I win a blog award....

Seriously...I know what my (now 4 5) followers are thinking...really? Apparently its not the number of people who read it, but who. Thank you SR (@gradstdntwlupus)  The Life of a Grad Student with Lupus,  for nominating me for the One Little Blog Award! I'm seriously honored that you chose me as one of your favorites to follow! And I'm seriously sorry, its taken me this long to respond to it. In fact, I have a lot of blogging to catch up on, because I wanted to post on this first, but havent had time to narrow down my favorites to 15 people. :) So here goes...

As acceptance of this award, the following criteria should be met:

1. 1. Accept the award, post it on your blog together with the name of the person who has granted the award and his or her blog link.
2. 2. Pass the award to 15 other blogs that you’ve newly discovered.
3. 3. Remember to contact the bloggers to let them know they have been chosen for this award.

I found out about this a few days weeks ago, but have been ridiculously busy, with work and other fun stuff, which I guess I'll have to blog about later! But for now, know that narrowing down my favorites for this post was seriously challenging! As others have done, I've pulled out a few of my favorites that have already won the award, not because I love you any less, but because we want to try to spread the love around. :) Anyway...in no particular order, here goes... 

1.  Sara Nash at The Single Girls Guide to Rheumatoid Arthritis was an amazing find when I first started looking for other people out there blogging about their experiences with RA. This was before I found out my diagnosis had changed, but I still keep track of her blog. Not only because RA is a part of MCTD and what I'm still dealing with, but because she has a real knack for hitting the facts and emotions of a young single living with a chronic illness. She's open about everything and shares her experiences about all areas that we are struggling with: the illness itself, as well as how it affects our daily lives and interactions with others. Most especially check out her posts on dating with chronic illnesses!

2. Sara Gorman from Despite Lupus has written a book, which I fully intend on reading when I'm able to find the time. The book is also called Despite Lupus: How to Live Well with a Chronic Illness. It's on my reading list...honest! I've heard her speak on the radio, as well as had conversations with her via email, and I must say that Sara is a must read! She's a young wife and mother living with the daily grind of life with Lupus and shares the trials and suggestions of how to live a good life...well... Despite Lupus :). 

3. Amanda at All Flared Up: and Arthritis Blog has an entertaining way of projecting the feelings we all have of living with arthritis, etc... She may feel she whines a lot (as she mentioned a few days ago) but I think thats partly what these blogs are about, letting our feelings and frustrations about how our diseases affect our lives out, safely...without harming those around us who just happen to occasionally frustrate and annoy us because of misunderstanding us and what we go through. And lets be honest. How many of us DON'T whine on here a time or two...or 5o.... :) 

4.  Megan at Sticks & Stones talks candidly about being a mother of two kids with RA. She talks about her struggles with medications and other daily challenges we all face as people with chronic diseases.

5. Jeanne from RA a Walk by Faith shares her experience with using AP (antibiotic protocal) for her RA. She talks about what she's experiencing with the treatment. As a fellow Christian, I really appreciate the fact that she shares her faith along with her general life experiences.

6. Leslie from Southern Gal with RA is also trying AP therapy, and is also sharing her experiences and ups and downs with trying the new protocal.

7. Mike at My Life and New Fight with RA gives a guys perspective on life with RA. He talks about his family and the challenges of living with RA while continuing with his previous outdoor hobbies/activities.

8. Andrew at Living with Rheumatoid Arthritis also shares about being a guy with RA. Typically a disease that targets women, Andrew shares about being the father of four, and getting back into activities and vacation sports that he was active in pre-RA. He also shares about new technology and medical information that may or may not benefit those with chronic diseases.  

9. Bionic Lady was diagnosed with RA in her teens, like I was. While she doens't post very often, she's honest about her experiences and life in general. Right now she and her husband are trying to get pregnant, so she's been sharing about the various challenges and steps needed when trying to concieve with a chronic illness. Something I'm sure a lot of us worry and wonder about.

10. Living It, Loving It talks about being a working mom with RA and Fibromialgia. She talks about the challenges of living and working with invisible illnesses. She shares general information about RA and organizations, books, gadgets, etc that are helpful for the rest of us. She artfully puts into words what most of us are feeling, and even has a section with a letter to "healthy people" that helps explain what life is like for someone with an invisible disability/disease.

11. Confessions of an RA Superbitch (while I don't particularly like the name, or really agree that it fits her, she has an often hilarious take on life with RA. Mostly its her sharing her honest, sarcastic, and sometimes angry responses to random people/situations that she encounters)

I feel like I'm really starting to repeat myself. Its very hard to come up with unique individual comments on each of these wonderful bloggers. We're all blogging about our experiences and challenges of living with a chronic illness. We all have our own unique style and voice in which we write and share with the online world. It makes us similar, but delightfully different. I enjoy each of their blogs and the ways they share their hearts as well as their struggles. I believe we each started out as a way to put into words what we are going through, hoping blindly that it may reach someone else and may be able to help them as well. Most of us have no medical backgrounds beyond our own medical files and personal experience, but their willingness to share of themself is something that I personally appreciate and has helped me know that I am not alone, what I am often feeling is normal, and that we're all here hoping to help each other through it. Thanks guys! With that said, I'm just going to list the rest of my fave's:


12. Christine at Lupus Girl- Living, Loving and Laughing with Lupus

13. Living with RA

14. Angela at Never a Dull Moment

15. Carla at Lupus and Humor

Recent happenings

Sorry for the lapse of posting! It's been a seriously busy time at home and work, and I was on vacation last week, so its been hard to find the time to sit down and type something out. :)

Things have been going fairly well the last month or so, but recently I've been having some minor reminders that, no, I'm not your "normal" 26 year old... And yet, life continues, and there's no way to put off what needs to be done, so I push through and ignore/pretend nothings wrong. And to be honest, its not really bad considering the past flares I've had changing and challenging life as I know it for weeks at a time, so that at least is a small blessing. I hope that things begin to clear up and go back to normal as I know it, but I suppose only time will tell. As I mentioned, its only minor. Just some extra fatigue, and the feeling of having a bruise over my entire body. For some reason my skin/muscles have been pretty tender lately, and even the most innocent contact has been leaving me feeling like someone hit me with a stick or something. Its ridiculous really, and hard to explain when someone pokes you or you accidentally run into something (I know, I'm supremely coordinated lately...) and it actually hurts like something more serious happened, but nonetheless, it is true. 

I'm also happy to report that it FINALLY rained today. Now if you read my last post, you're wondering if I've gone completely off my rocker, because rain and barometric pressure changes cause me to really feel some extra symptoms/pain. But, I've been feeling like rain has been coming for the last few days, and its been pretty horrible. So the fact that it DID rain, means that things will (hopefully) be going back to normal fairly soon. Which is sweet! I've been trying to remind myself to get up and walk around every 20 minutes or so, otherwise when I get up, I have some serious issues trying to move...and man does it hurt! I feel like I'm 90 and need my hip replaced or something...its insane, and hopefully almost over for the time being.

Other than that, life's been pretty unremarkable...And let me tell you, when you have a chronic disease/disorder- unremarkable is a blessing in disguise... Hope everyone is enjoying the amazing weather! It's been so nice out lately. Maybe I'll head to the peninsula for a walk...

Raining, ranting and more...

Alright, so I gotta warn you, I'm about to whine for just a little bit....

Do you ever find yourself trying to explain what you're feeling and how you compensate and try to avoid flares to family and friends just to have them completely disregard what you are trying to tell them...that you know your body, the reaction that you're experiencing, the progression that is inevitable and the steps you have to make to avoid complete disaster...just to have them shake their heads, give you some "helpful advice" and think they've solved your problem? I know...if you've experienced any type of chronic illness, it happens to you all the time. In fact, it may be so common to you that you just nod, maybe say a less than sincere thank you and move on to something else. I've had that conversation at least four times in the last month or so and have gotten increasingly annoyed at every conversation. It's not that I don't appreciate the fact that they care and want to help--I do! But seriously? I've been living with this for NINE years....I know what I'm feeling, I know what it means, and I know what works. And the advise given is usually something any normal sane person would find a reasonable suggestion, but again...I know what works, and believe me...if simple and reasonable worked, I would so be there. However...it does not. Let me explain...or complain...you can decide later. :)

As I've mentioned a couple of times on here, my sister and our friend Elizabeth (my one and only follower! Thanks E!) have been trying to be proactive about getting our exercise lately and have been going down to the peninsula to walk almost every day...if it's not raining (or Wednesday) we try to make it. It's also been raining off and on for the last two months...which has been KILLING me... seriously... its ridiculous... and it needs to end already...but anyway, back to my story... We're walking one day and we get to talking-somehow, I'm not sure how- about my standard Saturday morning routine. I'm a late night person, have been for years, and try as I may, I can not fall asleep before midnight. Can Not. I've tried...believe me, I've tried, I end up laying there for hours just waiting as the time slowly passes and I give up and move on to something else. Unless I'm practically out of my mind in a flare, sleep before midnight does not happen.

I've read many blogs about fellow RA and Lupus sufferers having to take naps during the day, go part time or stop working in order to compensate for the extra stress and fatigue chronic illness brings along as our constant companion. However, as a young professional, with a mountain of school loans, I don't have the luxury of sleeping in on a weekday, or taking daily naps, or even cutting my hours--also, as a single person, I need the full time status to keep and have medical coverage--and we all know how crucial that is... So to compensate for all of that, and because at the end of the busy week I'm usually exhausted, I use Saturday morning to sleep in and "recharge". I make up all the sleep I needed throughout the week and push back the clock on that countdown to flareups that inevitably comes if I overdo it. It may not be normal, but then nothing about my health has been normal in the last nine years. It works for me.

And so I'm trying to explain why I sleep in and why it works, and I get the standard answer--I get it from my mother and sister all the time, and no matter how many times I try to explain it, it still seems to be their miracle answer. "You just need to go to bed earlier..." I know...WHY didn't I ever think of that?? Seriously... And so I explain, again...why that doesn't work. But for some reason, they don't seem to get it. And I don't understand why. It's my body and while they've recently change my diagnosis, I've still been living with the same thing for the last nine years. I know what it feels like when I'm overdoing it, or about to. I know when I'm about to go to far or I need to slow down. I know when I need to take the time to sleep in, to avoid getting sick or completely mess up the way I've been feeling. I know. It may not make sense to anyone else, but it does to me. Because I live with it everyday. And I think that should count for something....don't you?

I'm just sick of having the same conversation, having to defend the fact that I don't usually get up before 10 on a Saturday morning...sometimes later if its really been a bad week, and getting the same old advice about what I'm doing wrong. Again, I know they're trying to help, and I know they want to understand and help me out, and they are some of the most supportive people I have in my life, but sometimes it just gets way too annoying.... And this concludes my ranting of the day... :)

An explanation of sorts...

Working out a few ideas for the direction I want to take my site. I started it as a way to express what I'm feeling about everything related to my RA. Well, turns out I don't actually have RA specifically, but a condition called Mixed Connective Tissue Disease (MCTD). A brief description is that it's kinda like a buffet or combo platter of a few major Connective Tissue Diseases: RA, Lupus, Scleroderma, and Polymyositis. It takes symptoms and characteristics of the different diseases, but it isn't a full blown version of any one of them.

Check out my links, book reviews, and favorite blogs. As you can see they aren't all specifically MCTD related. For one, there's not a lot out there, at least not from reputable sources. If you just tried Googling MCTD, you know what I mean. I even searched for blogs by other MCTD people and really didn't find much that was helpful there either. To make up for that, I research info about the four members (see the above list of diseases included) of the MCTD crew and gather info from each of them to help me understand MCTD better. So, I'm going to be adding some things, and playing around with others, to try to give this blog a dual purpose. I'll still be blogging about my own personal experiences and what life is like with MCTD, etc...as I have been; but I'll also be adding elements (such as the pages, you can now see above) that will also make this a resource to fellow MCTDer's like myself. I'm sure you're out there; and like me, you're probably wondering why there isn't more to know. I'm hoping to help change that.

So, sorry for the "mess" you may occasionally encounter, or if things get rearranged a few times. I'm still playing with the template, trying to widen all the areas and create more room, etc. As I'm not a programmer and really not schooled in HTML and whatnot, it may take me a while to work out.

I'm not sure how much traffic I'm getting or if people are really interested in keeping up with everything I have to say. Please leave comments, feedback, suggestions. Let me know what you like, dislike or would like to see. Also, as you may have noticed, I have a "followers" section in the left hand margin. It's empty... Feel free to help me change that. :)