Monday, January 13, 2014

Struggling

If I ever learn to cross stitch, I'm making a pillow that says "Being a Human is Freaking Hard."

It'll go right next to the pillow that says "We consider cupcakes a breakfast food."

The medications I'm on for my bone infection give me symptoms similar to those of chemo.

My bones and joints ache to the point that I haven't been to get out of bed. Or even role over without help. And if I do get out of bed poor husband needs to help me hobble around.

I'm exhausted after 20 minutes of any activity.

My neck glands are so swollen that swallowing is really difficult.

Nausea and throwing up. Check. Everyday.

Dry mouth, chills, night sweats, difficulty breathing, constant low grade fever. Check, check, check, check.

The antibiotics kill my kidneys so I'll let you figure out what that means.

I've honestly never been in as much physical pain as I have been for the past 2 weeks and I really don't know how I can do 4 more of this.

I've been trying to tell myself that I shouldn't feel bad for myself. That there are people who have it much worse than I do. Which is true.

But then I thought about what I would say to someone who was in my place if roles were flipped. I wouldn't say "Suck it up. Deal with it. Don't complain, there are people who have it worse." I would say "It's going to be OK. Take it easy. I know this is really hard, and I'm so sorry you have to go through this."

But it's ridiculously hard to say that to myself.

So truthfully I am really struggling right now. This is hard and it bites and I can't help but cry sometimes because this is exactly how I didn't want our year to start. We spent so much of 2013 at various doctors and we finally got our massive medical bills from that taken care of, only to start 2014 with almost daily doctor visits and I'm more than sure I've hit my deductible for 2014. Already.  And remember how I said my goal for 2014 was confidence? Well I know it will sound shallow, but I do get a lot of my confidence from being able to take care of my family. From being on top of things. From finishing projects and playing with my boys. I cringe with guilt every time we need to get a sitter. And now I have a hard time making it down stairs more than once a day. I was so looking forward to the plans we made for our family in 2014 and now everything is on hold. I know this will get better, but sometimes the darkest hour is just before dawn.



I know I need to give myself a break if for no other reason other than I don't have the energy to fight it.

So.

This is kicking my butt hard. I'm hoping the good that comes out of admitting that is something along the lines of humility because I have a feeling that's something I really could learn from this.

And I cannot thank those of you enough who have served our family. By watching our boys. By sending us dinner. By sending us texts and emails and phone calls. For the prayers and good thoughts.

Thank you, thank you, thank you.

You guys rock.

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14 comments:

  1. I'm so sorry you're going through this painful experience. Wish I could help.

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  2. thinking of you, julia, and sending you positive thoughts!!! xoxo

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  3. Whoa! I missed the post about your foot! Just went back and read it. I feel terrible! Yes, there are worse things, but with 2 little boys to take care of, this is a lot on you! Take care of yourself and let others help you! Thinking of you!

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  4. Oh Julie, I am so sorry you are going through all this. I wish I could reach right through the computer screen and give you a hug. Sending you long distance love and healing thoughts!

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  5. Julia, I am so sorry. That really really sucks! Although I have never had all of your symptoms combined, I truly know what it feels like to be sick on going with my pregnancies. The constant nausea/vomiting, migraines & burning eyes, and sciatic pain, not to mention the anxiety attacks and depression, all rolled in one for weeks or months. It is hell to go through so much. But you are sooooo right, you have to give yourself a break. Embrace this trial and when you are all better, throw a new year's party with your family or whoever else you want to invite and get rolling on the goals and plans you have for yourself. It's possible after this trial is over you will have either new plans and goals or you will have a firmer resolve to go forward with the ones you have made. It is never easy to be in the belly of the beast , but even the whale spat Jonah out. You too will make it through this and be better for it. It's ok to take care of yourself right now. This is the time in your life where it is truly OK to be selfish and no one will blame or hate you for it. But anytime you just want to say, "this sucks" I am only a phone call/message away. Saying prayers for you and sending my love.

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  6. Ugh. What a lame start to a year. I guess the good news is, it ain't gonna get any worse. Ha! Here's to life not sucking really, really soon.

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  7. Julia, I am so sorry you are going through this. It sounds pretty terrible. I know 2014 will still be awesome for your family - just on a bit of a delay. Thinking of you.

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  8. I hope you feel better soon. Just know that's it's totally okay to whine and wallow and scream that life sucks and curse (probably not in front of the kids, though) sometimes. There is no relativity with pain and suffering, and feeling bad about feeling bad only makes you feel worse. But one day you'll be healthy and happy and strong and you'll look back and think "wow...remember when I went through that? I'm a freaking superhero!" Until then, praying for you. :)

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  9. OMG, I don't even know how I stumbled upon your post this morning. But I think it was supposed to happen.
    I've been so down this week and in such a bad mood with all the stuff that has been happening. Love the phrase "sometimes the darkest hour comes right before dawn"…My aches and pains aren't nearly as bad as yours but it is fitting for my situation too.
    From one Julia to another ;) I hope you get through this soon and I'm wishing you the best.

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  10. I'm sorry you're going through such physical and therefore mental pain.
    I wanted to share a snippet of lyrics from a Gary Wright song: "Every storm runs out of rain, every dark night runs into daylight. Every heartache runs out of pain." They're not in order, but each one of the lines in that song has made me smile at their reminders.

    Take care of yourself and remember you do NOT need to get up every time you think you should. I've followed you for awhile, and will continue to check in on your progress and improvement. Keep the faith, dearheart.

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  11. Oh Julia, I feel for you so much. You can do this. I know you can. Ask your doctor for help. Having had similar issues, I'm going to let you know what worked for me. It may not all work for you but it's worth asking about. For the vomiting, Zofran before eating. They can prescribe it in regular swallowable pills, I puked those up. Then I tried the sublingual kind that melts in your mouth. I still threw up sometimes but it helped to lower the frequency by a good 50-70% over time. For several months it was the only way I was able to keep food down. Before the zofran I lost 15 lbs. in 2 weeks. For nausea, some people in my NMO group have had good results with taking ginger pills. There are also medical options like the scopolamine patch that you wear behind your ear for 3 days at a time. Personally, I experienced some awful side effects but I had been using the patches for an extended period of time. Your doctor might have an opinion on whether or not they'd work for you. As for pain and exhaustion, there are many remedies for those but it's all about finding what works for you and targeting the specific kind of pain you have. I am thankful everyday that I only have to care for myself, I can't imagine what it must be like looking after your boys too. Heat can aggravate exhaustion. I wasn't allowed to shower without someone right outside the door for a very long time because the risk of falling is high. I would highly suggest getting a shower seat/bench if you have the room in your tub/walk in. I got one at a thrift store for just a few dollars and scrubbed it down. I was able to at least sit during my lukewarm showers and try to conserve energy so I could make it out of the shower unaided. It sounds like you're handling this really well. Sometimes life is hard, but it won't always be this way. Rest yourself while you can. Remember, it's not your fault and you would do all of those things you want to do if you could. Right now is the time to let your body do what it needs to in order to heal so you'll be back to your normal self soon. Nobody ever says it but serious illness is just as much a mental battle as it is a physical battle. You're strong, you can do this.

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  12. Wow, I didn't realize I had typed so much into the reply box. If I could go back I would've made it more coherent and split it into paragraphs. Sorry! hugs!

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I really appreciate all of your thoughts and comments! They bring a smile to my face!