Category: health adventure

This semester has been pretty difficult on me. I’m not ill with other things, like pneumonia or other respiratory illnesses like when I was on MTX. Unlike last semester, I don’t feel 100% dead. But I am struggling. In thinking about things the other day, I came to the conclusion that school is no longer a real option for me. And, whereas last semester that would’ve freaked me right out, I’m okay with the decision now.

At this point, Arabic specifically is being offered earlier and earlier. It continues to force me to get up earlier and earlier. Unfortunately, it makes it very difficult for me to handle my disease. My Humira I think isn’t helping as well as I thought it would. Hopefully it’s just a matter of adjusting dosages. I’m also in so much pain lately. And it’s not just an arm or a shoulder – it’s my knees, my ankles, my hips – all those things you need to move around and do things. Even though my job is a lot easier, I’m still finding myself having to make the decision between whether or not I can go to school or to work – and I have to be able to support myself financially.

Sadly, I don’t think that other people understand what I’m going through. And I don’t expect them to. If someone sees me at work and knows I wasn’t in class because of my disease, but I seem to look fine, it’s hard to understand I know. And I am thankful that so many people won’t know what I’m going through.

It’s just about reevaluating my life. My plan was to work with the UN – in order to do that, you get stuck in the worst health countries first so you can work your way up. I can’t do that. Then I thought I should be a professor – but if I can’t even make it to classes to teach, what is the point? Why should I continue to accumulate loans when I can’t possibly do what I want to with my education. I have learned Arabic, which is something I always wanted to do. And I will always study that part of the world, because it’s fascinating.

But more fascinating to me is my own body and the struggles it goes through. I value more the comments I get and friends I have made because of blogging about my experiences. I have helped people just by being me, and that’s amazing. After reading books and talking to their authors, like Christine Schwab, I know now what I want to do. I’ve been working over the past few days on a book about my experiences with my disease. I hope that it will help others, and I know that it is already helping me.

Now I just face the tough decision if I should really finish my classes this semester. It’s not a good thing to receive bad grades, for sure, especially not for a former overachiever like myself. But at the same time, I don’t think it’s worth the stress to worry about my grades at this point. And again, I’m somehow okay with all of this. I don’t even know how.

I was SO excited after my wisdom tooth surgery – my arthritis had dissipated and was calm. Everything was wonderful…

Until the Friday afterwards, when people at work fought and I got to go deal with it. Ugh.

I won’t get into the whole situation, but just a few days before as soon as laughing gas hit my face, my body was perfect. Yeah, okay, so I had some gaping holes where a few teeth used to be, but other than that… Returning to work made my body hurt exponentially more.

So what did I do?

Well, I’ve found a new job and will be starting that in early October. While I will be sad to leave some of the people that I currently work with, being in management while going to school and handling this disease is just not something I can do. Part of me feels like I’m giving up, but the other (bigger) part knows that I’m doing what’s best for me and that I’m being realistic.

My new job will let me sit down all the time. I won’t have to run around and move heavy things. I also have no direct interaction with angry people, nor do I have to make it right. Instead, I will spend my time captioning  one half of a phone call in order to help people who are hard of hearing better understand their friends, loved ones, and random people. So I also get to feel a lot better about what I do for a living.

And they have benefits. I dunno what they will be like and won’t know until orientation I’m sure. But that’s exciting, and hopefully helpful. And I will get full time hours too. Yay.

Now I just need to get through the rest of the month and the six days I will have to work overnight before I am done. And talking to my boss tomorrow morning. Awesome.

So it’s exactly one week until the boyfriend and I get the keys to our place. I am super excited about it, all except the actual moving part of course. We’re going to have tons of help, so that should be no issue. But I also find myself extremely worried.

I won’t have a day off until next Saturday, which is fine, but I am worried about how my body will react to all this working and then having to lift things. I am so much weaker than I was last year.

Well, weaker isn’t the right word.

I’ve been working out and building muscle. It’s easier for me to lift things. But I also get tired so much more quickly now and that’s really what I’m worried about. I shouldn’t have to carry anything that heavy, but it also doesn’t feel right letting other people do all of the hard work.

No, weak is not the right word. Useless is too strong. Inept makes it seem too odd.

I guess there’s no one word to encompass it, and maybe that’s the fun part about dealing with a chronic illness. There’s no easy way to explain to others how I feel. I am worried that my body will crap out on me, right when I need it to work the most. And worried about other people seeing. I’m okay with my boyfriend seeing how tired I am (to a point) or close friends. But even then, I distance myself from them and don’t really allow them to know how I’m feeling. I feel like I ‘complain’ too much about my body as it is, and don’t want to burden everyone with everything all the time.

After the move, I will just be counting down until August when I can look at switching doctors or at least visit a GP who can give me pain medication. It would be nice to have something stronger than 600mg ibuprofen right now.

Okay, so my rheumy’s office apparently doesn’t handle pain meds. Not quite sure what to think about that. They ‘treat’ the disease, but not the symptoms? Except if I’m flaring, I might be able to get more steroids…? Something here doesn’t make sense. They weren’t even willing to discuss any of that with me. Whatever.

So in the meantime, life sucks. I have an appt with my ‘primary care’ doc tomorrow. Hopefully she can give me something for pain. Otherwise, it’s a referral to the pain management clinic… which I’m sure would be helpful, but I just can’t afford it – the cost or the damn wait.

Bah!

I think I am getting annoyed with the length of winter.

I remember being little and spending time with my great-grandma. She had MS and always had cold hands. I feel like her so much this morning. To add to it, I wish I had a great sweater like her with wild cherry cough drops that’re more like candy than medicine, curled up in a huge fluffy blanket. She really knew how to live with her chronic pain, and I wish she was here to show me how she did it so well.

Also, I’m kind of getting annoyed with people where I work not doing their job right. I’m starting to feel like this is too much stress for me, because I’m having to clean up after everyone *sigh*

I’m ready for my teaching job now, kthanks.