I’m writing this down as I just feel the need to get this out, to verbalise how I’m feeling right now.
I’ve been posting a bit about Crohn’s lately. I’m finding myself going through a range of emotions of late. I don’t know if it’s because I’ve been sick this time for over a year now, or if it’s finally hit me (after almost 18 years since my diagnosis) that I have an incurable disease.
I’ve been very lucky really. Other than a couple of rough years in the beginning I’ve been pretty much in remission with it for the past 12 years and I think I took that totally for granted. But right now I’m really feeling it. I’m nearly 41, have two young children and a sometimes debilitating disease that can keep me bedridden for days on end. I really don’t have time for this.
I feel cheated. I feel like I’m missing out on so much both with the kids and what I want to do with my career and art because I just don’t have the energy. I’m tired to my bones and it takes nothing to wear me out again. I have so many ideas and not an ounce of energy to tackle it. I’ve had to quit all my long dreamed of design teams because I’ve just lost my will to do it anymore.
Crohn’s is a nasty disease when your body decides it no longer needs your bowel and does its damndest to get rid of it. I get a lot of pain, cramping, diarrhea and nausea and because I can’t keep any nutrients in I’m so, so exhausted. My skin is dry, my nails are weak and my hair is lank and lifeless… I’m quite the catch. Even my scalp gets too sore to comb my hair properly, that’s one of the medication side effects. Fortunately I have a very supportive family and a lovely guy who looks after me and understands how hard it is when my Crohn’s is active.
I’m just finding it so hard this time around though. This time last year I was in Brisbane for the Papercrafts Festival. I spent half the time I was there writhing around with crippling cramps and dashing off to the loo. Too much info? sorry, but that’s my reality. My reality at the moment is not being able to go swimming with the boys as I can’t handle the water pressure on my stomach. It’s going to the supermarket but having to dash off at least once and battling constant nausea. It’s making sure I always know where the bathroom is wherever I go and not going too far from home in the car.
I’m scared to eat. Even water is setting it off at the moment. I’m just so over it.
I don’t want sympathy. I know there’s no cure (other than cutting out your intestines and living with an iliostomy bag which is near up there as my worst fear with this disease) and I know in the scheme of things I’m still lucky. I’ll start more Infliximab treatments at the hospital soon and will sit there with kidney dialysis and chemotherapy patients and come away feeling so, so blessed about what I do have. I know others have it worse, but it’s still hard. Every day I deal with an invisible disease. Every day I feel like I have to make excuses and explain myself as to why I have no energy. Why I can’t stand up for more than 10 mins (it brings on the cramping). I feel like a slug. I feel fat, ugly and drained… literally.
I’ve spent the past year on and off major steroids and my usual immunity suppressants. I take the same medication that transplant patients take to stop their bodies rejecting new organs. It damages my bones and teeth by taking the calcium out of them. I’ve had more dental visits in the past year than I’ve had in the past 10 and my teeth are deteriorating quickly. I don’t want to be a gummy bear but there’s nothing more I can do. I’ve also had umpteen doses of flu and gastro viruses, my immunity must be pretty low about now because I’m catching everything and it’s taking a lot longer to get over them.
I still have my sense of humour though, I know when that goes I’m REALLY bad… lol… and I can’t WAIT for the retreat in a couple of weeks’ time. I have a fabbo support group helping me make it awesome and I’m so grateful for all their help.
So there it is. Vented out so I don’t need to talk about it anymore. Onwards and upwards and back to remission really soon I hope, and in the meantime I’m just going to paint because it makes my heart happy.
Ummm what happened to July? June as well? this last couple of months has been a complete blur. I’ve been out of remission with my Crohn’s officially a full year now and I’m just exhausted, hence the lack of creating. I just can’t do it. I’m struggling to do the basics in the day and just have nothing left in the tank to do much of anything else. I had a colonoscopy the other day that showed a fair bit of inflammation, it was spread all over though so there’ll be no surgery at this stage (yay) and I have an MRI booked in a couple of weeks’ time to see exactly how inflamed it all is. After that will be a series of infliximab treatments to try and get it under control again and I’ve just upped my med’s and am having B12 injections as my white blood cell count is very low. Hopefully by Christmas I’ll be feeling more like myself again and less like the slug I’ve become. HOWEVER…
I’ve still be managing to prep for the retreat coming up in September. I CAN’T WAIT… so excited to have an Aussie contingent heading our way this year and have already started the planning for next years too! PLUS I have something HUGELY exciting coming up that will be announced really soon… so I’m not completely disabled… lol. I’m also very grateful to have huge support from a team of people who’ve all put their hands up to help me with the retreat, it’s gonna be awesome
Dead dog walking has settled in pretty well but he’s really not clicking with the whole “don’t-pee-in-the-house-and-don’t-nip-at-the-kids-and-don’t-eat-their-teddies” thing. In fact he’s driving me banana’s… it’s a good job he’s cute and loving. Oh and he’s gonna be a BIG dog. He can already stand on his back legs with his front legs on the kitchen bench (makes it easy for him to steal food and he’s food obsessed!). We need to get him trained before he gets much bigger or he’ll be ON the bench… aaaargghhhh…
For the first time since I started scrapping I’m officially without a design team too… it feels strange but it also feels good to know that I’m not letting anyone down by doing crap work and missing deadlines. My mojo has disappeared with my energy so I needed to just not have anything to do that people were relying on me for. I have a tonne of ideas that keep creeping in though so I’m hoping when the B12 injections kick in I’ll get myself off the couch long enough to make something.
Thanks for all your well wishes and support when we lost Kobi too. I miss my Boo tremendously and am still spontaneously bursting into tears if I think about him too much, not sure when/if that will ever stop but I hope it does one day.
It’s been a really rough week but there has been a little bit of light at the end of it. We’d decided to wait until after winter to get a new dog. Logically it made sense not to try and house train a pup outside over winter. We wanted to give ourselves time to grieve for Kobi. We wanted to take the time to think about what breed we wanted. We wanted to stop hurting.
Friday was the first day the kids were gone to school/kindy and my first full day without him. This house was so quiet and empty, the silence was deafening. All the little routines we had were still there, only we no longer had Kobi to do them for. It hit home big time that he wasn’t coming back.
I went to pick up the boys and the empty front passenger seat suddenly FELT empty. Kobi had been there only a couple of days before as I drove him to the vets that last time. I put my hand on the seat and burst into sobs yet again.
Meanwhile DH had come home and felt the same emptiness. No daft dog excited to see us at the end of the day. No noise. No nothing. This house had never felt so silent and so very wrong. Suddenly it was just a place we lived, our home had been taken from us along with our dog. So the decision was made, we both felt we needed to get a new little guy to love and sooner rather than later.
I’d looked online the day before when Josh had said he’d wanted another dog straight away as he was missing Kobi so much and I’d seen a litter of puppies, one in particular had appealed. Steve happened to have looked online and emailled me a listing – it was the same pup.
So welcome Baxter. He had us at hello.
He’s meant to be 11 weeks old but we suspect he’s actually only about 8 weeks. He’s a rescue from the pound and was on his last day when the South Auckland Colony and Cat Rescue came and saved him and his 2 sisters. He was full of fleas, worms and quite near death so he’s had a bit of a rough start.His mother was a black lab so it’s anyone’s guess as to what the other mix is, we think he’s about 75% lab though so think the father was a golden lab crossed with something else, possibly a red nosed pitbull due to his colouring but he doesn’t have any other features so really have no idea.
Josh has become very taken with him and he’s officially ‘his’ dog (but still a family dog). His reaction to losing Kobi took me totally by surprise, although he likes animals he’d never really shown any interest in him so when he was still crying 3 days later it really wasn’t expected. I guess we forgot that Kobi had always just been there, his whole life, for him too.
He’s a good little guy… he leaves a trail of puddles and destruction (as puppies do) but you gotta forgive a face like that. He’s settling in well too, slept through the night in his box (which he already is very attached to) and is very loving, sweet and eager to please. He follows us around and nips at our legs (as puppies do) and you have to watch him like a hawk to see what he’s up to. I’ve had a sponge permanently attached since we brought him home.
We know he’ll never be another Kobi and don’t expect that of him. Kobi was special and always will be but we’re glad Baxter looks enough like him to remind us of him, but is different enough that we’re not comparing too.
We haven’t a clue as to what he’ll become. He’s still so young and small and needs a lot of training, stuff we’re more than willing to do for this beautiful, sweet natured little fella. He could turn into a great dane, it’s very much the luck of the draw when you choose to love an animal whose history you don’t know much about. We have no idea.
All we know is he’s lovely. He’s ours and he’s home.
I’m still shaking from events of the past few days, I just can’t get warm. My eyes are puffy and red and I keep bursting into tears over the slightest of things, the smallest jolts of memory. Yesterday, after 12 years as part of our family, we had to make the god awful decision to let our dog Kobi go. Just last week me and DH were discussing that he was getting older and that we may only have a few years left with him, I didn’t want to think about it. Less than a week later and he’s just gone.
I’m grateful his illness was very fast – he had so many tumour’s on his liver that it shut down completely and basically poisoned him in 2 days. Up until this we had no clue there was anything wrong, he was the same under-your-feet boy that he’d always been, silly and gorgeous and always, always there. We’ve had no time to adjust to the idea we were going to lose him, and I’m grateful that his body made the decision for us so we didn’t have to, there really was no option to consider.
I took him to the vets on Tuesday as he’d not been eating and couldn’t keep down water and I’d noticed the whites of his eyes looked yellow. In my heart I knew it was major but I still hoped it was just a blockage that could be fixed by surgery. I dropped him off at the vets yesterday morning after spending two very restless nights up with him, cuddling him, telling him I loved him. In my heart I knew I was saying goodbye. I’m so glad I didn’t leave him overnight at the vets, he spent his last days at home warm, on his cushion, with the family that loved him so very much.
So this is my furbaby Kobi… my beautiful boy now gone to heaven. More human than dog, more child than pet. Our hearts and home are so very empty without you my sweet, sweet boo. I’ll love you forever, until we meet again. xx