.. because I’m still here.

Standard

I planted my garden today with a little help from Stevie. Apparently, I’m still not strong enough to drive those metal poles (for my cucumbers and green beans) into the ground far enough to be stable. I planted two different kinds of tomatoes, some bell peppers, of course my green beans and cucumbers (cucumber salad here I come!), radishes, lettuce and carrots. I’m excited that it’s finally warming up enough to plant, although we had a frost advisory last night.

I didn’t plant any flowers yet, that’ll be next paycheck as I tend to go a little overboard with them. Definitely looking forward to picking them out. I know I’m going to get Margarite Daisies, Snapdragons, and some double impatiens if I can find them. I have so many pots to fill, and a flower bed (any shadow loving flower suggestions anyone?). My short kid is in charge of her flower bed, so I’m assuming she’ll pick out the brightest colors she can find.

Haven’t been feeling my best lately, my Crohns is acting up just in time for World IBD Day. It’s really doing a number on my outlook/mood though. I guess I’m just frustrated that it’s limiting what I can do again, and I’ve been missing a bit of work. That, and of course, I’m worried that I’m going to make those around me upset. I’m sure my co-workers are getting tired of me being always sick, and I don’t want to worry my family. My daughter doesn’t seem too phased by it though, and Stevie is really understanding, which helps a lot.

I’m glad I was able to work through getting sick while weeding the garden earlier. I’m really proud of the fact that I was able to continue working through the pain (with the exception of a bathroom break) and get everything done. It really bothers me when I am not able to do what I used to, but I’m slowly learning how to pace myself and how to work around limitations. Although I’m pretty sure that I got a little snappy when I was offered help, but whatev.

Now? Time for some grilled pork chops (that I’m not grilling.. yay!), artichokes and baked beans. Then I shall be curling up to finish my book. Good weekend.

Advertisements

Come on Spring!

Standard

Every little taste of warm weather gets me even more excited for Spring. I have so many things I’m looking forward to that it’s beyond ridiculous at this point. After everything that’s gone on in this past few months, it feels like I have a fresh start.. at pretty much everything. So I guess that’s what Spring is to me this year, a figurative new leaf, a fresh start, everything.

So this year I’m going to be doing the garden all on my own, and quite frankly I’m thrilled. In the next week or two I’m going to go buy myself an asparagus plant, hopefully I two year one if I can find it. I’ve been meaning to plant asparagus for years, but I’m too impatient to wait for it, or I talk myself out of it at the last second. When I put that plant in the ground, I’ll probably go ahead and put in my first round of radishes and lettuce. I’m not sure what else will go in the garden this year, definitely green beans and tomatoes, maybe some peppers and carrots, but beyond that I’m still debating. When my ex was still maintaining the garden, we kept planting things we really didn’t eat a whole lot (eggplant, broccoli) and I really don’t want to waste the space this year. I don’t know, I’ll figure it out soon I hope. Haha.

Moving on. So the ex came and picked up his dog the other day. A small part of me misses that stinky old hound, but the stress in my house has decreased significantly. Dealing with two dogs, one of which was a stubborn nose-driven-beagle was just too much for me with everything else that’s going on. One more dog is much more manageable for me. It has it’s perks too. I let Thumbs stay out of the crate at night now, and she’s much happier and I’m sleeping much better now too. I had always crated her with Zoe because I’d feel bad putting one dog in the crate and leaving the other out. Zoe though couldn’t be out at night or anytime we weren’t in the room since she’d have accidents in the house and rummage through the garbage can every chance she’d get. Beyond that, it’s much more convenient now to go take a walk with Thumbs. With both dogs, they’d both go every which way, and pairing that with my motor mouth child, walks were far from relaxing. Now, my dog just does her business, and Noodle and I talk while walking. We’ve made it a goal to walk at least 4 times a week. So far I’m loving it. The mild exercise paired with the lower stress in the house is really helping me keep my head in a good place.

My birthday is coming up as well. This year is the big 30, which to me feels like 40 but who’s counting. I’m not as effected by the number as I thought I would be. I mean, I’ve already hit most of the milestones my age group is going through right now, years ago. So I guess it’s not a big ole thing. Not sure about a mid-life crisis yet either, I’m pretty sure I’m mentally 80 years old as soon as I get off of work. I’m content with a book, my journal and some coffee or tea. The rowdy night out is a rarity, and has been for a while. That’s fine with me. I always thought I’d be upset about turning 30 though, and honestly, I keep forgetting about it. We’ll see. I know Noodle is more excited than I am, but beyond that I’m not sure if I’m even doing anything for my birthday. Who knows!

Work is going well, same shit, different day, and I’m still there so that’s a bonus. I’m working on writing more, but haven’t been able to really drill anything solid out. I’m still on the hunt for a group of some sort to join, but I’m not really finding anything I like yet. I did find one group the next town over that’s something along the lines of books and brews at a local pub that sounds fun, but I haven’t had a chance to check them out.

My health stuff is basically stable, my Crohns pops up here and there, and my heart hasn’t given me the finger lately. Feeling quite a bit better with my anxiety and such as well, but all of that is a work in progress I guess. Just glad to finally be feeling more normal and.. gasp.. dare I say.. happy? I guess not being told how much of a horrible person I am damn near every day helps. Whodathunk?

The kiddo is doing great! She just brought home another report card earlier this week. She’s still getting straight A’s! I’m really proud of her, and that’s honestly an understatement. She’s doing so well in school, and has really stepped it up with helping out around the house. She’s about excited for spring as I am. I think I’m going to get her a new set of roller skates as a gift for her report card, and to give her something to do outside. The kid not only beats me out in smarts, but she’s still hella more agile than I ever was. I swear, she keeps me on my toes.

That’s about it I guess. Planning a big vacation with the family later this spring, but beyond that, it’s been pretty laid back and relaxing. It’s been interesting finding peace again, and honestly, I can’t help but to say that I’m content with the turn my life has taken this past year. I’ve learned a lot, faced a lot (especially the heart issues) and came out better for it. I guess.. cheers to spring! Let’s see where life takes me now!

Moving on up!

Standard

After the craziness of the last few months, life is starting to take on a bit more normalcy. It’s been one hell of a ride, that’s for sure! For once though, I feel like I am coming out a better, happier more knowledgeable person.  

So my heart (be still my beating heart haha) is doing better. I haven’t had any more major issues beyond a couple shot lived episode a few weeks ago. I also prepared myself and learned how to cope if they do happen, and I have a prescription if things get worse again. So far no worries. Back to basic life for me. (Hopefully my EP was right and it was a short lived thing!)

I however did get quite a bit of anxiety from the whole ordeal. I think having your heart stopped and restarted in the ER will do that for anyone. So I took a first step and found myself a really sweet therapist. It’s nice to be able to really tell someone everything… something I haven’t been able to do in about 5 years. She’s helping me learn how to cope with my illnesses as well as being a single mom (again). I’m glad I took that step, as it seems to be really helping me straighten myself and my life out. She’s given me great advice from how to deal with doctors, (she even found me one when I didn’t like the new one I had) to how to take steps to stop being a doormat for people, to great budgeting ideas and resources for writing and art.

Beyond that, I’ve also been making it a point to write and read daily again. Just to get the creativity flowing. I started feeling more confident with myself just doing that.

Oh! Even managed to go a few miles at the forest preserve already. It was so nice out, and felt good to get active again. Noodle and I are just starting to work on the yard for spring (I’ve got a feeling it won’t be as easy as taking it all down for winter). We’re both excited for the garden this year, as well as planting our flowers! She’s really involved with it too!

Nood has been doing great! Grades are steady in school with good behavior. She really has stepped it up with helping at home with chores. I’m proud of my little munchkin.

I’ve also been able to start reconnecting with friends I haven’t seen in forever! I forgot what having a social life is like! What I’m working on now is finding a club I want to join. I’ve been looking for quite sometime, just can’t decide.

All in all, things are going well. I hope the trend continues! It feels so great to finally feel happy again after all those years filled with doubt and anxiety! Looking forward to Spring!

Have a nice night everyone!

image

Home Home Sweet Home

Standard

I am home. My heart rate and pain stabilized this morning and all the doctors agreed I could do the rest of my healing at home.

I am so happy to just be with my family and to snuggle in my own bed it’s amazing. I don’t think I’ve ever given the short kid and boyfriend so many hugs in such rapid succession. I missed the short kid most of all, and she missed me too despite getting the hell spoiled out of her by her favorite daycare teacher and grandpa.

I’m so glad I’m home. I’ve got a handful of appointments to schedule and have to work out something with her daycare for while I’m off (that way she won’t lose her spot in summer camp) but it’ll all work out.

Happy healing!

When I feel better…

Standard

Anyone with a chronic illness can vouch for me here. Sometimes, more often than not, you’ll make plans or put something off until you feel “better”.

There’s always the argument that you can’t just waste your life waiting, which is promptly followed by put your health first! I end up doing a little bit of both and it’s just left me frustrated.

I can’t tell you how many things I’ve missed out on because I didn’t feel well and wanted to put myself first. I also can’t count how many times I’ve made myself even sicker by doing something so I didn’t let life pass me by. No matter what you choose, part of you always gets the short end of the stick.

image

Well, hopefully things start to change here soon. I’m back in the hospital with another obstruction. I feel bad because this time Ashley got upset at school about it, however she’s now in sleepover heaven and “never wants to leave” haha, but still. I miss my monkey, I wish I was at home, but this time things might go a little differently.

So yeah, obstruction. Part 3 in 2015. Totally lame, it’s mostly caused by scar tissue at this point. After last month I went home and stuck to a low fiber or soft diet to make things easier on my insides. Both doctors (surgeon and gi) wanted to give Entyvio a chance to work before the big slice and dice.

So the second week out, I had what I think was a partial obstruction just from moving from soups to other foods. It passed though, although I figured out over the last weekend that I was on borrowed time. My stomach stayed acting up after eating fried eggs out of all things. By Tuesday, I knew I was pretty much screwed when lunch kicked my ass.

I had an MRI yesterday, while the good news is is that my fistula closed, the bad news is is that the scar tissue is so bad, nothing bigger than an eraser head on a pencil can get through.. on a good day. So I give.. surgery it is.

I’m tired of Crohns running my life. I was okay with having a couple of bad days a month but not being able to eat anything? To end up in the hospital more times in one 4 months than I do in a year? It’s impacting everything, my daughter (sadly, she’s almost used to it, which is almost worse, but she’s very helpful and sweet.), my relationship with Ry, my work, and quality of life. Enough is enough, slice and dice it is.. and bonus, I won’t lose time out of summer. I always hate being in the hospital when it’s warm out.

It’s really easy to get down on yourself when you’re sick. It can really make you feel like a burden on those around you, I know I really rely on a lot of people when I’m stuck in here. Jess really helps out with Noodle, which I’m eternally grateful for, Nood absolutely adores her. Given a chance I think she could spend forever there haha. I rely on my online friends to talk me out of the inevitable funk I fall into in the hospital. I rely on Ryan for pretty much everything else. Then of course my co-workers suffer. I feel like people will start to resent me but I’m thankful for the support net I have, however small. I don’t know what I’d do with out everyone.

Hopefully this surgery will really improve life, both my gi and surgeon think so. It should be just a basic bowel resection, and I’m meeting with my surgeon tomorrow to nail down whether it’s going to be next week or the week after. I’m going on steroids for a couple of days for sure, but we need to meet and talk about the pros and cons to waiting for steroids to work a bit or just jumping into it.

I’m just looking forward to getting some kind of normalcy back in my life. Wish me luck.

Is it Summer yet?

Standard

I am home from the hospital, and currently relaxing on the couch with my two mutts, little one all tucked in for the night. I missed her quite a bit, even though I was only technically in the hospital for 3 days… she on the other hand, thoroughly enjoyed her vacation from Mommy.  Usually if I have to go into the hospital she either goes with my Dad (where she is spoiled rotten) or she goes to one of her old teacher’s houses (a friend of mine who works at her daycare… who also spoils her rotten I’m convinced). When I got home I warned my friend, we’re chopped liver when she’s around, and to have fun prying her out of your house. Sure enough, she was a bit upset that her fun was over, but I got a super big hug and a kiss when she walked in the door.

Oddly enough, this little hospitalization timed itself perfectly as the munchkin’s got a bit of a head-cold and wouldn’t have been able to go to daycare anyway (spring break up here in the mid-west. So we got to spend the day lounging together and relaxing, with both of us asking each other how we’re feeling and if we the other needed anything.  Honestly, it was quite cute.  I don’t know what I’d do without my little minion, she’s one of a handful of things that keeps me moving, even when I don’t feel well or am down in the dumps.  Between her, the boyfriend, and all the pets, I get cuddles whenever I want and love, more than I can handle.

Sometimes though, it’s hard not to get down in the dumps. Especially in the winter, well, I guess now “Spring”. Lately in the mid-west, Spring has been colder than usual, so if you’re someone like me who gets the so-called “Winter Blues”, this time of year is wretched. Where we’ll get one warm day and then snow.  For instance, we already broke 70 degrees, and then it snowed about a week later. I’m definitely counting down until it starts to warm up. Hopefully my mood will improve on it’s own then.

Definitely looking forward to late Spring and Summer this year. We have a lot planned, from trips to the lake house, to farmer’s markets and such. The last few years were really busy, last summer especially with my working insane amounts of hours, both in the office and out. I feel like I missed out on a year, so I’m making sure that doesn’t happen again. The Short One has already been able to go roller skating outside and to ride her bike (she’s still doing great on it, although she still takes the occasional spill – the boyfriend taught her last summer) so pretty much anytime it’s warm enough to unzip your jacket just a tiiiiny bit, she’s asking to go outside. We can’t wait.

I know I’m probably looking at some health issues this summer, but hopefully we’ll be able to plan them out (surgery?) since Grandpa wants to take her if I do go in so they can do something fun together. To be completely honest though? I’m just looking forward to the kids all playing in the backyard and relaxing on the deck. Come on Summer! Get here already!

Welcome to Puke-Fest 2015

Standard

Yes yes, as the previous post stated, my butt is back in the hospital for yet another obstruction with my Crohns Disease.  2nd one this year and it’s only March, so obviously something isn’t right with my body right now.  I actually saw this one coming, so I had a bit of time to prepare and plan, unlike the one in January. That one I had absolutely no clue what was going on, I actually thought I had food poisoning, when usually I can tell you exactly where the catscan will find inflammation.  Oh well.

Anyway, Monday night, I felt pretty bloated and had some major cramping.  I knew right away to lay off the food and wait for the nausea.  I’m not one to get nauseous easily (unless I just got an Entyvio infusion apparently), so nausea is usually my “Get-Your-Ass-To-The-Hospital” sign for obstructions.  Tuesday morning I was super nauseated and looked like I was 6 months pregnant instead of my normal 4, shut up, I like cupcakes.  I forced myself to take a shower, as I know I wouldn’t be able to take one for a bit and it was blantantly obvious I was headed to the ER.  I took the monkey to school, called my doctor and went into work to help out while I waited for a call back.  My work is the halfway point to my hospital of choice, plus I felt bad that I was leaving them with a mess to clean up.

After a while of no calls from my doctor, I decided fuck it.  I felt like hell, I had given them the heads up they always ask for, I was going to just head in.  I was nauseated still, but didn’t feel too out of sorts that I couldn’t drive so off I went.  I literally made it 5 minutes away and BAM!  Puking.  I pulled off onto a side street and spewed everywhere.  After a few minutes of people driving by and gawking I realized the puking wasn’t going to let up and I had to call 911.  (Also, don’t pull over to puke in million-dollar-house-neighborhoods – they get offended…) I had a hard time telling dispatch where I was and out of the 6 or 7 cars I waived down, only one stopped to help.  Once I had the address to them, the lady stayed and waited with me until the ambulance got there.  After almost puking on a firefighter, I was packed away with 3 of the nicest EMTs I have ever encountered and off to the ER.

On the way there they couldn’t start an IV, so Zofran (an anti-nausea drug) wasn’t an option, so I did my best, and one of them talked me through the heaves.  To be completely honest though, I started to get scared.  My blood pressure severely dropped (which considering my normal is 90+/50..) and I couldn’t hold myself up or stop shaking.  Once my vision blurred, I about lost it and told everyone I was scared.  Once I got to the ER, the nurses failed at an IV and I had to wait for the IV team to show up (they blew 3 more non-existent veins) and the nurses stayed by my side because I was still scared.

Let me tell you something, in the 8 years I’ve been sick, 7 years diagnosed, I have never been that scared.  I’ve had pretty much everything go wrong with me, but having my blood pressure drop like that and losing control of my body did it.  I know my way around obstructions, and this one was not normal.  The EMTs even stayed until I was stable (which oh my god, how nice, I’m so buying them sandwiches and dropping them at the station next week).

I guess from what I understand one portion of my intestine in front of the blockage was so dilated that basically my body started to panic.  I know that’s not the medical term for it, but I was pretty much high-as-a-kite when they tried to explain it to me.  All I know is that I was scared, and I do not like being scared.

So all in all, beyond the thing on the way here, it’s been a pretty run of the mill obstruction.  I guess the stricture that keeps causing them is getting really really bad, to where at this point, modifying my diet isn’t really helping much, and it’s not really a question of if I need surgery, but when (hey naysayers, I’m glad I held out this long… the fistula is healed as of now, so no bladder surgery for me you asshats).

After talking with both of my remaining GIs (one of whom I love), and my surgeon, it’s basically been agreed upon that I’m going to see if I can make it through another few infusions (Entyvio takes approximately 10 weeks to work ~ 50% rate of remission) to give the drug a chance to actually get what little inflammation I have left to get the hell out.  Then we’ll schedule the resection.  The surgeon and I also agreed if I get too uncomfortable at home, or end up back here, that surgery will happen (I about demanded it during puke fest) and I let him know I will not leave until the stricture has been snipped out.

Now I’m not one for surgery, especially for things that have the option of healing on their own (ie: the fistula – which again naysayers, even the surgeons agreed with me on that one).  However, this stricture (narrowing of the bowel – ie: scar tissue) is getting so bad, the hole so small that almost nothing can get through.  Which limits my diet severely (mainly to overly processed crap that I HATE eating, and I’m not allowed anything from my garden, which makes me want to cry to just think of it) and severely impacts my quality of life.  I’m basically getting tired of not only being sick all the time, but now losing things that I enjoy (like my garden).  So it’s time I suppose, now it’s just up to my body to see if we can put it off and pre-plan it for during the summer when Ashley doesn’t have school, or if it’ll be immediate with another ER trip.  I don’t know.

All I know, is that I’m tired of this, and I want to get better.  If I’m going to suffer through the side effects of Entyvio (which STILL SUCK btw), I want the rest of my non-infusion time, to be enjoyable… not stuck in a hospital bed.

Le Sigh.  As for now?  I just ate my first solid meal, if I can not puke, and there’s no more pain, I can go heal at home, so I’m crossing my fingers.  I miss my kiddo (although apparently I’m chopped liver since she’s had sleepovers at her favorite teachers house) and my pets.  I want my own bed, my cuddles from my family and a full nights sleep without being woken up for vitals.