Text
March 16, 2012
1 note

little happies

…so thankful for methotrexate that makes it possible for me to work in this new job that i love

i would not be where i am now without my rheumatologist.

Work and life are still hard. I still feel fragile and easily overdone. My health is very precariously balanced. I’m learning to keep it in check, but sometimes work refuses to allow the rest I need to maintain that balance. And that’s when I cry. Because I know that if I could just take the time off to let my body rest and recover, I would bounce right back instead of slogging my way through the week, running on Empty. It is so hard for me to accept my limitations.

I’m coming up on the last week of 3rd Quarter, which means I will have 2 weeks off for Spring Break. What a blessing it is to teach in a year-round school where the breaks are more frequent, and the workload is more evenly distributed throughout the year. God can be pretty cool sometimes.

We’ve had a few nice weather days this week, and I finally got to try out my new bike. I was endlessly happy to discover that I had no trouble at all with riding this week! Cheers to hoping it will stay that way.

Tags: ra rheumatoid arthritis chronic illness

Text
February 04, 2012
3 notes

So much hate for prednisone right now.

I am starting to think that maybe steroid dose packs do more harm than good for me… Just finished my 3rd pack in 6 months. They make my dry eyes and dry mouth a million times worse, and they do nothing for my energy levels or my joint pain. And even with antibiotics and otc meds, they haven’t helped me get over this sinus infection either. Plus, they make me act crazy out of nowhere- crying, laughing, totally zoned out, or enraged and I can’t even control it.

I saw someone post about how one of the side-effects of prednisone was “inappropriate happiness.” Yeah, I know that sounds like a good thing, but trust me, it’s not. This has happened to me a few times when I’m on a dose-pack and I drink coffee in the morning. Once last semester it happened to me while I was teaching. It is VERY BAD when you’re a teacher and your students think you are high because you can’t stop laughing. Yeah. Not cool at all.

One night this week, my boyfriend was being so sweet and making me soup for dinner, and I was just beyond exhausted, laying on the couch, my body tingling with pain from head to toe. I was a total bore to hang out with because I could barely complete a thought before zoning out. Anyway, there he was being great, and I just kept saying, “I’m sorry I’m like this… I hate that I’m like this..” because I couldn’t think any other thoughts and I was so depressed aout not being able to function through one full work week. After my whining, his response was “I thought your rheumatologist fixed your medicines. I thought you had it under control? Isn’t there something you can do about it?”

Previously, I barely had the energy to speak, but for whatever reason, that comment set me off and I was suddenly livid. I screamed, “I’m ALWAYS going to be like this! For the rest of my ****ing life, I’m going to be sick! And NO there is NOTHING I can do, I’m already doing everything I can! It’s NOT going to get better, it’s only going to get WORSE!” and then I burst into tears.

I was feeling defeated by the present and terrified for my future, which is a common feeling when I’m flared up, but I am usually able to control my frustration. Thanks to prednisone, I unleashed a fury of fiery tears on my boyfriend, and then I immediately felt terrible for taking it out on him, so I started crying and couldn’t stop for about an hour. :/ I was so embarrassed by my own behavior because I KNOW that’s not me! but how can you explain that to someone who can’t possibly know what it’s like?!!?

I am so done with prednisone. Never again.

Do y’all have any horror or success stories with prednisone? Plz share!

Tags: RA prednisone prednisonemonster

Photoset
January 11, 2012
75,509 notes

gpoy: raynaud’s edition

(via ixtli13)

Tags: raynaud's phenomenon Sjogren's Syndrome

Text
January 11, 2012

ioncewasyoung asked: I stumbled across your blog and was actually super excited to see it. I don't know anyone else who has RA or is on methotrexate & folic acid. It was nice to see someone else's opinion, and to realize other people know how it feels!

Yay! I know the feeling. When I first realized there were others my age on tumblr going through the same crap as me, I was so happy! I finally felt a little less alone; plus it’s nice to find & share advice from others who’ve been there.

Link
January 05, 2012
4 notes
Sjogren's & RA

In reply to Paula’s post a few weeks ago:

I have RA & Sjogren’s, although I’m not sure whether or not it’s secondary. I was diagnosed with Sjogren’s first, so who knows if it was in conjunction with the RA or not; it’s all kinda murky and the symptoms just blur together.  Anyway, the main problems with Sjogren’s for me are dry eyes, dry mouth, raynaud’s phenomenon, and heartburn/nausea.

The eyes are what really did me in first a few years ago. I can’t wear contacts anymore, and my eyes are so dry that there is actually scratching and scarring on my cornea now. Restasis and an endless supply of OTC preservative-free eye drops keep it under control, but it can still be a real pain sometimes.  It was a real blow to my vanity when I realized I seriously couldn’t wear contacts anymore, but I’m used to it now. The only time it really sucks is when I want to dress up and look fancy for weddings & other events. It is mega painful to wear contacts. I like my glasses now, but there are some times when it’s just not the look I want.

Biotene products help some with drymouth, and I always keep water, gum, or cough drops with me. I also drink a lot of tea. Yogi’s Throat Comfort is the best! Also, I take a prescription- Evoxac, which stimulates the saliva glands, so that helps a ton. BUT, evoxac has icky side-effects; it makes you clammy, nauseated, and mega sweaty. Lately I’ve only been taking it once a day instead of 3x a day like I’m supposed to. It doesn’t work as well when you take less, but it keeps the side-effects from being too ridiculous. Oh, and ps- it will make you drool all over yourself at night.  Which is just kinda funny, but if you’ve ever experienced dry-mouth, it’s  like YAAAAY! SPIT! It definitely beats feeling like you have sandpaper lining your mouth.

Raynaud’s, for me, is just an icy, tingly, stiff, feeling in my hands and feet, and sometimes even my elbows and knees. It intensifies the joint pain that is already there, but in a way, it also kind of masks the pain. I think that’s why for the longest time, when my Rheumatologist kept asking if I had joint pain, I was like, joint pain? What are you talking about? I can’t feel anything because my limbs are NUMB! As the pain intensified and spread, I began to identify it as pain and not just numb, cold tingling.

I always feel stiff and cold, even if it’s fairly warm out, so I wear tons of layers under my clothes. Fingerless gloves, scarves, heating pads, and microwavable rice-socks are my best friends.

Now, the Sjogren’s flares up just like RA does. If it’s raining outside, you can bet that my joints will be aching, and my eyes will be red. I know that seems backwards because moisture in the air should, in theory, help dry eyes, but dry eye caused by Sjogren’s is not the same as chronic dry eye, because the cause is different. In Sjogren’s, the immune system targets the moisture-producing glands. Humidity increases inflammation, so when your moisture-producing glands are inflamed, it not only stops working properly, but also causes further permanent damage to the gland (just like with inflamed joints.)

Honestly, compared to the fatigue and joint pain, Sjogren’s hasn’t been bothering me much lately; the symptoms from Sjogren’s improved once I started taking Plaquenil for RA, so it’s more under control now. The symptoms persist, they just aren’t as bad, and I guess I’ve just accepted them as part of everyday life now. With RA, I am still coping with the realization that I can’t do all the things I used to be able to do anymore. I’m still trying to figure out how to get through a day without enough spoons. L

butyoudontlooksick:

I have to find some comedy in this right now, but only because of my personal situation…Long story short, he determined that my RA had actually either morphed into Lupus, or that it was Lupus all along and I was misdiagnosed at the beginning…Turns out, it was not Lupus, but more likely Secondary Sjogren’s…

Does anyone on this blog have Secondary Sjogren’s? I really don’t know much about it. I had heard of it before, but all I know is what I googled and what my doctor told me. Anyone have any experience with this? (particularly RA and secondary Sjogren’s)…

Tags: sjogren's sjogren's syndrome rheumatoid arthritis ra autoimmune

Text
January 03, 2012
5 notes

RA, you’re mean.

I hate how my stupid stiff fingers can’t shuffle through papers and how it hurts to hold a freaking pencil. RA (or should I call it RAD now?) is not nice to teachers. When I first started mtx, I felt SO MUCH BETTER for about 4 months… I was SUPER TEACHER! and then by November my body was like, “JK!!! I’m gonna twist your limbs off and zap you of all your energy and make you come home from work crying every day! muwahahaha!” It was a mean flare-up.

So, I had to quit my second job at the tutoring center. Friday was my last day, and it was so sad because I LOVE that job. I am so angry at RA for taking this away from me. I had to drop several of my students, plus call in sick 4 times in November because by the time I came home from teaching during the day, my whole body was tingling and sore with pain, and my brain felt foggy and numb, and all I could manage to do was soak in a hot bath and sleep. :( The icky sticky weather that month was doing me no favors, and I know that working 2 jobs is hard, even for healthy people, but I know I could have done it if it weren’t for RA. I DID do it, even WITH RA, when the mtx was working.

After sleeping a ton for several weeks, a round of steroids, and an increase is my mtx dosage, I am starting to feel better… just in time for an interview on Thursday at a charter school in Atlanta. :) Please, 2012, be better than last year…

On a lighter note, I think it’s super funny how some of y’all are referring to methotrexate & folic acid as “Meth & Acid.”

Tags: rheumatoid arthritis autoimmune chronic pain

Text
December 30, 2011

letssharesecrets asked: i just read your shoes & RA post. and i can 100% relate. i'm still in high school, and i've had to wear running shoes everyday since sophomore year. i occassionally wear high heels for pictures for dances and stuff but then i have to wear running shoes to the actual dance itself. idk why i'm writing this. i guess i just want to let you know that i feel your pain- literally- haha and i'm glad you are still able to find a couple cute shoes that are comfortable!! and your blog is awesome. haha(:

Thanks for the sweet note!

I spoke too soon when I posted that entry. I’ve had trouble even wearing my comfy boots lately. It’s been ugly tennis shoes most days this week. But, I have special-made inserts that I put in my flats for the occassional party or event. :) Dang things cost more than any of my shoes!

Text
December 30, 2011
1 note

notyourgramma asked: Just popping in to say hi. I was recently diagnosed with a rare autoimmune disease, Wegener's Granulomatotis. A dear friend with Sjogren's insisted my symptoms were more complicated than "just" RA and helped me get the medical help I needed for proper diagnosis and treatment. Thanks for taking the time to begin this blog. Best to you..

I don’t know a lot about Wegener’s, but I do know how serious it is. Thank goodness your friend encouraged you to seek further medical care. 

I read on your blog that you are also a musician.. My boyfriend was a professional trombonist when we first began dating, but a year after he won a job with the symphony, he had a lip injury. Music was his life, and he has never been able to play since, so I understand how incredibly difficult it is to have lost the ability to do something that was once as natural and as necessary to your life as breathing.

Thanks for “popping in.” I wish you a life full of love and other blessings.

Photo
December 27, 2011
50 notes
LOL! Story of my life! chronicillnesscat: [Image: 6-piece blue colored background with a Siamese cat with blue eyes. Text reads: “Don’t drink at parties. Still pass out though”]

LOL! Story of my life!

chronicillnesscat:

[Image: 6-piece blue colored background with a Siamese cat with blue eyes. Text reads: “Don’t drink at parties. Still pass out though”]

Video
December 27, 2011
11 notes

Okay, yes, this is a very good simplified explanation of RA, but, I want to elaborate on some things that weren’t mentioned in the video that people who don’t know about the disease need to understand more than any of this. Most people already know that RA attacks the joints, beginning in the hands and feet… what they don’t always know is that:

  • EVERY joint in the body is being attacked. not just the hands and feet. look at a skeleton. look at ALL those bones! in between EVERY bone, there is a joint. Hands and feet have a ton of tiny bones & joints, but inflammation in the ankles, knees, hips, wrists, elbows, and shoulders causes terrible pain as well.
  • The pain is so much more than just a discomfort. I don’t mean that the pain is excrutiating (most of the time, it’s not- not for me, anyway,) The problem with the pain is that it is constant, and that constant pain really drains the energy out of you. It distracts you mentally, and fatigue’s you physically.
  • With pain, comes stiffness. It literally becomes difficult to move. The stiffness frustrates you when you have difficulty doing something simple like painting your fingernails, picking up change off a counter, holding a pencil, or typing. On really bad days (which for me=humid/rainy days, cold days, or days when I haven’t slept enough) my whole body becomes stiff. WALKING or even STANDING requires great amounts of my limited energy. I am lucky, because every day is not a bad day for me; others aren’t so lucky.
  • In RA, the immune system primarily attacks the joints, however, it can extend to other organs in the body as well. Many people develop secondary conditions (lucky me, hello, sjogren’s!) in addition to RA. Plus, all the medicines RA patients have to take in order to keep the disease under control can seriously damage your liver, and suppress your immune system, leaving you vulnerable to every infection, bacteria, virus, etc. that crosses your path.

Did I miss anything? I’m sure I did… feel free to add to this long list/explanation!

herboyfriendisenglishyaknow:

This is a really good, clear explanation of the disease that I have.  For those or you that don’t know, I have Rheumatoid Arthritis.  For anyone that has a loved one with the disease, or is simply curious as to what it actually is, I recommend watching this.

(Source: afuckingtroll, via lifewithautoimmune)

Tags: rheumatoid arthritis autoimmune chronic pain