Blog U!

I’ve been trying to think of what to blog about next and, in light of my Conversations of the Autoimmune post, I feel I should connect you with the other Still’s Disease and Rheumatoid Arthritis blogs I’ve found helpful!!

* Not Standing Still’s Disease – She's the leading still's disease blogger out there (just enter "still's disease blog" on google! haha) plus that girl does her research!!

* Still’s Life -  Truthfully, what impressed me most about this blog was the information on still's disease because it is very thorough.

* Taking Charge of Still’s Disease - This is a completely information based blog and very helpful. 

* Chronic Curve - I can't get enough of the young and the diseased ;) This tumblr shows that this pre-med student knows herself and her stuff. 

* RA Guy – His 60-second Guide to RA is genius and his superhero theme is, in a word, adorable!

I'm pretty critical of blogs. For example, main blog pet peeve: I don't like posts that are long because it means I have to wade through all that writing to get to the meat of the post. (Hence the reason I bold. I do it in hopes that it will direct your attention if you don't want to read every single word I write) But that said, the blogs above are up to date and very popular. They can link you to other blogs if you're interested in reading more people's personal stories.

If you're reading Me, Myself and Still's Disease and have a blog, feel free to leave a comment with your blog url included for others to connect!

Lunch!

Healthy Lifestyle Update: A 2010 documentary I've thoroughly enjoyed and shared with many people is Fat, Sick and Nearly Dead. I first watched it a couple months back and was floored by the results of going to an all fruit and vegetable juice diet, even for just 10 days!! The film follows two men, who have an autoimmune disease called chronic uticaria along with being overweight, and their determination to turn their health around with a micro-nutrient diet, starting first with a juice fast. My mom is my biggest supporter of healthy living and loves to read about ways to improve your health, so I knew she would love see this... as soon as we finished the film, which *spoiler alert* ends with both men coming off all medication for their autoimmune disease, we headed out and bought a juicer!! I'm three juice meals into it and... it's going. hahaha Of course, the fruit based juices are much more palatable then the heavily vegetable based juice recipes (which admittedly both my mom and I have held our noses to down the "mean green juice"!). But if doing this juice fast helps my body get the tools it needs to be healthy and potentially fix itself and I lose several pounds (!!!), then I can surely do this for at least a week!!! ... right?!

Mmmm! Hahaha
... And yes, it does smell like grass XD

Hopefully, next week I'll only have positive things to report on that! My stills has been doing well otherwise. Rashes here and there are common but mostly under control which to me means the 4mg of prednisone are working. Nothing is ever 100% but for the most part my joints are doing fine. My right elbow is tender from time to time but two steroid shots this year probably do that to it!

Wish me luck and have a blessed week everyone!

Homecoming!

Successfully moved home!! But also getting over a bit of sickness :(

This first week at home has been relatively unproductive but very relaxing. It’s great to be back home with my family!! And now I figure that if I’ve got a whole month to be relaxed with no work… it is the perfect time to be productive! Haha Of course, this includes reading, exercise, healthier meals and mainly organizing... to include organizing my future plans! Oh boy!

Healthy Lifestyle Update: I’ve already lost a couple pounds!! Because I’m trying to go easy on my joints, I’m careful and very attentive to how I feel. Thankfully for me, my family home has a pool!! So I’m swimming to alleviate pressure on my joints… But I also credit about 30-45 minutes daily of Dance Central 2 with giving me good cardio :) I’m again trying to shy away from refined carbohydrates and getting back to taking those lovely green coffee bean extract pills. My summer goal is to lose 15 lbs (6.8 kg) and I think it’s totally doable with the track I’m on!!

As far as my stills goes though… I haven’t had any serious joint pain anywhere, occasionally I wake up with stiff elbows or my knee aches for a bit but overall nothing out of the ordinary still’s life! Of course, the rash is still very unpredictable. Sometimes it’s covering a significant portion of my thighs and other times it’s small patches all over, which is slightly frustrating when in this hot Texas summer I’m wearing shorts and short sleeve shirts all the time!!

I leave you today with this “poem” that I found on another blog because it really resonated with me and evidently others with arthritis. I think it’s very relevant considering July is Juvenile Arthritis month!! While I realize arthritis is only one (but significant) component of JA, I think it’s great to recognize those youth representing and expressing themselves and the normalcies they live with everyday. You can find out more information about JA through the Arthritis Foundation website!

Dos and Don’ts for Arthritis written by Arthritis Kids SA

Don’t assume that because I look well I feel well. Looks can be deceiving. Many days I look great but feel terrible.

Don’t tell me you know how I feel because you DON’T. Two people with the same disease can feel totally different.

Don’t tell me ‘’it could be worse’’. Yes, it could be but I don’t need to be reminded all the time.

Don’t be upset that you can’t ease my pain. It won’t do any good two of us being miserable.

Don’t ask me how I feel unless you really want to know. You may hear a lot more, than you are prepared to listen to.

Don’t assume because I did a certain activity yesterday that and I can do it again today. Arthritis is ever changing. Each day is different.

Don’t decide what I am capable of doing. Arthritis does not affect the brain. Allow me to decide what activity I can participate in. There may be times that I make the wrong decisions, and if I do, I will know it soon enough.

Do learn everything you can about the disease. The more you know, the better equipped you will be to know what to expect.

Do realize I am angry and frustrated with the disease, not with you.

Do let me know you are able to help me when I ask. I’ll be grateful.

Do offer me lots of hugs and encouragement.

Do understand why I cancel plans at the last minute. I never know from one day to the next how I will feel. Arthritis is like that.

Do continue to invite me to all the activities. Just because I am not able to bike ride with everyone doesn’t mean I can’t meet you for a picnic at the end of the trail. Please let me decide.

... Also, Happy Friday the 13th ;)

Conversations of the Autoimmune

Monday I had a Dr.'s appointment to check in on how the humira was working but in the process got to connect with some other autoimmune patients....


(I wrote this in the waiting room...)
I met another still's patient! I was so excited as I eyed her kineret shot in a small clear container. It was clear to me that she had come for her first injection education training... I have very fond and recent memories of kineret and how it worked for me, so I shared some of my experience with "the silver bullet" for stills as it was introduced to me. At first we both didn't divulge what we had until I thought about it... I have a blog about my disease for goodness sake!!! Hahaha As soon as I started is when she pointed to herself and said "stills disease" with a look of understanding. We then proceeded to discuss symptoms, diagnosis and treatment. She even mentioned that she attends a stills support group in the area! It's crazy how people can come together over anything. We are social beings I suppose!

Still, it's weird to me... speaking about my disease with other people because my experience is so personal! But everyone's is!! In the last post, I mentioned going to a family wedding. While I was there I got to chat with one of my uncle's about his chron's, another but more common autoimmune disease. Of course, there were plenty of things said in the course of our conversation but what really touched me were the words that attempted to describe the indescribable. Only another autoimmune patient can truly begin to understand the  pain one feels and the challenges one faces with these diseases... But I do appreciate who genuinely try.


Since writing that...
Dr. H was considerably behind. I had been waiting for over an hour when out of the door to the back appeared one of my coworkers!! I don't know her very well and I never see people I know or people as young as I am in Rhuematology!! I was shocked and didn't quite know how to approach the situation... should I discuss my health with a coworker?! We said our "Hellos" and I confirmed that she was the patient keeping Dr. H. I let her get to work with out much questioning but as soon as she left I knew I had to get her contact information... And now I have a friend who has lupus, another autoimmune disease. :D


Having these opportunities to converse with other autoimmune patients, read blogs and write my own blog has been very informative and cathartic for me. It gives me perspective, strengthens me and encourages me to continue finding out as much as I can about still's disease.

To all my fellow Americans (but also to my non-american readers!), have a Happy 4th of July!!