5×7 Folded Card
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I ordered these today – but only for my generation and my aunts (and dad). If you click on the picture it will take you to the site, where you can see the inside and back of the invite.

I’m having a family reunion. Whoo! I wanted to share the invite here for posterity. Heh.

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Here we go again!

Today I received an infusion of what may or may not have been Stelara at what may or may not have been a therapeutic dose. Yes, it’s that time again: I have joined another clinical trial.

Why did I choose this trial? Well, Stelara is already an approved drug, although approved for psoriasis, which basically means it can’t be that dangerous, right? Also, because I did so well on Remicade for so long, it is hoped that I will respond well to this drug, which is similar. Don’t ask me specifics – I know that the Remicade worked with the tumor necrosis factor and I know that psoriasis works with the interleukins. When I read the gobbledegook (technical term) I mostly understand the theory behind the science; I can’t explain it, though.

The study is pretty simple – I got the infusion today and that is basically it. I will meet with the study nurse every 3 weeks or so for the next 12 and have blood drawn and keep a diary. If I want to continue on from there, the medication comes in the form of an injection once a month for the next 44 weeks. Additionally, I can remain in the program for up to 4 years, receiving the medication for free – which is a big deal if you know anything about the cost of these types of drugs.

I was reading the results of the Phase II trial (this is Phase III) yesterday, which says that 44% of the patients achieved clinical remission at 22 weeks. That’s a good number. Also a good reason to stay in until at least 22 weeks, right?

So. So far I feel nothing. Nauseated, but that’s just another day of the fun that is Crohn’s. Tired, but… see previous sentence. My mother being in a nursing home with a broken leg since the beginning of the month has also left me continually exhausted. I have been there every day except one. I am running back and forth between her house and the home, my doctors, the kid’s stuff, watching the babies, living in a house of chaos while Melody’s room is under construction, worrying about this and that and every other damned thing… I could go for a day or two of just nothing.

You know?

Posted in Clinical Trial, Crohns | 2 Comments

February wrap-up

After the January I had, you’d think February would be better, right? Ha. HA, I say. A pipe froze and flooded Melody’s room. Literally, flooded it with 6-8 inches of standing water. Of course she had plenty of stuff on the floor, too. This all happened on the 12th. As I write this, on March 6th, All of her belongings (of which there are MANY) fill my kitchen, dining room, family AND living rooms. She is sleeping on a mattress wedged into the little space available in Cailey’s room. This has led to a few major panic attacks on her end and a few minor ones on my end. For real. Dave and a few friends from work are taking on the job of fixing the room. Currently it has been stripped down the studs and insulation and is a wreck, much like my nerves.

I’ve had a migraine since February 23rd. Isn’t that nice? My neurologist first called me in a steroid pack – didn’t work – and then gave me 10 Naprosyn and got me an appointment at the end of April. Can you believe that shit? I called my DO today and am seeing her in the morning. I don’t know if she can do anything, but I’m about ready to cut a bitch if these things don’t stop. I’m sure they are stress related, or maybe barometer, with the nutso weather, but let me tell you: they suck. My Crohn’s? Up and down. NSAIDS don’t help.

I’m still watching my great-nieces and they are the bright spot of my days. Sometimes I think I’m too tired or whatever… and one smile from Lylah and I’m good to go. In the last two weeks she has learned to sit up, crawl, clap and pull herself to stand. Phew! It’s a major growth spurt for her and also means I have to watch and distract her more. And when Grace is awake it’s like herding cats. Luckily I’ve been able to keep them contained to the family room. Nicki just told me she wants to start potty training Grace, so we’ll see how I can handle that.

So far I haven’t really let the dogs out while the girls are here, mostly because Belle is SO exuberant. They handle being caged for a few hours OK. Belle completed puppy obedience – though I can’t really say she learned too much more than sit, down, and paw. I learned some things that I plan to use once the weather is nicer, though. Currently I don’t have to put her on a leash, so she of course hates the leash. Once it’s nice out I want to walk her and get her to heel. We’ll see. She is going for her spaying next week, and I am sad – not abut the operation, per se, but about her being in any pain. This vet seems so good, though…

And that about covers the gist of this fabulous life… still no change in Dave’s job situation. Melody is stressed about that as well. Everyone is just stressed around here, you know? There has been a lot of ice cream consumed.

I hope you’re faring better out there! Here’s hoping March doesn’t suck.

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January wrap-up

I don’t know where January went, but I’m glad it’s gone. Let’s see, in January I bent over to tie my boot and pop! pop! pop! broke 3 ribs. Just like that! It was a Thursday and, as usual, I doubted my instinct (who breaks a bone by bending over?) and didn’t call the doctor. Saturday I could barely move without howling – and I have a high tolerance for pain. I called Monday, had the xrays and confirmed what I’d thought. Snapped the bottom three ribs on the left. How stupid is that? I’ve been on and off prednisone forever, which sucks the good stuff out of your bones, but I do have regular bone density checks. The doc put me on Boniva (just like Sally Field!) to take while I’m on the steroid. I’ve been on it for about a year now, with no signs of being able to come off just yet.

It’s been about a month now, and they don’t hurt much anymore. I get a twinge here and there, mostly when I forget and have Lylah stand on me or something.

Speaking of Lylah:

01312014_1This baby heals my heart every day that she’s here. She’s mobile now, rolling and scooching… and so very, very happy. You cannot be sad or worried or anxious in her presence. That goes for her big sister, too:

01172014_8They are here 4 days a week now, for about 3 hours or so. Gracie is a little more work, just because she is nearing those terrible twos and pushing limits (oh, those stairs!). Sometimes I’m worn out, but it’s a good respite from worrying about everything else.

What’s the worry? Oh, Dave’s job, mostly. My health. His health. Mel’s issues. Money, money, money. The older I get, the more I worry about stuff. I wish I didn’t. I wish I could turn it off. It may be time to talk to a doctor about it, since I’ve had a couple of mini panic attacks at night. Nights are the worst – the head doesn’t want to shut up.

What else? I’m knitting, of course. I’m almost (knock wood) done with my first lace project:

IMG_5071I can’t wait to block it and see it done!

Belle is in puppy school and learning. She’s a sweet, sweet girl.

01172014_22She’s up to 23 pounds now. Loves Porky to death. He tolerates her.

01272014_1So. It’s February. I’ve had a vicious head cold for about 4 days now, but I think it’s finally on its way out. The weather peeps are calling fro 6-10 inches of fricking snow tonight. Between snow and record low temps, the kids have been out of school a lot. We’ll see what happens tomorrow!

Stay warm!

Posted in Crafty, Misc | 1 Comment

It’s not just about poop

We Crohn’s folks get upset at those stupid commercials where the person is looking worried and trying to find a bathroom. It’s not that that doesn’t happen — if you ever want to find a public bathroom, ask someone who has Crohn’s — it’s the idea that we have to poop a lot is all there is to know about us. It’s actually not as big a part to some. For me, I’d put it at about 65%. There’s just so much more to this damned thing.

Today, for instance, I am suffering with a bad case of mouth and throat ulcers. So bad, in fact, that I cannot even wear my dentures, which is a big thing — no one ever sees me without them unless I’m in bed. I may have to put them in later and run out (although it’s -11 out there and who knows if my van will even start) to get a prescription. Mouth ulcers: think about your biggest, nastiest canker sore. Yep. All over my mouth and throat. Under the tongue, on the inner cheeks and lips. It’s awful. Gross. Painful. Frustrating. I have a prescription for this viscous lidocaine which is this gel I’m supposed to swish around. It works (for about 15 minutes) but it’s disgusting. I’m waiting to see if my doc will call in another Rx I’ve used in the past, which is a liquid ulcer med.

When you have Crohn’s, you never know if your symptoms are from the disease, from the medicines, or something new entirely. I get mouth ulcers pretty regularly, but this is the worst it’s been. I’m also taking a chemo drug right now, though, so they could be a side effect of that. I just don’t know.

I do know that I have to try to get out to get blood taken today in prep for an appointment with the hematologist tomorrow. I need my iron. I can feel it, so I’ll be interested to see the numbers. Anemia sometimes goes along with Crohn’s, too. It can be from bleeding internally (ulcers in the intestines) or from just not being able to absorb iron the normal way due to what they call “short bowel syndrome,” which is when you’ve had a lot of bowel removed. There’s not enough left to absorb and process nutrients. This happens and, like me, you get to go in and have iron pumped into your veins every now and then. I think I’m at about 8 weeks between infusions right now, but I have a feeling he’ll move it closer together. I know my counts are down. This drug not only drop your white count but your red, too.

Crohn’s also tears up our connective tissue, meaning we get arthritis, skin problems, even eye problems. The fatigue is relentless. Then there’s the depression that inevitably comes with the fact that you are always dealing with something. Right now my guts feel pretty good, so I should be feeling great…along come the mouth sores.

I hope this doesn’t come off as whining or seeking sympathy. It’s just that we need you to know that Crohn’s is about more than running to the bathroom. It’s life-changing, but we – most of us – just keep going. That’s all you can do, right?

“Just keep swimming” – Dory the fish

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Goodbye, 2013

You sucked, for the most part. CJ’s wedding is the only good thing I can think of. Crohn’s made it a rough year for me. Work stress continued for Dave. And on and on.

So. 2014. Please be kinder to us.

I hope your holidays were nice and peaceful. We had a very low-key, smallish kind of holiday. For the first time in forever, we used no credit for Christmas, which meant the tree had the smallest amount of gifts ever. I mean, I don’t THINK anyone was really disappointed (except me, and I was only disappointed that I couldn’t give more…this is my own hang-up), but to me, the tree looked kinda sad.

12242013 Anyway. I’m going to write more in 2014, both here and in my paper journal. For now, here are some of my favorites from the last few weeks.

12242013_2Melody and CJ’s dog, Carmelita

12242013dogsBelle and Carmelita

12242013_3CJ, Megan & their dogs, Christmas Eve

12212013_1A blurry pic of the rest of us.

12252013_1Christmas morning. A rare smile caught on camera.

12252013_2My crazies

12202013Lylah & Grace: precious babies. I made her that silly fox hat.

12252013_3Cailey & Mom, Christmas Day

12082013_2Does anyone NOT have this magic loom thing?

I’ve been slacking in picture-taking, too. It’s so easy to take cell phone pics, and my moody child no longer likes having her picture taken. Let’s hope I get back into the habit soon.

I saw a segment on tv this morning that talked about coming up with a word instead of a resolution. You know, like “Forward” or “Forgive.” I found this intriguing, and after thinking about it, I thought my word for the year should be “Release.”

  • Release the old hurts
  • Release the guilt/anger/bullshit I’m holding on to
  • Release myself from as much worry as I can

Just… release.

What would your word be?


Posted in Misc | Tagged | 2 Comments

Babies, babies, babies…. and stuff

I’m here! It’s been about a month since I quit the clinical trial and started taking 6MP. Guess what? I feel better!

I’m still a slave to the bathroom, still getting up at night, etc, but I *feel* better. I can tell that the inflammation is down. I’m still tired too much, the hot flashes are even worse on this drug, but I don’t feel like lying down and doing nothing all day. It’s something!

And my mood is better. Feeling better has helped, but also? I started watching these sweet girls a few hours a week, and they have been better than any anti-depressant ever could.

10182013graceThis is Gracie, and she makes me laugh and laugh.

10182013lylah1This is sweet little Lylah, who is just starting to coo and smile and melt my heart at any given moment.

They are my great-nieces. Technically, they are my ex-husband’s, but I refuse to give up the right to call them my family. I used to watch their beautiful mama, and now I get to watch them. Life’s pretty cool like that.

10202013_3Lylah and her mama, Nichole.

I was invited to Lylah’s baptism today, which made me feel good. There is still awkwardness with some of the ex’s family, and I try to respect everyone’s feeling’s. Anyway, I was happy to attend, and the ex didn’t even go, so no worries.

And so that’s where I’ve been. I’m getting used to this new normal for now, and the plan is for me to join another study next month. I’m hoping it will be my magic. I need to get off the steroids because I am sick of looking/feeling like a giant, puffy, sweaty mess.

I’ve also been knitting/crafting. I started this blanket a while ago without a baby in mind. I just wanted to knit something blue for a change.

10202013_9And then an old co-worker contacted me about making her a blanket. I’m just starting to seam it up:

so prettyThat’s about it for me today. I’m pooped, as usual. How are you?

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