¡Año nuevo!

It’s 2013!

… and I’m definitely a few months behind. Haha

Rodeo (February 2013)

1^st off! Thanks to all my readers who have stuck with me despite my spotty blogging. Since my last post, I traveled home for Christmas and spring break, completed and started a semester, took a small vacation to visit my boyfriend (who graduated from Army basic! Yay!) and am on track to graduate with my master’s degree this May!! Woot woot!

Now, I know you’re most likely not coming to Me, Myself and Still’s Disease to hear entirely about my non-Still’s life! Well, you’re in luck.  Lots of changes for me health-wise and it’s time to tell you about them!

Since the last time I wrote I’ve been in and out of visiting with a couple different doctors before I finally was able to see Dr. H after her maternity leave. And although there have been minor changes here and there, this is the current plan of attack:

·     Once –weekly Humira 

Daily

·      3mg prednisone (Dr. H says indefinitely but I have other plans)

·      Calcium +vitamin D supplement (Since the pred is hard on my bones, plus can’t hurt to have some extra calcium and vitamin D!)

·      Zyrtec (pesky seasonal tree allergies)

·      Advair

Synergy 360!

I have been feeling extremely well as of late! As I always say, still’s is absolutely unpredictable. Granted I have always felt much better when I workout on a regular basis and this year, I’ve really made the lifestyle change. I try to eat mainly whole, unprocessed foods and workout 4-5 days a week with a variety of cardio exercise to include Zumba, running and a circuit training workout on a crazy looking piece of equipment! While I have not lost any weight, I have gained muscle and am more toned!

I have also successfully made it into the month of April with no flare!!  *knocks on wood* That’s not to say that I still don’t have days where a few of my fingers or my back or wrists or knees are a bit stiff. Generally though, I consider myself very lucky blessed that I haven’t had any major issues. After all, it was this time last year when all of the symptoms that I dealt with at the beginning of my diagnosis came rushing back.

Still, in the spirit of Easter (Come on yall, it was just a couple days ago! haha)I would like to say that I feel very blessed. I am grateful for the body that God gave me even when I know it’s not perfect. I am grateful for family and friends that support me when I don’t feel 100%. I am grateful that I have access to healthcare that enables me to live my life more comfortably. Finally, I am grateful that I, Lindsey Claire, have ultimate control over my thoughts and emotions, not my disease.

Cascarón fun for Easter!

… Now, back to studying for my comprehensive exam this Friday… Wish me luck!

P.S. Cascarónes are the best!!

What Can I Say?!

With the start of my school semester and the subsequent classes and papers, it’s been easy to put off blogging. Haha (That being said, I have all As right now. Woot woot!!) Plus when Humira was taking care of all my still’s symptoms, there didn’t seem to be much to talk about. The operative word being WAS.

Yup, something has been developing over the past several weeks. The medication seems to be wearing off earlier and earlier. I’m due for my bi-weekly Humira injection tomorrow but I’ve been having a flare since Saturday. My right thumb and left pinky swelled up, my jaw, wrists, forearms, right hip, both ankles and hands in general have been painfully stiff and tender.

Admittedly, I don't think I'll ever get use to a surprise flare like this. It always feels like a huge blow to my confidence in my health. Sure, I would like to say that it’s due in part to the weather change but my gut tells me that, for reasons I can’t explain, Humira isn’t working.  For the last two injections, my right thumb (reaching all the way down to my wrist) has been giving me trouble a couple days before my Thursday injection date. Weird right?!

Since Dr. H is out on maternity leave, I definitely felt a bit lost when a physician’s assistant returned my call yesterday. Nonetheless, I am in the process of scheduling my next appointment, which was due to happen at the end of this month/beginning of next month anyways.  Who knows! Next time yall hear from me again, maybe I’ll be on a completely different medication! Ha!

This is just another reminder that still’s disease can be unpredictable and loves throwing you a good curve ball.  Also, it reminds me that saying why I’m having trouble walking, sitting, writing, typing, eating and/or moving really is much more complicated than being relegated to use the words, “I’m sick”. I know that I’m not contagious and I know there aren’t any visible signs (unless I have that lovely rash) but it’s the quickest and easiest way to say I’m not well.

Oh, I forgot to tell you! I'm a redhead now!

A couple of other quick updates…

1.     I’ve been going to Zumba for the past few weeks and loving it!! If you remember, over the summer Dance Central was my good cardio friend!

2.     I’m always trying to find the positive/humor in my situation. Here’s a couple tweets from last night:

Being forced to walk like a zombie would've come in handy two weeks ago... ‪#arthritisankle

I am Igor. I also just came up with my own theme song, Hobble... with an extra dash of "Hobbledy hobble, ho-ho-hobble, hobbin'" ‪#musicgold

3.     Finally, my boyfriend has been the best about my still’s! He helps me carry and open things when I can’t, he wants to know all about what's going on and, most importantly, he makes me laugh by hobbling with me when I’m walking like a zombie/Igor :)

Have a wonderful week readers! 

Las Vacaciones

Action shot! RZR ATV-ing

I’m back! It’s been a while but don’t worry, I’ve always had Me, Myself and Still’s Disease in the back of my mind. It’s been a busy but successful month! I’ve found a place to live next year, been vacationing and still occasionally trying to keep up with juicing. Hahaha I’ve been pleasure reading, running, hiking, biking, horseback riding, whitewater rafting, rzr atv-ing, swimming, cooking and watching so many Olympic events I think I may explode! :D I hope that y’all have been enjoying  the summer as much as I have.

For your reading pleasure, I will include the two days of mini-blogging my juice fast. (I can barely keep up with MMSD once a week; I was crazy to think I could write everyday for a week! Haha )

_______________

Thursday

Oh. My. Goodness. I am so tired!! Day Two of the juice fast and I am feelin’ it. The few people in the documentary who participated in the juice fast said that the first few days are the hardest. (They weren’t kidding!) Last night my mom and I endured sitting through a pork tenderloin dinner while drinking a tall yummy glass of mixed vegetable juice. MMMMM *see pictures from Blog U! post* Not going to lie, I was craving serious meat all yesterday evening… saw a Raising Cane’s commercial on TV and chicken never looked and sounded more tasty!!

This morning I was feeling great; feeding off of the momentum of enduring dinner without much, if any, cravings (of the actual food in front of me!! Haha) then getting up and juicing first thing before I headed out to a nannying job I have for the next couple days. But as soon as I got home around 2 PM and had my lunch juice/ juice lunch, I got a headache and felt extremely fatigued, exactly what I felt last night around dinner time!! I need sleep. Will report tomorrow

Friday

Well, I got my meat!! … it wasn’t as great as I imagined it…  I didn’t exactly break; I planned this meal ahead of time. We planned a birthday celebration with some family friends who specifically were cooking for us and I felt morally obligated (sounds so serious!! haha) to eat some of the food they brought over.

Sure sure, I know what some of you may be thinking, “if you ate solid food and meat, you definitely broke your fast.” And to that I have to say, in that sense, yes I did break my juice fast. But in my mind I am still committed to juicing for at least four more days!! Which if you have or ever juice in the future, is a serious feat. I chalk that up TO eating solid food and meat today!! I felt awful afterwards. Don’t get me wrong, the food was delicious but my body said, nuh-uh not having this. I felt super fatigued and even had to lie down and take a nap (not at all typical for me).  1.5 hours later, I woke up still feeling out of it. So I decided to make a juice and go for a run.  Well, I ran for almost 3 miles!! Success

_______________

As far as the juicing goes, I can honestly say it’s tough. I do believe that the vitamins and nutrients from juicing are benefitting me so I try and juice once a day now. Last time I checked, I’ve lost 4 to 5 lbs over the summer, which makes me think that my 15 lb goal was really really ridiculously ambitious! Haha Still, I’m proud of myself and know what I need to do to hit my ultimate goal weight… EXERCISE! I need to be doing intense cardio at least 5 times a week and I just haven’t put the time and effort in. Soon when I’m back at school and have access to a fully equipped gym, I hope that can be resolved.

Tree pose. Haha

Things to think about if you’re planning on trying juicing: Juicing does take time. You have to clean and cut your fruits and veggies, prepare your juice and clean the juicer. You also have to consider when and if you have access to your juicer. On a recent trip, I was able to buy 100% juices at Whole Foods Market but again, it takes more time and effort than just grabbing a salad or healthy food option when you’re out with family and friends. (My mom and I did haul the juicer up to our vacationing spot in Colorado though!!)

My stills continues to baffle me. Some days I have a little bit of a rash, other days nothing. Some days I feel a little stiff, other days not at all. I consider myself very fortunate. I have been taking my Humira for almost 2 months now and I haven’t had any major issues with my joints (to include those bothersome elbow joints)! Because stills is unpredictable and can vary drastically between patient to patient, I’m not sure why my stills has calmed down. It could be the Humira (I don’t think it’s the 2 mg of prednisone), quitting my stressful job, relaxing this summer, juicing and/or having set my plans for the future (at least until next summer. Haha).

I’d like to make a shout out to all the redditors who flooded my profile over two weeks ago. (Geez, it’s been that long!) I appreciate the uplifting comments made there. It’s nice to read that (at least some of) you find my blog helpful and enjoy it!! On that note, my non-redditor viewers can find that post and other helpful posts at reddit.com/r/autoimmunity. There are also other “Subreddits”, as they’re called, on the right-hand side of that page linking you to other related information pages.

Have a blessed week y’all and Happy rest of the Olympics!

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!!

Self Destruct and then some

Hey Blog World! Sorry I went on a 2 + week hiatus! Went to a family wedding this past weekend and had little time in between to commit to finishing my blog post. BUT all that aside, I’m doing pretty well!

Yesterday I took my first shot at home… I didn’t even feel it!! I numbed it up for about a minute, cleaned the area with an alcohol wipe and then did it!! Of course, that was not without counting myself down and saying a couple of times that “I can’t do it” but pretty darn proud of myself at the moment :D

Another reason I have been avoiding Me, Myself and Still’s Disease is because of big life decisions I’ve had to make… Yesterday, for health reasons, I gave my two weeks notice. My job’s environment of high level stress has intensified over the first weeks of summer camp and I believe the cause (in significant part) of my inflammatory rash/ systemic reaction. After speaking with my parents who have known every aspect of my still’s, they suggested I come live at home the rest of the summer before returning to school.  So! I’ll be making that move in the beginning of July.

It’s been a bumpy road to that decision. Part of me thinks I’m giving up by moving home and the other part of me is thankful that I have parents who can support me while I get myself better. On the bright side though, when my mom, my toughest critic, saw me over the weekend she said that I’ve definitely lost weight! Huzzah! My mom credits it to the 100% green coffee bean extract pills I’ve been taking… I don’t know if that’s all it because I’ve also significantly decreased my carb intake but I’ll take it!! Haha

I want to keep yall in the know and so, here’s the blog post I began to write last week but failed to finish…

Aka Self Destruct

This has been a pretty tough week. I’ll admit there was a bit of crying and quite a bit of contemplating…

First off, I think I should mention that my main rheumatologist “Dr. S” (who I loved) finished her work at my hospital. Thus I have been (reluctantly) seeing a new rheumatologist “Dr. H”… and frankly, I’m not on board with her yet.  I know it’s partially a doctor-patient trust thing we have to build… but it’s also her body language and the way she speaks about Still’s disease that tells me she’s less experienced. I get the feeling she’s trying to teach ME about Still’s disease… as if I haven’t lived with it for 5 years!

But I digress ;) Here’s a short run down of the past week’s happenings:

Sunday – last Kineret shot, feeling pretty good

Monday – feeling a little less loose/ a little achy

Tuesday – feeling the same as Monday. first Humira shot. Now it’s important that I tell you how it felt. Not. That. Bad. Sure it hurts but it’s literally over in a matter of seconds. What I told (and tell) myself was this; I’ve been giving shots to myself for the past 5 years. I am Titanium. Remember?! :D The worst part isn’t the needle but the last push of the medication.

After watching youtube, reading posts about the different shots and how they hurt then talking with the health nurse as I went through the Humira training… I just want to say, it is utterly silly that people try to console you by telling you that it’s the preservatives that hurt! …Ok, so what now?! Are you going to separate out the preservatives for me?! Hahaha

Wednesday am – sore throat pm- sore throat and rashes

Thursday am- rashes, sore throat, achy feeling in belly pm- rashes

Friday – call Dr. H, visit Dr. H where she prescribes a low dose of prednisone for my evident systemic reaction aka rash

Saturday - second day of prednisone, rashes look blander and feeling well

Sunday – rashes a little redder

Today is Monday and I don’t think the prednisone is working. As I drove home from work I wondered what my body was thinking… then the word came to me: Self Destruct

… Since writing that much…

Last week it was off and on rash but the sore throat went away and there has been no significant joint pain, fevers or any other external tangible reaction. The prednisone began to keep the rashes at bay until promptly 6 o’clock when it was time to take it again… which brings me back to yesterday.

I took pictures of my worst rash day last week for you all to see and thus am making my blog debut! Enjoy! Hahaha

Seriously though, I know I’ve made the right decision to separate from my job and get a plan together for my future. It’s comforting to know that I have parents who understand the severity of this disease and support me. So in love, I dedicate this blog to my parents :)