I Am That Girl

I'm not a trend setter when it comes to fashion. I do enjoy dressing up. But, wearing cute shoes is something of the past because of my oh so sensitive arches. I tend to dress for comfort, and that usually makes me feel better. I know if I leave the house in jeans, I won't be comfortable. I need to be able to flex my knee around for comfort. Skinny jeans sometimes don't allow that, but they do look fantastic on. I've known that I dress for comfort, but it was recently  brought up and made me feel like I could be dressing sloppy. A few weeks ago, I went into Starbucks. It must be their job to try to remember your name AND your order. I don't go to this Starbucks on a regular basis, but they seem to know me. I was dressed in skinny jeans and boots with a baby heel. I had on earrings and a cute scarf. One of the girls made a comment about how I always come in before/after the gym. I didn't tell her the gym is not a place I frequent. Gym clothes(ie, yoga pants) are just more comfortable. I know she didn't mean anything by it, but at that moment it made me feel like I always walk around in PJ's. I love yoga pants. They are the next best thing to sweats. Especially if you're flaring. Omg, or when I have fibro pain and it hurts to touch my skin. Soft yoga pants are the best. Yoga pants get a bad rap. They're not considered "fashionable" or may even sometimes not appropriate. They're the lazy outfit for most, the one's not frequenting the gym. Maybe I should through in some earrings with my yoga pants next time and see if that makes a difference?

I'm Not A Doctor, I Just Play One While On WEBMD.

Working in healthcare, I always tell my patients to stay away from the internet. Diagnosing oneself can lead to much anxiety.

I have followed a RA blogger for quite some time. Arthritis Ashley is well known in the RA and online world for her positive notes and resourceful links about health. She has recently written a new book, a memoir. Currently, I am more than half way done with it. It's a easy read, but with my fatigue it is taking longer than normal to finish a book. She shares about her diagnosis, symptoms, and getting through life with a autoimmune disease. While reading it today, I had a AH-HA moment. She was talking about her diagnosis of Chiari. I've heard her speak of this before online, but have never really known what it was. So, doing the patient thing, I googled it. The next thing I know, I'm emailing my doc asking for a MRI. My neurologist has never evaluated me for this and I have had many of the symptoms for years. Just last week, I was at a PT appointment and they asked me to stand on my tip toes. I nearly fell over. I have zero balance. My headaches are almost a daily occurrence, and the neck pain at the back of my head feels like I can't move my head left to right. And, lets not talk about the fatigue. I fall asleep driving home at 4 in the afternoon. What the heck?! Although, we never want a serious diagnosis, we always strive for answers. Something that makes sense. If I have this disease, then the symptoms would feel like they fit.

Down In The Dumps

I've been really frustrated lately. For a few reasons. I started PT a few weeks ago for my knee pain. They showed me how weak my body is. It was really disappointing. They had me try to walk without a limp, kind of hard when you have knee pain when you walk. Then, they had me stand on my toes. I didn't realize how awful my balance is. God help me if I ever have to walk in a straight line to prove sobriety! They gave me exercises to do at home. Of course I haven't been able to do them because of time restraints and my awesome fatigue.

My home life is going to drive me into a wall. I always tell people that my family helps me. When, in truth, I feel like I'm the one that helps them. I come home to a crazy mess every day after work. I overdraw my spoons just to clean it up before I pass out for the night. Then, its destroyed again in the morning. I don't always have time to do it in the morning. It's draining. I feel like I'm literally stuck here. I've helped mom with bills for years. Now that I have a car payment, I can't afford to move on my own. It's just not fair. I could support myself if I didn't have her bills.

I ran out of medication weeks ago. I haven't told anyone. I haven't been able to afford my refills because I had to buy groceries for the house two paydays in a row. It makes me want to cry because I know what will happen. I don't want to start flaring. I'm putting myself in a bad position, but I don't know what else to do.

I always hear about people going missing, then they're found safe. They just needed to get away. NOW, I know why people do that. They need a break from life, just for a minute. I really wish I could run away and turn off my phone and it just be me. Just for a day or so. If only.

Living The Dream

I'm living the dream right now. Well, my dream anyway. I'm cuddled on the couch with my blankets and catching up on dvr. The family is all out of town, so the house is nice and quiet. Nobody is here to make fun of me for wrapping up in a blanket when it's nice outside. I don't have ANY plans for the weekend, so I get to sleep in! I'm just in a happy little bubble right now.

I was achy all day at work, completely pushed myself to make it through the day. My FMLA is still on hold at work. I tried all week to get ahold of my HR lady. She made me re-do my paperwork three times. Ridiculous.

Pain Ranting

These headaches lately are so draining. Everytime I get a migraine, it takes at least 2-3 days for it to slowly go away.

On top of my nearly constant headaches, it rained this week and we had some temperature changes. That makes me achy. My entire body is achy. You would think I would be a pro at this RA thing. I've had RA nearly my entire life, yet I never know what to do. I stopped contacting my rheumy when I'm in pain. I don't want to keep adding more pills.

It's just frustrating. Everyone wants to be their best, to feel well. I really want to start a pilates class. How do I do that when I'm falling asleep driving home from work. And, my hands hurt so bad to hold the steering wheel.

I wish there was a local support group for people with RA. The online groups are starting to get really depressing.

Third Opinion On My Knee

This past week, I saw another orthopedic doc. I was really starting to get frustrated that my doc that did my surgery last year just wants to keep injecting me with cortisone, even after I say it doesn't really help. I wanted another opinion. If this is how I'm going to live the rest of my life, in pain and not able to stand or walk for long without pain...then I needed someone else to confirm that.

This new doc was really straight forward. Which I love and really appreciate. He actually had a different diagnosis altogether. He says the pain that I'm feeling now is actually called "jumpers knee". It has to do with my patella having some tendinitis around it. But, not inflammatory tendinitis, more degenerative. He's going to send me to physical therapy. Not a injection, not surgery. But, someone to hopefully alleviate the pain and fix the problem. I read a little about it, and it's common for people with knock-knee, which I have. And, knock-knee is common for people with JRA, which I was diagnosed with.

Fun Has It's Price

Last weekend I went to a "Heart and Stroke ball" put on by the American Heart Association. I was invited because I work in heart transplant. It's amazing to hear peoples stories and how far they have come because of research. Technology has changed so much over the years. It was amazing to hear how much money they raised, it  truly is a great cause.

 I was excited to have been invited because of my field of work, but also because it was a "ball" and I got to dress up. The couple weeks leading up to it was difficult, finding the extra energy to shop for a ball gown and shoes. Getting nails done, hair done. Yes, it was all for a fun night, but it later took its toll on me. The night itself was good, I felt well. Having not worn heels in so long because of my RA, I didn't think about how much this would hurt my feet. There was a lot of standing. Luckily, I was smart enough to valet my car at the event and not park in the parking garage a few blocks away. Sometimes, the extra price is totally worth it.

I rested the next day, but ended up getting a migraine that lasted for 4 days. I had to call in sick to work on Monday because I was so nauseous. People don't realize how much a migraine takes out of you. It knocks my body down. I can't focus, I can't eat, it is completely debilitating. I really think it's because I was pushing my body so much to get so many things done just for one night of fun. One night of "normalcy".