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. :)

Rain, rain, go away...

It rained last night, and apparently it was one doozy of a storm that came through. I would be completely oblivious to this fact however, as I was already asleep when it began, and it was over when I got up; had it not been for the fact the ground was wet, and all my coworkers were discussing how loud and crazy it was. You see, I may have trouble falling asleep on occasion due to symptoms and just the all around blahs of having a chronic disease and all that entails, but I have always been a heavy sleeper. I once slept through a tornado coming through our area, we'd camped out down in our basement, and it was actually rather loud, but I was out and heard nothing. Which is why, when on Plaquenil I had trouble staying asleep was so disconcerting. But that’s a post for another day. Back to the storm. But first let me give you some background info: my last few days and my quest for better fitness! What I would have thought was creating today’s problems had it not been for the obvious signs, and people’s announcements, of the storm the night before.

If you have RA, Lupus, MCTD or any other arthritic like autoimmune disease, you know the almost devastating effect changes in barometric pressure can have. It's ridiculous really. I went to bed feeling rather good. I'd been trying to stick with a new exercise program: and by that I mean actually using the Pilates and core workout material/videos/equipment I already own and have...along with (so far) daily walks at the peninsula with my good friend Elizabeth. In the last four days we've walked over 12 miles: which let me tell you, is something I'm rather proud of, given my current state of not having my disease "under control". Yesterday was a little rough, I will admit. My sister Mindy went along with us, and I realized how much Elizabeth had been letting me set the pace to our walks. I was finding myself unable to keep up with them: the pain I was experiencing in my shins (weird I know, but muscles oddly are affected by Lupus/MCTD as well), knees, and feet. At one point I started to get a muscle spasm in the arch of my foot and I was regretting wearing my new sneakers.

I made a comment shortly after we started, that I could not walk that fast and my sister made some joke about stretching before exercise. And while I admittedly had not stretched, it wouldn't have mattered anyway. It was my body, and my disease's, way of complaining that I was doing more than it could handle at this point in time, and it telling me that I needed to slow down or I WILL regret it later... They did slow for a little bit, but after a while they got going again, and I was slowly falling further and further behind. I refused to push myself and be subjected to another flare-up. Missing another week of work? Home in bed, bored out of my mind, with high temps, an aching body and the need to sleep but the inability to do so? I'm sorry, not signing up for that voluntarily...no thank you!

I was trudging along behind them, not able to hear what they were talking about, regretting not having my iPod, and wondering if I just turned around and went back to my car, would they even notice? In other words, I was feeling pretty sorry for myself, and my current state and what this disease will do to you. The changes it makes to your body, the changes and compromises you have to make regarding what you are now able to do physically, not to mention the emotional toll of dealing with all these new changes, as well as getting to the point where you can accept and learn to live with it. Anyway, they eventually noticed I was lagging behind, and pulled off the trail to take a break. I didn't really need a break, just for them to slow down, but I wasn't really gonna argue with it. After we started back up again, it was a pace I could keep up with and it was all good. Another four miles accomplished! After the walk we came back to my place and hung out for a while. When they left, I was feeling so good, and really not ready for bed, so I did some ab exercises and ran up and down the basement stairs a few times. After all that I was ready for bed, and drifted off with no problems.

That brings me back to this morning, and my little rain dilemma. I still had no idea it had rained the night before when I got up, but the first thing I noticed was how much my feet hurt. As I'm getting ready, I notice the hands and the shoulder, and think: crap! I went too far! It's really bad when the mere thought of drying my hair just seems like too much work. So I did my typical wet hair twist, and headed upstairs to get my coffee on the way out the door. And that’s when I notice the large puddle at the end of our driveway, and that my car looked a little wet and was covered with a bunch of junk from the tree behind the house. That’s when the pieces started to click together...After hearing all my coworkers commenting on the severity of the storm that cinched it for me. I was doing alright pacing myself; it was the random storm that was behind it all. Which is nice, because it meant it is likely to go away when the weather evens out instead of meaning a flare was on the way.

It's amazing what a little rain will do, isn't it? Brings the old nursery rhyme to mind: "rain, rain, go away. Come...." wait a minute...maybe not. Wouldn't it be awesome if rain were not a necessary fact of life? Actually, it would be really awesome if it had no effect on me at all. I used to love it when it rained. And a good thunderstorm? Bring it on! I loved to watch the lightning flash across the sky. Now it means I have to loosen the laces on my shoes and add some extra Omega-3's to my collection of pill popping adventures, and wait for it all to pass.