The Absence…

So a fellow gimpy colon contacted me and asked how I was doing. I told her I was fine… actually… fine… “fine” is one of those words that we’re all kind of afraid to say because “fine” could trigger a karmatic reaction that causes a fabulous dinner date with the Farmboy to go completely awry. So we say something more along the lines of “holding up” or “I’m gonna make it!”. Don’t worry… we’re fine.

I haven’t been here for a while, perhaps because I’ve been “fine”. No really, I’ll say it. I’m down to 1mg of prednisone, I’m totally off that blasted Entocort, and my last Remicade infusion was rather enjoyable. I’ve actually gone as far as to make plans to visit with friends and family during the summer (which unfortunately is almost over for us.) and I’m looking forward to going to soccer games and tournaments for my son which any gimpy colon knows is a crap shoot (ha ha…get it?).

Oh, before I forget, thanks for the cards and flowers and baskets filled with biscuits for Randal. He would say thank you, I’m sure, but… you know.. he’s a dog. Randal’s colitis is much better and he is running around happily like the sweet pooch that he is. He spent about two weeks on a bland diet of ground chicken and mashed up rice along with four medications and he really is good as new. We do have the medications in the cabinet in case of a flair for poor Randal. But he hasn’t needed any of it so far.

Since I’ve been feeling so much better, I thought maybe a good use for this blog is to take it to the streets. I’ve perused through some Crohn’s message boards lately, and I noticed how many people are asking questions about the colonoscopies, endoscopies, the Remicade infusions, the CAT scans, etc. I’m wondering if I should do some play by play of these tests, to help these folks out. They all seem so concerned…worried.. heh.. just like me when I first went through all of this stuff.

Anyway, those are my thoughts. Today’s glutie award goes to the people who make peanut butter cups… I know you didn’t mean to, but thanks for making those things gluten-free… I’m sure you talked a few celiacs off the ledge with that move…*

Be well everyone!

*Before a mad pack of gluten-free people get all torchy and pitchforky on me, I do realize that not all chocolate and peanut butter products are gluten-free or made in gluten free factories…but I don’t feel like naming names tonight.. so there’s the disclaimer.. I wish you people would calm down.

The Genetics…

The title of this entry is more of a joke… why? Because another member of our family has been stricken with colitis… it’s really quite tragic…it’s my poor dog Randal.

Randal has been a member of our family for 2 years now. He’s a three year old Jackhound (not a real breed). He’s a Foxhound-Jack Russell mix. There is an actual hybrid called a Foxy Russell but I can’t say that without commenting on what a stupid hybrid breed name that is. So he’s a Jackhound.. lets just settle that.

Poor Randal was rescued from a puppy mill (or so the story goes). When we first brought him home, we knew that he had been confined for probably most or all of his life. When I took him for his first walk, it happened to be garbage day and he stopped and barked and every bag of garbage. He has attacked the lawn mower, the leaf blower and the vacuum cleaner. All while they were turned off and just sitting there. So suffice to say the pup had some issues. We’ve conquered a bunch of his issues, but one still remains… he has what all the dog experts call “fear aggression”. We currently have a trainer working on that with us which brings me to this colitis thing…

The trainer, we’ll call her Michelle… because that’s her name, wanted us to take Randal for a brisk walk for about an hour per day, keep him out of Farmboy’s and my bedroom, and work with him on keeping him occupied with dog games. Randal probably could handle Uno, but I think he’s frustrated because he doesn’t have any hands. Such as it is, we put his dog bed out in the hallway, and shut the door to the bedroom. He woke me up 7 times on Sunday night and 3 times last night, with scratches and little barks that he likes to do to gently wake people up. Randal is very considerate.

So yesterday, he started with the diarrhea, today, he was shivering and seemed to be warmer than he usually is and then the vomiting started so we called the vet, brought him in and TA-DA!!! Colitis…

So three medications and a new diet later, hopefully we’ll have a healthier more happy Randal. I know just how the poor guy feels. I asked the vet why he doesn’t get steroids for his colitis.. she said “oh steroids are murder on the body”… Really… huh… didn’t know that… she also said that the colitis might be triggered by the stress of the training and walks and stuff.. “you know… stress can trigger colitis” And so it goes…

Onward!

The Entocort Farewell…

Well, I had a crappy week last week. Tuesday was my last day of Entocort (another steroid that targets just one area of the colon) I hate, hate, hate what steroids do to me. This past Wednesday I woke up and basically sifted through this unbelievable fog. I managed to get the boy to camp somehow but then came home and ended up in bed sleeping… all day… and then I woke up and had the worst headache I’ve ever had in my life. If you Google “Crohn’s Disease” you’ll come up with a list of symptoms. I had all of those symptoms including a few that weren’t on the list like the desire to fling myself out the nearest window, if only I had the energy. Thursday was almost exactly the same. We called the GI doctor. His nurse said and I quote “that wasn’t supposed to happen”… always fun words to hear. Although, I don’t think I’ve had a typical run of this whole Crohn’s thing, I’m thinking going off the steroids has caused the most consternation with my buddies in the medical world… I’m sending my blog address to the writers of “House”. Perhaps Hugh Laurie can figure me out.

So sometime on Wednesday evening, I picked up my Droid and put a status on Facebook that said something the effect of “Worst Crohn’s fail ever… somebody please kill me”. That status caused more than several phone calls to my house and an almost completely stuffed e-mail inbox… sorry ‘bout that… I’ll try to keep the Droid away while I’m hallucinating. I totally dig the love though.

Anyway, Friday I was a bit better… Saturday I was even better, and that was mostly because my kid just discovered the game Uno and we played that basically all day. I still deal with nausea, I’m not sure where that came from. I basically made it through Sunday with nothing but a communion wafer (gluten free). Yesterday I woke up and ate an omelet with some meat and cheese in it… that went well. So I’m much better now. Today, I am Entocort-free and down to 3mg of prednisone… I haven’t measured my head lately, but I think it’s a little smaller… not in the African head shrinking kind of way, but in a less prednisone kind of way. My hair is still all over the floor though… May the Lord bless and keep those Merry Maids.

Be well everyone!

The Taper…

Well it’s official, I’m getting off all steroids once and for all!!! Woot!

I was already tapering off Prednisone at an incredibly slow rate, as in 1mg for every three weeks. I was set to be completely off Prednisone on August 29th… of this year…

Today on our usual walk to the coffee shop for our Tuesday lunch, we stopped by CVS Pharmacy to pick up a couple of prescriptions. Let me preface this by saying that my insurance ran out on May 31st and starts again on June 1st. We have health insurance through Farmboy’s business and it’s one of those high deductible health plans with a health savings account. Normally, healthy people should have these plans, and not freaks like myself, but after last year, I decided that doing one of those 80/20 plans would make me crazy. I have a $2,500.00 deductible and after that is paid, everything is covered. So last year I blew the deductible on one trip to the emergency room and everything after that was covered. Now we are starting again…

So I made sure that my last Remicade infusion took place on May 31st so it was completely covered (that is about $4,000 a pop)… today I’m in CVS looking at a 30 day supply of Entocort costing $1,400.00. Needless to say I wasn’t expecting that and wondered really quick whether or not I actually needed $1,400.00 worth of anything.

I ran home and called my GI doctor and asked him if this Entocort stuff was really worth anything.. I mean really… how about we try to taper off that stuff… I’m already walking around with $4,000.00 worth of nuclear waste (Remicade) in my body… why do we need to bother with this other stuff? He agreed and started the taper. I should be off of this stuff by the end of this month.

So now I’m on a taper off of the Prednisone and the Entocort. For those of you keeping score at home:

Prednisone – 4
Entocort – 2

Today’s Glutie award goes to CVS Pharmacy… nice pharmacy people, they know me by now and they are nice enough to say.. “Hey, you might want to call your doctor and see if you really need this stuff… it’s crazy expensive”

It’s nice to see them every Tuesday when I go and pick up my meds.

Cheers!

The Annoying Customer…

I’m feeling better! Thanks for asking!

I’ve been having some frustrations with some local eateries that are claiming to have gluten-free foods and have them, but it turns out for one reason or the other, the gluten free food they do have is also not Crohn’s friendly either. Hence, I have to ask a zillion questions and sometimes be really overly direct about the contents of every dish they might have.

Just to review, my diet consists of NOT having fresh fruits or vegetables, anything with gluten (which basically means no wheat) and very very little fiber and if I can help it, no fiber at all. Although some cooked vegetables do go through without notice by the gimpy colon. So far we have cooked potatoes (read: French fries). Apparently the French fry has some sort of paperwork that can be shown at the entrance to my stomach which allows proper digestion through the gimpy colon. I don’t know why potatoes work, but I’m not going to complain.

So anyway, for example, we were at a restaurant the other day (I won’t say the name, suffice the name rhymes with “Molive Marden”) and they have a gluten-free menu. I asked if they could make me a ziti with gluten free noodles and instead of the marinara sauce, could I have the Alfredo sauce and cheeses and yes, I’m aware that the Alfredo sauce probably had gluten in it but I was willing to take my chances being that it was the Friday before Mother’s day and I had a hankering for ziti.

So the waiter (nice guy) says that the gluten free pasta is already mixed up in a special bowl with marinara sauce. I said that I couldn’t have marinara sauce and so I ended up ordering a steak and mashed potatoes… my third steak and mashed potato order from a restaurant in a row.

So many minutes later (and we weren’t in a hurry or anything and quite frankly, Farmboy and I have a tendency to yak yak yak and lose track of time pretty easily), the waiter comes back and tells me that they had to throw my steak away because it was touching some vegetables so they were going to cook me another special steak and should he bring the other food out right now? I felt bad, because I obviously wasn’t clear about my situation, and made them waste a steak, but I wasn’t about to say “you know what? Dig that sucker out of the garbage.. I’ll have it anyway.” I’m not allergic to vegetables, I just can’t EAT them…

So a bit later, the manager came out, was very apologetic and told me that my steak would be comped and so was our dessert. Which is funny because I couldn’t eat anything on that dessert menu anyway, so Farmboy was happy. Good for him.

I haven’t run into anyone who isn’t completely annoyed with my questions (or appeared to be) but I’m starting to get really annoyed at myself and rather than attempt to go out somewhere, I just snap the cap off another Ensure and guzzle away.

Well that was fun… on to this week’s Glutie Award… and back to the restaurant rant… Anytime I go to a restaurant, I usually have to bring some kind of bread with me or else I will be stuck eating something like a hamburger without the bun, which unless you are one of those freak “anti-carb” people, is not a happy meal… luckily, there’s the Grainless Baker…

Where would I be without the Grainless Baker hamburger buns? They also have hot dog buns which I imagine taste similar to the hamburger buns… good stuff. I hear they also have French baguettes… which I am actually afraid to try since I dislike being teased.

So congratulations are in order to the Grainless Baker.. if you run into the Grainless Baker whoever he or she might be, give ‘em a high five for me…

Cheers!

The Side Effects…

Sorry everyone! Time has not been on my side lately. We had 24 people here for our Easter celebration which was a lot of fun, but lots of work. On a good note, I’ve been improving pretty much all around. I can’t tell if I can attribute that to the medications, or the diet I’m following… Basically, I’m drinking about 4 Ensures per day and eating 1 meal of mush. Every weekend we go out to a restaurant and that’s only challenging if I don’t bring along my gluten-free bread. Honestly, I’m not hungry and my guts do feel better. It seems the less I eat, the better off I am.

To be honest, my comfy place is with the Ensures. It’s interesting to eat a meal and make bets with myself as to whether or not I will have pain later on. Sometimes I just know that I’m in trouble and rock the pain meds beforehand. It’ll be a miracle if I get to heaven and NOT be a pain med addict. At least I’m nice about it.

I’ve got two really exciting side effects that I would love to get rid of. The first one, I’m told is a side effect of the prednisone (damn that stuff!!!) and the other one, I’m told is a side effect of Crohn’s Disease itself. The first one is that I cannot eat or drink anything that isn’t 98.6 degrees unless I have a straw. Anything that’s too hot or too cold sends me into orbit. My teeth can’t handle it. I’m not kidding… I have been drinking bottled water, but I don’t refrigerate it because my teeth can’t take it. I HAVE to refrigerate Ensures because they don’t taste so special at room temperature… for those interesting situations, I have my big box of straws. I had to cancel a dental appointment for next week because I am NOT going through a cleaning in my current state. It’s that bad.

The second one is way more fun. My hair is falling out! If you see me with a pony tail or a hat, it’s because I’m going bald. Nice huh. Every morning I brush my hair, go get dressed and come back to clumps of hair that settled all over the bathroom sink, the floor, all over the place. It’s lovely. The upside (there’s ALWAYS an upside) is the leg shaving is at a minimum. I’ll bet you wish you were me!!!

I asked some new internet friends what the deal was with the hair loss… they said it happens to us all.. it’s a Crohn’s disease thing. So let’s review… big fat giant basketball head, with no hair, and teeth that can only handle room temperature food. That’s Miss America stuff right there… too bad I’m married… I would have that competition in the bag.

But enough of that, on to this week’s shout out! Congratulations to The Spa at Hotel Hershey for this week’s Glutie Award! Every year on or around my birthday for the past five or so years, I would treat myself to a massage and a pedicure at a local spa. Last year, a friend and I discovered that our birthdays were very close and that we should try the Spa at the Hotel Hershey. The Hershey Spa has packages so you can get a massage and a pedicure and they have a buffet area where you can eat lunch in your spa robe. I LOVE, LOVE, LOVE this place. Now I love it even more hence the shout out. I called them a few days before our appointment and asked if they could accommodate my gimpy colon. They said they could and asked me what I would like to have for lunch. I told them my diet requirements and gave them carte blanche…

So after my fantastic massage, we went down to the Oasis Café, and there waiting for me was a yummy turkey sandwich on some nice gluten free bread and this potato salad that was so delicious I could go on and on… but I won’t because I don’t want to drool all over my keyboard. Then there was a flourless chocolate thing that … well, no need to go on… it’s HERSHEY… all gluten-free and all delicious.

Definitely put The Spa at the Hotel Hershey on your bucket list if you haven’t already been.

Onward and upward!

Cheers!

The Shoutout…

My health has been poor lately, so I’ve been on a liquid diet since Monday. It’s mostly pain and so, since I’m not exactly malnourished, my GI doctor allowed me to go on Ensures and applesauce to give the gimpy colon a rest. I do feel better with just the Ensures, but it is a tad … sad… that I make actual food for the boys and I get to drink my meals out a bottle… I’m all for a comfy colon though.. so I shouldn’t complain.. but I will anyway… poor, poor, gimpy colon.

But enough of that… I have a few shout-outs I want to do. I’ve gone to several restaurants in the area and also grocery stores with my crazy diet requirements in hand… no fresh vegetables, no fresh fruit, no gluten, no nuts, no seeds, no fiber, no popcorn, no sex, no drugs, no wine, no women, no fun, no sin, no you, no wonder it’s dark…. (That’s a shout-out to my biggest big brother.)

Here’s a shout-out to Pamela’s Products and Giant Grocery Store. Giant is one of our local grocery stores. About a year ago, they opened a new one which has a whole section for freaks like us. Gluten-free, egg-free, dairy-free, all that stuff. There’s a whole row of gluten-free stuff and one of the more yummy lines is Pamela’s Products. Giant has most of Pamela’s products which are currently my favorite of the “mixes”. Granted, I’ve only been gluten-free for a short time. Pamela’s pancake and baking mix has been consumed by the gluten eating men of the house (read that as, they didn’t notice that it was any different from any other pancakes)… Farmboy totally digs the chocolate chip cookies made from Pamela’s pancake and baking mix. I haven’t tried to make the muffins or any of the other recipes on the package, but I keep a package of Pamela’s mix around just in case….. I start eating real food again.

Giant also carries Foods by George which is where I got my very first gluten-free English muffin. I’ve mentioned before that the gluten-free English muffin as created by Foods by George looks and tastes nothing like an American English muffin. I confess, I’m lame and I don’t know what a real English muffin looks like or whether English muffins come from England or if it’s like French fries and only Americans make up these foreign names for things. Last time I was in Europe, I was three. Cut me a break…

…Wait a minute… why am I admitting lameness? I have google… AND Wikipedia… and here’s what I’ve found since I’m so brilliant with search engines… The English Muffin does come from England and back in the 1700s they called it a moofin… which is hilarious. I couldn’t read any more after moofin. I don’t need to know anything more than moofin.

Anyway, like I said before, Foods by George English moofins… taste and look nothing like a regular English moofin. In fact, if I were to do the Pepsi challenge with English moofins by George, I would have to go with biscuit. Not ENGLISH biscuits… I know those are different. I’ve seen Upstairs/Downstairs. But regular American biscuits. So every morning, I eat an egg with some kind of gluten-free spread and a moofin by George. Here’s the package… disregard the spelling of the word “moofin”. I’ll have to have a talk with George about his spelling skills.

Shout out #3 goes to Betty Crocker who has a whole line of make yourself box deserts that are gluten-free. You can get yellow cake, devil’s food cake, chocolate chip cookies and brownies. You can even find them in the baking aisle at the grocery store so I got to feel like less of a freak for about five seconds. I bought and baked a chocolate box cake by Betty herself. I haven’t tried it yet, but I have tried the cookies. They’re good and totally passable as gluten-filled. In fact, I’m starting to wonder why the world needs gluten.

I have a couple of other shout outs but I’m low on time these days. I’ll have to break it into another post.

Cheers!

The Turkey Box…

Yesterday, I had my fourth Remicade infusion. Remicade is one of those drugs that can best be described as nuclear waste… or poison. It’s basically a bio-hazard, and I get to send it racing through my veins in hopes for a remission from Crohn’s disease. Here’s how it works:

(From http://www.remicade.com) The immune system protects the body by responding to “invaders” like bacteria, viruses, and other foreign matter that enter your body by producing antibodies and putting them into action to fight off the “invaders”. In Crohn’s disease, TNF can cause your immune system to attack healthy tissues in your body and cause inflammation and damage. If Crohn’s is left untreated, it can cause permanent damage to the tissue in the digestive or gastrointestinal tract. Remicade helps put Crohn’s into remission by neutralizing TNF-alpha. Remicade is therefore called a TNF “antagonist” that works with your body’s immune system to block TNF-alpha, reducing inflammation. Remicade targets, binds to, and blocks TNF-alpha in the affected area to relieve painful symptoms of Crohn’s.

…or so that’s what’s supposed to happen…

I was put on Remicade pretty much right off the bat back in December. It’s a crazy expensive drug (about 4k per infusion) so I had to get permission from my insurance to get the infusions. They made with the permission pretty quickly, which always makes me wonder if I’m sicker than I actually feel. So every 8 weeks, this is what I do:

I go down to the local hospital (the one smack in the middle of the city) and go to their Medical Outpatient Unit or MOPU which they pronounce “MOP-YOU”… which I think is kind of cute. The MOPU looks like a big blood bank with those big comfy chairs. No cookie table in immediate view though which was always my blood giving incentive. Each room has four chairs in it (or beds, I think the beds are for the chemotherapy and the more poisony treatments). 1 hour before my appointment I have to call in my weight which is always SUCH A TREAT… you know, being on prednisone and everything… When I get to my appointment, my Remicade is all mixed up and ready for me. I get one of the chairs, which reclines, a remote control and tv that has more cable channels than I have at home, and of course, I always have my busy bag with a collection of readables. The nurse then checks my vitals, blood pressure, checks the lungs, all that good stuff.

After that, nurse starts an IV, flushes some nice saline through, and hooks me up to the Remicade bag. Then, and this is the best part, the nurse asks me if I need anything. That’s when I say “YES!!! I’d like the turkey box please”.

During my first infusion, the nurse asked me the same question, and I asked her what she had, and she went through this heavenly list of things… cookies, chips, sodas, and of course the turkey box. I don’t think the appeal of the turkey box has anything to do with actual taste. I think it’s a matter of someone actually bringing it to me. The turkey box is a turkey sandwich on a roll, with a little cup of applesauce, coleslaw (which I’m not allowed to have anyway) and two graham crackers… AND little condiments… and I’ll just point out right now, that I’m the type of person who likes airline food… and I think it’s also because someone brings it to me rather than me having to go and get it myself. I’m also a big fan of clever box lunch packaging.

So for two hours, every 8 weeks, I get to watch whatever I want on TV… eat my turkey box, and sit with my feet up. If there were spa treatments involved, we’d be on to something here. Yesterday, I watched an awful episode of Kate Plus 8. It’s the first, and hopefully the last time, I ever watch the show. Sometimes I have a person next to me, sometimes I’m all alone. My second infusion involved an elderly lady who REALLY liked to curse, and amused me for the entire time.. as in “I should have been dead years ago… now GET ME SOME SALT!!!!”. Most of all though, it’s two hours of absolutely nothing but sitting.. no one needs to be let out, no one needs dinner… if we’re out of whites… it’s really not my problem, not for two hours… that actually makes it worth it to be injected with poison.

One of the things they make you do your first time out is stay and make sure you don’t have any side effects. I didn’t have anything notable happen the first time out, except being tired afterward. The second and third I was tired and yesterday’s actually went OK. I didn’t feel horribly tired, and my pain decreased a bit.

Is it working? I have no idea. I hope so. I actually like the possibility of having something injected into me that is actually helping. I do feel better than I did a few days ago, so maybe it is working.

If the doctor takes me off of Remicade, I’m going to REALLY miss the turkey box. I suppose I can make up my own turkey box, but it won’t be the same.

My next spa.. er…um… Remicade treatment is in 8 weeks… woot!

Cheers!

The Bizarro World…

Maybe I should say.. The Opposite World.

A few days ago, I got a phone call from my Endocrinologist’s office saying that there was a cancellation and I could come in to see him on Friday (which by the way, is today). I was told that when I did come to see him, it would take about 3 hours total from start to finish. I was also told that he is thorough.

So I collected magazines for my busy bag and headed off to the endocrinologist today at 10:05 a.m. I finally actually got into the room at 11:20 a.m. and was seen somewhere around 11:45ish.

Dr. Endo is a nice guy, likes chit chat, and likes to tell you what is crap and what isn’t. Very direct… and it turns out, super thorough. He wanted to know my entire story from start to finish, from me, even though all of the information, my hospital visits, pictures of my insides, blood test results, notes from three different doctors are all right in front of him on the computer. Long story short, it turns out that my cortisol problem may be a problem and may not be a problem. First, I have to wean off of prednisone verrrrrrrry slowly. According to my calculations, I won’t be off prednisone until August. After that point, I have to take a test to make sure I’m actually producing enough cortisol. Apparently, there’s a difference between making enough and making what you are supposed to make. So we’re going to find out about all of that in October. If I’m not making enough cortisol, then I’ll have to take a pill. You know… more pills.

The reason I call this post The Bizarro World or should call it The Opposite World (but I think that the Bizarro World episode of Seinfeld fits better), is because ever since I was diagnosed or sometime after I was diagnosed:

1. I was told that I cannot have fresh fruits or fresh vegetables.

2. I was told to “try” not to even have any cooked vegetables. You know, if I happen upon a pile of cooked vegetables and I fall over and some of it accidentally falls into my mouth, it’s not a big deal, but try not to let it happen again.

3. I was told not to have anything with a lot of fiber in it. Two grams of fiber was too much fiber. Did you know that EVERYTHING has fiber in it? It’s all the rage.

4. I was told that my dramatic weight gain due to the prednisone pleased the doctor… pleased him. So many of his Crohn’s patients are so thin and malnourished. I have room.. ROOM to I guess feed off myself before I get really sick…. I dunno… I’m in a strange part of the planet where fat is good. Bizarro world.

5. See number 3 for emphasis…

6. I was told to “try” not to go to the gym too much because it would distrub the healing process. I can walk the dog around the block though.. but don’t get winded.

7. And today makes the list EXTRA bizarre. I was told (and I have it in writing for all you doubters) that if a salt craving comes along I am to give in and eat the salt… people who know me well, know that’s bizarre…

So if you add all of this stuff up, the inability to eat pretty much anything healthy, instructions to not exercise, and finally, my favorite… “Hey Gimpy! EAT MORE SALT”.

I know what’s coming next… “Hey Gimpy! Quit your job and play Mario Kart all day… it’s good for your colon!”

I have to go pick the kid up from soccer practice… let’s hope I don’t wind myself on the way to the car.

Cheers!

The Upside…

Whelp! The cat scan (meow!) came out pretty well if I do say so myself. It looks like the medicine is working. I just have some issues with the lower right side (where my appendix is) where I still have pain. It’s called the terminal ileum for all you google freaks. My GI doctor said that there are probably adhesions there and that it’s going to be a wait and see situation. Lucky for me, it’s a very popular place to have Crohn’s disease and there are a few options. Surgery is the very last option by the way. Right now, we are going to concentrate on the medications, specifically the Remicade. I have my fourth round of Remicade this Monday and I’m hoping I feel more of a change. I hear that after the fourth or fifth round, there should be some sort of improvement. Meanwhile, we are adding another medication to the bucket. I think this makes an even 10 meds. I’m now on more medications than most grandmothers I know.

After a little over a week gluten-free, I am definitely feeling better in the stomach. I can’t speak for the rest of me though. Yesterday, I had another cortisol fit and fell asleep at my desk at least four times. Then, after work, I went straight to bed. Then I had trouble sleeping… then I was fine today. I mentioned all this to my GI doctor when he called and miraculously, I was called today by my brand new endocrinologist who will see me at the end of April, which I might add, is way better than the end of November when I thought I was going to meet this guy. I was told that November was for the not-so-urgent people… which I guess makes me urgent. Yesterday, I felt urgent. Today… not so much. My GI doctor and I had this plan where I was going to go off Prednisone 1mg at a time as opposed to 5mg at a time. But maybe that plan will change when I see the endocrinologist. Should be fun stuff.

Anyway, back to the gluten-free stuff which is where the title of this post comes from. It’s been working out. We have this little coffee shop that is walking distance from our house. Every Tuesday, Gimpy and Gimpy’s husband (hereinafter referred to as “Farmboy”) stroll down to the coffee shop for lunch. I used to get this fantastic mushroom brie soup that was TO DIE…. I also got half an egg salad sandwich, and then three sugar cookies with the yummy colored sugar topping. Delish! But now, since the soup has the rue, the egg salad has the bread and the sugar cookies have… gluten… I have to switch everything around. I knew that the shop didn’t do gluten-free stuff yet (they are kind of new). I got a gluten-free bread mix from the grocery store, made the bread in my bread maker, froze it, then grabbed two pieces of bread and brought them to the shop. They were happy to toast my bread, and put egg salad on it. Couldn’t do anything about the mushroom brie soup, but that’s OK, because they didn’t have any today anyway, and then… THEN… I got a hot chocolate with that fuzzy squirt milk they shoot into cups… I don’t know what it is… like a latte? but anyway, have a hot chocolate with fuzzy squirt milk… mushroom brie who? Sugar cookie what? After lunch tummy felt good and I went on with life.

Tummy would be happier if Farmboy wouldn’t keep eating my homemade gluten-free cookies. Really puts a damper on things. You know, you open the drawer and… D’OH!!!

Until next time people..

Cheers!