Oh My Aching Back

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There’s no question why my body is rebelling at the moment. I have been going in high gear for more than a week, driving my kids from one practice to another, trying to keep up with work, social activities, sports, voice lessons, doctor’s appointments, and family obligations. I knew at some point soon my body would cry uncle and that day was today. I actually woke up okay, but as the day went on my body got more and more stiff, starting with my back and going into my hips, knees, and feet. At this point even my hands hurt. It’s the first time in quite a while I opted to take medication for the pain.

I didn’t think I’d fall asleep and I have to be up early for a meeting tomorrow, so Ambien was out of the question. I figure I have a good 20 minutes before the pain medication begins to hit. I can catch up with a blog. Besides, the pain medication doesn’t affect me nearly as bad as the Ambien. It just seems to take the edge off the pain without making me all crazy, like Ambien.

Today I started to get a little stressed about our upcoming vacation to Disney. I’m looking forward to it. Obviously I love seeing my children excited, I just don’t like tension, and traveling with family…especially my in-laws, can be tough. I’m just trying to make the trip about my kids and what they want to do. It’s going to be up to them and we’re going to play things by ear without over planning too much. Last time we have to follow everyone else’s schedule and I won’t do that again. I don’t mean to sound like I’m not excited. I am starting to get excited. I think I always get nervous before I travel.

This is the first big trip I’m taking since being diagnosed with rheumatoid arthritis and fibromyalgia. The last time we went to Disney, I had not problem walking for 9 hours a day for 8 days in a row. I don’t know how I’m going to do this time. Actually it was the week after we returned home that I felt like I got hit with a bus. At first I thought my legs were sore from all the walking,  but instead of getting better, it got worse and worse. The doctor diagnosed me with Lyme disease. That was the beginning of my journey with autoimmune disease.

After the course of treatment for Lyme didn’t help, I was sent to a rheumatologist, who didn’t think I ever really had Lyme disease. Long story short, here I am with RA and fibro, and I’m a little panicked about how I’m going to handle walking Disney in the July heat from sun up to sundown. I’ll be fine on the first day, but what if I can’t do it on the second day? Do I bring my cane? Do I think about renting a scooter? OMG, I’m thinking about possible renting a freakin Hoveround at Disney. This is a new low!

I suppose I’ll figure it all out next week and I won’t worry about it at 12:45AM when I have a meeting in the morning.

A short recap of everything else that’s happened. My daughter sang in her recital yesterday. It was such a huge moment for her. Two months ago she refused to even try to sing in it because she was so scared. She’s come so far in the past few years, but especially these last few months. I knew she was scared on the way there, but the little girl she was singing with was a little ham, and that really put my daughter at ease. The other little girl is very sweet and silly, which brought my daughter out of her shell, so to speak, and she started to have more fun with it. Heck, she even cracked a smile a few times during the performance.

She didn’t sing alone, and it wasn’t one of the solos that blows me away during her voice lessons. The songs were light and easy, but she did it, and even more than that, she said it was FUN! That was a huge moment in her life. I was a very proud mama!

My son is having a tough time with travel baseball. He’s in a hitting slump and it’s psychological. He thinks he sucks, and he’s telling that to himself. We bring him to the batting cage and the kid nails the ball. He gets up in front of the pitcher and he freezes. About 75% of the time he gets a walk because at the moment he’s the smallest kid on the team (he has my genes) and the pitchers have trouble adjusting pitches to him. The other 25% of the time he strikes out. Tonight I had a long conversation with him about this time vs, his spring team where he was hitting the ball really well. I think he really just doesn’t believe he can do it on this team. I have my work cut out for me, but I will get him confidence up.

And baby #3 is still vying for starting makeup tutorials on youtube. I have no idea where she comes from, but that kid just keeps me laughing all the time. From making me buy a kabuki brush so I can properly apply loose powder, to making sure I only apply blush to the apples of my cheeks, she is one smart cookie. I feel like so much time is devoted to her brother and sister’s activities that I need to make sure she gets back into her own things in the fall. Having three kids is not cheap!

Anyway, I should try and get some sleep now that my pain is slowly subsiding with the medicine. I don’t like taking this stuff, but I’m so thankful I have it for nights like tonight.

 

 

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Swelling, Brain Fog, and Pain…Oh My!

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I’m not doing much better today. I finally fell asleep last night around 4AM, and then took the morning off and slept until noon after I got the kids on their buses. My hands are more swollen then they have ever been, and I can’t even tell you what body part hurts the most. I hurt everywhere!

Days like this are so hard, and I know my fellow autoimmune sufferers can understand. I don’t want to sleep all day. I have a lot of things that needed to get done. The people who say “just push through it” don’t have a clue. I am the person that just pushes through. Most moms take care of themselves last. We aren’t allowed to get sick. We hold our little ones as they cough all over us, and when we finally get sick the caring for the children doesn’t stop. We push through.

I guess that “push through it” annoys me because it implies that I’m not trying to push through the day. What many people don’t know is I’m pushing to get through of most days, but they don’t get that. When I have a day like today, there is no pushing through. I can’t move without intense pain.

I’m walking hunched over, and when I get up I feel like my knees are going to give out. I even had trouble holding my cup of tea today…so NO, I’m not pushing through anything. I’m letting my body guide my day and doing what I need to do to get through. I refuse to let anyone tell me that’s some kind of failure…giving in and staying in bed most of the day. As far as I know, I’m the only person in this body and no one else can judge the level of pain I’m in.

After I put the kids to bed, I took some narcotic pain medicine. The thing I hate the most about it is that they all seem to make me itchy. I constantly scratch myself when I take percocet, vicodin, or dilaudid. It’s some weird reaction, but I would rather be itchy than in pain. To be honest, the medicine just took the edge off the pain. It’s not like I’m feeling good at the moment; I’m just in a bit less pain.

Brain Fog

I don’t think I’ve touched on the topic of brain fog much on my blog yet. I think it’s something I don’t like to admit to having. I’m ready to tell you, that today was also hellish in terms of brain fog. I know my routine, yet for the past few days I’m forgetting things. Last Thursday I forgot to bring my daughter to dance simply because I didn’t remember it was Thursday.

That’s just not like me. I know these storms we’ve been having contribute to the amount of pain and other symptoms I’m having, but I’m just not sure what to do about the brain fog. It doesn’t seem to get better with sleep. I’m at a loss for what to do. Any helpful hints are most welcome.

Going Back to the Rheumatologist

I’ve also given myself a deadline of the weekend to start feeling better. I really wanted things to work going off my RA meds, but I’m seriously considering going back on the Plaquenil. I have researched other things I will ask the good doctor about, but I just can’t keep going on in this kind of pain. I want my life back!

Tomorrow is another day, and I’ll work on being less crabby and less of a downer. We all have days like this, I’m sure.