Going Away

Well, at least part of me gets to go away. Not really on vacation though!

I went to my Rheumatologist today for my follow-up (I go every three months now), and he wants to put me on an immune-suppressant drug. However, in order to go on the drug, I have to have a blood test. This is no ordinary-run-of-the-mill test. No siree bob. I had no idea that stuff like this went on. (A little deeper thought and it all makes sense, but carrying on . . . ) They have to test my blood for a specific enzyme before I go on the drug protocol. It turns out that if you are lacking said enzyme, you don't process the drug properly, which leads to bone marrow toxicity. YUM.

So. Said test. Ya, only performed by one doctor in the lower mainland, at one hospital, (where I was today), and only on a Monday, Tuesday or Wednesday. What day is it today? That's right, it's Thursday. Good counting jack. That means I have to wait for next week. Why only M - W, you ask? Well that would be because my blood, once drawn, gets to fly to the Mayo Clinic for the actual blood test. If they draw it on a thursday or friday, by the time it's flown there and waits over the weekend, apparently the blood is bad, and they can't use it. So. Have to book another babysitter, because I am not taking two little kids that far to a hospital just to watch me have blood taken. NOPE. Not happening. Oh, and I was told to call a day in advance, because there is a special "kit" they have to have ready for me. Wonder what that means? How special can this blood test be? What is so different about it that they need a "kit"? WEIRD. But then again, that word just describes my whole medical history right there!

GOING.COMPLETELY.INSANE

That is how I feel. And I probably am. DH is working insane hours. Which leaves me as a single parent. I can handle it on short term basis, like one or two nights in a week. But so far he's worked 8 days straight, and 5 of those have been 15 hour days. The week before that, he'd worked three 15 hour days. This week it'll be M-F and then he's working Sat and Sun. In fact, not counting today, he's working the next 18 days straight. So that's 26 in a row!

Needless to say, I'm exhausted, my IBS has ramped up, the healthy eating is maybe half of the time, and I am getting little to no exercise, because by the time he's home at 9:30, I'm going to bed, not the gym, and our gym doesn't open before 7 am, and he leaves at 5:30. Not that I would get up that early to walk on a treadmill, or anything, just saying.

The fatigue is back about 90%. The canker sores are back, I have about 10. Not completely sure because the one on my lips in the corner of my mouth makes it hard to open all the way. No I'm not kidding, they've apparently migrated out of my mouth onto my lips.

Oh, and Diva Daughter has decided it would be fun to slowly drive mommy completely crazy. Besides having a screaming fit if I walk more than 5 feet away from her, she has taken to throwing things and fits if she doesn't get her way. I am in completely uncharted waters here. DS never acted like she is. Last sunday, while getting ready to go to my parents, she threw her yogurt clear across the kitchen because she was mad that I'd put her in her highchair. She wanted to sit in one of our kitchen chairs. She got put in her crib instead. When I called Dad to tell him she was the reason we'd be late, and let him hear her, he asked what I'd done. DH thought she sounded like a cat. She was just screaming so loud.

On wednesday, she decided she didn't want the juice I'd given her at lunch, and while I went up to the bathroom, she dumped it all over her tray of her highchair, and was splashing in it when I got back down. V8 Splash all over my kitchen. Again, to her crib. Again with the screaming at me.

Then, the other day, she wanted the cup DS had of milk. She decided she didn't want the princess one she had anymore. When he wouldn't give her his cup of milk, she threw hers at him. The lid popped off, and 8 oz of milk flew over two couches, the rug, and a pile of folded CLEAN laundry. Again, to her crib, and again with the screaming. And this time with me sobbing while I sopped up whole milk from every surface of my living room.

Luckily, she actually will stay with other people, but not many are offering! LOL. She stayed with a friend for a couple of hours today while I took DS to a field trip, and didn't put up a fuss about me leaving at all. Her problem just seems to be at home, and nothing I do seems to help. I can't even go to the bathroom without her whining that I'm not in the room.


YES, I am whining. This is my blog, and I'll whine if I want to. It's better to get it out here and whine than to let it build up so I can't handle the kids. I'm almost there anyway. LOL. I offered them to their grandmother, free of charge. For some reason she said no, she'd prefer to visit. I have absolutely NO idea why????? LOL!

My new favourite

drug . . . exercise!!! Seriously, 40 hard minutes on the treadmill later last night, and I was way happier. I trekked up to our fitness centre, and pounded out my frustrations on that treadmill, and felt like a different person walking home! The fronts of my ankles hurt from that and wednesday's hike on the hilly trails around DS's preschool, but man do I feel better. It's amazing, I've been working out consistently for a week and a half now, since the 28th, and I feel squirrelly if I don't get to go. I've lost 3 1/5 lbs of the ten that I put on in the month plus that I've been on the prednisone, but more than that, I feel better about myself.

I am having a hard time taking things slowly, which I know I need to do, so that I don't injure my joints or make the arthritis flare. But knowing that I was coming off the prednisone, (and that I'd gained 10lbs from it and nothing fit) really urged me to start this. Last time I came off I got sick immediately, and the pain and fatigue were overwhelming. This time I'm trying to arm myself. I know it sounds stupid, but I feel like I'm fighting a war or something, and I'm trying to bolster the reserves. I'm scared of coming off the prednisone. I don't want the pain, the canker sores, the overwhelming fatigue. I can't function like that. So I'm trying to combat those things with a really healthy diet and exercise.

I'm starting to do a lot of reading about autoimmune diseases, and will probably begin boring family and friends with details and such, but it is so fascinating. So far what I have read makes sense to me. One of the most compelling and interesting things that I have read so far is that most people with autoimmune diseases are treated by doctors with drugs to treat the symptoms, but that the root causes aren't looked at. One set of authors/doctors are convinced that anyone who has an autoimmune disease has been exposed to too many toxins (through our water, our houses, pollution, pre-packaged and pesticide riddled foods) on many levels, and their bodies are reacting to that. And so to start at rebuilding the body, and treating it in a way that we are meant to, with clean foods and exercise, is to help the body repair itself. This is a really condensed, and simplified version of what they are saying, but I'm willing to try it. The occurrence of autoimmune issues is huge - way more complex and in number than when our parents were our age. Coincidence? Breakthroughs in science? I don't think that's just it. I think it has a lot to do with what we eat, how we live, and the "progress" in the world. Simpler times were just that. They weren't exposed to all of the chemicals that are in many of the foods we eat these days. They weren't exposed to so many pollutants in the air.

I for one am going to try to live way healthier. If not for me, for my kids in the future. They don't need that crap in their bodies this young. I never had it till I was older, and look how sick I get! And while prepackaged foods may be way more convenient, they may be the cause of a lot of things. Don't get me wrong, while my intention is to have them slowly disappear from my house, I will probably rely on them when I'm not well - probably the worst time to, but one step at a time!

I guess I woke up and smelt the coffee last weekend. I realized that I am the only on invested in my future and my health. I am the only one who can make me feel better. I am the only one who REALLY cares how I feel. And I am the only one who decides what I need to do about it. I'm sick and tired (literally and figuratively) of waiting for doctors to tell me what's wrong, for the official diagnosis, and for them to figure out how to make me feel better. It's time to take my health into my own hands, and see if I can make a change. Realizing I'd gained 10lbs in a month and that nothing fit was a pretty big motivator too. A vain one, but a motivator none the less. Now when I crave junk, and am shopping my mantra is "I am not paying to gain weight, and pollute my body." It has stopped me from buying a few chocolate bars and bags of chips. The other one is "It's not a treat if it's going to make you gain weight and feel gross." You're welcome to use them too if you want!!!


Here's to a healthier me! (I HOPE)

GRRRRRRR

I have two pills left in my BC pack, and I'm coming down off the prednisone, which ALSO makes me tired, cranky and irritable. I don't even want to be around me at this moment.

Oh, and DH is working late late late tonight.

The kids may want to play in their rooms for the rest of the day!

total nerd

or so that's what my hubby called me tonight. LOL. Making more friends, in a nerdy way I suppose. T's preschool went to Fort Langley today as a field trip, and the teachers split us into groups, and I have to say, I was really happy with my little group. It was most of the kids T plays with in and outside of class, so moms I was really familiar with, including one of the moms I scrap with (M). And one of the other moms, who I really like, S, she asked if M and I wanted to join her book club. M's first response was "so is this a 'lets drink wine and eat food and chat' book club, or is it a down to business book club?" We all laughed, and S said it was definitely both. They either meet at someone's home, a coffee shop, or one time at a martini bar. Now that's the kind of book club I want to join. In all seriousness, I've always kind of thought I'd like to join a book club to introduce me to books I might not think to read otherwise. And I love reading, so not a problem! My only problem will be the month it's my turn to pick the book!!! Mrs. Indecisive! OIY. It will be a problem. But otherwise fun! Oh, and M, S, and I are enrolling all three of our kids in some summer daycamps together. Otherwise I think T will get bored!

I'm looking forward to being a nerd, with nerdy friends!

Surprise

For those of you who still occassionally check to see if I'm alive . . . I'm actually here!

Fuzzy, oh so fuzzy. That's how my brain feels after two more weeks on prednisone. Yep, two more weeks. Two weeks on, two weeks off, now two on again, and counting. I rebounded REALLY badly when I came off, and got sicker than I have been in a long time. So this time, I was on the higher dose almost the first whole week, and now, I'm on a maintenance dose for at least another week or two. My docs are hoping it will kick my symptoms into remission for a while. So am I, cause god, if I get sick like I did again, I don't know what I'd do with myself.

However, right now I feel like a mental patient. Okay, not as bad as when I'm sick, LOL, but one of my side effects is tremors in my hands, I can't control them sometimes. Particularly when I'm trying to write or do something. And the fatigue is creeping back in, the prednisone hasn't completely taken care of that this time, but it also makes be creepy awake. So my eyes pop open when I try to rest. Weird combination to say the least. I feel all kinds of space cadet-ish sometimes. Not that I wasn't before, LOL, it's just worse now!

Don't get me wrong, I am thankful for the amount of energy I have right now. I actually had no idea how fatigued I was until I wasn't. I realize now how little I was coping. I know prednisone is not a drug you want to be on for long periods, but it's giving me my life back right now. I wasn't able to do anything with my kids or around my house, and now I can. I felt for the most part that I was walking with lead weights on through water. That is what fatigue feels like for me on a daily basis. Plus all the pain I was dealing with, the arthritis in my back and the 21 canker sores right before I went back on the prednisone this last time. And I was barely making it through. Now I can. So I'll take that for now. Besides, the alternatives are even stronger immune suppressants, so we'll deal with this for now.

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In completely other ramblings, I have also made some new friends, and that makes me extremely happy. Not a surprise to those that know me in real life, I am almost too social by nature, and being holed up with my disease and not many social outlets was hard for me. Being so far away from my sister and the little group of stay at home moms where we used to live, and having our friends out here flung far and wide, and so busy themselves left me very little interaction with other adults.

So anyway, I found out that a couple other moms from my son's preschool scrapbook, and we decided spur of the moment to go to one of the local stores on a friday night together. It was a lot of fun, and we've been back a total of 4 times, different combos of moms, whoever is available. And we're planning many more! There is 4 of us total, and I (believe in my own little world anyway) that I get along really nicely with all of them!!!! And one of the moms organized a little field trip to a great speaker, in a couple of weeks, we're going out for dinner, then to the speaker (on parenting). It's so nice to have other moms to talk to and get together with away from the kids! And for our kids to be in the same stages of development and problems, so you have someone to rebound stuff off of. And not the least of it, I'm actually scrapbooking on a regular basis now, which I wasn't before, so I'm actually getting stuff done. I'm so absolutely the slowest scrapper on the face of the earth, but that's okay. I'm having fun, and I'm actually getting my albums done!

Holed up in my own little world

That's where I've needed to be for the last two months. Absorbing, processing and just trying to get through day to day life. Two months ago I found out I have arthritis. I also found out that it is not likely that my family doctor is wrong. I have been angry, sad, apathetic, frustrated, ready to fight, and just plain tired. My mood swings rival that of a raging pregnant woman. My best friend says I'm grieving the old me. As she puts it, the moment I left the doctor's office, I was no longer the person I had been. I was no longer Kristi with a sore back and IBS, I was all of a sudden Kristi with arthritis and either Chrone's disease or Behcet's disease. I am now not allowed to do some of the things that I was looking forward to starting. I had made a pledge to myself to get into better shape, so that I am better able to play with the kids, and because I just plain like myself better when I'm in good shape. I had wanted to start kickboxing, step class, and maybe find an evening Volleyball league when I was in better shape. Those three things are probably stuff I shouldn't do anymore. No high impact sports for this girl anymore. Those were also three of my favourite athletic activities. Now I have to find new ones.

I decided to allow myself a few months to process and grieve. To be angry and frustrated and feel self pity. I decided I owed myself that, but that I wouldn't let it go on, and that I would start fighting back when I felt I was ready. I think because I recognized that need within myself, things haven't been as bad as they could've been. Sure, I've had some pretty crappy days, but who doesn't?

I still have all the same symptoms I did before. The big difference for me is that before I always thought they would go away, and that they didn't mean anything. Now I know that my symptoms are not going away, they are part of a bigger picture. So now I have days when I get down that I may always have headaches, and that there is no cure for the pain I feel.

On the upside, I also have been doing research on the best exercises for arthritis, and am gearing up to start. I started using the gym here, but had to stop because of pain (needed new shoes with better shock absorption) and because DH was working non stop, so no one to watch the kids. His work will be slowing down in the next month or so, so I'll be able to use the gym more.

I went for my MRI already, but the other tests are on hold. The only appointment they had was the day of T's first Christmas Concert, and they're performing, so I didn't want to miss that. So I wait until the end of January.


In other news, T's birthday was a great success. I had been going to bake a Fire Engine cake, but with everything going on, I copped out and bought a cake pan in the shape of McQueen, and he loved it. It was a bit of a chore to decorate, but nothing like the fire engine would have been to build and decorate. The best gift he got was his Lego. He loves it. He will play with it literally for hours by himself. Sometimes he wants a playmate, but it's so great to watch him create!

The last two months have flown and dragged by. We've been so crazy busy, but at the same time I have been so dog tired that some days pass without us doing anything. I've come to understand that it's just my body's way of trying to balance everything out. If we go go go too much, I get really fatigued and feverish, and I have to nap when K naps. Or I get a killer headache and have to nap. Either way, my body forces me to relax. And I'm trying my hardest to listen to it.