Infusion, confusion, life

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.

STRESS #1: Mysterious gastrointestinal illness that began in early June, which included extreme nausea and stomach pain and upset especially after eating something. Over the last few months I went through a battery of tests and everything kept coming back negative or normal, which is good. But frustrating, too. Luckily, just very recently my stomach seems to be pretty much back to normal. This is a relief, but it’s too bad that I couldn’t really eat anything all summer.

STRESS #2:  My dad had his prostate cancer surgery the first week of August, which was a scary, anxiety-causing ordeal. The surgery went well, however the oncology tests that were done post-surgery on his removed prostate and surrounding lymph nodes showed that the cancer had spread outside of the prostate wall (but not into the lymph nodes, which is really good). That means that there’s a 30% chance that the cancer will come back within the next 10 years. If the cancer hadn’t gone outside the prostate then he would be 99% cured. The thought of it coming back is frightening but I guess we just have to try to not worry about it too much right now, somehow. His surgery recovery has been going well, which is good. He goes back for a follow-up appointment with his surgeon in November.

STRESS #3:  My sister gave birth to TWINS two weeks ago — seven weeks early! Things were growing increasingly frenzied and stressful in my family before the birth anyway, because my sister was becoming more and more immobile and unable to do things. So that meant that my mother, dad and I were needed a lot to babysit my sister’s three year-old daughter (she just turned three in early August). Well, Mom works almost full-time. Dad is retired but he hasn’t been able to babysit because he’s recovering from surgery (he can’t lift things, can’t run after a little kid). So that has left ME to be the main babysitter. I love taking care of my niece but it’s a lot of physically and mentally demanding work, especially now that she has entered into “the terrible threes” (much worse than the twos, if you ask me). I’ve been stressed out and feeling resentful about these family expectations and my mother’s guilt trips. I haven’t been able to get any of my own stuff done and it’s driving me crazy! Since the twins were born so early, they’re still in the NICU unit at the hospital and my sister and brother-in-law have been busy running back and forth to the hospital. And that means a lot of babysitting duties again. I want to help out and I’m happy to do it, but at the same time I feel torn and just plain exhausted — frustrated that I feel like I can’t really live my own life right now while all of this craziness is happening.

CONSTANT STRESS: One sentence should be able to sum this one up — I AM BROKE! And medical bills are especially contributing to this extreme broke-ness. Sigh.

I’m sorry this is such a negative, whiny post but it’s what I’ve been going through over the last few months. But there are good things happening, too, for which I’m really grateful. I have some arthritis writing jobs, which is exciting, and I’m hoping to start doing more photojournalism work (for pay, I hope) soon. I’m feeling a lot more motivated lately to move forward working towards a real career, instead of just dreaming about it.

Thanks for reading and I hope you all have a wonderful weekend!


4 thoughts on “Infusion, confusion, life

  1. Sounds like it has been a whirlwind for you. It’s hard to be part of a family unit that relies on you when you are dealing with chronic health issues. I have found that setting boundaries helps and making it clear that you can help, but only so much due to your autoimmune disease. But I know family situations can be tricky to navigate and sometimes there is no one else to help but you.

    Congrats on the arthritis writing jobs. You should be proud you’ve gotten that together with all that has been happening with your family.

    1. Hello! Thank you for your comment! I’m sorry it’s taken me so long to get back to you. Thanks for being so kind and understanding about my family situation. It is tough having to deal with all of that stuff, especially when you don’t feel well. Yeah! I am excited about the new writing opportunities! Thank you for the support! :)


  2. First time reader, I enjoyed your blog. RA survivor (because that’s what we are) of 36 years. Have had similar issues with foot/leg pain, family and stress all driving moods and attitudes. Hope things are better now. Not an option for everyone but I wear hiking boots that come up over my ankle and I can adjust laces as needed for swelling. Made the difference between not walking and walking. Also, screaming let pain doesn’t wake me up anymore. Who knew? Best $50 investment, ever. Good luck on your journey. Some days are diamonds… some days so not.

    1. Hello! Thank you for your comment and for reading my blog. I appreciate it! I’m sorry I took so long to respond. Thanks for the tip about the hiking boots…yeah I might have to look into that. Having more support for my ankle definitely helps.


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