm really getting frustrated, and probably depressed, because I know I'm not crazy! Something is not right with my body and modern medicine is not helping! (yes, I realize that statement can open a whole other conversation, but I'm not ready for that just yet).

So, when I woke up the other day with swollen and sore joints in my hands (my hands and feet feel like they're on fire!), I about lost it! Well, I kind of did. I called my Mom to vent and cry and she basically said, you may never get a diagnosis, but that doesn't mean nothing's wrong. You will just have to know that you have limitations and deal with one day at a time. Fine, but I'm still calling the doctor.

Turns out, the little biopsies the GI doc took, came back positive for Celiac disease, an autoimmune disease (thankyouverymuch to my European and Scandinavian heritage). All of my problems over the years have all been symptoms of this disease, vague by themselves but together, along with the biopsy, make for a pretty convincing diagnosis.

So, now, with this diagnosis, I'm overwhelmed and still in mourning for wheat (cream of wheat with brown sugar and toast is my most favorite breakfast ever!). I can't even just take medicine for it to go away. I have to alter my complete diet and make a drastic lifestyle change! And yes, allow me this selfish moment to say "have to." I'm mourning here, can't you see?? I'm sure I'll get to the "get to" stage eventually...Sigh...

Then, last night, as I'm wallowing in self-pitty, I had a lovely visit from one of my visiting teachers. She brought me...wait for it!...

A fresh from the oven loaf of homemade wheat bread :)

Yes, I chuckled, then, after she left I had a piece with butter...one more day wont kill me. I can't even think right now about my pantry full of gluten...oi vey!

7 comments:

Mariam said...

It's okay to let yourself mourn for the life you thought you would have. It is always hard to hear your life will never be the same. I know I have had lows were I feel guilty for having RA (like I can control it) and other times I totally accept it.

Sorry you have this burden to carry, I wouldn't wish it on anyone. But, the good news is you have an answer, you might be able to feel better. Here's hopping.

Love ya. Hope you feel better (physically and emotionally) real soon.

NorahS said...

It must be a relief to know what it is and to know you're not CRAZY! (Dumb doctors!) Rough about the wheat, though. There are lots of blogs you can read for ideas...

Love you!
Sharon

Unknown said...

It is a huge lifestyle change, gluten is in EVERYTHING! You will have lots of ups and downs, esp the first several months, but as you make the changes, and feel SO much better, you will come to accept it better. You might be surprised at how much better you feel in a short amount of time, how much your body and moods improve.
I suggest you find other people that have it, there are a lot of people out there, that you can vent, cry, and rejoice with. It feels like the end of the world in the beginning but in the end it will be worth it because you are going to feel SO much better! Hang in there and know you are not alone.

Miss M said...
This comment has been removed by the author.
Miss M said...

I am so sorry you have to deal with an autoimmune disease. Once you feel good about the mourning and are ready to look in another direction. I recommend you check out this site. LT and I are looking at food and lifestyle changes to improve our health. Also, one of my friends has made some significant changes with her families diet and has had encouraging results.

One world may be over, but another, just as good and maybe even better one is waiting.

Much love and patience.

http://nourishedkitchen.com/

TeresaL said...

(((HUGS))) I am glad that you got a diagnosis and don't have to be wondering what is wrong. But, still not fair!

Unknown said...

I keep seeing "gluten free" products these days, hopefully you'll be able to substitute some of your favorites. Thank GOODNESS chocolate doesn't have wheat, right? Good luck with your move. Can we have lunch one of these days? Email me.