Monday, March 29, 2010 diagnosis journey

Well, I had a great doctor's visit. I was concerned that my GI dr would rush me thru my visit like last time, it was not, he took his time. He went over things slowly, made sure we covered everything - it felt great. We still don't have a definate answer just yet, but we know that there is inflammation in various parts of my small bowel, intestines, colon etc - he listed a few names. He is thinking that it's either lymphocytic colitis, crohns disease or irritable bowel disease. He is running a battery of tests to rule things out. He is also testing for iron, potassium, B12 etc. He is checking my sed rate and ana, one theory is that this is an autoimmune response, possibly from my lupus - this may be how my lupus has been manifesting itself. Which would also explain the anemia. The other possibility is that it's vascular. I haven't researched any of this new information - so I could be repeating myself and not knowing it. I will meet with him in 2 weeks. Meanwhile, I am on 60mg of prednisone - hoping that this will decrease the inflammation!

I can say that after just taking the smaller evening dose, I feel fantastic. I haven't felt to alert mentally, so alive - is this how a "normal" person feels? I feel like someone poured life back into my veins. I am hoping it keeps up. I am hoping I can accomplish much over the next 2 weeks. I know I can't stay on this for long. I had this realization at 10pm when I was getting Mike & Sam from LAX practice, maybe, just maybe I've been in a lupus flareup for so long that I just didn't know what "normal" felt like. I could have been dealing with it and just not knowing or recognizing it. Even my intestines feel better already - I had some snacks tonight that would make me bloated, gasey and uncomfortable, but not tonight. I want to just jump for joy! I may be getting ahead of myself - but why not rejoice right now - enjoy the journey! Thank-you Heavenly Father!

I do have some pictures from my test, I will scan and post them tomorrow - it's just so amazing. I am so grateful for the inspiration of my doctor. He was truly concerned about my health and how long this has been going on - I could really feel his empathy. That in and of itself felt great. Frank has been such an amazing support thru all this. He is willing to go gluten-free if it will help me - gotta love him for that. I am truly blessed.

....of Theresa's patience....

I have been keeping myself busy today and I wait for the Dr. appt this afternoon. I have been working on keeping a journal of sorts of the journey I am on living gluten-free - the tears, the joys, the challenges, the frustrations, the successes. I plan to make a special scrapbook to chronicle these events. I wish I had kept a journal from the start - I can remember bits and pieces of what was happening, how I felt. I have some photos I can use too. I know it's been therapuetic for me to review all that has happened - most importantly - THE BLESSINGS! This is not a curse, it's been a great blessing - I have learned so much about the illness, about nutrition, about myself and what I CAN DO! It's been amazing. I know the support of my family and friends has been amazing too. As I get ready to head out the door - I just wanted to be sure to record some of my feelings. I go from totally excited - like a kid getting ready to go to a toy store and get a long awaited toy - to tears - not knowing what to expect. I kept thinking "I am prepared for anything" - I realized, I am not prepared for "we didn't find anything, we don't know what to do or say" - I'm not wanting to be "sick" - but I just want answers. So, I am on my way... I will update when I get back - and hey, I hope to have some pictures - if I remember to ask for some. Hi Ho Hi HO -- it's to the DR I go!

Wednesday, March 24, 2010

...tests tests tests

I was finally able to upload my pictures from my capsule endoscopy. This was the coolest procedure. I can't wait to see the results on Monday (March 29) - yes, I'm anxiously waiting!!!! The pill was huge, but went down just great. Then there is the stylish belt with the recorder for the pictures - I should be on CSI! lol. The prep went fine, it's the after shock when I can eat solid food again that is rough. It's been over a week and I am still super sensitive to most foods. I have felt strongly that I need to take dairy out of my diet until things settle down - hopefully not too long! lol. I also realized last night (after baking wonderful cupcakes and a carrot cake) that I need to take out sugar. The gas is really rough. NO, I don't "toot"! Just for the record, so I am super uncomfortable sometimes, most times. I do great on a liquid diet, I have to fall back on the clear liquids for a meal here and there to help my body! I am keeping good notes, so I will be ready for my appt. on Monday.

Last week I met with a nutritionist. We are trying to solve the mystery of how I can possibly be ingesting gluten after 7yrs. I've bought new pots and pans, new dish towels, new dish cloths, new personal care items. Keeping all gluten-free. I also have a new mixer just for GF, new baking pans - slowly building up my stash. All new cooking utensils, cutting boards, rolling pin - oh yeah - non-stick rolling pin - wonderful! I feel like a Gluten-Free OCD Monk! Yikes. But, if it helps - why not. We will not longer be baking with flours in the house, no cake mixes etc. The family can still eat gluten in the house, we just can bake or mix with it - the flours stay in the air anywhere from 24-72hrs. I feel like a total Gluten-Free nerd right now. Rechecking all my foods. I bought software that has lists of Gluten-Free mainstream foods. That is a big help. There are still so many things to research. If I had money - I'd invest in making inexpensive gluten-free personal care items. So hard to find. Foods are much easier - it's becoming the "thing" now. Many companies are jumping on the bandwagon - making Gluten-Free eating a breeze! I will update more when I get my results. I do want to add as a personal note, that this has been very emotional for me. I do know that there is a withdrawal that happens when removing key foods - like gluten, dairy from my diet - it's been an emotional roller coaster for sure. One step at a time, I am so grateful that Frank holds the priesthood and can give me blessings of comfort - as needed - what a great blessing!

Wednesday, March 10, 2010

of Theresa's GI tests....

Well, just got home a bit ago from the GI doctor. The inflammation they saw could be a type of colitis - there was microscopic inflammation. It indicates that I am somehow ingesting gluten. Weird, I've been gluten-free for almost 7yrs. I am OCD about hand washing, dishes, foods etc. Not sure where it's coming from. A mystery to solve! I am on Pepto Bismol 4x a day to see if the inflammation will decrease. I am also having a Capsule Endoscopy done on Monday. This is to try to see if there is anything going on in my small intestine (I think) that would be causing my anemia. They are looking for possibly another autoimmune disease, like Crohns. This procedure calls for me to be on a liquid diet on Sunday, I go in on Monday, get hooked up to sensors and a camera. I will then swallow a "small" (ya right - I saw the photos) capsule that is a camera. It will take several thousands of photos as it travels. This will take about 8hrs. I will return to the office at 4pm to have the camera removed. On March 29th - I will get the results of this test. All in all - not a bad appt. Oh, yeah, I am off all my supplements, off the dirt and rocks diet. I just have to eat a strict gluten -free diet! WOO HOO! Life is sooooo good! I am hoping to get a picture of the capsule before I swallow it, and the camera and hook-ups - would make for a fun scrapbook page - ehh? I wonder if they'll let me scrapbook some of the photos taken with the capsule??? Just kidding = I don't think I could find any stickers, stamps or embellishments to coordinate with my colon! Ha Ha! Humor is the best medicine. Off to finally eat my lunch - my yummy lunch! Thanks to everyone for their love, support and concern thru all this, not to mention patience with me!

Monday, March 1, 2010

... of the "dirt and rocks" diet

Some days I just have to laugh about the journeys of my diet and the search for answers to why I am always "on the run" if you will! Well, over a month ago my DO decided to make some changes yet again to my diet (which is what happened last year too), not only am I gluten-free (have been for nearly 7yrs now - it's looking easier and easier!), I am corn free, egg free, dairy free, nightshade free, sugar free and fruit free. What does that leave? dirt and rocks... sorry - I just have to laugh - my friend Polly and I came up with that. Not to mention the veggies that I was tested as being allergic to last year. I also avoid most soy products too. It has kept my weight in check and keeps me from overeating for sure! Cravings are pretty much gone too.
My DO suggested I finally get a colonoscopy done - I finally agreed! I saw my GI dr last Tues, and on Thur I was in getting the colonoscopy and endoscopy done. I will have my full results on March 8 - I am looking forward to some answers, I don't know if I am emotionally prepared for the answers or the solutions - I am praying for strength! One thing that was noted on my discharge papers was that they found inflammation in my descending duodenum, as I researched this, once we had power, I found that is the area that your body digests it's food - which is another issue that I have, I am not digesting food, we thought it was an allergic reaction. So, they did several biopsies and other tests. We will see!
It has been such an emotional roller coaster, this past week was crazy, I would just keep having breakdowns. I was so excited to finally go for this testing - I was desperate! Yet, it was draining. When we got home on Thurs, I was able to get lots of rest, then we lost power due to a crazy rain/wind storm! I just wasn't prepared for dealing with no water, no cooking etc, really a challenge when you have a diet like mine. I did "cheat" - my version of "cheat" - I had salsa and queso w/tortilla chips - 4 items that I'm restricted in, then on Sat I had potatoes. I was miserable after all this. Not worth the "cheat" for sure. I do believe my body was still adjusting after the procedures, I should have started off slower on Thurs, I was hungry. Lesson learned, eat slowly, mild gentle foods. I did also have popsicles to ease the sore throat - another food on the "forbidden" list. Today, I start fresh - limited diet, maybe some chicken broth to help my body readjust, lots of water. What's hard is that I really do enjoy cooking! With my limited foods, it just doesn't feel fun anymore. If my family ate the way I do, it would be a piece of cake (oh yummm), but... Poor Frank, I keep telling him that when the kids move out, we are going to be a totally gluten-free house - he can eat all the gluten he wants outside the house, but inside - no way! I need something to look forward to when I have my empty nest - another story for another day! Sorry to sound so moaning - I guess I just want to record all my feelings about this, something I wish I started December 2008 - when this journey began!
Off to recover the house after being out of commission for 2 days, and 2 days without power! Boy I learned a lot about how unprepared we are for emergencies! Sam made a good point - we don't have anything in food storage that you can just grab and eat! Good point!