Wait, what?

I’m having odd muscle issues. It’s happened a few times before, but always in my sleep so I didn’t really think anything more of it than an odd muscle cramp or migrating charlie horse. But apparently, when I actually got to look at it, I realized how fucking creepy it was.

Sorry, there’s not another way to put it.

So Christmas, right? I worked a lot. I woke up and my right leg was super tense. My right heel hurt like a bitch – it hurt to walk, hurt to put pressure on, but I fought through it.

Later in the evening, the leg muscle tension has moved into my right foot. We are watching X-Files and waiting on nummy pizza when all of the sudden, the three middle toes on my right foot froze. Maybe even my pink too but it’s so small I wasn’t really paying attention to it.

They didn’t just freeze like in place either. They fucking curled down towards my foot. It was like all the muscles in my whole leg down into my toes froze up. It was like that for, oh, a minute at the absolute most but probably 30-45 seconds realistically.

It was the scariest fucking thing I’ve seen in a while.

The muscles are tense today, but not as bad. I don’t know how or why this happened. I googled it, obviously, to find that it could be lack of potassium, magnesium, from my RA, or from Parkinson’s or MS.

My great grandma essentially died from complications caused by her MS. I watched her, as a very tiny girl, lose her mobility. I have very few memories of her before her Amigo go-cart. Things just got worse and worse for her. She eventually had a stroke, and ended up in a nursing home with a broken voice box because of the dip shit doctors.

And I have always been afraid that is going to happen to me too.

Yay for borrowing trouble and googling stupid shit my body does.

PS if you’ve had this, want to share what’s up? Please?

I think I’m in love…

With my new rheumy. And her nurses. And the whole office.

I got to the office, and they had like 80 handicapped parking spots near the entrance. Awesome. But I found a “normal” spot. They have a self-check-in kiosk – score. I avoided the long line. Not that it super mattered because I got in about half an hour early.

The waiting area was nice. It was large, and there were a ton of chairs. Rheumatology shares its waiting area with vascular surgery and cardiology. An interesting mix, but there was a good separation in waiting areas.

The nurse that took me back was very nice. He was a veteran, probably mid-30s, with an awesome sense of humor. I found out he’s a float nurse from GP hanging out in rheumatology sometimes, but I love him. We talked about Arabic, knee problems (he SO wins that one, even before his three deployments), and he really made me feel comfortable. He also super liked joking around with me. It was awesome, almost like having my uncle there.

My doctor herself was so nice. She asked me why I was switching, and I told her that my former doctor’s attitude just wasn’t working for me, that I wanted to be more involved with my heath and walked through these things – not just for me but for the health blogging community.

She talked to me – really talked to me. She got to know me, and listened to me gripe about my health and my life in general. She did a full examination, listening to me about the joints that are sore. We came up with an action plan together, and that’s exactly what I wanted.

So, I’m going back on MTX – but the injectable. She also gave me a stronger NSAID, but one that is known for not being harsh on the stomach. I have a referral to PT, a GP, and an ophthalmologist. The ophthalmologist part was interesting, just because she asked about my history with uveitis. As I told her, she looked at my eyes and began writing down info on a great doctor. She could see that my eyes were not symmetrical and that they were a little red.

Finally.

I am so excited.

Her nurses came in again and gave me a flu shot – while being hilarious. I spent like 15 minutes talking with one of the nurses, just hanging out. I almost didn’t want to leave.

I feel like I’m in charge of my health, and that’s exactly what I needed.

I feel so lucky to have such a wonderful doctor, and I can’t wait to see any of them in the office again.

Christmas comes early

Or, at least, I hope it does.

The last week has been amazing. I’ve watched everyone stress out about finals and studying, and not had to deal with it for once. It really was that sinking in moment since making my decision to stop school. My body feels a lot better than I know it would if I were doing all this school stuff.

Still, it’s in rough shape.

A couple of days ago, my left hip hurt so much. It almost felt like it was swollen so much it wasn’t in its socket. Way to be, hip. Then, of course, my knee started hurting. And then, because I was favoring my right side, that started hurting.

Seriously.

Now, tomorrow is something I’ve been holding out for for a couple of months – a new rheumatologist. I’m nervous, because I always am. I know I’ll have to tell my whole story (for the 10 millionth time), get blood taken (blech), and who knows what else. I’m hoping to walk away with the beginnings of trust in my new doc, supposedly one of the best rheumatologists in Madison.

I’m also hoping to walk away with a few different medications, and a dosage change for my Humira.

Humira helped so much at the beginning. As it got colder, and my body got used to the medication, it stopped helping as much. I went from being able to hike miles this summer to being super out of shape and sweating and getting out of breath during a mile and a half walk with my boyfriend. I couldn’t even do easy yoga poses last night that I can usually do easily. So lame.

Here are my main goals for my appointment:

  • See if she actually believes me about my pain
  • Get her to correct dumbo doctor’s mistakes in my medical records
  • Check for fibro, depression ( 🙁 ), and uveitis
  • PAIN MEDICATION THAT’S NOT IBUPROFEN GODDAMNIT
  • Dosage changes for current meds
  • Ideas for a good GP
  • Dietary/exercise suggestions
  • And maybe a fibro medication that helps with the sads too
I really really hope that things go well, because I really really need them to this time around.

The Biggest Decision I’ve Ever Made

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.

What is it like to be stuck at home?

On any given day, everyone wants to stay home. It would be nice to stay at home, lying around all day and watching TV.

But what if that was all you could do?

Not so fun huh?

Today is the first day out of the last few that I have felt well enough to do really anything. I did go to work the last two days, because I have to being in training still, or I’d lose my job. Not an option. It is hard to explain to my friends what exactly it feels like. But it’s like being trapped in your own body and there’s nothing you can do about it.

On waking up Monday, I could barely move. It got worse before it got better, and Monday night I was limping pretty good at work… which is okay, since I get to sit mostly. Tuesday was a little better, but still I was too swollen and in pain to do anything until like 2pm – and then the big thing I did was shower, something I physically couldn’t do Monday. Yay.

When showering is your big accomplishment, it’s a sad day.

All of this because I tried to taper my steroids down one milligram. It makes me mad that I am so dependent on them, but at the same time I am thankful I am not more dependent on them like many others I know. 5mg a day is much better than 50 or more. But I know one thing – I’m not going to make that mistake again.

PFAM: World Arthritis Day Edition

Happy World Arthritis Day (if that can be a happy thing)

Sadly, just like the last time I hosted PFAM, I barely got any entries. I am not quite sure why, but oh well I guess. It seems like a lot of people who used to participate in PFAM don’t anymore unless the topic REALLY moves them.

The sole post that I have to share today is from Kathy over at FibroDAZE. She has gone through many changes in the last few months, and as such feel like she is living in her very own soap opera. When new medical issues pop up, life can definitely feel that way. Thanks Kathy for being wonderful and participating in this edition of the PFAM!

Late last month, I posted about my own personal dietary changes and how I thought they were helping. My suspicions are all but confirmed. It is very difficult to cut out staples in diet, like dairy products and gluten-full breads and such, especially for me. My father’s side of my family is Italian and, while I did not know him growing up, my mom always encouraged me to embrace my Italian heritage. It is driving me crazy, not eating tons of breadsticks soaked in garlic butter and parm cheese… Or, likewise, one of my favorite things about Wisconsin is frozen custard. We didn’t have this on the west coast/northwest, and I fell in love.

At least the best part about it is that I don’t really crave those things that often anymore. One of the wonderful people who really encouraged me to look at alternate grains is a man I have barely interacted with, but who has shown me a lot about nutrition – Chef Brad. My boyfriend and I just think he is wonderful and he has helped the both of us handle trying to eat healthier.

When I have added in dairy or gluten, I can tell how horrible my body feels. After eating some gluten the other night, I felt as though I had a body hangover the next day. My finger joints were swollen, and my knees were horrible. I could not go to classes and I was lucky that I was able to go to training at my new job in the late afternoon/evening. Likewise, adding dairy to my diet just creates tummy troubles – the gurgles, the heartburn, upsetness, and even more fun.

While it will be hard to stick to, I know that this change is right for me. I have felt so much better between that and starting my new job. The three minutes of delicious breadstick eating is not worth the joint pain and stomach issues.

I’m just glad I can still eat potatoes 🙂

Am I Gluten and Dairy Intolerant?

I think so.

Since my wisdom tooth surgery, I have been being nicer to my body and getting more protein. Part of that involved paying more attention to my metabolism – which right now is kind of crazy slow. Lame. But I digress. In paying more attention to that, I noticed that certain things make me feel horrible – not just sick to my stomach horrible, but I noticed that my RA starts to flare up more after certain foods. I thought maybe it was junk food. So then I cut back on that again and felt a little better. But the healthier I eat, the more I notice other issues.

When I eat things with a lot of wheat, or really any bread, my asthma picks up. And then about 20-45 minutes later, I feel crazy sick to my stomach. So I stopped eating bread. And then I noticed eating cereal did the same thing. I love cheese, and noticed the same thing while eating some.

And it occurred to me that what I’ve heard from people for years about dairy and wheat agitating RA could be right. So I stopped eating those things as much and have noticed that my arthritis is calming down.

Gluten intolerance symptoms are here. I’m amazed at how many I experience, and even more amazed that listed on there is juvenile idiopathic arthritis. It’s just crazy. Lactose intolerance symptoms are here. I’ve always had rumbly tummy noises (to quote Pooh Bear), but never really knew why. Now it makes sense.

Supposedly, along with gluten intolerance comes an intolerance to fructose and sorbitol. Sorbitol I don’t really encounter, because it is mostly in gums and diet foods and such that I can’t have because of my allergy to phenylalanine. But frutctose I encounter a lot… because my worst vice is soda. I’ve always used caffeine to help control my pain, and I know that I shouldn’t for many reasons, but I do. Oops. I also noticed recently that soda tends to increase the pain that I feel in my hands. So that’s fun. I’m down to one soda a day (mostly) but have also noticed that I’m drinking alcohol more… which supposedly also helps RA be less intense. And I’m not an alcoholic looking for an excuse – there are studies! I promise!

So in the past few weeks, the boyfriend and I have begun eating at home more, incorporating more healthy grains and vegetables into our diet. We still eat out one or two days a week, but we save it for the weekends (or special occasions) and it’s only one meal a day. We are spending more money at the grocery store, but less money elsewhere, and that is also helpful. It’s not always easy to find foods without dairy or gluten, but I’m finding out the best places to look, and that’s a start. Whole Foods has a lot, but so does Woodmans, a local grocery store.

It’s fun to eat healthier, and I feel so much better lately. The only thing that will make it better is my upcoming job change. Standing on my feet for 8+ hours, the stress, and all the things I end up doing extra are not worth the pain that I then experience… especially since it seems as though my current employers could really care less about the accommodations that I need… which is really sad, but oh well I guess. I could be mean, and take it further, but since I’m leaving I won’t. I’ll just get excited about this being my last real week, save two more shifts the weekend after next.

PFAM: A Call for Submissions

Hey! I had so much fun last time, I was really excited to get in on hosting this edition of Patients For A Moment, or PFAM.

Recently I have gone through some interesting life changes. In late June/early July, the boyfriend and I moved in together. In August, I had oral surgery. And now here’s September, and not only am I beginning to eat healthier, but I’m also changing jobs in a few short weeks.

So with that in mind, here’s the topic for this edition of PFAM:

What changes have you made for the better this year, and have those decisions helped as you thought? If so, yay! If not, what do you wish was different about the outcomes?

Personally, all of my decisions have worked out well and I’m excited to see what happens with the upcoming changes I’m making. But we will see.

Email me your submissions by 11:59pm on Sunday, October 9th to walters4-at-wisc-dot-edu. Your email should include:

1. Your name
2. Your blog’s name
3. Your post’s title
4. Your post’s URL
5. Awesomeness

I’m excited to read about the changes you’ve made in your life!

When Ugliness Returns

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.

La Vie Boheme

The latest Patients For A Moment (or PFAM) blog carnival topic focuses on music, which I absolutely love. Phylor has asked us to explore, essentially, the soundtrack to our illness. I find it funny timing that she would pick this topic. Here’s why.

Last Sunday, while amping myself up for my wisdom tooth surgery the following Tuesday, I did something that I’ve always wanted to do. I woke up late. I popped open a gigantic bottle of Arbor Mist Sangria, my favorite wine. And proceeded to drink… while watching the Blu-Ray DVD Rent: Filmed Live on Broadway. It is the filmed final performance of the one play that I can say changed my life.

When I was in high school, I was in an abusive relationship with this kid pretty much from my sophomore year until graduation, give or take a few break-ups in-between. My senior year of high school is when the bulk of the break-ups came, because I realized what a bad situation I was in and I knew I needed to get out. Up until then, I had a kind of ‘whatever’ mentality regarding things. I knew that people didn’t believe I had an illness, especially with the lack of doctor’s visits due to my family’s income. I figured that I had found the best I could get – which clearly I now know was so far off.

The biggest change my senior year of high school was that my best friend, my uncle Nathan, moved back to Eugene with his family. Having just gotten out of the army, they moved in with us. Nate has always been a huge help and encouragement to me. So when he and his wife introduced Rent to me while I was home sick for a few days, my eyes opened up to a lot of things. Each time I listen to or watch Rent, I take something new away from it. While I enjoy the movie, released in 2005, I will always love the music itself more. But watching the actual play, on Broadway, was sadly something that I wasn’t able to do. So when I saw this DVD last weekend at Barnes & Noble on clearance, I snatched it up quickly.

If you don’t know the basic story line of Rent, it’s about a group of friends dealing with disease, discrimination, relationship issues, poverty – life, essentially.

Here are just a few of my favorite songs and lyrics from Rent:

One Song Glory:

Find/the one song/before the virus takes hold/glory/like a sunset/one song/to redeem this empty life/time flies/and then no need to endure anymore/time dies

Life Support:

Look I find some of what you teach suspect/because I’m used to relying on intellect/but I try to open up to what I don’t know/because reason says I should’ve died/three years ago

Will I:

Will I lose my dignity?/Will someone care?/Will I wake tomorrow from this nightmare?

But my favorite song above all is I’ll Cover You. If I posted it, I’d just end up posting the whole thing. The lyrics are here and the song itself is here. The reprise is here and, no matter how many times I watch or listen to this play, I can usually hold back tears except for when Collins begins to sing. His relationship with Angel is so sweet and, spoiler alert, when Angel dies because of AIDS, it is the saddest thing.

But not all of the music from Rent is sad! Check out songs like La Vie Boheme and Out Tonight. Rent has something for just about everyone, and is truly a celebration of life – with all the good and bad included. That’s why I really think it is the soundtrack to my illness. I have good times, bad times, and horrible times as well. There are times when I want to go out and dance my butt off, and other times where I feel like no one is there for me and I’m all alone dealing with my disease.