The Gimpy Colon*

*No, it's not another trendy bar.

The Latest… (Part Two)

So.. moving right along. …

I had another colonoscopy this past August.  This scan actually looked worse than the scan I had when I was first diagnosed.  It kind of proved that Humira was not making things better, so I have been switched to Cimzia which I started two weeks ago.

Cimzia is also a shot.  A really painful, sort of freaky shot.  As I mentioned before, I wondered why Humira was a spring loaded shot.  It’s probably spring loaded because the maker of Humira saw how they administer Cimzia and decided not to scare the crap out of people.    The needle for Cimiza is about an inch long and is visible, which is not the case with Humira.  Humira looked like a giant highlighter pen with a button on the top.  You just put the end of the pen on your stomach and press the button.   I saw nothing.  I felt pain.   It is a spring loaded shot after all,  but I saw nothing, which apparently makes all the difference.

Call me a wuss, but the minute the nurse pulled out the needle to the Cimzia shot, I blanched and told her that I was absolutely sure that I could never poke myself with that thing.  Not only that, the loading dose for Cimzia is one shot in either side of the stomach or thigh, so I would have to poke myself twice.  To make it even more fun, Cimzia has the consistency of jello.  So you have to flick the needle to watch a little bubble rise to the top, and then when the needle goes in, you have to press the plunger slowly so all that goo goes into the body.   THEN, you have to wait 10 seconds with the needle in your thigh and then you can pull it out.

Humira was doable… for Cimzia, I’m going to need a professional.

So off I went to find a qualified person to give me my Cimzia shots.  Talk about finding a needle in a haystack (get it?).  My GI doctor could do it, but after taking the first shot, I quickly found that I need to sleep after taking a dose of Cimzia, so best if I take it right before I go to bed.  I called my local express clinic.  They told me that I could only get the shots there if the attending doctor prescribed it.  I called my pharmacy, which was a long shot, but they do flu shots, so maybe they could at least point me in the right direction.  Basically they told me that, by law, they aren’t allowed to administer injections (except flu shots).  They even called around and thought up some good suggestions.  I ended up at my kid’s bus stop asking if anyone was a nurse or an LPN, or a diabetic or a heroin addict… or someone who is good with knives or needles, or pointy objects.

I finally did find a qualified person to administer my shot.  In the event it’s illegal for this qualified person to administer my shot, I’ll keep her name and affiliation under wraps… but know this…  I am eternally grateful to you, qualified person, for there’s no way I was doing this on my own.

My first shot of Cimzia was a little more like shooting up a sleeping potion than a medication given to calm down my Crohn’s Disease.  I took the first dose on a Thursday, was really sleepy Thursday evening, went to bed early.  Was ok on Friday probably because my kid’s birthday party was that evening and I had to be in tip top shape.  Parenthood will do that to you no matter how you are feeling.  Then Saturday, things got really fuzzy.  I somehow made it to Downingtown for my kid’s soccer games,  I actually don’t remember much about that ride.  Then I came home and slept until the following day.  On Sunday, I went to church, came home, and then proceeded to sleep and sleep and sleep.  But then Monday I was much better.  I contacted my GI about it and he didn’t have a definite answer as to whether or not Cimzia caused all of this or not.

The second shot was a few days ago.  I went to Qualified Person to have it in the evening so I can ward off this sleeping thing I have going.  It worked.  The next day I wasn’t very sleepy, but none of the Crohn’s symptoms went away.   So I may be injecting myself with jello for no reason at all.

Believe it or not there’s more … There’s MORE? You ask?  Yes, but I haven’t written it yet and I’m really trying to catch up here…

Onward!

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The Latest…

I guess a year and a half away from a medically targeted blog could mean so many things… or maybe just two things.  That the blogger is doing really really well and doesn’t want to talk about having Crohn’s, or that the blogger is doing really really bad and doesn’t want to talk about having Crohn’s.

For me, it started out that I was doing really well.  I visited my nutritionist, a SUPERHAPPYGALNAMEDJENNY.  Jenny was very enthusiastic about helping people who can only eat air and water come to grips with their lot in life.   I got a handle on the gluten free diet and honestly started to feel a little more like a healthy person.  Lost a little weight, felt a little better, walked the dog.   That lasted for about a month or so.  Then, a year ago, in July, things started going… dark.

It started with joint pain.  You know when you start working out again after a long stretch of time, and there’s that achy pain that goes through your joints the following day? Imagine that in every single joint in your body, every day, all day long, for no reason.  If you look at your hand, there are three major bendy places in each finger, two or three in each toe… I never gave much thought to any of that… until moving my pinky toe actually caused me to flinch.

I guess on the upshot, I have a very sedentary job, so it really only hurt to move the mouse around.   Other than that, I read… all. the. time.   I managed to start and finish the entire Twilight series (and watch the movies) The Hunger Games series, and of course, the Fifty Shades of Grey series along with all of the FSOG spawns.  Some of those were so bad, I actually felt worse for the author than for myself, which was what I was shooting for in the first place.  So it was win win.  I made it to Delaware to visit some friends, and luckily, they let me float around in their pool the entire time…  very nice for the joints.   I took a bunch of pain killers each night and hoped for the best.  But it was pretty pathetic and sort of sad at the same time.

At the time, I was still on Remicade.  (Note foreshadowing)  I told the nurses that hooked me up about the joint situation and they gave me that smiley face chart that tells them the level of pain I was experiencing.  I picked number six.  Which is like a sad face trying to be a happy face.

As the Remicade was dripping through (it takes about 2 and a half hours) I could feel my joints loosening up.  It was wild.  Kind of like when I was in the hospital two years ago, begging the nurse to kill me.   Whatever she injected into my tube was like some sort of magic juice.  So after every Remicade appointment, I would dance myself out of the hospital, happy and thrilled with my new found flexibility.

But then 4 weeks later it started again.  I would get the Remicade, feel fantastic, go home, and then 3 weeks later, the same thing happened.  I would gradually become an invalid.  It was a horrible, helpless feeling which went on for about 6 months.  I wasn’t happy or fun to be around at the time.  If you saw me during this time and I was just standing there, (or just sitting there), it’s because I couldn’t move.

Luckily, I have a stellar medical team who went to great lengths to figure out my problem… and figure it out they did.  I was diagnosed with drug-induced lupus erythematosus last January, which thank God, is not permanent.  The GI blamed it on Remicade and switched me over to Humira.   Unfortunately, I was informed that I would probably get lupus again because that’s what happens with these kinds of drugs.

Humira wasn’t as fun as Remicade. There’s no turkey box, no nice nurses to talk to, no two hours of uninterrupted, brain depleting, televised crap for me to enjoy.   Instead, it’s a spring loaded shot of medication straight into my stomach.  At the time, I wondered why they had to spring load it.  Either way, with the first shot of Humira, the joint pain started to go away.  Hopefully, never to be seen again.  That part was great.  The not so great deal was that all Crohn’s symptoms, the fevers, the stomachaches, the nausea, the whole stinky gamut came back.  I didn’t notice any instant relief of my Crohn’s with Humira.   I will note though, that many of my friends with Crohn’s have a lot of success with Humira.  That just proves what a weird bunch we all are, and how totally aggravating this disease can really be.

After I went on Humira, I visited with the GI doctor who wanted to immediately put me on steroids.  We spoke.   I reminded him of my problems with Predisone and Entocort.  Long story short,  I got put back on steroids (I know, right?) and surprise surprise!  I had nothing but grief for the next six weeks.  When I went back to the GI doctor, I was an unintentional 15 pounds lighter and feeling pretty awful.  GI was unimpressed with this past round of steroids so I, slowly this time, weaned off and now I’m steroid free… again.

I’m going to end there in the interest of getting the rest of this story out in a timely manner.  There are lots of exciting things coming for me to share, a death defying colonoscopy, a trip to the sweetest place on earth, and a very special episode of The Gimpy Colon Goes to  Philadelphia! Stay tuned!

Cheers! and be well fellow Chronies

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The Quiet…

The Gimpy Colon has been quiet. Shhhhhhh hear that? That’s the sound of a sleepy gimpy colon. I am truly grateful. And it’s been a busy fall so far. A lot of research has gone into the theory that most Crohn’s fails happen during periods of stress. But for some reason, I’ve been able to escape the nasty effects of my gimpy colon. I say that very quietly with every finger and toe crossed for good measure.

In fact, we are almost at a year since this whole debacle started. On October 3, 2010, I took our son to a birthday party which was taking place at the karate center just a few walkable minutes from our house. I came home, ate some leftover Dominoes pizza that my friend, Butter (we call her that because of her strange insistence that all baked items that pass her lips be made with butter and not margarine or any of those other fancy lards) and I had enjoyed the night before. I sat down on the couch to enjoy a non G rated movie for once and that’s when the pain hit.

The pain was on my lower right side and radiated around to my back. It reminded me of labor pains but were not intermittent… meaning it was a constant totally raw, totally outrageous pain. I tried switching positions, I tried walking around, I tried the bathroom… I finally gave up and went out to the carriage house to find the Farmboy. He immediately figured it was appendicitis and ran inside to get his wallet and keys.

On the ride to the hospital, I instructed the Farmboy to drop me off at the hospital and go and get the boy at the birthday party when the party was finished. Farmboy was clearly not liking those instructions, but was willing to listen to last requests… It’s funny, today we have a host of people in the neighborhood who could have taken care of the boy at this time, but just one year ago, there wasn’t a soul… consider this a public service announcement for the usefulness of school bus stops.

Anyway, we get to the hospital. Farmboy drops me off and speeds off to get the boy. I hobble into the ER and immediately ask the front desk person to kill me. She refuses to comply, and instead takes my information. At that minute, a man comes up behind me from my former church with a big ole’ “Hey how ya doin’?” I say that I’ve been better and hope that he goes away.

Now the pain I was having was the kind of pain where no speaking could happen… It hurt to speak, it hurt to hear people speak to me, it hurt to try and think of answers to questions… it hurt, it hurt, it hurt… so this man proceeds to ask me if it’s my son who is here for emergency care… I guess he didn’t notice me hunched over in outrageous pain. Then he asks me where I’ve been. I tell him I changed churches and I know I sound just like William Shatner… I. Changed. Churches. Then the guy asked me why I switched and that’s when God intervened and had the nurses call my name.

I get taken in a wheelchair to the triage area where they take my blood pressure and temperature and I guess figure out how serious my case is. Luckily (or unluckily… whichever…) my blood pressure is in the toilet. At that point, I’m basically waiting for permission to pass out. I get taken right to the back. Someone is there right away to assesses the situation. I get a nurse, the most beautiful nurse in the whole wide world, with a big giant needle… she fixes me… that nurse… with Toradol. Some fantastic pain stuff.

After that I get wheeled in for a CAT scan. The medical people are figuring that I have a kidney stone. I really don’t care at that point. They cured my pain. But, I go along with their silly tests…

And so, after a month of test taking which usually resulted in the doctor calling me THAT DAY with the results and having me take another test, we finally got my diagnosis… Crohn’s Disease…. Five months later…. Celiac Disease…. One month after that… Adrenal Insufficiency…

Memories….like the corner of my mind.

Anyway, here we are at today. I’m off Prednisone. I took a test to check my adrenal gland and find that it’s working pretty well. All my levels are good. I am currently weaning off Ultram which is kind of a funny story…. I got my prescription and actually forgot what Ultram did for me. It was for pain… well, I haven’t had much pain lately, so I thought.. I’ll just stop taking it… really bad idea. I spent two nights wandering around my house unable to sit… it was anxiety to the nth degree. So I started taking the Ultram again and went online to see what the deal was with getting off this stuff.

All the google entries talked about going to rehab, and taking other drugs to counter the Ultram and honestly, I could use a good rehab right now… one that has a spa. Anyway, I ended up calling my GI doctor. They are sending me my wean schedule tomorrow. Also good stuff.

Remicade is going well. I hope I get to stay on it. I know last year my GI doctor wanted me on Humira which is just a quick injection (I hear it’s painful though). I totally look forward to my turkey box, my chit chat with the nurses and watching Little House on the Prairie uninterrupted.

This November I get another colonoscopy. One of the joys of having Crohn’s disease is you get a colonoscopy every year. I can’t wait to see this year’s colon pictures compared to last year’s! And here another public service announcement from the Gimpy Colon… if you are over whatever age they want you to get screened for colon cancer, then for God’s sake man! Get a colonoscopy. The prep is good because you get cleaned out. They give you nice, fun, sleepy drugs, and they give you graham crackers when you come out of it. AND you get to find out what your colon looks like on the inside… it’s win win if you ask me.

Today’s Glutie Award goes to Molly’s on Main in Landisville, Pennsylvania. Sadly, we found out on Tuesday that Molly’s has closed its doors. Some gals that work there are trying to get it opened back up. Apparently the owners have decided to close it up (reasons for that are still unclear). The staff at Molly’s were great with my gluten-free bread. They aren’t “gluten-free” per se, but they are very accommodating and that’s all us Gimpy Colons can ever ask for.

Until next time… I shall try my darndest not to be such a stranger… of course, I don’t know if I can promise that. The boy has started travel soccer you see…

Be well!

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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!

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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!

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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!

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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!

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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!

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