Thursday, February 25, 2010

Yet Another Bizarre New Symptom

Just when I thought my body couldn't surprise me with anything new, I developed Bizarre Symptom #387.

I was on my way to my weekly acupuncture appointment Wednesday, after dropping off some paperwork at one of the schools we've applied to for Ellie, when I felt a wave of intense fatigue hit me. That's not all that unusual, although it was more intense and more out of no where than I usually feel. Immediately after the wave of fatigue, I started having intense prickling on the left side of my face. The muscles in my face also started feeling weird.

The best way I can explain how my face felt is that is was like the sensation of novocaine for dental work. My face wasn't totally numb, like right after the injection kicks in, but more like it feels when the novocaine is partly worn off, when your lip and face feels kind of rubbery, when there's some sensation, but it all just feels weird.

I went ahead and went to acupuncture, feeling mildly panicky over yet another bizarre and scary new symptom. Can I just say I'm a little tired of developing bizarre new symptoms?

My acupuncturist made me promise to call a doctor as soon as I got home. Actually, she strongly recommended I call my doctor right then and there, or consider going to the ER. But it wasn't getting worse or spreading, and it didn't seem to life-threatening, so I went ahead and got a quick acupuncture treatment and went home.

I don't have confidence in either of the two neurologists I've seen, so I put a call into my internist. Unfortunately, things didn't work out for us to connect, and after a brief chat with a triage nurse (who also thought I should go to the ER), I waited until my previously scheduled followup appointment with my internist Thursday afternoon. Don't get me wrong -- if anything had gotten worse, I would have gone to the ER.

My internist did a neurological exam on me, and said that the left side of my face did seem "weaker" than my right. I'm also noticeably weaker in my left leg and left arm than my right side, but those can be attributed to my back and shoulder problems. She says it's not Bell's Palsy because I can still move the left side of my face and it's not all droopy. (Ok, she used more proper medical terms, but that's the gist.)

It's been a few weeks shy of a year since my last brain MRI, so I guess I'm going to have another one, my third, as soon as my insurance company approves it. She also is ordering a magnetic resonance angiogram (MRA) to look at whether I have vasculitis, an inflammation of blood vessels, in my head/face. Other possibilities she mentioned include a strange kind of migraine (probably the best of things she mentioned), multiple sclerosis, mini stroke, and probably a bunch of other diagnoses.

She says that if the brain MRI and MRA come back normal, she's going to order a spinal MRI to see if something is happening there that's causing these weird symptoms.

Oh, which I guess means I should mention Bizarre New Symptom #386, which started a couple days ago. And it's very, very bizarre.

I essentially feel at odd times like I've lost control of my bladder. I get a sensation of heat that flows from my, well, crotch to about halfway down the inside of my left thigh.

The first few times it happened, I truly panicked and feared I'd wet myself. But no, my pants and underwear were totally dry. (Thank goodness -- I'm not really sure how I'd explain adult incontinence to my 5-year-old who sometimes still thinks there are better things to do with her time than visit the bathroom.)

My internist says it's most likely related to the nerve compression in my low back that causes my sciatica, but she agreed it was definitely bizarre. And because both my new symptoms are on my left side, it's possible that they are somehow related.

Between next week's endoscopy and colonoscopy and the MRI & MRA in the near future, I'm hoping that maybe some answers are just around the corner.

p.s. Happy birthday, Dad!

Wednesday, February 24, 2010

Cool Resource For Those With Immunodeficiencies

While browsing on MedHelp, a site where patients advise and support other patients, I found a reference to Immune Deficiency Foundation, an organization I hadn't come across before.

It's got a lot of good information on it on a variety of immunodeficiencies. I even found the best resource I've come across yet on IgA deficiency, which is something I have. I plan on printing it out and taking it to several of my doctors. I found it especially interesting that IgA deficiency is associated with autoimmune diseases like lupus, but also with a variety of gastrointestinal problems.

Makes me wonder if maybe my IgA deficiency will eventually help pull together a name for my mystery illness.

Tuesday, February 23, 2010

Gluten-Free: To Be Or Not To Be?

I started this gluten-free trial mostly out of fear.

I was seriously freaked out when I developed bloody diarrhea in late January. And Scott must have been mildly freaked out too, because he was the one who suggested it was time to try going gluten-free whether I had celiac or not.

We agreed on my going gluten-free for the month of February, and then, sometime in March, would try re-introducing gluten to see if it made me worse.

Meanwhile, we've been trying to figure out whether being gluten-free has helped any of my symptoms.

The bloody diarrhea did stop a few days into being gluten-free, but there's no real way of knowing whether the two are connected. It could just as easily be that I finished my antibiotics, or going fresh fruit and veggie free gave my intestines enough of a break to heal and stop bleeding.

My gut in general is feeling better. And maybe that's from going gluten-free, but my problems with my gut were so recent that it's hard to know whether they'd have eased up by now anyway. (I'm not symptom free in my abdomen, but it's much less severe than it was. I'm hoping the improvement doesn't mean my colonoscopy will be inconclusive.)

The only thing that has me really surprised is that I seem to be waking up earlier than what my normal has been for a couple years now. I'm averaging closer to 12 hours of sleep instead of the usual 14 to 16. Of course, because I'm waking up around 9 a.m.-ish, I'm completely faded by lunch time and needing more naps. So mixed blessings, and we'll see how it plays out.

I know three weeks is really brief to decide whether being gluten-free helps. But I've heard that people with celiac and gluten-intolerance generally start seeing some definite improvement very quickly, sometimes in a matter of days. So while I think there's still a chance that I have a gluten sensitivity, I'm very doubtful that it's celiac.

I'm trying not to get my hopes up that I'll get a definitive diagnosis after the colonoscopy on March 3. But it's tough not to hope ...

Monday, February 22, 2010

Relationships & Chronic Illness

I've written before about how my chronic mystery illness affects my primary relationships, those with my husband and daughter. But I wanted to contribute to the new Health Activist Blog Carnival, which you can read about over here, so I thought maybe I'd examine a different type of relationship: friendships.

My relationships with people have changed so much in the almost three years since I got sick and never got better. My world has shrunk, and my friendships have shrunk too. I've never been one of those people with dozens of close friends. I still have plenty of acquaintances, but real friends? The people I can call any time and will drop everything to help me out? Not so much.

I think it hit home for me when my weird intestinal problems started in January. It was incredibly painful, but while I got a few sympathetic posts on my Facebook page, no one local called to see if there was anything they could do. Not even the support services person for my MOMS Club chapter, which I've been throwing away dues money on for the past few years.

I find it interesting that although I felt painfully isolated early in my illness, I don't feel particularly isolated at all anymore. I don't know if that's because I have lost track of how unconnected I am with my local community, or if the online connections I've made with the chronic illness community have replaced my need for a local support system beyond my immediate family. I'm guessing it's the latter, but it could also be a combination of the two.

Meanwhile, I'm not sure how much of a friend I've been to the folks I've had in my life, either. Friendship is a two-way street, but I feel like I need to save my limited energy for Scott and Ellie, and there's never much left over to offer to anyone else.

So for those of you dealing with chronic illnesses, how have they affected your friendships? How do you stay a part of your friends' lives if you're not able to get out and socialize with them? Do you force yourself to get together with friends even if you're feeling flared?

Tuesday, February 16, 2010

GI Update

Be grateful that I'm showing you all my new bling instead of the photo I showed my gastroenterologist when I saw him on Monday. :-)

Yep, I photographed my bloody diarrhea, and then put it on my iPod to bring with me to my appointment. And unlike my husband, my doctor was actually happy to see it because it showed that it wasn't bright red blood, but darker and therefore a little farther in.
Anyway, Dr. C confirmed that he definitely wants to do a colonoscopy on me to see if he can determine what's been causing my GI issues lately.

He says there are several things he will be looking for signs: ulcers, diverticulosis, inflammation, scar tissue, etc. Since I have a history of peptic ulcers, it's possible to get them in my intestines also. There's also a possibility it's ulcerative colitis or Crohn's disease, both things I've read about online and knew he would be looking for signs of. I was a little surprised when he told me that lupus can also cause these symptoms and problems. I knew lupus can attack anywhere in the body, but the most common places it shows up are the kidneys, lungs or skin.

I asked how he would differentiate between, for example, an ulcer caused by lupus versus damage caused by ulcerative colitis. He says biopsies are the only way to tell, and apparently they can differentiate the cause of an ulcer (sometimes) by the cellular architecture once they get the biopsy into a lab.

I'm a little worried that by the time I have my colonoscopy on March 3, there won't be any sign of what was causing the problem, or exactly where it was located. And Dr. C says that happens sometimes, that the colon has healed by the time they get a look at it. So I'm torn between hoping that I'm close to being healed and hoping my problems last long enough for him to get a good look at and biopsy.

He also is going to do a regular endoscopy on me, looking at my stomach and duodenum because I've been having really bad reflux since my trip to the ER last month as well as increased stomach pain. I don't think it's bad enough to actually be a new peptic ulcer, but I'd like to know if I'm heading that direction again.

On the good news front, I've lost 13 pounds since my tummy woes started on Jan. 6. I'm finally just about rid of my last round of Prednisone poundage, and I can see my cheek bones again. Woohoo! :-) (Of course, with my luck that means I'm due for another round of Prednisone since it seems like every time I take it off, I get put back on it. Sigh. And my lungs are junky, and my internist has been threatening it again...)

Oh, and that bling up top? That's an amethyst we bought for a song while honeymooning in Brazil back in 2001. For the last few years (maybe even 5? I've lost count ...), Scott and Ellie have been buying the teeny-tiny diamonds for me one by one for each occasion (birthday, Chanukah, etc). The jeweler who made the pendant for me also made my engagement ring and both our wedding rings. When I received the insurance settlement for my 2006 uninsured motorist accident last fall, I told Julie that I was finally ready to get the piece made. And I picked it up today. Wow! It looks so much more sparkly than it did before those stones were set!! Now I just need a place or occasion to wear it ... :-)

Oh, and I've officially made it two weeks of being gluten-free. :-)

Saturday, February 6, 2010

Eating Out, Gluten Free

I am so grateful that if I have to go gluten-free, I'm doing it now and not 20 or more years ago.

Everyone is so much more aware of celiac disease and gluten sensitivity and food allergies in general these days. Pretty much all grocery stores have some gluten-free foods in a special section, no matter how small, plus there's all the stuff mixed in with regular items that are coincidentally gluten free.

And the Internet is such an amazing resource, from the various blogs to the people finding my personal blog and offering advice and support.

Ellie went to a birthday party today at Safari Sam's, a cool place for kids to play. Afterwards, the parents invited folks to join them at Red Robin, a "gourmet" burger place, nearby for dinner. I knew Safari Sam's would be too much for me if I went. I get easily exhausted from overstimulation, and that place is definitely stimulating! I kind of wanted to meet everyone for dinner afterward, but I decided they wouldn't have anything for me to eat there anyway, so why go and be tempted to eat gluten?

Luckily, Scott called from Safari Sam's and put the birthday boy's mom on the phone to talk me into coming out for dinner. And I couldn't resist Jane. :-)

And that's where my love of the Internet comes in.

I googled "Red Robin" and gluten-free thinking I'd find a blogger who'd written about eating there and would be able to get some advice that way. But even better, Google took me immediately to the company's official menu of gluten-free foods, specifying how to order items to be gluten-free. So I printed out the three pages and took them with me.

Of course, I looked at the regular menu and wishfully asked the server if the chicken rice bowl was gluten free. Nope. Server wasn't sure exactly what had gluten in it, but she said if it wasn't on my doc, it definitely had gluten. (The document had been revised on Jan. 26, so it was clearly up to date, and warned that it was only good through March 10. They obviously are taking this seriously as a corporation.)

So I ordered the Apple Harvest chicken salad, following the directions to ask to have the candied walnuts, bleu cheese and dijon vinaigrette held off. I got a different vinaigrette (that was labeled as gluten free) on the side. It made me laugh to realize that, except for the necessary change in salad dressing, that was how I would have ordered that particular salad anyway: I'm allergic to nuts and I hate bleu cheese. :-)

I also knew, thanks to the gluten-free menu I'd printed that if I wanted any french fries, I needed to ask for them without Red Robin's special seasonings. Plus the document warned that the restaurant couldn't guarantee that there wouldn't be cross contamination in the fryer. A little disappointing, but not surprising. And I never would have guessed there would be gluten in the seasonings they put on the french fries, so I was very grateful to know that.

When the food came out, the manager on duty, Matt, brought my dish while servers brought everyone else's. He wanted to tell me the lengths the restaurant goes to in order to be safe for people who can't have gluten. They have special dishes for gluten-free meals to make them easily identifiable. The cooks, he said, have all been trained how to avoid cross contamination. And their company policy is to have a manager talk to anyone who requests a gluten free meal.

I found that really impressive. (Although I also sort of wished they hadn't made a big deal of it when I was with a large group, many of whom I'd never met.) I liked that they're making an effort to cater to folks with dietary restrictions, and to help make people with gluten sensitivities feel a little safer eating at their restaurants. (There's always going to be risks of cross contamination unless the entire restaurant only serves gluten-free foods.)

Matt the manager also told me that PF Changs has a list on the back of its menus highlighting gluten-free meals. I haven't been there, but I guarantee that if I stay gluten-free on an ongoing basis, we will definitely go there too eventually.

So I'm definitely feeling the love for the Internet in general, and the folks who paved the way to make being gluten-free much easier than it could have been (and was in the not-too-distant past).

(I probably don't need to mention this but, just in case, I fully paid for our meals and did not receive any compensation from Red Robin or anyone else for this post.)

Tuesday, February 2, 2010

Day Two Gluten-Free

What I'd give for a bagel, toasted and buttered ...

I actually almost forgot myself this morning when I came downstairs after a rough night. I grabbed the newspaper from the front porch, where Ellie leaves it for me, and came into the kitchen, hungry, and thinking about how good my morning bagel would be.

Except, of course, that I'm on my second day of a gluten-free trial.

I still don't have a good breakfast figured out, especially since I have to take my antibiotics two hours before or six hours after having dairy products. (That makes it challenging to eat yogurt.)

Yesterday, I bravely tried one of the gluten-free freezer waffles my neighbor, Joan, had given me. She warned me that her son, Andy, refused to eat them and only wanted fresh waffles off the waffle iron. I figured he just had good taste, since who wouldn't prefer a freshly made waffle to one that had been mass manufactured and frozen?

When I opened the package, the smell alone was almost enough to put me off, but I persuaded myself that once I toasted them, buttered them and smothered them in cinnamon-sugar, they could be made out of newspaper and and I would like them.

I was wrong.

Strangely enough, the waffles did taste like a wad of cinnamon-sugar-covered newspaper ... and the cinnamon-sugar was not enough to persuade me to take a second bite. Bleh!

I ended up eating a banana and some cheese and (rice) crackers for brunch yesterday. The crackers also smelled suspicious, but luckily with a small square of Tillamook Vintage White Cheddar Cheese on top, it turned out to be a tasty breakfast. (I stopped eating orange cheddar cheese in college when I learned during a semester in England that American cheddar is only orange thanks to food coloring. But the Tillamook Vintage White is by far my favorite American white cheddar.)

With my limitations on not eating fresh fruit or veggies while my intestines continue to bleed, it's been challenging to find things to eat that satisfy my tastebuds and my tummy. I know I'll get there, but it's challenging.

For anyone else struggling to go gluten-free, a friend sent me to GlutenFreeGoddess, which has a great starter guide with advice for finding one's way through the maze of switching to gluten-free as well as recipes and such. There's also a good Quick Start Diet guide at the Gluten Intolerance Group's site. I also liked their "easy to find, easy to fix" list of things you can eat safely while you're in transition.

Again, I'd love feedback and advice from folks who are also going down this path or have done recently enough that they remember what it was like at the start. What do you eat for a gluten-free breakfast?