Infusion, confusion, life

September 13, 2013

Remicade infusion

Remicade infusion

I had my bi-monthly Remicade (infliximab) infusion a week ago which was exciting and fun as usual (not). But I’m thankful for it, especially because my stubborn right ankle and foot have been flaring up worse again lately. Why? Stress? I’m guessing stress. Or else God hates me right now. Maybe both. But seriously, it’s painful and irritating and annoying and I don’t have time to deal with it. I also really don’t want to go back on prednisone, which I’ve been lucky to be off since early June. Will I ever be off of that evil yet wonderful drug for a whole year again? I wonder. But back to stress — there’s been a lot of it going on in my life the last few months. Well, all summer really.

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The RA Clock

September 1, 2013

My blog post was just published on RheumatoidArthritis.net the other day.

Check it out here if you like –

“The RA Clock”

Happy Labor Day weekend, everyone! I’m heading up north soon to spend time with my cousins. Small town Minnesota — can’t wait!

-Angela

RheumatoidArthritis.net

August 28, 2013

A new RA website is officially launching TODAY – RheumatoidArthritis.net

It’s a cool site, full of information about rheumatoid arthritis for patients, families, spouses — everyone really! A great part of this site is there is a community of bloggers sharing their personal stories of living with RA. And the exciting thing is, I’m going to be one of their featured regular bloggers! So now in addition to blathering on about medical appointments and swollen joints on this blog, you can read my posts over at rheumatoidarthritis.net too. Whoo! Actually those will probably be a little more organized structurally. And maybe more well-thought-out. Although I do try to not sound like a blubbering idiot on here, too, I swear. Ha ha. In any case, I hope you like the new site and my blog posts.

So check it out! It’s a neat site and I think it will be a helpful resource and source of communication and community for people affected by RA.

Well, this is a nice surprise! About a week ago I received an email announcing that my blog has been chosen as one of healthline.com‘s best rheumatoid arthritis blogs of 2013.

Check out the other 19 blogs that were chosen, in no particular order:

The 20 Best Rheumatoid Arthritis Health Blogs of 2013

Best Rheumatoid Arthritis Health Blogs

Up north

July 15, 2013

Osakis, MN

Osakis, MN

I went up north (northern Minnesota, for those of you not familiar with the “up north” expression) this last weekend for an annual family event/get-together. The weather was mostly cloudy and rainy which is a major departure from the usual scorching, unbearable heat that happens that July weekend. I stayed with my cousins, aunt and uncle, and some other family friends in an old farmhouse just outside of the town of Osakis. Even if the weather wasn’t perfect, I just loved getting out of the city for the weekend and away from the stress of “normal life.” I’ve always fantasized about living in a small town or out in the country for a summer, and I still think about it. Would I really like it? I know it seems like I’ve been doing a ton of traveling over the last few months, which is true. But I still feel like I need some sort of vacation. I feel like I can think about things so much easier and clearer when I’m away from home. And really, I need to focus and start making some major decisions here. I’m tired of floundering around, feeling like I don’t know what the hell I’m supposed to be doing, or how to do it. Although it is admittedly difficult to stay on track with things when your life is constantly being interrupted and derailed by chronic illness and everything that goes along with it (flare-ups, doctor appointments, physical therapy appointments, sickness, fatigue). But anyway — this post doesn’t have much of a point, I guess, except that it was good to get away, and I would like to go back to Osakis again before the end of summer. Realizing the things that make you feel good and better is an important part of healing and managing your health, I think. I don’t know why it’s such a struggle sometimes.

Hope you all had a happy weekend!

Angela

Weigh-in

July 10, 2013

UPDATE 7/12:

Well. The good news is I didn’t gain any weight. The bad news is that I didn’t really lose anything either. Ok, I lost 15 oz. Big whoop. I was really disappointed after my appointment Wednesday; I thought for sure the work I’ve been putting into losing weight was going to show some results. A pound at least. Nope. I want to give up and just stuff my face with a million pasta/cheese/bread/chocolate calories. But I’m not going to give up. Part of this makes me so pissed off to try even harder. But I don’t know — it’s not easy. I’m also very disappointed and angry that I can’t ride my bike right now because both knees are flaring up. This happened two years ago when I was biking a lot and it turned out to be a biking “injury” and not from my RA. I think I was pushing myself too hard this time and overdid it. But for now I need to rest my knees and hope they return to their normal, pain-free state soon. Even if RA didn’t cause this particular pain/flare-up, it’s not helping my knees to heal. So yeah, I’m upset. This really makes me want to scream and punch stuff. Ah, that probably won’t help though. I’m going up north tomorrow morning for the weekend for an annual family event, which I’m looking forward to a lot. Hopefully it will be a nice little getaway and will make me feel better.

__________

I have my Remicade infusion tomorrow (well technically today, since it’s 12:43 AM), and in addition to the much-needed medication, I’ll find out if I’ve lost any weight. The last time I got weighed was almost a month ago, I think. I’ve been trying very hard to exercise and eat less. However, I’m afraid that once I step on the scale tomorrow afternoon it will show that I haven’t lost a thing. I swear my metabolism is broken/comatose. I’ve also recently lowered my Celexa dose and I’ve been getting acupuncture treatments for weight loss along with all of my other health problems. Hopefully something will start to work. I would be ecstatic if I could lose even just five more pounds. I’ve managed to keep the 10 lbs off that I lost last spring/summer, which is great. But, I haven’t been able to lose any more weight since then, which is really frustrating. What do I have to do, starve myself? I don’t think that’s a smart or realistic option. Please cross your fingers that tomorrow’s appointment brings some good news!

Responsibility

July 9, 2013

I’m so angry and frustrated I could scream. I probably shouldn’t be writing about this but I doubt my father will ever read this post (or this blog), so who cares, I guess. As I wrote in a previous post, my dad was diagnosed with prostate cancer this spring (some higher grade cancer cells were found during the biopsy), which has been a very stressful and frightening thing to deal with. Even worse, my dad has been acting like an idiot about it. He put off making a decision whether to have radiation treatment or the prostate totally removed with surgery. We, my family, all wanted him to opt for the surgery because of the risks radiation treatment has, and BECAUSE IT’S CANCER. Get it OUT of your body! I really don’t understand what is wrong with him. He’s been acting like it’s no big deal he has cancer, and it’s been driving my mother and my sister (and me) absolutely nuts. He must be in denial. I understand that surgery is a big deal and a scary thing, but the other choice, having cancer spread and KILL YOU with a MISERABLE DEATH is not a better option. He is also a bitterly stubborn person and is very sensitive whenever he gets the slightest feeling that someone is trying to tell him what to do. He will then be immature and do the complete opposite. So, trying to sit down and talk to him seriously about this stuff hasn’t been very easy or successful. We’ve basically been silenced, tip-toeing around the issue, while growing more and more anxious and upset about it.

Anyway, I found out today from my sister that Dad finally scheduled his surgery but of course he can’t get in right away. His surgery date isn’t until the end of August. He’s been screwing around all spring and summer putting off making a decision about which treatment to have, and then once he decided on the surgery, making the surgery appointment. Also causing stress in my family is that my sister is due to give birth to twins in early October. But as she gets closer and closer to her due date, those twins could arrive at any time. And she is going to need a lot of help from all of us – me, Mom, and DAD. How can we help her while he is recovering from surgery? This is really bad timing, but it didn’t have to be. If he would have made the appointment and had the surgery already we wouldn’t be worrying about this. Worrying about the cancer having more time to spread. Worrying about my sister getting dangerously close to bed rest and giving birth. My poor mother is about to have a nervous breakdown right now. And my dad? He doesn’t care, apparently. So today I have been making phone calls to the surgery scheduling department and his urologist’s nurse. I feel guilty and sneaky making these phone calls behind my dad’s back and he would kill me if he found out I’m meddling in his health business. But we desperately need to move this surgery date up on the calendar. Although after speaking with the scheduler just now, I fear it’s too late, unless another patient cancels. I’m so mad. I can barely take care of managing my own health; I don’t have the energy to deal with my dad’s medical issues when he is perfectly capable of doing it himself. But he’s always been very nonchalant when it comes to his health. I am the total opposite. As soon as I don’t feel well I’m on the phone with the doctor’s office, making appointments, playing phone tag, until I’m sure that everything’s okay. Good God, if I were diagnosed with cancer I’d be making an appointment for surgery the next day. How he just doesn’t give a crap is unbelievable. Is this a preview of what’s to come as he ages and will need more medical care? So far in all of his 66 years he’s been lucky to not have hardly any health problems. Things can’t stay that way forever. But he’s still too young to be acting like an immature, senile, self-centered old man.

In addition to being worried about my dad, another part of this that really bugs me is that I feel so frustrated when I see other people refuse to take responsibility for their health. I work incredibly hard at trying to manage my own (which most people don’t realize). And trying to make myself be as close to a normal, healthy person as possible — yet all the while feeling great frustration, loss, anger and sadness at the realization that my disease will never go away and I can’t ever be totally “normal” or healthy. People who don’t even have a chronic illness to deal with, yet still don’t care about taking care of themselves really irritate and disgust me. It’s like a big slap in the face to those of us who are working hard to be healthy.

Maybe this post sounds harsh, and I know I’m stereotyping all over the place here. But needless to say, I am just so upset right now.

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